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July 15, 2012 at 2:08 am #20482
It’s been a long while since I posted – lots going on, melanoma-related and otherwise. To “refresh” memories, 3 of my tumors started growing rapidly last Fall after 20 months of a good response to Ipi, I then went on the Curetech CT-011 “anti-PD1” trial and failed, then did Ipi reinduction this Spring, along with radiation of the largest tumor (about 8 cms). Current result – the radiated tumor shrank considerably after the 25 sessions of low dose treatments, but the other 2 active tumors have continued growing, so I’m now going to get #2 radiated (in the hylar region – at the root of the lungs), and hold off on either radiating or surgically removing #3 (in my armpit).
While I was disappointed that the Ipi reinduction didn’t stop the 2 still growing tumors in their tracks, I have come to see that the real issue is that I don’t have any new tumors, or other newly growing ones. This either means the Ipi did help, or that my immune system is still working well in general. The other encouraging news that may be related to this is that my hemoglobin levels are suddenly normal again (14) after a year of low-grade anemia. Probably because of this, and also recovering from the radiation treatment, I feel healthier and more energetic than I have for a very long time – for over a year or longer.
The radiologist I’m dealing with (at Yale – begins in 10 days) says melanoma cells most often are particularly susceptible to higher-dosage radiation than other cancers, so I’m going to get only 5 sessions of relatively high dose radiation (rather than more sessions at lower dosages). He says this can sometimes activate the immune system more generally, which I’d love to see.
On a related issue, I’ve been in touch with people at Curetech, and they insist their trial is ongoing and that there have been some responses that are not at all trivial (or in their words, could not be simply considered partial responses). They say there was a misunderstanding about the trial suspension this past winter, which they say was not due to evaluation of results, but for bureaucratic reasons…. I would therefore love to hear from others if they know of anyone with positive CT-011 results.
JonathanJuly 15, 2012 at 11:45 am #55491Catherine PooleKeymaster
Good to hear from you Jonathan. As always, you are an inspiration to us all. As you know, I’m still chipping away at this PD1 issue for other patients as well. The trials are small and extremely restrictive. If an agent is shown to work for a disease that has few treatment options then it is imperitive it become available to as many patients as possible. I’m so happy to hear you have more energy and are enjoying the summer!July 16, 2012 at 6:14 pm #55492mainelaurieParticipant Jonathan,
I have been hoping you would post an update.
Is it right that you are considered a “mixed responder” when it comes to treatments? I have always had some things shrink while others grow on each treatment I have been on. I wondered how many others have had mixed responses to treatments?
Have you changed radiologists and that is why you are now doing high dose to second tumor? or is it based on where each of your tumors are located?
I am glad that you have not grown new tumors, always hard to get scan results without worrying. I am sure it was hard to hear you still had the three tumors but I am glad you have a plan of attack with the radiation.
It is so nice to hear you are feeling good, that is the important thing.
laurie from maineJuly 16, 2012 at 8:11 pm #55493patiParticipant
You are a winner that is who you are, no failures to speak ok as your immune system is doing great…with a little help from radio and surgery and ipi but still!!! but hey that is the only way we can get through right a little bit of everything and throw in some love and food and wine and….? Enjoy the summer it has been raining for over a month on and off in Brussels so…going for my 4th IPI + DC cycle friday, ready for another “chill and sweat” weekend ride….
PJuly 18, 2012 at 7:27 pm #55494Dick_KParticipant
Good to hear from you and that you are feeling healthier and more energetic.
DickJuly 18, 2012 at 11:39 pm #55495Mrs_RasParticipant
It’s great to hear you have more energy and your hemoglobin levels are back to normal.
Inquire with your radiation oncologist about the possibility of burns relating to the high dose radiation. No one warned my husband beforehand.
ValerieJuly 21, 2012 at 9:33 pm #55496
Hi, thanks for all the good vibes. I’ve been running around in locations without good web reception (does Philadelphia qualify for that Catherine??). Just feeling good, and enjoying the great weather (for a change).
About the change in radiation from low to high dose, that’s an “interesting” question. Frankly, I am pretty sure my oncologist wanted/assumed I’d get high dose treatment last time, but when I went to the radiology department, the person I saw (not my onc’s preferred choice, it turns out) said that because of the location (the tumor was big and invading my psoas muscle, and was quite close to my lower intestine) recommended low dose treatment, so as not to exacerbate diarrhea etc from Ipi. In fact, the treatment seems to have been quite satisfactory on that tumor – significant shrinkage, and no more leg pain or difficulties raising my leg (like putting on my pants).
This coming round, my oncologist made abundantly clear the radiologist he wanted treating me, and there’s apparently no issue about damaging nearby areas, strangely enough. This one is adjacent to the lungs (mostly air), so the only nearby structure that is possibly in danger is the esophagus. He said that he will have to wrestle a little with the insurance companies about doing the high dose treatment vs low dose (fancier technology, but essentially the same cost), but that he is very much in favor of it because of the reasons I mentioned in the first post.
So the short answer is that the change had to do both with the location and with the radiologist, I think.
JonathanJuly 21, 2012 at 10:08 pm #55497Catherine PooleKeymaster
No web reception in Philadelphia? Hmmm, we seem to have it just fine! Thanks for the explanation on your radiation therapy, as usual, you are quite educated about what is happening to you and knowledge is power! I think we are all breathing a sigh of relief of actually having temperatures below 90 and getting some much needed rain. Keep on enjoying yourself!July 22, 2012 at 9:32 pm #55498Shirley ZParticipant Hi Jonathan,
Happy to hear you are feeling well. You continue to amaze me with your courage and positive attitude.
You are one tough dude! My best wishes and prayers to you and your wife.
Shirley ZJuly 23, 2012 at 1:06 pm #55499mainelaurieParticipant
Thank you Jonathan for answering my radiation questions. I am glad the low dose worked well for you with no side effects and showing shrinkage thats wonderful! It is interesting that they can do high dose near lungs, truly amazing how precise they can be now.
Thank you for your information, I go weds to mass general to discuss my very large group of tumors on and around my collar bone. I hoped I could get mass generals opinon about low dose versus high dose for this area, my oncologist would prefer low because of possible nerve damage. Thank you!
I wish you all the best with your next round of radiation.
laurie from maineJuly 23, 2012 at 3:17 pm #55500
I understand that concern about nerve damage and radiation. That’s what they’re concerned about with the “other” growing tumor in my armpit, that will have to be dealt with after the chest (hylar) one (unless that just melts away…). Radiation in my axilla might damage nerves going into my arm permanently, but the surgeon apparently doesn’t like to operate on tumors unless he can leave the patient without growing tumors (hence doing the chest one first). And here I thought the armpit was a simple and harmless area to deal with…
Anyway, you’re certainly ought to get sound advice from the Mass General folks.
JonathanJuly 25, 2012 at 10:07 pm #55501bettinParticipant
great to hear from you- also, that the radiation is working. It did wonders to Peter’s tumors- despite med students being taught that melanoma is a radio-resistant tumor- after 3 days on radiation on his armpit they could no longer align him on to the grid. We still have no proper explanation for that except that the tumor had shrunk (which is what Peter had said the evening before and which we both had dismissed as wishful thinking)…..
SO I hope your tumors just melt away!!!
BettinaJuly 26, 2012 at 12:08 am #55502
Thanks for that – I can only guess about the radiation-resistant reputation of melanoma, but my best guess is that melanoma needs considerably higher dosage to be affected. I am somewhat confused about the dosages involved however, because I thought I was told I was getting 3,000 Grays in total – this is impossible, so they were likely telling me I was getting 3,000 centi-Grays (the equivalent of 30 Grays – just learning this stuff). If so, that’s rather in line with what I see for treatments of other cancers on line, so I’m confused – but I’ll ask tomorrow when I get my 2nd dose.
But it’s very helpful to hear about Peter’s experience – I suppose they’re worried about zapping my brachial plexus down the line, but my tumor has been impossible to palpate in that region for some reason.
All the best,
JonathanJuly 26, 2012 at 1:16 am #55503StevenParticipant
Hi Jonathan – It is great to hear from you and I’m so glad that you are feeling better.
StevenJuly 26, 2012 at 11:45 pm #55504dkmcParticipant
Jonathan – we have been waiting to hear your news concerning reinduction with ipi. Since Don is a complete responder & you had such a long response(not long enough though!) I very much wished for another complete response for you. But you are right – no new tumors, no rapid growth of tumors – these are all good signs. Don almost did not do radiation in the beginning(3 years ago) because the radiologist wanted to be very aggressive which would have meant radiation over his throat & possible loss of taste, difficulty swallowing. It would also have meant lower doses spread out over 20+ treatments. Can’t do high dose over larynx. After a great discussion with radiation oncologist Don ok’d radiation over main area of surgey on neck – 5 high dose treatments. He has a “wooden” neck but that is it & we were prepared for that. I think our words to the doctor were ‘now don’t let us do anything stupid but…” Please keep us in the loop…you will never know the hope your experiences have given us. Karen
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