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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nicolepfeil's picture
Replies 7
Last reply 3/14/2017 - 8:49am

My husband was diagnosed with Stage 3 Melanoma that was located on his arm and in Lympnodes under his arm pit, His option at this point was to start Interferon 5 days a week for 4 weeks, then radiation, then an additional 11 months of Interferon 3 days a week.

We were told how horrible this treatment would be but decided to try.  

After one week he was pulled off of the treatment because it was affecting his liver,  He will be starting again in 2 days and at this point we are wondering if it is worth it.  He is so sick, he cannot leave bed  and is wondering if the 5% chance is worth losing a year lying in bed,

I am wondering if there is anyone on here that has completed the year long treatment, or any opinions on this treatment in general?

I realize everyone is different but as newbies to this diagnosis I am hoping to get any advice that is out there, 

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Anonymous's picture
Anonymous
Replies 6
Last reply 3/13/2017 - 11:46pm
Replies by: Julie369, Racetraxx1, jennunicorn, Anonymous, youngann

I have two moles on my face that bother me. No derm has ever told me to get them off but everytime I look at them I get anxiety.  I play several outdoor sports and my face is always in the sun and sometimes im not wearing sunscreen so I'm always worried about these two moles going haywire?  I have never had melanoma but did have 1 atypical mole removed years ago and it was the Lowest level.  The one mole is on my temple and I have always had it. It is about 4mm. The other appeared on the bridge of my nose after a golf trip in 2011.  It is dark, tiny,maybe 2mm but shaped like a lightining bolt which I thought was odd but several derms viewed it over the years and said nothinh.   My question is do you think it's prudent to remove these moles and if so what's the best way to minimize scaring ? 

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jjd583's picture
Replies 11
Last reply 3/13/2017 - 11:28pm

Hi,

 

I have just been told by my GP I have a 4.3mm thickness on the Breslow and 4-5 on the Clark scale , melanoma on my scalp

I am 31 years old and relatively fit.

I'm seeing a specialist this week to have a wider excision done. There are no signs of spread in my biopsy , 

I guess I'm just wondering what to expect and of there is no real answer at this stage until the excision is done.

Any advice or info as to what I'm in for would be great

 

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Charles died at home on February 1st, If I hadn't wanted to give him more time to snooze before readying for his last, one of 10, full brain radiation treatments. The next day was to be advancement to Keytruda, or even perhaps a new clinical drug.  In lucid moments, I am sure he understood that discussions of health aide workers and in home hospice was fast approaching the horizong..............I believe he reached through a window and climbed away, to be at peace, pain free - never to have his worst nightmare of dying in a hospital reallized.  It's been 38 days, and it's still so hard to breathe..................I will work to fight against this disease, but with a heart so bruised and hurting, making my way through a world that is empty for now, filled with lonliness and yearnings for one last hug.............

Please all fight on, kick butt, or at the end cling with love.............for those left behind now suffer in a different way,

I will still visit the site, this forum helped me so much, it sustained me and educated me.  For all those that went before him, hold each other tighht and shine down on us to let us know your spirit still surrounds us.

Please all take care, I love you all like family.

Rita

Rita

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NSNewf's picture
Replies 8
Last reply 3/13/2017 - 1:59pm
Replies by: NSNewf, Delores T., Mark_DC, debwray, Anonymous

As an update I am awaiting path for neck dissection (possibly 4 weeks). I met with oncologist prior to surgery and my options  are limited to HDI. 

Other than through a trial have other Stage 3 Canadians been offered other treatments?

 

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Anonymous's picture
Replies 6
Last reply 3/13/2017 - 1:46pm

All of my lymph nodes which tested positive are in the same "field / mat" under my arm (primary was on my chest).

Does the term metastatic come from the fact I may have micro-metastize particles which can travel throughout my blood and lymph system?

I'm having a hard time distinguishing between stage 3 and 4, but it seems like the difference is in where the melanoma is found and not necessarily a difference in prognosis.

I can see the difference between stage 2 and 3 being prognostically significant because at stage 2 the melanoma has only been "found" in the skin. However, just because it hasn't been found in other places doesn't mean the micro particles haven't started spreading to anywhere else.

ok, I started out with a question and ended up scaring myself.

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BrianP's picture
Replies 11
Last reply 3/13/2017 - 12:57pm

Just got my 12 week scan results for my Cellular Adoptive Immunotherapy + Ipi trial..  Good news is the lesions in my abdomen continue to remain stable and marginally shrink.  I'll take that result any day.  Bad news is there is a 5x7mm lesion on the brain.  My Doctor seems to think it's the real deal and needs to be dealt with.  Over 5 years in the game and this is my first foray into the Brain Met Club.  I'm at MDA now and they are scheduling me consults for Gamma Knife..  They scheduled me for a consult with Dr. Caroline Chung (radiologist) today and tomorrow with Dr. Sherise Ferguson (neurosurgeon).  Curious if anyone has had any dealings with these two? This is moving fast and it sounds like I'll be back down here the week after next to get zapped.  Normally like to have more time to research and get 2nd opinions but I think this is the right move to get things taken care of quickly.  Curious what others think about finding the "best" Gamma knife guy or gal.  Seems unlike surgery where there is definitely an artistry to it the gamma knife is mostly computer controlled based on "carefully" inputted parameters.  Feel like anyone at MDA and the equipment is probably topnotch.

Will spend the next couple weeks looking at post gamma knife options.  Leaning toward going back to nivo as soon as possible to maybe capitalize on some abscopal effect.

Brianj

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mom3girlsFL's picture
Replies 2
Last reply 3/13/2017 - 9:22am
Replies by: marta010, UBContributor

Hi Friends!

Longtime member, frequent lurker...sadly, not much of a poster.

 

I have been on this forum since (roughly) 2003. There have been many people here who I've been blessed to journey with and many more who I've been able to learn from. There have been times when I've  "stepped away", sometimes because it can be so overwhelming, and sometimes because of battles being lost by the most courageous warriors. I am so grateful to you all who continue to regularly post and update and share information.

With so many current stories of people battling-people who you cant help but love,  I thought maybe my past year (year and a half) could offer optimism and hope.

2003 stage 1.  2010 groin dissection, start interferon...later 2010 fail interferon, inguinal node surgery. Clear scans, watch and wait. 2015 stage 4 lung, retroperinoteal lymph nodes, para-aortic lymph nodes.

Started Taf/Mek combo-cant remember if we were into 2016 by this time.  Immediate responder! It hasn't  been easy, have changed dosing, switched to zelboraf/cotellic (was bad!), took only taf for a while, have had a couple med "vacations"...currently full dose.

So far 3 scans (last one December) have shown no recurrence. I continue to try and stay cautiously optimistic about the future knowing, statisically, things can change.

Dont know if anyone else here has been on T/M this long as well?

Anyway, much love to all!

Laurie

 

Do not fear tomorrow, God is already there.

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Renee87's picture
Replies 6
Last reply 3/13/2017 - 9:01am
Replies by: BillMFl, Renee87, Anonymous, kimmyl

Hi, I hope there is someone out there with similar experience to me as so far only a hand full of cases have been recorded so I am feeling a little isolated in finding information particularly to me case. My pure coincidence for another surgery during key hole my surgeon found an internal melanoma within my belly button. At first he thought it was a little bit of dirt and scrubbed it until he popped my belly button inside out to find the growth. Thankfully it's stage 1. I have surgery next week to remove belly button and area surrounding. Has anyone had experience with an internal melanoma? 

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Anonymous's picture
Anonymous
Replies 2
Last reply 3/13/2017 - 8:45am
Replies by: BillMFl, Anonymous

Can melanoma be misdiagnosed as completely benign nevus or its unlikely?
I mean is it difficult to distinguish between benign and malignant cells?
Thanks!

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jenny22's picture
Replies 16
Last reply 3/12/2017 - 10:54pm

I signed on to post yesterday and read the news about Paul and then couldnt...

Woke up today feeling like I wanted to share some good news, but i do so somewhat hesitantly in light of yesterdays tragic news.

As a quick history.....diagnosed 1B sept. 2013, First recurrence in Nov of 2014, in same spot as primary, considered "instransit", restaged to  3B...... did vaccine trial ......had 2nd recurrence Nov. 2015.....same....this time did short course hi dose radiation.....(dec-jan 2016).....then started Leukine injections (march 2016)....though i know most poeple wil say leukine hasnt been shown to have any benefiit when used alone.....i am in my last cycle and about to finish the year long treatment.

Tuesday had Brain MRI, and CTs of neck, chest, ab, and pelvis...

I am thrilled to say they were all CLEAR.....and onc's words were "scans are perfect, you are cancer free".

Will stay on 6 month scan schedule and hope things stay this way....I am now 1 year and 3 months out from last recurrence.....(3.5 years from initial stage 1 diagnosis)  this is a good milestone since first two recurrences each happened about a year apart.

We all know this disease is tricky and can come back any time in any way...

For now though, I am going to enjoy the good news, and try and be a little less worried, at least until the next round of scans.

I wish posting good news didnt make me so sad for so many others here....

Best to everyone....

jenny

 

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MaPerny's picture
Replies 5
Last reply 3/12/2017 - 10:38pm

I wanted to share how things are going for us since we got Juan's diagnosis of LMD early January and Juan made the choice not to try the extremely tough treatment options with very uncertain prospects given his tumour burden.

At first, I struggled (and still do sometimes) with this decision but his thought process was that we had all suffered through so many treatments to no avail and he wanted good quality time with me and our son for however many months that he may have.

For the last couple of months, since stopping treatment:

Sleeping like a baby (better than in 6 years he says), no more nightsweats; Pain-free for first time in a year (they did an embolization on two very large rib tumours) ; no more nausea,; no more fevers or flu-like symptoms (often daily with various immunotherapies and trials); eating whatever he likes (filet mignon and chocolate icecream frequently)

He is relaxed and at peace, the level of anxiety in our house has dropped and he smiles so much more.

Saying all this, he is definitely sleeping more and beginning to get weaker, yesterday I got a wheelchair for him.  We know we have a limited time of this but it is so good for my 11-year-old son to be getting these fresh memories.  He is thriving at school at the moment.  It is so nice for both of us to see him feeling "better" and "tranquilo" for a while.

So he knew what he wanted for himself and for us when he made his decision and there can be no regrets.  I see it that he is in control and therefore in a certain way he hasn't let melanoma break him or us.

I share all this hoping that it may help some to read this as difficult decisions are made.

my love to everyone on this board

Maria

 

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sjl's picture
Replies 17
Last reply 3/12/2017 - 9:11pm

My husband had his third round of yervoy 2 weeks ago.  He's also on pain meds for tumor growth that is causing jaw pain.  Although he's had some fatigue intermittently since starting treatment and during his prior treatment of carbo/taxol, he's had a whole new level of fatigue for the past week or so.  Some days he can't make it to his office job at all and on others he can work only a few hours before he needs to come home.  The fatigue can come on fast.  It's overwhelming.  Bloodwork done yesterday showed everything to be normal, we were told.  They tested his thyroid and adrenals from what I can tell along with the usual RBC, WBC, etc.  Now they want to see him on Tuesday for more bloodwork.  I don't know specifically what they will be checking as my husband took the call and doesn't ask any questions.  Have any of you had this experience of overhwelming fatigue while on yervoy and if so, how did you deal with it? Is this normal???  Are there things I should be asking the doctor on Tuesday?

He's been in so much pain with the tumor growth and the pain meds just aren't helping.  He sleeps sitting up.  The tumors on his neck are now huge and we've been told that we just have to be patient a while longer.  I do understand that yervoy can take time to work.  I just with he would feel better while we wait.  If this fails, it's back to carbo/taxol to try to shrink them again and give yervoy more time to work. 

We've talked to a radiation oncologist who agrees with the melanoma specialist on the course of treatment.  He reccomended that we talk to a radiation oncologist at UPMC Hillman where he goes for treatment. just to see what he says but for now thinks we should stay the course.  Our options seem so limited.

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zfishberg's picture
Replies 12
Last reply 3/12/2017 - 2:12pm
Replies by: cancersnewnormal, zfishberg, Anonymous

Hello!

My husband had first Gamma Knife surgery in late October - 11 lesions were treated ( various sizes from 1 mm to 2.6 cm)

MRI has been performed in 2 month after the treatment - in late December. Results were very good - almost all lesions decreased in size and no new growth found.

The next MRI ( in February ) revealed 3 new lesions and changes in size of the previously treated lesions.

Some of the previously treated lesions increased in size by 1-3 mm.

I was told that the leasions that were previously treated can't be treated again.

Does anyone had similar results after the Gamma Knife procedures?

Does the increased in size leasions indicate that they are not "dead" and continue to grow or it could be result of the immuno- targeted therapy that he is receiving at the same time?

What is usually done for the lesions that were treated , decreased in size and then started growing again?

 

 

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Bubbles's picture
Replies 4
Last reply 3/12/2017 - 2:09pm

With all the pain and hurt that cancer, and for us - melanoma specifically, can cause, I thought this story might lift spirits just a bit.  It is a post from my blog and includes a link to an interesting discussion about cancer and melanoma, hosted by Katie Couric...on the Charlie Rose show.  

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/03/stupid-cancer-with-smile-and-bit-of-hope.html  

I hope for peace for those of you who have lost dear ones.  I hope for strength and courage for those of you actively fighting melanoma.  I hope for a life...for as long as each of us may have it...filled with friends and love and laughter for everyone.

I wish all of you well.  Celeste

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