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October 22, 2014 at 9:07 pm #22214
Hi there, about two months ago I went to the NIH and was hopeful to start on the TIL therapy. I did have a surgery there and they did start growing my cells which is a key part of the therapy. I just heard that my cells did in fact grow and they are frozen and ready when I’m able to start the therapy.
Unfortunately when I was there my doctors at the NIH said I was in too bad of shape to go through the TIL therapy. For the last few months I’ve had a huge tumor (about grapefruit size) in my groin. This has caused me great pain and also left me unable to walk. I can limp a bit, but it’s extremely hard to get around. So the NIH doctors told me to go home and start on chemo/radiation and hopefully that will shrink the tumor, reduce my pain medication, and get me moving around better. Plus I needed to put on some weight.
So, we had a fine plan and I was ok with it. In the last few weeks I have done just that, I have now done two rounds of chemo and I have prepared for radiation to the groin tumor. I’ve felt good, eating well, and even could feel some small tumors in my back were shrinking. However, the beast of a tumor in my groin were not shrinking.
I had simulation for radiation yesterday and my doctor was basically telling me that the radiation will not shrink this tumor. It may make the chemo more sensitive to the tumor and then shrinking. Plus there are some dangerous risks in this area – fertility, lowering testosterone, and reducing bone marrow. I feel like now I’m in a tight spot. Has anybody out there having direct radiation to a tumor? Not to brain. But direct radiation to the body?
Lately I’ve been feeling very good on the chemo- my appetite is good, reduced pain meds, and even my LDH was 256 last time for my second round. I had a scan yesterday that shrunk my pelvis tumor a bit but my main tumor did not shrunk at all, in fact was slightly larger.
Right now I’m not sure what options are out there. I’ve already done Ipi, BRAF drugs Zelboraf and Taf/MEK, and recently trial Anti-PD1 Nivolumab. Plus I need to shrink this beast tumor before I get back to the NIH. I’m also opened if there was another treatment out there that I could switch to.
Well, if anybody has any thoughts let me know. I’m just not feeling comfortable with chemo and radiation.
ShaneOctober 22, 2014 at 9:25 pm #65724MathewRParticipant
Shane, since you’re brainstorming–it seems to me from other posts that MDA has less stringent requirements for their TIL program (e.g., why is it necessary to be able to walk (other than to the bathroom) while doing TIL?). Assuming you meet MDA’s requirements, would the NIH be able to (safely) ship the cells to MDA?October 23, 2014 at 12:44 am #65725AnonymousGuest Shane:
Good lead on MDA.
Also, direct injection of IL2 into tumors has in many cases been shown to shrink bulky tumors rather dramatically. The very thing that makes IL2 so toxic when taken at system level for your entire body, that is capillary leakage, is used to disrupt the tumor cells and the blood supply to the tumor. There were a bunch of tests done, I believe 10-15 or so years ago, where IL2 was directly injected into multiple melanoma tumors in the hope that as they died off, the antigens produced would set off a systemic immune response. While the shrinkage rate of the tumors was pronounced, it did not set off a systemic immune response. But if you’re sharp shooting tumors, this may be an option. As I recall, the amount of IL2 for “intra-tumor injection” was so small compared to that of the traditional whole body IL2 treatment and so concentrated to a specific area that it could be done out-patient. It also worked quickly and was comparatively very cheap. So if you can get a needle into the tumor, this might be a viable option if your oncologist is willing to give it a shot. He/she will certainly have access to the IL2 and may want to consult with the NIH on it too.
Just a shot but it might be worth a serious investigation.
JeffOctober 23, 2014 at 2:27 am #65726
Hi thanks for the quick responses. As far as shipping cells or switching to MDA, I’m almost positive that can not be done. As far as going through the TIL, at this point I would be doing this at NIH. Also, they are the pioneers of this and I wanted tomdo this at NIH. I’m halfway through there as well. Today I contacted my contact at MDA and they basically were not willing to mess around with that. They also told me the plan I’m on is what they would recommend too: chemo/radiation. However I haven’t seen to my doctor at MDA in a while. I’m current,y being treated at Univ of Chicago. BTW, if anybody know what happened to Dr. Papa at MD Anderson? He was I consulted with many times at MDA and who took care of me when I had my brain surgery there. Since he fairly abruptly left I am not sure who my doctor there will be. Just curious?
As for as the IL2 injections did you have these? Or have you heard of anybody else who has this? I’ve looked online for this but rarely find info. Also none of my doctors have ever mentioned something like this? I saw this once in a trial but I need this more of a outpatient or how you spoke of this. I can’t get stuck in a trial because I need to try to get back to the TIL or other systemic treatment because I do have other tumors.
ShaneOctober 23, 2014 at 2:53 am #65727RJoeyBParticipant
A handful of thoughts… when I did TIL at NIH, I ended up having to delay between cell harvest and infusion because of a similar issue. I had a bone met in my proximal humerus that as we got closer to being ready to infuse had grown to the point where there was concern that it wouldn’t take much for it to fracture in a fall or even perhaps rolling on it awkwardly in my sleep. The danger was that when they administer the non-myeloablative chemotherapy regimen prior to cell infusion to wipe out the immune system, a fracture would be so much more complicated given the risk for infection (they don’t even let you shave with an electric razor for two weeks for fear of a small cut). So while the large nodal tumor doesn’t necessarily pose a direct fracture risk, perhaps the compromised walk is of concern to them? Still, I would think they could work with it. During the IL-2 phase of treatment post cell infusion, they administer Lasix to take off the water retention (I gained and lost 25 pounds of fluid in 6 days), so was out of the bed to the bathroom frequently, but that could be handled with a bedside urinal or catheter. And come to think of it, during the first two days of chemotherapy (the cyclophosphamide), they give Lasix and insist on a certain volume of urine output every two hours for 48 hours straight, because the cyclophosphamide can damage the bladder. And in that part, I had to use a urinal to measure output.
Have you asked NIH directly why they won’t give the cells with the groin tumor present, or at its current size? And is that tumor unresectable? Could they remove it, allow you to heal, and then move on to the cell infusion phase? (Out of curiosity, who is your attending physician on rotation there now?)
I don’t know if MDA and NIH would transfer harvested and grown cells, again worth the question. Another approach might be for MDA to use the tumor in question right now for a separate harvest for their own use. They are offering some patients in a trial the opportunity to harvest a tumor now and “bank” it for potential future use, even if they’re in the middle of another treatment currently.
In addition to intralesional IL-2, there are some similar injectable and intralesional approaches. There is an “electroporation” technique that uses electrical pulses to open up cell membranes allowing the IL-2 to more readily penetrate tumor cells… search for “OncoSec ImmunoPulse”. There are other injectable agents, too. Provectus PV-10 is one. I’ve read about it and am not sure what to think, because it seems like they’ve been reporting on the same Phase Ii trial results for several years without starting a new Phase III trial. They reported some results in Europe recently, but I’m not sure how new they are. Regardless, they say a Phase III trial will be opening soon. And there is Amgen’s “T-Vec” or “talimogene laherparepvec”, which is an injectable virus that is showing success with melanoma. What these all have in common is that they’re injectable into specific tumors.
Finally, as you describe it, I don’t think this is an option for something in the groin, because it’s too high up, but there is isolated limb perfusion (ILP), where they can deliver higher doses of chemotherapy to a specific limb by essentially putting it on a temporary bypass while the chemotherapy is infused. Again, the groin may be to high up and ILP may be for lesions slightly further down an arm or leg, but worth asking about to be sure.
I’ve had radiation to brain (SRS CyberKnife) and non-brain with mixed success. Four different times to three of the four “long bones” of my leg. Two of the four responded and are essentially dead, one progressed soon after finishing radiation and required surgery to excise (and fill with bone cement) about three months later, and another was stable for almost three years before starting to progress and also needing a similar surgery (although 90% of the excised tumor turned out to be dead). I also had a comparatively (to your groin tumor) small lung met radiated in February that very quickly responded and doesn’t show up on scans anymore. In my experience, radiation can play a role, but full disclosure, I haven’t had a tumor as large as the one you describe.
I hope that helps in some way. Will be keeping my eye out for updates from you and wishing you the best in the meantime.
JoeOctober 23, 2014 at 2:57 am #65728RJoeyBParticipant
Quick correction, the OncoSec ImmunoPulse electroporation uses IL-12 (another cytokine), not IL-2 — apologies for the confusion.October 23, 2014 at 4:29 am #65729mmmmParticipant I believe that Dr. Papadopoulos, MD Anderson, retired this fall.October 23, 2014 at 2:01 pm #65730AnonymousGuest Here is an “intratumoral” injection study done by NIH:
The very last sentence is the one that caught my eye for your situation.
And if you like science, graphs and charts (which I do):
Again, this caught my eye for your situation.
Overall, there seems to be a residual interest in IL2 in combination or sequenced with other immunotherapies which makes sense as IL2 is a T-cell growth factor.
JeffOctober 23, 2014 at 2:27 pm #65731Catherine PooleKeymaster
My two cents would be to maybe go back to taf/mek, or try the Merck Pd1 (Keytruda) it is allowed if you have had prior PD1 and both of these are prescription items. You might investigate proton therapy, there are a few centers in the U.S., I know there is one at UPENN, here’s a link to find a center and discuss whether that might be a better alternative: http://www.proton-therapy.org/howit.htm
Hope this helps and wishing that all proceeds well for you Shane.October 23, 2014 at 5:58 pm #65732PhillyRedParticipant
I know from several studies that I have worked on that anticancer treatments utilizing locally administered IL-2 (e.g., subcutaneously or intradermally) as a component of the anticancer teatment, have reported few or no specific IL-2 related toxicities, although, theoretically, one must be aware of the possibility of IL-2 toxicity. In contrast to the severe and widespread IL-2 associated adverse events observed with systemic IL-2 administration by intravenous infusion, locally administered IL-2 has mostly been associated with injection site reactions (swelling, redness, minor bleeding, heat, pain, and/or itching of the skin at the site of administration).October 25, 2014 at 7:25 am #65733 So this week was a tough, or I should say anxious week. I had radiation to the brain, opened up my brain, so many surgeries I can’t even count anymore, and multiple treatments I have done, but now radiation to my groin has make me nervous. Some of the risks I mentioned before are quite personal I guess. But after checking a lot of the information people provided here, and discussed with my family, I am going through the radiation. I want to stick to the plan (and to be honest all the doctors I spoke to suggested radiation and chemo) and don’t want to interrupt this plan. I want to get back on a more durable treatment as quickly as possible.
I appreciate all the info about IL2 and even IL12. I still, or did not have enough time to understanding these treatments. Seems to me there aren’t much of this going on. One of the key things in my case, I need to shrink this tumor quickly as possible and then get back to the NIH. I just don’t see how patients, at least stage 4 with other disease, can get involved with a trial that takes a long time. I’m looking for some type of treatment that injects into the tumor and then get back to your systemic treatment. I’m kind of wonder if something like this could take the place of radiation? Target at a specific tumor within a few weeks max, and then back to your chemo, immunotherapy, etc?
Catherine, I’m curious, are patients going back on BRAF drugs for a second round? I was on for 13 months successfully and now have been off for about 7 months now. I brought this up to my doctor before but he said it has been done, but rarely successful. Also, I did on a Nivolumab trial this year but could I get on Keytruda now? Really curious on that.
Thanks again for all the help and sharing info.
-ShaneOctober 25, 2014 at 12:01 pm #65734Catherine PooleKeymaster
Yes, there aren’t great numbers, but some folks get a response again after being off the braf/mek combo for a period of time. I thought Keytruda might be an option since you would qualify and it could elicit a different/better response than the other Pd1. We haven’t seen a trial comparing the two PD1s so we don’t know yet. Both aren’t sure things but not terribly toxic options that will do any harm. We are still finding out about these things.
Did you check out that Proton Therapy?
Direct injecting of different agents is still in trial. Most of these therapies are for subcutaneous lesions and claim a bystander effect. Our scientific board isn’t sold on them, but thinks in combination with other things, they might be a novel approach. If you’d like to email or talk directly, give me a call: 866-463-6663 or
email@example.com. Around this weekend even..
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