Bendamustine + Brentuximab Vedotin

Hi all,

good to hear you’re all comparing notes, Nikki, so sad to hear about your hubs’ spread and hope it can be successfully zapped. 

I’m keeping fingers firmly crossed for you all that the latest treatments kick the HL properly to touch and you can move forward.

sending lots of hugs xxx

I finished my day 2 of cycle 2 yesterday. It went very well. Like the first cycle, I woke up yesterday with a very flushed face and my eyelids were extremely swollen. All of this was due to the dex.

I had zofran at home before my appointment so they didn’t give me that as a premed, but they did give me more dex after consulting with a physician’s assistant.

They gave me bendamustine for 10 minutes and I was done. HopefulMummy said that her dose was for 45 minutes, so I asked for more details. My dose was 200 mg of bendamustine in a 50 ml solution. 

I woke up this morning with my face flushed again and puffy eyes. I go for the neulasta shot in a couple hours.

My leg pain has been better the last couple of days. I suspect that it is due to the dex since steroids reduce inflammation. I still have my massage appointment tomorrow.

HopefulMummy —

How are you doing in week 3 now?

I’m not sure if the heartburn is tied to the dex, especially considering that the heartburn lasted for weeks, but we only got the dex on days 1 and 2. There is no guarantee that we will get the same set of symptoms from the chemo, so you may have just been lucky. You’ve also mentioned that you have not had much of an appetite, so maybe that is playing a role in this.

Nikki —

How is your husband doing?  Has he noticed any differences with his side effects between cycle 1 and 2?  When is he getting his next scan to determine if B&B is working for him?  I’m going to get a pet/ct at the end of cycle 3.  If your husband gets into remission, will he get a stem cell transplant? How many cycles of B&B are they planning to give him?

Mark —

I hope that you are doing well. How are you doing with your nivolumab? It sounds like the side effects have been minimal so far.

Take care, everyone. 

Hi Jason

I'm glad all went to plan for you and you have ticked off the first days of cycle 2! I hope it is going as smoothly as possible side effect wise and I am glad to hear the legs are slightly better at the moment! How was the massage? And how are you doing today?

I'm doing very well this week, feeling pretty 'normal', have decent amount of energy etc. I went to pre chemo clinic yesterday and my bloods were looking amazing! (WBC 6, Platelets 119, HB 109 and neuts 5!!) My consultant told me to treat myself to a takeaway, so we had Chinese for the first time in 5 months .. YUM!

They have changed my protocol to include dexamethasone tablets (8mg) on days 1-4 (along with some ranitidine) , as she was concerned about my weight loss and wants to avoid me losing any more. Hoping they help with the appetite and perhaps they will make me a bit more 'with it' than I was first time around .... She has also removed the Cyclizine I was taking. Apparently, the other consultant I had seen had prescribed 'too much' which actually reduces the effectiveness - I'm wondering if this why I felt a bit nausuous and unable to face food even after having the usually brilliant Aprepitant. She wants me to consider being an inpatient next time though as she was a bit worried about my confusion and fast pulse the first couple of days. We left it that I would continue to be an out patient on the promise that I or my partner call them and that I go in if i experience the same next week.. I'm now going to have my PET after this next cycle rather than after the full three. This is so she can decide whether to go ahead with the third or get me zapped with some radiotherapy! 

Also wondering how Mark is getting on too!

It's strange that we have never met but I do wonder how everyone is doing :-) 

Xx

Hey guys.

Im doing fine thank you. I was back in hospital earlier today for the second part of cycle 1 of the Nivolumab. Happy to report that things are still going well and I don’t feel any side effects yet but I also don’t know if it’s working yet but my next scan will hopefully answer that. The hospital is only 5 minutes from my work so I was able to go in afterwards and carry on working. 

I had a meeting with the consultants in Plymouth this week who have advised me that they think my best chance of cure now is to have a transplant from a 9/10 unrelated donor rather than a haploidentical from my sister. They have discussed my case a number of times and feel that the chemo regime given with a haploidentical will not be strong enough to get rid of my lymphoma due how stubborn it’s been so far so feel the unrelated donor and the stronger chemo offers the best chance. Just another twist on the SCT rollercoaster!

Anyway I must dash as I am out for an Indian and the talk of Chinese is making me feel very hungry. Glad you enjoyed the takeaway! 

Good luck guys. 

Mark x

Hi Mark,

So pleased you are tolerating the Nivolumab so well. Really hope it is doing the job, when will you have a scan? (If you have mentioned before then I have forgotten, sorry!)

Have they started to look for a donor? I was told that the sooner they find someone the better as they can be 'ring fenced' to stop them being used by someone else. Sounds awful in a way if someone else needs them too but you have to do what you have to do I suppose!

The rollercoaster seems never ending sometimes but I guess we need to remember that it will come to an end eventually and to just hold tight until it does!!

Hope the Indian was as amazing as my Chinese...!

Xx

Hi Jason-

My husband also got heartburn for a few days after the chemo, so I believe it’s most likely related.  The biggest difference we’ve noticed between cycle 1 & 2 is the facial swelling, puffy eyes, and leg/ ankle swelling.  Which all has thankfully subsided for the most part.  He also has a cough which could be the hodgkin’s or possible left over irritation from a recent lung biopsy or a side effect of BV - we really have no idea.  Oh – and also he has diarrhea for a few days, but that usually goes away too.  No neulesta shots for him.  His WBC actually shoots up after the chemo, and then eventually goes back down to normal levels.  The goal since January last year has been to get to transplant, and it will be an allo.  I was at first terrified of the procedure, now I’m just hoping we get there.  His next PET is on Monday, they planned to do 2 cycles and then scan.  We met with radiology yesterday and he starts next week.  They want to do 15 sessions.  Really hoping it all goes well.  Hope you enjoy that well deserved massage and you recover from the treatments quickly!

Hi Hopeful Mummy –

Yes, transplant is the goal- hahah!  Lately it seems to be getting farther and farther away from us, but just hoping to get there and it goes well.  I agree that I have been a good support for my husband (hahaha), but he has also been an incredible support for me.  He loves cracking jokes, which gives me comfort that he can still find humor in all of this darkness lately.  Even cracking jokes with our healthcare team, so they feel more at ease.  Maybe we will do a stand up comedy routine when he's better - we have a lot of cancer jokes!  We are just always there for each other no matter what.  He’s a wonderful life partner.

I hope you have a good support system too, especially with the kids.  My husband and I are pretty much exhausted all the time, I couldn’t imagine taking care of some kiddos on top of that.  Do you have family or friends nearby?

Hoping the Dex will help with the weight gain.  My husband will get funny cravings about a week after chemo that have included fried chicken, biscuits, meatball sandwiches, donuts, tacos, ribs, pie!  Whatever he wants, he gets!  He lost weight over the summer from the clinical trial he was on/ multiple hospitalizations, and the weight gain has been a real struggle.  He’s put on about 10 pounds over the past 6 weeks, which is a huge victory!  He’s skinny to begin with, when he loses any weight it’s very noticeable.  I finally broke down and bought him a big supply of boost/ ensure (not sure what the English equivalent is) and that seemed to help too.  We were doing smoothies with protein powders before that and he wouldn’t finish them and eventually was grossed out by the smell and texture.

My husband has had a fast pulse for months now.  The highest it ever got was 130s.  Now it sits between 100-120.  There is a lot going on in his body, but it can sometimes happen when you are anemic.  He gets blood every few weeks, and his pulse normally drops a bit once he gets blood.  Not sure if you have this issue too, but maybe it’s related?

I liked how you said that even though it’s strange we’ve all never met, but we think about how each other is doing.  I feel the same way.  I’m so happy that forums like this exist.  I find it easier to talk to you guys than to family or friends sometimes, because we can all relate on some level to what the other is going through.  Sometimes our closest ones don’t understand because they are not in the trenches with us.  It’s so nice to know we are not alone, and we are all in this together!

Thanks Moomy!  It’s always nice to hear from you!  Hope you and your daughter are well! :)

Hi Mark!

I know you’ve had a rough ride too.  That’s a bummer that the haplo may not be the best option anymore.  I don’t really know much about haplo transplants, but want to read up on them.  Hopefully they can quickly find you the donor you need while you are receiving treatment.  I can relate on the stubbornness of the disease, it's extremely frustrating.  My husband’s is SO stubborn, sometimes we joke that it’s as stubborn as him.  But hoping that both you and my husband get the final victory over this darn disease.  Cancer is really a jerk!

Nikki

Hi Nikki

I will have everything crossed for you both on Monday! I genuinely hope that you finally get the positive news you have been waiting for for so long!

We have a small support network but we have always been fairly private people and are just used to getting on with it ourselves! My partner is fantastic too, it's been 15 years now - I think we both need a medal! He lets me wallow when needed but will give me a kick up the backside and encouragement too!! My mother in law will have the older two children overnight on occasion to help out and she has said she will come and stay here a few nights a week when I go for transplant to help with some night feeds with the baby too. My partner does so well with the three of them when I am out of action for a few days following chemo or if I have a short hospital stay, but it is tiring and she understands that having been a single mum to 4 boys! My Dad takes me to all of my appointments and is there every visiting time when I am an inpatient. He is also happy to bring shopping if we need a few bits! There are one or two school mums that have offered to help out too but I think I've been saving their offers for when we are really desperate! I don't want their generosity to wear thin too soon...

Re the fast pulse -im usually around the 90s - 100s but it was going so fast I couldn't count it the first few days! I was physically shaking from the speed every time I moved and would guess it was nearing the 200's...! I did have a lemonade the night of chemo and I'm wondering if I had a bit of sugar overload, though the consultant seemed more concerned .. hopefully it won't happen next time!

Yes I do hope I can put on a bit of weight - your husbands 10lbs is impressive! I had thought about those drinks, I think if the steroid doesn't help this time I will ask my nurse about them. In hospital they whisk ice cream in to them too so they sound like they could be 'fattening' !!

And yes, we do all understand and that really helps. I try to keep medical jargon to a minimum with friends but they still seem quite confused with it all and it's hard and pretty tiring to really explain things then.

Have a lovely weekend - I may have told the school a very small fib this morning that the children were under the weather ... So we are off to the sea side! It's a bit cold and wet but we only live once!! Never been a spur of the moment person - I'm feeling very naughty!! Oops!!

Xx

Hi all,

Nikki, 10 lbs weight gain is brilliant! I think we can get Ensure here but the dieticians suggest all sorts, And daughter (who also was incredibly slim) had the ones she was advised with ice cream whisked in too. Hope he gets to a place for an allo! 

HopefulMummy, and Jason too, I really hope B&B helps you both reach remission too. Glad that you have a support network, parents are useful folk! 

hugs xxx

Wow, there was a lot of activity on the forum yesterday. I’ll try to respond to as much as I can. 

My legs weren’t hurting yesterday morning, due to the dex, so I walked our dog for about 70 minutes. The exercise felt good, but my legs were spent by the end of the walk, since I haven’t been getting enough exercise. My massage went well yesterday. My only complaint was that my legs weren’t hurting at the time because of the dex. It was a medical massage, consisting of long slow application of pressure to my muscles. She basically covered my whole body, except she skipped my chest and neck because of my port and past surgeries there. Afterwards I treated myself to a burger. 

After I got back home, I had a long nap. I woke up around 6 and had a rushed dinner, then we went to pick up our son from college for the 3 day weekend. My birthday is next week, so we will celebrate it this weekend. It was a four hour round trip, so by the time we got home, it was time for bed again. Sadly, the leg pain started to come back last night as the dex has been wearing off.

My pulse and blood pressure were elevated for about a year before I was finally diagnosed. During that time, my systolic was in the 130s and my diastolic was in the 80s and 90s. Since starting chemo back in March, they dropped back to normal values for me, systolic between 100 and 115 and diastolic between 60 and 75.  My pulse was up between 125 and 135 for almost a whole year before I was diagnosed.  It hasn’t responded as well to the chemo, and now tends to be between 100 and 120.  For perspective, my pulse used to be in the 60s when I was healthy.  I’m very worried about all the mileage that I’ve been putting on my heart the last 2 years. The original explanation for this was that my mediastinal mass was pressing against blood vessels attached to my heart, but I don’t think that is the case for awhile since the tumor has shrunk to half it’s original size. So I’m not exactly sure why my numbers are still elevated. I’ve also been blaming it on anemia as well, but as of my last blood test, I’m no longer anemic, although barely so.

Nikki, I’m sorry that your husband is anemic enough that he’s still getting blood transfusions. I was severely anemic back when I was on BEACOPP. The worst time was my third cycle. I went in on day 8 (a Wednesday) for my chemo and they did a blood test. My hemoglobin was in the high 7s so they ordered a blood transfusion for Friday. Friday morning came around. I woke up and went to use the restroom, where I literally exhausted myself. I had to yell down to my wife to have her walk me back to the bed.  I had absolutely no energy, and she had to dress me while I laid half on the bed with my feet on the floor. I was nauseous so I couldn’t eat breakfast. When it was time to go, she and my son helped me to walk downstairs to the car. I used a wheelchair at the clinic and started to get severe chills in the waiting room. When I eventually made it to the chemo floor, I threw up twice, and they quickly wheeled me into a private room. They ran another CBC and my hemoglobin had dropped over the two days to 5.6, on top of that my WBC was < 0.1 meaning it was below the value that could be detected by the machine and they simply reported my neutrophils as 0, although they weren’t really measured. It turned out that I also had a fever, so at the end of the day they shipped me off to the hospital, where I stayed for 5 days waiting to get back an immune system.

While I was in the hospital I developed thrush and my mouth was so sore that I couldn’t eat solid food, so I subsided on ensure and milkshakes. Unfortunately I couldn’t have chocolate due the procarbazine and it’s requirement for a low tyramine diet. I really really hated that low tyramine diet. 

Changing topics to support. Our family is pretty isolated. My family is in the Midwest, and my dad’s health has deteriorated to the point that he can’t really travel or take care of himself for that matter. My mother died from breast cancer when I was a teenager. I have one brother and he’s been out to help twice. My wife is actually from China, so all of her family is there. Her brother just got his visa and is planning to come out in December before I start BEAM and will be here while I’m in the hospital for the transplant. After that, my aunt who is a retired radiologist is coming to help after I get out of the hospital. Aside from that, we get help now and then from friends. We are lucky that we have older kids, so we can leave them on autopilot. The only issue is that my wife needs to drive our daughter to swim practice everyday, but she’s been skipping it a lot due to knee issues. We also have our dog who is very demanding of our time (she’s so spoiled).

One of the friends that has been helping has a nephew on the east coast that also had HL. He ended up doing ABVD, BEACOPP, and then a clinical trial for (drum roll) brentuximab and bendamustine. We just found out yesterday that B&B was his clinical trial. He needed two sct but he is now in remission. 

I agree with what everyone has said about supporting each other. I felt quite alone when I started B&B. I’m thrilled now that we have a small group of three of us going through it together only a few weeks apart so that we can share our stories and provide advice to each other. At the same time, I’m sorry that we all have to be going through this in the first place.

Its time for breakfast. I hope that everyone is doing well. Take care.

Hi Jason

I'm so glad your legs are doing ok at the moment, I hope that the pain doesn't return when the dex wears off! 

I'm pretty amazed at your long walk, it was a struggle for me to even stand in the shower for almost a week after treatment! I really hope that the change in my meds help with that ...

Your experience with anaemia sounds awful, sorry you went through that! 

And it's great to hear a positive story about your friends nephew - do you know what kind of SCTs he had? I only ask as I have been thinking about what my consultant said about going for an auto first if B&B gets me to remission and wondered whether an allo would be my best shot at getting it first time. Don't really want to be doing it twice! Lol

Hope you have a brilliant weekend celebrating your birthday! 

Xx