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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rabbits68's picture
Replies 5
Last reply 2/11/2017 - 10:53am
Replies by: rabbits68, Bubbles, debwray

A few weeks ago I started with groin and abdominal pain, this is after 8 treatments of Keytruda.  Scan showed existing tumors stable but new involvement with 3 Lymph nodes.  One is quite large and is supposedly the source of my pain.  My doctor does not consider Keytruda a failure at this point so we are continuing with infusions. I just finished 3 weeks radiation on the nodes and am still not getting the  relief I expected .  Am I expecting too much too soon?  Does anyone have personal experience to share?  Thanks Lisa

LisaG

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bing_bang_bum's picture
Replies 4
Last reply 2/12/2017 - 3:52pm
Replies by: bing_bang_bum, Janner, Anonymous

Hi all. Just wanted to say this site is amazing and I appreciate so much the information I've gathered from lurking. This is my first post.

Last week I went in for a full body check, with one mole I specifically had my eye on (a dark mole on my butt, the only raised mole on my entire body although I have tons of freckles). Doctor wound up doing two shave biopsies (said butt mole, plus another on my back that was benign). He called today with the results.

He informed me that he was glad I came in when I did because the mole on my butt was "almost/borderline melanoma." This, obviously, scared the living hell out of me so I asked him what exactly it was. It's a severe dysplastic/atypical melanocytic nevus. Upon my research, this doesn't seem like that big of a deal, and it seems it's pretty damn rare that any atypical nevus will, itself, turn into melanoma. Especially for me, since this is my only one. So I'm struggling to understand how that could translate to "almost cancer."

A couple questions for you all:

1. I am livid with the way he described the diagnosis to me. In my opinion, the word cancer should never have even been mentioned. Am I missing something? Is "almost cancer" even a thing?

2. He did a pretty deep excision for a shave biopsy; I have nearly half of an inch in diameter missing from my ass, and it goes a bit below the surface. But he said that I need to come in for a deeper excision. Is that standard for my diagnosis? Or is it something I should get a second opinion on? Or wait until it heals and just watch for a resurgence of pigment?

Thank you in advance for any help you can provide me with.

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youngann's picture
Replies 8
Last reply 2/10/2017 - 1:19pm

My previous scans showed a lesion in the breast - biopsy = negative, 4 nodules on the thyroid - biopsies = negative, and 5 pulmonary lesions.

I had my follow-up CT yesterday and 3 of the pulmonary lesions have resolved, the remaining 2 are unchanged. I'm taking that as very positive news :-)

Ann

http://www.cafepress.com/daybreakdesigns

Home of the original "Crappy Shirt"

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Nicklindner's picture
Replies 9
Last reply 2/10/2017 - 7:05pm
Replies by: Nicklindner, Mat, debwray, jennunicorn, Anonymous, Hukill

Started throwing up blood this morning. Went right to my cancer center and got labs taken. Liver levels are high. Getting an endoscopy to figure out what is going on. Has anybody had these side effects to ipi/nivo? Supposed to get my 4th dose in a week but not looking great for that. 

Thanks for any help. 

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Supportivefiance's picture
Replies 9
Last reply 2/14/2017 - 4:00pm

So... Life has been a wild ride. My fiancee (26) and I got engaged last July. Date is set for July 22nd. We end up losing our beautiful Golden Doodle tragically a few weeks after our engagement. After having 3 Drs. refuse to biopsy her mole, I finally pushed her into getting it removed. Well... you know the story. She was diagnosed Ib 0.9mm breslow, clark IV, miotic 6, nonulcerated, Superficial spreading... Margins clear on original and I believe on the WLE as well. We were told she was clear nodes, but path called back and claimed they found 4 microscopic cells. (she was a little vague on this and I haven't seen the whole report). Onc. Surgeon said that she would be a soft 3a diagnosis. They took 2 nodes and I believe the SLN was the one with the melanoma cells. The surgeon is recommending against CLND as she has only seen 1/71 patients ever have other positive nodes. Right now I think we are leaning that way. I really want her to get on yervoy and anything else you can do at this point in 3a. Her labs have looked good, but she has not had a PET scan. She will meet with the Melanoma specialist sometime next week. She lives and works at Mayo in Rochester, so I know that she is at a good place. If anyone could offer advice or encouragement it would be helpful. Thank you all so much. I hope you all the best in your treatment! 

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Bmine102793's picture
Replies 2
Last reply 2/9/2017 - 1:51pm
Replies by: debwray, Anonymous

So fiance got surgery to have a growth on forarm removed and armpit lymphnode removed biopsy came vack positive for melanoma in both abd he was diagnosed stage 3 because of lymph node involvement. Had ct scans and mri done and all was clear and the syrgery actually removed all that was visible on ct scan. As precaution we were reffered to melanoma specialist at clevland clinic for second opinion which we see next week we figured they would prib do opdivo therapy but we just got another call for a same day app wuth a radiation oncologist. So what does that mean? Maybe radiation and not opdivo?

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Hriggenbach's picture
Replies 8
Last reply 2/9/2017 - 3:45pm

Has anyone had there femoral artery cut and repaired during there groin lymph node removal?

Mine was cut and had to be repaired. I spent 5 days in the hospital than 6 days in a nursing home, I was then sent home in a wheelchair with nerve damage from my knee to my ankle and I've lost all feeling in my thigh. I have not been able to start my cancer treatment yet because I have so many  surgical wounds. My dr said my lymph node was attached to my femoral artery and it was nicked so the vascular surgeon removed a 3 inch section and reattached my artery. They are tell me it is somewhat normal I'm in extreme pain and I'm really questioning if this is true? 

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Hi, 

Jennybaum has posted below asking for advice AND a specialist recommendation for her mum as treatment so far has not been as would be expected. Has anybody got personal recommendations please ?

Many Thanks

Deb

 

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JennyBaums's picture
Replies 5
Last reply 2/9/2017 - 11:58am

My Mom initally had malignant melanoma removed by dermatologist (2.86 deep) in September 2016, then had wide resection without sentinel node biopsy. The path report showed no evidence of melanoma in the surrounding tissue. The oncologist suggested a certain type of radiation (IMRT) as treatment however the insurance would not approve it and we have been fighting them for 4 months. it was suggested by her primary physican to get another Oncologist to help fight with the insurance, the 2nd Dr. says radiation should have never been an option and we need to get scans, blood work, and possible lymph node re-section and immunotherapy treatment given the results. I feel like my mom has fallen thru the cracks and has been waiting 4 months with no treatment or testing. At this point we are really not sure which Dr. to believe and need some advice. Also we are in Las Vegas, NV so if anyone has any refrences for good dr.'s or support groups for her I would be forever grateful! 

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Bubbles's picture
Replies 10
Last reply 2/10/2017 - 2:55pm

Been thinking of you every day!  Hope you have gotten your stent and are feeling a bit better in that regard. Fingers crossed for your getting to sign on to your trial tomorrow.  Big hugs to you and yours!  love, c 

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Anonymous's picture
Anonymous
Replies 1
Last reply 2/9/2017 - 9:49am
Replies by: Fen

I had surgery on Tuesday to remove the melanoma and 2 lymph nodes. The lymph nodes came back benign. 

Thank you for all the support here. I have been reading along, and I am just amazed at how smart and brave you all are. 

I hope this beast never returns to me, but it is so comforting to know this group exists. My step father passed away from melanoma in 2004. I pray for all of you that they find a cure for this type and all cancers, soon.

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newmanmark's picture
Replies 10
Last reply 2/9/2017 - 9:33pm

Hello,

I have been a stage 4 patient since 2012.  In December 2016 I started on the IPI/Nivo combination and made it through 3 rounds.  I am due for my 4th round next week.  However, this week I developed a headache that persisted for 5 long days.  Yesterday I had bloodwork done and an MRI.  They confirmed that the pituitary gland is swollen.  The oncologist and endocrinologist agreed that it is worth a shot to save the pituitary with high doses of prednisone that will be tapered down every 5 days.  In the meantime I will not be receiving treatment.  

The likelihood of getting the 4th infusion if Ipi is small as they believe it will only damage the pituitary further.  The good news is that I should still be able to continue on the Nivolumab.  I haven't had a CT scan yet to determine the response to treatment.  Hopefully the tumour in my pancreas has responded.

I was wondering if anyone else has a similar response to this treatment and were you able to continue on with Nivolumab?

Thanks
Mark

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laulamb's picture
Replies 10
Last reply 2/8/2017 - 11:13pm

Ok fellow Melanoma Warriors ... I have my 3 month follow up scan tomorrow.  Had CT scan in November when an indeterminate 4 mm left lower lung pulmonary nodule was seen.  Diagnosed Stage 3a April 2016 ~ completed 4 doses of ipi at 3 mg and did 1 maintenance dose (will continue maintenance doses for a year).  Please keep me in your thoughts, send good vibes, prayers, do a dance ~ whatever it takes to make sure this hasn't grown or multiplied!! 

Peace and Good!
Laura

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Anonymous's picture
Anonymous
Replies 4
Last reply 2/8/2017 - 3:05pm
Replies by: D1983j, Sophietx, Janner

I've had a stage 1 melanoma last year. Everything has been fine. Today I went for my 3 month check and of course had to get a biopsy. I thought I might be lucky and not have to get anymore lol anyway she said she wasn't worried but since she's would be releasing me for 6 months now and it was the only mole I had that looked different than my other moles to remove it. She also mentioned to prevent it from being something later. The mole has always been there and it is darker than my other miles but not anywhere what I had before. It's never changed or grown. I guess I'm trying not to freak out. I'm assuming my worry should be less because of everything she said and she basically just offered it to me as more precaution but still the worry is there. Thoughts! Thanks!

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LindaSR's picture
Replies 6
Last reply 2/14/2017 - 1:12pm

My husband has been on the combination targeted therapy for nine months.  His October PET scan showed all mets gone except for two and those two significantly reduced.  His most recent PET scan last week showed a new hotspot in T9 with a score of 18.5 (in addition to 10 mets in brain found on MRI after a fall).  Our onco wants to stay on the combination and wait 3 months for another PET scan as he "does not want to give up on the targeted therapy yet."  I do not think this is wise and want to start him on combo. Ipi/Nivo immunotherapy immediately if not sooner.  If immunotherapy works it will also work on the brain mets (he is currently on day eight of wbr - i pushed for srs but onco said too many mets) Thoughts on if resistance is gradual or not and does it make sense to continue targeted therapy and wait and see.  I don't think melanoma is a wait and see cancer, it is a more aggressive cancer.  As far as having an oncologist who specializes in melanoma, I wish.  We live in BF west virginia and as it is travel 2.5 hours to Roanoke, VA to see oncologist.  No husband can no longer drive due to small seizure that occurred after his recent fall.  Any thoughts on resistance will be helpful.  I think I am going to have our onco. consult with Dr. Tarhini at UPMC at the Hillman Cancer Center for advice.  

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