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New to this. Stage 4 Metastasis to the lung

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New to this. Stage 4 Metastasis to the lung

Posted By
stacysue1961
5/20/2020 9:19pm
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Replies: 3

Where do I begin? PETRIFIED to say the least. Twelve yrs. ago I was diagnosed with a Choroidal nevus. A melanoma in the back or my right eye. I lost 90% vision in that that eye after surgery. I've been fine. Tumor has been flat for a long time.
I went for a chest x-ray August 2020 and a lobulated mass was found in the left lung. I went to Memorial Sloan (again) for more x-rays and a biopsy. Low and behold, Melanoma showed its fangs again.
Surgery was performed and, a wedge of my lung was removed. The surgeon couldn't remove it. Not only was the mass in the center of the lung but, there were cells along the plura of the lung.
My Dr. is Dr. Postow who is just brilliant and amazing..
I've been doing immunotherapy Nivolumab/Ipilmumab. My thyroid shut down (now regulated) and my liver enzymes are off the charts. Going for blood work tomorrow then cat/pet scan(again) Tuesday.

Initially I was just getting the Nivolumab but the last scan showed a bit more growth in the melanoma so, The doc. went for a more aggressive approach.
I don't think he is going to do the last combo. of meds b/c of its effects on my liver.
I know Melanoma is resistant to chemo. He said he has some things he may want to try. This is a pretty rare form of cancer. I've always been the type to be in control... I'm so scared !!! I'm 58. Just retired this past summer.
I'm doing all I can to stay positive. I know I'm in great hands. Dr. Postow told me about this forum.
I could use all the support I could get.

Stacy

Stacy

Hi Stacy,

So very sorry that you have the need to be here, but welcome. First and foremost, for folks in your shoes my first bit of advice is that they get themselves to a melanoma specialist ASAP! And in Dr. Postow you are already there!! Through his care and the options available in a melanoma center like his, I am certain he will put together a great plan of care for you! However, if you are a person who likes to study up - here is a response I put together for a person in need of melanoma treatment beyond the now 'standard of care' ~ https://melanoma.org/legacy/find-support/patient-community/mpip-melanoma... - where I wrote:

I am so sorry for all that you and your wife have endured and the things you still face. First and foremost, are you seeing a melanoma specialist? I mean, she has had a lot of good therapies so you may well be, but it definitely wouldn't hurt to at least consult with a Melanoma Big Dog if you haven't already. Here is a list I put together of some of the docs on the cutting edge: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2019/10/inter...

You seem very well versed in melanoma treatments. Your last line includes the treatment strategies I immediately thought of:

NKTR-214: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=NKTR

There is also this: https://melanoma.org/legacy/find-support/patient-community/mpip-melanoma...

anti-LAG-3: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=LAG-3

TIL - Here is a link to a prior discussion on this forum with lots of links to info within - https://melanoma.org/legacy/find-support/patient-community/mpip-melanoma...

CAR-T could be considered.

Here is a post I put together with the "new" treatments for advanced melanoma coming out of ASCO 2019 (includes NKTR-214, IMO-2125 [TLR agonist], TIM-3/PD-L1, TNF, and TIL): http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2019/06/new-st...

I would also advise tumor testing, though it seems that you have done at least some of that already, given some of the treatments you noted. There are occasionally melanoma patients - there are at least 2 on this forum - who are doing very well on drugs not usually employed for melanoma. One happens to be on drugs most typically used for HER-2 breast cancer.

_________________________________________________________________________________________________________________________________________________________

Clearly, some of this would not apply to you. However, it might allow you to read up about some next step options that you may want to talk to Dr. Postow about, or be better able to discuss them should they fall into the category of things he recommends for you.

Hang in there. I wish you my best. Celeste

Just saw that my first link wasn't working. So here is the list of melanoma experts I (with help from others on this forum) put together. Thought you might like to note that Dr. Postow was certainly included! https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2019/10/inter...

Also found that this link to the new treatment review out of ASCO 2019, so here it is: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2019/06/new-s...

They all work if you go to the link to the original response. Hope this helps. c

Hi Stacy, for what it's worth, I have had pleural nodules, thickening and fluid in one of my lungs since March 2019. Had thoracotomy in 2018 to remove melanoma of hilar node. Have been on Opdivo all along, and when nodules seemed to progress a little in fall of 2019, added Yervoy. All nodules are still very small, stable. Opdivo continuing. Not sure it's helping, been on it for over 3 years. Just wanted to let you know I've had this junk in my lung for over 1 year and no symptoms, no significant growth.
Read everything from Bubbles! MSK has a great reputation so I am sure they will give you wonderful care.