Bendamustine + Brentuximab Vedotin

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.

Hi Jason,

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. 

Hugs xxx

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.

Hi Badgersfan,

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. 

Good Luck

Mark

Hi Mark,

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?

Hi Jason,

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.

Regards

Mark

Hi Jason, 

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. 

Hugs xxx

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.