Failure of Anti-PD1 Therapy - 1261336

tvoltagg
Posts:30

After a difficult induction therapy of carbo/taxol/avastin led to progression, my wife tested positive for the PDL1 ligand and she was able to enter the Merck anti-pd1 trial. After 5 infusions, we got the results of our first scan and it was disheartening. She significantly progressed and is being withdrawn from the trial. Because of her rare histology of spindle cell (sarcomatoid) carcinoma, as well as her lack of any mutations, we know that there's not much to go on for next steps. My question is what have folks who have no mutations and have failed at PD1 done at this point? Not looking for advice, just an understanding of options at this point.

Tom

Forums
Full Archive

Reply # - January 3, 2014, 08:38 PM

JimC
Posts: 2753

Hi Tom,

I'm sorry that the trial drug was not effective for your wife. As far as further options, although his comments were in the context of maintenance, Dr. West has said this recently about treatment options for sarcomatoid carcinoma:

“I’m sorry that I think you’re very unlikely to have anyone here who can comment on what to expect for sarcomatoid histology, since it’s so rare. Aside from the promising results in a few patients with this histology who received immunotherapies like anti-PD1 agents, there’s really no specific information about it.

Taxol (paclitaxel) is not commonly used as a maintenance therapy, since it has no proven value after 4-6 cycles and definitely leads to cumulative neuropathy.

Avastin (bevacizumab) alone is sometimes used, and it is the more studied approach after carboplatin/taxol/Avastin as first line therapy.

The hesitation about Alimta (pemetrexed) is understandable, since it definitely has some specificity for non-squamous histology and may not have activity in sarcomatoid histology…that’s just not known.

Otherwise, Tarceva (erlotinib) and Taxotere (docetaxel) have each been studied as a maintenance therapy and have some evidence for potential benefit as well. That said, there’s no established best approach in this situation.” – http://cancergrace.org/topic/sarcomatoid-carcinoma-maintenance#post-125…

I hope you will be able to choose an effective treatment with the help of your wife's oncologist.

JimC
Forum moderator

Reply # - January 3, 2014, 09:52 PM

Dr West
Posts: 4735

Tom,

I'm very sorry the immune checkpoint inhibitor trial didn't work out better...as I said earlier, I've been really hopeful that this line of research would be a very needed better answer for people with spindle cell/sarcomatoid histology.

I would agree with everything I said before, which really applies for second or third line therapy the same as for maintenance. The strongest data for NSCLC that has been previously treated is with Alimta (pemetrexed), Taxotere (docetaxel), or Tarceva (erlotinib). I think any of these would be reasonable, though as I mentioned in the quoted text Jim provided, I'd be concerned that the histology-specific benefit with Alimta may not extend to spindle cell NSCLC. In my mind, the decision of whether to recommend chemo or a wild card like Tarceva next largely depends on how much or little benefit a person received from prior chemotherapy. If they responded or at least had stable disease for several cycles before progressing, I'd often favor chemo for someone (assuming they're EGFR wild type, meaning no activating mutation). On the other hand, if they progressed right through first line chemo quickly, I'd likely favor Tarceva primarily because it's a wild card in a situation in which there's very little to lose by looking beyond what you've tried before.

Good luck.

-Dr. West

Reply # - January 5, 2014, 05:47 PM

tikicat
Posts: 28

I am so sorry, Tom. As you know, I share the same diagnosis. I wish I had some advice for you, but I am just a patient. The doctors don't really know what to do with me, either. At this point, I am staying on the trial, but who knows how long that will work or what will happen next. It's tough. Please keep in touch. I'll let you know if I hear anything.

Reply # - January 7, 2014, 02:01 PM

catdander
Posts:

Tom, I'm so sorry the treatment didn't work. How very devastating. I just want you to know you and your wife are in my thoughts.

Feisty D, it's so good to have your input and know you're ready to share new info when you get it. You're in my thoughts too.

Keep us posted
Peace,
Janine

Reply # - January 7, 2014, 06:43 PM

tvoltagg
Posts: 30

Thank you FeistyD and catdander for your thoughts. Also thank you, Dr West for your input. We see Dr Langer at Penn on Thursday and try to figure out where we go from here. My wife does not want docetaxel due to how miserable taxol made her and it ended up being ineffective anyway. With no EFGR mutation, tarceva sounds like a long shot, but she'd try it. We are devastated and hoping for something to try with a possibility of getting some response without knocking her off her feet. At this point she fears pain more than death. What a brutal illness.

Tom

Reply # - January 8, 2014, 12:20 PM

Dr West
Posts: 4735

I'm sorry, Tom. I'm about to write a post about the sometimes very good responses I've seen with Tarceva (erlotinib) even in patients who test negative for the mutation, including a lady yesterday who had a staggering clinical and imaging improvement. I suspect that's a "false negative" that somehow missed a real mutation, or there's enough heterogeneity in the tumor biology from one part of it to another that it could be a sampling error.

I would have to say that I don't think it's especially likely that someone with a sarcomatoid histology will be a major beneficiary of Tarceva, but I think the hurdle of trying it, especially as an already FDA approved agent that can be taken orally for a day or a week or 1-2 months before stopping it, is low enough that it's always worth making sure that someone isn't going to be a lucky winner with it.

-Dr. West

Reply # - January 8, 2014, 03:10 PM

ssflxl
Posts: 204

Tom and Dr. West

In this case, what about using Abraxane which supposedly is more tolerable.

Good luck in your next step

ssflxl

Reply # - January 8, 2014, 03:37 PM

Dr West
Posts: 4735

It's a fine choice for someone who has responded to prior chemo or never received chemotherapy. In someone whose cancer progressed relatively quickly through prior chemo, I wouldn't be especially enthusiastic about the value of more chemo. Abraxane may possibly provide some benefit in patients who have received prior chemo, but we haven't really seen clear evidence of that yet.

-Dr. West

Reply # - January 8, 2014, 09:50 PM

laya d.
Posts: 714

Tom:

Just wanted to join the chorus here in wishing your wife the best of luck. . .with the hopes that whatever treatment option comes next reaps great benefits for her. . .

All my best,
Laya

Reply # - March 30, 2014, 05:38 PM

tvoltagg
Posts: 30

My wife, Joan was diagnosed in August of 2012 with a rare spindle cell carcinoma. GRACE has been a great source of knowledge and sharing with people going through what my wife and I were living. I'm especially grateful to Dr West, Catander and Jim, who have been so helpful and kind.

Last Saturday morning Joan passed away. The radiation effects removed any ability for her to eat and she slowly got weaker until pneumonia took her life. She died peacefully with her family around her. The tumor burden was just too great for her and although the Tarceva was showing good results as third line therapy for someone who was EGFR wild type, it was too little, too late.

After 17 months on GRACE, I will likely just check every now and then. I wish the best for all of you in this brutal battle with the beast.

Tom

Reply # - March 30, 2014, 06:41 PM

JimC
Posts: 2753

Tom,

I am so very sorry to hear that lung cancer has taken your wife from you. I wish there were words to help you understand the cruelty of this disease, but there are none. I hope that as time passes you can find some comfort in your memories of your dear Joan, for whom you fought so hard, educating yourself as best as possible to find the best treatments for her.

Peace to you.

JimC
Forum moderator

Reply # - March 30, 2014, 08:27 PM

Dr West
Posts: 4735

Tom,

I'm so sorry. Thanks for letting us know, and I'm glad we could provide some helpful insight and information when needed. I only wish there were more that any of us could do against such an awful disease.

Please accept my heartfelt condolences.

-Dr. West

Reply # - March 30, 2014, 10:53 PM

ssflxl
Posts: 204

Tom

So sorry to hear of your wife's passing. I hope you will always have wonderful memories of your time together. She is at peace now.

ssflxl

Reply # - March 31, 2014, 10:21 AM

catdander
Posts:

Dear Tom,

I'm so sorry to know your Joan has passed. I hope you find comfort in knowing you made sure the best treatments were given against this awful disease. I can't help but believe Joan's spirit was lifted by your care. She and you have made an impact on me during your time here on Grace, it may be the life I imagined for the two of you from your picture. I'll keep you both in my heart.

Peace and Light,
Janine

Previous PostNext Post