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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Hikeratheart's picture
Replies 7
Last reply 3/16/2016 - 8:53pm
Replies by: Anonymous, Hikeratheart, Janner

Hi All,

I want you to know how important this forum is to me since I was diagnosed July 1, 2015, stage 2b. I did the happy dance when after a SNB they found no lymph involvement. My left arm had a breslows 4.5 tumor which was surgically removed. I know this is concerning. I have had numerous excisions(benign) on my legs, and moes surgery on my face in about 4 spots. 

My derma is diligent, and I am also continually self checking.

About 5 weeks ago, I noticed a thick "blister" on my left foot, top of my second to the last toe. It presented like a wart, and so thats how I treated it.  Soaking it and applying compound W.    No amount of compound W, and those wart band aids effected it. It is hard, and pink to clear color, about the size of a dime.  I also have one my right foot, between my toes, a small clear bubble with a dark irregular dark spot next to it.  This to me is worrisome. Neither spot bleeds nor itches.

I see my derma about the following on  Monday, 3/28. 

Please share any thoughts as I move forward, thank you so much!

And a special thank you to all the care, knowledge, information and hope that you all give through this board.

 

Kathy McC

hikeratheart

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WithinMySkin's picture
Replies 10
Last reply 3/16/2016 - 2:09pm
Replies by: Lil0909, WithinMySkin, Anonymous, BrianP, JuTMSY4, melj

Hello fellow melanoma warriors!! 

I had a CLND of my left groin in December of last year. I didn't have many problems post surgery until just recently. I've been getting IV hydration therapy to help with the side effects of Sylatron, and while it's helping with my dehydration, lots of fluid is hanging out in my leg now. It's mostly "beginning changes" in my thigh (thickening of skin, swelling, heaviness). I'd like to keep it at bay and prevent it from furthering down my leg. I'm signed up for massage in a couple weeks to help with drainage, and I wear my compression stocking religiously, but is there anything else I can do in the meantime? For those with lymphedema, what helps (and what hurts)? 

PS - just had scans come back mostly clear, minus a possible in-transit we are watching. Nothing systemic, so I'll take it! Woohoo! 

Wishing everyone all the best. Lauren 

WithinMySkin

www.Withinmyskin.com

 

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Lyric17's picture
Replies 33
Last reply 3/16/2016 - 9:57am

Hi everyone,  my name is Lyric and yes that is my real first name. I am 30 years old and I seem pretty healthy except for an issue I have going on with my index finger nail.

 

About a year ago I noticed a small skinny pale light brown streak on my nail. The line is near the side of the nail and not the middle of my name. It runs from the cuticle to the end of the nail. And to be honest I use to smoke and had quit about a month before I noticed this discoloration of a line on my nail. So when I spotted this I thought it was nothing more than cigarette tar stain to my nail and it would slowly go away since I was smoke free.

 

Six months went by and nothing changed. The small skinny light pale brown streak was in the same spot with no changes. My fiance kept telling me I was worrying over nothing and just to forget it and as you age your body changes. At the moment I went along with what she said but at times in the back of my head I didn't feel right about ignoring it. Kind of like it was my body telling me something or a possible warning. 

 

Finally at about a year I got tired of looking at it and after several hours of non stop looking online the only thing I seen remotely was something called Subungual Melanoma. My fiance did her own research and it's all she could come up with as well. She grew a little worried by now and so did I.

 

Next day I called my local clinic and doctor to get an appointment. I was able to see the doctor about an hour later. So the doctor looked at my index finger nail and was speechless. She said she had no idea in all her years of practice had she seen something like this. I mentioned to her what I found online and she left the room to do some searching. She came back and stated she had no idea and she called making a referral and appointment with a Dermatologist Clinic and Cancer Specialist next town over.

 

I had to wait about a month before I went to see the dermatologist. Once the dermatologist looked at my fingernail she asked if I'd like to have a biopsy done that day or later and of course I chose now. So the dermotologist comes back and ssys she is doing a punch biopsy of my nail and the skin area below the nail which is where melanoma/whatever it is is. She does the punch biopsy and not to much discomfort. 

 

Now I had to wait a couple weeks for the results of my biopsy. If I got a letter in the mail it was benign and if the called me it's malignant. Well today my results came by a phone call. But the RN says the results showed nothing but something is there and we need to figure out the cause of it. She said that this time I will be seeing the head main dermatologist next visit who will performing a deeper biopsy sample of the area. The RN stated they knew it was some type of melanonychia but don't know exactly why or what. So they don't know if it's benign or malignant or nothing. So now I have to do a second biopsy of the same spot and a little deeper. And now i gotta wait another month till my next biopsy. This concerns me a lot and has me extremely worried. My fiance keeps saying things will be alright but that people die young everyday - which this is not very helpful.

 

Can anyone give their thoughts and opinions here? I'd really appreciate it a lot. If you know anything about, anyone who has been through or if you have been through this please let me know more information. I feel lost and kind of like it's a type of cancer that many doctors don't know about. Help please!!!

 

BTW I have recently became a member also of Cancer Compass asking for help and thoughts. The people there have been really nice and I have had a couple replies but I would like to see thoughts and help also from those from melanoma.org site here. Please if you've have had experience, know someone who has or any information please let me know. I have included a couple pics as well of my index finger with the supposed issue. In the photo you will see the light pale brown line near the edge of my nail and you will also see where a recent punch biopsy was performed. As stated above that biopsy came back inconclusive and I have to now go in for a second biopsy which will be deeper. 

I'm a 30 year old white male btw just to give a little idea of my age and race.

I'm very terrified and scared. I have cried almost every day over  and can't imagine dying and leaving my two dogs and two cats. I can't imagine leaving my fiance as well who will not discuss or talk about it all. I have no family to talk to as I was adopted and have not talked with my adopted parents in over 10 years. I don't know my real parents and family so medical history and support is not there. I have no one to really turn to and I'm sorry for asking for help and support. But then again this could all come back benign but from what I've read one benign cases are more common in african american but with caucasian it's very rare and more possibly malignant. Plus the life expectancy is horrible. Help me with information or anything if you can.

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Mforest's picture
Replies 3
Last reply 3/15/2016 - 6:18pm
Replies by: Janner, Mforest

My ten year old daughter had this mole on her upper back since she was very young but over the past couple of years it had been scraped by her brushing her hair and she also picked at it when she was younger so it changed shape a bit.  Had it checked by one dermatologist years ago who said its nothing... Recently had another dermatologist check the mole and we decided to go ahead with a shave biopsy.  The pathology results: compound nevus with minimally to focally moderate atypica. Complete excision recommended.  

Our dermatologist basically said no big deal lets just make sure we get all clear margins with minimal scaring and since she doesn't do stitches referred us out to a plastic surgeon.  So we waited 2 months for an available appointment.  We went to the plastic surgeon yesterday who excised the mole and stated the mole was deep and he was making sure to get enough in case melanoma was present.  I was a bit taken back and respectfully questioned why he thought  melanoma was present when the biopsy pathology never mentioned it.  He said it can happen especially when the pathologist gets the larger sample rather than the shave.  Ok... now I'm nervous!!!!

Should I expect such a drastic change in pathology results from the excision to upstage from mild to moderate atypical to melanoma?  I am assuming the pathologist who read the shave biopsy would have mentioned melanoma concerns or maybe the shave biopsy didn't give him enough to make a concrete finding of melanoma?  i was told the same dermatopathologist who read the shave biopsy will also read the excision.  Plus in the shave biopsy pathology report there is a mention of a stromal inflammation response...not quite sure what that means.  Thanks 

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mrs_grover's picture
Replies 4
Last reply 3/15/2016 - 12:15am

My husband recently passed away from Melanoma.  Although the Zelboraf did not work for him, he wanted to make sure the remainder of his prescription would go to good use, especially given the cost.  Does anyone know of an organization that would accept the donation, and not resell it or charge someone for it?  Thank you.

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jodaro's picture
Replies 2
Last reply 3/14/2016 - 9:09pm
Replies by: Anonymous, Bubbles

Read this yesterday and thought it might be interesting to this forum.

http://www.nytimes.com/2016/03/13/opinion/sunday/the-neuroscientist-who-...

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Kare83's picture
Replies 3
Last reply 3/14/2016 - 12:06pm
Replies by: liberty04281, Janner, CHD

Just a query.. When reading some patients stories, it says Stage at Diagnosis and then Current Stage.

Some patients put Stage 0 or 1 at diagnosis though their current stage might be higher.. Does this mean they originally had a Stage 1 and then the melanoma came back later, at a further stage? 

And first diagnosed date is from their very first Melanoma?

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Bubbles's picture
Replies 9
Last reply 3/14/2016 - 11:06am

I thought this was a wonderful webinar that Weber presented covering data from recent trials with a view to what we can anticpate to improve melanoma treatment in the relatively near future.  I have written a synopsis on my blog with a link to the webinar itself.

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/03/immunology-updatewebinar-for-melanoma.html

While the webinar addresses both targeted and immunotherapy, as well as anticipated combo's....Weber's final remarks include:  "I think we...all agree that it is a very bright era for immunotherapy in melanoma...and for cancer in general."

Thanks to all the ratties who have made it so.  Yours, celeste

 

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Smilgon's picture
Replies 5
Last reply 3/14/2016 - 10:28am

Hello everyone,

i just wanted to say hi to all.  I was diagnosed as stage 3B in 2014 and was progression free until last month. A PET scan showed 4 lesions, one in each of my lungs. Insurance here in Switzerland will only allow Ipi monotherapy and, if I don't respond, then I would go on Keytruda.  My question is, are there any trials currently ongoing within Europe on the combination?   From what I have seen and based on recommendations from the US, I should fight for the combo, but don't want to wait too much longer to start a treatment.  Does anyone have any thoughts?

 

Sincerely,

Mike Baker

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dfeng's picture
Replies 21
Last reply 3/13/2016 - 8:43pm

Well, bad news. It grows over the limit that we set.

Do not have many options left and, really do not want to disencourage all friends.

But the reality is the reality I have to face. Let's see how far I can push.

Best wishes,

D. Feng

 

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Hello all,

I'm scheduled for lower left leg wide exsicion (+skin graft) and SLNB on 8/11.  I'm equally as scared of surgery/recovery as I am of outcome...has anyone had this?  FYI, I plan to have drainage tube for SLNB.  

If so, can you share your recovery/experience with me?  I'm the mom a busy 5 year old starting kindergarten, I have a f/t job and a husband that travels...not a good combo for bed rest.  

Also, do you think I'm at risk for lymphedema?  Other than this I am healthy and in shape..should that be an asset in recovery?

I am grateful for any feedback; many thanks!

 

Nicole

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DZnDef's picture
Replies 3
Last reply 3/12/2016 - 3:18pm
Replies by: Mat, DZnDef, Polymath

Hello all you wonderful people!

My brother has just today started Zelboraf.  Could any of you that have been on this drug share your experiences?  It will help us to know what to expect.

For those of you that have followed my brother's story, he was supposed to start Nivo this week.  But unfortunately, he had swelling in his brain due to reducing the Doxymethasone too quickly over this past weekend.  He has been hospitalized ever since.  They've reduced the swelling via IV steroids so he no longer speaks as though he is on an acid trip.  But his doctor determined he is too weak and his tumor burden too high to start with Nivo so he is starting with Zelboraf.

As a side bonus, I took him with me to visit my own oncologist, Dr. Steven O'Day, two weeks ago and Dr. O'Day offered to consult with my brother's Doctor on his treatment.  I thought that was awfully kind of him.  So my brother's Kaiser doctor has been speaking with Dr. O'Day.

Looking forward to any Zelboraf (Vemufranib (sp?)) stories you all can share.

Cheers!

Maggie

Maggie - Stage IV (lung mets unknown primary) since July 2012

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Anonymous's picture
Anonymous
Replies 5
Last reply 3/12/2016 - 2:35pm

Why do you suggest going to a specialist for melanoma? Do you typically just have that specialist do the surgery and give you a plan and never go back? Or do you follow through with that specialist to the end? Are there any of you who do a combination of home town and specialists?

Rebekah

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Spinbeast55's picture
Replies 12
Last reply 3/12/2016 - 1:38pm

Hello, 

I'm brand new to this but thankful to be able to reach out for advise. I was diagnosed with 2B Melanoma on my upper lip in Sept 2015. I had the tumor removed & the Sentinel Lymph Node biopsy came back negative. I had plastic surgery to remove a microscopic cell or two near the nerve lining and reconstruct the upper lip. Everything went well and my lip is beautiful - you wouldn't know it even happened. I followed up with 5 weeks of daily radiation targeted to the upper lip area, to prevent any reoccurrence. I recently saw my surgical oncologist for a follow-up, which included a CT scan which came back negative. He floated the idea of Interferon as an additional, elective, preventative measure & set me up with a consultation with a hematologist oncologist. During the consultation I asked if I didn't pursue Interferon what the chances were of NOT having a reoccurrence and he said 80-85%. The Interferon increases those percentages by 10%. I'm seeking a second opinion because I'm scared of the effects during and after the treatment. I am a very active 55 year old woman, currently melanoma free and healthy. I am a Christian and have deep faith in God and am blessed with a wonderful husband and beautiful family. I am a career professional in the financial industry and work for a major brokerage firm (high stress job). I work out weekly with Spin/TRX classes and try to maintain a healthy life-work balance. I'm really on the fence about starting the Interferon treatments for a year and the side effects during and after. I would appreciate any insight you offer. God bless!

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msitz's picture
Replies 3
Last reply 3/12/2016 - 4:43am
Replies by: EdwardKatz, Patina, Polymath

Part 1 of the story is here:

http://www.melanoma.org/find-support/patient-community/mpip-melanoma-pat...

We just got some very exciting scan results back. In brief, my dad was diagnosed with Stage 4 Melanoma in March of 2015 and had several near fatal complications before he started responding to Keytruda. He has tumours in his abdomen, lungs, lymph nodes and brain.

This is the result of his most recent CT abdomen/pelvis:

"There has been interval significant disease improvement. Example - The largest left flank small bowel mass which previously measured 6.4x7.6cm now measure 3x4cm and a right lower quadrant and another small bowel mass which previously measured 3.7x4cm is now not definitely visualized. Left flank peritoneal nodule which previously measured 4.2x4.4cm is not definitely visualized."

That means that his biggest tumour is about half of what it was and the 2nd and 3rd largest tumours are gone! There were several other small tumours that have all significantly shrunk too. In March my father was given 2 months to live and now his tumours are 70% gone. His quality of life is excellent and he is planning a trip to South America for next year.

We could not be more thankful. There is hope to those of you with a stage 4 diagnosis with a very high tumour burden. His lung tumours are also responding very well, as is his brain tumour. Since starting Keytruda 7 months ago there have been no new tumours and everything has shrunk.

- msitz

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