NEW TREATMENT: RITUXIMAB AND BENDAMUSTINE

[pollyg2016]

Hello,

After Ibrutinib stopped working for my partner, he will now be embarking on a new treatment. Rituximab and Bendamustine chemotherapy combination. Has anybody had any experience using these drugs together? Many thanks,

[DebsW]

Hi Pollyg, I was diagnosed with non Hodgkin’s lymphoma in my spine in 2016. Because it had spread extensively down my spine my doctor decided on treating it with 6 months on a combination of bendamustine and rituximab followed by two years of rituximab on its own.

I was one of the unlucky people who experienced a lot of nausea and vomiting despite anti nausea treatment but not everyone gets this. Although my hair thinned a little I didn’t lose it and you wouldn’t know by looking at me that I was having chemo! I think the side effects you get vary a lot from person to person.

After the six months of combination treatment a biopsy showed I was in complete remission, so my outcome was fantastic! I’m still doing well nearly a year after my last rituximab and try to enjoy every day even in the simplest way as having been so ill you realise how precious life is.

I wish you and your partner the best of luck!!

[pollyg2016 in reply to DebsW]

Hi debs, thanks for your feedback. Were there any foods or drinks you were not allowed to have during your treatment? How did you feel after each session? My partner will be having two days of chemo and a break of 21 days, this repeated x6.

[Imaginenocancer in reply to pollyg2016]

Your tastebuds completely change during and after treatment ! Go with what tastes good and also food temperature is a key factor as well💚

[cdckcc]

My husband had great results and almost no side effects from the B&R treatment!

[pollyg2016 in reply to cdckcc]

Very pleased to hear your husband's result with the combinations. How long ago did he have treatment?

[pollyg2016 in reply to cdckcc]

Another question, were there any foods or drink that were not allowed during your husbands treatment?

[cdckcc in reply to pollyg2016]

No, he ate and drank whatever he wanted. No port, no hair loss. he had a little constipation after the first treatment. For 2nd treatment, he took stool softeners the day before. Drink lots of water all the time and electrolytes a few days before and during treatments

[R615-r1122_ in reply to cdckcc]

Absolutely no side effects from B&R treatment

Second year in remission!

[Jean49]

I had that combination the second time I came out of remission and I developed blood clots in my lungs which was treated with a blood thinner. You may want to ask you doctor about using a blood thinner prophylacticly if you may be at risk for clots.

[pollyg2016 in reply to Jean49]

Hi Jean49. Thanks for this information. I will ask the doctor about the blood thinners. What were the signs that you had developed blood clots? was this after the treatment or during? How did they monitor your progress?

[pollyg2016 in reply to pollyg2016]

My partner has developed a thrombosis in his arm and he now has to have injections every day for the next six weeks.

[cdckcc]

Treatment was 2 days a month for 6 months.

[pollyg2016 in reply to cdckcc]

Yes, my partner will be doing the same. I think it's two consecutive days then a break of 21 days. Also, could I ask if your partner experienced any shoulder pain or an enlarged spleen before he started his treatment? Was he on Ibrutinib before?

[cdckcc]

no shoulder pain or enlarged spleen. He started due to high viscosity

[margella]

I had BR in 2013 and have had no reoccurance. I worked through the treatments but did take off two days during and two days post infusion. No hair loss. Nausea two days directly following treatment. Nothing I couldn't handle. No restrictions other than a one and done alcohol policy. Good luck. It worked great for me and here's wishing your partner all the best. Live strong!

[pollyg2016 in reply to margella]

Thanks for your feedback Margella! I'm feeling very positive about all the responses we've had. One other question, do you take any vitamins to strengthen your immune system? Also did your treatment consist of one-day treatment, then a day off then another day treatment? or was it two days consecutively ?

[margella]

It was two days consecutively infusion days and an injection of Neuslasta on the third day. This was considered one monthly cycle. Your doctor may do it differently as they are improving drugs and systems all of the time. I took a prescription anti nausea medication which I highly recommend as I would have been extremely nauseous without it and I took prednisone. Overall, I tolerated the treatment very well. As I said, I continued working which helped keep my mind off things. My job however was an office job. Not sure how I would have handled a physical job. Good luck!

[pollyg2016 in reply to margella]

Thanks so much for coming back to me with your experience. This is all very positive for my very nervous partner! Long may you keep in good health!

[Von40]

Hi my husband has just finished Bendamustine and obinutuzumab and after 2 years of treatments he is in remission.

[pollyg2016]

Hello, has anybody taken CBD oils whilst having treatment? My partner is on Bendamustine and Rituximab. He's had his first session of six and is experiencing lots of night sweats. He has also caught an infection in the arm where the treatment was administered. The doctors have just given him an alcohol solution pad to wear and told him to take paracetamols. Also how many sessions did it take before you began to feel better or at least less sick? I've got a very impatient partner who thinks he should be feeling better after his first chemo dose, even though he's had chemo before and knows what to expect.

[JeanL54]

I had those two drugs in a trial for NH Follicular Lymphoma in 2011. 6 treatments (2 days each) and I am fine now. Praise the Lord. There was to be 2 years maintenance after the treatments were finished but my body wouldn't allow that, so I had to forego the maintenance . Best wishes.

[pollyg2016]

Thank you so much. I have heard this a lot, so every positive comment swells my heart. How do you feel in yourself? Long may you continue in your recovery.

[JeanL54]

I feel great! Better now than I did before diagnosis and treatment. I think the lymphoma was working on me for a long time before diagnosis and treatment. It did take me a long time to get over the treatments but now I am good and happy and feel great. I pray for the best for your partner. Treatments weren't that bad, just a lot of nausea. No vomitting, just felt that way. No hair loss either. Take care and God bless you both.

[JeanL54]

I see you mentioned an enlarged spleen. Mine got enlarged as well while on treatment and I was told that it was because of all the work it had to do to clean all the toxins out of my body.... Chemo is the toxins and it is very hard on everything and I guess the liver and spleen have a lot of work to do while you are on it. I don't know if this is exactly right but I am sure there are lots of people out there that would know that better than me. I just went with what I was told. It is fine and normal sized now.

[Whitley55]

Yes I did for stage 1 non Hodgkin lymphoma. Was given Tylenol benadryl and prednisone before each treatment and neutresta on day 3

[mkawass]

Hi polly , from Morocco

My father was diagnosed with CLL on 2007 at the age of 51. He was on wait and watch till 2011 when he had to start chemo. He used Fludarabine+Rituximab. the usual treatment cycle is 6 months like you know. but when he started the fludarabine on the second day he suffered a heart attack,probably due the tumor lysis syndrome and the doctor forgetting to give him drugs to help with that. Things were tough but he made it through, he had to stop the chemo and surprisingly he was on remission form a half dose of chemo from one session only, he never completed the rest. A miracle.

On February 2019 the cll relapsed. i quit my life in the states and came back to be with the family. This time he used Bendamustine and Rituximab and a new amazing doctor who turned out to be a daughter of an old friend of his that he didn't see for years.

This time also , the treatment is the usual 6 months sessions. We were sacred but things went well. He had no side effects, he did not loose any hair, no vomiting, no nausea, nothing at all. he did his chemo and went home for each of the 3 days of the first month. He was home drinking lot of water, eating food and when asked he said it was like going for a walk and coming home, what a blessing. He did blood test the next day or after, the lymphocytes count went down dramatically from 86000 to 31000, and two days later it hit 3000!! just the normal range. 5 more sessions to go. after 21 or 28 days, he started session 2. The doctor reduced the bendamustine dose from 100mg to 80. since his response was good. things went well just like session 1, no side effects. 2 days later, viral tests showed the lymphocytes counts were going down more from 3000 to 1700. then another 2 days later, they kept dropping to 970...but the bad news was that his neutrophils took a bad hit, really bad, they kept dropping all the way to 0, yes they ve reached 0. his entire WBC reached 0. the doctor was scared, she said she never saw a case like his or heard of one, she even cried we had to take him to quarantine and wear masks. Talked to some friends at MD anderson and they were puzzled as well. He basically had no immunity. but he was doing fine. The Doc gave him G-CSF aka neupogen 38mg to stimulate the stem cells to grow into white cells, without success for 6 days it was so so so scary. But we had to hold on strong, so did my father. on the 8th day, She increased the dose of the drug , neupogen , to 48mg. the next day his neutrophils were restored to 3600! magic! thank god! and he was out of the clinic.

So that is 2 out of 6 sessions. Due to the this toxicity, she had to stop the treatment in May 2019. afterwards, his blood counts restored to better and his is on a complete remission now. the only issue we re looking into now is the low platelet count. his platelets as of last week are 97000, whereas the minimum required is 150k. The Gama globulins are low as of two months ago, it seems to be a late side effect of bendamustine. He is gaining weight slowly but surely, he is back to his normal walking activities, his spleen size is normal now after been enlarged, no anemia...now we re trying to get him on Ibrutinib since chemo proved to be toxic for him.

I hope your partner's treatment goes better than my father's. Please ask them about preventive methods for Tumor Lysis Syndrome, watch carefully his neutrophil count and discuss the doses. the usual dose of of bendamustine is 100mg, but dont be shy to ask them to reduce it in light of the response/WBC. Best of Luck.

[pollyg2016 in reply to mkawass]

Wow, your father really has gone through the wringer! After his first session on Bendamustine and Rituximab, my partner said his lymphocytes were going down slowly. He has developed thrombosis in his arm which he is getting daily injections for. He has lost a lot of weight and has now developed a red rash over his body. I will tell him to keep an eye out on his neutrophils.

[mkawass in reply to pollyg2016]

I am sorry to hear that, but i pray that things get better and they will the most important thing here is to keep his moral high. Keep an eyes on all his WBC. I think he lost weight due to Anemia, correct? does he gave an enlarged spleen?

[pollyg2016 in reply to mkawass]

Hi Mkawass, He has since developed thrombosis in his left arm, which he is now having daily injections for, most probably, the next six weeks or more. His platelet count came back yesterday and it was 50,000 which is low, so we're thinking he might need to get a blood transfusion. His spleen was enlarged is very slowly reducing, but he can still feel it. Also because his left arm has thrombosis, they are using his right arm to administer the chemo and also to take blood. The veins are now getting harder and harder to find and he's looking like a pin cushion. It usually takes about 5 attempts to find a vein. Did your father has this problem?

His mouth is constantly dry, but I have to nag him to drink enough water.

[mkawass in reply to pollyg2016]

Hello Polly,

My father had low platelets and they are still low even now, though they increased, as of last week he is at 97 000. We will wait this month and check again. He might have a specialist run some tests on the baby stem cells that turn into platelets. But we hope this is just a side effect that will correct itself. My father had a platelets transfusion when they reached 30 000 after that neutropina episode. The spleen shrinking is a good sign. My father did not have thrombosis. Regarding the veins, at some point it was hard to find one, but that was cause he did not drink enough water. Make sure that your partner drinks at least 3 litters of water per day.

Just want to share with you some good new for us. Today we have received approval from the insurance that they will fully pay for Ibrutinib! The doctor recommended it. and it is good to have now. Not sure yet when he will use since he is in remission, but we will find out. Keep up hope, there is always light

[pollyg2016 in reply to mkawass]

Hi Mkawas, So glad to hear that your father is in remission. Yes, the drinking of enough water is a constant nag on my part, he seems to have an aversion to drinking water, even though the doctors, nurses and everybody tells him he has too. He has started to drink more but I would say about one litre a day. His platelets have started to rise slowly, he was tested yesterday and they've gone from 54,000 to 67,000 so a slow increase. He is having surgery to put in a pick line in his chest to administer his chemo now because the veins in his arms are non-existent. It's strange you say that your father was on bendamustine and Rituximab and is now going to be on Ibrutinib. My partner is doing it the other way round. He was put on Ibrutinib when he first relapsed, for three years. After 3years it stopped working and now he's on Bendamustine and Rituximab. This is his second relapse. I thought there was a certain order in which things are done for Mantel Cell Lymphoma, but I'm sure everybody is different. It's great that your insurance company is paying for the drug as I know in the US is expensive. Luckily, my partner was able to get it for free with the UK National Health Service, otherwise, it would have cost £9,000 per month, nobody can afford costs like that! We live in France now, and the healthcare is second to none. There are certain charges for somethings but you get at least 70% of the cost back. Nothing like how it is in the US. Unfortunately, the UK government now want to sell our NHS to the US pharmaceutical companies who will then charge everybody for life-saving drugs. I don't know how these people can sleep at night!

[mkawass]

Hi Polly,

Glad to hear the platelets are rising. To be honest, 1 liter a day is really bad he must consume 3 litters at least. My and my father's trick is to keep a bottle of a liter and half next to him at all times. It makes it so easy to get the daily water fix!

My father has CLL not MCL. but i guess the treatment is very similar. This is my father's first relapse since 2011's first treatment with Fludarabine. Actually, he is getting Ibrutinib in Morocco not the USA. The price if Ibutinib here is also super expensive 9000 USD. I moved back from the US to be with him and the family. I guess sometimes even the Moroccan health care system can be better than the USA's. America's health system is brutal. I have friends who live in the UK, France, Denmark, Belgium and they all talk really well about the health benefits. Here he had to do Chemo (Rituximab+Bendamustine) cause he was in need of it. It took us a little over 6 months to get this approval...Welcome to morocco so chemo was a must. I am going to see his hematologist tomorrow to discuss Ibrutinib.

Since your partner had Ibrutinib for the last 3 years, will it be possible to tell me about his experience with that? what happened? side effects if any? why he stopped? any info will be greatly appreciated.

Thank you

[pollyg2016 in reply to mkawass]

Hi Mkawass, Honestly, I have tried getting him to drink more water and it's so hard. The nurses say that it will help his veins, as they can never find them to take blood. He just says that's too much water for him to drink. Well, he's a grown man, and I've given up trying to force him to if he doesn't want too!

He was told to take 4 ibrutinib tables a day and to be honest, he was OK with them. The only side effect was that he was not allowed to have oranges or grapefruit or any foods that contain them. He once had a fruit pie that had oranges in, he didn't realise. He immediately started shaking and shivering and it went on for about 40mins and then it gradually wore off. It was only looking at the ingredients of what he had eaten that he realised it contained oranges and orange peel. No orange/grapefruit juice either. Lemons were OK. From his first diagnosis, he immediately stopped drinking and thankfully has never started again. The only thing he does drink is non-alcohol beer, and that's only occasionally. He said that before he was put on Ibrutinib he was feeling the best he'd felt for ages, but the results of his blood tests were telling a different story. So they put him on it. He's just said that being on it was fine, only mild feeling of dizziness and the usual tiredness, sometimes. He usually took them in the evening because of the tiredness, so then he could just go to sleep. Again, when it came to stopping, there was nothing obvious on the outside, he was feeling quite healthy, but his blood results again were telling a different story. Initially, he was having his treatment in the UK, but we were transferring his treatment to France, where we spend most of our time. The UK doctors told him to stop taking the medication, so he stopped. There was a space of about a month before he got his appointments in France. So he was without any medication for 4 weeks. During this time his spleen enlarged to such an extent that we thought it was going to burst. It was very scary and he was in a great deal of pain. This could have been because he was told to stop straightaway "cold turkey" without any drugs as all, I always say they should have weened him off the drug first, instead of telling him to completely stop. Anyway, going to the French health system is much better, and he is now on Rituximab and Bendamustine. He's on his third session out of six tomorrow and so far and it has been a bit up and down, especially the developing of thrombosis in his arm, which means he has to have daily injections for the foreseeable future. He has lost an awful lot of weight and it shows. He has also developed a flatulence problem, both ends!! so I have to make sure not to give him anything too spicy or garlicky.

[mkawass]

Cheers Polly,

Thank you for the valuable info. I pray he gets back to normal. He will. It is just a matter of time. Things start awful, feeling weak and all that but it gets better with time.

I just came back from the doctor's, talking about her plan for his future treatment. She said she will not think about starting Ibrutinib until his Gamma globulin count is back to normal. He is getting monthly injections for that. This is a side effect of Rituximab that can happen to many patients. Basically, in case of CLL and maybe MCL, Rituximab targets normal B cells and tumor B cells, in this case the lymphocytes but is not smart enough (hence targeted therapy is better) to not mark the B cells that produce the Gamma Globulins ( some form of important anitbodies). This causes Hypogammaglobulinemia. So please watch for that and you may ask for test to check that. But usually this happens months down the road. Hopefully your partner is exempt

So until his B cells recover, Ibutinib is aside. Right now he is doing very well from 2 does of Bendamustine. She said we can delay it. We are also thinking he is doing well now, let s hold off the Ibrutinb for now.

But when decide he needs it. The main issue is cardiac toxicity. A cardiologist will check his heart to make sure things are ok. Did your partner have to do this as well? from what you have said, he had no side effects all? no heart issues?

[Thomas9349]

Yes I am waiting on second treatment in couple weeks. I have tolerated it pretty good. Definitely my strongest treatment so far. One thing I noticed you just feel like sitting around after treatment but if you can move around some I think it helps a little ,not sure if it’s adrenaline or what but felt better the second day when I played a little golf. Still only operating about 80 percent. Not losing my hair but again just not feeling any where close 100 percent . Hope this helps.

Best Tom

[pollyg2016 in reply to Thomas9349]

Hi Thomas, From my original post 7 months is a long time in Cancer-land!! Unfortunately, after being on Rituximab and Bendamustine for six months, the treatment did not work. Our French doctors then put him on Valaciclovir and Cotrimoxazole and chemo every three weeks. As his options are getting limited, the Consultants have suggested he take part in CAR-T Therapy. His cells have been taken and sent to the US to be genetically modified to him specifically. It is going to be a hard treatment with many serious side effects and six months to 1year recovery period. His treatment is now schedule for beginning of October and he will be in hospital for 4/5 weeks if all goes according to plan (fingers crossed!) The treatment is still relatively new but it is now being offered to more people and the side effects are being tweaked so that they are less.

[Jean49]

I had that treatment for follicular B cell NHL. I was only able to complete 4 cycles, of 6, because I developed blood clots in my lungs. I would suggest speaking to the doctor about this side effect and possibly adding a blood thinner with the chemo.