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June 6, 2013 at 7:10 am #21342
The decision on where I go from here medically has not been nor is a smooth passage. There was supposed to have been a Tumor Board hearing at the University of Michigan on my case on Friday. It seemed to me that the main decision as presented to me last Wednesday by my oncologist was that he wanted its advice on was whether to radiate or operate. He was going to ASCO over the weekend but it was still going to be presented in his absence. I called Tuesday, as no one had contacted me from his office as to the next move. Almost 24 hours later, I called yesterday. His resident finally got back to me. Apologies. Tumor board presentation not made. Decision, same as previous Wednesday, watch and wait for 7 weeks for the one tumor that now she tells me is the only one “live” in my brain and now stable, the one that caused the seizure. That was not the way I had understood the “decision.” Somehow the three principals in the “department”, oncologist, radiologist, and neurosurgeon had consulted yesterday, and that was their decision. The neurosurgeon will not operate because it is my third tumor. He will operate on a first melanoma metastasis to the brain, not a third. So the option for action if one is ever taken would be radiation. I may be wrong, but it feels like they want to wait seven weeks to see if the load is small enough for another targeted SRS or maybe it will have multiplied enough that WBR would be the best bet. But that may be just me imagining. There is no doubt that she (the resident) is saying is that when things keep popping up the implication is they will still keep popping up, and you don’t add risky surgery, which all brain surgery is, to risky surgery. Though we talked about systemic last Wednesday, I am obviously not currently eligible for anti-PD-1 with a recent brain met and no other tumor found on the PET scan two weeks ago. The oncologist is not sure I would qualify for insurance payment for Yervoy, and I don’t think he would rush to the latter anyway. I am headed to U. of M., 100 miles away this morning, for another brain MRI, which I am only getting because I have been part of an almost year long clinical study on the use of more frequent brain MRIs. I’m happy to be going, most of all because I will be able to have a direct consult with the radiological surgeon, who will be more on top of everything than the resident and should be able to help me understand the decision she and the others reached without my paranoia taking over. The resident after hearing me out yesterday with my personal hesitations about the direction they are taking did, much to her credit, guarantee that the case would be brought to the tumor board tomorrow, so Dr. Tsien, the radiological surgery whom I have found excellent to deal with when I have, in addition to what she will tell me about decisions so far, should help guarantee that. She was the last of my team to bring my previous situation to the tumor board in October because of her disagreement with a previous MRI fiding, and they helped identify that one lesion thought to be a melanoma metastasis actually was not one and another, thought not to be a melanoma metastasis was. Time has proven the decision as to which two to radiate was correct. One has totally disappeared. The other one is visible but definitively residue and no longer tumor, so good things have happened over the last 8 months upstairs till this latest one. Despite the fact that life is changing with a driving prohibition and a hearty dose of steroids, it continues to be good and free of physical and psychic problems. I just sleep in shifts instead of straight.
FrankJune 6, 2013 at 10:26 am #61113gostanParticipant
Best of luck with today’s brain MRI. No doubt that the mind trips do almost as much a job on us as do the physical ones. Waiting for a course of action can be so difficult. As I read your story, I give you my best for hanging in there so solidly through all of these ups and downs.June 6, 2013 at 10:41 am #61114BrendanParticipant
Is the neurosurgeon’s position (to not operate on your third brain met) personal or is it standard procedure according to the hospital/department? Hopefully your case will be discussed at tumor board and you will have some more information. Steroids certainly do make sleep patterns interesting.
Good luck with today’s MRI.
BrendanJune 6, 2013 at 3:04 pm #61115kylezParticipant
So frustrating for you. That’s a tough boat to row in (watch and wait).
I don’t want come across like I think I’m an amateur neurosurgeon or oncologist. So I’ll just share my own history in this regard.
The tumor board at UCSF did recommend resecting tumors #2 and #3 for me as a double craniotomy. As part of that plan, shortly thereafter irradiating #2, #3, and the smaller #4, and #5. A wildcard for me is that I also had a systemic treatment lined up right after — IPI, for the first time for me. I have no idea if that was a factor or not in the tumor board’s decision.
I don’t remember if you’re BRAF positive, but I know you’ve done a course of IPI. Is there any options outside of clinical trials for any systemic therapy? Of any kind? Whether to sway the tumor board or simply to get another systemic treatment?
Since my tumor board was okay with resecting #2 and #3, and I heard of others who’ve gone past #3 in resections, then — not to drive you crazy — I’m not a neurosurgon or oncologist — didn’t get a sense of whether you wanted to pursue a second opinion on either the neurosurgery, oncology, or both fronts.
Wishing you well. Hang in there.
– KyleJune 7, 2013 at 1:34 am #61116
Dr. Tsien was waiting for me on the other side of the glass when I finished this morning’s MRI. She smiled broadly and said “I have very good news for you.” There is no new tumor. It was an over read that must have begun here in Kalamazoo and continued on at U. of M. There is no trace of it. What an amazing surprise after what I shared this morning. As for the two tumors radiated in December, there is some residue that is still present that “might” have been the source of the swelling that led to the seizure four weeks ago. But no one wants to touch it now, since touching it could cause more problems than good and it is definitely showing no sign of any malignant activity on the PET scan. Nothing else on the PET scan. I am definitively full body NED. There will be a tumor board review, but maybe they will concentrate more on why this was confused for weeks while it is so clear on this latest MRI. Can I express the joy in the Cody family tonight. Not adequately!!! Dr. Tsien feels I need no more scans for three months. We’ll see if the oncologist agrees or whether I will still have another brain MRI in seven weeks.June 7, 2013 at 4:34 am #61117kylezParticipant Frank, wow, that is a major reset/turnaround. Talk about phenomena. That’s got to be a great feeling for you!June 7, 2013 at 7:37 am #61118abdormaParticipant Talk about a roller coaster ride!!!! That is great news and I hope you and yours have a fabulous NED celebration this weekend!
To many more NED reports!
AnnJune 7, 2013 at 9:11 am #61119gostanParticipant
What a great False Positive happy day for you!June 7, 2013 at 11:12 am #61120BrendanParticipant Great news, Frank! Enjoy the celebration.
BrendanJune 7, 2013 at 1:58 pm #61121Catherine PooleKeymaster
Frank, please touch base with Sloan Kettering as they were following you too? I could have them read the scans as well. I have an uneasy feeling about the rollercoaster ride they’ve been giving you and another opinion never hurts! Glad you were able to get a swim in!June 7, 2013 at 6:28 pm #61122 Catherine,
Thanks for the tip. I’ll follow up on your suggestion. The tumor board at Michigan met with all my MRIs this morning going back to last summer and drew the same conclusion. Nothing new. No activity in whatever is visible old.June 7, 2013 at 7:43 pm #61123pastwinnerParticipant
This is wonderful news – I am so happy for you and your family!
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