The Leukemia & Lymphoma Society Community: Message List - cancel my last post its a relapse.....

Re: cancel my last post its a relapse.....

communityreply@lls.org — Wed, 30 Nov 2011 21:14:29 GMT

Nana,

No advice on Jakob's specfic plan, as Leann's relapse protocol is three reinduction blocks before transplant. Block one is 28 days long with vcr, pred, doxo, IT triples, and since her plan is modified, she also gets Velcade. Block two is inpatient high dose Ara-C and block three is five days of VP-16 and Cytoxan. Hugs.

-Karen

Re: cancel my last post its a relapse.....

communityreply@lls.org — Wed, 30 Nov 2011 20:27:34 GMT

Nana -- so very sorry to hear this. We certainly hope that transplant goes smoothly. Good luck to Jakob. You're in our hearts.

Doug

Re: cancel my last post its a relapse.....

communityreply@lls.org — Wed, 30 Nov 2011 18:02:34 GMT

Hi Nana,

My son just did the same 5 day treatment, and I will not lie, the Chlofarbine kicked his little booty. We found the relapse (10% Leuk cells 5 days before checking in for transplant). The 1st night was the worst, Daniel had a fever all night and it went up to 106.8 and heart rate went up to 191 at one point, they were able to get it under control but I was a wreck watching. Over the next few days Daniel had bad nausea and retching, he developed a full body chemo 'sunburn' (they called it a rash). The sunburn itched like crazy, he was on benadryl and atavan while I slathered him with aquaphor and that brought him some relief. He lost all of his appetite and is still on TPN and Lipids. We are 3 weeks out from the chemos and still waiting for his counts to rise. Onc came in yesterday and said maybe next week we would do the BMA to see if the Leuk cells were knocked down and then we go straight to transplant. Also, these last few days he has had severely swollen gums and few mouth sores so get them to stay on top of that. D is also still getting a fever each day, he will be fever free all day and around 8 each night his fever goes up to around 38.8 then slowly goes down, we have had every test and scan run and they can't find a cause for the fevers. D is still cranky and doesn't have much energy but does play in his bed. This will be a hard round for Jackob, and you, but it is doable. Please feel free to message me with any questions. I don't have good wi-fi here at hospital so it may take a while to respond. I've been thinking about you and Jackob these past few days and I'm sending you a big hug.

Re: cancel my last post its a relapse.....

communityreply@lls.org — Wed, 30 Nov 2011 17:32:34 GMT

Nana, I hope Jeri reads this and chimes in, as Daniel just went though the same 5 days of treatment. It really wiped him out, but he is doing great now.

I will be hoping that Jakob's CNS is clear.

Thinking of you a lot,

Bridget

Re: cancel my last post its a relapse.....

communityreply@lls.org — Wed, 30 Nov 2011 15:34:33 GMT

So very sorry

Re: cancel my last post its a relapse.....

communityreply@lls.org — Wed, 30 Nov 2011 14:37:14 GMT

Nana,

I am so sorry for this bad news..I will be saying prayers

Sue

Re: cancel my last post its a relapse.....

communityreply@lls.org — Wed, 30 Nov 2011 02:36:26 GMT

Hi NAna,

I am devastated to read this. The relapse protocol is tough, but having been off treatment for a year does give Jakob a bit of an edge, his body has had time to heal. Transplant was a terrifying word for us, but Maddie is now 4.5 months post transplant and doing quite well. In fact, we saw her primary BMT dr. tonite at a hospital function and she is giving a lecture tomorrow that features Maddie. We too followed the same relapse protocol as Leanne and had a matched unrelated donor transplant on 7/20/2011. There is a wealth of information on the ACOR relapsed ALL site, although, in the beginning of the relapse protocol, I read nothing, was too scared. Then, when Maddie was being admitted to the BMT unit, right before we walked through the double doors to the isolation rooms, a patient had a sign on her door that said " Transplant day +101" it was the best thing I'd seen...it gave us confirmation that lots of kids do well with transplants. We saw that patient tonite, she has started her college classes and is working part time. I know you are terrified, angry, disbelieving, and shocked, but Jakob CAN do this. If you want to talk, email me.

Blessings,

Robyn

Re: cancel my last post its a relapse.....

communityreply@lls.org — Wed, 30 Nov 2011 13:38:36 GMT

Nana,

I have absolutely nothing to say, except that I am sorry and so bl***dy angry to hear this. I am shocked. I understand that typically the first year of OT has the highest chances of relapse; however one does not expect this specially once you've gone through the treatment. I am glad to hear that you've been able to keep some amount of sanity while making some tough decisions and proceed ahead. Do remain strong and, always remember, you and your family will overcome and beat this dastardly disease and we are all here with you as you go through this rather tough journey.

God Bless and my prayers are with you...

Puneet

Re: cancel my last post its a relapse.....

communityreply@lls.org — Wed, 30 Nov 2011 12:40:19 GMT

Nana,

I am so sorry! I don't have any advice on his new treatment plan. I'm sure others will know. I will hope and pray for you guys. Big hugs.

Carrie

Re: cancel my last post its a relapse.....

communityreply@lls.org — Wed, 30 Nov 2011 08:38:12 GMT

Forgive me if this doesn't make alot of sense--

We have a plan for starting treatment tomorrow. It is still waiting for some final test results to finalize. We are not going on study. We are doing 5days of Clofarabine,Etopisode,Cyclophosphamide. Jakob has had VP16 and cyclo before but clofarabine is new. Any of your experience to share? Depending on LP results from today---we will put more or less LP's throughout the month

I would really like to say Thanks for all the messages of support.