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an update from Tkoss…i actually thought i had the best case going for me…….but….after recurence and a 2nd lymphedectomy I had nerve damage which settled to a manageable state….IOW no impairment but a feeling that never leaves my upper arms….
- July 30, 2023 at 3:57 am
i had to do a 3rd surgery because PETSCAN* after 2nd Lymphodectomy* revealed melanoma still existing after 2nd suregery…….problem is the 2nd lympedectomy left scar tissue which could not be gotten behind on 3rd lympthodectomy. so there is some question as too efficacy of 3rd surgery.
but what i want to draw you attention to is that after 2nd and quickly there after 3rd surgery i had 4 rounds of ipi + 4 rounds of nivo. 3 weeks after last ipi infusion I had debilitatigng headaches requiring ER and hospitalization . Seems Ipi inflamed and enlarrged my pituatary gland causing the debilitaing headaches but also disruptions to pituartry activities as well as thyroid disprutpion. I am thus on homrmone presumbly for years to come. Of course it may not have been just ipi, but the combo of ipi + nivo but i am back on nivo since about 4 weeks. so that is too soon to judge…..SO if it happpens that you get debilitating headaches don’t wait around,..get to an ER stat that knows from headaches and that will do an MRI………i think they diagnososed me within minutes of review of case history becase they gave me some IV homrmones and the pain was gone in minutes never to return..so far its been about 8 weeks.
epic…..good one on the Texas comment…i always say Texas wants’ to be in the 20’s..unfortunately its the 1920’s/
- June 18, 2023 at 2:38 pm
I had 4 axial LNs extracted at time of sentinel LN biopsy…MM’s in size. after a year of opvido and then another year plus a few months they came back to same armpit…this time much larger . I think the surgeon removed 11. before the original LN surgery I c.ouldn’t feel them in my armpit…..after the recurrence, you could grab them by your hand. Neither the onc nor i could say ,,,,,’did opvido delay the new growth? not even sure if its metastasis cause it was in the same armpit.
As to the headache….just the one….the great big one all over…….
BTW your skepticm is noted, its like picking burrs out of your sock, your have to shut up , listen and maybe u can earn some valuable intel…i was well under care in the ER when someone suggested the swollen pituitary was a result of ….hold on …don’t jump the gun…..you thought i was gonna say Ipi……….well no…no one said anything like that in the ER before the Brain scan….no one said that till my next day when a resident Onc made their rounds. They new enough to apply the right drugs but wouldn’t offer up but the most vague reasons as to cause of the pain.
So the next day in the hospital I did learn from the hospital resident Onc that the pituatray gland can swell on Ipi. The radiologist or one of some 20 docs that I saw said my pituatary gland ‘lit up’ on the MRI. That was a lot different than it was described the day before as being ‘inflamed.”
This is my opion based on what I could glean……..Ips lead to pituitary glan swelling which lead to incurable headache except y a IV medication…..which laid it down almost immediately.
I don’t know if the swelling is now going down since I stopped taking the Ipi. Know can say until another Brain MRI>
You really got to listen ,,,,,hard………..to learn just exactly what they are thinking.
here is something i can attest to: there is a huge difference in quality of care depending on where you go.
The first team at a notable hospital neary got It all wrong….i won’t go into details…but the melanoam team at UT SWST. Dallas , was a life changer.
Still you really gotta parse their words……..alot*
EDIT FUNCTION DOSENT WORK -REPOST WITH TYPO CORREDCTIONS
- June 18, 2023 at 2:04 pm
I will answer as responsibly as i can from my experiences…this is not what doctors told me
1. no one mentions what type of immo you are on or going to get. Makes all the difference. I was on Opvido 240 mg twice a month for a year. With ABSOLUTELY NO SIDE EFFECTS. NONE…i GAINED WEIGHT and stayed NED for 1 year and some months after last infusion.
Then LNs blew up(enlarged) spectacularly…….no one can or would tell me that Opvido did anything…… original 4 LN”S were very small….and then some 1 year and a few months after last Opvido dose they blew up to the size of a spoon. (excluding the handle LOL).
2. after 3 LN surgeries (second one didn’t get all the LN ‘s involved..long story there) i went on Ipi + Nivo….Ipi every 3 weeks x 4 and Opvido still continuing. I posted above that the only side-effect was itching..I assume it was the Ipi. Amend that. After the last Ipi dose 3 weeks prior I wound up in ER with a crushing headache. Swollen pituitary gland…..turns out that is a side effect….In my case delayed by some 3 weeks. It was so persistent and all encompassing of my head that it would make you want to jump off a high bridge….but they diagnosed with Brain MRI, applied drugs and pain disappeared in a matter of minutes.
3. Triple check if you change states that you are still eligible for ur new state’s Medicaid. If you come to Texas you are S-O-L.
4. Time commitment….Nivo/OPvido…1-1/2 hours every 2 weeks….or double the dose and go once a month. Other than that there is no disruption in you life, unless you get side effects. But again i only had side effects when taking Ipi.
5. Absolutely i will do whatever a good Melanoma Specialist tells me. D.id i mention the 2nd surgery?…that was not a melanoma specialist but a general oncologist and he dropped the ball. SOC…”standard of care” are devised thru trials…IOW scientifically not anecdotally..Bubbles can best address this….
The temptation is to play doc…I wouldn’t.
D i will answer as repsonsibly as i can from my expeiences…this is not what doctors told me
- June 18, 2023 at 12:02 pm
1. no one menttions what type of immor y9ou are on or going to get. I was on Opvido 240 mg twice a month for a year. ABSOLUTELY NO SIDE EFFECTS. NONE…i GAINED WEIGHT. stayed NED for 1 year and some months.
Then LNs blew up(englarged) spectaculariy…….no one can or would tell me that Opvido did anything……4 orginal 4 LN”S were very small….and then somce 1 year a a few months after last Opvido dose they blew up to the size of a ping pong ball.
2. after 3 LN surgeries (second one didn’t get all the LN ‘s invoved..long story there) i went on Ipi + Nivo….Ipi every 3 weeks x 4 and Opvido still continuing. I posted above the only side-effect was itching.. amend that. After last Ipi dose 3 weeks prior I would up in ER with crushing headache. Swollen pituatray gland…..turns out that is a side effect….in my case delayed by some 3 weeks. It was some persistant and all encompassing of my head that it would make you want to jump off a high bridge….but they diagnosed with BRain MRI, applied drugs and pain disappered in a matter of minutes.
3. Triple check if you change states that you are still eligibel for ur new state6s Medicaid. If you come to Texas you are S-O-L.
4. Time committement….1-1/2 every 2 weeks….or double the dose and go once a month. Other than that there is no disruption in you life, unless you get side effects. But again i only had side effects when taking Ipi.
5. absolutey i will do whatever a good melanoma specialist tells me. did i mention the 2nd srugery?…that was not a melanoma specialist but a general oncologist and he dropped the ball. SOC…”standard of care” are devised thru trials…IOW scientifically not anecdotally..Bubbles can best address this….the tempation is to play doc…i wouldn’t.
3c from 2019. 3 LN surgeries and now in 2nd round of immo.
- May 3, 2023 at 3:20 pm
1st round….opvido…2x month for a year. never 1 side effect
2nd round ..nivo + ipi …have had 3 of 6 infusions …3 weeks apart.
started itching like a blue tic hound on a lousiana porch…..
other than that no side other side effects
ps..anyoone know the best remedy for itching?…taking claritin and lots of skin cream helps a little. the therory is because your skin is drying out…although it doen’s feel dry……
this is from Bristol Myers brachure entitled ‘ For Adults with Advanced Melanoma”
- March 13, 2023 at 12:58 pm
no where do they refer to STAGES… not one mention of any STAGE.
they do say quite prominently and on several different pages
“In an analysis of 945 previously UNTREATED patients.”
then the stats. which is 65% afte 6.5 years of the Comobo……..23% of ipi alone. They spill alot of ink on that stat, repeating in varous forms
so what defines ‘previously untreated’ and doe the meter start at first biposy or first WLE of first infusion?
an update on nerve damage. I have never been able to get onc surgeon or oncologist to say much about my nerve damage. In particular I asked about an kind of PT to help. They smiled and nodded in the way the do.
- December 1, 2022 at 3:13 pm
once out of the room the nurse said this: they don’t recommend PT before 6 weeks because, in my case of a lymphodectomy, that PT could dislodge remaining melanoma cells from excision site.50
btw gopher and JudiAU
- November 14, 2022 at 2:39 pm
i am still playing doctor. new clinic has not accepted me yet.
current oncs talked about getting a petscan……i see on the patient forum its not been scheduled.
would a brain MRI be in order? in essence i am kinda starting over from the beginning. my thinking of course….if LN’s were much larger than original condition then its seems 60chances are microscopic melanoma likely other places but especially the brain.
thanks gopher ..i take all ur points
- November 8, 2022 at 3:58 pm
judiAU…i am in Fort worth. i was at texas oncology and they had 1 melanoma specialists for 400 doc, in houston. so i went JPS FTW where my bro got good care for throat cancer. Ist onc suregeon was very good….alas he moved on.
so if there is anyway to find a melanoma onc specialist i would love to try. i am on medicare.
a follow up to my own post:
- November 5, 2022 at 11:32 am
i have no idea if these guys know didly about melanoma. I left one practice cause out of 400 oncs they had one melanomoa specialists.
so if they don’t specialize maybe they are not qualified to be my docs???
also, and forgive me for sounding like i know something….but have been forced to the internet for knowledge.
i definitely have never had a BRAF test but it seems that can be equally as efficacious as immo therapy and….660
I understand there is not much or any improvement with ipi+ nivo vs nivo…i am , self ascertained 3c. No comment on that from ONc’s after 3 years+.