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January 29, 2015 at 11:40 pm #22339
I was in for brain MRI and body CT yesterday with a follow up conference about results with my oncologist, Dr. Chris Lao. The MRI was clean. A lesion we have been watching in the area of the pancreas and duodenum first on Pet now Pelvis CT has been getting larger over the last year, now 3.2 cm. by 2.6 cm. approximately. Lao thinks it is likely that it is a melanoma metastasis but is far from certain. Next step will be an endoscopy of the area very soon. The hope is that this will allow a biopsy of the tissue. If not, there are other possibilities for a biopsy, but Lao thinks that we might try using a braf inhibitor and Mek at that point to see if they will shrink the lesion. If they do, it would be a sign that it is metastatic melanoma. On the other hand, if they don’t shrink it, there seem to be three possibilities as I see it. One, is that I am not responsive to the inhibitor. That might be more likely with me because I do not have a garden variety Braf mutation but a rare one, which really does not have much history of either success or failure. It’s that rare. Or it might be primary pancreatic cancer. Or it might be breast cancer metastasis, a cancer I had in 2003. Not since. It is rare to have metastases from the breast or melanoma show up in the pancreas so I read. Unless the body is bearing up under the weight of many metastases. The last metastasis that showed up on me was almost two years ago, and the scans I had yesterday showed nothing new.
My oncologist who sees a lot of patients has only had one whose melanoma has metastasized to the pancreas, and I don’t believe he treats primary pancreatic cancer. But in the University of Michigan health center there are many with experience with primary. The gastroenterologist whom I will be seeing has coauthored an article recently on breast cancer metastatic to the pancreas. I’m glad he will be conducting the first attempt at biopsy. So I feel for now that I am in the right place. My onc is also thinking anti-PD 1 down the road shortly but wants a better idea of what we are dealing with before starting that. There is also some question as to whether I would have to have anti-Braf therapy before beginning anti_PD1. I have had ipi and a recurrence of any kind proves failure of that therapy However neither he nor I believe the Braf inhibitor requirement pre Anti PD1 will apply to me because of the rare Braf mutation I have.
So that’s where things stand. If anyone has experience with metastasis to the pancreas or some other insight as I move forward, I will certainly appreciate it.
FrankJanuary 30, 2015 at 1:02 pm #66223
Can they surgically remove this tumor? Seems like a good idea and then you would know its pathology as well. PD1 is used for a variety of cancers now and I wouldn’t hesitate to proceed. Your doctor can prescribe it and it would seem logical that your BRAF status would not be in question. Has your doctor discussed surgery?January 30, 2015 at 3:18 pm #66224
We discussed surgery. It is a very difficult surgery it seems that he thinks I would like to avoid as he would unless it is absolutely needed. The gastroenterologist that I am seeing Tuesday will probably know more about the surgical possibilities though and my oncologist does not claim expertise in this department. The main reason for holding off for now on the PD-1 is that if the BRAF looks like it will be necessary for diagnostic purposes in the case a biopsy cannot be done without major problems it would be better to do so for a short while. If this turns out to be melanoma then he would immediately start the anti-PD1. Makes sense right now to me.January 30, 2015 at 11:29 pm #66225NikiParticipant Buffcody,
I too have an oddball BRAF mutation. MEK worked for me. It dropped a tumor in my lung from 9 cm down to 5 cm in 2 months. I did end up having the lung lobe surgically removed, once the tumor was smaller, because melanoma cells will eventually find a “work around” for inhibitor medications. I am on PD-1 now, and fortunately, seem to be a responder. I hate to phrase it that I hope your pancreas lesion is melanoma… but that may be the more preferred diagnosis, versus having to deal with treatment for a secondary cancer as well.
On a side note… my early CT’s were showing a “possible cyst” on the tip of the pancreas, which has since disappeared after treatment with MEK and PD-1. It may indeed have been a cyst that resolved on its own…. or it may have been metastasis. I guess we’ll never be certain.
By the way… the MEK works very rapidly if your strange mutation will respond to it. My doctor tested it on some of my resected cells in his lab, so we knew I was going to get good results with it.January 31, 2015 at 12:42 pm #66226
Your response and background on your own situation was most helpful. I had heard some time ago from Dr. Flarhety one of the medical advisers here that with my BRAF mutation that MEK should be focused on. Good reminder. I also want to talk to my oncologist about any resected tumor that would still be available to pre-test it on.
I totally understand your wish that this turns out to be melanoma rather than another type of cancer. Of course, ideally it will be benign, and I will know that before undertaking another therapy. I am more confident as I have read further about biopsying the area that this would be quite possible without invasive surgery. I will know a lot more when I see the gastroenterologist on Tuesday, the one who will be doing the initial attempt of the biopsy.
I plan to be seeing my oncologist soon and will be bringing up ideas garnered from Catherine’s earlier post and yours as well. That’s one of the reasons that this forum is so helpful to us folks Thank you.
FrankFebruary 4, 2015 at 12:07 pm #66227
I’m having an endoscopic ultrasonography with fine needle aspiration today (whew! that’s a mouthful) at U. of M. today. The doctor who is doing it is a scholar in the “field” as well as a very nice fellow to work with. When I mentioned the word “surgery,” he quickly had a concerned look on his face, explaining that the operation would be a very difficult one, especially for a person my age (74), about a 4% mortality rate and a 33% morbidity rate on average. He hoped that I might have another treatment that would be more tolerable (that’s my oncologist and my call after the doctor today does his diagnosing along with the pathologist). One problem that he warned me about is that his results may not prove conclusive if they are negative. It seems a biopsy done in this way could come back negative, and there could still be cancer there. Despite the best of technology and medical expertise, another factor is that a good biopsy is still hard to do in this complicated location between or in the duodenum and pancreas. Fortunately, I am asymptomatic. That means it is early in the growth, whatever it is. In his opinion it could be either a metastasis of the melanoma or of the breast cancer I had earlier. More likely the first. He would find it amazing if it turned out to be a new primary to this site but not impossible. Just defying all odds. And he is a seasoned expert in this area of the anatomy!
I’m not sure how soon I will get the results and bring them back to my oncologist to decide on next steps, which there will be for sure. One of the interesting sidelights of my conversation with the new doctor is that listening to my whole case and family history, he did not dismiss my offbeat theory that my original appearance of melanoma goes all the way back to 1956 when I had a lymphendectomy to remove suspicious and very swollen lymph nodes in my right axial area. Both of us believe that the date indicated the primitive state of pathology that would have been used, especially as without an indication of a primary no one then would have been looking for melanoma. No cancer was found, though it was expected to be Hodgkin’s and tested for that. I’ll never know the answer that question of melanoma long ago this side of the grave, but since my current melanoma showed up for the first time in the lung in 2012 and no primary was ever found, there is some mystery about that leads to this personal suspicion. Doesn’t really matter what the unknown answer to my question is. But he is prone to see this as more than far out speculation because of my family history of melanoma, breast, and pancreatic cancer and his knowledge of the history of pathology.
I’ll post soon when I know more about the results of today’s procedure.
FrankFebruary 4, 2015 at 12:19 pm #66228
Wow Frank, you are a medical marvel. I don’t think this doctor knows that you aren’t the typical 74 year old and your great condition from swimming and terrific mindset can get you through just about anything. It is frustrating that we don’t have better ways to biopsy things like this. We will all be keeping you in our thoughts as you go through this procedure and hope for the best possible outcome. Thanks for sharing with us.February 4, 2015 at 11:04 pm #66229 The endocrinologist stopped by when I was in the recovery room recovering from the procedure. His verdict is metasatic melanoma. I”ll be able to look at the pathological report sometime soon and will be setting up an appointment with my oncologist ASAP. My surmise right now is that I will be staring on anti-PD 1 almost immediately. As before, I will be keeping you informed of future developments and will have to start re-reading some of the anti Pd 1 posts as well as asking a few questions of the group. It’s easy to skim if you have not undergone something yourself. The best news is that the tumor is a bit smaller than I thought before the procedure and that is definitely duodenal and not pancreatic. At least I think the second point is good news too. I won’t yet give up on asking more questions about surgery.
FrankFebruary 5, 2015 at 1:46 am #66230AnonymousGuest
I’m thinking of you Frank.
Any chance to zap it with radiation?
JeffFebruary 5, 2015 at 1:03 pm #66231
That is better news than the other possibilities. I still might question surgery but starting on Keytruda right away is a good idea. For most, it has few side effects and definitely less than IPI. Thanks for letting us know what was happening and knowing is always better to get a plan in place.
I am uncertain whether radiation would be an option but having a multi-displinary team always gives you the experts in all fields. Wouldn’t hurt to ask.February 11, 2015 at 11:05 am #66232
I talked to my oncologist yesterday, and he offered 3 possible paths–radiation, BRAF with or withoug Mekenist, and anti PD-1. None would necessarily exclude the others. His recommendation, though he always frames this as something for us to discuss rather than a decision, is to start with radiation. He thinks it is possible that it will shrink the tumor enough, perhaps even enough to look at surgery as a possibility, though that may be me talking more than him. He is rather negative towards multiple agents in the BRAF approach partly from his own experience. I am a bit dubious about the reason for BRAF at all. My tumor load is not large, and time does not seem at this point to be a critical factor as the tumor is single and rather small. It is growing, though, and he warned me, though nothing of the sort has shown up so far, that symptoms may not be all that far down the path. I should be hearing from the radiation department today or tomorrow and making an appointment to set up a schedule. Though there is a good cancer facility within walking distance from me that I went to when I had breast cancer, my sense is that it would be better to take the hour and forty five minute one way commute to Ann Arbor to do the radiation with the oncology team for better communication and better radiation expertise. Any thoughts on that decision? Thank you for all your support!February 11, 2015 at 1:03 pm #66233 Frank,
I think you have to be very careful with radiation in the area of the body and how it may affect quality of life (eating) etc. So is he saying it is too big for surgery? Is Proton therapy a possibility? I would get started on the PD1 asap and you can add radiation to that if desired. I agree the MEK inhibitor is more of a long shot from what we’ve seen in trials. Hope this helps..February 11, 2015 at 8:54 pm #66234AnonymousGuest
Sorry you have to go at it again Frank. But you seem to have a good and thoughtful team behind you.
I agree with Catherine to start the PD-1. It could, on its own, shrink the tumor enough to allow for surgery but it’s also immuno-systemic (did I just make up a word?) and will help go after anything else that can’t be seen.
But, if it can be done safely, combining the PD1
with radiation, even if you can only zap part of the tumor, may have further advantages in stimulating the immune system, just like when you earlier combined the radiation and IPI on your brain mets.
Something to consider and I hope this helps Frank.
JeffFebruary 18, 2015 at 11:32 pm #66235
Met with the radiologist and his resident today. They are not enthused about my doing systemic along with the radiology because radiation of this sort can have major side effects as can anti-PD 1, and they are concerned about the possible negative consequences of both together. I will confer with my oncologist on this, though, when I saw him last, he did not suggest simultaneous treatment with the two modalities unlike when we did that with ipi and SRS. The radiologist and I conferred about surgery, and he did not recommend it, as the gastroenterologist I had seen earlier also did not. The radiologist admitted gastro surgery is not his field, but he did have major misgivings for a variety of reasons centering around the difficulty of the operation. He sees the radiation as “prophylactic palliative,” not curative–to ward off the intestinal symptoms that he sees coming from this tumor if it is not reduced in size. He feels the slowness of growth and limited extent of my melanoma throughout bodes well for a longer life especially with the addition of systemic therapy following the radiation. I did explore proton beam radiation with the two of them. They both agreed that there was no approach to the tumor through proton beam that would be safe with the amount of radiation that will be used, double the usual dosage, and especially the delicate mode that must be used to avoid damaging very essential organs. I will be measured for the radiation tomorrow, and it will begin next week. 5 radiations-10 days.
FrankFebruary 19, 2015 at 12:59 pm #66236
You have the option of a second opinion at Sloan Kettering correct? In my opinion, this is a good time to use that connection and see what their experts suggest. They have pioneered the immunotherapies and did one of the studies on the “abscopal” effect of radiation and systemic therapy. PD1, of all of the melanoma therapies, has few toxicities. If you need our assistance to get to Sloan, travel, etc. please let me know. Happy to help!
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