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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Patina's picture
Replies 3
Last reply 1/24/2017 - 1:06pm
Replies by: Anonymous, cancersnewnormal

A recent article in Cell Metabolism showed that BRAF V600E mutation will grow faster in response to a high fat diet.

I've heard something similar to this reported before and my Mom's doctor had recommended reducing glutamine, if possible. - My Mom didn't try it.

Another article: Right on Target: Glutamine Metabolism in Cancer

 

 

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snow white's picture
Replies 10
Last reply 1/25/2017 - 10:57pm

Dad saw the infectious disease doc today.  Doc does not feel he has fungus, but they will test the spinal fluid for it along with the LMD.  He goes tomorrow for the spinal tap.  In the meantime, Dr. Freeman (Hamid) wants to start Dad on Ipi (Yervoy) possibly next week.  My mom was a bit freaked out when she read the side effects, death being in the first paragraph.  But, i told her that all drugs have side effects, don't read the side effects, deal with them as they come.  So my mighty Warriors, what do you think of this plan?  Is this the expected next step after 5 treatments of Opdivo?  What do I need to know? anything to look out for? Dad tolerated Opdivo with hardly any side effects.

Any and all thoughts would be greatly appreciated.  Of course I am feeling a bit nervous about anything new, but I also know that we must move ahead with treatment in order to kill the Beast.

xo Jen

Jennifer-- Dad has stage IV Mel. No primary. Treatment: Gamma Knife,15 brain mets, Craniotomy to remove 3 large tumors in brain. Receiving treatment @The Angeles Clinic

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sarah.brannon's picture
Replies 1
Last reply 1/23/2017 - 11:51pm
Replies by: Christinad

I finished a year of Interferon 09/30/16. Since then, no periods. My cycle was normal while on the medicine, but nothing since. I thought maybe I was in early menopause, especially since I was having (severe) night sweats and hot flashes. My gynecologist (specialty is cancer in reproductive organs) prescribed a birth control pill with a higher estrogen amount to help with symptoms, which it did.

Got the bloodwork back today, results via phone call, I am not experiencing hormonal menopause, but that it could still be an ovarian problem...

Has anyone else experienced this?

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Is anyone in need of these amazing drugs? They are incredibly expensive and very effective. I have two bottles with only one dose taken from each, I'm pretty sure. I have kept refrigerated. I refuse to throw them out.

Please, if someone needs, let me know.

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Aloha14's picture
Replies 5
Last reply 1/25/2017 - 7:32pm

Today I had the seromas drained again (2ne time) and this time the surgeon was more aggressive about it~meaning she went in from different angles and also drained a 4th one that I thought was either muscle spasms or scar tissue. That was 5 hours ago and even with a compression bandage and compression shorts, it's almost filled up again.

I don't understand why my body can't drain this stuff?

Next the surgeon wants me to get a repeat ultrasound so she can look at the seromas again since the draining. I may have to have radiology drain these while under ultrasound rather than having the surgeon just use a still picture. 

 

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jahendry12's picture
Replies 5
Last reply 1/25/2017 - 1:20pm

First I want to thank you all for the tremendous sharing of information there is on this site.  I come here quite often to do research and obtain info.

A few question for those of you that have been on this combo:

1)  How long did it take for the side effects to beging?

2) Has anyone ever had minimal side effects?

My husband just started this combo over the weekend and I'm watching him like a hawk.

Any info would be greatly appreciated.

Thank you!

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Just checking in to see how things are going?  Thinking of you both everday, hoping a plan of action has been put in place.

xo Jen

Jennifer-- Dad has stage IV Mel. No primary. Treatment: Gamma Knife,15 brain mets, Craniotomy to remove 3 large tumors in brain. Receiving treatment @The Angeles Clinic

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Chelle19's picture
Replies 5
Last reply 1/23/2017 - 8:08pm

I had a mole on my upper left arm that I had been suspicious of for a few years now. I have had moles removed before for cosmetic reasons and dont know why I never requested this one to be removed. For years people have been pointing it out and saying I should get it checked. Multiple doctors looked at it and would say its fine even though I would say I think it's getting bigger. I  wish I had just followed my gut instincts and had it removed but too late now. I had been meaning to get it checked for months and finally did early January when I was at an appt for my severe anxiety and depression. Again I swore that it was getting bigger. This time my doctor said we would biopsy it and referred me to another doctor in the clinic.

Long story short he referred me to a dermatologist but it was a 3 and a half week wait so I went back into his office and requested he remove the thing entirely and he books me in for a couple days time. Looking at it he said it is probably only 10% chance melanoma but best to get it removed if I'm paranoid. A week later I go in for results and it's melanoma. ( I kinda knew though as I had missed the appt and they rang me to tell me I needed to come in. I was told by my original DR they had got it all and I requested the pathology report to go over with my brother in law who is a surgeon. ( So glad I remembered to get the report before I left or it would of been a long night of horror not knowing exactly what I was looking at ) From the report they hadn't got it all. The next day I went back to the gp who removed it to get a referral to a melanoma clinic as my brother in law suggested and he told me it was in situ. I had to tell him, no it's invasive... clarks level 3. He didn't know what a clarks level was, I googled it for him. He didn't give me the right referral and I have to go back again tomorrow and try to get the right one. I found out Friday night and have been sick with anxiety, cant sleep... just dozing off here and there and waking up startled believing I'm dying. The report is pretty good, it's the regression that has me sick with worry and the fact there is still tumour in my arm. I have also had symptoms the past few months that are not normal for me that I have googled and of course it's cancer to the internet. I also have a sore right armpit presently so I'm  terrified. Over the past few days I have spent my time on here reading posts. I know I should stay of the internet but this site has helped. Sorry for the babbling, with my anxiety I tend to over share lol

Here is my pathology report.

Diagnosis:
Skin excision, left deltoid:
- Superficial spreading melanoma, 12 mm
- Clark level III, Breslow thickness .47 mm
- No ulceration; mitotic rate less than 1/mm2; ( insufficient intradermal tumour for proper count )     -Regression present
- Peripheral margin involved

Host immune response: Present
Regression: Present

Microsatellites: Absent
Vascular Invasion: Not identified
Perinueral Infiltration: Not identified

Predominant cell type: Epithelioid
Desmoplasia: Absent

Association with a coexistent Benign Melanocytic Lesion: Absent

Margins of  Excision:
-Tumour extends to superficial
-Deep excision margin 3 mm

Thanks so much for your time

Michelle :)
 

 

 

 

 

 

 

 

 

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sweetaugust's picture
Replies 7
Last reply 1/24/2017 - 12:16pm

Hi there,

Just wondering if anyone out there seems to have developed joint pain and rash patches on the skin that could be psoriatic arthritis as a side effect of Pembro (Keytruda)?  I've been on Pembro for almost 4.5 years now for my stage 4 melanoma.  Last year I developed a rash patch on my scalp that itches and burns and joint pain that has never really gone away over the past year.  I'm worried that if I continue on the drug, that the joint pain and arthritis will only get worse and will not be reversible.  Thoughts?

Have any of you been on Pembro (Keytruda) for this length of time and what are your doctors recommendations for length of remaining on treatment?  What are your side effects this far out?

Have any of you come off Pembro (Keytruda) and the cancer has returned?

Thank you so much and all my best,  Laurie

 

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Anonymous's picture
Replies 4
Last reply 1/26/2017 - 11:02am
Replies by: Janner, jennunicorn, Anonymous

Hello,

I already posted yesterday but i am very confused. I have a very high risk of getting melanoma once of multiple times in my life (p16 gene, just discovered).

I always if I watched my skin very closely and be vigilant, I wil catch it very early. But yesterday I was researching some stuff, and discovered that a mole can exist in the dermis too.

All of a sudden it feels like it doesn't matter anymore, because when a mole like that starts to turn into melanoma, and it is already 0.7 deep for example, I have a melanoma of that depth immediately.

Am I right?

I am sorry but I'm freaking out. It is feeling like I don't have control over the situation anymore. I just found peace by having this high risk, the thought of catching it early gave me some control. Now that is gone, because  I don't know if one or more of my moles are also in the dermis...

 

 

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Abbygx2589's picture
Replies 7
Last reply 2/15/2017 - 3:46pm

Hi everyone,

This is my first time posting but I read the boards here all the time. Thank you to every one who posts and supports each other. I am writing about my father who was diagnosed as stage IV last March (2016) after being diagnosed with stage 2 melanoma 17 years prior. We discovered it through a chest x-ray last winter , after his doctors had ignored his subcutaneous lumps for about a year, calling them lipomas. After all of the intial scans, we found out he had spots in his muscles, lung, pancreas, and multiple spots in the brain. He underwent cyberknife and began the ipi/nivo combo last spring in a clinical trial at BIMDC in Boston. He has shown response which is great and we are so thankful for- a 33% reduction in tumor size across the board- including the brain. After his last combo in July he became very sick and discovered he his pituitary had stopped producing cortisol so he now takes a low dose daily to make up for this. It is hard to believe he has stage IV cancer with how active and normal he seems. Anyway, finally, the reason I am writing is because his last scans were stable, the tumors did not shrink. This is the first time that nothing has shrunk. Has anyone had experience like this?  I am so afraid that the next scans will show growth. Have others experienced regrowth after shrinkage has turned to stability?

Thank you all so much

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Anonymous's picture
Anonymous
Replies 3
Last reply 1/23/2017 - 7:46am
Replies by: Ed Williams, Anonymous, Janner

Hello

I am a little bit confused so I hope someone can answer my question.

Does melanoma always starts in the epedermis?

I know that some moles are also in the dermis. When they change in melanoma is it than immediately an invasive one? So it skips the in situ part?

I hope this makes sense (I am not a native speaker)

Wish you al the best

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Spl25's picture
Replies 3
Last reply 1/22/2017 - 6:42pm

So today marks 6 months since getting diagnosed with stage IV mel for me. The disease was very widespread when we found it, but I've had no bulky tumors as of yet. I've had a good response to treatment (PD1, XRT, femoral nail), and can only hope that continues. I'm still learning how to deal with docs (my opinion: good brains, good hearts, crappy systemic incentives), and am getting better at the emotional roller coaster so many of us are dealing with. But enough about me:

This board is chock full of compassionate, smart people who are tough as nails. There's real wisdom on here too -- wisdome of the kind most medical experts just can't offer. I'm not very active in posting on here, but following along with all of you has incredibly important to my own mel experience, which would otherwise be a much lonelier one. Thank you all so much for sharing your trials (clinical and otherwise), tribulations, and triumphs. 

Much love, and much hope sent your way. I hope I can contribute more in the future.

"There is no love of life without despair of life."   

 

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45_dps's picture
Replies 8
Last reply 1/29/2017 - 5:45am

Hi,

[First posts are always tough because I'm searching for answers but not providing benefit to others.]

My melanoma was diagnosed on Monday January 16, 2017, so I am very early in my understanding of everything. My doctors are great and are helping me at every step/day of the way.

My melanoma was diagnosed based on a lymph node excision (neck area below the ear) which tested positive for melanoma. The lymph node had been swollen for a few months and had not responded to antibiotics, so the belief was it may show a positive result for Lymphoma (that was the reason for the excision).

My question to others with knowledge or experience is this: what if no skin-based source for the melanoma is found? Is that a common occurance?

(Dermatologist did a full body review on Jan. 18th. Four moles were removed but tested negative (normal).

(Opthamologist appt will be on Jan. 26th to check for ocular melanoma).

(PET scan with CT scan on Jan 19th with no signs of melanoma elsewhere in my body. Also MRI of the brain was negative (normal).)

Thank you!

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Anonymous's picture
Replies 3
Last reply 1/22/2017 - 4:25pm
Replies by: Bubbles, Anonymous

Mine are consistently just slightly below normal (about 1.4, 19% of total WBC) and have been for months. Is this common?

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