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.
HopefulMummy,
I believe that my friend’s nephew had an auto followed by an allo. I understand your thinking about only getting one sct. One of my main concerns with allo is that the body can reject the cells. So you need to worry about graft vs host disease and need to take anti-rejection medicine for the rest of your life. If I’m wrong about this, I’m hoping that Mike or moomy can correct me. My hope is to avoid those complications with an auto. Yes, there is a risk that I’d need an allo afterwards, but there are also cases where people needed two allos, so starting with an allo doesn’t guarantee that you will have just one sct. Anyway, those are my thoughts on it.
After my busy day on Thursday, I paid for it on Friday. By Thursday night the dex wore off and the leg pain came back, and the fatigue really set in on Friday so I slept most of the day (and slept well last night). I think that I was awake for maybe 6 hours, mostly around meals. In addition to the leg pain, I occasionally got shooting pain in my lower back which was new. This pain only came 2 or 3 times and each time I was laying on my side. I was able to shift positions to stop the back pain.
I got an update from the sct coordinator on Friday. I was asleep, of course, when she called, but she left a voicemail. It sounds like they are moving my sct back one week. The original plan, which was completely tentative, was to collect stem cells on the 18th and then start beam between Xmas and new year’s eve. Naturally, I wasn’t really fond of that plan since it spoils that holiday week, and I don’t want to associate that week in the future with beam. The new plan is for me to get my pet/ct on the 14th, and they will collect my stem cells between Xmas and new year’s eve. I’d then have beam in the first week of the new year. While I like this plan better, it messes up my wife’s brother’s travel plans by a week, so he wouldn’t be here for my whole hospital stay. So, we need to look into moving his travel dates now.
Wishing everyone well.
Always an interesting question why medical teams go for an Auto and/or an Allo or one of each or two Allo's.
There are various reasons when two SCTs are done and indeed trying an Auto first is desirable as there is no issue with GvHD and recovery tends to faster but even then an Auto my not be enough due to how the blood cancer has developed so then going on to have an Allo or going straight to an Allo my be the best plan.
I had no options and had to go straight to Allo and was always looking at two Allo's being my plan.
The two Allo's were very different and if the first one had worked I would not have had to be put through the strong (Mustard Gas) chemo but as it was I did have it
Anti-rejection drugs are normally only used during the first 100 days then gradually reduced post day 100 and depending on how the graft goes these would be removed completely in the following few weeks then the battle starts for the graft to take full control.
I had no GvHD after my first Allo but yes it did not work but post Allo number 2 I had various types of GvHD so was on the evil (anti-rejection) drugs for a good 180 days before my GvHD fixed its self. But I will be on antibiotics for life to cover me for some infections as in my case my spleen no longer works and also have a pre-existing asbestosis so I am more open to chest infections but three years on I am doing well and looking NOT to be in hospital this winter
This is why every journey is so different.........but worth it ;)
Hi all,
daughter had an auto first, was rather rushed into it and wasn’t really in a CR so although she didn’t relapse as such, she just failed to fully respond. The 13x13 cm node in her chest had reduced but was, as her Professor (John Radford, at Manchester’s Christie Hospital) put it, still trying to kill her.
she then went through a trial which held her lymphoma stable for something like 2 years, then another which again didn’t work, then Brentuximab on a compassionate basis as then it was waiting for FDA registration, and as that worked to get her fully into a CR, she went through an allo.
yes, the allo runs the risk of rejection so meds are given for that, but as Mike points out, these aren’t for life, simply for as long as your system fights against the new bone marrow. Once that is accepted then the anti rejection meds are tapered off and then stopped. It’s a delicate art at the point (I always believe medicine is both a science and an art) to balance medication carefully to gain maximum benefit. And what is needed is for the ‘new system’ to recognise the Lymphoma and kill it off before it ever gets going.
Do ask questions as and when you need!
hugs xxx
Moomy
Hi Guys,
I agree totally with what Mike and Moomy have both said. I had no issues at all during my auto but unfortunately like Moomy’s daughter it didn’t work for me and I relapsed only a few weeks later. Autos are generally safer than an Allo but both still carry a risk. The drugs they have now at their disposal should help with the GvHD but as I’ve already been told, they hope I get some to help fight the Lymphoma as mine too is proving difficult to shift. With hindsight I wouldn’t have had the auto but this works well for most people so in my eyes it is worth a punt if you’re in remission. The problem with me as with Moomys daughter is I don’t think I was in complete remission when I had it and think the BV had stopped working but again, hindsight is a wonderful thing.
Your teams will hopefully be honest with you and tell you what they think offers you the best chance. Mine told me this week they think my best chance of cure is with an unrelated donors cells rather than a haploidentical from my sister. They feel the chemo with an haploidentical is not strong enough and worry there won’t be the graft v lymphoma due to treatment required after my sisters cells have been transplanted which kills off the cancer fighting T-cells. What they have explained to me makes perfect sense and I am happy to go with this but if I wasn’t I would tell them. At the end of the day it’s our bodies and our choice.
With regards to my potential donor I have a 9/10 match in Germany who’s has agreed to donate to me so it’s just a matter of them being assessed. I’m not going to lie but I’m scared but know that this the right option so I will do what ever is needed. I finished my first cycle of Nivolumab this week and honestly feel as good as I’ve felt for more than 2 years so I’m enjoying myself whilst I can, lots of exercise, lots of socialising with my family and friends and generally just getting my mind and body ready for the next ride on this rollercoaster.
Regards
Mark x
PS, Moomy I stumbled across your daughters website the other day and I know you’ve always mentioned her musical talents but I didn’t fully appreciate just how talented she is, that’s some CV she has, no wonder you’re such a proud mother. xx
Hi Jason
I COMPLETELY understand what you mean about less risk - I would much much rather have an auto as it seems 'easier'! I would just really hate it if I then relapsed and had to go through it all again - but even tougher! And you make a good point, who's to say it wouldn't work?? I need to get and keep a positive spin on it I think!
Sorry you are suffering now, perhaps the shooting pain is from the neulasta..? But I'm glad to hear that you can enjoy the holiday season at home - I hope your brother in law can change his travel plans without too much hassle!
Thanks Mike and Moomy for your comments too. I do trust my consultant and will go with whatever they think is best! I guess I thought (naively) that an allo was a 'stronger' treatment so therefor held a better chance for a long term remission .. it all boils down to just wanting to do it the once I think, though obviously I have no control over whether my body behaves or not after either transplant!
Mark- I think that I'm worried I won't be in full remission before the transplant too. My consultant had said something a while ago about me having an auto and radiotherapy AFTER to kill any remaining cancer, which I did question, as I wasn't sure I liked the idea of still having cancer after the transplant...I wonder if you can request a pre transplant PET to check remission status? I think we are all scared and just 'doing what we have to do' - hopefully one day we will look back and be proud of how strong we were to get through it all. I am glad you have a donor ready and also that you are enjoying life to the full at the moment. Fingers tightly crossed that the Nivolumab is doing the trick as you are feeling so good!
Xx
First off, thank you for correcting my misconceptions regarding graft vs host disease and the anti rejection medicine.
Over the last few weeks I have been trying to avoid thinking about the transplant, because I am very nervous about it. My wife and I had a short discussion about it today. She’s also very nervous about it so she doesn’t like to talk about it either. As a result it has become this big elephant in the room, and it was good to finally acknowledge it and get some of our fears out in the open.
I’m having a pet/ct on the 14th and they will use that to judge if I’m ready for the sct. They are also planning for more treatment after the sct, which will include radiation and 11 months of BV. This is based on a study that showed a higher chance of staying in remission with the extra treatment post-sct. This area of medicine is not as fleshed out as I would like, and the study was limited to just this 11 month treatment, so it has me wondering whether 6 months treatment would be equally effective, or 3 months, etc.
Today has been a pretty lazy day for me. There has been talk of going out for ice cream sometime this weekend when I have enough energy.
I hope that everyone is having an excellent weekend. HopefulMummy, how was your trip to the ocean?
Wishing everyone well.
This is such a useful thread as it does show the complications of coming to a suitable SCT plan to move treatment forward.
I have to say that I did go into both my Allo's with active cancer cells in my skin so I was never in remission pre SCT.
My skin Lymphoma was very difficult to control so the lessons learned during my first Allo SCT helped my team develop the plan for my second Allo SCT. So I had three weeks (30 sessions) of radiotherapy to clean every area of my skin then went straight into a week of conditioning finishing with full on Melphalan then two days stem cell infusion and 3 weeks recovery then out.
Hi Mark, markyflem,
yes, she’s an incredible woman and we are very proud, of both our two of course! But she’s come through in spite of huge set backs, and proves it day by day! She’s playing in the West End for the Tina Turner show for a few weeks, as a ‘dep’ for the regular player. And doing some voice overs (one is the last 8 words for one of the Tesco Christmas advert!)
hugs xxx
Moomy
Hi Jason
hope they are going to give you a reduced dose of BV post auto as it can add to the neuropathy which you might get. But be aware that does improve, nerves grow at incredibly slow rates, recovery of sensory endings is around a millimetre per month or even slower sometimes.
Hugs xxx
Moomy
Hi Jason
Funnily enough me and my partner had a good chat about the SCT the other night too. I'm glad you managed to get things out in the open a bit as well. It is such a scary thing but at least you know that we have all either been there or will be going through it too so you are not alone! I think the most oerwhelming bit for me is the conditioning and having to be away from the children for so long. Though I try to tell myself that if those few weeks give me many more years then it will be worth it!
When you say the 14th do you mean Wednesday? If so, I will be on day 1 of cycle 2 so will say good luck now!!
It's interesting that your team are talking of treatment after and that Mike, you say you had treatment after too - I assumed the SCT would be the final stage! I think I need to be a bit more open minded in the fact that it might not be and that there is also a possibility of a second transplant - just so that I don't completely freak out if/when I'm told that actually, they haven't finished with me yet..!! I know everyone's plans are different, but with mine (and everyone's here I suppose!) being ever changing, it's good to have an idea of all the other roads I could head down...
I hope you managed to get out for some ice cream Jason! Our trip to the sea side was lovely thank you, the rain held off long enough for a walk along the sea front and the kids almost bankrupted us in the arcades!!
Xx
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