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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casagrayson's picture
Replies 2
Last reply 1/8/2018 - 9:18pm
Replies by: casagrayson, Bobman

Has anyone heard from Bobman?  Last he posted he was trying to get back to the mainland for treatment.

Strength and Courage,

Susan

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Replies by: Prd10, Treadlightly, Anonymous

In september of 2015 I had a melanoma removed from my right arm. I first noticed it in april. It looked like a blood mole. My girlfriend wanted me to have it checked out but me being me I just looked it up on Google and it looked EXACTLY like a blood mole. So I decided I wasn't going to have it checked out. in the middle of August I started to have very bad shoulder pain.(a sign from my guardian angel ?? )
I wrote it off as a strain for work. This pain went on for weeks untill I decided to have it checked out. While at that appointment I asked my doctor to look at the mole. He thought it was nothing serious but decided to remove and semd it out for testing. Few days later he calls me on a Sunday night to break the news to me.
I make an appointment for surgery and have the rest of the mass removed as well as a lymph node removed. The lymph node came back good and all further tests came back as no more cancer in my body. I was out of work for 4 weeks do to the 40 stitches on my bicep. Once that was healed the shoulder and arm pain was no longer there.it was gone within a week after the surgery.
FAST FORWARD to today..... the past 4 weeks I have had arm and shoulder pain again..... and once again I chalked it up to a strain at work ....
Then I read this article:

https://www.google.com/amp/s/www.today.com/amp/health/newlywed-dies-afte...

Has anyone else experienced this before and after surgery ??

I have called the oncologist I dealt with and felt like her nurse just brushed me off about it. Telling me I should see the skin doctor or just go to my regular doctor.
I feel like they should be taking this more serious.
It feels like the same pain I had leading up to my surgery. Could my new pain be ANOTHER sign??

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dbrown's picture
Replies 3
Last reply 1/8/2018 - 7:37pm

I have recently been diagnosed with a level 4 malignant melanoma with nevoid and desmoplastic components. At least 2.1mm in thickness. 6 mitosis per sq mm. All I have is the pathology report and booked to see plastics surgeon on Wednesday. How do you know the stage? Do you have to wait until it is removed? Does this diagnosis sound bad? Thanks

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Anonymous's picture
Anonymous
Replies 2
Last reply 1/8/2018 - 5:06pm
Replies by: fleurdelis82, Janner

Hello all,

recently went to my dermatologist who noticed a spot that she said she wanted to keep an eye on and wait 6 months to look at it again. I told her no and that I wanted it removed right away. My biopsy is on Tuesday and I am freaking out. If she thought it was Melanoma would she really want to wait 6 months? I keep emailing her and she stated that the biopsy will show if it is benign or atypical. I have no family history. Would she tell me if she thought it could be melanoma? Sorry just freaking out over here. I have a four year old and am so so terrified. Please help!

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I have had 5 combo doses and 27 nivo maintanance doses and would like to know how you feel if you have had around the same number. I have severe fatigue, salavi gland issues that come and go after each dose, joint soreness, still have the rash but no itching or burning, still on thyriod meds and have to take prescription potassium supplements and vitiligo that continues to slowly spread. My last 2 scans have been NED and my dr wants to continue treatment for 9 more months.which will make treatment total 2 years and 3 months.

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Anonymous's picture
Anonymous
Replies 2
Last reply 1/8/2018 - 2:47pm
Replies by: Hukill, MovingOn

My husband’s third opdivo/yervoy was June 2017. He stopped at that point because of side effects. He still has some days when he just doesn’t feel well.  One issue is he cannot stay warm.  He always has a coat on or he is wrapped up in a blanket.  I realize this is a minor issue compared to others (including what he has been through in the past).  I’m just curious if anyone else has experienced this. 

 

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Jbond09's picture
Replies 4
Last reply 1/8/2018 - 10:25am
Replies by: cancersnewnormal, Anonymous, Jbond09

I was dx with 1A on my left leg no follow up testing by recommendation of the oncologist due to its depth. Over the last year my dermatologist felt a lymph node in my groin area but as I’m a thin person she said sometimes you can feel them more on that body type. Also through the year I have a lipoma in my left upper arm, underneath, I have to raise my elbow to let them check it. I have been having migraines for years. That run in my family but they have been well controlled on an preventative medicine. I feel ok. My husband says I’m sweating profusely at night. He says it really gross. I don’t sweat during the day. I feel like I’m hypersensitive for some reason. I can now feel the lump in my groin along with one in my breast the lipoma and in my neck. I do always feel tired and a bit easier winded  

 

What should I look for?  39 year old mama. 

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Tracyyy's picture
Replies 12
Last reply 1/8/2018 - 9:50am

Hi all, my mum was diagnozed with melanoma in April 2013. Until the end of November all the regular scans were clear, then my mum felt an enlarged lymph node in the groin. Last month they removed it surgically and the biopsy results came back as melanoma in 3 of 6 nodes. The surgical team suggested PET scan, then local radiation in the groin and immunotherapy. However, the melanoma specialist we are seeing does not agree and suggests watch and wait and scans every 3 months. The only approved treatment for stage 3 in my country (Bulgaria) is interferon but he is against it. I know about the FDA approved treatment and I am so dissapointed that our options are so limited here...I know that watch and wait is also an option but I prefer us to do anything we could. I have read so much until now, even the doctor today asked me if I studied medicine, but I think being informed is the key. I also emailed some clinics in Israel as they apply some of the treatment approved in the US.
So has anyone been trough radiation or watch and wait for stage 3? I known it is an individual choice but I will apreciate some advice. I also know that there are many stage 3 and 4 survivors here which gives me hope.

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AshleyS's picture
Replies 16
Last reply 1/7/2018 - 9:49pm

Since being upped to Stage IV nearly 5 weeks ago, I've done a lot of research concerning alternative medicine and diet. I've also had a lot of people reach out to me who are melanoma survivors and other cancer survivors. It seems like all of them made drastic changes to their diet. Many were also treated holistically. What have some of you done concerning alternative medicine and diet? One problem I am having is contradictory opinions and research. It makes it difficult to know what to do.

once again, I'd appreciate anyone's advice! Thanks!

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SRVilly's picture
Replies 13
Last reply 1/7/2018 - 6:37pm

Hello all!

I first want to thank you all for all your posts over the last year and a half. This is my first post, but have been reading every day. 

Here is a quick overview. 48yo, Light skin, red hair, many freckles and moles, and multiple sun burns throughout my life. Summer of 2016 had a small mole on my right leg change ever so slightly. I’ve had multiple moles removed over the years with no issues. Went to my derm, she did a shave biopsy like all the others. Well to all our dismay, malignant melanoma. It was .95mm, no ulceration, clarks IV, mitotic rate of 5. Not great, but not bad. Did surgery with clear margins and a clear SLN biopsy...all (should be) good.

Fast forward 1 year to summer of 2017 and I feel a small bump on right groin. Did biopsy, yep, melanoma. After much discussion, did the CLND. All 14 nodes were clear except the original. Did PET and MRI of brain and all is clear. We decide to do watch instead of meds due to history of colitis.

Went for my 4 month CT and my right exterior iliac node has grown to 2cm. Everything else was clear. Did a biopsy and sure enough, melanoma.  My onc decided to do another PET to double check and found multiple, 6-8, spots under 1cm on liver. She then ordered MRI in liver to double check and spots are positive.

Needless to say I am very disappointed/distressed with this outcome. I am B-RAF negative so am starting Opdivo or Yervoy/Opdivo combo as long as I can tolerate next week. I have been reading many positive stories, but I am just looking for some advise/words of encouragement to help me through the next week until I can start treatment. I am really having trouble wrapping my head around how fast this has progressed. 

Thanks again for all you all do and all the help you provide. I hope you all have a blessed New Year and look forward to your replies.

SRV

 

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Hey warriors! I hope this finds you all kicking some Melanoma butt!

I just finished the trial of PV-10/Pembro yesterday and will be transitioning to Pembro only now.

Prior to this last round of PV-10 I completed head, neck, and axillary ultrasound with no indicated need to biopsy anything per the radiologist. The tumor injected with PV-10 was greater than 4cm (40mm) x 3.9cm (39mm) when I started and now appears to be little more than a few small lumps of dead tumor. The PV-10 has not been a pleasant treatment but if it did this to the injected tumor...who cares...what's some searing pain and interesting purple markings amongst friends? 

More definitive answers will follow after my CT and brain MRI later this month.

The Pembro continues to be very manageable and I'm optimistic that it is doing its work in conjunction with what PV-10 has done...but again, scans will tell. This round seems to be brining the usual aches and pains in my joints but no chills or fevers (fingers crossed) yet. All labs have remained almost totally normal thus far with a little deviation in WBC here and there. Importantly, thyroid, liver and kidney function, and most every cell count has stayed in the normal range. 

Overall, the team at MDA appears happy with what has transpired so far with my results in this trial...but they also want some imaging to confirm what is actually happening. There is no denying that the injected tumor has largely disappeared (although I have an ulcer that the PV-10 continues to leak from and an interesting scab that has formed over the tumor area...I have been assured this is normal). 

If anyone has any questions about PV-10 I'd be happy to try to answer and explain what the experience has been like for me...of course if the scans show that the infraclavicular node mass has resolved I'll be their loudest spokesperson! I suspect we'll see more trials coming down the road with it.

I hope you are all fighting hard, and taking the battle to this most devious invader! Happy 2018 and much health to you all!

Tex

Tex

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Anonymous's picture
Anonymous
Replies 1
Last reply 1/6/2018 - 3:45pm
Replies by: ed williams

Abstract of article in latest Science journal

Cancer immunotherapy

Resident gut bacteria can affect patient responses to cancer immunotherapy (see the Perspective by Jobin). Routy et al. show that antibiotic consumption is associated with poor response to immunotherapeutic PD-1 blockade. They profiled samples from patients with lung and kidney cancers and found that nonresponding patients had low levels of the bacterium Akkermansia muciniphila. Oral supplementation of the bacteria to antibiotic-treated mice restored the response to immunotherapy. Matson et al. and Gopalakrishnan et al. studied melanoma patients receiving PD-1 blockade and found a greater abundance of “good” bacteria in the guts of responding patients. Nonresponders had an imbalance in gut flora composition, which correlated with impaired immune cell activity. Thus, maintaining healthy gut flora could help patients combat cancer.

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edward989's picture
Replies 4
Last reply 1/6/2018 - 3:08pm
Replies by: Anonymous, ed williams

Recently, the newest study made a step forward in treating Melanoma with use of treatment called anti-PD-1 therapy. It is a threatment that uses TNF-alpha protein, which rases anti-tumour immune responses in samples of human melanoma.

Best,

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Jvlie's picture
Replies 4
Last reply 1/6/2018 - 1:17pm
Replies by: SABKLYN, Fen, Jvlie, Janner

Hi community,

In September i found i have melanoma. Since then i have my moments, i try to still positive but the doubt it's a very dificult thing.

My melanoma have 0,8mm; 0 mm2 (mitotic rate), and it's not ulcered, no vertical grow, linfocity brisk.

I think because the chances now it was a 1b? It is correct?

I has the safety margin and i have a big scar on my chest, also did a biopsy SL, but i don't now the resoult yet, and this is kill me, i pass all day reading this about melanoma, i think i still hypocondiac, because if i still any pain i thing is related.  How do you lead with this?

I always considered myself an heathy person and now i have afraid to lose it...I now it's commun but i only have 32 yeas old?

Can you help me please?

Sorry about my english, iam from Portugal.

 

Thanks a lot and good look

 

 

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SABKLYN's picture
Replies 2
Last reply 1/6/2018 - 12:23pm
Replies by: SABKLYN, Bubbles

For my 3A brethren who wrestle with this decision, here are the results of a 10 year study.  In the spirit of full disclosure, I had the procedure (right groin) 6 years ago and don’t regret it.  At the time, it was a big decision so thought this might help some with that choice.

https://www.mskcc.org/blog/definitive-study-shows-people-melanoma-do-not...

Hope,this helps!  

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