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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Kamga's picture
Replies 4
Last reply 6/17/2017 - 11:26am

Hi everybody

I write to you because I am really desperate. My mom has a melanoma that has spread  in almost all o bodies except the brain. She is very tired and can hardly walk. She will take part in a trial combo Keytudra / TVEC  you think she still have a chance be cure ?? . sorry for my poor englisch  but  I hope to find some comfort here.

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My husband has had 3 rounds of 10 mg yervoy, but he is having so many reactions.  In fact, they admitted him in the hospital yesterday.  Strong diarrhea, extreme fatigue, welts, etc.  Prednisone has been the wonder drug, but as soon as they wean him off, he is back to the fatigue and above issues.  It does not look good for his fourth infusion (he is Stage 3b).  Anyone go through this and what plan of action was taken when you could not finish up yervoy treatment?

I cannot tell you how much this site has helped me.

Donna

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Shaneswife's picture
Replies 35
Last reply 6/19/2017 - 8:43pm

Shane left this world at 13:20 est. I'm beyond devasted. 

 

Janis

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CindyCo's picture
Replies 2
Last reply 6/16/2017 - 2:32pm
Replies by: Julie in SoCal, MikeW

Has anyone had a lung tumor harvested or biopsied and can share their experience?  They will be removing 1cm and we are wonering how invasive it will be and what the recovery time will be like.  

 

 

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jennunicorn's picture
Replies 28
Last reply 6/22/2017 - 1:42am

It's been hard to come on here lately, my heart is still broken over the friends we have lost and those that are struggling currently. 

I had a PET/CT scan this week and got some good news and some news that makes me feel a little funky.

So, the good news: the scan showed nothing new, yay!

The funky news: back in September when I had my recurrence and I had a needle biopsy on a groin lymph node and an armpit lymph node, the groin came back positive and the armpit came back negative. Initially we took that answer and started Ipi/Nivo. Since then I've had a couple of scans that showed the armpit lymph node staying enlarged and with a good amount of SUV uptake on PET.. so I had my suspicions that the armpit biopsy was a false negative and I've been stage 4 this whole time. This recent scan showed the armpit lymph node has shrunk in half and has half the amount of uptake. Groin has shrunk a ton and no uptake at all. I talked with my onc, and she confirmed that she also believes the armpit has melanoma and she has looked at me as stage 4 this whole time. I guess I never wanted to really confirm that with her, it's a hard pill to swallow knowing you've come to the end of the stages, even if it's a minimal amount. 

But, I am glad things are going in the right direction. And, if this armpit lymph node stops responding, we can always surgically remove it. 

Sending lots of positive vibes and love to everyone here going through their own war with this disease. 

Jenn - stage IV - Ipi/Nivo (Yervoy/Opdivo); now on Nivo maintenance

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adrianc's picture
Replies 4
Last reply 6/17/2017 - 12:28pm

I am an already registered user and I just have registered brand  new account under my husband's name. I am the patient with cervical mucosal melanoma ,diagnosed  2B back in July 2010.The reason I made this new registration is that I was not aware of the fact that upon Google searching your name ,all your old posts are available for anyone on the Internet  to access and view.I am not quite sure about the terms of use and privacy we agree on when registering on this site,but I am not  happy about this. As patients we have the right of Privacy. I carefully choose myself whom I disclose my personal medical  information to and definitely don't want it splashed all over the web without my consent.To the best of my knowledge I have not authorised this site to disclose  my medical history  to third parties besides the registered members of the MPIP forum.Anyone else having the same issue? This first.Second:  it's beeen a wild ride for me again.After going on 6 years NED ,I have noticed a red raised spot around my urethra last summer.It bled on few occasions and it continued to grow untill it formed a sizeballe mass  inside my urethra . I was sure my cancer is back with a bang. However the PET scan in September was clean and the two sytology test  showed no evidence of abnormal cells.This May I was seen by my gynecological oncologist and an urologist oncoligist and they were immediately alarmed about what was going on.Since then it's been a wild running between doctors offices and trips for test imaging .MRI showed mass contained inside my urethra with no lymph node and soft tissue involvement.At this point I was told I have melanoma reocurrence  in my urethra even though the PET scan came back clean.No one was really sure what was going on.I just had complex urethral surgery in Boston on 2 June and my pre op diagnosis was urethral melanoma recurrence.The greatest minds in America conferenced on my case and whilst Dr.Jedd Wolchuck from Sloane Kettering insisted on Immunotherapy  post op, Dr.Stephen Hodi from Dana Farber Cancer Institute was not in favour of it. Anyway I was  told obviously I have progressed during the last few years and that  I would need to be  re-staged post op. I've just had a very complex 9 hours surgery where they removed my urethra and the tumor inside it  and reconstructed a brand new urethra .I am currently recovering. After having enduring  an enormous emotional distress and having   accepted the hard fact I have progressed, here come the biopsy results; and a stunning turnaround of events with it  .To everyone dismay biopsy results  come back negative for cancer.I am still in shock and disbelief because I was just as sure as my doctors that  mel was back with full force.The tumor turns out to be  benign; however still needed to be removed because it was closing on my urethra.I feel like I looked into the abyss and pulled back again,dodging a bullet yet once again.I am in a lots of pain and discomfort  and I have a very slow, tough recovery ahead with a slew of complications  due to the nature of the surgery and it's specific location.But I am so unbelievably gratefull to be still here, and with a dream scenario,still NED, that I feel I have absolutely no right to complain about it.We have lost so many nice people to this horrible disease lately, it's beyond devastating.I know the greatest minds in America  are dedicatingly working to eradicate this disease  or at least develop efficient treatments to treat is as a chronic condition in the forseeable future. I know that one day they will get there eventually;it's just not happening fast enough. RIP Artie, Paul, Josh, and all who lost their precious lives to this horrible disease, my heart is truly broken for them and their families.And remember that despite their amzing knowledge and expertise, no doctors can predict an outcome quite yet.Only God can. Peace out,

Teodora Chasse

T.Chasse

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Bmulderbehnia's picture
Replies 5
Last reply 6/16/2017 - 12:38pm

I am Stage 3B melanoma, recurrence, and in a clinical trial using Yervoy (Ippilimumab) for 3 years.

I am wondering if anyone else on Yervoy has had problems with their eyes? I've had detachment of the vitreous in both eyes, so lots of floaters (never had this before).

Most recently, I had a severe reaction to dilation-drops, leaving my eyes painful, watering, light-sensitive, cornea irritation, and light-sensitive in one eye.

My theory is that it may be related to the Yervoy treatments, since my eye problems started one week after my first treatment.

The ophthamologist just attributes it to age (I'm 57). I don't buy it.

Bonny

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Anonymous's picture
Anonymous
Replies 2
Last reply 6/15/2017 - 9:02pm

I wish there was a stage 1A message board for melanoma as this post is really appropriate for people who have experience with or were diagnosed with low risk melanomas.

I am so respectful of the people who are struggling with a life-threatening disease and this post has so little importance in comparison so I hope I am not being disrespectful by posting on this board.

That said, I have an interesting situation and I'm grappling with how to wrap my head around it. So I'd love any insight or advice.

I was diagnosed in April with stage 1A melanoma. The mole was removed the day after I returned from a week on a boat in the Bahamas. Unfortunately, there was no shade in the Bahamas and I didn't yet realize my risk factors so I was badly sunburned when the mole was removed. In fact, the reason given for removing the mole was that it was red. My back looked tan and I didn't mention how much sun exposure I had gotten to the doctor because I was a bit embarrassed that I had been so careless.

Anyhow, I received a 1A diagnosis which was confirmed by a second pathologist who works with the first.

As I was researching (or over – researching) on the Internet, I came across a number of articles which discussed overdiagnosis, and the possibility of being misdiagnosed when one has mitigating factors such as a sunburned mole. 

Anyhow, I sent my mole off for a third opinion to a Yale pathologist who has closely studied misdiagnosis. I felt very confident that he would give me the same result as the first two, but felt it would make my head rest easier just knowing that I had explored all avenues so I could have a really competent feeling on what exactly my stage and breslow depth was.

I just received my results and he diagnosed my mole as a severely atypical nevus, not melanoma.

He also said that he brought the mole to conference with a group of pathologists and they all unanimously agreed that it was an atypical mole.

I was incredibly fearful after my original diagnosis. I have three kids who need me and I felt so very fearful that I was going to miss something big in their lives: graduations, marriages, everything, because I had been so foolish and hadn't been safe in the sun.  My worry level definitely outweighed my actual risk based on my diagnosis.

If you're still reading, here are my questions. 

My first thought getting the recent diagnosis was one of relief. Should I be relieved?  I now have diagnoses that say both. Who do I believe? Did I have melanoma?

Does this affect my status for future health insurance and life insurance applications? Should I do anything about that one way or the other?

My husband says I should now just be cautious and grateful and I think that is good advice. I have obviously learned lessons about the sun and about being proactive about body scans and I plan to act as though the first diagnosis is correct in terms of getting regular skin checks and being careful in the sun. I had an extensive WLE and I am grateful that I did.

I like thinking that my most recent diagnosis is the actual correct one…  that would definitely help my head...  I'm interested if you all think that I can trust the recent diagnosis or if you think my diagnosis is just uncertain.

Thank you for listening. I'm sorry this is so trivial and I appreciate any thoughts that anyone has.

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Anonymous's picture
Replies 11
Last reply 6/17/2017 - 2:16pm

Hi all,

Just wondered how others would feel in this position:

My sister is undergoing her last infusion of nivo today. Her trial was limited to 48 weeks only and in that period of time, they aim for 24 infusons. Due to treatment interruptions, this last one is only # 23 and she won't get # 24, time is up.

We've found out that there were two arms in her trial - one was nivo indefinitely, the other, which she's in, is the 48 weeks.

She's come so far back from where we were a year ago that she's understandably very nervous. As far as we know, there is still one large liver met and several in the spleen. We know the nivo will continue to work but still...

We can't "rock the boat" over this ... can't go looking for another trial yet. I told her I'd ask others how they felt and what actions they might take in similar circumstances.

Also, she had a brain scan last week and though we haven't seen the radioncologist yet, a nurse has confirmed the scan was good, so her driver's licence is "good to go." Yayy!!

Thanks for any responses and wishing best to all on here!!!

Barb

 

 

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Bubbles's picture
Replies 4
Last reply 6/16/2017 - 9:00am

Here's a look at the whole she bang:

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/06/asco-2017-atezo-anti-pdl1-with.html  

Combining the efficacy of BRAF/MEK (though one must be BRAF+ and that's only about 1/2 of us) with the durability of immunotherapy would be a great thing indeed!  Keep working researchers!  Keep working! - c

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CHD's picture
Replies 1
Last reply 6/15/2017 - 2:00am
Replies by: CindyCo

Does anyone have a link to the Facebook vulvar/vaginal melanoma support group started by Ed Everest in 2013?  I think Jerry was a part of it too (?).  : (  Is the group still active?  Doing a Facebook search is not getting me anywhere.  Wondering if anyone here knows anything about it?

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eb_scared's picture
Replies 3
Last reply 6/18/2017 - 4:33am
Replies by: eb_scared, Janner

Hi,

I have a family history of melanoma and grew up in florida. Today I got a biopsy result back--atypical compound mlanocytic proliferation. They said they cannot tell me if it is melanoma or not. It wasn't all removed and they want to biopsy the rest of it to see if it's ok.

Now as I understand it, I will need to wait a few months for the final biopsy. I am so scared--the mole had been there a while and didn't do anything obviously strange, but during a camping trip it suddenly swelled and scabbed. I went right away to get it biopsied when that happened. Now they are saying it may have been an atypical lesion that was traumatized, but they don't know if it is melanoma or not. They wouldn't even assign a probability to it.

I don't know how I will cope with waiting the next few weeks. Does anyone have advice about that?

Because it bled (although it certainly seemed like an acute inflammation due to irritation), I am very scared since I've read this tends to indicate melanoma that has spread. I'm only 25 and scared I might actually have melanoma.

Thanks,

E.B.

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Shaneswife's picture
Replies 15
Last reply 6/15/2017 - 12:52pm

I got Shane settled into hospice. He's been unconscious for 30 hours. So no food and water. Doctor predicts a few hours to 2 days before the end. 

 

Janis

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