› Forums › General Melanoma Community › Very rare situation and I need to dig deeper any thoughts?
- This topic has 10 replies, 7 voices, and was last updated 4 years, 11 months ago by
jrtufo.
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- May 16, 2019 at 1:57 am
Well, it is time for my 4.5yr flare-up, I just want to make it another 4.5yrs. My lung mets are causing serious issues. I had a massive Pleural Effusion and the fluid biopsy results came back after a week of testing. The results were positive for melanoma. I also had a reoccurrence in January on the scar of the original site, my left groin, I had several surgeries in this location and I am surprised it took 8.5yrs to show a reoccurrence. So after this last surgery, I no have a 14in. scar looks like half my leg was cut off. I can live with that but I think this latest groin nodule also triggered additional metastasis. There is about a 2% chance that melanoma results in Pleural Effusion, am I really that unlucky? Now I am also diagnosed with a diffused interstitial infiltrative pattern of lung metastasis and this is even rarer. And it gets better, I am told my prognosis is months not years even with treatment, so with all the side effects I have endured the past 9yrs I have to decide, do I forgo treatment and enjoy the time I have or do I go all in and fight this to the end(one end or another). I have decided to fight this but the advice I am getting from some VERY good DRs who have helped keep me alive for 9yrs and Yervoy(IPI) treatments? Isn’t that going backward? I failed to complete keytruda due to side effects, I removed from a trail of a cocktail of mekinist, taflinar, and phenphormin, and could not even handle mekinist and taflinar alone. I really don’t know if yervoy is going to do the trick and I am not sure the combo of yervoy and opdivo is much better(nor tolerable).My only hope is the Pleural Effusion was actually due to an infection and that infection is also showing up as the fluid/cloud in my lungs. There is still the fact that melanoma was definitely in the pleural fluid but when initially drained it was a light wheat color not black or dark as you would expect malignant fluid to be. I have a PluerX cath in my chest that was draining wine color but it is also now wheat color and actually very little volume and is coming out next week.
Any lexperience with latest treatments? Any thoughts on the Yervoy approach? thanks for reading….
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- May 16, 2019 at 3:53 pm
You may have a fungus infection?Do a search on — dr sircus+sodium bicarbonate+melanoma
here is a prior posting on this board
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- May 16, 2019 at 4:53 pm
Such B.S. Gene, just when I thought you were giving up the “dark side of the force” you have gone back even deeper this time!!! -
- May 16, 2019 at 5:24 pm
So tell me Ed just what credentials do you have?What is your solution to this problem?
where is the evidence that I am wrong?
If you don’t have a solution then just shut up!
This board is meant to help other and you don’t
need to comment (wrongly) on every post!
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- May 20, 2019 at 4:31 pm
Interesting just prior to this I was drinking chaga tea soucred wild from birch trees in vermont. I would hate to think that could be a possible source of a fungus infection?
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- May 16, 2019 at 11:46 pm
I am sorry for all you have dealt with and continue to face Twhite. Melanoma sucks great big hairy stinky green wizard balls and can do anything anywhere in any time frame. Sorry. What you do is obviously up to you. Choosing our route to care is very personal. There are still options out there for you. There are trials and treatments working with CAR-T and TIL therapy available. HDAC is still out there. PANRAF inhibitors. CDK-4/CDK-6 inhibitors. Here is a link to recruiting trials for Stage IV melanoma:One thing I would definitely pursue if I were in your position would be extensive tumor testing. Melanoma patients have occasionally found successful treatment with that process. Some even being treated with things like meds usually used for HER-2 breast cancer patients among other things.
Hope this helps. I wish you my best. Celeste-
- May 20, 2019 at 4:34 pm
Celeste thank you. I have been gene sequenced and spent 9 yrs working with drs at memorial sloan kettering been on a few treatments including a trail but am always looking for anything that will help thank you again
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- May 17, 2019 at 4:36 am
So sorry to hear you are dealing with this too, you are not alone!
My mom also found out her cancer is back in January of this year. Her original tumor site was external, on her lower left leg & then lymph nodes in her left groin.
Tumors are all over now, from spine to all major organs, excluding heart, and new brain mets as of April.
She also has diffused interstitial infiltrative pattern of lung metastasis, and pleural effusion. Mostly her left lung. She’s had the lung tap 2x (pretty extensive amount of fluid)and now also has the Pleurx drain. At first the fluid was dark and winey looking (when she had an infection) now more yellow-beer colored (no infection.) She’s been told she will have the drain for at least a few months, draining weekly.
As if cancer isn’t bad enough already, the frequent lung issues have been what feels like a huge set back…but she is fighting.
You are the first person I’ve come across with many similarities as my mom’s condition., it’s scary and I’m sorry you’ve been fighting this battle for so long. I hope you keep kicking cancer’s ass as well! You got this! Many prayers, good vibes and positive thoughts headed your way.Lily
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- May 20, 2019 at 4:28 pm
Thank you Lily and I am sorry to hear your mom is going through this too. Yes your mom and I do have similar diagnosis I ahve been fighting this for 9yrs and will keep going as long as I can and your mom I am sure will too.
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- May 20, 2019 at 7:24 pm
Wow. You have had a time of it. In addition to what you are and have been doing I hope you also have a palliative care member on your team. Having someone advocate for your pain management needs while you are in (or out) or therapy may be of great help to how you navigate this next chapter. It doesn’t mean you are weak, but it could mean that you’ll be more comfortable while being strong.
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