The Leukemia & Lymphoma Society - Fighting Blood Cancers
27 Replies Latest reply: Apr 23, 2012 11:20 AM by Tex RSS

Need some advice to help my 23 yr old son. Never saw this coming

mickey33377 Registered Users
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History: Son dx with ALL in 8/09...did pediatric protocal and relapsed1 month into maintenance.did sct with sibiling donor 8/10...was doing great at 100% donor with great blood counts at 1 year post transplant. All was going great until 1 month ago (9/11) started getting leg and back pain...doctors thought is was unrelated to leukemia..Pain got worse so a MRI was done with CT Scan showing tumors on kidneys and spine. biopsey done and they are ALL leukemia tumors...Just went through Clorfarabin and Rotoxin chemo and waiting for tumors toshrink and to achieve remission..next step advised is DLI..Just need some advise..has anyone had success with DLI with tumors..not sure if 2nd transplant is advisable with different donor and not sure what hosp would be best. we live in south florida and  H. Lee Moffitt was our transplant hosp..we are very confused and want the best for him...we never saw this coming..everything was going great..never heard of ALL tumors.

  • Re: Need some advice to help my 23 yr old son. Never saw this coming
    mickey33377 Registered Users
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    Also, so far inital spinal fluid and bone marrow negative  for All..Is this good or bad?

     

    Message was edited by: mickey33377

    • Re: Need some advice to help my 23 yr old son. Never saw this coming
      felursus Registered Users
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      I certainly would think it was good to have negative results from the BMB and the spinal fluid.  As far as having a DLI, I only know what I've read on this board, but there are others out there who can speak to it.  You could always get a second opinion elsewhere.  Since your son's been treated at Moffitt - which is certainly the place in FL, you could go up to Atlanta if you wished.  Perhaps someone else has some other suggestions.

       

      Karen

  • Re: Need some advice to help my 23 yr old son. Never saw this coming
    Tex Registered Users
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    I don't know enough about ALL and its treatment to have anything to say about the disease itself.  I do believe many folks have done well with DLI for sarcomas.  I hope it works well for your son.

     

    I'm sorry ya'll are having to deal with this.  I do think Moffitt is a great place, though.

     

    Blessings

    • Re: Need some advice to help my 23 yr old son. Never saw this coming
      mickey33377 Registered Users
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      My son was released from the hosp today..It's so great to be home..the good news is that he is still 100% donor..still don't understand how marrow can be clean and tumors formed..Doctor said he wil be aggressive with treatment...ct scan in 8 days to see if tumors have gotten smaller..than on to DLI..

      • Re: Need some advice to help my 23 yr old son. Never saw this coming
        Tex Registered Users
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        It's something about leukemic cells pooling together, if I remember what my doc tole me when I asked about sarcoma once a long time ago.  It really doesn't make sense to me, either, but there are aspects of the disease I just never felt like pursuing.

         

        I'm glad he got sprung from the joint.  I hope he's able to enjoy it before whatever is scheduled to happen next happens.

         

        Blessings

        • Re: Need some advice to help my 23 yr old son. Never saw this coming
          mickey33377 Registered Users
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          We got the results of yesterday's CT scan..Tumors were reduced by 58%..My son goes back into the hospital tomorrow for another round of chemo..The doctor is trying to reduce them as much as possible before going on to DLI..Has anyone else out there had ALL tumors after having a SCT?  Thanks Tex, we did try to enjoy our time out of the hospital but it's hard not to think about the next step...trying to take one day at a time. Cathy

          • Re: Need some advice to help my 23 yr old son. Never saw this coming
            Tex Registered Users
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            Cathy.

             

            The news about the tumor shrinkage is excellent news, I figure.  Hope that continues.

             

            Yeah, I think the only way to do this is to put one foot in front of the other and try not to stumble.

             

            Blessings

            • Re: Need some advice to help my 23 yr old son. Never saw this coming
              mickey33377 Registered Users
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              1. My son had his 2nd round of chemo almost 1 month ago and Ct scan scheduled for Monday 12/12 and doctor appt 12/14 for results..he feels great and doesn't have any pain...he has gained weight and looks better  than he has in two years...problem is I'm a nervous wreck...it's so hard waiting to see the outcome of these tumors...I can only hope that they are gone and then on to DLI for T Cells from my daughter ... I appreciate any advice from all of you...It's so nice to see my 23 year son enjoying himself but as a mother, I am scared...I've been scared for 2 1/2 years..does it ever get better?..also, he is off immune suppressants now and no real sigh of GVH
              • Re: Need some advice to help my 23 yr old son. Never saw this coming
                Tex Registered Users
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                It gets batter for patients, spouses, children, friends and everyone else.  I don't know if mothers ever get over it.  Well, some do.  My mom was never worried so far as I could tell.  But she might've been doing the hole brave front thing...she could do that pretty well.

                 

                So, help.  Breathe.  Seriously.  Deep breaths help calm us.  Realizing there's nothing I can do until I get the news is something else that helps.  Mostly. I just force a calm on myself and remind myself of that then try to think about other things.  It's kind of like temporary denial but it works for me.

                 

                I hope all is fantastic.  Please let us know.

                 

                Blessings

                • Re: Need some advice to help my 23 yr old son. Never saw this coming
                  mickey33377 Registered Users
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                  Unfortunately we got the news today that the tumors did not reduce with the 2nd round of chemo..Our oncologist referred us to MD Anderson for clinical trials hopefully for the drug Blinatumomab...just got home and made all the phone calls (insurance co., MD Anderson, flights etc)  Never been so scared in my life and I can't imagine how my son feels.  It's been a horrible day.

                  • Re: Need some advice to help my 23 yr old son. Never saw this coming
                    felursus Registered Users
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                    So sorry the tumors didn't go away altogether.  Please correct me if I'm wrong, but I understood that they were reduced 58% from the first round of chemo.  Did they shrink any more from Round 2?  If so - or if they stayed the same, then your son may need another drug.  Sometimes the tumors become resistant to one particular drug.  I think going to MDA is a great idea.  I'm sure the MDs there will have treatment suggestions. 

                    Hugs,

                     

                    I can only imagine how hard it is to be the parent of someone with this disease.  I don't always cope so well myself - and I'm the patient.  My husband doesn't cope well at all - he's got his head in the sand - but since he's not my parent it's not the same thing at all.

                    Hugs,

                    Karen

                  • Re: Need some advice to help my 23 yr old son. Never saw this coming
                    warrior Registered Users
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                    I am so sorry that the second round of chemo did not further  shrink your son's tumors. Cancer and leukemia are pernicious vile diseases. MD Anderson specializes in cancers and has been known to successfully treat difficult cases. I am not familiar with ALL and the cutting edge drugs that have been developed to treat it, I am certain they will pull out all the stops to help get your son into remission. It is so very difficult to watch your loved one battle this disease. Please keep your feet firmly planted in the world of hope.

                    • Re: Need some advice to help my 23 yr old son. Never saw this coming
                      mickey33377 Registered Users
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                      Thank you everyone for you your encouragement...it helps a lot...my son is having pain since the tumor is resting on a sciatic nerve..I would like to get things moving as quickly as possible with my insurance co...we only have in network coverage in Florida but they tell me that it may be approved to go to MD Anderson if that is our last hope for treatment...It will be a long day of letter writing tomorrow...any advice would be appreciated.

                      • Re: Need some advice to help my 23 yr old son. Never saw this coming
                        felursus Registered Users
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                        So sorry to hear your son is having pain - and as a PT I know how bad sciatic pain can be.

                         

                        Re: getting your insurance to pay for MDA - see if the doctors your son has been seeing will write to them saying that MDA (or similar - but that one's the closest) is your son's last hope for treatment.  They might also want to push the point that time is of the essence, and the insurance company shouldn't get the idea that they can make your son go and see other "in network" MDs elsewhere in FL first.  They should make that point whether they really believe that or not or else the insurance co could give you the run-around.  I'm in a bind with insurance as well - mine won't pay for me to even have a consult at Sloan Kettering (it costs $700 plus labwork) - and I used to work there.

                         

                        Good luck with the insurance company - and let us know what's happening.

                        Hugs,

                        Karen

                      • Re: Need some advice to help my 23 yr old son. Never saw this coming
                        Tex Registered Users
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                        Wish I had some advice.  Please let us know how things are going for ya'll.

                         

                        Blessings

                        • Re: Need some advice to help my 23 yr old son. Never saw this coming
                          mickey33377 Registered Users
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                          Tex, thanks for asking about my son...As it turned out he did not qualify for the clinical trial at MD Anderson..The trial is for relapsed ALL in the bone marrow...my son's bone marrow is still clean and blood counts are still excellent...just these stupid leukemia tumors on his kidneys.  Anyway, we got a second opinion from a pediatric oncologist and he suggested a pediatric chemo protocol. he was admitted into our regular hospital here in south Florida and they began the pediatric chemo protocol today hoping to reduced tumor growth and then hopefully on to DLI....it was extremely stressful trying to find a clinical trial and get approval from the insurance company..I felt like our doctor put us on a "wide goose chase" when he suggested MDA without really investigating the trial....and forget about trying to get info on the phone regarding clinical trials...every hospital wants you to go there and get all test done and then meet with the doctor for evaluation before deciding if you are even eligible for a clinical trial... In the "real world" you just can't move your family to another state to get evaluated just on a possible whim..I am happy he is getting treatment started...it was so scary to investigate all these possibilities while there is active leukemia growing..  

                          • Re: Need some advice to help my 23 yr old son. Never saw this coming
                            Tex Registered Users
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                            I can't believe they refused to give you simple information about requirements for qualifying.  That's excessive.

                             

                            But it sounds like that's behind you and you're on a new course and, hopefully, it's the right one.  As long as they get those little buggers on his kidneys, that's what matters most of all.  I hope you followed Kelly's thread about his new journey.  He had some sarcoma and they were planning on a DLI.  Then he got to Seattle and was told he was doing so well they were scrubbing the DLI to see if he had enough going right already to kill off the residual disease.  We're all hoping that's all that will be required.

                             

                            Please keep us informed.

                             

                            Blessings

                            • Re: Need some advice to help my 23 yr old son. Never saw this coming
                              mickey33377 Registered Users
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                              Can't believe how much time has gone by..my son did the pediatric protocol and it was very rough..spent 17 days in hosp and blood counts have just started to recover...chemo included high dose dex steroids daily for 2 weeks and vincristine once a week for 4 weeks..he fell a few times due to muscle deterioration. he also needed many platelet tranfusions...but I am happy to say that he feels good now and tumors were reduced again by 30 - 50 % ...he was admited into hosp last night to begin another round of a different pediatic relapse protocol..TG there aren't any steroids or vincristine in this round..I am so proud of my son...it's amazing how he handles all these setbacks...he really is my hero..Cathy

                              • Re: Need some advice to help my 23 yr old son. Never saw this coming
                                Tex Registered Users
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                                Congratulations on the good news and progress.  I hope they've gotten him into some physical therapy.  If not, I'd want to know why not was I in your shoes.

                                 

                                Please keep us updated.

                                 

                                Blessings

                                • Re: Need some advice to help my 23 yr old son. Never saw this coming
                                  mickey33377 Registered Users
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                                  sorry I haven't updated in a while but its been very hectic..My son had another very intense round of chemo 5 weeks ago and is still trying to recover..His counts are still very low and has been hospitalized on and off due to fevers..CT scan shows tumors were reduced again but now leukemia is back in bone marrow..Unfortunately chemo is not working..we are going to MD Anderson on Tuesday for an evaluation to get into a clinical trial for a new antibody drug called Blinatumomab..hopefully this drug will get him in remission and then he will need a 2nd stem cell transplant.. we are still on this roller coaster ride called leukemia..

                                  • Re: Need some advice to help my 23 yr old son. Never saw this coming
                                    Tex Registered Users
                                    Currently Being Moderated

                                    I'm so sorry the beast is back.  Please let us know how he's faring.

                                     

                                    Just remember that second transplants do work.

                                     

                                    Blessings

                                    • Re: Need some advice to help my 23 yr old son. Never saw this coming
                                      mickey33377 Registered Users
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                                      Well we arrived at MD Anderson on Tuesday  (plane ride was uneventful, Thank God) and had evaluation and testing for the clinical trial..The day was too much for my son and he got a fever during the initial testing and ended up in the ER and was admitted Tuesday evening.  Rest of testing was done inpatient and I am happy to say he was accepted into the clinical trial and today is the 3rd day of treatment.  Whew, what a relief. Blinatumomab is antibody that runs 24 hrs a day for 28 days then 2 weeks off and re-evaluate for additional rounds. First 9 days are spent in hosp and then rest can be done outpatient.  It is a German drug and now first time in US at MD Anderson..The Antibody is suppose to attach to the T Cells and attack leukemia cells. My son is only the 9th person on the trial...So far so good ...no fever in 48 hrs and heart rate is finally normal..I just hope and pray that this puts him in remission.  Cathy

                                      • Re: Need some advice to help my 23 yr old son. Never saw this coming
                                        KyGuy Registered Users
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                                        I'm glad he got accepted into the trial.  Keep us posted.

                                         

                                        Take care,

                                        Kelly

                                      • Re: Need some advice to help my 23 yr old son. Never saw this coming
                                        Tex Registered Users
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                                        Great that he's been accepted for the trial.  I just hope it does what it's supposed to.

                                         

                                        Please keep us informed.

                                         

                                        Blessings

                                        • Re: Need some advice to help my 23 yr old son. Never saw this coming
                                          mickey33377 Registered Users
                                          Currently Being Moderated

                                          Well, it's been  a long road..Unfortuately my son passed on April 13, 2012...We started the Blinatubomab on March 10..his liver and stomach got very inflammed and enlarged and trouble breathing and billirubin got very very high..he was on the clinical for 18 days and had to stop...waited two more weeks and restarted...the same problems happened.couldn't breath..couldn't walk..needed platelets daily and got a fungal infection..waited 5 days and my very smart son said he had enough and stopped treatment on april 10...doctors wanted him to continue but after 2 1/2 long years he knew he wasn't getting better and wanted to go on his own terms...transferred from MD Anderson on 4/12 to a Houston Hospice and he died 1 day later... He was on a couch..no more IV...no more vitals...just him and us..very sad but exactly what he wanted..I wish the best for everyone out there..I hope you all make it for Vincent's sake..he tried very hard but leukemia won..I also tried to reach out to Jamilyn and Maria while at MD Anderson but they were going thru very hard times. I miss my son very much and I feel like it gets harder every day...I'm waiting to feel better from this leukemia nightmare..Cathy

                                          • Re: Need some advice to help my 23 yr old son. Never saw this coming
                                            tranier Registered Users
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                                            Cathy,

                                             

                                            My heart breaks for you..I'm so very sorry!. My son is 21 and he is just 6 mos post transplant...Please know mom to mom that I am praying for you...Your son truly was a HERO!

                                          • Re: Need some advice to help my 23 yr old son. Never saw this coming
                                            Tex Registered Users
                                            Currently Being Moderated

                                            I agree Vincent was a hero.  Some trials it seems are more like a patient selflessly throwing him/herself on a grenade to protect others.  I'm so very sorry it worked out that way for him and ya'll, though.  I hope they're able to fine tune the protocol and find a way to help others.  But, even if it doesn't, he was a brave man for his willingness to test it.

                                             

                                            I am sorry to learn of his death.  I hate every loss these diseases cause.  I do respect that he was able to have a vision of what he wanted to do and how he wanted to do it.  I know I don't want to go hooked up but don't know if I'd have the courage to say it and do it.

                                             

                                            If we can help support you in any way or if you just want to "talk," we'll be here.

                                             

                                            Blessings

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