› Forums › General Melanoma Community › Dr. Rodriguez Wasnt Much Help
- This topic has 8 replies, 8 voices, and was last updated 4 years, 9 months ago by
MelanomaMike.
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- July 16, 2019 at 1:41 am
Hi yall, well, Dr. Rodriguez got back with me a little while ago, hes in agreement with my current stoppage of Treatment, he called a sugery ” Useless” at this point..
He did say to wait for Dr Jang at Kaiser Riverside to get back to me, a referral is in to him for possible clinical trials and or chemotherapy….
Damn! Like I said to brother Ed W., i wanted Rodriguez to kinda take me under his wing, hell, with him rubbin’ elbows with Dr. Hamid, them two would have been a great firing sqaud! I cant win anymore, its obvious…so, lets see what Dr. Jang has to offer…..aaarrhghh!
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- July 16, 2019 at 10:33 am
I’m so sorry Mike that you keep getting bad news. That sucks! Please don’t give up though because there are options. I would contact Dr. Hamid for TIL therapy or Dr. Rosenberg at NIH for TIL treatment. My husband went through TIL treatment and even though he wasn’t considered a responder, he feels it helped. If you read his story you will see he also had chemo too. He has had many surgeries and treatments. Right now he is on a breast cancer drug. He went to Sloan Kettering and found out he had an over expression of Her 2 mutation. Keep fighting Mike!!
Maureen-
- July 16, 2019 at 1:12 pm
Dear Mike,
I am of the same mind as Ed and Maureen. Go see Hamid il LA. I did last February to have his opinion and see for myself if I need his care at some point. He’s a straight shooter AND he’s got a lot of options at the Angeles Clinic. And I would also go with what Maureen suggests. There are many pathways that can be targeted. You need to find a good one right now and throw everything at your melanoma. Cryotherapy plus resuming immunotherapy as I suggested once to Maureen is promising and has worked. Go back in my threads. Other drugs that are off label like metformin, dipyridamole, mebendazole, propranolol are useful and have been tried, – albeit alone and on a small number of patients but nonetheless -, and showed activity. You have to hit a pathway to hurt the mel, then prime your immune system so it reckonizes the antigens and then you fight back. It has been done. You can do it too. We are here to support you and we are right beside you.
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- July 16, 2019 at 8:23 pm
YEP!!! What they said. What Ed said. What I’ve already said! This is the lovely Maureen I mentioned in one of your earlier threads! Melanoma sucks. And having to fight for your care while fighting melanoma SUPER DUPER SUCKS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Hang tough, buddy. Hopefully, Jang will have some viable options. But, ain’t no harm in calling Hamid on your own!!! Hugs!! c -
- July 17, 2019 at 12:09 pm
Newbie alert, but maybe a new perspective as well.I think your current doctors my have determined that THEY are out of options given their standard and maybe (somewhat) modified approaches, and they aren’t willing to “go more radical”, even if that is what will work for you PERSONALLY. i just had a similar experience yesterday with a dermatologist who wanted to shave biopsy a suspicious mole. I wanted to find a way to determine if it is melanoma (needle biopsy) then monitor it for my first course of IPI/DIVO to see if it responds. What’s gonna happen ? I get stage 3 from the stick? I’m already stage 4. Shes’ talking about not knowing the margins that way, not being able to determine next steps from a needle, and the only way to determine if it mel is to shave or excise. I’m saying there is time for either shave (NO!) or excision (YES!). She was pushing shave because she could do it right then without scheduling something in a new appointment. My decision was to do nothing (but come back and ask y’all) and wait 3 months to monitor in situ. She came back with the follow up paperwork and asked if it was more convenient for me to be seen in another location (where she didn’t have office hours.) While it is more convenient, I took that as her not wanting to deal with a patient that din’t just say “OK Dr, whatever you say!” They REALLY don’t like that!
I’m not comparing my minor experience with yours epic one, so please don’t interpret this a trivializing what you are facing at this difficult crossroad! But it sound so me like your DRS are out of options, but you aren’t unless you want to be! I’m wondering how Kaiser plans to cover you health care costs if you are forced to go outside the plan because they have indicated there are no other treatment options. When of course there ARE – the are just choosing not to pursue them! You may need to put on your grizzly suit and bear up!
Best of luck with with your next steps. I’m imagining an army of melanoma patients, past and present, standing right with you!
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- July 18, 2019 at 3:46 pm
Thanks again guys, to be honest im already passed what occured a few weeks ago (dropping me like a hot pan) i have one option of IL-2 Proleukin out at Kaiser Riverside with Dr Jang and the other “hopeful” option is under Dr. Hamids care at Angeles clinic “if” i can be accepted and if Kaiser will pay for my treatment. I signed up for a consult so, lets see!! You are right, my team ran out of options, 3 different topline immunal drugs and surgerys did not work for me, there really isnt a lot of meds for late stage Mel.
Im hopeful, and im trying to be strong, im thinkin of a Flight to Texas to see my 2 brothers, havnt seen one of them in 10 years!…it will be good for me before my treatment begans…..love ya all….
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