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9 Replies Latest reply: Jul 14, 2009 8:48 PM by greeney RSS

Never been given a choice before- help!

mom4boys Registered Users
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Eli has been off of Vinc since October.  Okay- back up.  Eli has SR ALL dx 9/11/07.  On 10/17/08 he was diagnosed with Guillain Barre Syndrome.  It is thought that it was caused by a "perfect storm" of IT MTX, virus and the flu shot.  Guillain Barre is an autoimmune neuromuscular syndrome that is defined by the immune system eating the myelin sheathes of the nerves.  Within a week, Eli went from running and swimming at the beach to not being about to even sit.

 

Okay, so here's my dilema.  Since the diagnosis last October, the oncs have been holding the VINC afraid that it would do more damage to a compromised neuromuscular system.  Our Rehab doc seems to not have any info on children with ALL and GBS is a bit clueless (admitted to not knowing VINC and had to do research on the internet- taking the onc's word for it)  and we don't trust his knowledge of our special case.

 

Eli is walking now with braces on his legs.  He still has a strange gait, is unable to run or jump however, his stamina is improving.  Our onc wants to know how we feel about starting up the VINC again on Aug 4th.  She decided to discuss it with our Rehab doc (whom, may I remind you, is clueless).  I don't really trust that the Rehab doctor has any idea if Eli is ready for VINC again.

 

What can I do to be more educated in this decision?  We've really been milling it over.  We've never been given an option on the drugs he takes (as I'm sure you understand).  It has been hard on us from the beginning to go off of the protocol and now it's hard to go back on.  What do you think?  I can't find much info on VINC and neuromuscular compromises.

  • Re: Never been given a choice before- help!
    tburkhardt Registered Users
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    Wow--that's tough...

    I would do all of the research on the net I could do (including the importance of VINC in the protocol), and then maybe give it a shot and look out for/measure side effects while you weigh pros/cons.

     

    Tough decision though---I hate it that there is so much still yet unknown....

    Good luck,

    Tonya

  • Re: Never been given a choice before- help!
    Fontenrose Registered Users
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    Your oncologist should be actively consulting with other oncologists to get some opinions.

     

    Did your son seem to tolerate the vincristine well enough before the GB?

     

    Did they assess the damage to your satisfaction? As far as I understand, they tend not to continue with the vincristine after a certain amount of damage. In this case the damage is due to GB, but maybe it amounts to a similar case.

  • Re: Never been given a choice before- help!
    Shakinquaker Registered Users
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    What Fontenrose said!  There needs to be collaberation.  Do you go to a COG hospital?  Has there never, in the history of the world, been a kid w/ GB and ALL?  No- there probably isn't a great deal of study, but some one has likely done this before.  The Oncologist and Rehab docs need to start some collaberative effort.  If they aren't maybe you can.

     

    I am wondering what exactly VNC does that causes gait disturbance.  I know that it does, and have not needed the exact mechanism.  Does it affect the nerves?  Is is a muscular issue?  What about the mylean sheaths?

     

    This stinks.  Somehow, it is easier when the docs say "do it!"  Then if it isn't the right decision you can blame them 

  • Re: Never been given a choice before- help!
    nana Registered Users
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    I agree with others your docs should be conferring with others to find past studies.There must have been past similar cases!! What a terrible decision to leave up to you without proper information!!!!

    Check medical journals, call other specialist, push your docs for more information- make them do some research.

     

    Good Luck and I am sure you will make the right choice, just the fact you are asking is a step in the right direction.

     

    Nana

  • Re: Never been given a choice before- help!
    Annieo Registered Users
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    I've been researching the side effects of Vinc lately trying to understand its role in autonomic neuropathy.  I remember reading something about the nerve damage from Vinc being similar to the nerve damage from GBS, so I can understand why the onc wanted Eli off of Vinc.

     

    This would be a very difficult decision, but I agree with others that your onc should be consulting with other doctors.  This seems like an awfully weighty decision to leave up to a parent who has limited information.  Are you in touch with my friend whose daughter Abby also had ALL and GBS?  I don't remember them stopping the Vinc, but I wonder if that might have made a difference in her case.

     

    What is a rehab doc?  We work with a physical therapist who scecializes in kids on chemo.  She's currently heading up three different studies dealing with the treatment of Vinc related neuropathy and is having great success.  My son has neuropathy in his legs, one far worse than the other, and she's offered us several options to help him regain range of motion and flexibility.  I think she's probably the same PT who works with Abby.

     

    I wish you the best.  It's hard when there's no information out there about what you're dealing with.  I've been there and ended up getting a second opinion from a doctor halfway across the country.

  • Re: Never been given a choice before- help!
    mom4boys Registered Users
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    Thanks everyone.

     

    Eli seemed to tolerate the VINC fine before the GBS.

     

    Since my onc wants to colaborate with our Rehab doc (as far as we can tell, all a rehab doc does is coordinate the PT care- a contractor of sorts) we have tried to get him seen by another Rehab doctor hoping that they have more experience in GBS and cancer care while on vacation.  I was unable to get him seen (and the receptionist treated me like I was an idiot).  I called a family friend who is a oncologist here specializing in brain cancers hoping that she could give me info and all she told me was to trust my oncologists that the hospital I go to is good (she also treated me like I was stupid).  Why is it so hard?

     

    I guess I should ask her what the COG  says and what the rehab doctor said.  I can ask her what the other oncologists think and go from there.

  • Re: Never been given a choice before- help!
    austinmom Registered Users
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    I have been following Eli on CaringBridge for quite some time.  Wow.  You guys have had more than your share of stuff to deal with.  This is a big decision.  I don't think you're going to get a lot of answers from oncologists in your clinic.  They just don't know.  If they had the research out there, you probably would have already found it.  I would suggest starting with a neurologist.  The more specialists you have looking at this, the better.  You might even try to find a neuromuscular specialist.  My daughter had a lot of unusual problems during therapy and our oncologist (we live in Texas) contacted Dr. James Nachman (COG leader out of Chicago) to ask about deviations of the COG protocol.  My oncologist sent him an email (copying me on it) asking his advice.  He responded with his opinion.  I was really grateful to have this level of input.  I also called oncologists with expertise in certain areas and found many were willing to talk to me about my questions.  It really just depends on the doctor as to whether they want to talk to you or your doctor.  I think the bottom line is you may have to take the initiative to get him seen by a specialist.  I wouldn't necessarily wait for your oncologist to get referrals or to ask questions.

     

    My daughter has been OT since January.  She still doesn't have any deep tendon reflexes (due to Vincristine).  She has a bit of a strange gait, but I am not complaining!  It's great that Eli is walking again with braces.  I've seen kids in wheelchairs at our clinic from vincristine (short-term).  I would be concerned about starting him back on it.  If there isn't some kind of rush to put Eli back on vincristine, you can take some time to really look at this.

     

    Beth

  • Re: Never been given a choice before- help!
    aea309 Registered Users
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    Gosh - it's amazing that at first they take away our authority, and then push it back at us, right??!!!  I also agree with what the others have said - that you have do all the research, calling, and coordinating yourself. Push your oncs to speak to others as well.  And you do have to stay on top of them.   When Aidan was dx with AVN, I actually emailed the head of the COG protocol he was on directly myself - and he responded directly! This was after realizing that the oncologist only cared about the cancer and the orthopedist about his bones.  And it was only me that cared about it all,  and had to deal with the day to day care of the terrible side effects of these drugs.  So I called and spoke to as many people as I could. I posted here. I researched and read.  And I stopped being apologetic for being an absolute pain in the ass.  I have REALLY stopped caring about that!   And you do really need to find a PT person who has experience dealing with cancer kids, because the PT person is really the person who will make things happen for Eli.  The neurologist sounds like a good idea as well.  I was surprised at how many doctors, though,  were willing to talk to me.  And e-mail back.  The really good ones anyway...;)   I would also hold off until I got more information as someone suggested. Glad to hear Eli is walking even with braces, and I think a great physical therapist will take him the rest of the way there.  Keep looking, keep asking...

    Angela

  • Re: Never been given a choice before- help!
    greeney Registered Users
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    This is a most difficult decision to be thrown at you, blindfolded I might add, I agree with the opinions of being firm with your Onc and insisting on more info, as what's been dumped in your lap is not good enough. When our daughter had a major complication during her treatment we had 8 Onc's around her bed all brainstorming on what steps to take, non of them had dealt with this before but there combined knowledge got her through, this is what you need to happen.

    I found your question aroused the curiosity in me and went looking for some info, apparently VINC can mimic the symptoms of GBS which makes it difficult to truely dx. VINC does cause deep tendon reflex damage which is what we are dealing with at the moment with Lyvy, her feet are turned outwards & leaning inwards, she was in a wheel chair for the first few months of treatment, she completely lost her legs at that stage and was very sensitive to chemo, we never got above 50%. During Lyv's treatment she also received an accidental adults dose of VINC, after getting over the shock and asking "O.K what will this do" they replied she will have temporary nerve ending damage in amongst other side effects, for about 4 weeks Lyvy had extreme tingling in her hands and feet, so VINC really does mess up there nerve endings and I question the "Temporary".

    Your Onc really needs to dig deeper, I also read about GBS Dx's during ALL treatment where the patient was treated with immunoglobulin on completion of treatment and the patient eventually returned to near normal, just more food for thought and maybe ask your Onc about this, I know I would want more info before a decision was made either way.

     

    All the best

    Jenn

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