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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Jennifer516's picture
Replies 2
Last reply 8/31/2016 - 5:38pm

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 2
Last reply 8/31/2016 - 5:33pm
Replies by: Anonymous, 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 2
Last reply 8/31/2016 - 4:34pm
Replies by: 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 7
Last reply 8/31/2016 - 5:42pm
Replies by: jennunicorn, sadlerla, casagrayson, Polymath, debwray, Anonymous

 

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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Anonymous's picture
Anonymous
Replies 4
Last reply 8/31/2016 - 8:19am
Replies by: Jubes, kylez, Patina

Help please! My husband has stage IV Melanoma with slow progression since 2014. While IPI and Nivo failed, his slow growth gives us time to try new meds. About 6 weeks ago he started Taflinar and Mekinist with minimal side effects, other than worsening of his Rheumatoid Arthritis which came on with the  Nivo. However lately, last 3 weeks or so, his mood swings toward me and our daughter have worsened. He's not physical but says really hurtful things and his anger and frustration go from 0 to 60 over the smallest things. I got to listen to what a terrible wife I am for two hours since I didn't say 'the right thing' this morning over a minor issue. Our daughter is 8 and if she doesn't listen the first time he snaps at her. I know he's stressed but his tumors have all been very small and now pretty much disappeared and our doctor tells him he's at no risk. I'm just wondering if anyone else has seen this type of side effect. It's not listed in the literature but I did see an old post here from another care giver. This is new for him and I'm afraid to even bring it to his attention. I'm beginning to withdraw and that's not going to help either of us. Plus I've been dealing with my own critical illness on top of it. Thanks for listening. 

Footnote: I used to be a regular poster on here but feel it's best to be anonymous on this topic. I, too, struggled being on the site after Artie passed. 

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Alison720's picture
Replies 2
Last reply 8/30/2016 - 11:05pm
Replies by: Alison720, Anonymous

Yesterday my dermatologist called me to tell me that the mole they did a scrape biopsy on my back was melanoma in-situ. They scheduled me to come and have an excision on September 13th. They said they are sending what they get from the excision to pathology. Does this mean that the diagnosis could change from in-situ to another stage? Or does it stay in-situ and they will remove everything during the excision so it doesn't develop further? 

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Julie in SoCal's picture
Replies 4
Last reply 8/31/2016 - 10:42am

Hey there Friends!

Yesterday I had an intransit met biopsy and the slides sent to the good folks running the NY-ESO-1 trial.  I'm not enrolled in it, but have agreed to have my tissue sample tested.   I should know if my tumor has the NY-ESO-1 protein in a couple of weeks when I go back to have my stitches removed. 

In the mean time, I'm hitting the immuniotherapy "science books" as hard as I can to learn as much as I can about them.  For this history & literature & art loving student, this is a bit of a brain freeze.

So, my question to you all, and especially the ratties out there, is how did you evaluate and then ultimately choose which clinical trial was best for you?   I read the research proposals and I'm a social science researcher, so I get the idea of what's going to happen and what the trial is aiming for, but how do you know, how do you evaluate which of the research drugs and approaches are promising- assuming all research projects are not created equal?  How did you find the right overlap between a trial's goals (further science) and your interests (kicking mel to the curb?)  How did you evaluate this?  How did you evaluate the science behind the trial's theory of change?

Thanks for all of your help!

Julie

 

 

Stage 4  (TXN2cM1b)-- 2008 WLE, SNB, LND, HD-INF, GM-CSF, (intransits) 2013 IPI, (intransits) 2014 PEMBRO, (intransits and lung met) 2016 ???

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jamieth29's picture
Replies 19
Last reply 8/31/2016 - 5:35pm

Just got done at docs...pet/ct showed a spot that little up in my ribs but I took a good blow there about a month ago and thought I actually broke them so hopefully nothing. Also a spot in right axilla and spot in throat. Doctor said he isn't concerned about them because there is no masses and very low such. I did some hard manual labor yesterday not even thinking about scan. He said not to worry and we'll just watch them for scans in 3 months. Brain mri- no new lesions and spot that hemorrhaged shrunk from 3.7cm to 15mm. We are unsure if it's leftover blood from radiation or burst from disease but it's going away so good news. So all in all I think scan went well maybe pet scan is not needed every time as something always seems to light up a bit but always different spots then gone next scan. Thanks everyone for the thoughts and prayers it helped a ton. Special thanks to Josh for the email this morning telling me to be confident and the talk about anxiety. Get to live for 3 more months worry free. Fishing hunting and loving the wife and kids here I come!!

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maboco3's picture
Replies 2
Last reply 8/31/2016 - 7:57am
Replies by: Patrisa, JoshF

Okay. I was diagnosed about 5 weeks ago after a painful lesion was removed from the middle of my back. My initial appointment with the cancer center is tomorrow, and although I've been dealing quite well with it, I'm nervous. Labs are Breslow 3.1, Mitotic rate 15, and the such. I know what to expect tomorrow from medical websites, but thought I'd ask here for first hand knowledge from real people. Thanks for any advice.

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Anonymous's picture
Anonymous
Replies 4
Last reply 8/31/2016 - 12:35pm
Replies by: stotes, Prd10, Alestrada88

Has anyone here ever had a baby after being diagnosed with melanoma? Any reoccurrence? One dr told me no more babies and the dermatologist said she had never heard of that and she didn't see a problem with it. My husband and I want a big family and it is breaking my heart thinking of not having more kids. Please any advice or links would be helpful! I've been researching so much but can't find much information!

thanks everyone in advance! 

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Momofjake's picture
Replies 9
Last reply 8/31/2016 - 9:22am

Hi to all my friends and loved ones here!

I took the break you do when you get the chance for some "normal" good times:) Its tough to start off the forum with losses. Since Artie I can barely log on. Sept 12 marks 2 years since Jakes diagnosis. He was such a kid at 17. That was that time of shock.  He is now 19 and wise beyond his years. He is in charge of his medical decisions now. It's a tough age. He has been hard on me. Only me. Still quite pleasant with others, but not being able to go do his life has been trying!

K. Jake had a very heavy tumor load and had tried keytruda after all the chemo, radiation, interleukin, interferon, surgeries, etc. Nothing worked. SO they went w the MEK/TAF combo. He spent 10 days violently ill. He stopped treatment for a few days then pushed on w just the TAF. The docs have pushed him to add MEK at a lower dose but he refuses. It's been over 3 months. His first scan showed huge improvement. He looks incredible!! He is really active. He is on this completely focused mission to be "cured". He eats crazy good, takes tons of supplements, does some holistic/unconventional stuff that I barely know. He tells me very little. He is still a kid but is of age to do this and truthfully it's his body. He is smart and he believes he will win. He just cancelled a trip to Hawaii w his dad and is ALL in until his scan 9/13. It seems much hinges on this scan. He has told me he is needing to be well or be done. I understand. He is a young, adventurous, smart kid. All his friends and siblings lives have kept moving on. He says he isn't interested in living just to stay alive--I get that. So, his days are filled w blending, napping, pills, gym, little brothers, avoiding mom, and believing. He reads tons on the placebo effect etc and is wrestling with his body, mind and faith. We spent the summer doing amazing things and traveling like crazy!! There is my novel! Sorry. Hope this is good news given we deal with so much heartache here. I know TAF is short term....but who am I to tell anyone they can't win:) Just following Jake. Trying to help him. Trying to not be sad watching him struggle. And trying not to think too much about the scans coming. I think about many of you so often. I will report on scans and keep those fighting and the families of those who have lost in my prayers. 

Kerri--momofjake

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Anonymous's picture
Anonymous
Replies 0

Anyone hear from Janner lately? Haven't seen any posts just wondering. 

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FengSFamily's picture
Replies 13
Last reply 8/30/2016 - 10:01pm

Dfeng lost his battle with Melanoma on August 6, 2016. He is survived by three young daughters ages 5, 3, and 2 years old, as well as his wife.     

 

https://www.melanoma.org/community/profiles/dfeng/activity

 

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