MPIP: Melanoma Patients Information Page

The MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

The information on the bulletin board is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

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JBM629's picture
Replies 3
Last reply 6/1/2019 - 2:35am
Replies by: JBM629, Rocco, Sharon93065

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

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Anonymous's picture
Anonymous
Replies 0

Any vulvar melanoma patients in this group?

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Happygal's picture
Replies 9
Last reply 5/31/2019 - 10:04am

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!!

Tyais

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sami210's picture
Replies 4
Last reply 5/31/2019 - 4:21am
Replies by: sami210, obtu.bt, Tracyyy

Hi All,
I'm a long time lurker but love this forum so much. The amount of information and support you all give is amazing!

I was first diagnosed in 2010 mole on my left arm.
2013 found lump under left arm. Melanoma confirmed. Lymph nodes removed.
2017 routine CT scan found melanoma in lymph nodes in my chest. Not operable. Began IPI/Nivo.
Lymph nodes flared up then went back down stable for over 2 years.
May 2019 CT scan shows original lymph nodes stable. Inflammation on my chest that the radiographer is sure isn't melanoma however the lymph nodes next to the inflammation are slightly enlarged.
I'm Braf positive. My oncologist has decided to repeat the scan in 8 weeks!! She has also started talking about moving to Braf drugs if the the scan comes back with progression! I can't believe this I really though over 2 years stable I might have a chance of staying with my girls.
She asked me if I'd been feeling unwell, but I haven't. Ive just started exercising after 20 years and i sometimes feel a bit wheezy afterwards but haven't been unwell. Since starting Immunotherapy and getting over the initial problems i've been in good health.

Any advise would be greatly welcomed.

Thank you all

Sam xx

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scnnr's picture
Replies 13
Last reply 5/30/2019 - 10:21pm
Replies by: scnnr, Bubbles, Anonymous, SBailey, Edwin

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

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Anonymous's picture
Replies 7
Last reply 5/30/2019 - 8:09pm
Replies by: Chappie, Anonymous, Janner

I have a friend who is a breast cancer survivor.  She said it was very important not to cut through the tumor, or it can spread the cells.  is this the same with an early stage melanoma?  It seems it would spread it, wouldn't it?  Online I have read numerous times where melanoma has margins involved or the tumor was only partially biopsied.  I worry that someday they may say this does indeed spread the tumor. 

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PaulieB's picture
Replies 4
Last reply 5/30/2019 - 10:35am
Replies by: PaulieB, Lucygoose, Bubbles

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

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SRVilly's picture
Replies 10
Last reply 5/29/2019 - 10:57am

Hello all!

I hope you all had a wonderful Thanksgiving and are enjoying the holiday season.  

A little back story...I was dx in Dec. of 2017 with Stage 4 with mets to Liver.  I started bi-weekly treatment of Opdivo only in Jan. 2018 (Opdivo only due to history of coliits).  I have had little to no side effects (except for my thyroid taking a dump in June), and I have had a complete resolution of all liver mets in my last 3 PET scans. However, about a month ago my Red blood cell count and Hemoglobin have been taking a nose dive. I've been on Iron pills since and my onc ordered an endoscopy and colonoscopy for last week.  The GI Dr. said my stomach was clear, with no signs of ulcers, and my colon was clear with no signs of active colitis. He took some biopsies just to check if there was any microsopic signs, but he didn't think the anemia was due to anything stomach or colon related. I have another PET planned for Dec. 14th to take another look around.

I have been reading about side effects of Opdivo and anemia is not a well documented side effect.  I was wondering if anyone has had any anemia issues due to the opdivo and what solutions helped resolve the issue.  I have an appt and infusion (if counts are back up) this week and I know we will go over this, but I always like to be a little informed if there are any issues before we meet.

As always, thank you so much for your help and well wishes . This forum is an invaluable resourse that I rely on daly.

Have a wonderful week.

SRVilly

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Carlsbad317's picture
Replies 4
Last reply 5/29/2019 - 9:59am

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.

Hanlon

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bball's picture
Replies 9
Last reply 5/28/2019 - 10:24pm

Has anyone tried Gcmaf to increase immune system

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Lucygoose's picture
Replies 12
Last reply 5/28/2019 - 6:49pm

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.

Lucy

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Northgirl's picture
Replies 2
Last reply 5/28/2019 - 3:16pm
Replies by: ourvan, Lucygoose

Hello,

I found a large and new mole on my breast after I was pregnant in 2017. I had my family dr look at the mole and she recommended I take a picture of it.

I forgot about the mole for two years, I stumbled on the original picture when I was looking at pictures of my son.

I took another picture and showed the comparison to my new family dr. He is going to remove the mole this week and send it for biopsy. Here is the picture:

https://photos.app.goo.gl/uEmgiLEqc8yL6me97

I am going through a lot of anxiety, because I left this mole for two years. Has anyone had a similar experience, and what was your prognosis?

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Sharon93065's picture
Replies 7
Last reply 5/28/2019 - 2:20pm

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

Sharon, Simi Valley

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Ellenb's picture
Replies 17
Last reply 5/27/2019 - 7:26pm

Hello, Everyone,
Thank you all for the support you give on this site. I’m brand new here. I am waiting for the results of the Castle Test-tissue was sent out a week ago. My doctor does not want to discuss pretty much anything until we have the results. I’m the kind of person who likes to prepare ahead of time. Could anyone please share with me what has happened to you once you received your results? Thank you so much.
Ellen

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KellyH's picture
Replies 7
Last reply 5/26/2019 - 12:49pm

Today was my son’s last Opdivo treatment!!!! One year of treatment done with minimal side effects, mainly just fatigue but he made it!!!! He had a brain MRI and CT scans of his neck and chest last week, all clean, so he is officially one year NED!!!!! All great news I know, but today I find myself so excited that we are at this point but yet so afraid of the just wait and watch now. After his treatment was done today, and they removed his IV, I could not help it, I started to cry. Ridiculous I know.....but this year has been such a roller coaster of emotions and I know it is far from over.....this road is long.
My son turned 18 during this last year and started college. It’s been a little rough on him but he did it., and just short time ago this diagnosis would have never allowed that. We are extremely blessed and I am forever grateful.
So now I am going to try to enjoy the summer as worry free as possible and savor this moment. After all this is a big victory!!!!!

Prayers and love to all!!!!

Kelly :)

A Melanoma mom ❤️

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