I was diagnosed in September ‘18 with Stage 2b. Surgery to remove the primary tumor on my back in October. SLNB negative. December brought a satellite tumor 6” from the primary and halfway to my lymph nodes under Left arm. I had Surgery and 5 rounds of radiation on both places on my back. Opdivo - 2 treatments but then liver enzymes went nuts, and I took steroids.

May results on quarterly CT scan showed a few small lung tumors and a small tumor near the other 2 sites on my back, and some surgical changes/possible tumor or lymph node under left arm. Fell apart when they read my CT scan report to me in my oncologist appointment. I was not prepared to hear that I was now fighting Stage 4 melanoma. A dermatologist told me 1 year ago that the spot on my back was keratosis and “nothing to worry about!” He sprayed liquid nitrogen on it and sent me on my way!! Im still in shock that I got diagnosed with melanoma 7 months ago!!

Had back tumor removed 10 days ago. Had 1st treatment of Yervoy 1 week ago and am feeling fine so far. Scheduled for #2 in two weeks.

If you have had durable response to Stage 4 with immunotherapy, I would love the encouragement. I’m BRAF negative. Nodular melanoma was my primary. Being treated at MD Anderson - grateful to live an hour away! I handed my fear over to God and am trying to be brave and positive. I’m 60 and have been incredibly healthy my whole life., never had any surgery or hospitalization except spent 2 days in maternity wing after my daughter was born. I ‘m think I’m in shock. None of this feels totally real some days. Is that normal?

Blessings to all. So glad I found this site!
Junie

Well the radiation oncologist really gave me hope when she said we may have options!!
The SRS she said has recently come out and I may be a candidate for it. It pinpoints multiple lesions at the same time and could give me a little more time before they would have to do the whole brain. 3, 6 months to a year. All of those time frames work for me!!
My case is on a panel review Thursday, I will know Friday if they will be able to do it.
Fingers crossed, prayers sent!!

Hi Everybody,

My partner was diagnosed with melanoma in 2017. Tumour in his left foot, 2.2mm, Clark IV. It was surgically removed with good margin in October 2017. At the same time some lymph nodes were removed from inguinal and popliteal areas as part of the SLNB.

About a couple of months ago this year he discovered an enlarged lymph node in his left groin area. PET/CT scan showed:

Hypermetabolic lymphadenopaty is identified within the left external iliac region. The largest lymph node measures 5.2x3.9cv. This node is markedly hypermetabolic.
Hypermetabolic lymphadenopaty is identified within the left inguinal region. The largest lymph node measures 2.8x2.4cm. This lymph node is markedly hypermetabolic.

It looks like it hasn't spread anywhere else (brain MRI also came back clean). We had to deal with ruling out a suspicious spot in his right foot, which turned out to not be a tumour, which delayed everything by a month. Our oncologist's opinion is to proceed with a radical lymphadenectomy in the left groin area, and then likely Keytruda.

We've been reading various research and studies trying to understand the implications of the surgery better, and we are worried about lymphedema and the high morbidity rate (literature suggests 50%, the surgeon told us 30%, which is still high). So we are now facing a question - do we want to proceed with the surgery, with the risk of possible complications taking away whatever precious time we have left? Or should we not do it, and just start on immunotherapy and possibly something else?

Some other considerations:
- There are several studies that show CLND not having significant benefit for OS. Our situation is different, since he's well past the point of CLND, but it's still something to consider.
- If there are complications from the surgery, this will delay any other treatment.
- If we go ahead, and the surgery is successful, it's still not a guarantee it won't come back.

So this is where we're at. We are not sure whether to proceed with the surgery. My partner values quality of life over length, and my role is to support him in whatever decision he chooses to make, and to ensure that we have as much information as we possibly can. The surgery is tentatively scheduled for next week. We are hoping to get a 2nd opinion and another PET/CT scan before that (in case it spread elsewhere). Now my questions:

- Has anybody here rejected a radical lymphadenectomy? What was your experience like?

- If we decide not to go with the surgery, is there something else we could try on those lymph nodes? Radiation? T-VEC? I've been trying to find any info on specifically T-VEC as an alternative to surgery, but typically they talk about using it when it's inoperable - but it seems the criteria for considering something inoperable could also be when the surgery would create significant risk and potentially delay adjuvant therapy. Have there been cases of T-VEC being offered as an alternative to lymphadenectomy?

- Are there any other treatments or trials that could also be considered as an alternative to lymphadenectomy?

And just any thoughts or considerations on this would be greatly appreciated. Thanks!

Ryan

Hello everyone

I noticed a small pinkish coloured pimple on my middle upper back maybe months ago and dismissed it as such. I few nights ago I examined it properly as it felt a bit more prominent/ elevated and showed it to my wife, who said something like, 'ooh' and then quickly said, 'oh its nothing', when I started to look worried. Of course I immediately started looking at doctor google (I know I shouldn't) and came across 'Nodular Melanomas'. In fact, the paper I read was aimed at advising dermatologists and medical practitioners on how many MNs often look like a benign condition and can lack pigmentation and do not necessarily conform to the ABC scale, and so are often dismissed. I've also heard that echoed in many of the posts and experiences I've read on this site. Admittedly, many of the images posted on the net of NMs and Melanomas look somewhat worrisome but there's also a good few that look like simple moles. blood spots, boils, cysts, etc. The pink variety especially just looks like a harmless bump. I'm a natural born worrier and spent a very anxious and sleepless night and expect more. I saw my GP this morning and showed it to her, it felt and perhaps looked a little more prominent today, I have been poking it. She had a good look and said she wasn't at all worried as it was relatively soft, moveable and wasn't asymmetric. I mentioned what I had learnt online about the deceptiveness of NMs and she then offered to refer me to a dermatologist, mainly to put my mind at rest.

I'm not very good at compartmentalising stuff like this (who is?) whilst waiting all the days/weeks/months between the referral, Derm appointment, biopsy and who knows what else? Given the nature of how aggressive and fast developing this condition can be I'm think I should just go and present myself at an A&E (emergency) in a hospital that has a dermatology clinic. The (slightly) greater part of me thinks that might be silly.

Anyway here's a few pictures, maybe someone has had experience of similar?

Thanks for reading

http://u.cubeupload.com/JS_123ZZ/thumbnail.jpeg

http://u.cubeupload.com/JS_123ZZ/thumbnail3.jpeg

http://u.cubeupload.com/JS_123ZZ/thumbnail2.jpeg

Scans/Onco say tumor has increased in size. Onco said it may just be the treatment causing it to enlarge. (Ipi/Nivo)
There was an additional lymphnode that lit up a bit, as well but no other signs of spread..
Doing number 3 treatment on Friday and starting 20 days of radiation - Mon thru Fri for ten minutes a day.
Anyone do the same? Any side effects from radiation- the combo of Ipi/Nivo have been a bit harsh at times.

Well it seems neoadjuvant therapy worked very well for me. All 34 lymph nodes, including the original positive one, came back negative for melanoma!!!!!!!

I’ll start Opdivo after a few more weeks of healing from the neck dissection surgery.

Fingers crossed this type of result persists in the clinical trial and the community will have a new option.

Hello Melanoma Family!!!
I will scroll down reading posts from "Forum Friends' who have helped me these last 2 years!
I am happy to see Bubbles and Melanoma Mike still posting and will read about others.
Diagnosed Stage 4 May'17. 3 of 4 combo cocktail Opdivo/Yervoy liver enzymes: hepatitis
d, 4 months of Prednisone. Started Opdivo maintenance Jan '18. I still get 1 mg (90) infusions
every 2 weeks at Kaiser Woodland Hills. with bloodwork several days before. Pet Scans every 3 months, haven't had brain MRI in a year, I had 5
within a year tho. After 2 years of the same oncology nurses they are amazed that I am the lowest dose
of Opdivo they have administered to any patient. Dr. Wang said I was his first patient to get such a low dose.
Worried me initially. \
Just had latest Pet scan report: still NED!
Had lung mass, lymph node in armpit, groin, mass in chest, by pancreas-7 total that could be seen.
Dr. said still Stage 4. But tested positive for the what I call mutant gene ha! and can get targeted therapy and radiation etc if necessary going forward.
72 year old grandma of 6. I take Sadie my daughters labradoodle to Dog Park. Have been on 3 cruises in last year. I have a lot of arthritis and use a cane now.
Short term memory is bad. Was referred to Palative Care. Trying Retalin to see if it will help with fatigue. Osteoarthritis, takin glucosamine for it.

Sat by a patient on my last treatment, over 80 years old, his bladder and kidney cancer gone.
His wife hospitalized but ok with intestinal problems just finished all 4 combo treatments. Melanoma tumor on leg shrank,.
Seems like those that are fortunate to have all 4 combo treatments do suffer some stronger side effects.
My worst ones was the brain fog and rashes.
Again thanks to all that have helped me with well wishes, advice etc these last 2 years. You gave me hope! (now I will scroll to see how my (forum friends are doing)
Blessings, Sharon