My Hodgkins Story + Need some salvage therapy advice

Hi  and welcome to the Community and great to hear that you are in remission........ it’s been a long journey for you but as Nelson Mandela once said “It always seems impossible until its done”

Also good that you have found the Community a good tool for helping you move forward through these early days.

I am sure that some of the HL folks will be along to help with your question from their point of view.

I have a completely different blood cancer. I was diagnosed with a rare Skin NHL in 1999 and only after 17 years did I hear the word Remission for the first time....... that originally was never an option, but it did take two Allo Stem Cell Transplants with cells from my brother...... it was all hard hard work but I have no regrets going on the SCT journey.

You can see my story in my profile by hitting my Community name...... and it would be good to put some information in your profile. This really helps others when answering. It also means that you don't have to keep repeating yourself. Just click on YOUR username, select 'Edit Profile'.

But back in late 2013 my condition became very aggressive. I was told that the SCT route was the only way for me to go as without it I had 2-3 years on the clock........I am now 3-4 years past that final dead line and doing great.

I am still under no elision that my condition will not come back but our focus is on living this second chance as best as we can but the further I get away from my second SCT (over 4 years now) the more chance that this can be long term.

We do have a dedicated Stem Cell Transplant if you find yourself on the SCT Magical Mystery Tour.

Hi ZoT, 

Thanks for sharing your story! Though I've only finished 4 cycles of ABVD and don't know what further treatment will I need, to read someones experience helps a lot.

Hopefully you'll make right decision about SCT, wish you all the best. 

Hi ,

I'm actually on other forums so have a bit more of a world wide perspective on differing treatments for relapsed/refractory HL patients (of which our lass was one, have a read of my long profile for info) and BVB is proving an excellent bridge to SCT. But also in some cases, direct to a decent held remission (sadly not that many though) 

i can understand reluctance to go with the SCT route, but a CR (complete remission) sometimes is hard to obtain, then you don’t want to risk losing that. In our lass’ case, she went through three trials as nothing, it seems, was getting her anywhere, the third being Brentuximab alone. And it was that which got her her very first CR. But as it had been so tough her specialist seriously advised a donor SCT. That’s what she eventually did and got through it, is still in a CR. 

so yes, I’d advise going with your second haematologists advice to be honest, SCTs are much safer now that so many experts are getting patients through them. Being fit and as healthy as possible does prepare you well for it, so eat well and exercise as you’re able in the meantime. 

please do keep posting (where are you treated at present?) 

hugs xxx

Hello ZoT,

Congratulations on your negative PET. It is a big milestone.

I was diagnosed with HLNS, like you, In March 2018. Mine was stage 2B, bulky, extra nodal. I had 2 cycles of ABVD, a positive interim pet, 4 cycles of eBEACOPP, another positive pet with new disease in some lymph nodes, one of which was biopsied as HLNS.

 I was referred to an SCT specialist in October 2018. The plan was 3 cycles BvB, then BEAM with auto SCT, then radiation, and lastly up to 16 cycles of BV. 

Things didn’t go exactly as planned, although it has worked out so far. After the BvB I had my first ever negative PET in December 2018 and we started prepping me for SCT. Unfortunately, my bone marrow was noncooperative, most likely due to the Bendamustine, and wasn’t producing stem cells.

So in January 2019 we went to plan B which was 2 more cycles of just BV and then try to collect again. My blood counts were still too low, so we didn’t even try to collect and instead went to plan C, which was radiation and see how I respond.

I finished 15 treatments of radiation therapy in March 2019, exactly a year to the day from my first chemo treatment. I had a negative PET scan in May, and after a lot of deliberating decided to monitor it without more treatment.

Since then I have had 2 negative CAT scans, the most recent at the end of November.

 I have now been in remission for nearly 14 months without any treatment for the last 10 months. I can’t say for certain whether I’ll stay that way for 5 years or not. My understanding is that I’m more likely to relapse in the first two years, so I’m just over halfway there.

There were a few factors that went into our decision not to pursue an SCT or the 16 cycles of BV. Under eBEACOPP I developed new disease, whereas after BvB and BV and radiation there was no new growth even after I stopped treatment, so this was a significant sign. In addition, I could choose to pursue an SCT later, if I changed my mind and was still in remission, or got back into remission, with no significant drop off in effectiveness due to delay. The odds of an SCT curing me were lower than I would have wanted and the mortality rate was higher than I would have wanted, so my preference was not to jump right into it without delay.

There are other treatments becoming available, such as checkpoint inhibitors, which my oncologist is leaning towards if I relapse, and new treatments are being found regularly, so there may be even better options in a few years. I read just last week that they may have found a “universal” CAR-T that works on a number of cancers (including blood) and doesn’t require dna based personalization (which will make it significantly cheaper). It had been effective when tested on mice, and will start human trials later this year, if I understood the article correctly.

We also decided not to continue BV as I was starting to have reactions to it. Studies had found that patients that stopped taking it due to toxicity had statistically similar outcomes as patients that completed the 16 cycles.

Anyway, I stand here before you as a statistic of one that it is possible to stay in remission for at least a year without an SCT after having refractory disease. I can’t say whether you or others would have similar results, or whether I’m truly cured. Only time will tell.

Sorry for the long winded reply. I know that these decisions are agonizingly difficult, and I hope that I was able to help. Please let us know what you decide to do. Take care, ZoT. I’ll be thinking of you. 

Hi everyone! Thank you so much for the responses. Honestly while the decision is tough, it has also been simple in my mind...and I feel strongly about it. While there isn't much data to show that remission without an SCT holds, I think I owe it to myself and my body to try. This is my first remission since I started down this path, and while I feel fortunate that of course I am in remission and that not everyone is so lucky, I don't think I should jump right into the really toxic procedure straight away. 50/50 is no guarantee, and I still hope to be able to have kids naturally. It still is an option down the road should I relapse, and from what I understand a lot of people going onto SCT have had multiple treatments completed before. I just think in life sometimes you have to take a chance, and I feel I will regret it if I don't at least try and see how long and hopefully permanent this remission will hold. Unfortunately it's cancer and there is no true cure, all doctors have is data to help guide them, but I also believe sometimes you have to take a leap of faith...so that's where I am at at this point. 

I still need to speak to my doctor to see how they react and what the next course of action will be. Not sure if we'll just stop treatment altogether and see where this goes or if we'll go on some sort of maintenance regimen/maybe radiation.

Hopefully my experience will be something like BadgersFan and I'll continue to be in remission. I will keep you all updated on my journey. I've learned you have to be comfortable with your treatment plan. Going into SCT not knowing if its the right step and uncertain of it is no way to go, so this is the path.

Thank you everyone, and keep me in your thoughts and prayers! I will continue to do the same for all of you.

Best!

-ZoT

These life decisions do need to be made weighing all the information available and with no regrets all in the hope that things will turn out good - let’s look for this in your case.

Always around to help and listen.

Will keep you in my thoughts and am sending good vibes and wishes. 

Please update as and when, 

hugs xxx

Hi. I’m sorry that You’ve run into so many setbacks. I can’t imagine the emotion till this experience has taken. One perspective could be that perhaps doing the stem cel transplant would give your body a reset. I have to admit that I was terrified that I would have to go through that. I want you to know that you’re in my prayers and thoughts. I know it’s tough but dont be afraid of it. You need a big baseball bat to kick your cancers butt.  All of the options are toxic in one way or another. You will get through it all and wonder how you did. 

lorraine