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
karima49's picture
Replies 3
Last reply 2/5/2016 - 9:59am
Replies by: Anonymous, marta010, Scooby123

My mother was diagnosed with Stage 4 in December 2015. She has been on the Mekinist/Tefnlar combo for about a month now. She has had a major problem with nausea and vomitting. She went to DR 2/1/16. She is now to cut dosage in half. Once in morning and once at night instead of twice in morning and twice at night. It seems to be doing a little better but she is still just so weak. She can only do something for about 10 minutes and then she needs to rest. Is anyone else experiencing this and is there anything helping you? She has lost 23 within about 2 months. They want her to eat more to see if that helps get some strength back. Please help with any suggestions. Thank you. 

Login or register to post replies.

Momofjake's picture
Replies 16
Last reply 2/6/2016 - 7:02pm

Hi my friends,

i have had a hard time getting on here since Artie. But I need a little advice. Jake has been on keytruda and a bone strengthener for almost 8 mo now. The first scan showed big improvement and the visible tumors shrank completely. Then Jake moved 15 min from home to try a light semester of college. He shared a room w his brother:) So glad he went! But next scan no shrinkage and it grew. 2 worst new mets--throat and rectum. All internal tumors remained--liver, lungs, spine, bones, sinus...he has normal side effects w white eyebrows, white side burns, some vitaligo and occasional mild rash that doesn't bother him and of course fatigue. 

So...now he hasn't been out of his bed in 3 days. Today will be 4. It's been 10 days since treatment. He has severe aches and now a fever. Loss of appetite and now a little nausea. His last blood work showed his kidney numbers weren't great, liver struggling a little and tumor marker up again. Before this he has been very active. Fatigue though. He has moved back home to focus on his body. It's all he does 24/7. Sleep a lot, eat crazy healthy, try to gain weight, gym. He does nothing else and all his friends are gone. It's hard to watch. 

I do all I can for him. k. Day 4 or more in bed. TIME TO SEE THE DOCTOR??? He says it feels like flu and doesn't want to go in. 

Oh how I hate the decisions....so many decisions. 

Thanks for getting thru the novel. 

Prayers and love to you all who are in this!

Kerri--mom of Jake

Login or register to post replies.

greatladywilson's picture
Replies 2
Last reply 2/4/2016 - 8:29am
Replies by: chrisholder, Momofjake

Anyone with the diagnosis of sinus mucosal melanoma?  2 years out but having lots of issues.  Am I alone? 

Login or register to post replies.

gregor913's picture
Replies 12
Last reply 2/6/2016 - 6:06pm

Hey everyone so I finished my second dosing of ippi and have my 3rd scheduled for Feb 15. Right now my oncologist has me scheduled for 4 doses total of the 10mg/kg. If everything goes well after all 4 doses here is my next question. I was reading the yervoy website for preventive care and it says that you should have the 4 initial doses then every 12 weeks for 3 years maintenance doses.

Was just wondering the people who are taking ippi right now if there onc has them scheduled for the maintenance doses because mine does not. Do you need the maintenance doses?

thanks Greg

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 15
Last reply 2/7/2016 - 4:47am

What would be a worse prognosis for stage 3. Having a ulcerated melanoma with micromets or having a macro node without ulceration. Just curious anon

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 0

Join 2000 patients and caregivers for a great/fun event!  Go to  http://melanomainternational.org/

 
 

Login or register to post replies.

Tessie64's picture
Replies 4
Last reply 2/9/2016 - 2:45pm
Replies by: ldub, ashley_K, Janner

I had a biopsy on my toe about six weeks ago, which came back as moderately atypical. I actually go tomorrow for further excision. But over the last 2 days, there has been a black growth developing on the punch biopsy sight. It's already as large as the original mole (5 mm). Could previously missed cells develop that quickly to melanoma?

Login or register to post replies.

Totally Blessed's picture
Replies 2
Last reply 2/3/2016 - 12:30am
Replies by: ldub, Totally Blessed

My husband was diagnosed a couple months back with stage 1b Nodular Melanoma on his right shoulder. No ulceration, no Mitotic rate, breslow depth 1.4 mm, Clarks level 3/4. WLE and sentinel node scheduled for Feb 11th.

My question is this;  for the past couple months he's been experiencing pain in the same shoulder. We have just assumed it's related to an 'over used, 65 year old' shoulder.  We are with a Melanoma specialist in Ann Arbor. My husband has not shared this pain with his Dr. .  We don't want to look for any more problems but we don't want to miss any either. 

Should we be getting this addresses before his surgery on the 11th? By the way, there doesn't seem to be any swelling, no node swelling, just pain.

Help?

Login or register to post replies.

My husband was diagnosed a couple months back with stage 1b Nodular Melanoma on his right shoulder. No ulceration, no Mitotic rate, breslow depth 1.4 mm, Clarks level 3/4. WLE and sentinel node scheduled for Feb 11th.

My question is this;  for the past couple months he's been experiencing pain in the same shoulder. We have just assumed it's related to an 'over used, 65 year old' shoulder.  We are with a Melanoma specialist in Ann Arbor. My husband has not shared this pain with his Dr. .  We don't want to look for any more problems but we don't want to miss any either. 

Should we be getting this addresses before his surgery on the 11th? By the way, there doesn't seem to be any swelling, no node swelling, just pain.

Help?

Login or register to post replies.

Nanners10's picture
Replies 3
Last reply 2/2/2016 - 7:02pm
Replies by: WithinMySkin, Anonymous, Nanners10

Hi all,

Just looking for any advice that anyone can give. I had a CT scan (was experiencing some chest pain) and the results were so obscure. My dr. wants to follow up with a pet scan or another CT scan in a couple of months to see the difference. He didn't really go into details as to what causes (other than melanoma) these items and I was wondering if anyone has run into these before and if they turned out to be something or nothing. I know that maybe I am not giving enough info but don't have a copy of my scan yet but am stressing out. The terminology in question is:

-thickening of the pleural wall on the right side 

-abdominal stranding between the liver and the kidney

I haven't ever even heard of abdominal stranding and don't know how or what it relates to. Can't seem to find much on a google search either.

They are both listed as incidental findings as the scan did not include the whole abdominal/pelvic area it was mainly a scan on the lungs.

Any thoughts would be greatly appreciated. I know that another test is the only definitive way to determine what's going on but we all spend enough time obsessing over our reports that I thought this would be worth a try.

Thanks,

Nancy

Login or register to post replies.

MoiraM's picture
Replies 15
Last reply 2/7/2016 - 9:17am

I went down the Ipi route for treatment of my Stage III melanoma. Good news is I am a responder and, six months later, the tumours in my lymph nodes have shrunk so that they can no longer be distinguished using a CT scan. (Bad news is that I have ended up with damage to my anterior pituitary gland that is probably permanent.)

My specialist has shown me a graph that appears to show that if I make it to three years then I am likely to make it to ten but she cannot answer my question, which is What proportion of 'Ipi responders' make it to the three year milestone without a reoccurence?

Has anyone got an answer to this question? Or any other relevant information (maybe like a link to a useful research paper).

Stage 3C Ipi/Yervoy responder with phobia of doctors/hospitals

Login or register to post replies.

JackieH's picture
Replies 3
Last reply 2/7/2016 - 2:11am
Replies by: jae p, mdoh, WithinMySkin

Every year on the anniversary of my first diagnosis I revisit this site where I used to scan all messages looking for posts that gave me hope. So I write this esp. for newbies  to remind people there are many of us who no longer visit this website.  My  daughter was 9 when I was diagnosed with my first melanoma (stage  2b) I was diagnosed w my second primary 2 yrs later. My daughter is now a young woman of 23. I hope my message might help give some comfort to others.    

Jackie

Login or register to post replies.

gcooperbl's picture
Replies 5
Last reply 2/3/2016 - 8:57pm

Hi all

 

just a bit of advice needed, my dad had a turn / dizzy spell / potential seizure he is on lower dose of steroids and has brain mets. Will the doctor slow down his immunotherapy? He got first cycle last week and not to today was fine. Due to get his second on the 11th feb.....anyone been through this? Any positive news for brain mets and pembro? 

 

G

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 6
Last reply 2/4/2016 - 4:45pm
Replies by: Anonymous, AllysonRuth, Janner, melj

I had a thin stage 1 melanoma removed with wide local excision and negative sentinel node biopsy 9 years ago.  Had a recent brown spot develop right along the margin of my scar- and its melanoma in situ.

I am 35 now, with three kids under four.  I am having a very hard time coping with the fear of metastatic disease and death.  I have to wait another week to meet with my dermatologist.  Anyone out there have a similar experience?

I am so confused how my tumor could come back as melanoma in situ, how it took so long to recur locally.  From speaking to the dermatologist on the phone, he thinks it may be a new primary that "just happened to develop along my scar", but I don't know if I can buy that.  He also said that, if it is a second primary, I am now at a 9 times risk for developing another.

I don't know if they can actually determine pathologically whether it's a recurrence or a new primary, or if they can somehow tell?  Because right now I'm petrified of the implications of a local recurrence (if it is still living in my skin, won't it eventually keep coming back until it metastasizes), and I'm also worried I'm at 9 times risk of another because it might be a new primary.

 

 

 

 

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 11
Last reply 2/2/2016 - 4:14am
Replies by: Scooby123, melj, gcooperbl

After reading posts for a few months and finding many helpful, I thought I should contribute, hence the post. I'm a Brit living in the UK, my first melanoma was in 1995. A year later, following a resection of lymph node mets in my groin I joined a trial of Cancervax at JWCI in Santa Monica. Although overall the trial was unsuccessful, it seemed to work for me. I was NED for 18 years before presenting in December 2014 with two new primaries and a local recurrence on my flank. During 2015 I had 7 subcutaneous mets excised at the Royal Marsden Hospial in London. My CT scan earlier this month showed progression to lymph nodes in my neck and chest as well as a couple more subcutaneous mets. On January 20th I started on Keytruda. The first week I had negligible side effects but the last few days I've had headaches, fatigue and night sweats. All manageable. I had the option of Yervoy and Opdivo but chose Keytruda because I have a low tumour burden and normal ldh. The more severe side effects of ipi put me off the combo therapy but if I don't respond to Keytruda that could be the next step. 

Login or register to post replies.

Pages