› Forums › General Melanoma Community › My Latest Plan
- This topic has 13 replies, 11 voices, and was last updated 4 years, 9 months ago by
KellyH.
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- July 27, 2019 at 2:15 am
Hi Family, alot of you really helped me out Mentally (believe me!) And the “census” pointed out “I” should be the one who chooses MY healthcare directive. It was pointed out by some of you & and its a good idea, my primary oncologist Dr. Pakanati will be back this Monday (July 29th) i will then ask her for the refferal to see Dr. Hamid., there should be no excuses!! If she trys to tell me she cant, she wont yada yada yada, im gunna do the “second” best option and thats to be treated by Dr. Rodriguez at Kaiser Sunset, hes a Kaiser Onco and, like iv expressed, he knows Dr. Hamid and they help eachother out. And a HUGE plus, hes only like 25 minutes away compared to that Jang cat in Riverside which is about 85 miles, (round trip 170 miles!!) I spoke with Rodriguez yesterday, he has no problem treating me as long as theres a Clinical Trial, he doesnt do the Proleukin treatment, only Riverside and im not really feeling IL2 crap!!, low response rates….I mean, its my choice, and i want to be close to family, their my support system as you guys are!….i hate Kaiser now!
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- July 27, 2019 at 1:32 pm
Hey Mike,So glad you got a plan in the works and are empowered! That must be a relief to have Plan A and Plan B going, that is a big deal. It is so hard to navigate these large bureaucratic (sp?) organizations at the SAME TIME as fighting for your health. They expect the patient to navigate a system we know nothing about or have no access to the backend, ESPECIALLY the referral system . I once lost it in an allergy office when I had to try to coordinate the referral from my primary (called their office multiple time and they would say they faxed it and then would call the allergy office and they didn’t see it) I actually showed up at the appointment and the allergy office had it in the system, but said the patient needed to bring a printout and could I go home and print it out even though they could see the referral in the system , you can bet we had words and then management was involved 🙂 Really, you should only have to focus on your health and treatments. But the only silver lining is sometimes a little dose of righteous anger gets the old blood flowing. I always think of the movie The Waterboy! So when you get treatment next, just visualize Kaiser and how nice it will be to say “told you so”.
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- July 27, 2019 at 2:52 pm
Mike,
I’m so glad you have a plan! I’m so sorry that you’ve been put through so much. I agree with changing your name to something like what was suggested or Mikekicksmelanomasbutt! It may sound crazy but I think you need to quit hosting melanoma too. Like….I’m melanoma and my host was Mike, but he’s kicking me out!. Sometimes when we label ourselves, we become that label. I know, it’s crazy but I believe it. I try to keep up with what is going on with you but I don’t post much. I consider myself part of your family so I hope you don’t mind me suggesting the changes. I truly hope and pray that you get the help and treatment that you so deserve. You have my support!
Robin -
- July 27, 2019 at 3:16 pm
Man With Plan–yes! If a letter campaign from fellow patients would help with your referral…-
- July 27, 2019 at 6:05 pm
Mike, I would not rule out IL-2. If this drug works, it gives a prolonged remission if not cure. For example, check out this new clinical trial, which is recruiting in San Diego:
High Dose IL-2 in Combination With Anti-PD-1 to Overcome Anti-PD-1 Resistance in Metastatic Melanoma and Renal Cell Carcinoma https://www.clinicaltrials.gov/ct2/show/NCT03991130?recrs=a&cond=Melanoma+Stage+IV&rank=2
I would also request to test your tumor(s) for mutations. You never know, maybe there are mutations for which targeted therapy is available.Best of luck!
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- July 28, 2019 at 4:03 pm
Hi Anon, how funny, i actualy saw this trial on the Gov website as well before you posted it! Its in San Diego but nevertheless, Kaiser Riverside also does IL2, not sure as a “combo” with immunal therapy, they apparently also oversee clinical trials, havnt seen Kaiser Riverside having this particular study…i know time is if the essence and shouldnt waste to much time, like i expressed to you all and Bubbles, Monday (tomorrow) i will attempt to ask my primary onco AGAIN to write up a referral to Hamid, if ya missed a post about a week ago from me, while she was out, ( on vacation) her nurse actually got a hold of her while she was out and word got back to me saying “I” should ask for referral, i did through Member Services and it was DENIED all in one day! Reason was It did NOT hold weight cuz a treating physician did not write it up, if it had it may have been honored….thank you for your support Anon, ill keep you all posted after tomorow on this same thread of posts…take care..
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- July 27, 2019 at 7:15 pm
Keep fighting for Dr. Hamid. Your life is worth the absolute best medical care, take no substitutions. Still on stand down for the letter writing campaign ………. ready to go into action at a moment’s notice.-
- July 27, 2019 at 9:44 pm
Mike – good luck on Monday!!!
My other thoughts are – make sure to call Dr. Hamid’s office too as they can give you tips on how best to get treated there – how to navigate the insurance. I would try to see Hamid since he knows all the options and you are a fighter and your disease while a pain and not disappearing seems under control. I think he can give the best advice and/or trials.
I am also more positive on IL2, not that I have used it, but I agree with anonymous that for the few who it works for then you get durable remission. for me tvec seems to have helped, i dont think it helps that many, but someone has to be in the 20 percent, and it could be you for an intralesional or for IL2 or for whatever Hamid recommends
good luck Mark
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- July 28, 2019 at 3:14 pm
At least there has been a little progress!!! YAY!! Sorry you have had to fight all of this ridiculousness WHILE dealing with melanoma!!! But, hang tough and keep up BOTH fights through this next bit. Still ready to go all out against whoever needs it should you say the word!!! You’ve already heard the list of treatment options I would be considering were I in your shoes. We are all here for you!! celeste-
- July 28, 2019 at 3:37 pm
Thanks Bubbles, and all my extended Family, i just get so beat down over all this ya know? I know a lot of you have been in my position and its rough. Anonymous just spoke of the IL-2 treatment and not to rule it out, its not the 1st time iv heard this, ill never forget what Ed Williams said many months back about how “leary” i was of IL2 and its response rate/statisics (forget what stats) but Ed said quote: Why couldnt “you” be part of that 20% 30% of who benefits and responds to it?”… unquote) I get that, i know thats what Kaiser Riverside wants to do, theres not much hard hitting drugs left, i think im more worried about being so far from family, our car is old, my wife has to work, ill feel alone i guess and the other thing of IL2’s potiental severe side effects, those 2 factors are what drive me away. And i get i shouldnt be pussy footin’ around, these tumors are growing, the Sigmoid one is the REAL serious one out of the bunch. Nevertheless, im calling my onco now that shes back from “where ever she was” and ask her AGAIN to do the referral to Hamid….lets see, fingers crossed…love you guys, i really do….
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- July 29, 2019 at 4:40 pm
Hi mike!!!!
I’m so glad to see you back!! I had taken a little break from the board but checked back in to see how everyone was doing and was so glad to see you posting!!!!
It is great you have a plan and a plAn you are comfortable with!!!
I will tell you my son sees an oncologist locally that has experience with melanoma…..but it is a head and neck oncology clinic….his melanoma was on his scalp and we went there to see the best surgeon locally for his initial surgeries. That’s how we ended up there. Because they were not true melanoma speciAlists or a true melanoma clinic, I had plenty of reservations staying there for his care. He was only 17 at the time, they did not specialize in pediatric patients, and I was petrified of making a poor choice. The PA we see for the most part at the oncology clinic is amazing. I know I could never have survived any of this without him. He took my son on as if he was his own child. He made us appointments for second opinions in Boston with Dr. Flaherty, who has experience with pediatric melanoma. Dr. Flaherty was also amazing and the 2 of them correspond about my sons care regularly and because of that we are lucky enough to stay here in Buffalo and not make frequent trips to Boston…in fact we have been lucky enough to never need to go back to Boston. Sometimes the doctors you are most comfortable with are the best choice and the best option. They will get you into the treatments you need to fight off this
uninvited guest in our lives!!!
I am happy we stayed where we did. My son is in the best hands possible for him right now. And I think you will find you are too!!!
I wish you all the best as you continue on in your fight!!! I know this is a lifelong battle for so many of us and we will win the war!!!! I know it!!!
Keep us updated!!!!
Stay strong!!Kelly 🙂
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