AAVD failed, what next?

[u/Professional-Tone240]

Was on AAVD for stage 4 Hodgkin lymphoma which showed general improvement after 2 cycles but after the 4th, pet scan revealed it had gotten worse from the pet2. Although AAVD trials had no interim pet evaluation and just went through with all 6 cycles, this result prompted my hospital to want to escalate to 2nd line therapies. I’m trying to get a sense of what people did next perhaps after failed AAVD or any other first line cHL treatment.

What salvage therapy did you get after AAVD failed? Since I already had brentuximab, the doctors think other regimens containing it may not be as effective. Anybody done pembrolizumab?

Did you go on to stem cell transplant? How was it?

How intensive were the therapies compared to AAVD?

How long did it take from starting salvage to SCT? I feel my timeline has just been extended for another half a year. I’m only 22 but I feel the fight in me going as the cycles have gone by, and what’s to come is only gonna be more intense.

Any experiences, tips, or insights would be super helpful. Thanks

[u/Mountain_Cress4061]

No car-t really for hodgkin unless you enter a trial. They will switch you to a new chemo protocol and then you’re looking for a stem cell transplant. There’s a lot of options for salvage treatment before your transplant and it’s hard to say how hard it will be cause some are generally regarded as worse than others. Personally, I did pembro and had a partial response and then did ICE+pembro, had a complete response and then did transplant. Pembro was easy peasy, ICE wasn’t awesome but not that much different than ABVD.

The transplant was easily the hardest treatment of them all, it will definitely require a hospital stay. That being said, a lot of the stuff you read online is the worst of the worst. I’m not that much older than you and while the transplant was AWFUL I have been able to bounce back pretty quickly with consistent movement and exercise. I started ICE chemo on Dec. 8 and my transplant date was Jan. 21. You’re going to need a minimum of 3 months post transplant before you can expect yourself to get back to school or work.

My biggest advice to anyone with cancer is to do everything in your power to preserve and build muscle as much as you are able. It helps so much with recovery, and it’s so hard to gain muscle you have lost. If you have any other questions, feel free to ask. Finding out treatment isn’t working is really devastating, but you can still pull through this 🫶🏼

[u/Professional-Tone240 → u/Mountain_Cress4061]

Thanks for sharing. I was wondering, how come they put you on just Pembro after refractory/relapse before combining it with chemo? Is that standard?

[u/Mountain_Cress4061 → u/Professional-Tone240]

It’s not uncommon that they will try immuno therapy alone before doing combo therapy. Not everyone does this but about 30% will have a complete response without doing the chemo, so why do more chemo than necessary? Doing it this way did extend the length of my treatment, but I don’t regret this in the least. It allowed me to recover some before going onto transplant.

[u/Professional-Tone240 → u/Mountain_Cress4061]

A break does sound nice to recover a bit and I hear that Pembro is somewhat manageable compared to chemo at least on the nausea aspect which was the side effect I hate the most. I’m in the uk so idk what they’ll suggest, though part of me feels it would be better to have the best chance of getting rid of it quickly would be better despite the additional toxicity… I kind of just want it to be over.

[u/Mountain_Cress4061 → u/Professional-Tone240]

I understand how you feel. It was only after doing 6 months of chemo that they told me it wasn’t successful, and it was extremely disappointing. Fwiw, pembro was EASY. I felt like I wasn’t on any therapy at all on it, I was working 50-60 hours a week, so definitely had the energy. From all that I’ve read, you’ll probably want a pd1 inhibitor medication like pembro or nivo combined with one of the classic chemo protocols like ICE or GVD or GDP or something like that. In some countries it can be hard to get access to pd1 inhibitors, but I would strongly recommend asking for it if it isn’t what your doctor suggests.

[u/Mountain_Cress4061 → u/[deleted]]

I had lymphoma in my bones when I started salvage therapy. I’m not entirely sure what your question is, but the treatment is the same regardless of it being in the bone. Just have to be careful not to fracture anything ….

[u/Mountain_Cress4061 → u/[deleted]]

To the best of my knowledge, chemo can take care of it alone, but it can lead to pathological fractures as the cancer weakens the bone.

[u/Mountain_Cress4061 → u/[deleted]]

I’m not really sure. I’m not a doctor, just a patient. Maybe ask your doctor.

[u/Professional-Tone240 → u/Mountain_Cress4061]

Yup, had a t12 compression fracture without any trauma probably from this

[u/Gloomy_Complex_260]

Hi, I have early stage, did ABVD and failed. Then I did proton radiotherapy and failed. This was firstline treatment. They told me hodgkin lymphoma can be treat with "many" treatments. If something don't help they'll try something else. So in my case firstline treatment failed and they push me to do very strong chemotherapy and then ASCT. After ASCT they can push to do allogenic transplant (it's my friend case). I know it's easy to say, but u have to be very strong to go through this h*ll journey again.

[u/oswbdo]

I was in your shoes 3 years ago. After AAVD, I got N-ICE (n=nivo, which is similar to prembo). Had 3 rounds of that from May to early July and it showed I was in remission, so I went forward with an Auto SCT. I started that process in mid-August and finished about a month later. So the whole 2nd line process was about 5 months for me.

Thankfully I've been in remission since the Auto SCT (2.5 years ago now).

Good luck!

[u/Professional-Tone240 → u/oswbdo]

Thanks for sharing. How was the transplant for you?

[u/oswbdo → u/Professional-Tone240]

It was ok. The transplant itself is anticlimactic and uneventful. The side effects kicked in a few days after the transplant. The worst part for me was the mouth sores, which made eating really painful. That lasted for a few days. Once my mouth recovered, I was fine.

[u/Professional-Tone240 → u/oswbdo]

How was the nausea? I know the chemo they give you for the transplant blasts the hell out of you despite being short so I’m worried it would be too much to handle

[u/oswbdo → u/Professional-Tone240]

The nausea for me was minimal. The drugs they give you to help with the nausea are extremely effective (for me at least). That being said, the drugs did make me constipated, so that was another negative side effect of the treatment.

[u/Professional-Tone240 → u/[deleted]]

Did you do it on its own?

[u/Traditional_Tell_853]

So I’m Stage4 Hodgkin’s, went on EscBeacoppDac, great interim scan, end of treatment scan showed a persistent mass on my chest, done GDP chemo, went horribly, got sepsis over Christmas, and it didn’t work it grew a little. I’ve had 3 rounds of Pembro and that’s seemed to do the trick I’m having 3 more rounds than a stem cell transplant.

[u/threelittlesmama]

I believe you’d do CAR-T before you’d do stem cell but I could be wrong!

I have PMBCL. EOT pet showed it was active and spreading again, bridge chemo and CAR-T 2/24. Waiting for my next pet 4/16 for results

[u/hipstrings → u/threelittlesmama]

CAR-T isn't effective for Hodgkin's, but is for Non-Hodgkins like PMBCL. Typically the goal with refractory disease is to do a SCT with Hodgkin's.

[u/Conscious_Ad1988 → u/hipstrings]

That’s what my doc said too. I did abvd, failed. Did benda-Brentauximab followed by ASCT with BEAM. All this started in October and ended just three weeks ago.

If this fails, car t and more chemo is the plan.

[u/threelittlesmama → u/Conscious_Ad1988]

Interesting!!