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Posted By
TimCT
2/7/2020 3:04pm
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Replies: 10

Hi All,

I was just diagnosed on Monday evening with metastatic melanoma. A little of my backstory before a couple questions:

Since August/September I've been having non-specific symptoms on and off: fatigue, chills, body aches, dry & tired eyes. At the same time, it felt like I had pulled a muscle in my armpit. After rest, both issues subsided after a couple days. But they would come back. Then I felt a sore lymph node in my neck that had swollen up, but it went back down. Then my armpit was sore again and it occurred to me that it wasn't a pulled muscle, but also a swollen lymph node. Again though, lymph nodes went back down, symptoms subsided.

In November I had enough of not being able to shake whatever this was so I saw my GP, who sent me for 31 separate blood tests over the course of November/December. Nothing came back as out of the ordinary except that I tested as ANA positive. The upshot of all the tests was that I was being sent to see a rheumatologist, because of the ANA positive result. The bloodwork also showed that I had an EBV infection sometime in the past, so perhaps that had been reactivated. The prescription was rest and vitamin C until the rheumatology consult.

About 3 weeks ago, my neck started to swell under my left ear, and it was quite painful. As the swelling increased I could feel the pain behind my left eye, up the back of the left side of my head, on the left side of my jaw, in my left ear. I called my GP to report my new symptoms and was told the doctor would call me back if he had any questions. A week later, his PA called to say wanted another CBC.

I had been voicing my frustration all along to my wife, who is an OR nurse. She had gotten fed up enough with my complaining to mention it to a surgeon that she works with, who asked her if she wanted him to order an ultrasound for me. She did, and the next morning I was having an ultrasound of my neck, which showed a bunch of enlarged lymph nodes. The day after that I was in his office for a fine needle aspiration, and the day after that I was at the hospital having the largest lymph node removed for biopsy. I think the surgeon was thinking this was going to be lymphoma, and we were all very surprised to hear on the following Monday (2/3) that the pathology report had come back and this was melanoma.

On Tuesday I was in an oncologist's office who gave me the rundown on the immunotherapy meds available, response rates, side effects, etc. He also ordered a PET scan and a head MRI for Friday the 14th, and a visit to a dermatologist on the 25th.

So after a long time of seemingly doing nothing, there has been a flurry of activity over the past week and a half that has resulted in this diagnosis.

I have a couple questions. First, there is no obvious primary site. The surgeon who removed the lymph node looked me over fairly thoroughly and didn't see anything that looked abnormal. Will a PET scan show a lesion on the skin? I had an eye exam in September as well, and they didn't see anything of note then, either. Is the PET the be all/end all for determining all the places the cancer is?

Second, its been a long week of waiting and trying to wrap my mind around this diagnosis, and it'll be another long week of waiting for the scans on Friday, and then however many days until they're read and communicated back to me. Its sorta like this is the calm before the storm - is there anything I should be doing physically to prepare for treatment?

Thanks for listening, and for any help/advice!

Tim

Anonymous - (2/7/2020 - 6:01pm)

I tell everyone, 'the country club killed me' meaning some 50 years ago I went summers at the pool or running around bare waisted. I was diagnosed after routine exam by dermatologist who found suspect mole on my back, a place I couldn't see. At the age of 63.

since diagnosis and various scans and surgeries my time line is a little messed up, but on two occasions I got a small lump in my axial(armpit, and believe me it took some time to figure out what surgeon was referring too when he said 'axial") OPPOSITE of where he removed 4 lymph nodes. I thought. OMG, his surgery knocked the melanoma loose and its coursing thru my body. Turns out the lumps went away and were probably just a reaction to changes in my lympathic system. To wit; I am down 4 LN's. My thinking is they are there for a reason and if their gone something has gotta change.

as to where your initial injury was, I cannot say. but everyone , that is the pros', agree that melanoma is related to sun exposure so I would suspect any part of you that had prolonged exposure or maybe one intense exposure. I recall a time in my late teens when I was building forms for a foundation. Your bent over at the waist for 8 hours. That day I got wicked sunburned like I had never been before;. so I wonder if that might be the exact moment the wheels of melanoma were set in motion. Its an interesting thought.

as for treatment prep, well I continued to drink and smoke cigars,. I stopped exercising because of disruptions of surgeries, and ate a lot of junk food , thinking if weight loss is a problem, then I ought to bulk up. that was a nice delusion until I started monotherapy and haven't lost and ounce. so I am back to healthy eating and exercising.

the pro's never told me that I needed to do anything by way or preparation.

You have found a good resource here. My docs , I think. are good, but I found someinformation is left out of discussions with them. They assume you know things you don't and you don't always know the questions to ask till you have left your appt. This is an ace resources to fill in gaps in your knowledge.

Linny - (2/7/2020 - 8:53pm)

So sorry you've had to join this club.

In 2010 I was diagnosed with an unknown primary. My culprit was a swollen lymph node in my left arm pit. LucyGoose, who's also on this forum had an unknown primary and she had lymph nodes removed from her neck in 2019 and was treated at MD Anderson. She's doing well. You may want to touch base with her.

A PET scan will not be able to show a lesion on the skin. The skin exam you have scheduled for the 25th will be VERY thorough to confirm that you have an unknown primary.

Less than 10% of all melanomas are unknown primaries, so they're relatively rare. Since they are rare, you should make sure you are being seen by a melanoma specialist at a major medical establishment that has a department dedicated to melanoma.

The head MRI is not fun because in order to keep your head from moving, you have to wear this cagelike thing on your head. After they strapped that thing on my head I just kept my eyes closed until the MRI was done.

Having an unknown primary sucks because you are Stage III right out of the gate. However, having an unknown primary also means your immune system recognized the melanoma and was fighting it, hence the swollen lymph node(s). One theory behind unknown primaries is that there was a melanoma lesion on your skin that your immune system zapped, however some cells escaped into a lymph node where your immune system continued fighting.

Stage IIIB, Unknown Primary; 1 positive node in left axilla. Diagnosed December 2010.

Linny - (2/7/2020 - 8:57pm)

Oops! I made a mistake -- Lucygoose was treated in Atlanta, not MD Anderson

Stage IIIB, Unknown Primary; 1 positive node in left axilla. Diagnosed December 2010.

Bubbles - (2/7/2020 - 9:22pm)

Hi Tim,

Sorry you are here, but glad you have reached out as this forum is filled with smart caring peeps. Linny gave you an excellent breakdown of unknown primaries in melanoma. I agree with that explanation of your probable stage and need for a melanoma expert (or at least an oncologist who sees lots of melanoma patients) as well. Stage III melanoma patients have both immunotherapy and targeted therapy options (though the ipi/nivo combo is approved for only Stage IV patients currently). Here is a link to a primer I put together of current melanoma treatments that may interest you: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melan...

Hope this helps. Melanoma is not fun. But there is hope!!! Ask more questions as you have the need. I wish you my best. Celeste

TimCT - (2/8/2020 - 11:24am)

Thanks so much guys! The oncologist offered to get me set up with Harriet Kluger with Yale. Geographically, traveling for treatment in the Yale group is much closer to home and I do believe she specializes in melanoma.

I'll keep you guys up to date. Thanks for all the info!

Tim

RichInLife2 - (2/8/2020 - 11:45pm)

Hi Tim,
I’m a patient at Yale/Smilow and I can tell you that you are in good hands. My doc is Mario Sznol, but I have also met with Dr. Kruger and I can tell you that patients that I know who have her as a doc love her. Having said that, don’t be afraid to seek a second or third opinion, no matter who you see first.
As for prepping for treatment, all I can tell you is to treat it like a bad cold. Rest, fluids, and a varied diet. Also, I know that this is the scariest time for most people because there is so much that’s unknown or undecided. Once you find out for sure what you’re dealing with and come up with a treatment plan it will get better.
Good luck,
-Rich

TimCT - (2/9/2020 - 3:21pm)

Hi Rich,

My aunt has been fighting melanoma for 30 years, and her doctor is Mario Sznol as well. I agree, I think I'll be in good hands with that group!

Tim

TimCT - (2/13/2020 - 3:34pm)

Hi Rich,

I'm scheduled to see Dr Sznol on Thursday of next week. Scans and MRI tomorrow, so its sorta my D Day. Everyone speaks very highly of the whole group at Smilow, so I feel good about that.

Tim

Tsvetochka - (2/10/2020 - 1:34am)

Unknown primary here, too. I've been kind of surprised that they just accept that. No talk of a dermatologist anywhere at all, so far. I'll have my first PET scan on Wednesday, and I was curious if that could find a primary, so I'm glad you asked.

Linny - (2/10/2020 - 9:57am)

I was diagnosed in December 2010 after and enlarged lymph node was removed from my left arm pit. After my surgeon was given the results he gave me a skin exam and found nothing. On my second visit back, it was clear that he had consulted someone about my case because he took a look at my hands and finger nails and found nothing. He was just a general surgeon and referred me to Johns Hopkins in Baltimore, which then took over. I had a CT scan with contrast done at my local hospital that showed there was no suspected melanoma anywhere else in my body. At my visit to the melanoma department at Johns Hopkins I was seen by their melanoma dermatologist and a melanoma surgeon. At the visit with the dermatologist there, I was told that they were going to go over every square inch of my body and if a suspicious lesion was found, they were going to remove it. Not only did the doctor look me over, so did several of his students. Having medical students look me over seemed a bit over the top, but in retrospect, they were all looking to score points with the doctor so they were very thorough, which is a good thing with a suspected unknown primary. No suspicious lesions were found. The next step was seeing the surgeon, who told me they were going to remove the rest of the lymph nodes in my left arm pit after she gave me another skin exam.

Bottom line is finding what may be a primary on your skin is done visually. It's all the more reason to be seen at a medical facility with a department and doctors dedicated to melanoma. They deal with this stuff on a daily basis and know what to look for.

.

Stage IIIB, Unknown Primary; 1 positive node in left axilla. Diagnosed December 2010.