Update! Saw Dr. Jang

This topic has 17 replies, 13 voices, and was last updated 5 years, 9 months ago by lindy303.

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- August 16, 2019 at 4:04 am
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MelanomaMike
Participant
Hi Family, well, as you know i went to Dr. Jang today, i was there like 15 minutes, he coulda just called me! A lot of my doctors call me..
Anyways, he tells me that right now, there isnt a Clinical Trial for my current Melanoma & health, he says if i where BRAF positive there would be, so, thats out the door, however, he is going to “Re-test” for the BRAF mutation for good measures, i asked if i could possibly change from Neg to Positive & he said it is possible but not very common, he said hes had “1” melanoma patient who’s tumor or “tumor’s” had tested Positive after being Neg….
Ok, game plan, he says we have to throw the Kitchen Sink at it, we already tried “Everything But”, now its time for the sink…heres his menu of meds: ABC (Advanced Bio Chemotherapy)
Cisplatin
Vinblastine
Temodar
And 2 Bio’s Interferon & Interleukin.
Every 21 days ill come in for 5 days
Monday thru Friday then Friday night im discharged home for 21 days of rest. Ill repeat this 3 times if it shows promise & my body and mind can handle it…
Not sure about the Interferon!?? I may have him take that off the menu! Eeeeeh! So guys, please tell me what you think, i have no choice, gotta do something! He also offered his opinion (i didnt ask) i have “less” then “6” months, not less then a year like Pakanati told me..Jang said we need to hit it hard, & his “cocktail” of meds had good results for others…well see…went & saw my daughters aunt Sheila, bless her heart, AML Luekemia, shes on her 2nd round of 3, alot easier now this time knowing what to expect, so frail, hairs gone i almost thought i had the wrong room, but shes adorable and shes winning! Shes showing good progress….she LOVED her plaque i made her! i told her shes lucky, her color cancer ribbon is Orange!! Ours is black!….love ya guys, please respond!! Im scared & nervous & strong all roled up..

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- - August 16, 2019 at 12:00 pm
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  MichelleRHG
  Participant
  Even though it sounds rough, I’m glad he’s moving forward with treatment! You are really brave and have the best attitude so I know you will do well. Everyone here is cheering you on!!
- - August 16, 2019 at 12:18 pm
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  SABKLYN
  Participant
  Hi Mike,
  Sounds like your Dr is direct and has a plan. It sounds really aggressive, which is what I would want given the same circumstance. As I may have mentioned in the past, IL-2 from what I have read is best administered in a facility with experience handling the side effects. If you’re a responder chances are you’ll have a great outcome. Fingers crossed for you, Mike. Keep us posted!
  Best,
  Stan
- - August 16, 2019 at 1:09 pm
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  tedtell1
  Participant
  Mike:
  15 minutes after your long drive…….whaaaaaat. Nah, just kidding. You really needed to do this one face to face. Well, now you got a plan. Sounds like a pretty intense plan, but you situation calls for intensity. I love your honesty….scared, nervous but strong! Love you brother and keep praying for you. I know I speak for many when I tell you, we send lots of positive vibes your way and care very much for you and you inspire us!
  Keep on keeping on,
  Ted
- - August 16, 2019 at 2:12 pm
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  Bubbles
  Participant
  Oh, Mike!! Melanoma doesn’t make it easy does it???? You are one tough cookie, so I know you can handle this!!! Seems like Jang is offering some version of the Dartmouth protocol combined with IL-2. IL-2 is a rough regimen but can elicit real and durable responses. Sending big hugs and warm wishes your way. When is bootcamp to begin???? Love, c
- - August 16, 2019 at 4:03 pm
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  mandyjill
  Participant
  Mike,
  I get on here everyday just to see how you are and see your responses to other people. You are just so positive. I am praying for you daily. Now go kick some melanoma butt!
  Amanda
- - August 16, 2019 at 4:04 pm
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  jbronicki
  Participant
  Hey Mike, I’m so glad Dr. Jang is retesting the tumor, that makes me feel better about him as a physician since he is willing to look for this even if improbable (most likely it won’t have changed BRAF status, but I’m glad he is willing to pull out all the stops on this and that is what you want right now).
  
  Wow, that is a big kitchen sink, but god damn it, if anyone can handle it you can. It’s going to be a ride for sure, but we hear for you. This is the place you can come back and let it all out during your treatment. Hugs to you, your family, your daughter’s aunt with her own battle (AML is a big battle). I can imagine you are ready to get the show on the road, but probably a wee bit scared as you said. Know that we have your back. I will be praying for a quick and positive outcome. We need you on this board!
- - August 16, 2019 at 4:21 pm
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  lindy303
  Participant
  Looks like Dr. Jang is following the NCCN evidence blocks, just changing carboplatin to cisplatin (sorry I’m a pharmacist so I always look at the guidelines/pathways). Everything else is evidence based and has shown good results, so keep the faith!!
  I admire your strength and your sense of humor. We’re all rooting for you and sending prayers and hugs your way!
  Linda
  - August 16, 2019 at 5:28 pm
    
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    jbronicki
    Participant
    
    Hi Lindy,
    
    First, NEVER apologize for being a pharmacist, your body of knowledge is SO INCREDIBLY VALUABLE and needed. Quite honestly, I often comment to people that I trust my pharmacist above all others 🙂 Second, thank you for sharing the NCCN evidence blocks, what a fabulous tool. I used to be a medical librarian and now in clinical research, that rubric for is so cool and does what it says, creates a jumping off point for stakeholders to discuss treatment pathways. Hadn’t seen that before, that is really cool.
  - August 16, 2019 at 5:28 pm
    
    Quote
    jbronicki
    Participant
    
    Hi Lindy,
    
    First, NEVER apologize for being a pharmacist, your body of knowledge is SO INCREDIBLY VALUABLE and needed. Quite honestly, I often comment to people that I trust my pharmacist above all others 🙂 Second, thank you for sharing the NCCN evidence blocks, what a fabulous tool. I used to be a medical librarian and now in clinical research, that rubric for is so cool and does what it says, creates a jumping off point for stakeholders to discuss treatment pathways. Hadn’t seen that before, that is really cool.
  - August 16, 2019 at 5:28 pm
    
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    jbronicki
    Participant
    
    Sorry, meant Linda.
  - August 17, 2019 at 4:44 am
    
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    lindy303
    Participant
    
    no apologies! Linda is my real name, Lindy nickname (and my user name)
- - August 16, 2019 at 5:41 pm
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  gopher38
  Participant
  I have two wrist bands, orange and black, but my orange is for animal protection. You know what the black is for.
  
  Mike, I hope this treatment is the one that turns it around.
  - August 16, 2019 at 8:19 pm
    
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    emmybear67
    Participant
    
    I am not understanding why everyone seems to be afraid of the interferon?
- - August 16, 2019 at 11:37 pm
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  Cindy Lou
  Participant
  Mike, You have touched so many lives including mine through your witty posts where you honestly express your feelings. Keep up the fight! Praying for you & your family.
- - August 17, 2019 at 12:29 am
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  lkb
  Participant
  Gooooood vibing you aplenty!!! Did the doc say when results would become detectable?
- - August 17, 2019 at 2:09 am
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  guynamedbilly
  Participant
  Good luck Mike, that sounds like you’re in for a rough time, but we know you’re a fighter and that’s what it takes.
- - August 17, 2019 at 3:17 am
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  richard24
  Participant
  Glad they have a plan in place to help you fight through this. Will keep you in my prayers.