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.
- May 21, 2020 at 1:19 am
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.
- May 21, 2020 at 1:49 pm
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-patients-information-page/desperately-need-help#comment-133829 – 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:
There is also this: https://melanoma.org/legacy/find-support/patient-community/mpip-melanoma…
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/internationally-renowned-melanoma.html
- May 21, 2020 at 2:01 pm
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-stuff-treatment-options-and-current.html
They all work if you go to the link to the original response. Hope this helps. c
<p style=”text-align: center;”>Hi, my name is Karen. I have stage 4 metastatic melanoma diagnosed feb 2021. I am 64 and have never had a diagnosed melanoma on my skin, first appearance in the lining of my right lung, plura. I went to NYU Perlmutter, Dr Webber, to participate in a clinical trial with ipynevo and an additional drug. He said one of the masses was the size of an orange and my breathing was very compromised with constant coughing. After 2 and a half months it did not appear that i was responding and quality of life zero so the doctor started me on targeted therapy and I went back to Florida and am at UM Sylvester. I have been on it for 6 months. Bragtovi and Meltovi. The cancer has diminished significantly and so far has not spread further .</p>
- December 1, 2021 at 11:07 am
MichelleRHGParticipantHi 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.
- May 21, 2020 at 6:48 pm
Read everything from Bubbles! MSK has a great reputation so I am sure they will give you wonderful care.
- June 11, 2020 at 5:50 pm
Thank you so much for your input. I have not been receiving treatment for a month now. My liver enzymes were extremely high as a result of the immunotherapy.. I’ve been put on steroids and an immuno suppressant drug because my immune system became very active. The nodules have decreased in size thank god !! The doc is hopeful that I will resume treatment beginning July.
H, I am new to the forum. Where to begin?
- February 6, 2022 at 5:57 am
I have stage 4 cancer and have had it a different stage of my having my eyeball removed over 5 years ago. 2020 I had a liver resection and a year later the cancer us around the stomach and kidney areas. Did radiation which reduced the size of one of the larger masses and the immunotherapy Nivolumab/Ipilmumab has stabilize the existing growth of the existing tumors around my stomach area and there are no new growths as of 1/8/22. I do not qualify for the new drug that has been approved by the FDA tepotinib because my DNA is not compatible and in the coming days will be meeting with a new doctor to begin a new round of trial clinical protocols. It is a scary moment, but I don’t look like I am in stage 4 cancer and am able to do the stuff I always have done. If I can make it over the hump. I am told I may just be able to live longer. I go in to meet on the same date with the radiologist and plan to see if they will do a scan as I my left rib cage is protruding, and I feel some pain in my back area. I may be just paranoid I can’t help it as I hope it is not the cancer moving upwards and pushing the rib out. I did break a rib where it now hurts due to a severe general cold of which I am over so perhaps it is the rib just trying to heal. It is all new and scary.
I would say to the person who wrote her above question the two drugs that you spoke of did in fact help me but now I am going a different route which is okay with me I just want to rock and roll with the new round of treatment.
If anyone can let me know if you think my ribs are protruding is because of new growths let me know and or are just the result of a broken rib from coughing that is trying to heal.
EdwinParticipantI cracked 2 ribs in 2 separate falls. One cracked rib was in the front of my chest and the other one was on the right side of my chest. I had pain in a rib in my back due to melanoma in that rib. The cracked ribs made breathing painful. I felt pain in the rib with cancer, when I reached down to my bicycle down tube sift levers.
- February 6, 2022 at 1:55 pm
I don’t know why your ribs are protruding. Your doctors should be able to tell you why.
Thank you, Edwin, for your response. So far, I do not as of today’s date have melanoma in my rib, but I did have a rather large mass on the lower side near my kidney. Radiation reduced the size. I will ask tomorrow and hope the scan will show nothing.
- February 6, 2022 at 2:40 pm
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