here is what is I sent today via My Chart….i have no idea what will happen

to: UT Southwestern Dallas via MyChart

“the last thing Homsi said to…Read more

the good news: he is leaving UT Southwestern next week. Was he run out of town? I dunno and i doubt they would say.
bad news: he is leaving me with no referral to another onc at UTSW

he handed my case to the…Read more

from july scans

PETscan; concerning for mesenteric pannicullitus inflamation vs. lymphoma vs. metastasis

and

CT: evidence of ileocolic and aortocaval lymphademonathy, likely…Read more

What are my treatment options? i am considering find a new doctor.

there are a few LN’S involved in my abdomen, so I understand removing them…but what are the medical options. I am braf+

i have been on opvido for nearly 2 years and it sill spread

am i gonner and how soon?

my question is: when did the clock start?

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…Read more

i had to do a 3rd surgery because PETSCAN* after 2nd Lymphodectomy* revealed melanoma still…Read more

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…Read more

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 f…Read more

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)…Read more

4 rounds of ipi/novo barely a side effect…mainly itching…then on to nivo only. so 3 weeks after last ipi/novo combo and 1 nivo……man comes the headache, just one, all day all nite , all the head, set in.…Read more

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…Read more

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…Read more

so on to yervoy+ opvido. they gave me a beautiful brochure from Bristo Myers.. very expensive.

it claims for BRAF + melanoma sufferer there is a 58% SR after vervoy + opvido regime after 5 years.

thing is no…Read more

but

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…Read more

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.

but also

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…Read more

i am going to Tex Onc who have an melanoma specialist in Dallas

preciate you all’30s help.

posted my experiences for newbies but it seems forum participation way down… so probably won’t reach anyone

tim

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 were my bro got good care for throat cancer.

so if there is anyway to find a melanoma onc specialist i would love to try. i am on medicare.

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…Read more

1-1/2 years after last infusion both axial areLN’s enlarged and hardened to point of discomfort and will be removed next week.

i presume i will do immmo again after that.

just specualtion…Read more

englarged LN’s show up on scan. Doc never suggested i self check so the0y have been enlarg and recede several times over last 5 months.

he sent me to staff surgical oncoogist for a biopsy. The Onc Surgeown spent about 3 mintues and did not mention biopsy but said “surgery”…Read more

“o other tumors found’

unfortunately not meeting oncologist for 10 days

what does this mean?

i was thinking about the other drugs that might be invovled if you are treated for Stage 4. pain or nausea or swelling or other palliative or complimentary drugs.

i have to chose a prescription drug plan, teh cheapest at $6.90, the most expensive $68.20 /month

my question: if i am NOT NED and need to go nivo + ipi are there other drugs that go along with that regime that are not covered by…Read more

they needed a Petscan to see which lymph nodes were involved.

how can a CT scan discover current LN involvement?

and this

Fort Worth’s JPS Named the Best Hospital in the Nation – D Magazine

its not unusual to go for a scan and see a deputy with a prisoner in shackles……but they  saved my life.

I could have gone to Texas Oncology but it…Read more

thanks to obamacare that i could get insurance and it was affordable.

thanks to JPS FTW infusion clinic and the gang.

thanks for you all help here at PIP>

tim kaastad

you want to get all the melanoma, beyond the margins.

my wle required anesthesia and I used an oncological surgeon who understood surgery and cancer.

if you have a choice, why not go with the best available?

2nd Moderna shot. lots of local pain at injection site, upper body soreness, some fatigue. 24 hours later.

i wonder why 2nd shot would be so much worse than the 1st.  any ideas?

i finished a year of Opvido in December. since ending infusion I have had no ill effects except for a small bout of constipation.

Onc assured me there were not lingering effects from immo, although I might disagree in as much as I never had constipation before, That’s 64 years of history.

no fatigue though.

I did one round of…Read more

more importantly:

I had a…Read more

as i said at the other thread, my brother got all the attention cause of his weight loss. I gained 5 lbs on nivo. I felt a lit…Read more

Anyways shortly after my diagnosis, I was near Tulsa and decided to take a look a CCA.  I have seen their commercials constantly for the last 5 years. It was Sunday so there were…Read more

my onc said it was NOT concerning until they reach 10mm.

1 and 2 mm spots found. onc said not a concern till 10mm.

I will be an expert on 3c melanoma when this is all done and said.

interesting convo about Moderna vaccine. both the onc and I got 1st shot. he said we were lucky as vaccine now in short supply ALTHOUGH they have enough for 2nd dose. so i guess when you get the first they lay…Read more

this is a big help

what’s it mean?

1. Two tiny nonspecific pulmonary nodules are present, not previously seen. Recommend attention on follow-up.
2. No significant abnormality of the upper abdomen.

given the statistical similarity of SR’s it would seem that there is a real judgment call on combo v. nivo , quality of life v. SR.

is this true amongst doctors?

does this mean if you get a tumor, rather than surgery or long round of infusions , you simply take a shot?

would this be used for a melanotic moles on discovery from a biopsy?

either situation suggests radically different treatment regime than immo  infusion therapy.