The Leukemia & Lymphoma Society - Fighting Blood Cancers
34 Replies Latest reply: Nov 9, 2012 6:03 PM by VendettaSRB RSS

parents of t-cell All kids.....

ajsmom Registered Users
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How are your kids doing?  How long have they been off treatment or if still in treatment how is everything going?

 

Aj is 15 and has been in treatment for 16 months on LTM for almost 8mos.  Is doing great but still is recovering from drop foot.  He really only had one bad reaction to IT methx. back in consolodation that landed him on a respirator for 2 days.  Other than that he's been great.  He had one platelet transfusions and about 4 blood transfusions the last was in february 2009. He is back to playing the sport he loves,  soccer.  Though he is not 100% due to dropfoot.  He's getting there.  Would love to hear how all the other kiddos are doing.  I don't know many kids at our clinic with t-cell.  Thanks in advance for sharing your experience!

 

Michelle

Aj--t-cell standard risk

AALL0434 standard protocol

  • Re: parents of t-cell All kids.....
    norrim04 Registered Users
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    Joey is high risk t-cell ALL. Presented with 336,000 wbc which peaked at 364,000 in the PICU. Went into remission in a week (!) Had 10 doses of cranial radiation, lost 20 pounds during the consolidation, induction, DI, re-con and re-induction. Joey had more platelets and hemoglobin transfusions then I can remember. Broviac came out and he started LTM last May but his counts were all over the charts 'till November.  He's been on 100% dosing since then. Miraculously (sp?) he was never hospitalized until LTM. He spent 4 days back in Hemonc in June and another 4 in September.

     

    I don't know his protocol but can look it up if you want it. Joey started on Lexapro in Dec. b/c he's been having a lot more emotional issues this year.  I'd say he's back to school at about 80, 85%. He is playing baseball. At the moment, he has a huge lip thing growing. I can see the site becoming about dime size. He's had tons of lip/mouth sores throughout so the writing is pretty much on the wall. I don't want to call the hospital off hours b/c the night folks tend to want to see him right away. We'll talk to his regular team tomorrow and see if they want him to come down. I can pretty much guarantee this is going to get pretty ugly, literally, so I'll probably let him stay home the rest of the week if that's what happens.

     

    Sorry, rambling... the lip thing kind of threw me tonight as well as a case of the road to hell being paved with best intentions regarding a fund raising event that's becoming a case of one up manship for some people involved. I can tell you right now, I have enough drama in my life without getting involved in that even though the original idea was mine. Whatever...

     

    M

  • Re: parents of t-cell All kids.....
    CTMom Registered Users
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    My son was high risk t-cell ALL.  Dx Sept 2005 and OT January 2009.  He was 9 when diagnosed and will turn 14 this week.

     

    He had a rough time for the entire protocol with stomach issues.  MTX kicked his butt.  He was also prone to spinal headaches. He had a very scary anaphylactic reaction to PEG so it was discontinued.  6 hospital admissions.  Blood and platelet transfusions only in the beginning.  He too had cranial radiation.  Counts were stable once he got about 6 months into LTM.

     

    He played soccer during LTM and his struggles were quite noticeable.  Now he seems to be back to "normal" as his feet are recovered from the effects of VCR.  He is on the short side since he didn't grow during treatment and is seeing an Endocrinologist for monitoring.

     

    He was on AALL0232.  It's a difficult protocol, but he is a survivor. There are lots of t-cell families on the board so I'm sure they will chime in soon.  Good luck!

     

    Lisa

  • Re: parents of t-cell All kids.....
    StephanieJ Registered Users
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    My son Scott was diagnosed in January of 07 with t-cell ALL. His wbc at diagnosis was 87,000 - not too high for a t-cell-er I suppose!!  He was put on POG9404 and his day 15 bma showed "good" remission.

     

    Treatment was a nightmare. He had a stroke from the PEG shots and I dont even want to think about that time in our lives let alone discuss it, it was just too traumatic. He had shingles, fungal pneumonia that almost killed him, several relapse scares, repeat dystonic reactions to reglan which were bizarre and horrifying, he ended treatment in a wheelchair, bloated from steroids and 'running' to the toilet every five minutes because the chemo had destroyed his 'good' bacteria. Emotionally it wrecked him too. Just one long crap-fest basically.

     

    He also watched several of his friends die.

     

    Leukemia is a bitch, Im sick to death of hearing how it is the good cancer, how curable it is ... our children go through hell ... year after year.

     

    Anyhow, enough of the ranting. Sorry!!!!

     

    He has been off treatment for one year. He hasnt grown much but he's lost a LOT of the weight he piled on during treatment. He can walk and even run again!!!   His belly has settled down.  He STILL has a touch of the moon-face though, it just wont go.  But he did find his smile again - well its mostly back anyway - he's a teenager and he's gone a bit emo lately. LOL!  

  • Re: parents of t-cell All kids.....
    proudmom Registered Users
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    My daughter was diagnosed with t cell under a year old and had a bone marrow transplant six months later.  Happily she is three years post transplant and is doing very, very well.  When we were given the diagnosis of t cell the prognosis was not good and scary but we're thrilled to be where we are today:)

    • Re: parents of t-cell All kids.....
      Patriksteam Registered Users
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      My son Patrik was dx T-cell intermediate risk on COG AALL 0434 on 11/17/08.  Patriks WBC on dx was 456,000.  His 2 symptoms were a slight loss of appetite, and petechiae and bruising.  He is now in LTM since Aug of 09.  Back in school, sports (basketball and springboard diving), We have had quite a bit of counts dropping, and are finally back at 100% chemo.  Hoping not to crash again.  He has not had any problems in school, or with friends.  We use neurontin  for the foot pain/drop, and have had great success with that. 

       

      http://www.caringbridge.org/visit/patrikrollefson

      Joy mom to Patrik

  • Re: parents of t-cell All kids.....
    TCellDad Registered Users
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    My daughter Sabrina was diagnosed with T-ALL in June 2008 then aged 11. It seemed bad with wbc=360,000 and with the t(8;14) translocation. She had a slow response to Prednisone and was ill in hospital for the first 3 weeks. Now on maintenance she’s doing well, does some sports including skiing, and attends school most of the time. Treatment is still difficult though and we’re looking forward to September when it ends.

  • Re: parents of t-cell All kids.....
    missyfedor Registered Users
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    my daughter Sherene was diagnosed on Jan 19 2010, so we're midway thru the intense treatment phase. Hoping by Sept to start long term maintenance...we're in the hospital right now, she has a fever. Overall she was doing quite well with treatment till the past month, she got neutropenic, then pancreatitis, from the PEG, then broke her arm (got thrown from a horse on a good day) needed surgery to reset the arm, she's now in a cast and now is neutropenic and has a fever and bacteria infection in her blood. THi

  • Re: parents of t-cell All kids.....
    Megan'sMom Registered Users
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    Megan was diagnosed at age 13 with T-cell ALL on Feb. 26, 2009 and is now five months into LTM.  She presented with swollen lymph glands in her neck along with severe fatigue.  Her WBC was only 13,000 at diagnosis and to the surprize of our oncologist (her Day 29 bone marrow biopsy had not shown any blast cells by visual inspection) she had a MRD (minimal residual diease)  of 1.2% so that has put her in the High Risk group.  She was randonmized to ARM C of COG study AALL0434 where she had four inpatient high dose methotrexate admissions during interim maintenance. Meg also required  ten blood and two platelet transfusions along with 1200 cGYof prophylactic cranial radiation over the past year.  (total of nine hospitalizations)

     

    She has also had four other hospitalizations for fever and neutropenia with the worse one over New Years (2nd month of LTM).  She had grade IV mucositis and severe neutropenia (lasted almost four weeks) They determined that this hospitalization  was due to high levels of the toxic metabolite from the 6MP.   A blood test confirmed that she has a defiency in the TPMT enzyme that breaks down the toxic 6MP metabolite so it would build up at the 100% dose level and then crash her counts. She is now at 50% 6MP dose and doing better.  They have been increasing the methotrexate slowly.

     

    Megan did ok with the high dose inpatient methotrexate except for the first time.   Our only non-chemo/neutropenia hospitalization came right after consolidation where she was having daily vomiting and nausea (Emend saved her from the horrible ARA-C vomiting as zofran and kytril didn't stop it) .  It was also determined in the hospital that she had C-difficile (lots of diarrhea) and I know she didn't clear the methotrexate as quickly as she did the next three times. She was discharged but then nine days after the initial  IT and high IV dose methotrexate she had a neurotoxic event.  It was very scary.  She presented with a severe headache then slurred speech and intermittant uncontrollable movements of her extremities.  She was hospitalized for a couple of days but thankfully MRI, Head CT and EEG were negative and the symptoms improved and were gone by 48 hours.  It was determined to be neurotoxicity from the methotrexate and probably a combination of dehydration, flagyl and maybe the kytril and zofran.  (lots of meds were given during the hospitalizaiton)  However, thankfully she went through the next three high dose methotrexate hospitalizations without too many side effects or problems.

     

    It has definitely been a rough year that has taken down a very strong, determined, athletic child but this board has been a wonderful source of practical information and just hearing about how other children have done has helped my husband and I greatly.  As I posted recently,  Megan is back to playing softball, going to school most of the time now as she missed the majority of it last year and she is getting stronger and stronger.  Our oncologist was really impressed this last visit with her strength and recovery (at least for now) from her foot drop.  The physical therapy, home exercises and Megan's dedication to working on it has lead to a dramatic improvement in her significant foot drop and muscle weakness from just two months ago. (part of me thinks she's doing the exercises so she can wear her flip-flops!  (HaHa)  I had forbidden them as they caused her to trip but by golly she can wear them again and if you know teenage girls they want to wear flipflops no matter what the temperature outside is! 

    I really think PT has helped and I know it will be an ongoing battle as she has the monthly "mean" Vincristine.  I am still amazed our children can take so much and still have such a will to keep on living .  We have learned not just to keeping waiting  for the storm to pass but to learn to dance in the rain and want a dance it is.

     

    http://caringbridge.org/visit/meganyoder

     

    Megan's Mom

  • Re: parents of t-cell All kids.....
    TomsMom Registered Users
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    Hi.  My son Thomas was diagnosed with high risk T-cell ALL on May 21, 2005.  His WBC count was 366,000 at diagnosis.  He was 11 years old and in 5th grade.  He completed 3 years 5 months of chemo and 9 days of radiation.  He is doing well now.  The few complications are Cardio Myopathy, Cataracts, digestive issues and no Immune system.  He gets IV IgG infusions every 4 weeks.  His web site is www.caringbridge.org/visit/thomasfrasier

  • Re: parents of t-cell All kids.....
    aspeidel Registered Users
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    My son, Aidan, was dx w/Tcell in Dec 2008.(he had just turned 4)..presenting symps were swollen lymph nodes (only) until the day of his biopsy and then he started w/severe tummy pain and vomitting - he was over 300K wbcs on that day with about every lymph gland (including a mass in his chest) on the day of dx...scariest few days of my life. Due to a couple of blast cells found in his CSF on the cytospin (none were found initially) he was listed Medium risk (his high count would have put him there probably too) and he too had to have cranial radiation.

     

    Aidan responded very well to initial treatment w/o any bad effects and was in remission w/in a week or so and showed no blasts at 2wks (i think it was).  I have sort of blocked a lot of those few weeks out...all treatment went well w/the exception of his 3rd (i think it was) PEG shot caused an anapylatic reaction (second scariest moment of my life) which put him in the hospital.  Has had his share of platelet and RBC transfusions as well.  He had several short stays in the hospital after dx due to fevers (mostly unexplained but seemed to always follow ARA-C and started LTM this past summer and has had another short hospital stay due to another fever.  They had to reduce his 6MP dosage (its about 50% i guess) due to his counts dropping too much (one of the reasons we ended up in the hospital w/the fever in Sept.  Since reducing it down his counts have been in the range the doctor wants them and he has been able to start Kindergarten.  I wonder though when/if they'll decide to try it a little bit higher...makes me a tad nervous his not getting a higher dosage.  Not that I want him to be neutropenic but also don't want him to not be getting enough either.

     

    His onc doesn't want him doing any sports yet though said he could do non-contact Karate which we'll probably let him start soon.  He's been doing really well with treatment and we are looking forward to LTM finishing a little under 2 yrs down the road I guess.  Don't know his exact protocol number but its one many are on (or a variation of it).  As far as growth all seems fine...he has a twin sister and he's always been about 1" taller than her and still is.  He's put back all of the weight he lost (went down close to 5lbs at least at one point) during the heavy duty treatment and seems to be growing (height and weight) just fine.  Doesn't get too much of the steroid bloatedness anymore - I notice the puffiness in his cheeks around the last day or so of his prednisone dosage each months and within a couple days it subsides.

     

    All-in-all everything has gone pretty well so far, he's had his ups and downs but has been such a trooper through it all!  It almost seems like last year was a blur - something we don't talk much about and I try to focus on the positive outlook ahead.  Makes it easier I think to handle

  • Re: parents of t-cell All kids.....
    jmason Registered Users
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    Hi there, my daughter, Ava, is 8yrs old and was dx w/ T-Cell Lymphoma on 12/24/10.  She is on 0434 w/ 1800gy cranial radiation for 2wks, 10 doses due to CNS disease(6 cells present at first LP) and bone marrow involvement (8% blast).  She has done extraordinarily well w/ treatment and starts Delayed Intensification tomorrow.  I have really been wishing I had other parents to be in contact with that are dealing w/ the same dx in their children. 

    Her Caringbridge site is: www.caringbridge.org/visit/avamason There is MUCH more info there on her delay in dx, her dx, and her treatment. 

    ~Jen

    Daughter: Ava, age 8   Dx: Stage 4 High Risk T-Cell Lymphoma    COG Protocol: ALL0434 w/ radiation and Erwinia replacing Peg-asparaginase

    Facility:  Arnold Palmer Hospital for Children in Orlando (dx at Shands Childrens in Gainesville, FL)

    • Re: parents of t-cell All kids.....
      Gabbiesmom Registered Users
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      Welcome!  Good job finding this thread, I've not seen it before, it was interesting to read.

       

      My daughter (4)  is a TCell patient as well. She was diagnosed 9/3/10. She has nearly completed her first 4 weeks of LTM. She and I both are excited for an "easy peasy" appointment with "only" vincristine this week. We are right now trying not to think about the "hungry pill" (presidone) that we also have to start. She seems to have adjusted to the nightly 6mp and  feels better the day after MTX day if she can make herself eat. (Friday mornings are rough)

       

      Frontline treatment went OK all things considered for Gabbie. She gained 4lbs during induction, lost 10 during consolidation. During consolidation she also recieved radiation for 8 days, which really kicked her butt. She ended up on portable hydration to keep up with fluids. After a 3 week delay she started  IM which went well....a few sick days and lethargy... She followed the capizzi method.  DI was easier then consolidation even though she had 3 admits for unknown cause fevers. She never felt sick with them.  She had a 2 week delay between the first part and the second part. Not to bad all things considered.  Dexamethosone completely kicked her in the butt....she was completely checked out for the whole week.  All nausea was able to be controlled with the squalamine patch, zofran and benedryll.

       

      Honestly, frontline was like having a horrible flu, for 9 solid months.  BUT, we feel grateful that she didn't end up in hospital more, and didn't develop any additional illness, at least so far. (other then colds and such) and right now, we feel like we are shaking off this horrible "bug" as we finally enter spring around these parts. The timing of entering LTM is something else! Gabbie has returned to her starting weight and generally looks pretty healthy these days.She even has a nice crop of baby soft fuzz coming on her head....which almost looks sorta funny after having none now for 6 months. (or not much, a little grew back in IM)  She does were AFO's and struggles with balance, weakness in her ankles and legs and generally tires quickly.She has PT weekly.  All of that seems doable though.  We bought a stroller for her (our old one died and we had gotten rid of it) and we are ready to roll (literally) this summer. Cancer can take a lot out of any family. We are pretty determined to let it take as little as possible.

  • Re: parents of t-cell All kids.....
    LadyBugsMom Registered Users
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    My daughter was diagnosed in November 2009.  Unlike most kids she took 5 and a half months to go into a remission. At that point she was classified ad high risk.  From there she went into a cord blood transplant and spent months in the hospital.  We just hit her one year mark of transplant and 6 months ago the doctors started following some abnormal cells that we have since learned are her leukemia.  We are in a holding state right now because of no growth currently.  They are afraid because counts that should be recovered by now from translplan aren't and she isn't strong enough to go through chemo currently.  It is hard and we haven't learned yet how to live with this.  She looks great but we know when she doesn't feel right... when she is pale... when something is wrong.  We are scared.

    • Re: parents of t-cell All kids.....
      Gabbiesmom Registered Users
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      oh!  I'm so sorry Sarah, that dose seem very scary!!  Come on good cells GROW!!

    • Re: parents of t-cell All kids.....
      jmason Registered Users
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      It sounds like you have been through a lot, and wondering what you are about to deal with.  I am so sorry for that.  For me, the unknowing, or uncertainty of treatment, prognosis (even diagnosis! T-cell Lymphoma, or is it Leukemia?!) has been the worst.  I will hope and pray that those counts come back.  Please keep in touch.

      • Re: parents of t-cell All kids.....
        harrisms Registered Users
        Currently Being Moderated

        It's so reassuring to find this thread about t-cell All!  Emma was diagnosed on August 19, 2009, with lymph nodes the size of pingpong balls on her neck.  She was 6.  We've been very lucky, all things considered.  She went into remission within a week, and her MRD was 0.  We're on 0434, low risk.  Treatment has been rough on her, but too bad, as I've learned from reading about the really rough time many of your kids have had.  Induction and DI were the hardest, but Consolidation was no picnic.  Emma's been in LTM for 13 months now--only 6 more months to go, and we're counting the days.  LTM is turning out to be harder than I expected.  C-diff and methotrexate toxicity make for a lousy combination that recently landed her in the hospital for ten days--as long as she was in during induction.  And she's had two packed cell transfusions in the past three months, and it's looking like we're headed to another next week.  But she's a tough little one, and so incredibly positive.  She has a calcified clot hanging off the tip of her port line, so we start each day with a shot of lovenox in her thigh.  Because of the blood thinner, her participation in sports has to be limited.  But I think she may start up her dance lessons again this summer.

         

        Emma has the thalassemia trait (Mediterranean anemia--though she's adopted from Vietnam), which created numerous puzzles until they figured that out.

         

        Suzan

        • Re: parents of t-cell All kids.....
          aspeidel Registered Users
          Currently Being Moderated

          Suzan,

           

          Emma's neck nodes sound like how Aidan's started off but one progressively got even bigger.  Aidan and Emma are pretty close in treatment right now.  Home stretch and hoping they all have life long cures!

    • Re: parents of t-cell All kids.....
      harrisms Registered Users
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      I'm thinking of you throughout each day, Sarah, and I'm hoping  you've gotten some positive news. 

       

      Suzan

  • Re: parents of t-cell All kids.....
    Gavinsmom Registered Users
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    We are relatively new in our T-cell battle.  Gavin was diagnosed on March 15, 2011.  Induction was the most horrible 30 days of my life.  We start the last week of Consolidation on Monday and he has actually done pretty well with it.  We are on AALL0434 as well as many of your kids, but I believe a different arm.  We weren't given an option as our hosipital does not participate in the studies.  For our IM phase we will do the HD MTX every other week for 4 weeks along with the IT MTX and Vin.  Gavin is considered Intermediate Risk due to CNS involvement from diagnosis.  It was minimal and the sample had to be sent to 2 other hospitals to determine if the cells were actually blasts or not.  Unfortunately they were.  We have 8 days of radiation in DI, coincidentally the same week our baby is due.  That should make for an interesting week.  The radiation is for me the scariest part, but a mom at our clinic took a bunch of pictures of her son's experiences and shared, which it made it less abstract and a little less frightening.   I guess the place we are going is wonderful with the little ones (Gavin just turned 4) and makes it as easy as possible.   I am looking forward to Maintenance, however some of the posts on here have made we wonder if life will be as close to normal as I am expecting it to be.  I appreciate all the sharing of how your children are doing the good and the not always great.  It makes it so much easier when something does arise to know that others have been there and gotten through it.  However, I wish none of the kids had to go through any of it.

    • Re: parents of t-cell All kids.....
      aspeidel Registered Users
      Currently Being Moderated

      Gavinsmom,

       

      Reading your son's story is similar to reading my Aidan's.  He also had just turned four when dx.  Also intermediate risk due to CNS involvement.  Like Gavin initially they didn't find any blasts in the CSF but then after some cytospins they found a couple.  For me Cranial Radiation was the scariest as well.  I didn't want him to have it.  Was scared he could have lasting effects.  I did a lot of research and some was reassuring and others worried me at first.  Cuz really what parents wasnts to sign their kid up for having radiation directed at their child's brain.  My worry was for naught!  It really was so simple of a procedure and other than increased hair loss (which he'd have had any way but maybe stayed around a bit longer).  He didnt have any increased issues that we saw.  He went through it all in stride.  Didn't have any probs that they say can occur with it.  My biggest worry was if he could have any long term learning disabilities but any kids that this was reported in had much higher amounts of radiation and was when they used these higher amounts a part of the protocol.

       

      The other thing that got me past the overwhelming fear was that by having this, it would increase his chances of NOT relapsing in the spinal cord or brain.

       

      The one part certainly of our stories that isn't the same is I didn't have a little baby on the way during this time.  I pray for you and your strength as that's a lot to have on one's shoulders.  The new life will be a beakon of light in this not so perfect time of a CKs life.  I will pray for Gavin and that he sails smoothly through CR and the rest of his treatment and for that lifelong cure!  LTM may seem a long time from now but looking back the time of intense therapy seems like such a short time.  Its almost as if its been blocked from part of my memory as so much of those 9 mos passed in a blur and the better times since are replacing the harder days of before!

       

      You, Gavin, your baby to be and rest of your family will be in my thoughts and prayers!!!

  • Re: parents of t-cell All kids.....
    Megan'sMom Registered Users
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    I just wanted to update on how Megan (now 15 years old, HR T-cell ALL diagnosed  Feb.26, 2009)  has done this past year in LTM.  My previous post was in April of 2010 with her just finishing month five of LTM.  She is now only one week from finishing all chemo and has already had her last IV Vincrisitne.  The port is coming out Tuesday!

     

    It's been a much better year.  Although, the week of Vincristine/Prednisone has some some effects..headaches, foggy brain (hard to concentrate for school), some neurotoxicity in her legs from the vincristine which has caused a slight foot drop and bilateral  leg pain.  We had her in PT which gave her orthotics and they worked weekly to keep her strength and rebuild her muscles.  It really helped.   Megan was a three sport athlete and was able to play volleyball and softball this year (not as good as she was before but by golly most people didn't know she was undergoing chemotherapy. )  Megan also in May became open water dive certified and we are going diving at the end of the month  (ie why we want the port out).  She did very well in school making all A's (freshman in high school).  So far, there have been no signs of the long term cognitive side effects from the cranial radiation  (1200 GY  given Oct., 2009)  or the high dose methotrexate (given during IM summer 2009).    We now just keep praying that there will be no long term side effects and the "monster" doesn't come back.

     

     

    Although life did not go back to the "normal" it was before diagnosis.  This past year has been so much better.  No hospitalizations and no transfusions.  We still deal with some good days and some bad days but it's mostly that she's tired and doesn't have the stamina. I can't wait for her to be off treatment although I have a nervous "flutter" in my stomach that my "security" blanket of the chemo pills were keeping the leukemia away.  I'm sure a lot of off treatment parents have that same feeling.  I still get nervous when she starts having really good days that something bad will happen and then when she has a a headache or is really fatigue my hear panics that there's something wrong.  My logic brain just has to take over and remind me how thankful I am that my daughter has made it through treatment and now is facing a lifetime of opportunities.  She already has a huge list of the things she is going to be doing this fall.

     

     

     

    Cathy

     

    ALL0434 ARM C

    T-Cell High Risk

  • Re: parents of t-cell All kids.....
    balkan123 Registered Users
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    Cathy thanks for posting...Pl do comeback every 2-3 months and give us all good news... Congrats.......And rest assured T cell does give problems after 2 yrs.....

    • Re: parents of t-cell All kids.....
      nsampey Registered Users
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      Son was just diagnosed on May 17,2011 so this is our second month of treatment.. Thanks for all the post, insight to the road ahead is scary but reassuring as well that there is a lot of positive stories... We are currently in the hospital for an intense phase of chemo, so this is our home for the next 3weeks or so. He is currently fighting pain from a blood clot in his brain that was recently discovered after an E.R. visit a week ago. This was a rare side affect from one of the chemo drugs administered by double shot in the leg on day 4... I still feel like I am in a bad dream that someone should be waking me up from..I have maintained a positive spirit and attitude around him, but when I am alone with quiet time I feel so lost and helpless...Please keep me and my family in your thoughts and prayers...

  • Re: parents of t-cell All kids.....
    Fontenrose Registered Users
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    bump

  • Re: parents of t-cell All kids.....
    BBmom Registered Users
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    My son Matthew (9 yr old) was diagnosed June 9, 2011. Has HR T-Cell  ALL  and Following protocol ALL0434. He is almost done with 8 days of XRT and should  be starting LTM sometime in March. It's great to read your encouraging stories. We know we have a long road ahead and I'm so glad to have found this board. There's really nobody else that understands the pain of a cancer parent.

     

    www.caringbridge.org/visit/Matthewtoman

  • Re: parents of t-cell All kids.....
    ajsmom Registered Users
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    This is just an update for Aj.  Wow,  seems like so long ago when I first posted the original message.  Aj has been doing great, which sometimes worries me, as wierd as that may sound.  I know all the kids are so different but it's like his meds for LTM don't even phase him.  An occasional tired day after prednisone and clinic day but that's it.  He will be OT at the end of this month and getting his last vincristine on the 13th, port out the 16th.  We are so excited but I am scared at the same time too.  Aj is going to West Chester University in the fall, his first choice and will be joining his big sister who is already a freshman there this year.  I am so excited to have her there and keep an "watchful" eye on him, lol.  I am hoping life just moves on but I am also sad that these last four years have been memories of his cancer battle.  He was diagnosed as a freshman in December 08, and now a senior.  But,  he is here, and he got to play on his high school soccer team winning the county title, district semi-finalist and state-runner up with his team.  He was even a starter this year, so he did not let cancer beat him.  There is light at the end of the tunnel for all you newbies,  I remember my first post on here and thinking this month, this year would never get here.  I am so blessed and don't know what I would've done without having this board,having you all as support.  No one gets it but you guys!

  • Re: parents of t-cell All kids.....
    BBmom Registered Users
    Currently Being Moderated

    Aj's mom,

     

    Thank you for reporting back to us! That is soo encouraging. We are waiting for counts to go up to start Maintenance. My son will end treatment in November 2014. It's been a rough journey for us, mostly emotional since his side effects have been minimal, and like AJ my son has only had about 4 transfusions. It's always a relief to hear stories like yours.  Many more blessings to your family!

  • Re: parents of t-cell All kids.....
    Shasha Registered Users
    Currently Being Moderated

    Hello all..this is Shasha's mom.My daughter was diagnosed with T cell ALL on April 18th 2012...she is on COG0434 too....she is in remission from Day-8 and her Oncologist decided against doing  any MRD since she was 13  years olds they decided go ahead with maximum dosage for T cell ALL due to her age.her WBC was 22000 at Dx and she had a huge mediastinal  mass  ...I am so thankful to God and  to so many people known and unknown who were praying for our daughter's speedy  recovery....this reminds us  all how  much human we are and there is one God inside  each one of us too. I  would like to thank all of you  here in this forum too   for taking time and  posting  your experiences and answering questions  in the middle of all  that is happening around  us during the course of treatment .This really helps folks who are new this and people who are already well in to the treatment cycles.I can keep on writing so much and Our treatment is one big roller coaster already and Shasha has gone thro so much I am planning to share it in a seperate blog .We did learn a lot during this experience and hope to share it with all of you.Now my kid is in the middle of Delayed Intesification phase Day-29....I have  a question here  is  anyone here in this forum has skipped consolidation due to complications and had done Double DI under this protocal...our Oncologist here in chicago  decided to go ahead with two IM's and two DI's for my daughter..has anyone heard anything like this before?any experience with Double DI's anybody?we really appreciate any answers regarding this as we are worried about skipping the consolidation altogether....we are planning to get a second opinion regarding this too...Please suggest any hospitals around chicago..we are planning to get it from Rober H laurie childrens  here.

    • Re: parents of t-cell All kids.....
      sweetpeas_mom Registered Users
      Currently Being Moderated

      Hi Sasha,

       

      My daughter was on 0434, finishing it's LTM about a year ago.  She's now soon to be 18, (diagnosed @ age14).   She also had several medistinal masses (they thought her breathing should have been affected when she was diagnosed, but it wasn't in a big way.  Regarding Consolidation & DI, DI was approximately 2 wks of the same Chemo as in Induction, followed by 2 wks of consolidation chemo, short break, then repeat that cycle.  So by shifting to two DI's, I think there would be a two weeks less of the consolidation meds and two weeks more of induction meds.  The 2nd IM would be a little bit more recovery time.  This, I don't think she'd be skipping the medication completely, rather getting a little less and changing the time.  I know one of the B-cell protocol branches have a two DI cycle, but the blend of chemo is a little different there.

       

      Take Care-Cheryl

      • Re: parents of t-cell All kids.....
        Shasha Registered Users
        Currently Being Moderated

        Hi Cheryl,

         

        Nice to hear that your daughter is OT now and hope she is doing well...Thanks for taking time and reply back to us.....our doctor did tell us about the use of more induction medication and less of consolidation medication...her treatment so far was  like this ....

         

        1-she finished her induction (After first  6 days of intubation due to breathing issues)-20 days in hospital-in remission from day 8

         

        2.Did her first IM  for two months due to infection in lungs(caused pnuemothorox) (reason-  above intubation)-took antibiotic-Linelazid(zyvox)-lost lots of weight(doctors do not know why ...we keep telling them she is having Green diarrhea for the whole time of two months-no action taken other than testing the stools  for infection which came out negative)-another 20 days in hospital

         

         

        3.started consdolidation Day-1 given cytox/Ara-c/IT MTX-Hospitalised the very next day with Lactic acidosis/Pancreatitis/chemical shock(Reason-no solid answers may be PEG/may be Ara-c-for Pancreatitis)-Another 20 days in hospital.....

        Decided against giving PEG in the future.

        Put on Maintenance for a month.

        After stopping zyvox the green diahrrea issue resolved and  started gaining weight... did a bone marrow again in middle of  september(because of all the issues and delay in treatment) no blasts   still in remission-Thank god.

         

         

        -some doctors who are our family friends say Linelazid causes Lactic acidosis and  high lipase and amylase levels(which are used to diagnose pancreatitis along with scan results) -but our oncs  are silent about this.I have posted this question in this forum also  about this medication called Linelazid (zyvox) .

         

        Wish the doctors had better knowledge about this drug's (zyvox)side effects  (especially the Infectious Disease doctors ) -they should have monitored her lactic acidosis levels throughout the treatment.

         

         

        4.Last month they have decided to go ahead with two DI's and now we are in the middle of first DI ...... Day-29 of DI  this Monday.

         

        Hope this goes well with God's grace and lots of prayers without much side effects.

        She is having drop foot also due to Vincristin and using  AFO's and PT now and getting better.

         

        Hope this information about Zyvox helps somebody in the future  and they need not go through all the things which our  kid had to go through due to the lack of knowledge.

         

        Take care and Thanks once again.-Paddy(Shasha's mom)

  • Re: parents of t-cell All kids.....
    VendettaSRB Registered Users
    Currently Being Moderated

    Well, I'm not a parent of any sort, but I could be considered a child. A little older at least

     

    I was diagnosed in mid-december 2011 with medium risk T-cell ALL. I'm not even sure how many wbc did I have. It seems it's been so long ago. And I really try not to remind myself.

    Anyway, I'm still on 2 years treatment, so far so good. I go to school, I do sports. I'm feeling quite Ok. Trying to get back some of the kilograms I've lost (pounds if in US).

     

    I'm glad there are so many of kids and teens that survived and doing great. It gives me hope. Thanks.

     

    Best wishes.

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