Home Forums Melanoma Diagnosis: Stage IV When The Pros Disagree

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  • #20703
    buffcody
    Participant

    I thought the last time I posted that I knew what the folks at U. of M. had seen in my brain, two agreed upon melanoma mets that would be removed by radiation. Over the last 2 days, I realize that what I thought I knew I didn’t and the team there is not sure either. The one thing everyone seems to be sure about is that a very small met in the left frontal lobe just appeared on the last of 3 scans and needs to be removed. There is also a pineal cyst near my ear appearing on all 3 scans that doesn’t need to removed. But there are two and not one other thing up there, and that’s where the fun starts. The one near the splenium of my corpus callosum may not even be a tumor and has not changed at all through the 3 MRIs. So apparently this is off the radar, not, as I thought when I made my last post, the object of the team’s current attention. What has occupied them is something that did not show up on the first MRI, maybe because of different equipment capabilities from Kalamazoo (first MRI) to Ann Arbor (2nd and 3rd MRIs). It’s along the olfactory groove, an unlikely place, the onco radiologist thinks, for a mel met. Whether it has actually increased in size in the two months between scans is in itself a matter of debate. Bottom line, the radiation doctor feels it is not a mel met, the neurosurgeon does, and my oncologist, I think, leans more towards “yes” than “no.”

    U. of M. has a tumor board that meets every Friday at 7 a.m. The radiation oncologist has put my case on this week’s agenda. My three docs and others from throughout the cancer center will slug it out then. Where the board decision may play a difference in my treatmet is whether the move towards Ipi will be made now as I reported or, if the decision is that there is only one small one, whether there might be more watch and wait.

    The board decision may alternatively determine whether Ipi will be given next week and the removal of both take place on November 16 or so after two doses of Ipi or the oen tumor will be removed on November 1 followed by Ipi within a few days. It seems that the determination of the presence of two tumors would, in the most recent protocol at U. of M. lead to the immediate application of Ipi, while the determination there was one would lead to its immediate removal with Ipi to follow (If Ipi would then be given at all as I mentioned above).

    My attitude at this point is actually gratitude that this whole thing is being decided by a team process, and I will be happy to accept whatever decision the team makes on Friday. After all, I sure don’t have any higher wisdom in determining whether something is or is not a met and how one should deal with the sequencing of Ipi and removal. The radiation oncologist is, of course, one smart and thorough cookie, but she is also humble enough to have her own opinion but want to validate it or not through a group decision. She’s the one pushing for a tumor board decision to get the best minds and eyes of the university medical community making a joint decision. Wish they’d invite me to the session, but I have had the chance to meet some of the main players.

    Hope I haven’t bored you, but it does give an inside glimpse of the sometime difficulties of these life and death decisions. Anyone been through this kind of thing before? I’m almost sure some of you have.

    Frank

    #57093
    Catherine Poole
    Keymaster

    Frank,

    Sorry you have to go through all of this but happy to hear that you will be getting the opinion of more than one on this. I would think IPI would be a good idea as it is an immunotherapy, not terribly harsh side affects and it may help stave off the possibility of micromets. Using it is as an adjuvant therapy whether or not your brain mets are existent might be a good idea. I hope they come to a good decision for you and you will be in our thoughts here!

    #57094
    Anonymous
    Guest

    Frank:

    The fact that you have a bunch of highly skilled and experienced doctors reviewing you case has got to be a good thing, though I can certainly understand feeling a bit helpless here. Who do I trust? I’m glad they’re doing a tumor board and I’m sure they’ll come to an excellent conclusion.

    However, I’ve learned that we need to state clearly what we want and our prefered course of treatment. They work for us.

    Personnally, I’d challenge them a bit. Something like, “Unless you have really good medical and technical reasons not to, I’d like to start the IPI immediately.”

    Melanoma can be an aggressive cancer and needs to be treated aggressively, which your team is accutely aware of. IPI is available now, is an immunotherapy, and its systemic affect can and does cross into the brain and may well help take care of micromets to Catherine’s point.

    From previous research into trials combining IPI and radiation, one good approach is to do the radiation after the first couple of IPI infusions. As I understand it, the radiation does not kill the entire tumor instantly but as it dies off, antigens are released which signal the immune system, which has been primed by the IPI. This seems to line up with the “current protocol”.

    But be comforted by the fact that while ‘you’re having your head examined” ;) , they care deeply and are taking a real good long look inside.

    Jeff

    #57095
    buffcody
    Participant

    Jeff,

    That was a most valuable post you made. It helped me understand better than I have so far why the doctor would want to do Ipi first. I may have written as if this would definitely not happen if they decide there is only one tumor. That’s probably further than I have reallly heard clearly. I’m patching things together as I go along and talk with the three doctors most intimately involved with my care with some lack of precision, I’m sure. So maybe with even one definitive and tackled, there still may be two ipi infusions as you suggest before the radiation. I’ll find out all this on Friday. Another 3 and a half hour round trip drive to Ann Arbor to get the plan from my chief oncologist, Dr. Christopher Lao, after the Tumor Board meeting.

    #57096
    buffcody
    Participant

    And things are getting even “peculiarer”! The tumor board met yesterday at 7. They agreed with the radiation oncologist. The thing we have been watching since August is not a melanoma met. The new one is. But they added on. Someone on the board found a little white spot that he and then the whole board agreed was melanoma met number two. This one had never been seen by any of the folks who looked at the scans prior to yesterday morning. Because of a research study I signed up for earlier this week, another brain MRI was done at 10 yesterday morning. At 11 I met with the radiologial onc and her resident who showed me that this newest of the new had showed up more clearly, though not much larger, on this MRI. So verdict is: everything that had been suspect on all the earlier MRIs: June and August that were suspected of being melanoma mets were not. These new two which first showed up were, but they were almost invisible to all but the most trained eye. Her verdict: get them zapped and watch and wait.

    I saw my clinical oncologist early yesterday afternoon. His verdict. Better course is to begin ipi next week, get them zapped after the second infusion. My call? My call was to go with his advice rather than that of the radiation onc. If one of you readers has a different opinion, I would be interested to hear it and why. I do know the risks of Yervoy. But I also know that metastatic melanoma is metastatic and that showing up in the brain is not a good sign, even if it is nowhere else in the body based on the PET scan earlier this month.

    But I am obviously learning something almost every day. That can even be a little macabre fun! Have a swim meet tomorrow. And my onc told me to keep swimming through the Yervoy. Just stay close to home.

    Frank

    #57097
    Catherine Poole
    Keymaster

    My personal opinion would be to get the mets zapped and then get the the IPI going, or you could do both nearly at the same time. I would want those mets taken care of at a small size asap. IPI hasn’t been shown to do much for brain mets and has a 15% response rate for melanoma. I would take the radiation oncologists advice. But honestly, why not do them both nearly at the same time and satisfy both opinions?

    #57098
    buffcody
    Participant

    Jeff B, earlier this week, posted the following: From previous research into trials combining IPI and radiation, one good approach is to do the radiation after the first couple of IPI infusions. As I understand it, the radiation does not kill the entire tumor instantly but as it dies off, antigens are released which signal the immune system, which has been primed by the IPI. This seems to line up with the “current protocol”.

    My oncologist agrees with what he says. That’s why IPI first. But I believe the stereotactic will occur very shortly after the second infusion, so within three weeks and a couple days probably. The fact that the tumors are as small as they are gives me a little more buy time I think.

    The radiation oncologist with the opinion that I should not even bother with IPI at this point had not had her conversation with my clinical oncologist when I saw him on Friday, the same day all the stuff was going on. So maybe there will be further modification.

    #57099
    Catherine Poole
    Keymaster

    What Jeff is referring to is the published study of one or two patients who had some synergy with radiation and Yervoy. And the one patient I read about had lung mets. Typically your brain has a barrier that prevents anti cancer agents from getting to the mets, so radiation is the optimal therapy to kill brain mets. Here is the study I read:

    http://www.bloomberg.com/news/2012-03-07/radiation-blast-may-turbocharge-bristol-myers-melanoma-drug-report-shows.html

    Keep in mind that IPI (Yervoy) takes a long time to take affect. Getting the brain mets zapped asap is a priority in melanoma treatment. Hope your swim meet goes really well for you! And you can always give the doc at Sloan a call and get his opinion too.

    #57100
    Anonymous
    Guest

    Combining radiation and IPI seems to be getting increasing attention with a desire to collect data via clinical trials. For example:

    One looking specifically at brain mets:

    http://clinicaltrials.gov/ct2/show/NCT01703507?term=Radiation+and+Ipilimumab&rank=2

    And several others:

    One of the original ones:

    http://clinicaltrials.gov/ct2/show/NCT01449279?term=Radiation+and+Ipilimumab&rank=3

    And a new one:

    http://clinicaltrials.gov/ct2/show/NCT01689974?term=Radiation+and+Ipilimumab&rank=1

    So the concept of combining the two treatments seems to be getting accelerated attention. That makes sense as they are two very different pathways to the tumors with radiation being “sniper fire” for individual tumors and the IPI being the “ground assult” against the entire disease (The researchers, God bless them, are just plain hot on trying combined therapies now that they have a suite of tools to use against this disease).

    To me, it seems starting the IPI now makes a LOT of sense and is consistent with the conduct of the trials. I also really, really agree with Catherine to be agressive with the brain mets and do the radiation now, which is also consistent with at least one of the trials.

    Also, consider this concerning timing of the two: You can start the IPI tomorrow. If you go with stereotactic, it will take the radiation guys about a week to do their planning, trials and calibration plus they may want to start you on a mild anti-seizure medication a few days before the treatment. It will take only one session to zap those small mets (and they are very, very, small). The radiation team will want to see the results of their handy work about 30 days out from the treatment. By that time you would have had your second IPI and coming up on the third. So if they see anthing new (and I pray they won’t) there would be a second treatment round sometime between the second and third round of IPI infusions, which is consistent with one of the doctors recommendations. So to me, starting the IPI now and doing the radiation ASAP as well makes a whole lot of sense.

    But, of course, talk it over with your team. Again, I’m really happy you have a team paying a lot of attention to you..and actually agruing over you. It may be confusing to you (and perhaps a bit amusing) but you’re fortunate to such “problems”. ;)

    I hope I’ve not confused you or anyone else here.

    Jeff

    #57101
    Shirley Z
    Participant

    Hi Frank,

    Just wanted you to know I was thinking of you. Hoping whatever the final treatment decision is will bring great results for you.

    You’re in my prayers.

    Shirley Z

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