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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katie1's picture
Replies 9
Last reply 2/4/2016 - 9:36pm

Given the recent FDA approval of adjuvant Ipi, I wanted to let people know my husband has been NED now for 30 months since starting the IPi vs Interferon trial. He was in the 3mg/kg arm of Ipi.  He only received the 4 induction doses due to side effects. He is stage IIIC (T4bn2cM0- with deep amelanotic nodular lesion).  He had rash and itching beginning after the first dose (and then ongoing which was treated with topical steroid and benadrly), ocular (after 3rd dose-resolved with steroid drops). and He also started with minor diarrhea after 3rd dose which coninued on and off managed by Immodium.  Following the 4th dose he developed hypophysitis.  He was treated with high dose steroids and all his hormones returned to normal.  However, after his taper from steroids he went into adrenal crisis and has been steroid dependant ever since (due to adrenal insufficiency). It took a little over a year for the dosage required to stabilize (required higher dosage of hydrocortisone over time).  He is currently doing really well and is very thankful for the trial option.

I wish all of you starting on Ipi the best.  Report all side effects even if they appear minor to your oncologist right away.  Make sure you are being treated by a melanoma specialist with experience treating these side effects.

Kate

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stevecathy's picture
Replies 8
Last reply 1/15/2016 - 11:11pm

My husband is stage 3A with original melanoma on 4th right toe that was amputated July 2105. He had a lymph node disection in the groin with 4 positive nodes. He has now had 4 infusion of yervoy ending Dec 3rd of 2015. Last week went to dermatologist for 3 month check , he had approx 5 to 6 spots by the surgery site that looked like blood blisters but came back melanoma. Wondering if anyone has experienced anything like this with yervoy? Thank you

Cathy Jewell

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Anonymous's picture
Anonymous
Replies 1
Last reply 1/9/2016 - 11:31am
Replies by: jamieth29

Sorry but I'm sick to death of the time wasted and the money wasted and the tests and the tests and the test.im going to skip it all and let the chips fall where they may.

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RifClitz's picture
Replies 20
Last reply 1/13/2016 - 7:12pm

Hi, Today the doctor told us that my father has Melanoma. They removed a birthmark from the back of his hip and it was positive.... The details are as follows:

 

Thikness: 1.1 mm

Clark Level : III

Nodular and superficial spreading

Involving Lateral margin

non-ulcerated

Mitosis: more than 4/mm2.

The doctor suggested another appt to see whether lymph nodes were penetrated.

 

I have a few questions. Given all this, what's the likehood that the lymph nodes were penetrated. Also, what do you think is the stage??? Please, please help!!!

 

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https://www.facebook.com/groups/906485416088740/#

 

Hello Everyone, My name is Erica. I am the caregiver of for my mom who was stage 4 oral mucosal melanoma. Her diagnosis came last May after a long battle with gum pain. Since then, she has had to have her upper jaw removed, her hard pallete removed and wears a prosthetic now and has had 30 rounds of radiation.

Stage 2 Lung Cancer was also picked up on the PETscan so a Lobectomy was in order and due to mets to the lymphnodes, chemotherapy has actually begun today.

I have been very active in the melanoma community since this past summer to help bring awareness to this terrible cancer.. whether MM or cutaneous melanoma. Awareness is key.

i also find it is hard to bring all of us together...so, we opened a group on facebook to bring us all together;

Mucosal Melanoma Warriors who are trying to find others like them. They suffers from MM in areas such as :

Vulva

Vagina

Nasal

Oral

Rectum

You will find the link at the top of this post. Thank you and best wishes.

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https://www.facebook.com/groups/906485416088740/#

 

Hello Everyone, My name is Erica. I am the caregiver of for my mom who was stage 4 oral mucosal melanoma. Her diagnosis came last May after a long battle with gum pain. Since then, she has had to have her upper jaw removed, her hard pallete removed and wears a prosthetic now and has had 30 rounds of radiation.

Stage 2 Lung Cancer was also picked up on the PETscan so a Lobectomy was in order and due to mets to the lymphnodes, chemotherapy has actually begun today.

I have been very active in the melanoma community since this past summer to help bring awareness to this terrible cancer.. whether MM or cutaneous melanoma. Awareness is key.

i also find it is hard to bring all of us together...so, we opened a group on facebook to bring us all together;

Mucosal Melanoma Warriors who are trying to find others like them. They suffers from MM in areas such as :

Vulva

Vagina

Nasal

Oral

Rectum

You will find the link at the top of this post. Thank you and best wishes.

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Maereard's picture
Replies 3
Last reply 1/11/2016 - 9:06pm
Replies by: Maereard, stars

Okay I need some advice from people who have experienced this and understand my fear. I had melanoma removed from my right shoulder blade about 3.5 years ago. This morning when I took a shower it hurt to touch. I checked it when I got out and there is a little red spot right in the middle of my scar. My dermatologist could not get me in today so I went to my oncologist. He touched it and said it's just a stitch. Nothing to worry about. Has anyone else had a stitch bother them so long after surgery? Should I schedule a dermatology appointment and ask for a biopsy or am I just being silly?

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Recently diagnosed as favoring Spitzoid Melanoma Clark level IV, Breslow 2.6 w/mitosis of 6. Lump was on top of my ear. Going to Milton Hershey Hospital which is part of Penn State. Anyone have experience there?
Hoping to go to Penn but they don't take my insurance.
Thanks

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jennunicorn's picture
Replies 2
Last reply 1/10/2016 - 11:50pm
Replies by: jennunicorn, Anonymous

http://www.puravidabracelets.com/products/melanoma-awareness

Just found this site with a lot of different awareness bracelets. The Melanoma awareness bracelet is $5 and $1 of every bracelet gets donated to Melanoma Research Foundation. Thought I'd share. 

-Jenn

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mrsaxde's picture
Replies 11
Last reply 1/9/2016 - 6:18pm

Well, I saw the doctor today after my latest CT scan a week ago. The news wasn't quite what I had hoped, but it wasn't bad at all. There have been no changes since September. Several small spots in my right lung are still the same size, as are the spots on my skin that are near the primary site. There is nothing new anywhere. I would have liked to hear that everything had shrunk some more, like it had in September, but I can deal with this.

A couple of things that maybe some of you can help me with....

1) I recall seeing someone's post on here saying that their oncologist believes that the "sweet spot" for Keytruda to kick in is somewhere around infusion #10. Does anyone know if that's accurate? Tomorrow will be #9 for me.

2) What's the possibility, given that nothing has grown, that what is still showing up on this scan is actually necrotic tissue that my body has not flushed away? Does anybody have any knowledge of, or experience with that possibility?

I'm actually doing well. Feel good, spirits good. My oncologist still thinks that Keytruda might help me beat this, given my overall tumor burden is very low.

-Bill

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Nanners10's picture
Replies 11
Last reply 1/8/2016 - 6:50pm

Hi all,

Just writing to see if anyone has any thoughts on the following:

Original diagnosis May 2002, WLE removed 2.24mm mole and no further treatment was deemed required.

Recurrence in regional (groin) lymph node basin November 2014. Groin dissection performed only one malignant node of four taken. Completed ipi/interferon trial in June 2015 (received ipi at 3mg dose).

One enlarged groin and one enlarged pelvic lymph node found on CT scan November 2015. Groin node was biopsied and determined to be melanoma. Surgery performed Dec 2015 to remove both lymph nodes. Three nodes were taken in total, the two enlarged ones were positive for melanoma, the other one was clear.  

Now, options that have been given are radiation and interferon. No trials are available for me as adjuvant therapy at stage 3b because I already had ipi. 

My dr. says that he doesn't think interferon will do anything for me because the ipi failed and it already has such low stats to start with. He says it will only make me sick for a year but nothing good will come of it. How does he know this? Is there anything to link interferon and ipi? Or is this just on the fact that ipi has a better track record than interferon and if that didn't work than chances are interferon won't either. I was considering interferon as a last resort if only for the fact that it would delay recurrence and who knows what drugs will come along in that time. 

Radiation is probably a possibility (waiting on my consult) but there aren't any studies that show increased overall survival (to my knowledge).

My dr. says that there are lots of treatments for me "down the road" because of my BRAF mutation. Problem is that down the road means stage iV and that's not very comforting.

I feel like I am just waiting on another recurrence.

I would love to hear from anyone in a similar situation to get your thoughts on what you have done or been offered. 

Nancy

 

 

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darinohio's picture
Replies 2
Last reply 1/9/2016 - 3:58pm
Replies by: _Paul_, jennunicorn

  I first want to say this is a very helpful forum.  i check in occacionaly the warmth and knowledge 

you all share is very comforting.  I have a question hopfully someone can relate to. 5 yrs ago I went 

thru a full year of inferon treatments for stage 3 nodular melanoma. i still see my oncologist regularly.

it seems about once a year a new mole or spot shows up. He has it removed and they always come back melanoma. Each year there are more spots. I see him in 2 weeks and i have 6 more suspicious spots.

  My question is how long does the interferon therapy last ? Are these considered recurrances?

Can I do another kind of therapy?  I'm just worried cause the spots are appaering more frequently.

                 Thank You and Gos Bless

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LisaName's picture
Replies 5
Last reply 1/11/2016 - 5:24pm
Replies by: LisaName, Janner

Okay, so to beging with I would like to say that 6 months ago I got a mole cut out because it was raised, big and peeling off. Result came as dysplastic nevi with proliferation(borderline thing, not enough to be called melanoma in situ, but not just atypical mole). I got re-exision, margins clear and having my check ups.
I am fair-skinned, but I don`t have that many moles. I have only one mole left up to 1 cm and the other one got removed.

So i have that 1 mole left on my tummy that is being watched by 2 docs: private dermatologist(who worked in big dermatoonkology hospital before) and dermato-oncologyst.  I have had it all my life, both doctors describe it as typical atypical nevus: up to 1 cm, brown colour, darker brown raised central papule. They have checked it 6 months ago 2 times(as i was very panicked) and month ago private derm said it is completely calm and no changes, dermato-oncologyst didn`t even pay much attention to it, only when student that was with us pointed out at this mole he said "No worries this is regular atypical nevus, lets just keep watching it".

But 2 weeks ago I became stuck on that mole, I was checking it everyday, rubbing it, stretching and touching papule all the time. Once I even rubbed it with napkin and here we go some mini dots appered on the top that were just dry. After that I started using moisturiser all the time and in few days those dry dot flaked off with shower. Now after 2 weeks it is almost back go normal and the papule is only getting more dry if in cold place. But you don`t feel it while touching, it is very soft. You can see it only in specific light that there is one tiny flake left that is smaller than 1 mm. It didn`t change size, colour, surface(anymore after that) and I am going tomorrow to doc to have it removed as i almost didn`t sleep and eat those days.

Janner, tell me please is it now this way that any changing mole after bad experience will now mean that it is turning? Is there at least one chance that it is just coinsidence that second mole got irritated? I am very scared for everything right now and wanted to know if all changing moles are dangerous and if this can be considered as one of the changes that you always mention to watch for?
And also docs checked me just 1 month ago and one of them sees melanoma patients everyday and he didn`t even get worried about the mole, is it normal?

thank you 

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mkirkland's picture
Replies 5
Last reply 1/7/2016 - 11:12am
Replies by: AshleyS, JuTMSY4, Anonymous, mjanssentx, CHD

Does anyone know of any therapy or remedies to help regain feeling after lymph node removal? I had my surgery in September at my right groin and haven't really regained much feeling in my upper thigh. It goes down the inner thigh, down to my knee and in the groin area. (And even a little further over) I know it's possible not to regain any but if anyone has any helpful hints I would greatly appreciate it. 

Misty 

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