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Im screwed...

Im screwed...

Posted By
MelanomaMike
7/10/2019 8:41pm
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Replies: 16

Well, my surgery is Canceled, instead of the ol' call from my Surgeons nurse to tell me a time blah blah blah, i get a call instead from my Oncologist leting me know because of all my biopsies coming back Melanoma, and that my latest treatment Opdivo is not working for me. I can handle the Opdivo being stopped, i saw this coming anyway, tumors arnt sappose to pop up eveywhere when yer on it, i get it, but stop a much needed surgery? An easy breezy one to? Ah man, so, her final words where, theres not much i can do, surgerys arnt working, Topline immunal meds arnt working (Pembro, Ipi & Nivo) she said chemo is my ONLY option and of course Trials..apparently the IL2 Proleukin might be to late to do but shes not totaly sure and another referal back to Kaiser Riverside i go, Dr Jang ill see once again. Im thinking if i do anything, ill go back to Kaiser Sunset and see Dr Rodriguez, he was cool as hell And the drive is like 20 minutes compared to over an hour drive at Riverside for basicly the same expertise...im so upset...heres a copy of my email ftom my surgeon......
"""" I had discussion with Dr. Pakanati, you are not candidate for surgery tomorrow
You have the colon melanoma probable small intestine lesion, the anterior abdominal wall mass and the mass you just had biopsied
She will see what other treatment would be available
Your surgery is cancelled for tomorrow"""""""(end)
Cut and dry huh? Pray for me as i do you all....

Melanoma Will Not Beat Me or my MRF Family! www.wespark.org www.covvha.net

Bubbles - (7/10/2019 - 9:09pm)

Well shit fire and save matches. @#(D#*!!!(@@#@(*#$^Q ARRRGH!!! But...you know I got plans - here we go:

If you have a butt mass and an "anterior abd wall mass" those should be reachable by injection....making intralesional therapy (Like T-VEC) an option. I would want to stay on Opdivo and add the intralesional if you go that route. Here are a ton of reports on intralesionals: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2018/12/repor...

Another thought is additional genetic tumor testing for "weird" mutations. Here is a trial that has been ongoing: https://clinicaltrials.gov/ct2/show/NCT02465060?term=nci+match Some melanoma patients, especially those who have not responded to current therapies have found success this way. For instance Maureen's husband (on this board) is doing well being treated with a drug typically used for HER-2 breast cancer. https://melanoma.org/legacy/find-support/patient-community/mpip-melanoma...

Then there are these options as they came out of ASCO this year: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2019/06/new-st...

And IL-2 is still a real option. TIL is out there as well. Radiation can be of benefit, too.

If your docs aren't forthcoming with options or don't seem to be able to discuss some of the ones I've mentioned here with you as options...then we may need to be finding you a new doc. Let us know if that's the direction we need to go. I bet other folks will chime it. Hang in there. You know what I always say: Melanoma sucks big green stinky hairy wizard balls. But - you ROCK! Stay strong and when you don't feel like it....yell at all of us and we will stand strong for you!! Hugs. c

MelanomaMike - (7/11/2019 - 12:02pm)

Thank you Bubbles, ill look over your links here shortly, lately iv been going into my own world woodworking, my daughters Aunt, Sheila, has just been diagnosed with Luekemia, AML, and is in City Of Hope in Duarte here in S Calif. Im making her a plaque with her Orange Ribbon (ya, and our color ribbon is black WTF!!?) So, thats helping me now till i figure what to do next, my pain level is like a "1" from 1 to 10 with my side stomach tumor, i take Naproxines for that, my intestine leision so far isnt hurting nor blocking any bowel movements yet (thank God) but is bleeding every other bowel movement. Im recollecting my head, i havnt been free or had a break from infusions, surgerys etc in 11 yrs!! But i do know time is of the essence....thanks Celeste, ill browse your links in a few....

Melanoma Will Not Beat Me or my MRF Family!
www.wespark.org
www.covvha.net

Coragirl - (7/13/2019 - 10:13pm)

Mike, I am not reading very often these days but tonight I thought I would check in. I am so angry to hear that your Doctor cancelled surgery and didn't really give you much hope! Please find a new oncologist, listen to Celeste. There is always hope and I am praying and hoping for you daily even though I am not visiting the board often. You are in my prayers, truly!

Amie Taylor

MelanomaMike - (7/14/2019 - 12:40pm)

Haaa!I remember you, back when we where both here alot, yes, it really SUX!! I do feel like they gave up on me, I mean, is my current condition that serious that any further treatment is pointless??? I have NEVER asked the big question, "How Long Do I Have doc?" It seems that as long as I don't ask this, I keep going on in life!.. I wrote an email yesterday to Dr Rodriguez at Kaiser Sunset, I met him once last year, very knowledgeable and I liked him! Like Bubbles said, I still have methods at my disposal, PV-10 (Direct shots into the liesions), maybe Radiation, and of course IL2 (Proleukin) and Surgery hopefully, why they would stop my surgery is beyond me! Surgery's keep us alive!!....thank you Amie, always a sister..

Melanoma Will Not Beat Me or my MRF Family!
www.wespark.org
www.covvha.net

RichInLife2 - (7/10/2019 - 10:21pm)

Mike, that really sucks. I can only echo what Celeste said. It might be time to find another doctor, second, third opinions, etc. You’ve fought so long and hard and with grace and courage, don’t let one doctor tell you it’s the end of the road. As long as you’re behind the wheel, keep on driving.

You are in my prayers. Good luck!

-Rich

MelanomaMike - (7/11/2019 - 12:20pm)

Brother Rich! Thanks man, all this has blown me away, i was NOT expecting to be basicly thrown to the curb! I mean comon! They had me do all these test, first one that kicked it off was the PET, then the Colonoscopy (and Endo) then the one i did Tuesday the CT Guided Biopsy to my right butt cheek and now they say "oh were stopping everything"!!!... im kinda pissed, is this normal protocol? I mean, i understand if my current treatment isnt working why continue, its just the stopping surgery part that chaps my hide....its all good, a page is turned, lets see whats next right? Thanks brother, hope your stable, gunna look over your latest post and catch up on a few people as well...

Melanoma Will Not Beat Me or my MRF Family!
www.wespark.org
www.covvha.net

MarkR - (7/11/2019 - 12:37am)

That really sucks Mike but try not to give up hope. Just look at how many people who were in the same position as you have gone on to beat this and survive by entering clinical trials. There are a good few options out there and I’m hopeful you can get onto a trial and it works well for you.
This is really rough but I have hope that you can still beat this and live a normal life
Best wishes
Mark

Casitas1 - (7/11/2019 - 11:51am)

Dang Mike! That's rough... I failed ipi/nivo back in 2015. I had bone mets, soft tissue tumor in cheek (not butt!)and nodes. My Dr.(Rock Star) put me on low dose Chemo. My tumor in cheek(golf ball size) became partially necrotic. We immediately started Pembro and I responded. Definitely throw the book at this shit. Too bad we couldn't find a Dr. that would inject us with everything to see what would happen?(might explode though lol...) Hang in there Mike! From one So.Cal brother to another.

Best, Paul

MelanomaMike - (7/11/2019 - 12:30pm)

And thank you Mark and Paul, things will work out, im just still in the "Absorbing" faze of having everything halted out of nowhere! Im kinda pissed...ill keep you all posted, ill see one of those doctors i told you about, somethings gotta give!....take care brothers...

Melanoma Will Not Beat Me or my MRF Family!
www.wespark.org
www.covvha.net

Mark_DC - (7/11/2019 - 6:52pm)

Hi Mike

Am sorry fir the bad news. also the way it was conveyed to you, should have been done in a more caring way. I was taken off treatment a couple of times and each time a downer.

Its not clear to me how many mets you have, I hope not too many. In which case intralesional might work, as celeste mentions, i would combine with nivo or pembro. Then look at all the options she mentions including i think IL2 as well as trials. If not too many nets then am surprised they dknt go ahead with the surgery.

Am sorry i cannot be of too much help but i do follow your posts and your progress. Hope you will see a new doctor and go for a new approach. And sorry too about your niece
Best wishes Mark

Edwin - (7/11/2019 - 8:30pm)

An April 2018 PET scan showed a growing tumor under my left jaw and my oncologist sent me to see a surgeon. His option was that surgery to remove the tumor would not extend my life and referred me to a radiation oncologist. The surgeon said that if I wanted a second opinion, I could consult with the Mayo Clinic surgeon who did my SLNB. Did your surgeon or oncologist suggest to whom you might go for a second option? I agreed to radiation and did not seek a second opinion on surgery.

Julie in SoCal - (7/11/2019 - 9:04pm)

Oh Mike! You have not caught a break, have you?

No that's not the right way for news (good or bad, but especially bad) to be delivered. Will be hoping and praying you can find treatment soon. Bubbles has some great ideas.

Shalom,
Julie

Stage 3c  (TXN2cM0)-- 2008 WLE, SNB, LND, HD-INF, GM-CSF, SubqQ2013 IPI, SubQ 2014 PEMBRO, SubQ  2017 resected; Feb 2019 SubQ T-VEC

Stage 3a 2017 NSC VATs; Carboplatin & Pemextred; radiation

jbronicki - (7/12/2019 - 10:54am)

Oh mike,

I'm so sorry you got that news and in that way. You know we all have got your backand Celeste has listed the options. I'm thinking the same way though, it might be time to go to a center where they treat and have seen cases like yours and will have both the experimental studies as well as newest treatments. I remember sitting in the patient lounge by myself at MD Anderson when my husband was in surgery and thinking this was the end, the surgeon came out and looked at me and said "Jackie, we aren't even thinking like that, this is just the beginning". As you know, we live right here by MD Anderson. You would ABSOLUTELY be more than welcome at our home, we have English Bulldogs that are healing just to look at :). If you want to explore that option, please know we would be there for you in any way possible. but if coming here to MD Anderson is option for you and just need to know that someone is in the city that has your back, we would support you in any way possible including just sending out prayers or even as little as cup of coffee. I can play you George Carlin clips of the ridiculousness of life, it soothes me, but not for everyone. Many hugs Mike, it hurts to know you are hurting.

Jackie <3

tedtell1 - (7/12/2019 - 4:34pm)

Mike;
I don't post a lot anymore....NED for over six months but read a lot of posts. I especially look for yours. I love your attitude and approach to this beast. I am so glad that Bubbles (Celeste, another great treasure) replied to you. I hope and pray that you can have some meaningful and helpful discussions with your onco and come up with a new treatment plan. God's blessings to you brother!
Ted

Ted Tellman

Stage IV initial, NIVO February-June 2018 stopped because of colitis. WLE in Feb 2018, NED after surgery and recent scans. Treatment at Regions, St. Paul, MN, Dr. Dudek

MelanomaMike - (7/13/2019 - 4:52pm)

Brother Ted, why thank you, this whole last 2 weeks have been a rollercoaster ride from scans (which im claustrophobic) to Colonodcopy/Endo test, to CT Biopsy and once results startedvto come back, thats when everything was cancelled. It still boggles my mind and i will get some ANSWERS next week! Melanoma Mike usnt going out without a fight, i believe they are WRONG to stop the surgery, i understand stopping the Nivo, its not working....take care bro...

Melanoma Will Not Beat Me or my MRF Family!
www.wespark.org
www.covvha.net

Affected - (7/22/2019 - 9:06pm)

Hi Mike,

You're in my prayers.