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October 10, 2014 at 8:52 pm #22205
Was at the University of Michigan to see my “melanoma” team over the last week. They are not absolutely sure if the spot in my brain is a metastasis or not, but it seems past time to chance that it is a radiation effect. It is now over a centimeter and surrounded by swollen tissue. Both areas in the right frontal lobe are growing, so I will be having a craniotomy in the same spot I did 14 months ago to remove what is there. The neurosurgeon promises an easier operation than the first time since I still have the flap in my skull that was the entrance in 2013. What a deal!
It is also likely that the one plus centimeter something in my pancreas is a met, but it has grown very little over the past six months after its first appearance on a Pet scan, so that will be a back burner item until the brain is treated. I have a rare BRAF mutation, not the usual 600s, so the use of anti-BRAF drugs will be a bit of an experiment, but I may have an attempt at a combo of those, before moving to anti-PD 1. It was a possibility to try the former before the brain surgery, but my oncologist does not want to wait on the brain any longer since it is most likely a melanoma met that is growing a little more on each MRI.
I presume but don’t know that the surgery will be in a couple of weeks. More info for me on that Monday.
FrankOctober 10, 2014 at 10:28 pm #65590Celeste MorrisParticipant
Oh, Frank! So sorry that you are having to deal with that mess again! Glad your site is prepped and ready! You’re right…what a deal! I know you will do great and I’ll keep fingers and toes crossed that it is just necrotic tissue being crazy! Sounds like you have a good plan. Hang in there! CelesteOctober 11, 2014 at 12:13 am #65591 Frank, sorry to hear you’re still dealing with this. Sad to say our paths continue to be all too similar. My left side motor control symptoms continued to worsened a few weeks ago to the point where I couldn’t walk or do much of anything without assistance. Reintroduction of steroids has improved things a little so I’m somewhat functional again, but walking with a cane and struggling to use my left hand. I had my MRI about two weeks ago and not surprisingly, both the edema and area of “enhancement” on the scan at the site of the original tumor, craniotomy, and CyberKnife, looked worse than the July scan (after having improved from June to July). I saw the neurosurgeon on Monday and while everyone still thinks it’s more likely radiation effect/necrosis (“RN”), no one is confident enough to rule out tumor regrowth without further study. My regular 3-month full-body PET/CT is this Tuesday, and while PET often isn’t all that helpful with brain metastases in general, they hope a combination of it and the recent MRI will give them a little more information. So no decisions on what’s next for me until at least then.
But my intent isn’t to steal your thread with an update on my own stuff, more to offer some other insights based on the options that have been discussed with my doctors, based on your and my similar situations. First, both my neurosurgeon and radiation oncologist have mentioned “perfusion MRI” as a possible scan to help differentiate RN from tumor. Like any scan, it’s far from definitive in telling them apart, but shows blood flow (where tumors have more) and can sometimes assist in the determination. They may tell me after Tuesday that they want to perform this perfusion MRI as a next step, you might want to ask about it.
Second, both of the same doctors have also talked about recent studies (in the past 4-5 years) on the use of Avastin (bevacizumab) in the treatment of RN. The studies have been relatively small for this off-label use of Avastin, but have shown to be highly effective with RN — if you Google, “radiation necrosis bevacizumab,” you’ll find several of these studies. This isn’t using Avastin to treat melanoma (because it’s not effective, at least as a single agent, in treating melanoma metastases), but taking advantage of the anti-angiogenesis effects of the drug to treat the RN. Of course, if there is a strong belief that this is tumor, then it wouldn’t make sense. Avastin can increase the bleeding risk which is not what you want before, during, or after a craniotomy. But depending on what my upcoming scan(s) show, it may end up being an option, and I wonder if anyone at UM has offered it to you?
Finally, I’ve heard two different sides of the second craniotomy story. Not trying to sound macho, but I tend to have a little bit of a “been there, done that” attitude about a repeat craniotomy to the same area — it helps that the first one went so smoothly (as far as brain surgery can), but still makes my wife crazy because I got to “sleep” through it all. Then I’ve heard two opinions, one where I’m told that the risks to the area are known from the prior surgery, so a repeat should go similarly. But the neurosurgeon said that it can be a bigger challenge the second time around because, to put it bluntly (and these are my words, not the surgeon’s), it’s easier to cut and slice “fresh” brain tissue vs. tissue that’s been scarred by prior surgery and radiation. So again, maybe something worth asking. If opinion starts to change among my team of doctors after next week and they think this is more likely to be tumor, a repeat craniotomy could be on my agenda for the coming weeks, too. And even if it’s “just” RN, if it doesn’t resolve on its own or with treatment, a craniotomy may still be necessary. He just cautioned that when they toss around a phrase like “clean up” to describe the surgery, it may not be as simple as it sounds.
Continuing to root for you here Frank! You’re in my prayers and I’ll be on the lookout for an update here from you soon when you learn more… I’ll post a separate update of my own at some point soon, too.
JoeOctober 11, 2014 at 11:15 am #65592
You are most definitely not stealing my thread. I am sorry to hear about your difficulties. But I am also very much helped because of the similarities in our situations by the knowledge you have gained and its possible applicability to mine. Besides, I am sure other readers may find some assistance in our conversation.
My situation is different in a couple of significant respects. First, I am not as aware of the side effects of the brain lesion as you certainly are with the motor control problems on your left side. I have been on steroids for some time, which have helped, and they were increased after Wednesday. But my symptoms have been more fatigue, minor memory problems but probably more than simply age-related. and some headache suggestive of pressure from the edema.
Unlike your team, though ultimately not sure whether this is RN or melanoma, the opinion is that it is much more likely to be melanoma, though the problem was first spotted on an MRI some months ago precisely in the spot that Cyberknife had been used at its maximal dosage. So at that point and for a couple more months the surgeon thought necrosis not metastasis. The spot itself has grown from 5mm to 11mm over the course of a few months and is now showing a great deal more swelling outside of the spot.
The neurosurgeon requested insurance to cover a magnetic resonance spectroscopy to help in the diagnosis, but it was turned down by Medicare because it “was not medically necessary in this situation.” He may have also mentioned the possibility of an MRI infusion in speaking with me so I will bring the latter up with him again when I speak to him next week, but he was rather pessimistic when he first presented to me that these tests would really provide the exactitude that would answer the question without having to operate. All of my doctors are concerned about leaving what is up there for too much longer. The University of Michigan tumor board with me yesterday on my case apparently agrees.
I’ve also had two brain operations, the first one parallel to what I am waiting to be scheduled for. Then, too, there was some question of whether it was RN or a metastasis. It turned out to be RN. Then a blood burr drainage of both sides of the brain because of a fall during the recovery period from the first one. The total recovery without the fall (my bad!) would not have been particularly onerous. So I’m a somewhat confident “old brain” too.
I will pass on the word about Avastin. I had heard of the drug but not in the context of my problem. At the end of the day I think the the rather strong now shared belief that this is a metastasis will lead to the earliest possible move to the operating room.
FrankOctober 11, 2014 at 12:18 pm #65593Catherine PooleKeymaster
We’re getting to be old friends now! I remember our first conversation on the phone a year or so back. I was so impressed by your swimming ability! I’m really sorry you are going through all of this. My two cents from navigating others is to see if you can get the PD1 going now. If you are a responder, it will definitely help with the pancreas and possibly the brain issue. One patient I’ve been working with is in the brain mets PD1 trial at Yale and doing really well with his response, 60% reduction in disease in his lungs and his brain is now clear after dealing with many mets over time. And you are probably familiar with Jonathan. He started and continued the PD1 all through his surgery for abdominal mets. He too is now enjoying a good response and recovery. So that would be my opinion based on what others are experiencing. Not all folks respond, but many do and it is durable. Please let us know when you can how you are doing.October 11, 2014 at 2:04 pm #65594
It was actually 27 months ago that I was diagnosed at Stage IV and we had our first chat. Time flies when you’re having fun!! I haven’t swum in a meet in 15 months, but I’m back in the pool and working out (some). The steroids help.
I will talk to my oncologist about getting the PD-1 going pronto. I don’t think there will be any need for the BRAF treatment now as I will be getting the operation without the test aspect of the BRAF to see if it a tumor or not. I believe U. of M. is already using Keytruda for folks like me. Don’t hold me to that.
Very grateful for you and MIF. I’ll let you know how things go, when they go.
FrankOctober 11, 2014 at 5:14 pm #65595Catherine PooleKeymaster
Wow, it has been a long time. Glad to hear you are back in the water some, it is therapeutic for sure. As long as you’ve failed IPI and (your BRAF status is unclear?) you should be set to go with Keytruda. It has few side effects and I wouldn’t know of any reason why you couldn’t start pronto and have it during your recovery. I hope it helps and know that we’re all cheering you on!October 11, 2014 at 11:17 pm #65596 Frank,
I appreciate you sharing the thread
. I’m helped and learning from your experience, too, even as we’re both somewhat in the dark about the exact paths each of us will be following these next few weeks. One thing is for certain, and that’s the tricky nature of RN. In most ways, it comes with all the issues of tumor regrowth, but has the chance of sometimes resolving on its own. It makes for a very frustrating situation on two fronts: one, to not know for sure what it is, and two, if it is RN, to have made such good progress only to have this be the biggest bump in the road in such a long time.
I’m glad to hear the side effects you’re feeling are being somewhat helped by the steroid — the steroids themselves are so loaded with their own side effects that to not benefit in some way would be a shame. I have most of the common effects from dexamethasone: fatigue, appetite, “moon face”, sleeplessness, agitation, but they’ve undoubtedly helped with the edema and motor control. In considering Avastin, or eventual surgery, even if this turns out to be RN, there is a goal to avoid long-term steroid use, but I think they may try another “cycle” to give the RN more time to resolve.
I think I understand your explanation of why your doctors are tending towards melanoma growth vs. RN right now. For my past three MRIs, we’ve seen fluctuation: clean border around the cavity for over a year, then “enhancement” in the June scan, but in a consistent “halo” around the border (plus the edema), reduced enhancement and edema in July after six weeks on steroid, then a return of the edema and enhancement on last week’s scan, following the taper and discontinuation of the steroid. Both the edema and enhancement on the most recent scan were the largest and worst they’ve looked on any of the scans, but given my symptoms, I fully expected that’s what we’d see. The enhancement was still in a consistent halo, no specific “bulges” or uneven areas on the border. The neurosurgeon didn’t say this, but I’m hopeful this is more consistent with RN from an evenly irradiated tumor bed than new tumor growth — could very well be wishful thinking on my part. They have also said that there is a slight “swiss cheese” appearance in the area, which sounds terrible, but apparently can be more indicative of RN, too. Despite the symptomatic improvements and response of the edema with the steroid, that would come regardless of tumor or RN. So the bottom line is we don’t know right now, may know more on Tuesday, or may be in the exact same place by then.
Again, I’ll be on the lookout for an update as you learn more. And I’ll post something as we learn more this week, too.
JoeOctober 12, 2014 at 1:54 pm #65597AnonymousGuest
During Rachel’s treatment, both her melanoma and radiation oncologists were big fans of hyperbaric oxygen (HBOT) to treat/prevent RN in the brain, as well as speeding the healing process from WLEs and SNBs. Using HBOT as a main line or even adjuvant cancer treatment remains controversial but its use for RN prevention of the brain and as an aid in large wound healing is not. In fact, the increased concentration of O2 in the brain makes the radiation treatment that much more effective while at the same time protecting healthy brain tissue.
It may take a few weeks of treatment (20-30 sessions) and some insurance companies will cover it for RN and wound healing, but NOT as a cancer treatment.
Costs if done in a hospital setting are horrible (imagine that
🙄) but costs associated with stand alone facilities are reasonable and insurance may just go for it if your cancer team recommends it.
Something to check out.
JeffOctober 12, 2014 at 6:53 pm #65598
Thanks Jeff. I’ve read a little about HBOT and RN, but had the impression it had started to fall out of favor somewhat with RN. Regardless, I had it in my notes to ask about at my last appointment with the neurosurgeon and just somehow skipped over it, so am planning to at least inquire the next time we talk, sometime this week.
It sounds like for Frank, he and his doctors are proceeding down the path of treating this new activity as melanoma and not RN, so HBOT would not likely be applicable to him.
JoeOctober 14, 2014 at 9:52 am #65599
I have a physician friend, who is a specialist in HBOT, a treatment that Jeff references in his post that might be of use to people in similar situations to my own. After reading Jeff’s remarks I passed this thread on to him for his thoughts. He sent this back along with a final comment that he agreed that I should definitely have a biopsy before I even thought of pursuing hyperbaric oxygen treatments, if then.
We had one spectacular success with HBOT in an 18 yr old treated maximally with RT for an aggressive spinal cord tumor and Neuroimaging could not differentiate recurrent tumor from radio necrosis.
Steroids improved the paralysis at the expense of side effects and attempts at weaning the dose resulted in increasing weakness. 40 HBOT treatments given as a therapeutic trial over several months got her off steroids with near complete resolution of her paraplegia and iatrogenic Cushing’s features. She is now back full time at University with her studies and has a social life. Her clinical course was followed very closely over course of therapy for any signs of worsening/recurrence.
A few years back we treated a patient who got cyber knife for an aggressive /recurrent
Pituitary tumor with obvious necrosis of sphenoid sinus, and total anosmia
( lack of smell). Among the other objective improvements in the wound, one day she came out of the restroom after a treatment and exclaimed “I smell Lilacs!”
Medicare does not cover HBOT for “prophylaxis” of radio necrosis or to enhance radiation effectiveness. We have a cash pricing for about $250 a treatment for non covered use.
FrankOctober 14, 2014 at 8:27 pm #65600
Very interesting, thanks for sharing Frank.
Had my full-body PET/CT this morning. Good news so far is no signs of new disease elsewhere in the body, the small lung met that was radiated in February doesn’t even show up on scan, and an area in the small bowel that has lit up on the past two scans, but was believed to be transient inflammation that needed watched, also didn’t light at all. An area near the surgical site in my left tibia (from May) is lighting up still, but based on what he’s said before, I think once the orthopedic oncologist weighs in, he’ll say this isn’t unexpected this soon after surgery. While PET is far from accurate for brain, there was nothing that lit there either. Now we’re waiting for radiation, medical, and neuro oncologists to huddle and decide how to proceed on the RN vs. tumor front… should hear back later today or tomorrow. I am planning to mention HBOT when we talk to them. Thanks again — very much appreciated information.
Frank, have you heard anything back on your next steps?
JoeOctober 15, 2014 at 9:37 pm #65601
Great news on your PET scan results. Keep us informed about the RN please. I will see the neurosurgeon in a week, presumably to set an operation date and time for the brain lesion. I will be consulting with my oncologist too about when and if Keytruda might be started.
FrankOctober 19, 2014 at 10:12 pm #65602
I’ll be on the lookout for your next update on surgery and Keytruda and you’re in my prayers in the meantime.
Long story short on my RN… although I haven’t spoken directly to the neurosurgeon (I expect to this week), he and my radiation oncologist have spoken, and I heard back from her the day after my last post. In addition to the PET/CT, she also requested that the radiologist perform a computer image fusion of the brain portion of the PET/CT and brain MRI that was done two weeks prior. While far from definitive, they are both comfortable proceeding for now with this being continued RN. They’ve both said and I’ve read elsewhere that RN can often resolve on its own, but it can take some time, so they want to hold off on being too aggressive (Avastin or surgery) for now, considering that the dose of dexamethasone I’m on is still relatively low. We could increase the dose, but that won’t treat the RN or speed along its resolution. The goal is to keep me functional from a motor control perspective while trying to minimize long-term impact from prolonged high dose steroid use — a balancing act — and continue close monitoring with another MRI in about a month. It’s no guarantee still that this isn’t tumor regrowth, but at least some shift in a better direction. I also mentioned HBOT, and she didn’t discount it, only said that she doesn’t think we’re there yet. So for now, same steroid dose, continuing to live with some of these motor control issues, and close monitoring of changes in symptoms and with another MRI soon.
Hoping you’re still keeping at it in the pool, I know how much that physical activity can help and how frustrating it can be to have that respite taken away. I also hope you get some more answers this week.
JoeOctober 23, 2014 at 12:19 pm #65603
I saw the brain surgeon yesterday and I’m on for the operation November 11. He said he would not be surprised if the supposed tumor turned out to be radiation effect though he thinks it will be a tumor, which he classifies at just under 1 cm. as small and easy to remove. I’m not sure what he will do in there if it turns out to be radiation effect.
No swimming or heavy exercise for a month after surgery. So I’m going to have to get those in during the next three weeks. They certainly do brighten my spirits. I’m off the dexamethasone as of two days ago and on 10 mg. hydrocortisone twice a day. I will miss the dexa high too. My “think” pill.
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