tkoss

so i now must take hormones for the rest of my life

on opvido 12x @ 480mg going on 1 year , widespread itching sporadically and alot of joint pain

note; my 1st course of opvido 24x @ 240mg had no side effects. don’t know if going 2x a month at 240 would reduce sideeffects

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*

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.

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.

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……