MPIP: Melanoma Patients Information Page

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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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sing123's picture
Replies 4
Last reply 9/11/2019 - 9:42am

I apologize in advance and hope I am not hijacking this forum with a question about medicare for my future father in law. He has recently been diagnosed with Stage 3 + lung cancer. I doubt that he has any kind of supplemental prescription drug coverage. Have any of you solely used medicare as your health insurance for melanoma? Has it been pretty good in coverage? Surgery, radiation, immuno or other therapy?

Cindy

Diagnosed April 2018; Stage IIIc; 1 excision on head, started immuno (Opdivo) May 2018; new spots Oct. 2018; second surgery; continuing on Opdivo, finished Opdivo in March 2019

I'm Still Here!!!

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BillMFl's picture
Replies 3
Last reply 9/4/2019 - 10:26pm

Hi to any old timers in here. Two mm,s and dozens of basil and squamous over the years but recently turned 77. Whoopee! Only current issue is high risk but non obstructive coronary artery disease especially in the LAD. Been out of the loop here for a long time and not up to date on the latest treatments but sending out cheers to the warriers on here. Gave and received so much support on here in the past. My first mm was 18 years ago. Still healthy and very active! Walk 3 miles in an hour three times a week at our gym indoor track. Only the young joggers pass me. I was volunteer of the year at Moffit cancer center after my first WLE there. Stayed very active here for a long time but stepped aside to let the newbies have the stage. So be strong, be your own advocate, learn everything you can and never give up!!!


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Anonymous's picture
Anonymous
Replies 1
Last reply 9/4/2019 - 9:50pm
Replies by: MelanomaMike

Anyone know how Mat is doing? I was following his story and he hasn't posted in a while. Hope you're doing well.

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Suzana65's picture
Replies 2
Last reply 9/2/2019 - 5:30pm
Replies by: Suzana65, tedtell1

I’m here again mostly bc of my uncontrolled anxiety.
These are the findings of my ultrasound. I’m seeing my surgeon tomorrow. He’ll probably suggest biopsy. I was wondering if anyone had a similar US finding and what was the outcome. Thank you all .
FINDINGS:
Multiple small left axillary lymph nodes are identified the most prominent
measuring 0.8 x 0.5 x 0.8 cm, 1.3 x 0.3 x 1.4 cm, and 0.8 x 0.6 x 0.9 cm. A
0.8 x 0.6 x 0.7 cm left axillary lymph node demonstrates absence of a normal
fatty hilum and mildly ill-defined borders..

IMPRESSION:

Atypical appearance of a subcentimeter left axillary lymph node measuring up
to 8 mm in diameter. Further follow-up as clinically indicated.

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Carlsbad317's picture
Replies 2
Last reply 9/1/2019 - 10:16pm
Replies by: Carlsbad317, Bubbles

Researching these to therapies - are these ONLY an option if Braf positive?

Hanlon

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nasullivan's picture
Replies 2
Last reply 9/4/2019 - 4:25am
Replies by: MelMel, Johnjk04

My grandmother is 82 and just began her first treatment with ipi/nivo on Monday, the 26th. So far, no side effects other than some mild indigestion. She is tired - but she also has a tumor on her left adrenal. and it has been 4 weeks from intial MRI in brain to treatment. She has 8 mets in brain (mostly small), multiple in lung and one possible on the adreanal?

She is treating at Memorial Sloane with a Dr. Chapman. He works closely with Dr. Wolchuk - so I am trying to be hopeful.

I am looking for support and guidance. What has helped you all, through this process? I am juicing for her and trying to cook healthy options?

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I have been living with melanoma for 16 years. (Stage IIIb in 2003, Stage IV in 2010) I don't have to tell any of you what hell that has been, nor what an absolute miracle it is that I am able to write these lines today. I have paid much in pain, stress, treasure, time, and emotional injury to those I love. And, just when I thought I was close to being free - I am now 1 year from the diagnosis of adenocarcinoma ex-goblet cell of the appendix Stage II replete with extensive surgeries and residual damage. I am still in the soup and working through issues as I must.

I do not write this to have you feel sorry for me. I am far less injured, far less adversely affected than many on this forum. I am alive. I have an incredible support system in person and via most of you here. That said, I am tired. Tired of those who would support charlatans. Tired of trying to speak truth to power. Tired of being smacked around because I will not capitulate. Tired of being accused of being only "FOR MEDICINE" (The horror!!!) or being "AGAINST" anything vaguely "alternative"!!! I have eaten every vegetable daily!!! (Well...that's not true...though I ate many in childhood I absolutely refuse to eat a rutabaga currently!!!) I have exercised most days of my life. I still do both, despite the diagnoses I carry. I have advocated those things as well as "good live cultures" in your food, the possible benefits of curcumin, the need for vitamin D, the pros and cons of NSAID's - long before they were cool and all over the media. Just as importantly, if not more so - I have called doctors, pharma, institutions, lame research - your name it!!! - on the carpet whenever there has been a need.

Don't believe me? You might find a few of these entertaining:

Regarding an A$$ who happened to be a doctor: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2011/12/hands...

A QUACK masquerading as a doctor...getting her weirdos to hijack cancer blogs: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/06/quack...

On being a rattie: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2012/09/info-...

Just one example of calling out the FDA: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/09/seque...

The disparity in medical care given to the haves vs the have nots:
https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/09/cance...
https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/11/for-l...
https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/11/if-mo...

And don't even get me started about clinical trial design:
https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/03/shoul...
http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/04/clinic...
http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/12/patien...
http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/01/the-pr...
http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/01/the-tr...

America's strange health system: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/07/americ...

Calling out "irrelevant" data published as if it were news:
http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/07/brain-...
http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2018/08/resear...

Demanding and yelling (not that anyone is listening) about the need for action/research on issues that I feel will impact melanoma patients:

Latency in progression in some vs the incredible speed of progression in others: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/07/reason...

Radiation combined with immunotherapy (not that long ago this was considered "dangerous"): https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=radi...

Blood assays that can be diagnostic as well as provide important info about response or progression: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=bloo...

Adjuvant treatment: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=adju...

Demanding cessation of the use (read sale) of interferon for melanoma as adjuvant: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2019/06/ive-sa...

There's more, but - here's the latest - calling out Big Pharma - Nektar in paticular:
http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2019/09/nktr-2...

So yeah. I tell it like it is. From all sides of the aisle. As a trained medical professional and researcher. A patient in need of care. A thoughtful and discriminating consumer who doesn't fall for ANYTHING just cause you're selling it. One woman in a real big world filled with lots of hurt and suffering - some of which we can prevent and some beyond our ability to do so - willing to stand up for what is right, to fight for what all humans deserve, to call out charlatans - whether they work for the FDA, pharma, or on their own to scam unsuspecting, frightened and desperate peeps.

For what it's worth. Hug your dear ones. Make sure those you love know that you do. Life comes with no guarantees. Wishing you all a lovely day. - les

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rbrandt455's picture
Replies 4
Last reply 9/15/2019 - 12:48pm
Replies by: BethL, sks2019, mandyjill

I started to experience diarrhea 3 months after completing my 12 month cycle of opdivo (nivolumab) Treatment. Has anyone else had diarrhea following completion of treatment?

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MelanomaMike's picture
Replies 7
Last reply 9/3/2019 - 4:00pm

Hi yall, well, good morning to those in America on the West Coast, (and to all regardless!) a lot of you are from other countries so, you may be eating dinner as you read this Hahaha....
Im feeling REALLY good guys, Dr. Hamid is in my near future and im so at ease, not stressed and worried like before with dr. Jangs ideas, whatever Dr. Hamid recommends im gunna do it! Ill either get my insurance turned around for his criteria ( if time is on my side!) or just bring back his Plans of Action to Kaiser, which ever...And all this is made possible by YOU all! And a few Non Melanoma friends & blood family!! Love You Guys! Have a good weekend!! Ill be browsing here at MRF, love the new format with "Log Out" button now up above!, not that i need it! Im Staying Logged In! Haha....

Melanoma Will Not Beat Me or my MRF Family! www.wespark.org www.covvha.net

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sks2019's picture
Replies 8
Last reply 9/4/2019 - 9:22pm

After starting opdivo in Feb 2019, all the scans have been improving, except the one in Aug which showed two more spots in liver, got a biopsy done and just got a call from doc office , It is indeed melanoma. No pain no symptoms, I dont even believe i have melanoma. But got to beleive what we see on the PET's and biopsy results.

What are my options now. May be a heart attack is better to finish it in one go ......Crying .................

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isabel9's picture
Replies 6
Last reply 9/5/2019 - 9:29pm

I have an appointment on Tuesday, my mole looks totally benign (I think) it's small, about half the size of a pencil eraser, totally flat and uniform - but it's gone from light brown to dark brown and it's slightly bigger than it was before. It's on the bottom of my foot so I never look at it, I was shocked to see how dark it's become when I finally noticed it.

Do you think a doctor would want to biopsy something like that?

I hope they do because I don't want to wait and worry...

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Christiane29's picture
Replies 3
Last reply 8/31/2019 - 9:50am

Hello you all,

I hope you will understand my bad English. in march this year I was diagnosed stage IV with solitary lung met. This was removed but unfortunately not completely as the later lab diagnostic showed. I'm on Taf/Mek combo since April. Pet Scan in July showed a 1,5cm spot lightening. The radiologist thinks that it's residual tumor but it also could be scar tissue from the lung surgery. I went for a second opinion today and the thoracic surgeon also was not sure but he wants to do a second surgery to remove the supposed residual. My dermatologist wants to watch and wait.

What do you think. What should I do now?

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Raco's picture
Replies 4
Last reply 9/14/2019 - 11:38am

Hello Melanoma Family:
I’ am Back, Not because of any bad news but to check out all the post and to share my experience with the after effects of OpDivo.
I finished my treatments March 21st 2019. After a year of treatments. At the end, I was in a lot of muscle/joint pain. Mostly in the elbows, lower back and into my legs. I was on prednisone which make me feel like a new person however, my Dr. said we needed to come off of it. So we did. By the end of April, the pain started to return. Since that time, I have had 3 Dr. follow-up and 1 pet scan just done first of Aug. and the pain is still here. Cannot find any relief. Motrin, Advil, alieve. I refuse to take any Pain pills, (do not want to go down that path.) So I started to see a chiropractic who has been helping me with stretching exercises. No Back Cracking.
I have had some relief but I am still Hurting ( uggg ) when I was, my back throbs and my upper legs feel weak. I ‘am kind of at a loss of where to go from here. I cringe at the thought of any type of surgery.
Does anyone have any suggestions? Do other people who took OpDivo experiencing this stuff.
I am SO TIRED of HURTING :(

And My last blood test on the 19, it came back that my ACTH was off. 3.3 and the normal range is 7.2 – 63.3 so I just had it Re-drawn today and they included a Cortisol level also.
Not sure what this means either but you can best believe that all of this wares on your nerves just wondering if the Mountain Lion is hiding around the corner.
Sorry for rambling on but I needed to vent and needed advise.
Thanks to all and I wish you all good health.
Robbie Borum
RACO

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Suzana65's picture
Replies 10
Last reply 9/4/2019 - 11:19am
Replies by: Anonymous, Suzana65, Linny, Cindy Lou, tedtell1

Need help form you my kind friends. I was recently diagnosed with IIIa . There was a small 0,3mm burden found on one of my sentinel lymph node. Had a PET scan late July which was clear. Recommended wait and watch . Had my regular mammograms scheduled for 8/28. My oncologist order an US of the left axial SLN site as long as I was at the facility already. Today the PA of my oncologist called me. One suspicious lymph node. I’m soooo anxious . How is that possible ? It has not been even a month from my PET scan. What is next? Any advise?

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