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.

Expand/ Collapse Topic
 
Replies By
View Topic
Anonymous's picture
Anonymous
Replies 9
Last reply 7/10/2015 - 3:22pm

My father recently was diagnosed with metastatic melanoma stage 4.  It was discovered during a routine biopsy on his head.  He has had a pet scan and it shows no attachment of any kind to his body.  How is it possible to be at stage 4 but not have anything showing in the lymph nodes, organs, etc.?  He is now recieving 6 weeks of radiation on his head.  He was told this was to hopefuly kill anymore spots.  Again I am confused.  To my understanding Metastatic melanoma cannot be cured.  What am I missing? 

Login or register to post replies.

uccio2014's picture
Replies 23
Last reply 7/10/2015 - 5:21am

TY

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 1
Last reply 7/9/2015 - 10:33pm
Replies by: arthurjedi007

Has anyone heard of a condition where Yervoy (ipilimumab) causes the bone marrow to stop making white blood cells?  I need some quick help ... 

 

Thanks in advance

Kim

 

Login or register to post replies.

pookerpb's picture
Replies 8
Last reply 7/9/2015 - 7:25pm
Replies by: Anonymous, pookerpb, jamieth29

I am new to this forum and am the wife of a stage IV melanoma cancer patient. Husband was first in 2008 when husband was 37. He had a nodule (>4mm) removed from calf. lymph nodes tested negative. Was on interpheron for one year.

in 2014 it came back in small intestine. Had resectioni done and on IPI/Interpheron trial for 8 mos until some of the lymph node markers progressed.

Jan 2015 started the Keytruda/Peg Interpheron trial. Showed shrinkage with first 12 week scan, and then last week scans showed some stability with very minimal growth in others.

Had to come off treatment due to Pneumonitis. On very hight dose prednisone for a few weeks and hopefully back into study in 6 weeks (will have missed 2 doses).

We live in Northwestern PA and see Dr. Kirkwood in Pittsburgh who is a melanoma specialist. we have 2 daughters age 13 and 15.

The unfortunate thing is that my husband has a concerete business which is very labor intensive. I dont know how he goes to work each day and I hate seeing him suffering from his job (very physical).

Just wanted to say hello....

 

Login or register to post replies.

Bubbles's picture
Replies 10
Last reply 7/9/2015 - 6:41pm

How do you be, my friend?!!!  Wishing you well.  Hope you are at least a bit better.  c

chaoticallypreciselifeloveandmelanoma.blogspot.com

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 15
Last reply 7/9/2015 - 1:17pm
Replies by: Anonymous

Does anyone know whether a 2 x 3 cm superficial spreading melanoma would show up on a PET CT or plain CT? 

I always think of these questions right after appointments, with another 3 months before I go back in.

My last PET CT was clear, but I got to wondering:  If superficial spreading melanoma spread internally, how big would it have to be to show up on PET?  Unless it took a more nodular form, it seems like it could grow for awhile before being detectable. 

Would it even show up at all on a regular CT scan? 

Login or register to post replies.

sassega's picture
Replies 1
Last reply 7/9/2015 - 12:51pm
Replies by: Janner

Hello, I'm a 65 year old female and in the past year noticed that several of my toenails developed black lines of various thickness and darkness of color.   They cover most of the whole toe...the right second toe, and fourth toe on left side, with a new single line on the second toe, left side.   I thought these were the result of getting ugly, old lady toes.  But a friend got melanoma on her foot and I decided to look up toenail melanoma and saw some familiar pictures.  It seems to me, though, that there would be a spot on the skin, under the toe and I don't see that.   I clipped the nail and the toenail clipping had the black line througth it.  The nail just keeps growing with the same discoloration all through it.   So would it just be a discolored, ugly old lady toenail since I don't see a spot on the skin?

 

BTW, I am Native American and have a Nevus of Ota on my face, and doesn't involve the eye.   I also have sundanced about eight years and have been a little paranoid about sunburned feet all those years.

 

Should I be concerned?

 

Thank you,

Glenda

Login or register to post replies.

Rita and Charles's picture
Replies 8
Last reply 7/8/2015 - 10:00pm

Wish us luck - I have a good feeling that he will be good. 

Rita

Rita

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 6
Last reply 7/8/2015 - 4:47pm
Replies by: hopeagain, Kim K, Anonymous, casagrayson, Wader

Hi, 

We know Dr., Steven O'day moved from the Angeles Clinic to Beverly Hills Clinic, but we are patients from the past and wish to consult with Dr. O'Day about a side effect that now appeared (a few years after end of Ipilimumab treatment). Does anyone know his email or where he is?

Login or register to post replies.

tangerine1953's picture
Replies 2
Last reply 7/8/2015 - 7:48am
Replies by: jamieth29, Anonymous

Hi all.

The reason i post is because of a mole i have on my arm. A couple of weeks ago i noticed a mole on my arm had raised slightly, the thing that scared me the most is that i have just had a holiday in the sun. The mole hasnt grown in size apart from raising slightly, it isnt itchty, painful or bleeding either. The mole is about 2 mm in diameter, i have been to the doctors and he quickly dismissed it as being nothing. I noticed like a black spot inside the mole, this has now risen to the surface and formed a scab on top of the mole and the colour of the mole seems to have changed to like a flesh colour. Do i need to go back to the doctors or could it just be irritated or something??

 

Thanks in advance for any advice

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 3
Last reply 7/7/2015 - 11:26pm
Replies by: Anonymous, Janner, Colleen66

I have searched high and low for answers to my questions, but kind of get run around answers. Everyone here seems very educated on the topic, so I thought I would give it a shot here. 

I have never watched my moles....didn't ever think about melanoma. Then the doctor removed two that looked odd. The first pathologist could not come up with a clear determination on classification, so it was sent to a second pathologist. This pathologist sent report saying one was severely atypical and the other was moderately to severely atypical. Neither had clear margins so I am having both excised to get clear margins. When I went to dermatologist for first time, she saw another suspicious one, and it came back moderate but had clear margins. 

My question is...I didn't realize these were odd, so never watched for change. I have several others which are odd looking now that I have done a body check. Since I have no idea which have changed, and which have always looked weird, and all three have come back atypical, should I be concerned that there could be one that is melanoma? I'm not sure what to do now. I don't want to wait around and have the bad one missed, and I cent find answers on what I should do. 

 

Thanks!!

Login or register to post replies.

Claudia Cornwall's picture
Replies 5
Last reply 7/7/2015 - 9:36pm
Replies by: LaurenE, kylez, paz58, tschmith, Mat

My husband's treatment with Pembrolizumab was successful, but he has become very depressed. The treatment did affect his thyroid and he does take synthroid now to replace what his body can't produce. According to recent blood tests, his thyroid level are now normal. However, he remains depressed.

It is so weird, you'd think he'd be very happy to be in remission.

Has anyone else run into this?

Login or register to post replies.

Joe.Pro's picture
Replies 3
Last reply 7/7/2015 - 9:27pm
Replies by: LaurenE, paz58, tschmith

My history:

Diagnosed with Acral Lentigous Melanoma April 2nd 2015 on bottom of my foot.  PET scan confirmed groin nodes were involved.  Surgery April 30th, removed tumor from foot and CLND right groin.  13 nodes were positive but the "deeper" nodes were free of cancer.  

Last week I went to have the skin graft surgery performed on my foot and upon closer examination by the plastic surgeon he biopsied a few spots that looked suspicious.  One of the spots came back positive which prompted a PET scan and brain MRI.  Results today revealed a tumor the size of a small grape and some disease in the lining of my lung as well.

I am receiving treatment at Dana Farber in Boston so I am seeing Melanoma specialists.

My original tumor did not reveal any of the BRAF mutations so I am BRAF wild type.

I am 34, wife and 4 young children - I have a lot of life in me and will do anything to watch them grow up.  That being said, I am curious to what you wonderful folks think I should attempt first for treatment.

My oncologist thinks the IPI/NIVO combo is my best bet to start and judging by the response rates I don't necessarily disagree with her but I am also intrigued by TIL.  

I would love all of your input and thoughts as I know many of you on this forum have a wealth of knowledge and expertise dealing with this horrific disease.

Thanks so much for your time and thoughts!

Joe

Login or register to post replies.

jamieth29's picture
Replies 17
Last reply 7/7/2015 - 8:18pm

First of all i want to thank everyone for responding and thank the users who regularly post here. My name is Jamie I'm 36 year old male with 3 young kids. I have been reading this site for 2 months. Here goes, Diagnosed late April...lymphendectomy on left groin mid may, pathology came back with lymph node involvement in 5/13 nodes. Two weeks after surgery i had a in transit legion show up right by area where mole was. Had in transit spot resected. June 17th had ct scan that showed enlarged iliac node...positive biopsy so back to surgery i went. Surgeon removed 5 deep iliac nodes 3 were positive. Still 3c as it is still regional nodes. I am aware of all the numbers and stats for my situation as i feel I've done as much research as i could have since I've been diagnosed. I have ruled out interferon as we know the the odds of it working. I've narrowed things down to a vaccine trial at uw madison that i admittedly dont know much about other than its a cdx 1401 a cdx301 and the ny-eso-1. Or a trial of ipi/nivo in adjuvant setting. What i am asking for thoughts on is advice on the ipi/nivo as adjuvant. what statistically might be better? There are some results on ipi in adjuvant setting but not much on nivo. The kick in the ass is my local doctor has applied to my insurance company for ipi as adjuvant and they have verbally agreed to pay for it as 3c even though it is not fda approved. He presented trial data of the 951 patient trial of ipi as adjuvant. So my dilemma is if the 50/50 shot of nivo might be worth it. If i join the trial i have a 50% chance of getting ipi in the trial and would have to drive 3.5 hrs to get it when my local doc is 15 min away. I also am not 100% sure of implications for future use of nivo/ipi if i progress to stage4 but feel i need to take the biggest swing i can at this before it becomes metastatic to other parts of my body...if its not to late. Also just want to thank the knowledgeable posters here again and hope you realize how much you are helping people even though not everyone that has been recently diagnosed starts a post. The last 3 months i cant even explain the fear that has envolped me. The thought of leaving my kids has been almost to much for my mind to bear. The uncertainty of the future hurts but i know i will do everything in my power so that doesn't happen. It is such a powerless feeling to go from a fit hard working blue coller guy that never had a thought of dieing young. To staring death in the eye. Any questions for me i will answer quickly.

Thanks again Jamie

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 3
Last reply 7/7/2015 - 1:17pm
Replies by: Anonymous, jamieth29

Just a little background, 3b, positive ulceration, mitosis 18, two years as NED. I am still seen every three months but no scans and I have never had a PET scan that everyone on here seems to have routinely. Do they just stop doing scans after a certain point, am I missing something?

Login or register to post replies.

Pages