› Forums › General Melanoma Community › Stage 3C – no adjuvant treatment available due to MS
- This topic has 10 replies, 4 voices, and was last updated 6 years, 7 months ago by jc2dad.
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- September 16, 2017 at 5:42 am
Working diagnosis of MS in 2006. Onco at MD Anderson thinks too big of a risk to get IPI and precludes me from any trials. Rejected Sylatron so in wait and see mode. Does not make me feel “warm and fuzzy” just doing nothing. Being very aggressive with scans every 2 months and blood work monthly. No CLND going to do ultrasound every few months on nodes.Anyone have any advice. Praying I’m one of those rare individuals that never progress.
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- September 16, 2017 at 1:54 pm
So sorry you had to become a member of this club. "Observation Only"/"Watch & See" is a bonafide option for Stage III folks. And, there are a number of people who do well with it. But I can certainly understand the lack of a warm and fuzzy feeling you have toward it. Nivolumab/Opdivo may be an option for you and its side effects are not as harsh as Ipi's. Have you asked the onc about that? If you're being seen at MD Anderson they should be up to speed on that.
With regard to MS — please bear with me on this — in many cases it ends up being a case of misdiagnosed Lyme Disease. I've seen this first hand, which is why I'm bringing it up. Lyme is not an autoimmune disease so you would have more options available for melanoma treatment. It's also not restricted to just the east coast. Actually, it can be found all throughout the US, Canada, and Mexico. It may behoove you to get a second opinion on your MS to make sure it actually is MS and not Lyme. Lymenet.org will have more information about that. In your case a diagnosis of Lyme would work to your benefit in terms of melanoma treatment options. I know this sounds bizzare and I apologize in advance if this is a sore subject.
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- September 17, 2017 at 3:22 am
I'm 3b and chose watch and wait and it's worked good for me-I'm coming up on 5 years and NED so sometimes doing nothing is something and that something may be the best thing for you. Whatever you choose or have chosen for you is the right choice.
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- September 19, 2017 at 6:45 am
Thanks for the response. The “diagnosis” in 2006 was a working diagnosis as imaging showed no lesions but symptoms of ME. Definitely had a neurological episode losing bladder and bowel control, hair and fine motor skill issues, cognitive issues, etc. Was observed by top MS doc in my region. Never anything via imaging or spinal fluid that nailed the diagnosis. Was given beta interferon and steroids and issue cleared up within six months back to normal. Had a small episode (exacerbation period) in 2010 and again last fall that lasted a few weeks both times and affected my fine motor skills.
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- September 18, 2017 at 1:52 pm
The MS definitely complicates your situation. Tight time span scans are a good idea. IF… and that is indeed an IF… IF you progress, those frequent scans should detect things in "early phase". I know, it seems weird to consider anything that would place you into stage IV as "early phase"… buuuuut… the sooner the better for noting any progression. Smaller lesions would be easier to attack, both surgically as well as chemically. With Ipi being the "bad boy" of harsh side effects, you are probably wise in avoiding it with your MS. That is certainly something you don't want to aggrevate unless it becomes absolutely "necessary" to take the risk. I'm assuming since surgery, nothing active is showing… yes? You're technically NED at this point, right? I can't imagine how unnerving watch and wait must be for stage 3 patients, particularly someone with an aggressive nature. Prior to Yervoy, there wasn't much option, and Yervoy is still fairly new to the stage 3 adjuvent protocols… so I imagine there must be at least a few others here in the "watch and wait" boat with you.
All of that said….. should you progress… IF IF that occurs, you are not totally without immunotherapy options. Investigations and research in treating autoimmune patients with Ipi and/or either of the PD1 agents is in the early stages. The longer you go with clean scans, the more learning is being done, and the more docs can mitigate the additional risks. At this point, there are TWO noted cases of melanoma patients with MS being treated with Ipi. One ended up doing just fine on it… the other had a flare of the MS. Both of these case reports comeing from 2014, and still being the same two referenced at ASCO 2017.
Fingers and toes crossed for continued clean scans for you.
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- September 19, 2017 at 6:48 am
My Oncologist stipulates that if something shows up (as I am NED) then all treatment options are on the table at that point MS or no MS. He feels that the adjuvant setting options we currently have available there is a greater risk of an MS or neurological flair up than any benefit to treatment. Lord willing I will continue to remain NED. Next round of scans in early October. Thanks for your reply. -
- September 19, 2017 at 3:32 pm
October… I'll keep you in thought… NED NED NED! Hey man… you (literally) gave melanoma the middle finger. That should have been warning enough for this beast to know its messing with the wrong dude… right? 😉
On a side note… did you see your tv star doc on the Today show a couple of weeks ago? He was on the Harvey "ride out" team. Preeeeeetty sure the man is actually a robot, because he never seems to sleep. Suffers from what I call "too much give a sh**". 🙂 https://www.today.com/health/harvey-doctors-wade-through-floods-treat-cancer-patient-t115832
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- September 19, 2017 at 3:48 pm
HA! I'm surprised he remembered that shirt idea! It was my husband's idea. I think he liked to make people go faster, to challenge ME to go faster! Between the hubs and Doc MW, my "double dog dare ya" buttons were always being pressed. Tough fighter? Nah… just a touch competitive. HA HA HA!
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