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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Anonymous's picture
Anonymous
Replies 1
Last reply 11/21/2016 - 2:08pm
Replies by: Janner

I was approaching 1 year ned. Then i seen a small dot by original excision wle. Around 4 to 5 cm from original melanoma mole. Had it removed. Pathology came back melanoma in situ. Going for surgery next. Derm says she thinks its a new primary. My question is would i still be considered ned after the in situ removal. Cheers anon currently 3b stage

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CowWhat's picture
Replies 6
Last reply 11/25/2016 - 10:21pm
Replies by: CowWhat, Janner, debwray

Hi all. Thank you in advance for your forum contributions and caring advice. I've browsed this forum for a long time as i am extremely high risk for Mel.

First a back story:

I waa diagnosed 2 years ago with a very rare cancer syndrome called Cowden's
https://ghr.nlm.nih.gov/condition/cowden-syndrome

Along with the 2 other cancers ive had(thyroid + kidney) ive also had a phylloides breast tumor (even rarer).

I am covered head to toe in moles and have had over 30 removed. A few were dysplastic nevi, but none of the docs were concerned. This past Feb i had a full skin check at the cancer agency with 3 removed. All benign.

Anywho. Fast forward to last week when my new GP was looking me over and in a worried tone said i needed 4 removed asap. I came back 3 days later for 1 on my back and 1 on neck to be chopped.

The other 2 are on my legs and are not as urgent.

Ok, after stitching me he said to prepare myself for a WLE as the back mole was very dark, irregular and had signs of regression. I couldnt even see this mole as it was centered under my bra. It was not there in Feb.

To add....i have a 5cm breast lump jyst above where the Phylloides was removed. It cannot be seen on imaging not even MRI. Every doc has felt it tho. Only this GP is seemingly panicked and has ordered a biopsy soon.

Here in lies the rub: im not sure i want the WLE. My lifetime risk of MM is about 60%-basically inevitable. Breast CA is 85÷. Im spinning my wheels.

Ive had 8 surgeries since 2012. Not too interested in more.

So...help me decide if i should do the WLE if needed. It is unlikely to be scheduled before the new year anyway and we are still waiting on the bio pathology.

Thank you.

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GreenWally's picture
Replies 6
Last reply 11/21/2016 - 9:10pm

Ive been monitoring this forum for a few months. I guess it's my time to share. I was diagnosed Stage 3B. My primary was .9 with a mitotic rate of 1 on my upper back. The surgeon told me the chance of my biopsy testing postive were low, but not zero. Unfortunately, I fell on the other side of the percentages with one positive node with a few micromets. After a difficult decision, I opted for the complete auxiliary lymph node dissection. I was aware of decog and other studies suggesting a watch and wait rather than the CLD. As others, this whole experience was a mental challenge. I didn't think I could handle the stress of intense observation of the lymph node basin. I would always wonder, if I ever had a reoccurrence,if it was my failure to do the CLD that put me at a greater risk. The studies suggesting against the CLD were just not conclusive in the long term. I had to make the decision on what I knew at the time.

I don't have regrets. Its been 7 weeks. I have some nerve pain, but no lymphedema. I have full mobility and still go to the gym.

I opted against interfuron. The studies.I have read show it does very little for a year of flu like symptoms. The risk reward didn't seem worth it.

I have an appointment with my surgeon to decide a future scan schedule. I'm hoping for the best. I'm a patient st Mass General Melanoma Clinic.

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Anonymous's picture
Anonymous
Replies 0
rayofsun0777's picture
Replies 1
Last reply 11/20/2016 - 1:21pm
Replies by: Anonymous

I'm fair skinned, freckled and a strawberry blond. I am 38 and grew up in a time that a peeling sunburn was a badge of courage. Different times. When I was 16, I was burned very badly on my leg by an exhaust pipe. 3 yrs later an fleshy nodule appeared. It was removed and biopsied for fear it was BCC. It was negative. the lump returned and years later was removed again. Still know issues. Last night I was shaving my legs and saw a very dark freckle on the scar area. I examined it further after getting out of the shower. It was small (2 mm) but struck a cored with me, as I'm very used to my freckle colors and it was distinctly different. Then later that evening, my boyfriend noticed it too and was drawn to it. Clearly it's new and an ugly duckling relative to everything else. I'm trying to stay calm until I can get into see a dr, but I can't help but be anxious. Have any people here had melanoma on thermal burn scars? 

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JoshF's picture
Replies 13
Last reply 11/23/2016 - 12:14pm

HI MPIP Family-

I just wanted to put out a message venting. So I'm heading to Houston tomorrow as I'm scheduled to get 4th ipi dose on Tuesday. While I'd never give up the fight, my optimism and half glass full attitude on this Adoptive Cell Therapy is quickly fading and turning to half glass empty. While I believe my body attempted to mount an immune response, my sub q's are still there and now I've noticed a small sore lump in side of neck.I feel pretty good but I'm so disappointed. I don't know what to think...I'm not sure doing ipi Tuesday and waiting to do scans on Dec 15-16 is a good plan. I'm sure MDA will think it is but I'm very wishy washy. This would be my 11th dose of ipi in last 3 years....starting to think that ipi as single agent isn't my long term fix. I fought so hard to get those Tcells infused into me, brain mets, infection, liver out of whack and for the first time in 5 years I was physically impacted/ill from this disease. But I made it and was so hopeful. This is what I love and hate about this forum...the disappointment I have to read from so many, yet I love that I can just open up because so many of you understand and have been there. Sorry I'm biased because I only want to hear good things out of this forum as we all do, I'm so saddened by the struggles but so grateful we're hear to pick each other up and push us forward. Blessings to you all, I'm going to hug my wife & kids a few more times today...it helps when I'm completely broken.

Josh

Let's work for better treatments....for a cure!!!!

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Anonymous's picture
Anonymous
Replies 2
Last reply 11/21/2016 - 2:45pm
Replies by: SOLE

My son (T3b N1a M0 ,primary 3.9mm ulcerated) had an appointment with the surgical oncologist, who along with the medical oncologist had recommended clnd and treatment (ipi or trial of Keytruda/ipi). His ct scan was negative -yay- except for "a small spot in his chest which is probably just reactive." Now the surg onc is saying he is on the fence about the clnd because there was only a little bit of cancer in the node, but the med once wants it done. My son had decided to have the surgery and go for the trial in the hopes of receiving Keytruda ,but now there is uncertainty. And while I know the decision is not mine to make, I am not in favor of the clnd.Is the advice of the med onc in the best interest of the patient or the trial? What do you do when the two Drs treating you no longer seem to be on the same page? Any thoughts would be helpful,thanks!

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Bvince's picture
Replies 4
Last reply 11/21/2016 - 11:25am

Yeah... Like I said above... No known primary. I'm scheduled for a PET scan on Monday.  Any idea as to the accuracy of a PET scan, and how helpful it can be in trying to identify the primary?  How quickly can this spread? I'm a vet, and have absolutely no confidence in a timely response by the VA. So I have gone through a non-VA provider and a separate medical insurance. Aside from this diagnosis, and the growth on my neck, I feel great!... I work out 2-3 hours a day.???

 

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jennunicorn's picture
Replies 4
Last reply 11/21/2016 - 6:08pm

I had my second Ipi/Nivo infusion on Wednesday. Yesterday I woke up with stomach cramps. As a woman, it feels like cramps that happen during my menstrual cycle.. but it's nowhere near that time of the month.. so it's weird. Just wondering if anyone else has experienced cramps? It's on both sides, lower abdomen area. No diarrhea or any abnormal bowel movements. Hoping it's nothing and will just go away, but it's really uncomfortable right now. Will definitely call my onc on Monday if it doesn't go away or beforehand if diarrhea starts up.

Hope everyone is enjoying the weekend so far.

Jenn -  IIIC - currently doing Ipi/Nivo (Yervoy/Opdivo) 

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jms0104's picture
Replies 9
Last reply 11/21/2016 - 12:26pm

I know my prognosis as a recently dx PT1A, .48mm, Clarks level III, no ulceration, no regression is favorable relative to many on here, so thank you in advance for entertaining my questions.  I lost a step-father to a quick stage 4 10 years ago and have a keen understanding of how dreadful this disease can be for some.

I had my WLE a couple days ago but was not able to get a SNB due to my specific staging.  The math indicates that my case has about a 3% chance of spreading to regional lymph nodes, and those odds apparently don't justify the expense of the SNB.  However, I'm sure the unlucky 3% out there wish they had pushed harder and perhaps removed lymph nodes in an effort to stop the spread.  I understand the concept of diminishing return...I.e., the SNB is likely a waste of time and money for the vast majority of thin melanomas.  However, due to the deadly nature of this cancer, why should i accept anything less than 100% effort?  I fail to see how getting the SNB could be a bad thing in my case.  

My plan is to push for the SNB after our Thanksgiving holiday, with perhaps some blood work or other testing.  

Cheers, and best wishes to all on here.

 

Jay

 

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susanspotless's picture
Replies 5
Last reply 11/21/2016 - 4:20am
Replies by: Kim K, Janner, susanspotless

I had melanoma in 2009. The dermatologist my Primary referred me to removed the tumor then sent it out to the pathologist  who diagnosed it as a melanoma. She recommended further excision with wider margins. The dermatologist  took it upon himself to do the wider margins removal in his office on a second office visit then he sent me to a surgeon who did a WLE & SNB. 

I delivered the tumor to the Hospital and their pathology lab found it to be an ulcerated IIa, Clarks level 5 with a high miotic rate, TNM pathological state pT2b N0 (i) MX. 

I am asenior citizen, was a smoker for approximately 45 years who quit 7 years ago . Last week I had a chest CT done and the findigs were:

Lobulated juxtapleural nodular opacity anteriorly in the upper lobe of the left lung
measures 1.6 x 1.8 cm.

There is also a 4 mm nodule in the lateral basilar segment of the left lower lobe.

Impression:

Lobulated nodule in the upper lobe of the left lung is nonspecific, but
suspicious for metastatic disease considering the patient's history.

The Dr.'s office called the following day and said he wants to see me. I made an appointment but haven't seen him yet so I have been researching this all day. I am wondering if this is something they will observe for growth or do they just go straight to further imaging, biopsy, what?

Thanks for any help you can offer :)

susanspotless

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Anonymous's picture
Anonymous
Replies 2
Last reply 11/18/2016 - 8:58pm
Replies by: Totally Blessed, Janner

I know that all new spots need to get checked out and I plan to do that but in the meantime, am just hoping to get some opinions and knowledge based on this terrible disease.

History - I have not had a melanoma but had a BCC removed in my 20's. Due to that and family history of melanoma, I go for skin checks every six months. Have had moles removed and a couple come back as atypical but thankfully, nothing else. 

Given this, I check my skin often.  This morning, I noticed a brown "patch" / spot / area, on my upper back, I estimate it be a good 1-1.5 inches long.  It doesn't look like a mole, of which I have a fair number or like anything else on my skin. I am 99% certain it wasnt there just a couple of days ago!  It has very defined edges from where the browness is separated from my normal skin color. It's rectangular shape and almost looks like a burn mark from something hot, however I wasnt burned with anything there.  

My question is, can melanoma go from entirely non visible, nothing on the skin to something that large and clearly visable, essentially overnight?  Or does a "new" spot usually start small and then grow from there?

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Anonymous's picture
Anonymous
Replies 13
Last reply 11/28/2016 - 4:03pm
Replies by: Anonymous, welcome32, klcouser, dmturner, Tim--MRF, slh4448, Toby0987

My daughter 23 years old was diagnosed with Stage 3 melanoma last month.  Her Tumor thickness ws 0.9mm.  Ulceration absent.  6 mitosis/mm2.  She had it removed along with a sentinel lymph node biopsy which came back saying present as clusters of tumor cells, the largest cluster measuring 0.4 mm in size, no extrcapsular extension seen.  The first melanoma oncologist wanted her to have the CLND along with a year of treatment on interferon.  We were ready to go ahead, but then were able to get in to a Dr. at Sloan Kettering, who says they feel in her case the wait and see approach is the road to take.  Just so scared and don't know what is the right path....

Carol Gonsalves

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Casitas1's picture
Replies 6
Last reply 11/21/2016 - 12:51pm

Now that I have every ones attention. I was wondering if there are any post pd-1 folks that have had joint pain/inflammation as a side effect of treatment? I started getting this after 4 infusions. I made it to 13 and came off treatment. Been about 8 weeks since last dose and still suffering... My question is how long it might take to subside? Is it gradual or quick? The prednisone takes the edge off so i can at least work.The off days are pretty brutal though.

Best, Paul

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Lentil's Mommy's picture
Replies 3
Last reply 11/18/2016 - 3:22pm

Hello! I was diagnosed with stage 4 metastatic melanoma in July. After a neck dissection with the removal of 96 lymph nodes, and a round of SRS radiation on my brain, I started Pembro. I am 2 treatments down and not sure what to expect going forward. One of my oncologists mentioned arbitrarily deciding a time to stop treatment, maybe after a year. The other suggested continuing treatment forever as long as it is working. I know I am getting ahead of myself, but trying to stay positive, and plan on best case scenario of what to look forward to if treatment works. I am 35 years old and have a 2 year old Daughter. I am grateful for everyday I have with her, but am struggling with the thought of not being able to have another child due to long term treatment. Any others with similar situations and advice? 

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