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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lakegirl67's picture
Replies 4
Last reply 4/25/2016 - 12:27pm
Replies by: lakegirl67, Janner, Anonymous

The path report from the WLE showed "no residual atypical melanocytic hyperplasia (melanoma in siru) within the re-excised tissue." Dr. took 8 mm margins. Since the procedure, I have read that MIS on the neck should be treated with wider margins. Can anyone please tell me if this is correct or recommended? My Dr. said not to worry, but I am second guessing everything and want to have the best possible outcome with this MIS and WLE on my neck. I also showed him two other moles under my underwear line that he did not see during the full body because I left my underwear on. He wants to remove them the middle of April after I return from vacation. He said he isn't overly concerned and just taking precautions and guessing may be dysplastic. I am a mess.  Thanks for any input you can give.

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Anonymous's picture
Anonymous
Replies 6
Last reply 4/22/2016 - 4:25pm
Replies by: jennunicorn, Anonymous

http://imageshack.com/a/img923/8749/vHxodP.png

 

It's small but seems irregular.

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Anonymous's picture
Anonymous
Replies 3
Last reply 4/25/2016 - 8:23pm

Hello,

I was diagnosed with Stage 1B melanoma in 2014.  I feel very lucky that i caught it this early.  I had the wide excision and sentinal node done and everything came back clear!!  I started following up with a dermatologist that took 4-6 moles every 3 months.  I did this for 1.5 years and left there to go to another dermatologist.  None of them had ever ordered blood work or xrays.  On this last trip to the dermatologist (second visit where they have not removed anything) she suggested i have a CBC w/ diff/CMP/LD and a chest xray.  I didnt really pay to much attention because everything has been going so well.  My CBC w/ diff and CMP came back perfectly normal as did my chest xray.  However, my LD came back slightly elavated at 222 (reference range is 100-220). The dermatologist told me not to lose any sleep over it but wanted me to followup with a hem/onc.  I have an appt next week.  Side note- i work out at the gym 5-6 days a week and the weekend before i had my blood drawn we did a lot of yard work and then on Sunday went on a 2.5 mile run in the heat.  My question is this something i should be overly concerned about?  Had anyone with Stage 1B had this test done?

I am trying to stay positive...as i have read on hear before most people with stage 1 arent really on here, but i am still scared :(

 

Thank you

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rabbits68's picture
Replies 4
Last reply 4/25/2016 - 2:06pm

I spoke today with my physician about using these drugs together. I have not developed a resistance to MEK yet, but he wants to be on the anti PD1 before it happens. My scan this week shows all but original lung tumor is gone. Very happy about that. I was on Yervoy last year and didn't feel well on it so I'm concerned. Any personal experiences? Thank you

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vickiaa0529's picture
Replies 32
Last reply 4/27/2016 - 12:46pm

Hi

I have to apologize in advance for a probably duplicate post. I know someone had a similar question and now I can't find it.

I am recovering from a groin lymp node dissection. It is not fun. Too make a long story short I had a WLE in Feb 2015. In Feb of 2016 my inginual node swelled and tested positve for melanoma. My pet/CT scan was clean and the dissection was clean expect for the inginaul node.

My prevention care option was Yervoy/IPI for nine weeks once a week for 9 week and then follow up. Or I can wait until June for Nivo. Also I guess I could wait and just do the scans. I am not a wait for it to coma back person.

Right now I am in Seattle and going to SSCA I am thinking of going back to Houston to MD Anderson for a second opion but I am also open to other places in the US for a second opinion. I lived in Houston for 25Years.

So far I am not hearing a lot of good things about Yervoy/ipi the side effects are scary.I am listening to the Webinar right now with Dr Luke that someone posted.

 

Thanks for any adivce

 

 

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Liisa's picture
Replies 3
Last reply 4/21/2016 - 1:52pm
Replies by: landonm, Liisa, Janner

Hi everyone!

I'm new to this forum, have been reading it for a while and decided to join since I haven't found anything alike in my native country (Finland). This seems like a wonderful place to get support and information.

I was diagnosed about a month ago with a melanoma in situ. It was in a new black mole at the back of my tigh a little above the knee. I've had the WLE done a week ago with 1 cm margins, haven't gotten the results yet. The cut has healed ok.

Now I've been experiencing slight pains in my tigh and groin, and I think I can feel a lymph node in the groin too. This pain started already after the original biopsy and has been coming and going ever since. I asked my doctor and he said it's nothing to worry about, and today I called an oncology nurse to ask again. She also said I shouldn't worry and that it's most likely just a reaction to the surgeries. I understand that melanoma in situ should not have spread to the lymph nodes and I'm trying really hard to believe that. But you probably know how the fear gets to you:( 

So I guess I wanted to ask if anyone has experienced similar kind of symptoms? Should I just wait and see how it goes or go to the doctor again. He practically laughed at me when I told about my concerns and said that don't you worry, this has been now dealt with. I sure hope so!

 

Have a nice day everyone, 

Liisa

 

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MELK's picture
Replies 5
Last reply 4/30/2016 - 7:13pm
Replies by: Issy, MELK, gm77, Momofjake

Hi All, 

This is my first post. 

I was misdiagnosed with stage IV breast cancer in August 2014, and put on chemo for 4 months. This misdiagnosis was because I had a tumor in my breast and it is very unusual for melanoma to metastasize to the breast. I also had lesions in my lungs, liver and bones. 

I was given Braf/Mek combo in January of 2015. It worked. Lots of my tumors were gone, only a couple in the liver remained. I was feeling really well. I had been doing lots of bush walking and going to the gym. I had gone back to work and was feeling great. 

In January, 2016, I went to the gym and the next day I thought I must have overdone it, as that’s what the pain felt like. After three days though, the Panadol were not working. I had really strong pain all around my rib cage, in my legs and my arms. I saw a GP to get some stronger pain killers and found out I had very low oxygen levels, so I went to hospital. 

My bloods were quite alarming. My haemoglobin and platelets were very low and my LDH reached 21,000. My oncologist and his team were puzzled. I also had some fluid on the lungs, which I had drained and analysed for any infection or cancer cells. No infection or cancer cells found in the fluid. I also had an MRI of my spine and a biopsy of my bone marrow. The cancer had gone into my bone marrow. At first my Oncologist thought it could be a completely different cancer, but it was determined it was the melanoma. Apparently it is very unusual that melanoma metastasize into the bone marrow. I not only had the cancer spread to my bone marrow, but I had more tumors/lesions in my liver and many in my thoracic and lumbar vertebrae and pelvis. I was on high doses of Oxycodone and I had to have several blood and platelet transfusions. Then I was put on Keytruda.

After a week or so and a few more blood transfusions, my bloods came right and I went home from hospital. I was there for 21 days. I was so not expecting “getting resistant” to look like that.

I am having some success with the Keytruda, although experiencing some auto immune of the liver and we are dealing with that presently. 

Mel 

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Anonymous's picture
Anonymous
Replies 19
Last reply 4/24/2016 - 12:22am
Replies by: jennunicorn, Anonymous, Polymath, Ed Williams, geriakt, Janner

So last month I was diagnosed with Mel in situ on my upper left arm.. Also a atypical mole over beside it.. So his plan was to remove the first remove stitches then remove the second.. Then a full body scan.. Scary and I've lost sleep I won't lie.. I also just had a 2 month old baby girl.. 

on my right arm on the underside about 4 inches below my wrist I have a small fatty lump.. I do data entry for a living.. For the past 16 years my arm has rested in this exact spot on the table while I type.. I assumed this lump was from that.. It's been there more than a few years.. Doesn't hurt.. I showed it to my derm today in light of the Mel on my other arm and he said he wouldn't think it was related to the Mel from my left arm but maybe I should go for a pet scan to check it out.. That alarmed me because from my obsessive googling the past month I've learned that's usually only done in stages 3 or 4.. Seems a little extreme for a small little lump.. But I don't know.. Just looking for insight.. Thank you

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Anonymous's picture
Anonymous
Replies 1
Last reply 4/20/2016 - 11:39pm
Replies by: Janner

Hi All,
I was diagnosed with superficial spreading melanoma on my shoulder blade/ upper right back almost four years ago. I had the wide incision and no other treatment. My scar has been pink however recently I noticed the top is turning brown. There us a brown line going halfway down the scar line with a small brown spot a little below the line
There is no pain or bruised feeling when I press on it. My question is for people that have had a reccurance what did it look like? I have been watching it since Saturday. It does not seem worse but it's not going away either. The only other odd symptoms I have is an enlarged thyroid in my neck (I am seeing s specialist for that tomorrow). Could the two be connected? I know the chances are small but should I be worried?

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Maxapooh's picture
Replies 4
Last reply 4/23/2016 - 11:01am

Hi everyone, 

My doc wants me to try a clinical trial with Abemaciclib ( LY2835219, Eli Lilly ) 

Has anyone heard of it? Any information will be appreciated. 

Maria 

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Hello and best wishes to every member on this board and their families.

I thought an update on my sister might be mutually helpful. Here's a quick rundown:

- started on Taf/Mek combo in Feb. - I posted then about fevers and other side effects she was experiencing

- she actually only lasted 2 weeks on a full dosage before side effects caused interruptions to treatment >> tried everything - dose reductions, stop & treat with steroids then resume again trials, Taf only at half dose, no Mek - none of that worked  

- the culprit that ended treatment was the rash she developed - a grade 3 and also considered an allergic reaction  (rashes seem particularly complicated) - her rash also did not respond to treatment, none of at least 3 creams they tried, anti-itch drugs and then heavy Prednizone 

- flipside of that is that the drugs were amazing - they were absolutely causing the mel to retreat and disappear - we were devastated when she had to stop but the plan then became to start her on ipi/nivo combo asap

- 4 weeks later, first signs that mel was on the move again became apparent

- 5 weeks later, first CT scan and, even with new growths appearing rapidly, her doctor was thrilled with the results as they showed huge reduction in the previously known tumours - there were new ones also, several smaller in her liver, (one bleeding in her kidney), one old that was larger (lung)  

- good news was that CT results did not reverse plan to start immunotherapy

- first infusion was last Thurs. (Apr. 14) - she was immediately extra fatigued and slept on and offer for the remainder of the day

- day 2 fever and headache (using acetominophen), appetite really dropped, some nausea (takes odazetron)

- has remained as above since, on and off - headache, fever, vomited today but this was only day 6

- several of her growths went crazy for a couple of days but one has already started going down again - have read on here that it's quite common - they are sore and painful though

- so far no rash, which is great!!

- I know it's early days yet - treatments are 3 weeks apart, first 4 with the ipi, then onto just nivo -- we also won't be surprised if she isn't able to complete all four 

She is really down about her syptoms but I believe it's evidence that the drugs are working. I am so thankful she is able to get this treatment and I have every confidence that she's going to have a great response!! I often wonder about the Taf/Mek >> if she might not have been a "complete responder" if not for the rash/allergy. 

If anyone has any suggestions on how I can keep her spirits buoyed, I'd welcome them! It's not so much that she's experiencing side effects - what really has her down is the overall effect of bad, aggressive cancer followed by aggressive drug treatments - she went from being an active gym member last fall to the point where she was issued a walker last month.

In just a few months, tumours invaded all skin levels, many bones and multiple organs, treatment kicked ass, which one doc told us made your body feel like it was "running a marathon" but then caused extreme side effects, steroids caused extreme and rapid muscle loss, her energy level went from pretty good to almost 'nil. She's very limited in what she can do and where she can go ... and sick and tired of being sick and tired ... 

Onto some reflections ... I've been on here all day - it's just that kind of site where the knowledge-bank can keep you for hours. It's been my number one source for everything I have learned about my sister's condition. I think I would be fearful for her all the time if it wasn't for the material I read here.

A couple of posts struck me today - one from Janner about being Stage 1 and still continuing to post and another discussing the new 5-year OS results just released.

The "resonance" of these two posts hit as I was deep in my research efforts and reading posts that were made back in 2011 and 2012 ... and it dawned on me that none of the names of the posters were familiar to me. I actually found myself going to the profiles of some of these people and looking for updates .. and finding nothing. I cried a few tears over this today ...

I'm so glad people like Janner continue to post. I wish others did, if they are still out there (Ed in Ottawa - I read everything you post - thank you!!). And I'm really grateful that, if mel had to invade my sister's life, it happened now and not five years ago. It does seem that hopes and promises are turning into reality.

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Hello and best wishes to every member on this board and their families.

I thought an update on my sister might be mutually helpful. Here's a quick rundown:

- started on Taf/Mek combo in Feb. - I posted then about fevers and other side effects she was experiencing

- she actually only lasted 2 weeks on a full dosage before side effects caused interruptions to treatment >> tried everything - dose reductions, stop & treat with steroids then resume again trials, Taf only at half dose, no Mek - none of that worked  

- the culprit that ended treatment was the rash she developed - a grade 3 and also considered an allergic reaction  (rashes seem particularly complicated) - her rash also did not respond to treatment, none of at least 3 creams they tried, anti-itch drugs and then heavy Prednizone 

- flipside of that is that the drugs were amazing - they were absolutely causing the mel to retreat and disappear - we were devastated when she had to stop but the plan then became to start her on ipi/nivo combo asap

- 4 weeks later, first signs that mel was on the move again became apparent

- 5 weeks later, first CT scan and, even with new growths appearing rapidly, her doctor was thrilled with the results as they showed huge reduction in the previously known tumours - there were new ones also, several smaller in her liver, (one bleeding in her kidney), one old that was larger (lung)  

- good news was that CT results did not reverse plan to start immunotherapy

- first infusion was last Thurs. (Apr. 14) - she was immediately extra fatigued and slept on and offer for the remainder of the day

- day 2 fever and headache (using acetominophen), appetite really dropped, some nausea (takes odazetron)

- has remained as above since, on and off - headache, fever, vomited today but this was only day 6

- several of her growths went crazy for a couple of days but one has already started going down again - have read on here that it's quite common - they are sore and painful though

- so far no rash, which is great!!

- I know it's early days yet - treatments are 3 weeks apart, first 4 with the ipi, then onto just nivo -- we also won't be surprised if she isn't able to complete all four 

She is really down about her syptoms but I believe it's evidence that the drugs are working. I am so thankful she is able to get this treatment and I have every confidence that she's going to have a great response!! I often wonder about the Taf/Mek >> if she might not have been a "complete responder" if not for the rash/allergy. 

If anyone has any suggestions on how I can keep her spirits buoyed, I'd welcome them! It's not so much that she's experiencing side effects - what really has her down is the overall effect of bad, aggressive cancer followed by aggressive drug treatments - she went from being an active gym member last fall to the point where she was issued a walker last month.

In just a few months, tumours invaded all skin levels, many bones and multiple organs, treatment kicked ass, which one doc told us made your body feel like it was "running a marathon" but then caused extreme side effects, steroids caused extreme and rapid muscle loss, her energy level went from pretty good to almost 'nil. She's very limited in what she can do and where she can go ... and sick and tired of being sick and tired ... 

Onto some reflections ... I've been on here all day - it's just that kind of site where the knowledge-bank can keep you for hours. It's been my number one source for everything I have learned about my sister's condition. I think I would be fearful for her all the time if it wasn't for the material I read here.

A couple of posts struck me today - one from Janner about being Stage 1 and still continuing to post and another discussing the new 5-year OS results just released.

The "resonance" of these two posts hit as I was deep in my research efforts and reading posts that were made back in 2011 and 2012 ... and it dawned on me that none of the names of the posters were familiar to me. I actually found myself going to the profiles of some of these people and looking for updates .. and finding nothing. I cried a few tears over this today ...

I'm so glad people like Janner continue to post. I wish others did, if they are still out there (Ed in Ottawa - I read everything you post - thank you!!). And I'm really grateful that, if mel had to invade my sister's life, it happened now and not five years ago. It does seem that hopes and promises are turning into reality.

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My mom was diagnosed with melanoma about two years ago. A few months ago, I was diagnosed with juvenile melanoma. We are both constantly worried that we might miss future issues.

I am studying Computer Engineering and have been inspired to gather a team of people to develop some way to monitor skin changes indicative of Melanoma. Often times, I have noticed that I tend to be inconsistent with monitoring my own health. Furthermore, it seems that doctors have a hard time noticing minute changes on the skin during the few times I visit within the year. I want to change this and I need everyone's help

Below is a link to some questions that we’ve created and we need the input of as many people as possible. Answering any of the questions will help us with the development of the technology.

 

We greatly appreciate any input.

 

ChrysalisScience

or

https://docs.google.com/forms/d/1AHnzlU_Y_Rz3qN243pbqHR0xBRLpXKu6o5lYJbA...

 

Thank you!!!

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Coach337's picture
Replies 11
Last reply 4/22/2016 - 12:35am

Stage 3c.

Partial lymphadenectomy of groin.

 

Started adjuvant treatment with Yervoy.  Was fine for four days, then had a few minor hiccups: itchy eyes, blurry vision, fever, chills.  Nothing too serious.  Then, out of nowhere - bam!  Developed colitis which hit me hard for about 5 weeks.  Doctors prescribed prednisone (and diphen/atropine), and continued to increase my dosage until it kept the dysentery in check.  

As soon as the colitis became somewhat manageable, the steroids were SEVERELY kicking my butt: insomnia, weight gain, insatiable appetite, muscle fatigue, cramping, and headaches.

So basically, that's where I'm currently at.  Ramp up the Prednisone and I get those nasty side effects (but no colitis), or the reduced prednisone dosage (with fewer side effects) but the colitis returns.  

So frusterated!  I haven't slept more than 3 hours at one time in over a month, and it's slowly starting to take its toll on me.

Has anyone experienced anything similar, and what eventually got you through it?

 

Thanks!

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lastexit470's picture
Replies 13
Last reply 4/23/2016 - 1:41pm

About 6 weeks ago, my wife was diagnosed with metastatic melanome in her right groin lymph node.  She underwent a CLND 3 weeks ago.  They removed 10 lymph nodes, only the one came back positive for melanoma.  Both our doctor here in Columbia and Siteman in St Louis have given us two choices.  Do Yervoy or do nothing.  Both doctors have said their advice would be to do nothing.  They have said she has had best case since she just had the one lymph node come back positive and there is a good chance they got it all.  Also, this is an unknown primary.  They have stated Yervoy has some very serious side effects that could be very detrimental to her body, and has a 5% mortality rate from the side effects.  

You are all very experienced, what are your thoughts?  We are leaning towards doing nothing but we want to make the right choice for our 3 little boys and our family.

 

Thanks!  Doug

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