Immunotherapy

[Bcerebe]

Hi,
Has anyone had any luck with immunotherapy for recurrence of TC? Already had BEP, HDC with Stem Cell Rescue, and RPLND. Thank you for any insight.

[Davepet]

Is this being offered to you? I have not heard of anyone working on immunotherapy for TC but it might be out there. What sort of response did you have to earlier treatments?
Dave

[Derjayger]

Hi,
a guy from a german board had some luck with a combination of drugs. Here is a report about him: http://austinpublishinggroup.com/hem...-v5-id1196.pdf

[Bcerebe]

Davepet, The BEP began in Dec 2016 through March 2017 but did not do the trick. The AFP dropped significantly but did not normalize. The HDC with Stem Cell 3 rounds normalized my tumor markers by August 2017. Had two surgeries to remove teratoma. One was a neck mass, the other was the RPLND with extensive mature teratoma removed, as well as a kidney. But March 2018 the AFP began to rise 8, 15, .. almost doubling every 2 weeks. April 26; 2018 AFP was 68.1 and we were told Systemic Recurrence. Scans showed mass as well as enlarged lymph nodes. GEMOX chemo for palliative care or immunotherapy clinical trial through Sloan Kettering Memorial. They did not accept us. Einhorn does not have a trial at this time but soon he said. MD Anderson in coordination with Dana Farber has an immunotherapy trial and we have been in talks. Our oncologist has read inclusions and exclusions and is trying to make it happen. When at Sloan we did do the Impact test but still waiting results. The GEMOX was started in meantime but haven’t been able to complete full round. Only two day ones of a cycle with the 2nd day one being a 20% reduction due to platelets dropping. They are saying with all the past chemo and stem cell bone marrow is banged up. When starting GEMOX AFP was 86. It has had a partial response and dropped to 34.
Thank you Derjayger for the report.

[Mom_of_four]

I asked the leading doctor at Wake Forest about this and he said they hadn't approved it yet for this type.

[eodtech2001]

I wont swear to it but i think i read somewhere the moffit-davis in the Tampa area might i say might be doing clinic trials

[Mike]

Did Memorial Sloan Kettering mention their Make An Impact study to you? With it they do a free genomic profile of the tumor that may have a rare chance of finding an actionable target. Have you had any genomic/molecular testing of the tumor?

https://www.mskcc.org/research-programs/molecular-oncology/make-impact

If you haven;t looked into it , then it may be worth it. If there is an actionable target then the ASCO's TAPUR study may be an option to obtain the medications.

https://www.tapur.org/patients

Mike

[Bcerebe]

Yes we did the make an impact test but that was first week in May. Our current oncologist formerly worked with and is friends with Feldman. She has reached out and the results are still not back. However we do have an appointment with her tomorrow. He began a 3rd round of GEMOX Monday and she is checking in on him. Last tumor markers dropped AFP dropped to 18.1 so hopefully not chemo resistant. How can we obtain the genomic/molecular testing of tumor?

[Mike]

Yes we did the make an impact test but that was first week in May. Our current oncologist formerly worked with and is friends with Feldman. She has reached out and the results are still not back. However we do have an appointment with her tomorrow. He began a 3rd round of GEMOX Monday and she is checking in on him. Last tumor markers dropped AFP dropped to 18.1 so hopefully not chemo resistant. How can we obtain the genomic/molecular testing of tumor?

Great to hear that the AFP dropped. Great to hear that you did Make An Impact too. Dr. Feldman is awesome. The Make An Impact results will have the genomic/molecular testing, I do believe it takes about 6 weeks, so hopefully the results are back soon. To my knowledge there are not many actionable mutation targets with germ cell tumors but if the results do indicate a target then the TAPUR Study may help.

MIke

[Bcerebe]

Thanks so much Mike. I am also actively looking for trials because his oncologist said that she doesn’t think the GEMOX will work forever. Immunotherapy trial with Dana Farber and MD Anderson is on our list. Dr E should be having a new trial soon as well he said.

[Trekga]

Good luck finding trials.

[AthenaArtemis]

We did an immunotherapy trial with MSK. Our cancer situation is super weird so I'm not sure if our experience is applicable to anyone else.

We got just 1 dose and the adverse effects were so significant we were briefly hospitalized. But the doctors also saw evidence it was 'working' immediately (we have no markers so 'working' is kind of a judgement call). One theory is that the more it is working, the more AEs you get as your immune system revs up. I also read a paper that germ cell tumors (tc, ovarian, etc) are more likely to have adverse effects than some other tumor types, so just a heads up. They've also recently discovered that people with certain genetic markers react to the drugs by hyper-progressing .

Bummer that Dr E says he has nothing live right now. His guadecitabine/sgi-110 trial looked really promising and the ASCO abstract said there were two CRs so I was surprised it flipped to 'suspended'. I was hoping it was an option for us when the immunotherapy stops working.

We did genomic testing with MSK months ago, and I never got any results, actually.

[Bcerebe]

Athena,
What were the adverse reactions from immunotherapy?
Last time I spoke to Dr. E was towards end of May and he said by end of summer his trials should be up and running. We are currently on the GEMOX palliative chemo. Although because of the drop in platelets it has caused, we have never had a day 8, it continues to be reduced, and the third cycle had to be postponed by two weeks. However he has had a response. AFP was 86 when beginning GEMOX and as of last week it was 14.1. He has a CT scan on a Tuesday so we will know more after that about progression of disease. Since his germ cell also contains teratoma, the scans will be able to determine much more.
Our oncologist spoke to Funt at MSK on Monday and he said to give it one more week for the testing results. How long ago did you consent to the testing for the Impact Test? What is super weird about your cancer situation and having no tumor markers?

[AthenaArtemis]

Your immune system attacks its own organs/joints (in addition to the cancer) if it is sensitive to the drugs. This was our list of side effects, spread over 5 months. Some people get 0, just 1, or all of them.

1. Colitis/bloody diarrhea 15x a day. Required hospitalization.
2. Liver enzymes way too high. Asymptomatic.
3. Pancreas enzymes off the charts high. Asymptomatic.
4. Thryoid/pituitary gland destruction. Asymptomatic at first but starting to see fatigue now.
5. Acne, skin peeling (like sunburned), and rash. Got a cream.
6. Arthritis. Basically, a few isolated incidents of crazy joint pain. Ignored it.

The general treatment is high-dose steroids to suppress your immune system, which you're usually on for at least a month. Sometimes the immunotherapy side effect rate they give you in the trial literature is for a different cancer so it may not be right. Here is a study finding that ovarian cancer (some types are similar to tc) had very high adverse effect rates. https://www.targetedonc.com/conferen...ovarian-cancer On the other hand, some TC patients have tried Keytruda, and it doesn't work, and they get no side effects at all. It's a lottery.

It's hard to explain why our situation is weird without writing a novel, but basically our cancer has a different marker behavior every time it re-occurs. He also had unusual side effects to regular chemotherapy. That's why I was interested in his genome report. We consented back in February. Dr F probably just forgot to give them to us since we're high maintenance patients, given all the problems above.

That is great news about Dr E's trial and also about your AFP improvement! Are you able to do Gemox as an outpatient? Best of luck on that scan. We have a scan next week, too.

[Bcerebe]

We did GEMOX outpatient but after each round ended up in hospital for a UTI. We had our CT scan and unfortunately the AFP tumor markers didn’t line up with the scan. It has progressed. The two masses present in April 2018 were 10 cm and now they are 15 cm and it has metastasized to liver and lung. 😢 almost feels so cruel and false hope. Even his oncologist said prior to scan that the GEMOX was doing something because AFP down to 14.1. He started Rick Simpson Oil on Sunday. Atleast with that, he hasn’t been in much pain and is able to sleep. All I can wish for is no more suffering. He has been through hell and back three times. I hate cancer!