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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Hopeful105's picture
Replies 6
Last reply 1/14/2019 - 6:11am

My husband is 60 years old and was diagnosed with Stage 4 melanoma in his small intestine and lung.   They removed the tumor in the small intestine.  He is starting immunotherapy (nivolumab) treatments Monday.  I was just wondering what to expect.  I know everyone's reaction is different.  Does everyone get some kind of side effects or have any of you been fortunate enough to tolerate it ok?  How quickly do the side effects kick in?    I know it will be a couple of months before we know if his cancer is reacting from the treatments.   I am just wondering what it will be like between now and then.

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Anonymous's picture
Replies 4
Last reply 1/13/2019 - 12:11pm
Replies by: Anonymous, sing123

Hi all! About 6 months in of monthly Opdivo treatments, my dermatologist found a few new spots of melanoma along the scar line of the original occurence/surgery. 

One of the docs on my team said that this doesn’t mean that it is an Opdivo fail (based on that the local recurrence could have been residual cells too small to detect previously and that the Opdivo may not have been able to eradicate them), while another says that it does indicate that the Opdivo isn’t working. 

Any thoughts on this? I’m definitely continuing the treatments until I reach 13, but the difference in opinion puzzles me.

Cindy

Diagnosed April 2018; Stage IIIb; 1 excision on head, started immuno (Opdivo) May 2018; new spots Oct. 2018; second surgery; about to start radiation 

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TexMelanomex's picture
Replies 9
Last reply 1/11/2019 - 11:55am

Hi Warriors,

Just a quick follow up. Round 22 of Pembro complete and latest scans reveal that at 9 months I'm still NED! My medical oncologist even offered to let me consider if I want to stop the Pembro at this point citing a lack of data on efficacy between 1 year and 2 years of Pembro. She offered this because of the continuing joint pain that has finally caught up with me...at least for now, I said we will Warrior On!

Bubbles and Ed, I know you have weighed on this before but I could use your opinion on this. I am still tolerating the Pembro without any deviation in labs (all remarkably still in the normal range). It is kicking my rear a little in terms of joint pain and mobility (but it doesn't keep me from doing what I need to do like work, get things done around the house, etc). My thoughts are that as long as I can tolerate it Im going to keep going and see if I can hit the full 2 years of treatment unless there is reason not to. I can deal with the aches and pains, my bigger concern is that at some point it starts to do organ damage or some other issue is caused by the Pembro. Hopefully the labs will give me some advance warning of potential problems if they arise?

I completely understand that this is a high quality problem given my current NED status, and I very much want to keep that status; hence the reluctance to terminate Pembro early. I still think PV-10 did all of the heavy lifting but if I have Mel cells floating around and the Pembro is keeping them in check, I better keep on keeping on!

Thoughts?

Tex

 

 

Tex

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cruassan's picture
Replies 8
Last reply 1/10/2019 - 6:32am
Replies by: cruassan, Bubbles, ed williams, Anonymous, AMcReader

Hello all, is there anyone who has increase in eosinophils upon therapy with Nivo or Pembro?  I' ve got 14 dose of Nivo and now my eosinophils are 40% ( normal 0-5%)The growth began after the first dose of Nivolumab. And then they grew and grew. Absolute eosinophil count is very high too- 4000. Doctors never faced it. Despite it we continue treatment. Who heared anything about hypereosinophilia with immunotherapy? But  situation is not about increase 10-20%, but 40% It's too much((

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Babyjayne_85's picture
Replies 1
Last reply 1/8/2019 - 9:59pm
Replies by: Bubbles

Hello I am 33 years old and was diagnosed with melanoma. I had a removal of the melanoma and 7 lymph nodes removed for biopsy. One lymph node came back positive for cancer. I recently had a petscan and a spot showed up under the melanoma removal site deep in the muscle in my leg. I am supposed to start my treatments for the melanoma because I am BRAF positive before February but they won’t do anything until they figure out my leg. Looking for advise or things that may help.  

 

Thank you 

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NEDnotDead's picture
Replies 15
Last reply 1/15/2019 - 11:35am

My Oncologist just called me to share this amazing news! After the 4 combos of Ipi/Nivo and 8 months of  Nivo maintenance, my stubborn liver and large adrenal mets are finally shrinking. I had an extremely heavy burden of organ and bone mets when diagnosed 1 year ago this month. I had no clue anything was wrong until the mets on my hips pinched nerves and caused partial paralysis from the waist down.  I walked into the ER on January 20th 2018 in extreme pain and collapsed before I made it through Triage. Had 5 rounds of radiation to my hips and pelvis and stared the combo within a month from diagnosis. Bone mets and smaller organ mets responded quickly to treatment, but large liver tumor and adrenal tumors seem to be more stubborn.

Happy to be making this post after such a challenging year. Wishing you all similar successes in 2019!

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oocn's picture
Replies 5
Last reply 1/10/2019 - 2:47pm
Replies by: Anonymous, MichelleRHG, WithinMySkin, casagrayson

Hey Warriors, it has been a little while since I've posted here. I think at this point almost a year, but I figured this might be one of the last/best places to get some support and even a reality check. 

My background is that I am currently 2 years out of a stage IIIB diagnoses, did a 1 year trial of adjuvant pembro every three weeks. NED, next scans are at the end of this month. 

I'm 27 years old and have had the same job for the past 4 years. Like anything else, sometimes its great, sometimes it is not. I've been promoted in the last year, so higher responsibility and pay and I really like the people. Is it where I see myself in 5 years? Not exactly, but I think I'm gaining valuable experience. 

The best part of it: the healthcare. We have one of those old employer plans thats basically a hold over from the old days where premiums are super low and the coverage is outstanding. It has covered everything over the past 3 years of my diagnoses (scans/MRI/appointments/surgery..you get it). 

Now I'm a fairly young guy, and I've been recruited pretty heavily by a local team in a different industry to become what is essentially an apprentice. This means that if I left my current job I'd lose insurance (or switch to COBRA, which would be $800/month out of pocket) and then have my salary reduced by about $40k. This is all in the hopes that in a few years I'll be out of the apprentice role making more moeny(ideally, maybe not). 

So I'm reaching out to you, the MRF warriors. People who have fought and are in the fight. I can be humble here and recognize that I'm lucky. I have my current health and this opportunity before me. I'm beyond grateful for that. Has anyone else been through this? Is this just a gamble I'll have to make in life? Is being conservative about my job and health care security intelligent?

But is the wise choice to stick with my insurance and current level of stability now and get a few more years out before I start looking at big career direction shifts?What would you do?

Apologies if this is totally off base from normal questions on here, it is moreso one on health care decision making..

--A very conflicted warrior

 

 

 

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Jenine's picture
Replies 1
Last reply 1/10/2019 - 12:12pm
Replies by: sister of patient

 Hello all,

Just wanted to take this opportunity to reach out and say hello and hope everybody has a well 2019!   Also, I am attaching a song that I think everyone can relate;-)

https://m.youtube.com/watch?v=sTJ7AzBIJoI

Peace, love and good health to all! 

Jenine

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jja82's picture
Replies 2
Last reply 1/12/2019 - 10:45pm

Hi, I am being seen for Melanoma Stage IIA since Jan 2017 - wide excision, margins negative, SLNB/nodes negative, thickness 1.4MM, ulcerated, pt2b, arm area..  Also just had a second melanoma insitu excised negative margins (collar bone area) in 11/2018.

I am being seen every 3 months for checkups with dermagraphy review, and was hoping to understand what treatment, and testing options (scans, etc), and the frequency are being done for similar patients that have Stage IIA at your facility.

Thank you.

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canadagirl's picture
Replies 2
Last reply 1/10/2019 - 1:39pm
Replies by: canadagirl, Janner

Hi everyone,

I had a punch biopsy done on [part of my mole] on my face. The mole itself is about the size of a pencil eraser.  The punch biopsy  was 0.3 cmx0.3 cmx0.3 cm, which took out all of the "dark" part of the mole. It's the healthy [looking] part of the mole that remains. I'm not understanding all of the scientific description below.  I understand in situ to be a low risk lesion  to likely not spread- is that correct?  How often does in situ's ...upstage after my wide local re-excision?  Anyone know how big the scar is going to be?

 

Diagnosis: Punch Biopsy: Melanoma in Situ (face, cheek).

Recommendation: Wide local re-excision (5mm margin) scheduled next week.

- punch biopsy shows presence of an atypical junctional melanocytic lesion characterized by occasional nests of atypical melanocytes along the base of the epidermis with the long axis parallel to hte epidermal surface as well as single melanocytes with atypical cytological features extending into the upper portions of the epidermis as well as focally showing a confluent growth patter along the basal layer.
There is involvement of follicular epithelium. There are melanophages in the superficial dermis as well as mild perivascular chronic inflammation. There is absence of an intradermal melanocytic omponent in the punch biopsy. There is minimal dermal solar elastosis. The lesion extends to and is present in the peripheral borders of the punch biopsy. The specimen is 0.3cm x 0.3 cmx 0.3 cm in depth.

canadagirl

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smiller's picture
Replies 7
Last reply 1/10/2019 - 12:29am

  My husband  started this journey Feb. 2017.  After being diagnosed stage four and making it through three rounds of Opdivo/Yervoy, he had to stop treatment because of the side effects.  Doctor took a "wait and watch" approach.  Honestly the way my husband felt, looked and acted we didn't know if he would make it until Christmas 2017.  He continued with scans every three months and all showed gradually shrinking tumors.  Not only did he see Christmas 2017, he also saw the birth of our grandson in Jan. 2018. Latest scan last Friday (01/104/19) shows No Evidence of Disease.  We know this is still a battle (another scan planned in three months) but to say the least--We are blessed beyond belief.

 I (once again) want to say thanks for all the encouragement I get from this board (Bubbles, Melanoma Mike, Ed and countless others--God Bless You All. 

 May 2019 show good news for everyone!

Jim's wife

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Anonymous's picture
Anonymous
Replies 10
Last reply 1/12/2019 - 9:47am

Hello everyone 

I just wanted to ask if there are many people who basically got an all clear after having skin/lymph  lesions removed only to find out they had internal organ lesions at a later date. If so what kind of follow up did u receive after skin lesion removed ( dermatology checks or scans?) and how did you get diagnosed with metastasis? 

Im interested because my husband is now stage IV melanoma with brain, liver and kidney Mets and I think that there could have been a more thorough follow up before we got to this point. Should this patient population have an annual CT ? Is this something we as a group could drive to accomplish?

thank you

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Mattnash91's picture
Replies 4
Last reply 1/9/2019 - 6:12pm

Hi guys I’m 23 and worried I’ve got melanoma. I noticed a mole on my head three years s ago and never really paid attention to it I just looked at it now and it’s scaring me. Do you guys know if it’s indicative of melanoma. I see there is hair growing from it which is a good sign, no?

Guys I have really bad health anxiety please give me some advice

 

 

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I am really bad with pain and somewhat whiny when it comes to pain. I have a dark stripe on my nail and a doctor said I should watch it for 3 months first. However, I’m wondering if a biopsy hurts in case I need it sooner or later. I just need to prepare weeks before the schedule. Thanks in advance!

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skfitz's picture
Replies 11
Last reply 1/10/2019 - 5:17am
Replies by: skfitz, MelMel, Hukill, Anonymous, ed williams, swalters1038

Hey all. My husband was diagnosed Stage IV in March 2018 and after failing immunotherapy and everything growing and spreading, was put on Dabrafenib/Trametinib in July. The pills worked great and started shrinking things immediately, but he still can't tolerate them with any consistency. They've reduced him from the 150mg Dab down to 75mg, all the while keeping the Tram at the steady 2mg. He'll do ok for a couple weeks but the minute he tries to taper the Prednisone, the bottom drops out. His fevers (and chills, nausea, joint pain...the works) are in the 104 range and are debilitating. They want to reduce him down to 50mg Dabrafenib but we're thinking maybe it's time to reduce the Trametinib instead. They want him to get down to 10mg on the steroids but that seems impossible right now. Anyone have any success combatting the fevers (or tapering the steroids)? We've tried the Tylenol/Motrin thing and it's been pretty useless. We're hoping to gain as much mileage as we can from these pills since immunotherapy didn't work, but we need to get him to tolerate them. Thanks for any suggestions or support you can provide. I appreciate this support group so very much.

-Shannon (and Jason)

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