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 5
Last reply 7/6/2014 - 5:59am
Replies by: Kim K, Anonymous, washoegal

CT found questionable areas on chest wall and axilla, surgeon said too small to worry about. This exam I found small enlarged nodes by my collar bone - again surgeon said too small to worry about. I'm thinking of just opting out of scans and visits until something just jumps out. One year out from initial dx IIIB, mitosis 18, one positive lymph node.

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Anonymous's picture
Anonymous
Replies 3
Last reply 7/5/2014 - 3:46pm
Replies by: Bubbles, Socks

I'm a little confused about this, I know it limits some treatment options. Is this a good thing or bad , does it changes recurrence chances.

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CHD's picture
Replies 6
Last reply 7/5/2014 - 12:29pm

Hi,

As someone who's been dealing with vulvar melanoma since May of last year, told my prognosis is poor (though determined not to live my life in fear based on statistics), I sometimes wonder what the surgeon/oncologist mean when they say come in if you experience anything unusual.  I wonder this because my own melanoma was essentially asymptomatic and hidden so well, I only noticed a small amount of itching, and by that time it had already grown to 2 x 3 cm.  If your melanoma has metastasized, I was wondering today if you would mind sharing some of your experiences with this.  If the metastasis is internal, ARE there unusual symptoms? 

What stage was your original (primary) melanoma?  Were lymph nodes involved?  How long between the original diagnosis and the spread of the melanoma?

Most of all, I am wondering what kind of symptoms you had developed, if any, when the metastasis was discovered?  If internal, were you symptom-free?

If not, did you develop pain in a certain area?  Headaches, body aches, some other unusual symptoms?  

Or was it found on routine PET-CT screening?  Was it found accidentally on some other diagnostic test?

Based on my own experience, it is hard to imagine that if my melanoma progressed, I would have any recognizable symptoms at all, at least not right away.  Or would I?  It's kind of unnerving.

Cheri

 

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Ginger8888's picture
Replies 2
Last reply 7/5/2014 - 8:47am
Replies by: Ginger8888, Anonymous

I've been reading that people are getting 3mg of Yervoy and i just looked at my report and it says i'm getting 200mg..I'm confused....Can anyone help me figure this out?..200mg seems like a lot compared to the others..

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Ginger8888's picture
Replies 7
Last reply 7/5/2014 - 12:47am
Replies by: Ginger8888, jogo, Rod, LuckyMan51, Anonymous

I just finished my second treatment of Yervoy today, hoping i handle it as well as i did the first round..Anyone have any advise? Currently stage 3C

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Anonymous's picture
Anonymous
Replies 6
Last reply 7/4/2014 - 10:03pm
Replies by: BrianP, Anonymous, Gene_S, shanemcdonald99

Just came back from an appointment with the local oncologist who administered my chemo (I am a patient at Sloan). He told me that melanoma can possibly be cured at stage 3 by chemo but if it hits stage 4 it is not considered curable. Since the recurrence rate is so high does that just mean that dying is the only option when the scans come back positive?

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Anonymous's picture
Anonymous
Replies 12
Last reply 7/4/2014 - 9:36pm
Replies by: Anonymous, Ginger8888, BrianP, sweetaugust

After doing so much reading on melanoma after being diagnosed stage 1b- does your immune system truly help fight off melanoma?  It seems that there are so many contradictory statements.  Also- if your immune system is healthy- could it kill any random melanoma cells that may be floating around in your body still?   I'm just trying to grasp all of this.  

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uhoh's picture
Replies 2
Last reply 7/4/2014 - 8:55pm
Replies by: uhoh, Janner

I had a wide excision today on my right deltoid fpr a superficial spreading melanoma. The biopsy staged it at 1a. Some ulceration was present today where the biopsy was taken that was not present before. There has been no indication of lymph node inovolvement. No nodes were sampled or removed. 

I know not to get the wound wet for 2 days. And I need to keep my arm/elbow/hand elevated above my heart. But I can't remember how long I am supposed to keep it elevated. Can anyone point me to postop instructions that mention length of elevation with no lymph node involvement?

Thanks!

 

 

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ecc26's picture
Replies 2
Last reply 7/4/2014 - 6:47pm
Replies by: ecc26, arthurjedi007

Hello everyone,

Not sure if anyone out there can help me on this, but I have a side effects question:

I was on the BRAF/MEK combo all winter, which meant I didn't spend a whole lot of time outside most of the time I was on the drugs. They began to fail in May and by that time I had noticed that I had developed photosensitvity (sun sensitivity) as a side effect. That wasn't terribly surprising, but they combo began to fail in May, I had a 1 week washout, then began the Merk PD-1 EAP. I just got my second dose this past week and so have been off the combo for 5-6 weeks. I still seem to have some photosensitivity, as well as some folliculitis (basically body acne) on the backs of my legs. I have not found anywhere that states that these are possible side effects of PD-1, so I am assuming they are leftover from the combo. 

My question is: has anyone else had lingering side effects after coming off the combo, and if so how long did they last?

Thanks for reading!

 

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Anonymous's picture
Replies 3
Last reply 7/4/2014 - 11:53am
Replies by: Bubbles, Anonymous

http://www.healio.com/hematology-oncology/melanoma-skin-cancer/news/online/%7Be031bb22-0506-4216-bb0c-6ae56273e834%7D/primary-melanoma-regression-not-linked-to-sentinel-node-status

 

Histologic regression in primary melanomas ≥0.75 mm was not associated sentinel node involvement, according to results of a retrospective study

 

The findings suggest that sentinel node biopsy in thin melanomas with regression may not be appropriate without additional adverse prognostic factors, the researchers wrote.

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uhoh's picture
Replies 9
Last reply 7/3/2014 - 10:42pm

Hello,
My new PCP wants me to be seen asap for a suspicious melanoma and not even wait the usual 3-4 months for an appointment. I have had this lesion for years and I can't remember how or when it may have changed. Due to another cancer I have just completed treatment for, this PCP is not ignoring the potential for another cancer. The good news he said is that I've had this 'whatever it is' for years now (ignored several times by another Dr I showed it to), but we know now that I am one who already has had cancer. 

There is a near by plastic surgeon at a community hospital who has multiple openings in his schedule. I like community hospitals and docs. I also want the best diagnosis and treatment. I live a few minutes from an NCCN center where I already see a gyne oncologist.

So far I do not have confidence in the plastic surgeon I have an appointment with. Funny, that I had a choice of appointments for the following day and several other optins for the next few days is somehow not comforting. The plastic surgeon has not published in around 30 yrs and I know that should not indicate his skill and knowledge, but I can't find anything about this Dr except that he is licensed.

How important is it that I see a specialist for an initial consult? How important is it for a specialist to perform a biopsy, or excision? Is the Mohs procedure done on flat upper arm lesions? Would a Dr do a biopsy first and then decide on excision vs Mohs?

What are some questions I might ask during the first consult. I am not even sure if I'll keep the appointment or try to find another Dr. first.

Thanks.

 

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Hi guys,

Who will be the winner of this competition?

As long as you are whith those drugs much better for you....

 

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Anonymous's picture
Anonymous
Replies 1
Last reply 7/3/2014 - 11:59am
Replies by: Janner

I have 3 large moles on my back, they have been there as long as I can remember so I assume I was born with them. However, one of them had started itching so I went to the Doctor's yesterday and he said that the itching was not a thing but that my moles were too dark and I had to get them removed.

He removed the itchy one yesterday and sent it for testing and I have to go back next week to get one of the others removed.

I have a band-aid over the removed one now but it is still kind of itchy and I don't know if this is because it was removed and is healing or what??

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Anonymous's picture
Anonymous
Replies 2
Last reply 7/2/2014 - 1:45pm
Replies by: mbaelaporte, Anonymous

I have stage 4 and have stopped working for about 6 months, currently on the GSK combo. I have successfully obtained copay help through Chronic Fund foundation, for those of you needing help with prescription copay, their approval process is 24hrs. I submitted online application, 2 days later, I was approved. For those of you needing financial help, this is a good place.

I am unsure where to go for help with my mortgage? I don't know if I should tell my lender about my diagnose, I am still current on my mortgage, but finding it harder & harder to make the payments. Has anyone reached out to their lender and obtained a successful outcome?

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Erin_Elizz's picture
Replies 9
Last reply 7/2/2014 - 12:04pm
Replies by: Erin_Elizz, sweetaugust, 5dives, Linny, Anonymous

Hi everybody, sorry for the long post but I would really appreciate some help

I'm having issues with my mentality and emotions right now and I could really use some help or suggestions for dealing with the situation.

A bit of background on me first, I am a twenty year old, happy go lucky university student who does not tan and has no family history of melanom but was diagnosed with a stage one, clark level 4, 1mm deep nodular melanoma on my arm last month.

Trailing a very difficult year abroad, health wise, my melanom diagnosis was just the icing on the cake. I had been studying in London since September 2013 and experienced my first food poisoning, lady issues, two sprained ankles, my first concussion, post concussion syndrome and a family death all within the nine months of my stay. In the last twp weeks of my stay, I was sent to the dermatologist by my GP and they did an immediate excision of the mole, stating that it could not wait for me to arrive back in the states. I was a bit shaken with the sudden in office surgery as I only had thirty minutes, an international phone call to my mother, and four shots of local anestetics to prepare before I was put onto the table with a knife at my arm, but after they finished the only concern I had was how I was going to pack while my arm was stiched up. At that time, the biopsy was the least of my concerns.

Fast forward two weeks later to June 9th, the day before I was sue to fly home: I was called into the office to pick up the slides in order to transport them back to my American doctors. I knew something was up because the doctor called in another doctor right before I was called into office. They gave me the diagnosis; nodular melanoma, and told me that if I were remaining in the UK they would want more surgery due to the clark level of my mole and the fact that at 1mm, I was right on the border of stage 1 and 2. Since I was going back to the US, however, it would be up to the home doctors whether or not we took these further steps.

Now, at this point, I did not even bat an eyelash. I'd done my research (History major in me), and I knew what everything they said meant. I was going to be fine. On June 10th I was on my flight home, and by the weekend I had already had three doctors appointments to review the results and schedule my surgery. (I also had a breast cancer scare, but those results thankfully came back clear, so that worry has now settled).

It is now almost a week after my surgery and it seems like everything has just decided to come crashing down on me. I don't know if it is the struggle of the recovery, the medicine, or the inactivity but all of a sudden my usual happy go luckiness has gone down the drain. When I speak about my situation to my family or boyfriend, I sound like I have a clear head and no worries, as I should at this moment. However, I find that I just can't smile like I used to.

While part of the reason may be because I've been taking the time to browse floppy hats and sun parasols in my down time, with the realization that everything had changed now, the other part of me is frustrated that I cannot seem to be logical about this. There are so many people with worse cases, who have reason to be scared yet are being so much stronger than I am managing to be at this moment. I was being strong, I was handling it well, but now, despite almost being in the clear, I am scared, angry, and so many other emotions that I cannot express to my family in order to keep them from worrying.

 

I wan to be me again, I want to be happy. I don't want to feel as if any self confidence I ever had has been squashed or that I'm all alone when I know I'm not. I want to be strong again. I just don't know how. Anyone have any suggestions?

 

Thank you!

Erin

 

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