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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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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delora's picture
Replies 9
Last reply 7/7/2014 - 12:19pm

A month ago, I went in for my routine PET scan.  My breast and ovary lit up.  After a breast biopsy, they determined that the melanoma has spread to my breast.  I haven't had any tests on the ovary.  I have an appointment at Duke Cancer Center on Monday.  From our phone conversations, the Dr doesn't want to do surgery to remove the melanoma.  I am assuming I'll be going straight into treatment.  I already had interfeion, which was awful.  Has anyone else had this experience?  Any advice?

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BrianP's picture
Replies 6
Last reply 7/15/2014 - 12:44am
Replies by: RJoeyB, BrianP, CHD, Maureen038, Anonymous

Just found out my uncle was diagnosed with muscal melanoma.  I'm not as familiar with muscal melanoma as I am with your everyday run of the mill melanoma.  Few questions I have if anyone can comment on:

Is there anywhere and anyone in particular that specializes in or is know as "the place" for muscal melanoma?  I've heard Dr. Hodi and Farber is pretty experienced with muscal melanoma.  He's currently located in Virginia so probably limited to the east coast.

Current thinking doesn't put a high value on chemo and radiation (other than in combination with immunotherapy) for most melanoma but is that not so with muscal melanoma? 

I heard that muscal melanoma isn't as responsive to Ipi as other melanoma (something like only 7%).  Does anyone know if this is true.  Has it been anymore responsive to anti-PD1?

 

Thanks for any advice or information anyone can provide.

Brian

 

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kellygrl's picture
Replies 7
Last reply 7/7/2014 - 10:12am

My husband was diagnosed 2.5 yes ago with brain mets (13 tumors).... treatments have been:
WBR
Zelboraf 14 mos
Gamma x 2 (about to do a third)
Dabrafenib/trametenib currently while also receiving Yervoy
Latest results.. brain tumors are shrinking and/or stable!!
Never give up hope!! Keep a positive mind and attitude!!

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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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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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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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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
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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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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CHD's picture
Replies 8
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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Anonymous's picture
Anonymous
Replies 1
Last reply 7/28/2014 - 5:36pm
Replies by: natasha

Hi,

I had a mole removed a month ago and was diagnosed with invasive superficial spreading malignant melanoma.  I went back a couple of week later for a wide local excision and I had the stiches out 2 weeks ago.  I have just managed to get a copy of my first pathology report and it says the following:

Ellipse of skin measuring 16x7mm with 4mm of underlying tissue.  On surface there is a slightly raised roughened pigmented area measuring 5x5mm

HISTOLOGY

The sections show skin with underlying adipose tissue and containing invasive/vertical growth phase superficial spreading malignant melanoma.

It is predominantly in situ but there is focal regression.  The small amount of invasive melanoma has a Breslow thickness of 0.4mm and infiltrates the dermis the Clark's level II.

No vascular invasion is seen.

There is a moderate tumour associated lymphoid infiltrate.

Dermal mitotic figures are not seen.

There is no surface ucleration and satellite lesions are not present.

The lesion appears completly excised with the nearest transverse margin at 2mm and the deep margin at 4.5mm from the invasive component.

I have a couple of questions and would appreciate it if anybody could help me:

1. Does Invasive and Vertical Growth Phase mean the same thing?

2. If it has had regression, does that mean it could have been deeper before my immune system attacked it and therefore could have already gone elsewhere?

3. It says the deep margins is clear by 4.5mm but it says only 4mm of underlying tissue was removed and if bresolow thickness 0.4mm  then that doest add up exactly.

4. Should I have had my glands checked as I havent and I will be getting them checked in 3 months time?

I may be looking in to this all too much but ive felt so unwell with asthma and stomach pains, it makes my imagination run away with me and I start wondering if its maybe something worse.

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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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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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