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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I haven't been on here in a while, but I wanted to stop by and let you all know how I'm doing. You have all been so great and uplifting to me, and really helped me through so far. I was induced on March 13th, and gave birth to a beautiful, healthy baby girl. I was very happy to meet her, although melanoma loomed in the back of my mind the whole time. On March 21st, I had PET/CT scans done, and got the call on March 24th that they were all clear! Right in time for my Fiance's birthday on the 25th, so we went out to eat and celebrated both the good news, and his 26th birthday. It was a very good night. But I knew I had to have the lymph node dissection done still, since one node had micromets found after SNLB. I had this surgery on April 2nd. WOW...I did NOT expect that much pain. The groin area is NOT a place you wanna have surgery...and I guess the fact that I had the surgery about 2 weeks after delivering my baby made it even harder to recover. I spent one night in the hospital and am still recovering at home. I did develop a very nasty staff infection 2 weeks after surgery, which landed me back in the hospital, and then at my oncologist's office every day for a week for IV antibiotics. It's all cleared up now. So far, very little swelling/lymphedema. I actually ONLY get it when I wear my compression stocking. Weird...also, the rest of the lymph nodes taken were ALL CLEAR!!! This was the first time I could really breathe in months. It was a wonderful moment. I do know that I always have to look out for melanoma now though, for the rest of my life. But I am hopeful that I will beat the beast. This has by far been the hardest journey of my life, and I want to bring love and support to anyone else out there who is also battling this. ESPECIALLY if you are diagnosed while pregnant. I never, ever want anyone to deal with that awful awful stress. The stress from a melanoma diagnosis ALONE is enough to just drive you insane, add a melanoma diagnosis during pregnancy...I cannot even describe the despair I felt. I am doing so much better now, and I start Interferon on Monday, April 28th. I know it will be a VERY tough road, but I'm ready.

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Jubes's picture
Replies 6
Last reply 11/27/2016 - 3:32pm
Replies by: Jubes, cancersnewnormal, Bubbles, Anonymous

Hi all

had my right lower lung lobe removed two weeks ago. I am amazed at quick recovery. However I have a persistent cough especially if I try to take a deep breath. I had some air leaks after the op and the dr said do not take any cough suppressants. 

My family wants me to call the surgeon even though I will see him for x ray and post op in a week. I already saw him a week ago to take the sutures out. Family think the cough sounds like the one I had when the cancer was really bad. I am also extremely lethargic, but it has been very hot here and I know my cortisol levels are very low and will be tested in a few weeks  

Personally, I think we have removed the cancer and I don't like to pester doctors unnecessarily. I have emailed the surgeon to keep the family happy. Just wondering if any of you had bad coughing after lung surgery and how long did it last. 

Thanks

anne-Louise 

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Sophietx's picture
Replies 9
Last reply 11/26/2016 - 1:11pm
Replies by: Sophietx, Anonymous, jennunicorn, Janner

Hello,

I was just diagnosed with melanoma in situ in the US. I looked at my old photos and notice that my mole started after my 2nd pregnancy about 12 years ago at age 28. It was a perfect looking, round but very dark flat mole. It was removed and also had WLE at large hospital center. Do all melanomas in situ progress to invasive melanoma? My father had many dark moles and I just assumed it's after him. Should I have 2nd pathology done?

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jennis3b's picture
Replies 1
Last reply 11/26/2016 - 9:52am
Replies by: Linny

Just wanted to ask your opinions... I had my CT Scan last week. They scanned from neck to pelvis. In the report it only mentions nodes in my chest area summary. There's no mention of them in my neck, abdomen, or pelvis summaries. Is this something to bring up with the doctor on Monday?

I included the chest summary below. 

Thanks in advance!

"No pleural or pericardial effusions. No evidence of lymphadenopathy in the thorax by size criteria is seen. There are stranding and infiltrative densities within the right axilla consistent with postsurgical changes. A few sub-cm nodes in the more inferior right axilla are also present.

Other sub-cm nodes of the thorax are also not significant by size criteria. There is soft tissue density conforming to the anterior mediastinal space, consistent with a residual thymus.

No suspicious osseous lesions of the thorax."

 

Jenn

Stage 3b

http://thisgracelife.blogspot.com/2016/11/in-my-skin.html

"Fear may be what we feel, but brave is what we do." Ann Voskamp

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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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Anonymous's picture
Anonymous
Replies 0

Well I had my wedge lung biopsy 2 days ago and the preliminary results are that it is melanoma.  It was my first question to my husband and daughter in the recovery room. Although I knew it was very likely it was still hard to hear, and I know it was hard for them to hear too. 

I will be talking to my oncologist soon, and just want to know if anyone has any suggestions about what questions I should be sure to ask.  I am BRAF negative, was stage 3C prior to this and have not had any treatment other than CLND left neck. 

Thanks for being here as a place for people struggling and seeking answers to meet.  

Peggy

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Anonymous's picture
Anonymous
Replies 0

Today I went to the orthopedist due to reoccurring bone pain in my right arm. He wanted to do an X-ray to rule out anything more serious.

The X-ray came back with a couple pea sized white spots on my bone. He wasn't to worried about this but then again he doesn't know that I recently had a malignant mole removed from that same area. 

Could it be mets? I'm just wondering because I don't really know what they would look like. I'm going to ask my gp but I wanted your thoughts on this. Has anyone had anything similar happen? I think that it's probably something normal but I just want to make sure. 

Thanks :) I'm going to my GP on Monday so I guess I'll find out then.

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lmccann2016's picture
Replies 14
Last reply 11/24/2016 - 2:42pm
Replies by: John-Q, lmccann2016, imgonnabeatthis, SOLE, Anonymous

Recently diagnosed with melonoma. It has been removed however tumor was 4.7 mm mitosis was 7 not ulcerated and margin cleared by 0.3 mm. Seen oncologist and had fine needle as I have swollen node and shows cancer from pathology report. Nov 4th under going wide excision to clean up neck get more margin and SLN biospy removing all nodes on left side of neck where original melonoma detected. Well I am scared. My name is Lisa 3o have a family and now after this I have just stopped everything. Depressed anxiety you name it. My biggest fear is dying funny I work as a personal support worker.

They haven't given me a stage however I have been reading and if it's in nodes I am stage 3 I guess I'm confused some say two some say three from what I read. So far organs are OK no spread at this time.

Any advice would be greatly appreciated

Lisa McCann

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HU's picture
Replies 3
Last reply 11/24/2016 - 8:08am
Replies by: Anonymous, HU, Janner

Hi,

I have  been diagnosed with melanoma on my upper back. Tumor is shalow (0.27mm), absent ulceration and no mitosis. Although I know that in terms of melanoma this is all pretty good news, I am really scared. My  pathology report says the tumor shows extensive regression, involving the papillary dermis. This has concerned my doctors enough that they are considering doing a lymph node biopsy. I can't find a lot of information regression and what this means of my prognosis. What I do find is mostly conflicting.Can anyone help?

Thank you so much 

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Anonymous's picture
Replies 2
Last reply 11/23/2016 - 5:24pm
Replies by: Anonymous

wondering if anyone has any experience with getting compassionate use for stage IIIb?  how do we go about getting this?  hoping to get Keytruda.

thank you for any guidance

 

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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
Replies 6
Last reply 11/23/2016 - 12:08pm
Replies by: jennunicorn, geriakt, Anonymous, Carole K

hello folks, my husband is a stage IIIb and had SNB and CLND and will be starting IPI soon. thank you for all your help & guidance thus far on this forum.  (better information on this forum than we have gotten from three  melanoma centers combined thus far !) .

we would like to complement the medical route with any viable natural regimens. there is an overwhelming amount of info online but i would really appreciate the help of you guys who have been down this path, to point us in the right direction so we don't lose time getting lost in all the hype.

where do we beging to educate ourselves and choose the right path?

thank you kindly

 

 

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Anonymous's picture
Replies 2
Last reply 11/23/2016 - 11:50am
Replies by: Tim--MRF, jennunicorn

I've had a green spot ever since I was little. It was flat and evenly colored so I didn't worry to much about it. 

A couple years after that I went to the doctor and she told me not to worry unless it grew to 6 mm (it was 4mm at the time) or if it changed color. (I was 11 at the time)

Now I'm 15 and its 8 mm and gone from flat to hard. It used to be a solid green, now half of it is darker than the other and there's a dark reddish purple dot on it. This may be unrelated but I have a lot of bone pain in the same arm... Especially at night. It's weird.

Im worried that it's melanoma or something malignant. I'm supposed to go to the doctor on Thursday but I'm just so scared. My aunt died from melanoma and I dont want to go through that or put my family through that again. 

I would appreciate your input. Thank you so much for taking your time to read this.

 

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Carole K's picture
Replies 7
Last reply 11/22/2016 - 6:09am

Hi Everyone

I was very active on MPIP from 1999 - 2006/2007.  MPIP became my life for all those years and I am blessed for everyone who I met herer, and ALL THE INFORMATION and SUPPORT .Words cannot express the gifts I received here .  As all of you know how difficult dealing with Melanoma can be, we can find gifts from this BEAST  

I was dx in 1995 with an ulcerated mole on my back, which was surgically removed.  To hear I was a stage II and I woud be lucky to have five years crippled me  At the time , the only treatment was INF, which my oncologist did not believe in and thank you God he didn't  He chose a wait and see approach,.  I did well until 4 1/2 years later when I was dx with multipled lessions to both lungs.. I knew I was in trouble.  Now what do I do  Both Sloane Kettering n NY and JWCI in Santa Monica wanted to remove one of my lungs. Something told me DON'T DO IT CAROLE.  I prayed and prayed and prayed for God's guidance.  I started taking Essiac Tea,  I did great and weened myself off of it  Bam, about six weeks later..... Brain MET.  Welcome to the WORLD OF BRAIN MET.  Now I am really in trouble.  

I decided to do Gamma Knife...  Short version ,,, the day I went for Gamma Knife, after the halo ( why they call it a halo I have no clue. For those of you who have had Gama Knife you know what I mean--- Nothing like being S _ _ _ _  and not enjoying it  Once the halo wasin place , MRI here I come.  GK no go.... My tumor had burst and bled  My doctor recommended surgery and said y9ou have time to think about it  Hee said y9ou can go home , think about it anc come back.  NO WAY...  Can you do it first thing tomorrow ?  I can do it at noon,,,,, 

From the time I knew I had the tumor I thought about treatment and spoke to my oncologist, who is and always will be the only man in my life, except for my grandsons.  I toyed with doing IL-2.  The more I thoght about it , the more I felt I just wanted to live life, as long as I could  the best way I could  I have spoken to an MD who combines conventional and alternative medicine .  When dx with lung mets I ran across at least five ot six people who shared a story about MIstletoe for lung mets with me.  I  made my appt. with my doctor and  made the decision to o Mistletoe instead of IL-2.  Why?  I am not sure except, I had just been divorced two months earlier after 27 years of marriage and I wanted to live, to love and to laugh the best way I could, for as long as I could.  I made the decision not to do chemo.  It was just a personal choice and ot the choice for eeryone   

I beame very selfish and spent time taking care of Carole  I had been under so much sress and believe in my heart, it is wht brought both of my recurrences to fruition,  I had massages, I meditate twice a day, I prqayed and prayed and prayed some more and had 200 nuns praying for  me three times a day ,every day, I had Reiki done ( am now a Reiki Master).Listened to visualisation tapes and CD's.  I had to destress and heal fro within. I believed I had to heal  as a whole-- body mind and spirit   In Jan I will be NED 16 years.  He's the best guy ever in my life.  I don't have to cook for him, do his laundry or clean the house .  All he wants if for me to be happy..  

BELIEVE IN YOURSELF, and NEVER EVER EVER GIVE UP HOPE.!!!!  God Bless alll of you  Love and Light

Caarole

PS  I so miss this forum and all the awesome friends I made here,  

I loved going to chat.  We would laugh , we would cry  we would tease each othere and laughter was the best medicine    If anyone wants to reach me please reach me at  MelanomaHelp@aol.com   Sending hugs and prayers to all of y9ou.  Hang in there.  

 

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