The Leukemia & Lymphoma Society - Fighting Blood Cancers
63 Replies Latest reply: Oct 17, 2012 11:49 PM by Trey RSS

NATE'S AND MY JOURNEY

natesmama Registered Users
Currently Being Moderated

I ALREADY PUT THIS ON ANOTHER THREAD BUT DECIDED I WOULD USE IT TO START A NEW DISCUSSION AND HOPEFULLY MEET MORE FRIENDS AND SUPPORT.


I AM NOT A  CANCER PATIENT BUT MY 31 YEAR OLD SON WAS DIAGNOSED WITH CML A COUPLE  OF WEEKS AGO. THE DRS THINK THAT HE PROBABLY HAD IT FOR OVER TWO YEARS  BEFORE HE WAS DIAGNOSED. HE LIVES BY HIMSELF IN MIAMI AND WHEN HE CAME  HOME (DE) TO VISIT IN AUGUST WE WERE ALL AGHAST WHEN WE SAW HIM. HIS  PULSE WAS ABOUT 140 AT REST, HIS FEET AND ANKLES WERE SWOLLEN WORSE THEN  ANY PREGNANT WOMANS. HE HAD OBVIOUSLY LOST WEIGHT AND YET HIS ABDOMEN  WAS DISTENDED.HIS HEARING WAS VERY IMPAIRED IN ONE EAR, AND HE WAS  EXPERIENCING SOME PANIC AND ANXIETY RELATED ISSUES WHICH HE WAS TRYING  TO SAY WAS THE ONLY THING WRONG.

      I AM A MAMA BEAR EVEN THOUGH MY CHILDREN ARE GROWN, AND I BEGGED HIM TO  SEE THE DR WHEN HE GOT BACK TO MIAMI. HE DID, BUT THE DR ONLY FOCUSED  ON THE ANXIETY SYMPTOMS AND SENT HIM HOME WITH XANAX FOR HIS ANXIETY AND  AN ANTIBIOTIC FOR HIS EAR. JUST A FEW DAYS LATER, THE TOP OF NATHAN'S  FOOT BEGAN TO TURN RED AND SWOLLEN WITH WHAT APPEARED TO BE AN INSECT  BITE. LONG STORY A LITTLE SHORTER, HE WENT TO AN URGENT CARE, SAW A LADY  DR THAT REALLY LISTENED AND WAS CONCERNED. SHE TOOK AN EKG, A CBC, GAVE  HIM MORE ANTIBIOTICS AND SENT HIM HOME. THE NEXT DAY HE HOBBLED TO WORK  AND EARLY AFTERNOON RECEIVED A CALL FROM THE LADY DR. SHE SAID "I NEED  TO SEE YOU IN MY OFFICE AS SOON AS YOU CAN GET HERE". HE LEFT WORK AND  WENT TO THE OFFICE.

     I WAS AT MY DAUGHTER'S HOME HELPING WITH MY GRANDBABIES WHEN HE CALLED  ME AND SAID "MOM, I HAVE LEUKEMIA. THEY SAID I HAVE TO GO TO THE  HOSPITAL, BUT I DON'T WANT TO GO UNTIL YOU GET HERE." THAT WAS AROUND  2:00, FRIDAY AFTERNOON, SEPTEMBER 2, 2011. I ONLY HAD A COUPLE OF OLD  OUTFITS AND WORNOUT SANDLES WITH ME AT MY DAUGHTERS, BUT BY 8:00 P.M. I  WAS ON A ONE WAY FLIGHT TO MIAMI.

      THE NEXT MORNING WE WENT TO THE EMERGENCY ROOM AT UNIVERSITY OF MIAMI  HOSPITAL. THEY COULDN'T BELIEVE HOW BAD NATHAN'S VITALS WERE AND HE WAS  STILL WALKING AROUND.  HIS WHITE BLOOD COUNT WAS WAY OVER 600K, HIS B/P  WAS HIGH HE COULD BARELY BREATHE, HIS FEET WERE GIGANTIC AND HIS PULSE  WAS 150 LAYING IN BED. NEEDLESS TO SAY, HE WAS ADMITTED. SINCE IT WAS  LABOR DAY WEEKEND, THAY HAD SOME TROUBLE GETTING TESTS DONE ETC., BUT  FINALLY SEVERAL DAYS LATER HE WAS TOLD HE HAS CML IN THE ACCELERATED  STAGE. HE IS ON GLEEVEC AND IS NOW HOME. I AM STAYING IN MIAMI TO HELP  HIM OUT.

 

  NATHAN IS HOME NOW AND CONTINUING TO TAKE GLEEVEC DAILY. THERE WAS A LOT OF RED TAPE INVOLVED IN GETTING THE CHEMO FOR HIM AT HOME AND HE ACTUALLY WAS WITHOUT IT FOR 3 DAYS. HIS WBC HAS GONE FROM 600K+ TO YESTERDAYS READING OF 190K. IS IT DANGEROUS FOR THEM TO TAKE HIM DOWN SO QUICKLY? HE IS ON 600MG/DAY OF GLEEVEC.

  IN HIS "REPORT" THEY SAID THAT HE HAD THE PHILADELPHIA CHROMOSOME IN 95% OF HIS CELLS, BUT THAT THE BLAST COUNT WAS LOW AND HIS BONE MARROW SHOWED A LOW PERCENTAGE OF BLAST CELLS.

  IT DEPENDS AN WHICH DR YOU ASK ABOUT BMT. HIS ONC SAYS HE FEELS PRETTY SURE HE WILL NEED ONE AT SOME POINT, WHILE THE TRANSPLANT DR SAYS NO.

  IT WORRIES ME TO THINK OF HIM BEING ON SUCH A TOXIC DRUG FOR 30+ YEARS.

  I APPRECIATE SO MUCH ALL OF THE ENCOURAGEMENT I HAVE ALREADY RECEIVED AND WILL BE LOOKING FORWARD TO MORE SUPPORT, EXPLANATIONS AND ENCOURAGEMENT.

                                                                                                                                                                                              NATESMAMA (PAT)

  • Re: NATE'S AND MY JOURNEY
    hannibellemo Registered Users
    Currently Being Moderated

    Hi, Pat

     

    Our children never really grow up in our eyes they just get older, I know what you mean about being a mama bear - I think most moms would have done the same and aren't you glad you did?

     

    It sounds like he is responding very well to the Gleevec and it is good news that the blast counts were low although it would be helpful to know what the exact number was because then the more technically inclined members could give you better information. Do you know if Nate's oncs have changed their minds on his Accelerated Phase - CML diagnosis? Have they mentioned that it could be Chronic Phase instead? Be sure that Nate gets copies of all his test results and if you let us know the results there are people on the board who can interpret them for you so they are easily understood.

     

    Don't worry too much about Gleevec and toxicity. We are not talking about chemotherapy here in the cancer treatment sense. Chemotherapy drugs work like a shotgun and destroy any cells that get in its way, not necessarily just the malignant ones - that is true toxicity. Gleevec (and the 2nd generation TKIs - Sprycel and Tasigna) are more correctly called "targeted therapy". These drugs zero in on the mechanism which allows our white blood cells to reproduce like crazy. I'll give you a link to go to that one of our members, Trey put together, to educate and reassure the newly diagnosed.

    http://community.lls.org/thread/2600?start=0&tstart=0

     

    I know you have alot to absorb just know but I wanted to let you know that you came to the right place for current and accurate answers to your questions and maybe even more importantly, encouragement and support when you need it. I would also encourage Nate to get on and talk to people - there are many young people who post here regularly.

     

    Good luck!

     

    Pat

     

    PS. Using all caps makes your posts very difficult to read. Please don't use your caps lock key when posting.

  • Re: NATE'S AND MY JOURNEY
    Trey Registered Users
    Currently Being Moderated

    Getting the leukemic counts down quickly is important, so he is not dropping too fast.  But he should be taking Allopurinol to help remove all those dead cells.  And he should be drinking a lot of fluids until the cell counts get down under 25K.

     

    The low blast count is a good sign.  If his Basophil counts were also less than 20% at diagnosis, then he was probably still in Chronic Phase, and there would be no reason to assume a BMT will ever be necessary.

     

    Gleevec and other TKI drugs are not "toxic" and they are not chemotherapy.  They have side effects and some relatively rare longer term effects in some people, but most side effects are reversible upon stopping drug therapy.  Most drugs such as cholesterol drugs, blood thinners, and a host of other drugs people take daily for a long time have side effects, some difficult.  All of us would prefer to not take a drug every day, but we also prefer it to a BMT or the usual dire consquences of CML.  I believe you will gain a greater appreciation for these TKI drugs the more you learn about them, and the more you see what they do to make Nate well again.

    • Re: NATE'S AND MY JOURNEY
      natesmama Registered Users
      Currently Being Moderated

          NATHAN IS ON ALLOPURINOL TO CONTROL THE URIC ACID IN HIS BLOOD. THE HOSPITAL DIDN'T REALLY GIVE HIM ANY PAPERWORK EXCEPT FOR THE PAPER CONCERNING HIS "PHILADELPHIA" RESULTS. WHEN WE GO TO THE DR TOMORROW, I WILL ASK FOR OTHER RESULTS WRITTEN DOWN FOR US.

          I REFERRED TO GLEEVEC BEING TOXIC BECAUSE THE PACKAGING IN CAME IN THE MAIL AND A LABEL ON THE MEDICINE ITSELF SAID "TOXIC HANDLE AS A BIOHAZARD" OR WORDS TO THAT EFFECT. I TAKE SEVERAL MEDICATIONS MYSELF, BUT HAVE NEVER RECEIVED ONE LABELED THAT WAY.

           ACTUALLY, SO FAR, NATHAN HAS HAD VERY FEW SIDE-EFFECTS. HE LIKES THE OCCASIONAL GLASS OF WINE, OR TWO, IS THERE ANY HARM IN THAT? ANY OTHER FOOD, DRINKS, ETC THAT HE SHOULD EITHER STAY AWAY FROM OR EMBRACE?

          THANKS AGAIN.

                                                                                                                                                                                                                                                    PAT

      • Re: NATE'S AND MY JOURNEY
        Trey Registered Users
        Currently Being Moderated

        The packaging warning is odd, but the reason it says that is because there is a caution about pregnant women coming in contact with Gleevec.  A silly issue to which lawyers over-react.

         

        Drinking occasional wine, etc is fine.

        • Re: NATE'S AND MY JOURNEY
          Happycat Registered Users
          Currently Being Moderated

          Ah, so that's perhaps that's why the pharmacist who filled my first prescription said the same thing.  Must've assumed I might be still building the family.

           

          They had a similar warning on TV a few years back for some sort of male hormone thingie - I think it was to help regrow hair.  Not rogaine, it was an actual pill, for alopecia.  Can't remember the name of it, but they were very specific about pg women not handling broken tablets.

           

          I asked my onc about the "toxic" warning, and he said not to worry about it.

           

           

          Traci

          • Re: NATE'S AND MY JOURNEY
            CML_in_ATL Registered Users
            Currently Being Moderated

            And I'll chime in on the wine -- I have a glass or two of red wine nightly with Gleevec 400mg (that I take with breakfast) ... my CML specialist said it was fine.  He just suggested that I don't drink the whole bottle in a single evening.

      • Re: NATE'S AND MY JOURNEY
        CallMeLucky Registered Users
        Currently Being Moderated

        Grapefruit juice should be avoided, per the manufacturer.

         

        Some food he may find he will not tolerate as well as he used to.  My tolerance for spicy food has gone down a bit, but overall I haven't had to change my eating habits or really much of anything.  Fatigue can set in over time.  For most it is not debilitating, but it can be annoying.  I am 38, married, with two young children.  I still work full time and do all the family stuff I used to, but I do go bed earlier now and occasionaly have to catch a nap.  Not the worst thing when you look at the big picture.

        Glad they got him diagnosed and he is now on treatment.  The best thing is to just take it slow and not let what if's get out of hand.  Stick to what are the facts and deal with it as it comes.  Very easy to start planning all the alternate scenarios out.  That will mostly be an exercise in wasting time.  Just stick to the treatment and give it a chance to settle down.

         

        Best of luck.....

        • Re: NATE'S AND MY JOURNEY
          natesmama Registered Users
          Currently Being Moderated

          HELLO EVERYONE. NATE HAD A VERY GOOD APPOINTMENT TODAY. HIS WBC IS DOWN TO 89K. WE ARE SO GLAD FOR THAT, QUITE A DROP FROM 600K+ IN 4 WEEKS. I ASKED THE DOC IF HE IS STILL IN ACCELERATED STAGE OR BACK TO CHRONIC. HE SAID HE IS STILL ACCELERATED. HIS SPEEN AND LIVER ARE STILL AS ENLARGED AS IT WAS FROM THE BEGINNING SO HE CAUTIONED HIM TO BE CAREFUL. NATHAN ASKED ABOUT DROPPING HIS GLEEVEC TO 400MG BUT DOC SAID NOT YET. HE HAS PRETTY INTENSE NAUSEA SO HE POPS HIS PILL JUST BEFORE GETTING INTO BED. HE IS DIZZY MOST OF THE TIME WHEN HE IS UP AND MOVING. HE ONLY HAS TO SEE ONC 1/WK NOW. HE IS GOING BACK TO WORK NEXT WEDNESDAY. I AM GOING TO STAY WITH HIM A BIT LONGER, TO HELP WITH THE LONELINESS AND ANXIETY. I AM SO SORRY THAT MY SON GOT SO ILL, BUT I AM SO THANKFUL FOR THE SPECIAL TIME I HAVE HAD WITH HIM.

            IN RESPONSE TO SOME OF YOU.......NEVER SAY NEVER, OF COURSE BUT NATHAN ISN'T A FORUM TYPE PERSON. HE DOESN'T MIND THAT I POST ON HERE, HE APPRECIATES YOUR ADVICE AND ON THE FACEBOOK PAGE OUR FAMILY HAS SET UP FOR HIM HE ALLOWS AND EVEN ENCOURAGES ME TO BE VERY HONEST AND TO POST PICS ETC, HOWEVER I DOUBT IF HE WILL GET ON HERE AND POST HIMSELF.

            I WILL UPDATE FROM TIME TO TIME. THANKS FOR ALL OF THE ENCOURAGEMENT.

                                                                                                                                                                                                  NATESMAMA, PAT

          • Re: NATE'S AND MY JOURNEY
            Susan61 Registered Users
            Currently Being Moderated

            Hi Pat:  So glad for your uplifting post on Nate.  He will get through this, and if possible maybe he can wait to return to work if he is having these episodes of dizziness.  I do not remember if you said what he does for a living, and its none of my business with regard to how he manages financially.  He should be eligible for some temporary disability.  Also, he should avoid contact with people who are sick.  He is doing good, and you want him to keep going in that direction.  This is just my opinion.  Its Flu and Cold season, and its so easy to pick up somebody else's bug.  The doctor said he is still in the accelerated phase of his CML.  Hope you do not mind my 2 cents.  I just want to see him do really good.

            Susan

          • Re: NATE'S AND MY JOURNEY
            Happycat Registered Users
            Currently Being Moderated

            Pat,

             

            Is there any reason for him to go back to work so quickly?  Is he running out of sick time or short-term disability?  Any way he could try to work from home??  It just sounds like he'd have a tough time of it with nausea and dizziness.  Is he able to drive?  There's no point getting into a car accident, too.

             

            One option he might consider is to see if he can break up the dose a bit.  Lots of people here take 4 x 100 mg pills each day, and find it is easier to manage the side effects.  Not sure if he is on 400, 600 or 800 mg, but just spacing the doses out a bit may help.  I'm also not sure if that is appropriate for someone in accelerated phase, but he can discuss that with the onc.

             

            Traci

             

             

            P.S.  I'm glad he has you there with him.  There's nothing better than having mom take care of you when you're sick.

            • Re: NATE'S AND MY JOURNEY
              natesmama Registered Users
              Currently Being Moderated

              HELLO EVERYONE.

                     I HAVE BEEN LURKING AND READING AND TRYING TO UNDERSTAND THE PROGRESSION OF THE DISEASE IN DIFFERENT PEOPLE...HOW THE GLEEVEC AFFECTS PEOPLE AND SO FORTH. YESTERDAY NATHAN'S CBC WAS COMPLETELY NORMAL. HIS WHITE, RED AND PLATELETS ALL WITHIN NORMAL RANGE , AND HIS SPLEEN IS NEARLY BACK TO NORMAL SIZE AS WELL.  2 WEEKS AGO HE BEGAN TO EXPERIENCE MAJOR EDEMA IN HIS LEGS, AND FEET, SO LAST WEEK THE DOC ADDED A DIURETIC AND CUT HIS GLEEVEC FROM 600 MG TO 400 MG. HE HAS NOT REGAINED HIS HEARING, AND HIS EYESIGHT IS BEING AFFECTED. HE STILL EXPERIENCES TIMES OF DIZZINESS AND HEADACHES, BUT HE SAYS HE CAN HANDLE IT. HE DOESN'T HAVE A CAR HERE IN THE CITY AND USES PUBLIC TRANSPORTATION, SO HE DOESN'T HAVE TO WORRY ABOUT DRIVING. THE HOSPITAL HERE ISN'T COVERED BY HIS INSURANCE FOR BMT, AND HIS DR REALLY FEELS THAT NATHAN WILL NEED ONE AT SOME POINT, SO I BELEIVE WE WILL BE TRAVELLING TO ANOTHER HOSPITAL FOR NATE TO BE EXAMINED AND GIVEN THEIR OPINION AS TO WHETHER HE WILL NEED ONE OR NOT.

                   I AM STILL HERE WITH HIM, BUT PLAN TO LEAVE AND GO HOME IN NOVEMBER.

                OH YEAH, HAS ANYONE ELSE ON HERE HAD NIGHT SWEATS AFTER THE CML WAS UNDER CONTROL?

                                                                                                                                                                                                                          THANKS FOR READING, PAT

              • Re: NATE'S AND MY JOURNEY
                CallMeLucky Registered Users
                Currently Being Moderated

                The night sweats are a common complaint, so by themselves I wouldn't be too worried about that.  Let the doctor know if the persist or get really bad.

                I'm not sure how you get from normalized counts and reduction in dosage of drug to needing a SCT.  Perhaps seeing another doctor is not a bad idea.  SCT should be last option.  If he is responding well to therapy, that should be the focus for now.

                Glad he is starting to come around and feel a bit better and that the drugs are working.

              • Re: NATE'S AND MY JOURNEY
                GerryL Registered Users
                Currently Being Moderated

                Hi Pat,

                 

                Good to hear from you again and great to hear Nate's counts are in the normal range again. I guess I'm a bit surprised with the doc talking about a BMT already when there are a few more drugs to try out if Gleevec doesn't work for Nate. I would definitely be getting a second opinion.

                 

                As to Nate's side effects - a few people here experience the night sweats as a side effect of the TKI and there are a few suggestions on one of the discussion threads that people might like to do to help counter it - mainly with sheets and clothing etc.

                I get edema mainly in my ankles (as I take my Gleevec in the morning and then sit at a desk all day), I've also tried to lower the salt in my diet - though I was never a big salt user to begin with. Nate should also make sure he drinks enough water throughout the day which will help flush the salt out. I take a diuretic when required. Nate should ensure they are keeping an eye on his potassium levels whilst taking the diuretic. I'm not sure if Tasigna has edema as a side effect.

                 

                Do they believe his hearing loss; eyesight issues; headaches and dizziness are related to his CML?

                • Re: NATE'S AND MY JOURNEY
                  natesmama Registered Users
                  Currently Being Moderated

                  THE HEARING LOSS WAS DEFINITELY THERE BEFORE HE WAS DIAGNOSED AND HASN'T IMPROVED SO, HE WILL BE SEEING AN ENT TO DETERMINE WHAT IS CAUSING IT. WE DISCOVERED HE HAD SEVERE MYOPIA AND SOME OTHER ISSUES WITH HIS SIGHT WHEN HE WAS TWO YEARS OLD. HE WEARS CONTACTS BUT EVEN WITH THEM IS NOT ABLE TO BE CORRECTED TO 20/20. NOW...SINCE THE GLEEVEC HE HAS SOME BLURRINESS AND HE SAID HIS CONTACTS HAVE A WHITE FILM ON THEM WHEN HE REMOVES THEM AT NIGHT AND THAT WAS NEVER THERE BEFORE. HE WAS EXPERIENCING A LOT OF DIZZINESS AND LIGHT-HEADEDNESS BEFORE DX. IT NEVER REALLY LET UP, SO WHETHER IT IS FROM THE CML OR NOW FROM THE GLEEVEC, WHO KNOWS? WE ARE PRETTY SURE THE HEADACHES OR PRESSURE ARE FROM THE GLEEVEC.

                  I AM CURIOUS AS TO WHY PEOPLE ARE SO AGAINST A BMT? I KNOW IT IS RISKY BUT LIVING WITH CML AND TAKING THE MEDS IS NO PICNIC, EITHER.

                  THANKS FOR ALL OF YOUR HELP.

                  • Re: NATE'S AND MY JOURNEY
                    CallMeLucky Registered Users
                    Currently Being Moderated

                    As one of the first oncologists I met said, regarding SCT, "you'll never be the same again".

                     

                    A SCT is a risky procedure and while many people do survive the process there are things to be considered post transplant that can be equal or more sever to TKI treatment.

                     

                    SCT as a life saving procedure certainly makes sense, but to electively have one as an alternative to life long TKI is risky.

                     

                     

                     

                    http://www.cancer.gov/cancertopics/factsheet/Therapy/bone-marrow-transplant

                     

                    The major risk of both treatments is an increased susceptibility to infection and bleeding as a result of the high-dose cancer treatment. Doctors may give the patient antibiotics to prevent or treat infection. They may also give the patient transfusions of platelets to prevent bleeding and red blood cells to treat anemia. Patients who undergo BMT and PBSCT may experience short-term side effects such as nausea, vomiting, fatigue, loss of appetite, mouth sores, hair loss, and skin reactions.

                    Potential long-term risks include complications of the pretransplant chemotherapy and radiation therapy, such as infertility (the inability to produce children); cataracts (clouding of the lens of the eye, which causes loss of vision); secondary (new) cancers; and damage to the liver, kidneys,lungs, and/or heart.

                    With allogeneic transplants, GVHD sometimes develops when white blood cells from the donor (the graft) identify cells in the patient’s body (the host) as foreign and attack them. The most commonly damaged organs are the skin, liver, and intestines. This complication can develop within a few weeks of the transplant (acute GVHD) or much later (chronic GVHD). To prevent this complication, the patient may receive medications that suppress the immune system. Additionally, the donated stem cells can be treated to remove the white blood cells that cause GVHD in a process called “T-cell depletion.” If GVHD develops, it can be very serious and is treated with steroids or other immunosuppressive agents. GVHD can be difficult to treat, but some studies suggest that patients with leukemia who develop GVHD are less likely to have the cancer come back. Clinical trials are being conducted to find ways to prevent and treat GVHD.

                    The likelihood and severity of complications are specific to the patient’s treatment and should be discussed with the patient’s doctor.

                  • Re: NATE'S AND MY JOURNEY
                    GerryL Registered Users
                    Currently Being Moderated

                    I think there have been a few people on the board who have experienced drier eyes from being on Gleevec, which may explain his issues with contacts. It might be worthwhile for Nate to talk to his next doctor about changing TKIs - one of the others might be easier on him side effect wise and they also work faster on the CML than Gleevec.

                  • Re: NATE'S AND MY JOURNEY
                    Happycat Registered Users
                    Currently Being Moderated

                    Personally, I'd rather try all the available TKIs first before going for SCT.  I'd definitely see another oncologist (preferably a CML specialist) if his current one says a BMT is in his future.  He hasn't been on any TKI long enough to really know, unless there was something about his diagnostic results that say otherwise.

                     

                     

                    Traci

                    • Re: NATE'S AND MY JOURNEY
                      natesmama Registered Users
                      Currently Being Moderated

                          I FEEL AS THOUGH I HAVE GIVEN THE WRONG IMPRESSION ABOUT NATE'S ONC. I INSTIGATED A DISCUSSION ABOUT BMT WHEN WE WERE AT THE OFFICE THE OTHER DAY. HE SAID IT IS A WORST CASE SCENARIO OPTION. I BELEIEVE THAT BECAUSE NATHAN WAS SO SICK AT DX HE JUST WANTS ALL OF THE DATA AVAILABLE. HE WANTS DONORS PREPARED, NATHAN'S HISTORY AND EVALUATION ON FILE AT THE BMT FACILITY,  AND NATHAN AND I TO UNDERSTAND ALL ABOUT IT. HIS HOPE IS THAT NATHAN WILL NEVER NEED A BMT. THE FACILITY WHERE WE WILL GO FOR THE EVALUATION HAS CML DRS THAT WILL CHECK EVERYTHING OUT AND DETERMINE THAT HIS ORIGINAL DX WAS ACCURATE AND TO SEE WHAT STAGE HE IS IN NOW. I PROBABLY CAN'T REALLY UNDERSTAND THE HORROR OF WATCHING A LOVED ONE GO THROUGH A BMT. I TEND TO FOCUS ON HOW I HATE TO SEE HIM FEELING MISERABLE AND ADDING NEW MEDS TO HIS DAILY REGIME TO COUNTERACT THE SIDE EFFECTS OF GLEEVEC AND  JUST  GET THROUGH EACH DAY.

                          EVEN AT DX WITH HIS WHITE COUNT OVER 600,000, HEARING LOSS, DIZZINESS, BLOATED FEET, ETC ETC, HE SMILED, SAID "I'M FINE" TO THE POINT THAT THE HOSPITAL KEPT RERUNNING TESTS TO MAKE SURE THAT WHAT THEY WERE SEEING WAS REAL. DRS AND NURSES LATER TOLD US THEY SAW NATHAN'S CHART AND DREADED COMING INTO HIS HOSPITAL ROOM THE FIRST TIME FOR FEAR OF WHAT THEY'D SEE. INSTEAD HE WAS NORMALLY SITTING UP IN BED WITH A SMILE ON HIS FACE AND LOOKING HEALTHY AND HAPPY.

                         NOW HE LOOKS AHEAD WITH SOME DREAD TO A LIFE OF PILLS AND MEDS AND DR'S APPOINTMENTS. WE NEED TO FOCUS ON THE FACT THAT THERE ARE TKI'S AND RESEARCH AND HIS BODY DID RESPOND WELL AND HE IS ABLE TO WORK. DIFFICULT TO DO SOMETIMES.

                          THANK YOU ALL FOR YOUR INPUT!!                                                                                                                                                                              PAT

                      • Re: NATE'S AND MY JOURNEY
                        Susan61 Registered Users
                        Currently Being Moderated

                        Hi Pat:  Sounds like your between a rock and a hard place as they say.  I do think some have to have the BMT due to their circumstances.  You can go back to one of my older posts, but basically when the routine treatment did not work for me back in 1998 they had me in having a BMT with a unrelated donor.

                        I had no match.  Then when I applied for the clinical trial for the Gleevec in 2000, and this was after seeing some top transplant doctors to get opinions.

                        The doctor who was running trial in N.Y. did not hesitate to tell me that he would not put me through a BMT when I had Gleevec to try first.  He felt it was the lesser of two evils for me.  Here I am still on Gleevec 11 years later.  Yes, I do still get side effects from it.  I might not see a cure in my lifetime, but I really believe all the younger people will get to see it happen.  Each year that passes new breakthroughs are being made for CML specifically.  New things are being introduced.  If Nate is doing that well, then give it a chance before considering a BMT.  Hope this helps you somewhat.

                        Susan

                      • Re: NATE'S AND MY JOURNEY
                        Trey Registered Users
                        Currently Being Moderated

                        For CML a BMT is done is when TKI drugs (all of them) fail to control the CML and it progresses to advanced stages, or the person is diagnosed in Blast Phase.  Nate's condition at diagnosis was dire, but he was likely still in Chronic Phase.  This may sound odd, but they are two different things.  Others who were not in a dire condition may have been diagnosed in Blast Phase.  One is a non-CML issue (in the sense of tissue damage, although caused by the CML) and one is a direct CML issue related to how the leukemic cells function (aggressive vs non-aggressive).

                         

                        Nate lost his hearing and damaged other tissue by having blood as thick as molasses.  Those are now medical issues, but not CML issues related to Phase.  If the TKI drugs work, then Nate will respond well to them and can control the CML.  Whether the damaged tissues will be restored is another matter.  Maybe they will be over time.  These things are unpredictable.

                         

                        Taking TKI drugs for the long term is seen by some as a heavy weight around the neck.  Others see it as a lifeline.  Sometimes it is a matter of perspective.

                      • Re: NATE'S AND MY JOURNEY
                        GerryL Registered Users
                        Currently Being Moderated

                        Hi Pat,

                        I tend to think of the TKIs as a means to an end i.e. they keep the CML at bay until the scientists come up with a cure. For me I now only see my Hematologist twice a year and though I get a few side effects, they are reasonably manageable.

                        Hopefully Nate continues to improve and as he does he will regain some optimism about life again. The diagnosis itself is enough to make you feel like your life is spinning out of control, but the issues he has had along with it would make it seem doubly so.

                         

                        Take care.

              • Re: NATE'S AND MY JOURNEY
                Susan61 Registered Users
                Currently Being Moderated

                Hi Pat:  Glad to see the good news about Nate.  A lot of people have complained about the night sweats on and off.  It seems like you find new side effects at different times, and they are not always constant in some cases.  Please keep us updated, even after you go back home in Novemember.  I will continue to pray for Nate and his great response.

                Susan

  • Re: NATE'S AND MY JOURNEY
    Happycat Registered Users
    Currently Being Moderated

    Hi, Pat, and welcome.  I'm glad you saw your son and urged him to go to the doctor.  Who knows how long it would have taken him otherwise?  I hope he is doing better and feeling better, although the first few months on Gleevec can be painful.  Luckily, for most of us, the pain subsides within the first 3-4 months.  Most of mine was gone within the first 6-8 wks.  I do hope he is on allopurinol, since his body has a huge glut of dead WBC to clear out of there.

     

    There is a lot to learn here, so I urge both of you to get on and check it out.  Trey has put together some very nice info for the newly diagnosed.  And he is often posting other useful info on different topics, too.  Get on any time you have questions or just need to talk.  And encourage your son to get on, too.  There are lots of people here about his age who can commiserate with them, suddenly feeling old at 31.  I know I felt old and decrepit at first, because the Gleevec really hit my joints.  But I don't have much of that now.

     

    Traci

  • Re: NATE'S AND MY JOURNEY
    jones2641 Registered Users
    Currently Being Moderated

    Hi fellow Mama Bear,

    I'm glad Nate has  you and I'm glad your journey lead you to this discussion board. My husband is 4 years from diagnosis and I understand the overwhelming feelings you're having to process from a Caregiver's point of view. I too am new to the discussion, but I'm learning so much. I understand your concern with the medications and I once shared your thoughts. But, 4 years later I can tell you Gleevec is an awesome drug. I know everyone is different, but from our experience My Ray has tolerated the drug very well (side effect wise). You're probably being bombarded w/info and data and opinions and everything that comes w/ learning about CML, but hang in there. I will pray for you and your Nate. Keep us posted.

     

     

     

    <3 Mojo

  • Re: NATE'S AND MY JOURNEY
    Susan61 Registered Users
    Currently Being Moderated

    Hi Pat:  I agree with everyone else that Nate is responding well.  When things stabilize more for Nate, he should join in with the discussions that we have on here.  He will get a lot of good information and support.  He will see people who are newly diagnosed like he is, and that will really help him.

    If he does not want to join in, please feel free to keep in contact with us to share how well he is doing.

    I have had CML for almost 13 years, and on Gleevec 11 years.  It is a miracle drug for so many of us.

    Glad you posted to us, and I think the responses have made you feel better and understand better how the process goes with the treatment of CML

    Susan

  • Re: NATE'S AND MY JOURNEY
    tranier Registered Users
    Currently Being Moderated

    Hi..please use what we have learned from BJ s journey to guide you....

      1.  See a CML specialist..if not one local then get w one for second opinion and be sure all testing sent to him,her too

      2.  Most CMLrs  will not need a SCT..there are TKI choices...try them all if need be

      3.  Sign up on Be the Match esp if insurance covers it...and know if you have matches..if God forbid you would need it in future...It is a 4 month process at best, and in BJs  case losing our first donor led to what looks like a 2nd relapse and a month's delay as second donor had work-up

    4.  Get a 2nd opinion...always...way to much data and amazing specialists to not take advantage of

    5.  Be more aggressive than the CML!!!!!!!!!!

     

    6...7..8..9..10...ASK QUESTIONS!!!!!   If you don't know what to ask...seek advise here...

     

    hope this helps...Peace and prayers to all

    • Re: NATE'S AND MY JOURNEY
      natesmama Registered Users
      Currently Being Moderated

      HEY EVERYONE.

         IT HAS BEEN A WHILE SINCE I HAVE UPDATED NATHAN'S STATUS SO I THOUGHT I'D WRITE SOME THINGS TONIGHT. I HAVE RETURNED HOME FOR NOW BUT BEFORE I CAME HOME, NATHAN AND I WENT TO THE "JAMES" HOSPITAL IN COLUMBUS, OHIO FOR A CONSULTATION IN CASE HE EVER NEEDS A BMT. THE DOCTOR WE SAW THERE SAID SHE HAD NEVER SEEN NATHAN'S RECORDS BEFORE WE GOT THERE AND KIND OF RIDICULED THE SLIDES AND NOTES WE HAND CARRIED THERE AS A BACK-UP. SHE SAID SHE DOUBTED VERY MUCH THAT NATHAN HAD CML IN THE ACCELERATED STAGE. SHE SAID SHE DOUBTED HE'D NEED A BMT AND SHE CERTAINLY WOULD'T ADVISE ONE. SHE DID ORDER SOME BLOOD TESTS. NATHAN'S WBC HAS DROPPED TO 2900 FROM THE HIGH OF 640,000 SINCE SEPT 3RD.

         WHEN HE WENT TO HIS ONCOLOGIST FOR THE NEXT APPOINTMENT AFTER OUR TRIP TO COLUMBUS HIS DR SAID THAT THE TESTS TAKEN IN COLUMBUS VERIFIED THE CML ACCELERATED DIAGNOSIS. APPARENTLY THE GLEEVEC IS KILLING OFF WHITE BLOOD CELLS BUT NOT PREVENTING THE DEVELOPMENT OF NEW "BAD" CELLS. HE SAID NATHAN NEEDS TO BE ON A STRONGER DOSE OF GLEEVEC BUT SINCE  HIS BODY IS RESPONDING LIKE IT IS WITH THE 400MG DOSAGE HE DOESN'T DARE RAISE IT. HE PRETTY MUCH SAID A BMT IS INEVITABLE. NATHAN'S 3 SIBLINGS JUST DID THEIR TESTS TO SEE IF THEY ARE COMPATIBLE MATCHES FOR A TRANSPLANT. EACH ONE IS HOPING AND PRAYING THAT THEY ARE A MATCH. I WISH MOMS COULD MATCH.

         THE GOOD NEWS IS HIS SPLEEN IS NEARLY BACK TO NORMAL, HE LOOKS LESS EMACIATED, HIS PULSE IS MORE EVEN, HE CAN EXERCISE SOME WITHOUT GASPING FOR BREATH, AND HE IS ABLE TO WORK. ON THE DOWNSIDE, HE NOW TAKES 4 MEDS TO COUNTER-ACT THE SIDE-EFFECTS OF THE GLEEVEC, STILL SUFFERS HEARING LOSS AND FIGHTS DEPRESSION AND FATIGUE.  BUT HE IS ALIVE AND THERE IS MUCH HOPE!!!

      • Re: NATE'S AND MY JOURNEY
        janne Registered Users
        Currently Being Moderated

        Nate's Mama,


        God Bless you and your family as you walk though this !  Do know that we are all believing, praying and hoping right along with you ! There are so many on this site who have had such a struggle in the beginning and they can certainly empathize with your son's journey and can offer words of wisdom, strength and hope to you ! We are cheering you on Nate !

        Janne

      • Re: NATE'S AND MY JOURNEY
        Trey Registered Users
        Currently Being Moderated

        You should ask the Onc to explain why he believes the following are true:

         

        "HIS DR SAID THAT THE TESTS TAKEN IN COLUMBUS VERIFIED THE CML ACCELERATED DIAGNOSIS" -- You did not indicate that a Bone Marrow Biopsy was done at the Columbus hospital, so how did "blood tests" confirm an Accelerated Phase diagnosis?  That is not possible without a BMB (especially after the WBC and spleen have returned to normal).

         

        "HE PRETTY MUCH SAID A BMT IS INEVITABLE." -- Why?  What part of Nate's diagnosis shows that he has long term high risk factors?  The high initial WBC is not the primary indicator of CML Phase.  It is important to understand the "why" part of this, since entering into a transplant should normally be a last resort.

         

        "APPARENTLY THE GLEEVEC IS KILLING OFF WHITE BLOOD CELLS BUT NOT PREVENTING THE DEVELOPMENT OF NEW "BAD" CELLS." -- That is just the way the drugs work for all of us.  Nothing unusual in that.

        • Re: NATE'S AND MY JOURNEY
          natesmama Registered Users
          Currently Being Moderated

          HI GUYS,

              OK SOME HOW EVERYTIME I GET ON HERE AND WRITE I FEEL LIKE I HAVE WRITTEN IN A LANGUAGE THAT ISN'T UNDERSTOOD, AND SINCE YOU  ALL HAVE BEEN HERE LONGER THEN I, I GUESS IT IS MY WRITING THAT IS CAUSING THE MISUNDERSTANDING AND CONFUSION. SO I AM GOING TO TRY TO START OVER OR CORRECT THINGS OR SOMETHING.

              1. NATHAN IS MY 31 YEAR OLD SON.

              2  HE WAS DIAGNOSED WITH CHRONIC MYLOID LEUKEMIA SOMETIME IN THE FIRST COUPLE OF WEEKS OF SEPTEMBER.

              3  HE WAS TOLD HE WAS IN THE ACCELERATED STAGE, VERIFIED BY TESTS THEY HAD DONE ON HIS MARROW.

              4  THERE WAS NO LIQUID IN HIS MARROW SO THEY COULD NOT DO A FISH TEST.

              5. HE WAS PRESCRIBED 600 MG PER DAY OF GLEEVEC.

              6. MOST OF HIS SYMPTOMS DISAPPEARED RAPIDLY

              7. WHEN HIS SIDE AFFECTS GOT WORSE AND HIS WBC DROPPED HE WAS PUT BACK TO 400MG OF GLEEVEC.

              8. THE TEAM OF ONCOLOGIST/HEMATOLOGISTS BEGAN TALKING TO HIM ABOUT BMT AS SOON AS HE WAS DIAGNOSED.

              9. BECAUSE THE HOSPITAL THERE WS NOT ON HIS INSURANCE'S LIST OF PREMIER TRANSPLANT HOSPITALS HE WAS REFERRED TO THE JAMES          CANCER HOSPITAL IN OHIO.  

            10. AS I SAID BEFORE, THE DR WE SAW THERE IN OHIO HADN'T READ NATHAN'S CHART OR HISTORY AND HAD NOT LOOKED AT THE PATHOLOGY           SLIDES OF NATHAN'S MARROW THAT HAD BEEN SENT, SO SHE DOUBTED THE DIAGNOSIS. HOWEVER AFTER SHE HAD A CHANCE TO STUDY             THEM AND READ THE HISTORY, SHE CONCURRED WITH THE FLORIDA DRS........I HAD SAID THAT SHE CAME TO THAT CONCLUSION AFTER THE           BLOOD TESTS THEY TOOK THERE, FORGETTING ABOUT THE SLIDES.

            11. ALL OF NATHAN'S SIBLINGS HAVE BEEN TESTED AND NONE ARE MATCHES.

             12  THEY ARE GOING TO BE CHECKING THE REGISTRY OVER THE WEEKEND.

            13. HIS WBC IS DOWN TO 2800 AND HIS PLATELET COUNT HAS STARTED TO DROP.

             14  HE HAS HAD A MILD COLD FOR TWO WEEKS, AND HE IS FATIGUED.

            15. GOOD NEWS? YEAH...HE IS OFF THE DIURETIC AND THE HEART MEDS, AND THE EDEMA AND HEART RATE ARE GOOD.

             16. I KNOW THAT WRITING IN CAPS IS CONSIDERED SHOUTING ON THE COMPUTER, BUT I CAN SEE MY TEXT BETTER AND IT IDENTIFIES ME. MAYBE         I AM SHOUTING........ AFTER ALL I CAN'T DO IT FOR REAL

              17. THANKS FOR READING, AND CARING.

      • Re: NATE'S AND MY JOURNEY
        castlefibers Registered Users
        Currently Being Moderated

        if i were you and nate, i'd seriously consider a new oncologist. you've gotten a second opinion that basically said, your son's Dx was not accelerated stage CML that needed a transplant. it sounds to me like your son is responding reasonably normally to Gleevec. i'm living with a whole host of side effects. none are fun, but most are livable. depression is not an unusual result of a diagnosis with a very serious chronic disease. i went to counseling. it helped a lot.

         

        part of what you need is to see the actual records of all the tests that were done upon diagnosis in order to really know whether he is at accelerated stage or not.

         

        as a general rule tho: BMT is not inevitable for anyone as far as i can tell. there are some people who respond poorly to the various meds that are currently available, but generally speaking people go through all the available meds to see if they will work before even looking at BMT. (i guess there are specific cases where from the number of mutations, it is obvious from the beginning that BMT is the only option--but even then you and your son need the information to be clear about WHY they believe BMT is the only option)

         

        By the way: it is really hard to read all capital letters. You should probably take your caps lock OFF so that it is easier for everyone to read AND it doesn't appear you're yelling (on the internet all capital letters is often read as yelling).

      • Re: NATE'S AND MY JOURNEY
        CallMeLucky Registered Users
        Currently Being Moderated

        I'm sorry, but I'm a bit confused. If I understand what you wrote, you are saying that you weant to see a specialist for a second opinion, the specialist said it is not Accelerated phase and a transplant was not recommended. Then you went back to the local oncologist who said it is accelerated phase and he will need a transplant, in spite of the fact he is responding to treatment.

        This was what my doctor warned me about when I went for my second opinion.  She said I could stay with the local doctor and he could contact her for advice on my case, but if he didn't agree then I would be on the treatment plan the local oncologist wanted.  That is why I decided to be treated by the specialist.

        Something about this local oncologist you have just doesn't sound right.

  • Re: NATE'S AND MY JOURNEY
    Ludwigh Registered Users
    Currently Being Moderated

    Hello Nate's Mom, I think the important thing here is not to get too hung up on the phase at diagnosis. As long as he was not in Blast Crisis and does not have extra mutations or translocations than the original Philadeplia chromosome that render all forms of TKI's useless or makes the desease unstable. The key is how he respounds to the TKI's, not so much what phase he was diagnosed in. There are other forum members who were diagnosed in Acc. phase and are doing fine.

    I was diagnosed over three years ago. I had a platelet count of 1.2 million, White Blood Cell Count was at 200,000. Blasts at 8% and basophils as 22%. I was diagnosed at borderline accelerated, phase. I was on Gleevec for one year and then my platelets started to rise, the CML (BCR/ABL) came back slowly, with no rise in blasts.  A mutation was found (probably there since diagnosis) that respounded weekly to Gleevac. I was switched to Sprycel and within 4 months I was PCRU and have remained there ever since. I am hearing of trials that people who have been PCRU for two year or more regardless of phase are being tapered off Sprycel and are remaining either desease free or at least it is staying at a very low level. This gives us all great hope. Not sure if I would take that leap as the side effects have been very minimal.

    Check out www.newcmldrug.com as there is lot of members on there who were diagnosed at different phases and many have dealt with it for many years and some have went throught 3 or 4 different threatments before finding the one that worked. There is even a member that sprycel brought him back from blast crisis with Chloromas (White Blood Cell Tumors) and he is doing fine. These drugs have worked wonders for most.

     

    As far as the Stem Cell Transplant, it is a risky proceedure and I would only look at as a last resort. It is much improved from even 5 years ago and improving all the time, however there is a lot of things that can go wrong. There has been a few members of this forum, that after finding that the TKI's did not work, had to proceed to transplant. Most are okay and have moved on and do not post on the forums anymore. An option of treatment, however it should be reserved only when all other treatments have been explored.

     

    Hope and Light,

    Terry

    • Re: NATE'S AND MY JOURNEY
      natesmama Registered Users
      Currently Being Moderated

      I JUST REREAD YOUR RESPONSE AND I WANT TO THANK YOU FOR THE HOPEFUL TONE OF YOUR LETTER. IT IS HEARTENING TO READ OF THOSE WHO WERE REALLY BAD AND HAVE RESPONDED. I PUT IN A CALL TODAY TO NATHAN'S DOC TO ASK HIM WHY THEY WEREN'T TRYING THE OTHER TKIS ON NATHAN. HE WASN'T THERE BUT I WAS ASSURED THAT HE WILL CALL ME BACK. I GUESS THE HARDEST THING IS BEING SO FAR AWAY AND KNOWING THAT HE DOESN'T REALLY HAVE ANYONE NEARBY. ANYWAY, THANKS FOR THE ENCOURAGEMENT FROM EVERYONE.

      • Re: NATE'S AND MY JOURNEY
        GerryL Registered Users
        Currently Being Moderated

        Hi Nate's mom,

        We can understand that it can be as hard on the partner/parent/child/sibling of the person with the diagnosis, particularly when you're far away from your loved one

        Figured there must have been a reason why you were using caps all the time (apart from feeling the need to yell at the injustice of it all).

        Putting together dots points for what is happening with Nate is probably the way to go as he has a bit going on.

        Let us know what the doc says about trying another TKI.

         

        By the way, pop your name in at the bottom of your message - you are part of Nate's journey and need support as well.

         

        Take care

        Gerry

        • Re: NATE'S AND MY JOURNEY
          natesmama Registered Users
          Currently Being Moderated

          HI EVERYONE.

              HOPE YOU ALL HAD A WONDERFUL CHRISTMAS AND THAT 2012 IS TREATING YOU WELL. I WILL TRY TO UPDATE YOU ON NATE, BRIEFLY. A COUPLE OF WEEKS AGO HE WOKE UP WITH A VERY SWOLLEN ARM. HE SAID IT LOOKED PRETTY MUSCULAR AND GOOD BUT SINCE IT DIDN'T MATCH THE OTHER SIDE IT WAS PROBABLY NOT A GOOD THING. OF COURSE, HE GOT DRESSED AND WENT TO WORK, BUT HIS COLLEAGUE TOOK ONE LOOK AND SAID "CALL YOUR DR OR I WILL". HE CALLED, THE DOC, AND FEARFUL OF A BLOOD CLOT THE DR SAID FOR HIM TO GO TO THE OFFICE SO HE COULD ORDER A VENUS DOPPLER TEST. THAT WAS NEGATIVE SO THEY ADMITTED HIM AND STARTED TREATING HIM FOR CELLULITIS. HE WAS IN 2 FULL DAYS TO GET IV ANTIBIOTICS  THE NEXT WEEK THE DR HAD HIM COME IN FOR A CHECK UP. THEY RERAN ALL OF THE BLOOD TESTS THAT THEY RAN AT DIAGNOSIS. THE RESULTS WERE THE SAME. ALSO WHEN HE WAS IN THE HOSPITAL THEY DISCOVERED THAT HIS LIVER IS BEGINNING TO REACT POORLY TO THE GLEEVEC.  THEY HAD HIM GO OFF IT FOR 3 DAYS TO GIVE HIS BODY A LITTLE REST. HE SAID HE HAD FORGOTTEN HOW GOOD HE FELT WITHOUT IT. SOOOOOO......THAT IS THE LATEST NEWS. I AM ANXIOUS TO GET BACK DOWN THERE AND SEE HIM FOR MYSELF!!!!

          THANKS AGAIN FOR ALL OF THE SUPPORT AND KNOWLEDGE THAT I GAIN FROM THIS SITE.                                                           

                                                                                                                                                                        SINCERELY,

                                                                                                                                                                   NATESMAMA  PAT

          • Re: NATE'S AND MY JOURNEY
            GerryL Registered Users
            Currently Being Moderated

            Hi Pat,

            I'm so sorry to hear Nate's having more issues. I can understand how anxious you must be, being so far away from him and hope you are able to get there soon. Are the doctors considering switching Nate to Sprycel?

             

            Gerry

          • Re: NATE'S AND MY JOURNEY
            hannibellemo Registered Users
            Currently Being Moderated

            Hi, Pat,

             

            Liver toxicity on Gleevec is not unheard of but it is one of the more rare side effects so, of course, I developed it. One day my AST/ALT were around 20 and the next check up they were 80 and three weeks later they were 1200! I felt fine BTW, the only indication that things were not as they should be was the increase in the ALT/AST, my liver was not enlarged or showing any other signs of damage according to a cat scan - I didn't have a biopsy. I was immediately taken off Gleevec (this was in my 8th month of taking Gleevec) and after my enzymes returned to normal (about 7 weeks) I was put on Sprycel. Sadly, just when I was taken off G my tests showed as I was, for all practical purposes, CCyR.

             

            I've been on Sprycel since 10/2009 and MMR since 8/2010. My counts at dx were WBC 348,000 and PLT 1.25 million.

             

            Your son has a serious case of denial and it's fortunate for him that he has a great mom and good friends and colleagues looking out for his best interests. I know how hard it is for you because I have a son who is struggling with addiction. If we could only live their lives for them it would be so much easier on us!

             

            Holding you both close in my thoughts,

             

            Pat (one to another)

            • Re: NATE'S AND MY JOURNEY
              natesmama Registered Users
              Currently Being Moderated

              HI GUYS.

                    HERE IS THE CAPS LADY, IRRITATING YOU ALL BY 'YELLING" AT YOU. THOUGHT I'D GIVE YOU AN UPDATE ON NATE. WHEN HE WENT BACK TO HIS ONC AFTER HIS HOSPITAL  THEY DREW A LOT OF BLOOD AND RAIN SEVERAL TESTS. ONE WAS A FISH TEST. HIS DOC CALLED HIM A WEEK LATER TO TELL HIM THAT ACCORDING TO HIS TEST RESULTS, THE GLEEVEC DIDN'T SEEM TO BE DOING ANYTHING TO TO ACTUALLY TREAT THE DISEASE.  HE HAD HIM RETURN IN 4 WEEKS FOR A CHECK-UP AND CBC. THAT WAS LAST MONDAY. HIS PLATELETS HAD PLUMMETED. THEY WERE ABOUT 28,000. THEY HAD NATHAN GO OFF THE GLLEVEC FOR 9 DAYS AND TODAY HE WENT FOR ANOTHER CBC. THE PLATELETS HAD DROPPED LOWER, THOUGH NATHAN DIDN'T TELL ME HIS COUNT. HE SAID WBC AND HEMOGLOBIN WEREN'T "TOO BAD"  THE DR WAS UPSET AND ORDERED A BMB TOMORROW. NATHAN HAD ASKED HIM LAST WEEK ABOUT TRYING ONE OF THE OTHER TKI'S. HE SAID I HAVE CONSIDERED THEM BUT YOU ARE NOT A GOOD CANDIDATE. I WISH I WAS DOWN THERE TO STICK MY NOSE IN!!!!!!!!!

                 ALSO SOMETHING ELSE I HAD FORGOTTEN OR WAS UNAWARE OF THE SIGNIFICANCE....WHEN NATHAN WAS ORIGINALLY DIAGNOSED, BACK IN SEPTEMBER, ONE OF THE REASONS HE WENT TO THE DR WAS BECAUSE HE HAD A LARGE SWELLING ON THE TOP OF ONE FOOT THAT WE THOUGHT WAS A BUG BITE. THEY LANCED IT AND DID A BIOPSY  OF THE BLOOD INSIDE IT AND IT CONTAINED LEUKEMIA CELLS. NATHAN SAID THAT ONE OF HIS DRS TOLD HIM THAT THAT IS HOW THEY KNEW HE WAS IN ACCELERATED STAGE AT THE TIME.  DOES THIS MAKE SENSE?

                 I READ AND READ AND READ ON THIS SITE AND THE MORE I READ THE DUMBER I FEEL. IN FACT AS I READ OVER SOME OF MY OWN PREVIOUS POSTS, I REALIZE THAT ON SOME POINTS I REALLY DIDN'T KNOW OR UNDERSTAND WHAT I WAS TALKING ABOUT.:(  THANKS FOR THE GRACIOUSNESS OF EVERYONE WHO CONTRIBUTES.

                  ANYWAY, ANY KNOWLEDGE, HELP AND PRAYERS ARE APPRECIATED.

                 THANKS

                                                                                                                                                                          NATESMAMA, PAT

              • Re: NATE'S AND MY JOURNEY
                Trey Registered Users
                Currently Being Moderated

                Anyone who does not respond well to Gleevec is a "good candidate" for either Sprycel or Tasigna.  Nate should demand a switch in drugs or a switch Oncs.  Probably both.  For Nate I would suggest Sprycel.  The mass of leukemic cells in tissue is called a Chloroma.  It is possible that is the issue with his arm.  It can be one sign of disease acceleration if there are other signs as well, such as high blast count, etc.  He needs to switch drugs right away.

                • Re: NATE'S AND MY JOURNEY
                  natesmama Registered Users
                  Currently Being Moderated

                  THANKS TREY, THEY JUST ADMITTED HIM FOR A PLATELET TRANSFUSION AND THE BMB. DO YOU HAVE ANY KNOWLEDGE OR PROTOCEL? ONE OF OUR FRIENDS KEEPS PUSHING IT AS AN ALTERNATIVE TREATMENT PLAN.

                  • Re: NATE'S AND MY JOURNEY
                    Trey Registered Users
                    Currently Being Moderated

                    Protocel (Cancell) is just another vitamin.  It was tested by the FDA years ago and found to be ineffective in treating cancer.  Our disease is a genetic mix-up, not a vitamin deficiency.  Nothing wrong with vitamins, and I take the standard vitamins for general nutrition, but not for any other reason.  The TKI drugs are the real miracle, so why look for another? 

                  • Re: NATE'S AND MY JOURNEY
                    GerryL Registered Users
                    Currently Being Moderated

                    Hi Pat,

                    This must be so hard on you emotionally - prayers and (((hugs))) to both you and Nate.

                    If it was me I would be looking to change doctors and TKIs. I haven't changed TKIs (touch wood), but have changed my specialist to someone I was more comfortable with. One of the main things I have learned from my CML experience is that you have to be your own Advocate or if you aren't able, have someone in your corner who can take this on. Are you able to get back over to him as it sound like he needs some help in dealing with the doctors?

                • Re: NATE'S AND MY JOURNEY
                  natesmama Registered Users
                  Currently Being Moderated

                  TREY DO YOU OR ANYONE UNDERSTAND THIS: THEY ADMITTED NATE YESTERDAY, GAVE HIM 6 UNITS OF PLATELETS OVERNIGHT AND PERFORMED A BMB THIS MORNING. THEY DOC WALKED THE SAMPLE TO THE LAB HIMSELF, HE SAID THEY COULD HAVE RESULTS TODAY. WHEN HE FINALLY GOT BACK TO THEM THIS EVENING, HE SAID THAT THE MARROW WAS TOO DILUTED SO THEY WERE GOING TO HAVE TO EXAMINE THE BONE TO GET THE RESULTS.  WHAT DOES THAT MEAN? ALSO, HOW SOON DOES THE PLATELET COUNT RISE AFTER RECEIVING A PLATELET TRANSFUSION. THEY DISCHARGED HIM BUT HE HAS TO GO BACK TO THE DR MONDAY.

                                                                                                                                                                     THANKS,  PAT

                  • Re: NATE'S AND MY JOURNEY
                    Trey Registered Users
                    Currently Being Moderated

                    The marrow being "too diluted" means he has very few cells in the marrow (hypocellular).  So apparently he is not producing many blood cells.  That makes a cytogenetics analysis difficult to do.  "Examine the bone" means that they will examine the bone fragment that was taken out when the needle pierced through his hip.  The BMB needle is hollow, and it cuts out a round core sample of the bone and cells that cling to it as it goes through the hip bone.  That may have some clues.

                     

                    The platelet infusions are an immediate change.  The only issue is that the spleen "sequesters" (grabs and holds) platelets and only lets them out when it thinks they are needed (bleeding).  So the actual blood platelet count may not be very high, but as long as the spleen has enough, it should be fine. 

                    • Re: NATE'S AND MY JOURNEY
                      natesmama Registered Users
                      Currently Being Moderated

                      THANKS TREY!!!!!

                      • Re: NATE'S AND MY JOURNEY
                        natesmama Registered Users
                        Currently Being Moderated

                        NATHAN WENT TO THE DOC WEDNESDAY TO GET RESULTS FROM HIS LAST BMB AND THEY SAID THEY COULDN'T DETERMINE A DIAGNOSIS FROM THE SAMPLE SO HE GOES FOR ANOTHER BMB MONDAY. HIS PLATELETS WERE STILL LOW, 21, EVEN AFTER A TRANSFUSION.

                    • Re: NATE'S AND MY JOURNEY
                      natesmama Registered Users
                      Currently Being Moderated

                      SINCE NATHAN'S LAST BMB WAS INCONCLUSIVE, THEY DID ANOTHER TODAY. HIS PLATELET COUNT IS DOWN TO 14000 SO THEY ARE ADMITTING HIM TO TRANSFUSE. I AM REALLY CONCERNED.                                                                                                                    PAT

                      • Re: NATE'S AND MY JOURNEY
                        Happycat Registered Users
                        Currently Being Moderated

                        Sorry, Pat, I don't know enough about this to comment on the platelets, but I can understand how worried you must be. Are you there with him?  Or are you only getting info over the phone?  Are you getting it from Nate or the doctor directly?  That's the advantage of being there, you can listen in and comment, ask questions.

                         

                        My best wishes to you and Nate.

                         

                         

                        Traci

                    • Re: NATE'S AND MY JOURNEY
                      natesmama Registered Users
                      Currently Being Moderated

                      HEY TREY, I'VE GOT SOME MORE QUESTIONS. WHAT OTHER CHROMOSOME CAN BE INVOLVED IN CML? IN NATHAN'S MOST RECENT BMB THEY SAID THEY FOUND A THIRD CHROMOSOME INVOLVED THANKS FOR ANY INFO...............PAT

                      • Re: NATE'S AND MY JOURNEY
                        Trey Registered Users
                        Currently Being Moderated

                        You will need to get some clarification, since the "third chromosome involved" could mean one of several different things.  One possibility is that Nate's Philadelphia Chromosome is a 3-way translocation.  So instead of just 9 and 22 swapping pieces, a third chromosome could have gotten in the middle, such as chromosome 15 for example; then the Philadelphia Chromosome would be a 9, 15, 22 translocation instead of the standard 9,22 translocation (15 is just an example, and there could be several other possible third chromosomes involved, if this is what the Onc meant).  Another possibility is that Nate has some other chromosome mutation outside of the Philadelphia Chromosome, such a Trisomy 8 (an extra copy of chromosome 8) or Monosomy 7 (a deletion of one of the chromosome 7 pair).  These are written +8 and -7 respectively, and I would expect one of these extra mutations is what the Onc means.  There could be other possible meanings.  So you need to ask and write it down.  Better yet, get copies of test reports.

                        • Re: NATE'S AND MY JOURNEY
                          natesmama Registered Users
                          Currently Being Moderated

                          HELLO TREY AND EVERYONE ELSE AS WELL. IT HAS BEEN MONTHS SINCE I'VE BEEN ON HERE. SINCE THEN, NATHAN'S PLATELETS PLUNGED AND THEY TOOK HIM OFF THE TASIGNA.  HE WAS OFF MOST OF THE SUMMER AND HIS PLATELETS SLOWLY ROSE. HE MET WITH A TRANSPLANT TEAM AND TURNED DOWN THE TRANSPLANT AT THAT TIME. THE DOCTOR SAID THEY WOULD REVISIT IT IN NOVEMBER. LATE AUGUST THEY DR PUT HIM BACK ON TASIGNA STARTING WITH 200 MG AND RAISING IT EVERY TWO WEES. HE HAS NOW BEEN ON 800 MGS FOR 2 WEEKS AND SO FAR HIS PLATELETS HAVE ACTUALLY GONE UP AND HIS WBC HAS STAYED STEADY AT NORMAL RANGES. HE HASN'T HAD A BMB FOR SEVERAL MONTHS BUT THE LAST IN DEPTH BLOOD TEST SHOWED THE PHL CHROMOSOME DOWN TO 25%. HIS MAIN CHANGE HAS BEEN THAT HIS BLOOD PRESSURE IS RUNNING HIGH. THE DR DOESN'T SEEM CONCERNED ABOUT THAT THOUGH. IS THAT A SIDE EFFECT OF TASIGNA? HIS DR (ONC) WAS HEARTBROKEN WHEN HE TURNED DOWN THE BMT IN MAY. THEY TOLD HIM HE HAS 1 TO 3 YEARS TO LIVE WITHOUT ONE. I AM HOPEFULLY GOING DOWN IN NOVEMBER TO GO TO HIS NEXT APPOINTMENT WITH THE TRANSPLANT TEAM. HE HAS BEEN THINKING ABOUT HAVING ONE BECAUSE HE HAS A SIGNIFICANT OTHER TO LIVE FOR NOW. WE (HIS FAMILY) HAVE TOLD HIM THAT WE SUPPORT WHATEVER HE DECIDES.

                               SO-O-O-O THAT'S THE UPDATE ON NATE. HOPE ALL OF YOU FOLKS ON HERE ARE DOING WELL AND HANGING IN THERE. THANKS FOR LISTENING

                                                                                                                                                                                                                  NATESMAMA,    PAT

                          • Re: NATE'S AND MY JOURNEY
                            Trey Registered Users
                            Currently Being Moderated

                            I re-read all your posts just to make sure I didn't miss anything.  Nate's journey has been an unusual one with a rocky start, odd symptoms, secondary health problems, and questions over his CML Phase.  Theseare the main reasons why the Onc wants to do the transplant.  Plus Nate has a hard time staying on a drug (very low platelets) long enough to respond well. 

                             

                            But Nate's FISH reached 25% at one point, so he CAN RESPOND to the drugs (sorry for shouting -- a little joke there).  And his blood counts normalized, but went too low.  So there is still enough reason to believe that if he can stay on a drug, that he might respond well enough longer term.  So is a BMT necessary, given the risks?  I do not know, and neither does anyone else.  It is a decision, not an algorithm with lots of known numbers and facts.

                             

                            Regarding the transplant issue, it is not an easy answer.  Oncs like BMTs in unusual cases since they do not know what lies ahead for Nate.  But if an Onc had this choice for his own child, I wonder what he would do.  Just wondering out loud.  But offering a transplant means nothing if you do not have a very good match already identified.  Nate's siblings are not a match, so he would need to find an unrelated donor.  To me, I could never say yes or no to a BMT unless I saw the matches that were offered.  But the Onc seems to want a commitment first, and then a matching process.  I would say "show me the matching options, then I will decide". 

                             

                            For me personally, if I were in Nate's situation, I would likely resist the BMT since there is adequate response to the drugs, and reasonable hope that he can remain on one of them, although it may require transfusions.  The other issue is that Nate's overall health may not be strong enough right now for a BMT.  He has been having heart related issues (unknown cause) and has possible damage from the 600K WBC that caused oxygen deprivation to his organs.  So overall, the Onc may think that a BMT is needed, but Oncs think a BMT is just another treatment option.  To me it is a last resort.  That is how I look at it.

                             

                            You can read more about BMTs here:

                            http://community.lls.org/docs/DOC-1375

              • Re: NATE'S AND MY JOURNEY
                Happycat Registered Users
                Currently Being Moderated

                Pat,

                 

                I agree w Trey. Time for a new drug and new onc. Quickly, too. I don't know why his onc would tell him he's not a good candidate for tasigna or sprycel. Definitely seek a second opinion with a specialist in Cml.

                 

                I understand the mama bear desire to get pushy and protect your cub. Run with it. Maybe your son is not feeling well enough to move to a new onc on his own?  Takes energy, maybe he needs a little help?  I know when I was really sick w e coli, I was not a good advocate for myself. Just felt too sick to argue. Might be an issue for him. Can you be a pushy mom and just, oh, research and contact some oncs for him? 

                 

                Traci

  • Re: NATE'S AND MY JOURNEY
    Jack Registered Users
    Currently Being Moderated

    Hi Nates mom,

    Yell all you want, this is the place to do it!  Listen to Trey, he gives good counsel.  Get a CML specialist,  people will recommend someone in your area to go to. This does not mean that you lose the general onc that you have unless you want to.  I have a specialist at the Mayo clinic who has been the head of their transplant team, and a leader in CML.  He works in tandem with my general onc in my town.  A specialist should call the shots for Nate on this one.  No doubt,  you guys are just getting to many mixed messages by the sound of it.  If I misinterpreted anything, I apologize.  Get copies of all of Nates back tests, and get copies of his new tests at the time they are taken.  Educate yourself on the numbers.  I stick around the 20 minutes to receive mine in hand after blood work and EKGs. .  Then refer to Trey's Blog or throw them up here, to validate what you are told.  If they tell you to let them handle it and suggest that you don't continue to educate yourself, get a new general oncologist!  These TKI drugs work.  This is the cancer that seems the most likely to cure,  and the TKIs are always improving.  I am back playing hockey after being dx in August.  My general onc wanted to fiddle with my drug dose almost immediately, and then when i was neutapenic, my hired gun settled everyone down, and called for continuance.  These guys deal with this everyday, all day, and only this.  Sorry if my comments are out of line, this is all an education that never ends, you have to be your own advocate.  Ok, I will shut up and go back to listening, the others are much more eloquent than I.  Hi to Nate,  Jack

  • Re: NATE'S AND MY JOURNEY
    natesmama Registered Users
    Currently Being Moderated

    JUST THOUGHT I'D UPDATE YOU ALL ON NATE'S JOURNEY. I THINK HE HAS BEEN OFF GLEEVEC COMPLETELY FOR ABOUT 8 WEEKS OR SO. HIS PLATELETS HAVE REBOUNDED A BIT THEY ARE IN THE 30,000 RANGE AND HIS WBC ROSE SLOWLY BUT STEADILY AT FIRST BUT HAS NOW BEGUN TO GO UP BY 10,000 PER WEEK. I WAS IN MIAMI WITH HIM FOR A COUPLE OF WEEKS RECENTLY. HIS DR SENT HIM TO A TRANSPLANT TEAM AT SYLVESTER CANCER CENTER TO BEGIN, AGAIN THE FIRST STEPS FOR A BMT. THEY HAVE FOUND SOME GOOD PRELIMINARY MATCHES WHICH THEY ARE FOLLOWING UP ON. NATHAN IS UNCERTAIN NOW, IF HE WANTS TO GO THAT ROUTE. THE DR OVERSEEING HIS CASE AT SYLVESTOR AND HIS REGULAR ONC HAVE BEEN IN CLOSE TOUCH AND TODAY THEY DECIDED TO TRY HIM ON TASIGNA. I AM HOPING THIS WILL PROVE TO BE JUST WHAT HE NEEDS TO EVEN HIM OUT AND MAKE HIM BETTER.  

        JUST READ BACK THROUGH SOME OF MY POSTS AND REPLYS THAT WERE SENT TO ME. I APOLOGIZE FOR HOW I CAME ACROSS IN SOME OF MY MESSAGES, AND I SO DEEPLY APPRECIATE ALL OF THE CARING CONCERN AND INFORMATION YOU HAVE GIVEN ME. THANK YOU ALL FOR BEING HERE!!!

                                                                                                                                                                                     SINCERELY, PAT

    • Re: NATE'S AND MY JOURNEY
      Trey Registered Users
      Currently Being Moderated

      What was the "third chromosome" issue you described earlier?

      • Re: NATE'S AND MY JOURNEY
        natesmama Registered Users
        Currently Being Moderated

        HEY TREY,

          SORRY IT HAS TAKEN ME SO LONG TO GET THE ANSWER TO THIS QUESTION. NATHAN SAID THE CHROMOSOME IS CALLED TRANSIENT TRISOMY 8 ABNORMALITY. I GUESS THE LAST UPDATE I WROTE WAS THAT NATHAN WAS GOING ON TRISIGNA. HE IS ON A VERY MINIMAL DOSE. IT TOOK HIS WBC BACK TO NORMAL LEVELS IN ONE WEEK BUT ALSO DROPPED HIS PLATELET COUNT. HE HAD HIS FIRST CONSULT WITH THE TRANSPLANT TEAM SINCE THEY FOUND A MATCH. HE TOLD THEM HE HADN'T DECIDED IF HE EVEN WANTED A TRANSPLANT SO THEY ARE PUTTING IT ON HOLD FOR 6 MONTHS. THE DR TALKED ABOUT SOME TYPE OF PROTOCOL WITH THE MEDS THAT IS VERY EXACTING...NOT SURE WHAT, BUT BASICALLY HE TOLD NATHAN HE HAS 1-3 YRS TO LIVE WITHOUT A TRANSPLANT AND THE LONGER HE WAITS FOR A TRANSPLANT THE LESS LIKELY IT WILL WORK. PRETTY TOUGH NEWS. NOT SURE WHAT HE'S GONNA DO BUT I'M PRETTY CONCERNED.

                                                                                                                                                                                                  PAT

        • Re: NATE'S AND MY JOURNEY
          Happycat Registered Users
          Currently Being Moderated

          Pat,

           

          All my best to you ans Nate. That is hard news to hear indeed. Since Nate has reservations, I hope he will seek a second opinion from a CML expert.  Not sure if he's seeing one already. Anyway, a second opinion can't hurt, and I'm sure there are many here who can point you to a good one.

           

          Traci

        • Re: NATE'S AND MY JOURNEY
          Trey Registered Users
          Currently Being Moderated

          Trisomy 8 is not so unusual for CML patients taking TKI drugs.  So it is not necessarily a bad indicator as long as it is in the non-leukemic cells.  Some believe the TKI drugs may even cause it.  Often it will go away over time. 

           

          What does his FISH and/or PCR show? 

    • Re: NATE'S AND MY JOURNEY
      GerryL Registered Users
      Currently Being Moderated

      Hi Pat,

      In Nathan's case It doesn't hurt to be prepared for a BMT but hopefully Tasigna will prove to be Nathan's friend. My doc is keen on Tasigna and is swapping his patients (who have had side effect issues with Gleevec) over to it. Great that you got to spend some time with Nathan as well.

More Like This

  • Retrieving data ...

Legend