Hello, I am new to the forum, although I have been following it since I was first diagnosed in March. I found many of the posts useful and inspiring. I live in the US on the west coast, so it is the middle of the night here.
First, a little background. I was diagnosed with stage 2be bulky cHL back in March after over a year of undiagnosed itching, and eventually unexplained weight loss and night sweats. I had 2 cycles of ABVD however my interim PET scan was positive so I was upgraded (or downgraded depending on your point of view) to 4 cycles of escalated BEACOPP. I had a follow up PET/CT in September and it came back positive with metabolic activity in a new lymph node in my neck compared to my interim PET. The lymph node was surgically removed and the pathology came back positive for cHL. I was not terribly surprised by this result as my itching had come back and actually would have questioned the result if the pathology was negative and probably would have asked them to find something else to biopsy. Still, all of this was a hard pill to swallow and I'm still trying to come to terms with it.
The plan going forward is that I will get a port inserted tomorrow (I previously had a picc which was removed) and will start a 3 cycle combination of bendamustine + brentuximab vedotin on Monday (assuming the insurance agrees, otherwise I will get in-patient R-ICE). This is a relatively new treatment recommended by a specialist referred to me by my oncologist (both of whom are part of the same medical organization but at different sites in my city). There is a paper published in April this year showing success with this protocol as a salvage therapy for relapsed or refractory HL. If this treatment does get me to remission (or near enough), then the plan is for me to have an autologous stem cell transplant around the end of the year and after sufficient recovery I will get radiation and 16 cycles (11 months) of brentuximab vedotin.
I was wondering if anyone has any familiarity with bendamustine + brentuximab, or either of them for that matter. Did it get you to remission? I'm worried that since the ABVD and BEACOPP didn't get me to remission, that this might not work either. How hard was the treatment, what side effects did you have? I've heard from the doctors that it falls somewhere in between ABVD and BEACOPP, but I'd like to hear more from someone who has actually been through it.
-- Jason - BadgersFan --
Hi Jason BadgersFan and welcome to the Online Community but always sorry to see folks finding us.I am Mike Thehighlander and I am dropping in past from our dedicated Stem Cell Transplant (SCT) Forum (link at the bottom) just to say hi and make you welcome.
As you have been looking in on the site you will have an understanding how things work and you will find the HL folks to be very supportive.
I can't help you much with regards to your treatment plan as I had NHL and totally different chemo but I do understand a chemo journey and also the SCT rollercoaster having been through two Allo SCTs with cells from my brother so come over and see us when required.
Lets look for the HL folks to pick up on your post and help you along the road. Blood cancer treatment is not a sprint but a marathon and from what I have seen on your post and profile you 'get' this.
All the best and we are always around to help out.
Mike - Thehighlander
It always seems impossible until its done - Nelson Mandela
i understand from the USA folks who have tried B&B that it can work really well. Brent can cause peripheral neuropathy but this will improve, given time. Benda is an old chemo drug which had been ignored for some time, but in combination it seems to do even better than Brent alone in many cases. Brent again is used for maintenance far more in the US than here in the UK.
if and when you feel so inclined, do join the SCT for blood cancers group as if you’re heading for an auto you’ll get lots of ideas and help along the way.
Thank you Mike. It is great to finally ‘meet’ you.
I got my port put in today. I previously had two lymph nodes removed from my neck and had minimal pain that I was able to manage with just Tylenol. For some reason this one hurts worse, which I didn’t really expect. It doesn’t help that they put a dressing on my neck with the sticky part on top of my 3 week old healing incision from my previous surgery to remove a lymph node.
My B&B treatment has been pushed back to Tuesday since they still haven’t gotten approval from the insurance company. Hopefully there won’t be more delays, but I won’t be surprised if it takes a few more days for everything to get worked out.
Hello moomy. Thank you for your reply and the head’s up on the peripheral neuropathy. I still have some in my fingers and toes from my BEACOPP.
As I get closer to the sct I’ll start spending more time on that forum. Right now I’m pretty nervous about it, so I’m trying to focus on just the near future and my upcoming B&B treatment, if that makes sense.
Hi Jason and it is great to connect across the big pond. I have a few folks over on the West Cost on the NHL forum I connect with so if they all come to visit the Scottish Highlands as they all have said I will have to get a few more bottles of Single Malt ;)
I read your profile and its makes me reflect on my long 18 year journey but in reality most of the action was over the last 5+ years. Taking every step and day at a time is the only way forward and yes, once you have completed this journey you will most likely do some changes to your profile as the road is full of twists and turns but keeping your eye on the Greater Good is so important.
I did not have all the elements of BEAM as my NHL was a skin presentation so Radiotherapy was used a lot in my conditioning for both my Allo's but still did have to have the M hit before my second SCT but did OK with it, it was getting my brothers Stem Cells I took an unexpected reaction to and it was thought it may have been the way the cells had been preserved but that is old news now.
I see the a cancer journey to be like a climb up a craggy Scottish Mountain. These mountains have well trodden paths with little cairns put up by folks who have walked the paths before us. At each cairn the path divides in two - these are the points of decision..... like how we deal with side effects, the mental and physical challanges, the picking our selves up 'again' times.
We do have to look very carefully at where each track will take us. Do we knuckle down and tough it out and keep climbing up or do we take the low path and keep going round the hill and possibly not reaching the summit...... not seeing that view for the first time.
But when you look at the cairns they are always just on the tracks that will lead to the top, so each stone that is put on the cairns is a "yes I can do this" decision......... keep putting the stones on the 'yes' cairn....... and every now and then have a look back down the hill and see the starting point and all the little cairns on the paths you have taken.
All the best and always around to help out and give encouragement.
I too have refractory HL and was pet-positive after both ABVD & BEACOPP. I then underwent Brent which finally got me into remission so yes it certainly works short term. The side effects with me as with most was slight neuropathy and I didn’t get anywhere near sixteen cycles and most people don’t for this exact reason.
Thanks for sharing your experience with brentuximab. The plan is for me to get 3 cycles of brentuximab and bendamustine, then a pet scan. Do you remember how many cycles it took you to reach remission? I’m not quite sure what the plan is if I don’t reach remission. I can imagine getting more cycles if I’m close. The specialist also mentioned the possibility of using an immune checkpoint inhibitor, but I think that really only applies if I have no improvement.
I read your profile and saw that you’ve run the Jersey marathon. I’m not a runner, but my wife is. She just ran the Portland marathon a week ago in 3:43:44. Running has been a great release for her as my primary caregiver.
I wish you success in your treatment. I saw that you will get a haploidentical sct. Do you know when that will be?
Firstly congratulations to your wife for completing the Portland marathon and in a very respectable time. It’s especially commendable due to what you are going through as a family. The Jersey in question for me is in the UK and not in the USA and I can only dream of getting back to them days.
I had 4 cycles of Brent before having a scan which showed all existing areas had completely gone but one new area had appeared. I then had more Brent and another scan which showed me to be in remission. I thought I had 6 cycles in total but my wife is sure it was 7 so I will go with her better judgement if not just to keep the peace in the house. My consultant has already said that he would not like to give me anymore Brent as i was already starting to suffer tingling in my hands although this was only very minor.
I had my Autologous SCT in July of this year and have unfortunately relapsed already which is why it has been suggested I have another SCT but this time from a donor. My team have had problems locating a suitable unrelated donor so we are hoping to use my sister who is a half match for a haploidentical SCT but there is no timescale for this yet. I start Nivolumab next week and will just have to take it from there.
Good luck going forward.
congrats to your wife, that’s a great time for a marathon!
daughter’s HL was obstinate, but Brentuximab was the first of her trials to work fully for her and from what must have by then been a stage 4+, her PET scan after 4 treatments showed a CR, the first treatment in seven and a half years to do so! So they completed 6 treatments and then advised the allo. So yes, Brentuximab can work alone too for some folk.
I wish you luck next week with your nivolumab. I hope that it is able to get you into remission for your sct.
I just got a call that the insurance has approved my bendamustine + brentuximab treatment. My oncologist had to call into a review board meeting to get it approved. I start treatment tomorrow morning. The clock starts ticking towards my sct.
I had my first bendamustine & brentuximab treatment today. It went very well. I’m recording my experience for future patients who undergo this treatment. Perhaps it will become a blog in the future.
Big picture, I’m receiving this treatment as salvage chemo following 2 cycles of ABVD and 4 cycles of escalated BEACOPP which did not bring me to remission. This treatment is based on a study published in April this year showing success for relapsed and refractory HL. The study used 2 to 6 cycles, I will receive 3 cycles and then have a pet scan around the time that cycle 4 would begin. Each cycle is 3 weeks long. Unlike BEACOPP, there are no dietary restrictions (you don’t really miss foods with tyramines or even know that tyramines exist until they are gone).
As typical for day 1, my nurse drew my blood for tests. I got to use my port for the first time and i was happy with it. After that my oncologist came into the exam room and we talked about the treatment, and then I went to the floor for treatment.
Similar to ABVD and BEACOPP they gave me premedications which were Tylenol, benedryl, zofran, and a steroid (the same one that they gave me with ABVD).
The benedryl made me very drowsy. I slept through about an hour of the treatment, as a result.
I got the brentuximab first and it took only 30 minutes. After it completed they observed me for an hour to make sure that I didn’t develop a reaction to it. This is when I fell asleep. This one hour observation was just a one time thing, so it won’t happen in subsequent cycles. Ironically, I woke up and both my arms were numb and tingling. I thought this was too soon for peripheral neuropathy, so I shook my arms, and sure enough they had both fallen asleep.
After the hour of observation, I was given bendamustine for just 10 minutes. Afterwards my nurse flushed my line a few times, filled it with heparin, and I was free to go home.
On day 2 I will get just 10 minutes of bendamustine and just two of the premedications. On day three I will get a neulasta shot and then I’ll be done with the first cycle.
Overall the first treatment was easier than ABVD and BEACOPP. There was no adriamycin requiring drawbacks to ensure that the medication hadn’t escaped my veins and was killing tissue. Nothing burned going in like the vinblastine did (I had a simple I.V. back when I had ABVD). The total infusion time was shorter too, compared to those protocols.
I had compazine 9 hours after they gave me zofran and then took zofran 3 hours after that. So far no nausea. So far no other side effects, except I did take a nap this afternoon (so that makes two naps today) so maybe fatigue was a side effect.
I expect that things will get much harder going forward. In a week I’ll have low blood counts and bone pain from the neulasta. The treatment will build from cycle to cycle. At some point my peripheral neuropathy will get worse. The nurse told me that they can adjust the dose when that happens.
On the plus side I may have solved the neulasta bone pain issue that I had with BEACOPP. Back then I took Claritin that we had previously bought that you put on your tongue and it dissolves. Today we went to buy more and found that the pills have double the dosage. It turns out that when I was on BEACOPP, I had bone pain in cycles 1, 2, and 4. In cycle 3 I was in the hospital. They gave me Claritin pills and I didn’t have bone pain that cycle.
Anyway. Those are my observations on day 1 of brentuximab & bendamustine.
This is great Jason and very helpful for others going on the journey.
Keep on keeping on.
Good to hear it all went well Jason. Keep it going.
I have just been told that I will be starting Brentuximab & Bendmustine from tomorrow - was meant to start my second cycle of IGEV (salvage) today but it has been cancelled last minute since seeing my consultant as my tumour has returned between cycles ...
I just wondered how you are finding your first treatment? What your side effects have been like etc?
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