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Chemo not working
Deb1958
3 Posts

My husband has Mantle cell non Hodgkin’s Lymphoma. He had his first treatment on Feb 1. They were alternating treatments of R-CHOP and DHAP. He did fine with both ot the treatments. after the DHAP treatment the lymph nodes in his neck swelled again about 2 weeks after but when he had the R-CHOp treatment again they went down. He had a CT scan before hie 4th cycle and when he went for his appt. this past Thursday the Dr told him the chemo is not working. THey stopped his chemo right away and are replacing his treatment with a pill called Ibrutinib. He has been referred to Juranvinski Cancer Center in Hamilton where they will do a Stem Cell transplant. He was supposed to use his own stem cells and now he will need to use a donor. We are having a hard time getting any info from our Dr. He just always so busy and on to the next patient. It’s so discouraging. Now we are told it could be a month before we hear from Juravinski. Feeling like we are starting over again.

I guess after my rant, my question is.....has anyone been on Ibrutinib and if so, what was your experience with it? Also if you had. a stem cell transplant what was the process you went thru?
3 Replies
ACH2015
2007 Posts
Deb1958

I am going to tag D1955‍ into this thread. She discusses Ibrutinib as a drug her husband began as well. Also tagging lost_soul‍ and LucyK‍ that recently posted about stem cell transplants.

May I suggest using the search feature, and just type in a work or phrase. Any matches will appear and you can read, reply and use that information.

Also, click no Forums, then click on Cancer Types and select Lymphoma - Non Hodgkin. You may find other related information and or post there for more specifics. No right or wrong - just different methods.

Also, to tag someone you want to, type the @sign and immediately begin to type their screen name. A list will appear and just click on the one you want. If it turn blue - it worked.

Hope this helps.

ACH2015
D1955
43 Posts
Deb1958‍ ,
Hi Deb, sorry to hear‍ the troubles you both are having.
my husband has CLL and It transformed to Richter's Transformation and he was hospitalized last April for emergency chemo. He had chemo every 3 weeks until August. It worked for a while and then we noticed his neck swelling again. We are in Kitchener ON and his oncologist contacted the Jarvinski (?) Centre for a consult and his CLL is no longer following a normal path. He had a PET scan done there. Then a CLL specialist called him.We discussed a stem cell transplant but with his age 76 and his extremely low platelets it was way too risky.
Dr J here got him excepted into a government sponsored program if that is the right word to get Nplates to raise his platelets (Cost if not in the program is over $1,000.00 per shot) and then she applied for the Ibrutinib (cost of over $9,000.00 per month)
He is alive today because he gets these two drugs we have no prescription coverage so being in the program it only costs around $10.00 per month.
The Ibrutinib showed results for him in less than 5 days AMAZING.
He has had minor side effects, some spontaneous bruising but that is what the Nplates are for.
I thank God every night for the person that developed this drug.
Everyone is different but feel free to contact me.
Dee
lost_soul
6 Posts
Hello Deb1958

I didn't have that kind of pill that your husband is taking so i cannot relate but i did go through stem cell transplant.. I went to Ottawa to get that done.. collected my own stem cells... after the collection i felt ok.. not too too sure on the process he will be going through.. but your Dr should be there to answer all your questions... I find it odd that Dr do this....

My experience in Stem cell transplant went like this : Collection in Ottawa, Had to go to hospital as a inpatient. started a round of chemo - cant remember the name- but its really strong twice a day for a week. lost my hair of course, all my counts went down. Once it was time for stem cell transplant, was sent in another isolated room. had to stay in there for a month... counts go down.. had blood transfusions a couple times due to it dropping low. had a bad sore throat, but nurses and doctors tried to help ease the pain, make sure he brings stuff to do cause it gets lonely.... i smelled like tomato soup lolll my husband said i smelled like corn haha side effects... other than that didn't really had any complications, but as I stated the best way to go through it is to let your nurse know when something feels wrong or just as simple as a question.. i had lots i even have a video of my stem cells haha its nasty loll

I've added a video 39162970_220345185299331_1013661884433301504_n.mp4i hope you can view it.. gives you an idea...

Wish you all the best
If you have more questions, ask away. Ill be happy to answer as best to my knowledge :)
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