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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Anonymous's picture
Anonymous
Replies 4
Last reply 9/2/2016 - 11:55am
Replies by: Bubbles, Ed Williams, MoiraM

Has anyone seen any research on what may make someone more likely to respond to treatments (specifically ipi and radiation).  Our dietitian said not to have too many fruits and vegetables during radiation-something about too many free radicals.  I know this is the million dollar question, but just curious what we can do to improve the odds-3c.

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SueDan's picture
Replies 2
Last reply 9/2/2016 - 12:05pm
Replies by: SueDan, Anonymous

My husband (Dan) was diagnosed stage 1 in October 2014, but the Drs. had varying opinions on the length of time to have 3 month follow-up visits so I'd appreciate any insight anyone has.  Dan wants to cut down to 1 or 2 visits a year now, but that makes me nervous as he always has something frozen or biopsied at every 3 month visit (biopsy results are anywhere from benign to severely atypical).  Thanks for any info you can give us!

Sue Byre

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Joycem's picture
Replies 7
Last reply 9/2/2016 - 5:20pm
Replies by: Joycem, Bubbles, Ed Williams, Anonymous

Hi

While obsessing/second guessing over my decision today to decline adjuvant interferon recommended be oncologist, I came across this article that I felt was helpful, but I am unclear what "translational oncology" (in "the Oncologist-Journal of Translational Oncology") means. Is this a mainstream reliable source in your opinion? 

http://theoncologist.alphamedpress.org/content/10/9/739.full

I'm guessing since author is associated with Sloan-Kettering this is pretty solid source? 

There seems to be some murkiness as to whether I am properly staged at 2C or 2B according to my oncologist, (which significantly impacts my prognosis.) He said he was going to seek clarification from pathologist. I guess what is, is tho, and I don't think it would change my decision or follow up plan.

Best to you all, 

Joyce

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casagrayson's picture
Replies 2
Last reply 9/2/2016 - 2:01am
Replies by: Anonymous, jennunicorn

I was just looking over my husband's pathology report from his first primary.  The report says that the lesion is melanoma in situ.  However, it is 0.4mm deep, references a Clark's Level II, and has a mitotic rate of 1-2. 

I think I remember Janner saying that in situ has no depth listed.  Is that right?  What would be the staging on this lesion?

Strength and Courage,

Susan

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Aaron's picture
Replies 11
Last reply 9/5/2016 - 9:44am
Replies by: Momofjake, Aaron, BrianP, JoshF, KAF, Bubbles, Anonymous, Julie in SoCal

"Significant shrinkage" generally aren't words you like to hear but I'll take them today. Have gone through a lot: damaged pituitary gland, vitiligo, now the suspicion of pneumonia (do not believe it is melanoma) but I'm beating the cancer right now and will continue to with the help of God. The clinical trial may keep me on board for now despite my responses but it is unknown when my treatments will resume.  Now to start antibiotics 

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michaelinsocal's picture
Replies 6
Last reply 9/2/2016 - 3:23pm

Hello fellow melanoma warriors. Just a quick update on me.

DX stage 3A Nov '13. Been nearly three years, which is a bit of a milestone for anyone who's fought the good fight. 3rd year CT scans came back "all clear", NED. Praise the lord and the wonderful support from family and friends, my wife in particular and of course, this community which helped me coupe of all the initial uncertainty.

There is never a good time to get any type of cancer but things are changing for skin cancer. The awareness is spreading like wildfire and the research and options to fend this horrible disease off is expanding. Its definitely not the same fight it was 5-10 years ago.

Never lose hope and live life to the fullest.

Thank you, community, for all of the love and support.

Michael in SoCal

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Lee Parlier's picture
Replies 4
Last reply 9/1/2016 - 4:17pm

I just got the news from my doc at Duke that she she positvive that I am not a resonder to yevoy. She has recommended a trial involving Durvalumab, Tremelimumab, IMCgp100. Does anyone have any knowledge or experience that you could pass on? Any info would be appreciated.

Lee Parlier

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My husband is being treated for Stage 4 Metastatic Melanoma.  Had the initial spot removed from his neck 8 years ago....and this past May (2016) he had some terrible symptoms that led to removal of a lesion on his cerebellum followed by a week of radiation on the mets on his brain (3-4).

He is currently being treated for mets in his chest and abdomen as well using Mekinist and Tafinlar (at Moffitt Cancer Center).

I know there are people out there that are living with this disease long term and some that are long time NED.  It would be terrific to know those people are out there.

 

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jade1111's picture
Replies 2
Last reply 8/31/2016 - 8:40pm
Replies by: jade1111, Bubbles

Hello.. So my mom is in clinical trial with Optivo (infusion every 2 weeks) and epocadostat (pill every day). She had to take a month of after her intial infusion and pills due to pretty severe rash and reaction to what they think were the trial pills. She has had a total of 4 infusions as of yesterday and they did 8 week CT scan yesterday as well (3 under belt total prior to scan). At first glance (still wiating for report) Dr said all looks the same. But it got me thinking when do individuals tend to start seeing reductions generally on scans? 3 months.. 6 months...

Also aware that if things are looking the same.. thats ok for now! No progression is fine as well!

They also removed a little mestastasis from her arm.. not sure if its a traveller or another primary... and also interesting going to do the t cell biopsy on it also to see if any t cells infiltrating. Her last t -cell biopsy showed a very low number.

Best and healing to all!!!!

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Jennifer516's picture
Replies 8
Last reply 9/3/2016 - 10:20am

Hi,

I'm new to all of this and was hoping someone would be able to give me some insight into ipilimumab treatment and what this means.

In 2015 my dad was diagnosed with melanoma, they operated on the area this was found and we assumed all was well. At the beginning of this year we then found out this had spread to the lymph nodes in his groin (having originated on his foot). The lymph nodes were soon removed and we were told they 'thought' he was in the clear. 

Having always been active and proud, it was around this time my dad stopped discussing the cancer with me and left me under the impression he had been given the all clear. I was aware he was undergoing some radiotherapy but had thought or possibly hoped this was just a precautionary measure. 

I've since came across some of his information to say he is now going to undergo treatment with ipilimumab however I'm unsure exactly what this means and can only get so much information from search engines. I've managed to learn this is mainly done when people have stage 4 melanoma, which suggests that I was incorrect in thinking he had been in the all clear.

Whilst I fully respect my dad's decision to keep certain information to himself, I'd like to learn as much as possible about the treatment. Also if it is in fact stage 4 melanoma, what exactly does that mean in this day and age in regards to treatments and severity etc.

Any information will be hugely appreciated. Thank you. 

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hubbards's picture
Replies 8
Last reply 9/1/2016 - 10:22am
Replies by: Anonymous, hubbards, Patina, desertsun, Polymath

Hi all

I am new to this group and so glad to have found it.  Thank you to Melanoma Research Foundation for your initiative, as this journey is challenging in so many ways and it is good to be able to share and encourage.
 
Paul, my husband, has stage 4 metastatic melanoma.  It is in his liver, lungs, kidney's, stomach, spine and brain.  He was given 3 months in 2014 and by the grace of God, he is still with us today. 
 
Paul is on Nivolumab at the moment and we know the side effects and what to expect but we can't seem to find out is, how do you know if it is working? We want to find someone who has been on this medication or who is still on this medication and find out from them, what their experience has been.
 
Here is a little history:
Paul had an operation in about 2004 where they cut out a melenoma from his back, after which he was on Interferon for a while.  Every 6 months he had his check up and in Feb 2014, he was diagnosed with Metastatic Melanoma.  He was put onto a trial called, Vemurafenib. Being a trial, CT scans were done and we could see the tumours shrinking. 
 
In Jan 2016, there were more tumours and the trial was delcared a failure. 
 
He then went onto Ipilimumab but only managed 2 treatments before they found the brain tumours - this had then failed too. 
 
Now he is on Nivolumab and we don't know if it is working. No CT scans have been done.  He has lumps all over his body and 4 tumours that are visible on his chest and back.  There are lumps showing themselves continuously.  Paul get severe pain which lasts between 4-9 hours later - he says it comes suddenly and leaves suddenly.  I have taken him to hospital with this pain and nothing helps.  They gave him morphine and he could feel the morphine working in the body but it did nothing to the pain and then the pain just stopped.  
 
If there is anyone out there who is experiencing this or has researched - how to know if the drug is working (not side effects), I would so appreciate to hear from you. 
 
Strength to all those with melanoma and to their family
 
Kind Regards 

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RedVelvet's picture
Replies 3
Last reply 9/1/2016 - 4:16pm
Replies by: Kim K, jvictoria, debwray

I have this brown/ to blackish stripe (about 2mm wide) on my big toe nail. My dermatologist suggested a biopsy done as it may or may not be Subugual Melanoma but their clinic does not perform the PUNCH BIOPSY on NAIL. I am looking for a Dermatologist or Surgeon that performs Punch Biopsy on the (Toe) nail unit. I prefer this procedure as it's less trauma on the nail. I have asked my GP and Dermatologist for referral to a practitioner but no avail (they don't know anyone that does punch biopsy on nail unit). I have tried searching myself calling around and also online it seems more common in USA than in Canada. 

Does anyone know a dermatologist/surgeons that performs Punch Biopsy on Nail Unit in Canada perhaps in Toronto, Canada?

Any information is greatly appreciated.

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Hello everyone,

I was wondering if there was anyone out there that has run into Adrenal Insufficiency post Immunotherapy treatment? My treatment ended late May 2016 (Nivo) due to side effects and a recurrance in a lymph node. Continued to feel poorly and was put on Prednisone for 4 weeks 40mg tapering down to 10mg. Felt great and then a few weeks passed and began to feel poorly again. Finally last week, I was refered to an Endrocrinologist and I was diagnosed with Hypophysitis / Adrenal Insufficiency and have been put on Hydrocortisone 20mg morning 10mg afternoons. I'm feeling ok but not as good as when I was on the Prednisone. Better, just not 100%... maybe 85%. Also, Thyroid is weak so they put me on a low dose supplement. I'm an athlete and during this time I lost at least 40% of my muscle mass. Trying to gain some back but it's a slow tiresome process in my current state.

Was wondering if anyone else has gotten this and how they're dealing with it? Are you on Prednisone or Hydrocortisone? How do you feel? Any long term effects, things to watch out for? Were you able to get completely off the steroids?

Finally, does anyone have recomendations for Endrocrinologists that has experience in Immunotherapy side effects. There are a lot of good Endros out there but few with this experience.

Thanks!

Juan

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Kim Tucker's picture
Replies 10
Last reply 9/13/2016 - 12:43pm

 

After countlss hours of researching and reading your stories, I am adking for input on my 63 y/o father.  Please see history below.  I appreciate any and all comments, thoughts, similar personal stories, etc.  Thank you all~
 
 
Treatment History

August 26, 2016~Upon surgical excision (with anesthesia) of scalp lesion performed by Dr. Arrington-Penninsula Plastic Surgery, Salisbury, Maryland, it was learned that unlike the numerous other removals of basal and squamous cell cancers my father had undergone, this was in fact Melanoma. 

Pathology : Superficial Spreading Melanoma
Thickness Greater that 6mm
Mitotic Rate 4.1/mm
Present Perineural Invasion
Pathologic Stage: pT4a

Margins were not clear and both peripheral and deep margins were involved by invasive melanoma.  

8/30/16 Seen by Dr. Anthony Tufaro-Johns Hopkins Kimmel Cancer Center
Currently waiting on schedule of MRI and CT scans to determine if present in organs. Sentinel Node Biopsy scheduled in approx 4 weeks (earliest possible) with additional removal of disease to aquire clear margins.  This will also include skin graft. 

 

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