After Rixtuximab and Bendamustine - what next???

[pollyg2016]

Hello everyone, I hope you are all staying safe, physically and mentally.

My partner, Phil finished his 6 courses of Rituximab and Bendamustine, about 3 weeks ago. He has had a scan and we will be seeing the Consultant this Friday 26th June. He is experiencing some stomach pain and a high volume of flatulence. He is also getting tingling sensations in his right hand, although that could be due to a device he had fitted under his skin in his shoulder so that they could administer the drugs. He had no veins to speak off in his arms, so this device had to be fitted. I just wanted to know if anyone can tell me how long was it before you felt OK again? Was your recovery a slower process? Did you experience any other problems after you finished on the drugs? When he was on Ibrutinib, he was feeling so much better straight away, but this next treatment seems to be taking it's toll on him. We think the plan is for him to have top-up session every three months for the next three years. I just wondered if the recovery is that much slower on these two drugs than it was on Ibrutinib. His white blood lymphocytes are very low, and I don't know if this will rise to become a bit more stable as he recovers. I would love to hear about your experiences after stopping taking these two drugs. Many thanks. Pauline x

[JeanL54]

Hi, I was on that treatment 9 years ago. Was to do the maintenance for 2 years after but could only do 2 treatments as my blood counts were too low . However, thanks be to God, the 6 treatments of Bendamustine/Rituximab (2 days per treatment) and 2 maintenance Rituximab worked and I am still well.

I started with multiple tumors and the largest was 10 cm (grapefruit size) with many smaller 3 cm ones. When I finished there were just strands left and subsequent ultrasounds shows they have not returned. I do feel great now with lots of energy (most days). I am now 66. Was 57 when diagnosed.

It did take me a long time to start feeling well though. I was very tired and weak for at least a year after. I think if he takes it slow and works at regaining his strength and energy with some light exercise and walking he will feel better sooner. I was slow at starting this....

Good food, exercise and outdoors is all I can suggest and faith that God has this.

I pray blessings on Phil and wish him a speedy recovery.

[pollyg2016 in reply to JeanL54]

Hi JeanL54, Thanks so much for your response. I've just shown Phil your reply and he feels encouraged by your news, he does get very impatient and wants to run before he can walk. Can I just ask...? Have you had any other treatment during the past 9years? No maintenance or check-ups? Just like you, he is very tired and weak and underweight no matter what he eats. He's been busy building us a gym, so now that we're all staying at home for longer, we can start getting fit together. Pauline x

[JeanL54 in reply to pollyg2016]

Hi Pauline,

Glad he is encouraged, because he should be. NHFL is very manageable and I hope he will be feeling well soon. I hope he can get out in the sunshine for a while each day and a good brisk walk (as brisk as he can) would be great. And as I said before, good food. Just remember to take it slow. I thought that I would never feel like myself again, but gradually I improved and now feel better than I did before I was diagnosed. But again it took at least a year for me!!

I have had no other treatments, just checkups with my haematologist every 6 months. She sends me occassionally for an ultrasound to keep an eye on it, but there has been nothing new. I could not do the maintenance treatments, except the first 2, because of low blood counts. I actually ended up in the hospital about 2 months after my last one, quite ill with an infection they never did identify - likely just from the low white blood counts which makes a person even more susceptible, so that is when they cut me off treatments... and that was in May 2012.

I don`t know if you and Phil are believers in God or not, but I do believe, and I believe that that is what helped me get through this.

Good luck with the gym, that should really help. Tell him to not overdo it though. Slow and steady wins the race.

Take care and I will pray for Phil. Keep me informed as to his progress please.

I wish you both all the best for a healthy, happy future.

[pollyg2016 in reply to JeanL54]

Thank you for your prayers JeanL54. Actually, we've just got back from the Consultants and unfortunately, from his scan, it appears that the chemo didn't work. To say he's disappointed is an understatement, he feels six months on these drugs for for them not to work is disheartening. The consultant is having a meeting next week with the team to see the next course then have an appointment next Wednesday to find out what they've decided. I don't know if it's because of the type of cancer Phil has, he has Mantel Cell Lymphomia, The Consultant has said his condition hasn't got worse but it hasn't got better either, it's just stable, and assures us that there is nothing to worry about because there are lots of other drugs might work for him. So, in my eyes his glass is still half full!

[JeanL54 in reply to pollyg2016]

Sorry to hear that. My type was Non Hodgkins Follicular Lymphoma. It is supposedly the incurable kind. Keeping it stable is what they aim for.

There are lots of different treatments out there and I don't know anything about Phil's type of Lymphoma, but there are good doctors who do and thankfully they are coming up with new treatments all the time. It is unfortunate that he went through all that for nothing.

Best wishes for next weeks meeting. I will keep Phil in my prayers. Let us know what his team decides.

All the best.

[JeanL54 in reply to JeanL54]

Where are you located, Canada, USA or ? I'm near Ottawa, Ontario.

[pollyg2016 in reply to JeanL54]

Sadly, there are so many different types of Cancers. Phil's Lymphoma is also incurable and we were told from the start that it's just something he's going to have to live with, changing treatments as and when needed. Myself and Phil has both got connections to Canada, Toronto to be precise. His son lives in Calgary, and Phil (is Liverpudlian) and has Canadian nationality, as well as UK and Bermuda (he's got a thing about collecting passports!!) Myself, I'm from London UK, but I used to live in Toronto with my ex-Canadian husband. We now live in South West France, which is beautiful and they have the best treatment healthwise, so I know he's in safe hands. I'm more spiritual than religious but still appreciate any prayers you can spare! Many thanks

[JeanL54 in reply to pollyg2016]

🙂🌻

[pollyg2016 in reply to JeanL54]

Hi JeanL54, just wanted to keep you updated on Phil's progress. He has a new consultant, a woman who is much nicer and empathetic. She has suggested he do once a month Rituximab and everyday taking the tablet Lenalidomide (Revlimid) - three weeks on, one week off. He starts his new treatment today.

In the meantime a consultant in a new Cancer Hospital in Toulouse want to see him on Wednesday to discuss going on a trial drug. We think this is the CAR-T therapy. I've done a lot of research and it's a very hit and miss therapy. 30-40% success rate for three years, very invasive and the side-effects can cause death. I'm not sure we're ready for that just yet, so will be asking lots of questions and discussing other alternatives. So, in the short term we'll see how he takes to his new treatment, before we decide on anything more drastic like trials.

[JeanL54 in reply to pollyg2016]

Hi Pauline,

I am so happy that he now has a new, more compassionate consultant. Even something that small helps, to feel comfortable enough to ask questions and hopefully trust her to do the best for him.

I have read a little on the CAR-T therapy and had thought it was a really good treatment, obviously I didn`t do enough research. Of course it has been a few years since I read up on it and I don`t think it was/is even available here. Just had a look again this morning and maybe you are right, to try something else first. If it works, though, it could be the last treatment he will need.

I pray the Rituximab and Lenalidomide work for him.

If the trial drug is something else, do not give up on it. Read up and see what you can find. Mine (BR) was a trial back then (2011) and it is the only treatment I had.

Keep us informed and I will keep on praying for a miracle for Phil....

Take care and God bless.