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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Hukill's picture
Replies 7
Last reply 8/11/2017 - 11:44am

In June I was told I was in remission after 14 months of nivo/ipi combo and ipi alone. I had another scan last friday and now being told NED!!!!!!!!!!! Don't know if there is much difference between remission and NED but it just sounds better. I still get ipi every other week and dealing with multiple side effects but small price to pay for no melanoma. Vitiligo is still spreading, started on hands and arms but has moved to ankles and knees, love it as it is a positive sign.

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jagstter's picture
Replies 7
Last reply 8/11/2017 - 10:35am

After way too long, I've finally registered & am making my 1st post. Yay! I feel like I am so much better-informed, due to many of you on this forum ... thank you, all. My hope is to be able to beneficially contribute & help others, who may be struggling in this terrible battle.

I tried to put all the pertinent details in my Bio & Profile ... I'm a classic case of learning via the "School of Hard Knocks," LOL. If I can help someone else avoid making the same mistakes, I'll truly be glad ;-)

I travel to MDA for treatment & just learned I likely have numerous metastases from my primary (July 2015 - Right Posterior Trunk, Clark's Level IV, Breslow Depth 4.0mm, Ulcerated, Lymphatic & Circulatory Invasion, w/ a Mitotic Rate of 33!) to both lungs. Radiologist cites, "Numerous bilateral pulmonary nodules in both lungs, up to 8mm" & provides 5 for example: 6mm, 7mm (2) & 8mm (2), all w/ ground glass attenuation. I've had no previous nodules on prior PET/CT or Full-Body CT scans, going back about 2 years, now. The doctor suggested exposure to hazardous materials or pneumonia (nope!) & agrees there is high probabilty it is, indeed, Metastatic Malignant Melanoma. I am scheduled to go back in mid-December for a 2nd Full-Body CT scan for confirmation. Hoping it is viral but I have no symptoms to suggest. Also, I'm 12 days in on Bactrim regimen for Prostatitis, which would have knocked out any bacterial infection potential. I hate the wait, the prospect of progression, biopsy, drugs ... it is very overwhelming :-(

Hoping & praying for patience, while I wait. Thanks, for reading & allowing me to be a part of this great group!

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zfishberg's picture
Replies 5
Last reply 8/11/2017 - 1:40am

Hello!

wanted to check whether there are any patients that were treated with PD-1 inhibitor (Keytruda) in parallel with BRAF inhibitors ( Taft/Mek or Taff alone).

For example - Keytruda once in 3 weeks,

taffinlar - during 2 weeks between the infusions

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Hi everyone, hope yer well and kickin but through treatment. I just wanted to check in & let you all know (if you dont know already) about a real good, new program on television called First In Human airing on the Dicovery Channel. Its hosted by none other then Jim Parsons of The Big Bang Theory (which is a great pick for a host!...Did i mention i split open my last surgery? A week after staples where out, i knelt down & split! I thought it was my shorts lol..so, treatment is delayed because of it as i attend the Wound Clinic twice a week for cleaning and packing/wrapping...just great..ill kerp ya posted, i see my Oncologist Monday...take care..Mike...

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Anonymous's picture
Anonymous
Replies 5
Last reply 8/10/2017 - 11:47am
Replies by: Anonymous, Sharon93065, Kootenay Kid

Hi, I'm new to the forum since it's 2 weeks that i have been completely stressed out about a biopsy i had on July 27. They told be the results would be available in 3-4 weeks ... today I got a letter in the mail saying my appointment is on September 7 th !!! This is 6 weeks before I will hear back and I can already anticipate the next 4 weeks of waiting are going to be worse then the last 2.

Attaching a photo does not seem to be working but is it possible that it is nothing ? Would I feel something specific if it something more advanced? Any advise on what I should pay attention to would help.

Thanks!

 

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jason1635's picture
Replies 16
Last reply 8/9/2017 - 11:46pm

First, thank you for all the helpful and informative posts on this ebsite.  It has helped me become educated while I wait through diagnosis and start of treatment.

 

I recently had two moles biopsied through a shave biopsy at .5 cm x .4 by.1 cm deep (bisected?).

The nurse called me and advvised me to schedule surgery for melanoma with a general surgeon.  Today the surgeon shared my path report but not so much detail on diagnosis or prognosis, just surgery technique and standards.

The first mole states atypical proliferation of junctional melanocytes:  Favor melanoma in situ evolving from compound calrk nevus. lesion extends to all margins, deeper sections have been examined.  Proliferation og atypical menalocytes at dermoepidermal junction. Melanocytes are large and unevenly placed abd crowded in foci .  second population of smaller uniform melanocytes in the dermis and epidrmis associated with dermal fibroplasia.

2) #2 mole stated unusual because some junctionalmelanocytes are slightly enlarged and heperchromatic and within epidermis and papilary dermis proliferation of solitary and nested melanocytes associated with dermal fibroplasia around rete ridges.  in foci, melanocytes are large and hyperchromatc..

Thank you to all who read and can help, surgeon not really well informed on melanoma, should I ask dermatologist to do WLE or hang in there.  He advised general anethesia, hs anyone just used local and been okay.  Thanks for help on what this is and what to expect next.  This was a scary surprise and trying to learn more about these moles and others I may need taken off.  Work for military and had been overseas several years without a check up of skin in tropical/desert areas. Again THANK YOU and best wishes to all. J

jason

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Anonymous's picture
Anonymous
Replies 1
Last reply 8/9/2017 - 11:31pm
Replies by: Kootenay Kid

My husband sees the general surgeon tomorrow to check out the odd spot on his thigh.  Meanwhile, the spot on my inner lip has grown slightly and is darker, but I don't see the dermatologist for a few more weeks.  I keep thinking she will just refer me back to the surgeon.  Also, in my eye exam last week, the doc told me I had a new "freckle" in one eye.  Now I am worried that that could become melanoma.  I am almost 64 with fair skin and a history of avoiding the sun despite some sunburns as a child.  My friends tell me the new-ish spots on my face are just age marks and I shouldn't worry, but of course since my arm melanoma last year, I am worried about every little change and new mark.  I'm tempted to go with my husband tomorrow (he's seeing the same surgeon who did my WLE and SNB last year) and show him my lip, but that would be so inappropriate.  The heck with hisleg--what about my lip?  Great spousal support, right?  This condition can sure make a girl crazy!

 

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Cindyco's picture
Replies 17
Last reply 8/9/2017 - 6:15pm

My mom starts her clinical trial today and receives her first infusion of IMCGP100!  She will be getting this weekly, with an additional dose of Durvalumab every 3 weeks.  

Praying that this will be a promising treatment for her without much toxicity!  We're not sure why, but her liver numbers have been elevated lately.  This worries us, because she's had to stop treatment before for hepatitis (both on ipi/nivo and pembro).  We've been careful and not taking any supplements or anything herbal, so we're not sure what the cause is.  Maybe a continuing flare or reaction to last week's liver biopsy?

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Anonymous's picture
Anonymous
Replies 1
Last reply 8/9/2017 - 12:19pm
Replies by: Hukill

In March of this year I was diagnosed with melanoma on the scalp. On May 5th I had the WLE and sentinel lode biopsy with scalp relocation(basically pulled my scalp as tight as it could possibly go to cover the incision rather than a skin graft) despite being a 3.56 breslow depth with ulceration I was very fortunate to have no cancer in the lymph nodes! It has been a long recovery and my oncologist and plastic surgeon tells me that the pain I am continuing to have on my head is completely normal and can last up to a year post surgery, I am wondering if anyone else has experienced this? At times it is very sharp. Despite opting for the scalp relocation to avoid having a bald spot, I have an area where the hair follicles didn't make it (which means bald spot anyways haha) and where the melanoma was is also sunken in a bit. My husband tells me that it has been since the surgery but I feel as it wasn't and is gradually sinking in more (it was on the very back part of my left crown) Not sure if I am making a mountain out of a molehill, while I am super blessed to have had such a great outcome I know I need to stay vigilant to catch any new things that pop up. Thanks in advance!

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Anonymous's picture
Anonymous
Replies 1
Last reply 8/9/2017 - 11:16am
Replies by: cancersnewnormal

Has anyone developed a sarcoma while in treatment with yervoy?

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45_dps's picture
Replies 4
Last reply 8/8/2017 - 11:58pm
Replies by: 45_dps, cancersnewnormal, Hukill, Anonymous

On January 17th I filed a disability claim with my employer (major health technology company) based on my diagnosis of stage 3b melanoma.

I wasn't planning to take disability until my surgery for lymph node removals in my neck (and surrounding tissue where positive-testing nodes were embedded).

I completed all the paperwork and my oncologist completed their portion of the paperwork. Then I asked what else needed to be done to get an approval. The insurance company said that no approvals are given in advance because schedules change (2nd opinions, surgery scheduled, etc). However they said that as soon as I was admitted to the hospital they would be approving my claim automatically.

On Feb 9th (Thursday) I had my surgery and was in the hospital til Feb 13th (I put in sick days for Feb 9th and 10th just to be safe). On Feb 13th I called the insurance company (they hadn't called or emailed me, and my work accounts still listed me as active rather than on leave). I was told that on Feb 10th they had called the hospital (it's a major health system in Southern California) and were disconnected while in the phone tree. No other actions had been taken on their part (they didn't call the hospital back and didn't pursue any other avenues for verification, and didn't contact me or my wife).

I'm furious and want to hire a lawyer just because I can't believe how little they have done in nearly a month! It seems like I have no recourse except to accept the very little they are doing to move this claim forward. As of yesterday I am absent without leave from my employer because I didn't put in for sick time, yet I am out of the office without an approved disability claim. My boss knows all about the situation and tells me not to worry about it, but I don't understand how they can accept such poor follow through from their disability insurance company.

i also opened a claim for social security disability yesterday because I just don't know what else to do.

-No progress on my employer's disability claim

-My employer's disability claim has been worded by them to be specific to the surgery and not to my diagnosis of Melanoma. (So I'm worried they are going to say I'm approved for only 2 weeks of leave to recover from surgery and no coverage for my subsequent physical therapy of shoulder and speech, and immune therapy).

-Social Security Disability has a compassionate allowance for metastatic melanoma, so hopefully it gets approved easily and I can feel comfortable that I am on some disability plan (even though it will pay less than 25% of my previous salary vs. the 55% which my employer's disability insurance policy would pay).

I'll just finish this note off by saying that I hope this is all in my head and that everyone working on my claim has the best intentions but just limited resources to move things forward.

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Anonymous's picture
Replies 1
Last reply 8/8/2017 - 9:35pm
Replies by: Janner

I've had more atypical moles removed than I can count. All mild and moderate. My doctor doesn't go back to remove all mildly atypical cells. Is this the norm? I'm so tired of hearing different things and reading different things and not knowing what to believe. Every mole I've had removed was changing. Why isn't it important to remove mildly atypical cells? Also, if these cells were to turn cancerous would I still be able to see it or would my scar cover it?  I honestly have no idea if I should be concerned about this or just let it go. I have a skin check in 10 days but I want advice from you guys before talking to my doc. I can spot the moles he's going to want to take off and he'll want to do a shave biopsy. Is this legit? I trust him but the interwebs contradict his theory on mild atypia (he doesn't think it's anything to worry about). Frankly, Dr. Google scares the living daylights out of me. If I'm over-reacting, don't hesitate to call me on it. Thanks, guys. I appreciate your time and knowledge.

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Hollybmeuc's picture
Replies 13
Last reply 8/8/2017 - 4:45pm

This site is amazing. I've learned so much here and I thank you very much. I have stage 3a melanoma and 3 days ago I just started yervoy treatment. 10 mlg every 3 weeks x4.   I'm wondering how others experiences were with side effects, who've had this treatment.       I'm only  itching really bad and get fatigued early in the day.  I feel pretty good so far.                                                            I'm hoping I can continue working okay. I'm also curious of if it's helped as well. Thanks,    Holly

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WithinMySkin's picture
Replies 21
Last reply 8/8/2017 - 4:32pm

Hello everyone!

There are a lot of new names and faces on this board since I was diagnosed in March of 2015 stage IIIB. Quick summary of my journey - I tried some serious lifestyle changes, but unfortunately progressed to Stage IIIC and had a CLND of my left groin in Dec. 2015 followed by Interferon. I continued to progress, and went on the Ipi/Nivo combo last spring (while leaving in one of the in-transits). My latests clear scan means that I'm one full year being NED - HOORAY!!! I can't believe its been a year!

I had lots of different side effects and I feel like I tried it all on this wild ride. It's a roller coaster for sure. Cancer is a curse, but at the same time, it's changed my life in so many ways that I wouldn't change my journey one bit. It truly made me realize that EVERY DAY is a blessing and I'm more grateful than ever.

To all those who are still fighting - keep up the good fight! Having melanoma tests your faith in everything - God, family, life, who you are, the whole shebang. Keep the faith. Keep fighting. Give it hell. And before you know it, YOU will be the one here writting about being one year NED! 

Wishing everyone here health and happiness!

Lauren

WithinMySkin

www.Withinmyskin.com

 

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J.bun's picture
Replies 8
Last reply 8/8/2017 - 6:22am

Made it home from my groin surgery on Friday. I was not so nervous about the surgery itself, but more apprehensive  about the recovery process & having a drain. So far it hasn't been as painful or debilitating as I thought it would be.  With that said - I know I am essentially resting for the next 2 weeks. 

Hopefully the healing process continues to go well. I see the surgeon on Thursday and then re-start Keytruda at the end of the month. 

One of the nice things about working for me has been a distraction from melanoma. But, since I am taking time off to recover I need your suggestions - how should I keep my mind occupied/stay busy?

- J.

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