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
zbudimir's picture
Replies 7
Last reply 11/29/2013 - 1:20am
Replies by: zbudimir, POW, Anonymous

Hi Everyone,

My dad was on Zelboraf for over a year.  In October this year, he started feeling sick and was in and out of the emergency room for about 3 weeks.  During these 3 weeks he was not taking Zelboraf or anything else to treat his melanoma.  His doctor (who didn't even come to see him) prescribed him antibiotics and said that the spot they saw on his liver in the emergency room is just a cyst and not to worry because his last scans showed no tumors.  The 3rd time he went to the emergency room in those 3 weeks they saw that the cancer has spread to his liver and pretty much all over his abdomen. 

On 11/5, he started on the Mekinist/Tafinlar Combo.  He responded in the matter of 2 days and we had high hopes.  But, yesterday his blood results were poor and the doctor said that he has only few weeks left and that there are no other options available for him.  She also said that clinically (by touch), he liver has shrunk in size.

The blood results are as follows:

 

                                                            11/5                11/15              11/27

Lactate Dehydrogenase                656                 365                 719

Alanine Aminotransferase             56                   41                   65

Alkaline Phosphatase                    540                 515                 641

Aspartate Aminotransferase         75                   51                   86

 

Has anyone else had the same experience?  Do you have any suggestions or ideas on other options/treatments?  Please help

Login or register to post replies.

Kathysue McDonald's picture
Replies 2
Last reply 11/29/2013 - 9:52pm

Hi,  I had a 6cm punch biopsy Monday.  I've had Melanoma for 10 years.  I've progressed to stage 4.  I go to MD Anderson every six month. (Dr. Pappa )  I've been in remission for two years now.  I've done the il2 and the have the frozen t cells ready to go.  My question is: If you have a second primary in a different part of your body.  Do you start over with the wle and the snb and the 6 month interfuron plus subsiquent 6 months of self shots.  Does it kick you out of your current protocol ? I know you can't give me definite answers but I would like to hear from others who have had 2nd primarys and what they ended up doing.

All my best !

Kathysue

Kathysue

Login or register to post replies.

Jasper's picture
Replies 1
Last reply 11/27/2013 - 10:53pm
Replies by: Janner

Can a 1mm melanoma have already metastasized to the lungs? I was just diagnosed yesterday, I don't know my stage, I don't know anything yet...I'm so worried!

Login or register to post replies.

Eileen L's picture
Replies 3
Last reply 12/5/2013 - 2:48am
Replies by: kylez, MaryD, POW

Hi, folks. I am an infrequent lurker/poster. Many of you have heard my story, but here is the brief summary.

Diagnosed Stage IV six years ago, on Sorefenib for 4.5 years, then a pesky tumor on my right adrenal gland grew to 6 cm. It was pressing on my inferior vena cava and was growing towards my renal arteries. NOT GOOD! Got into the Roche BRAF/MEK Phase Ib trial and have had great results. All tumors now non-reactive on PET scan (adrenal tumor had a SUV of 9 when we started) and the adrenal tumor down to 1.7cm. Only other remaining tumors are a few small lung nodules.

So, my oncologist, Dr. Daud at UCSF, and I decided to have that problematic little adrenal tumor taken out and he amazingly got the drug company ok to do so and leave me on trial. Scheduled for what we hope is laparoscopic surgery on Tuesday, and if all goes according to plan I will be back to baseline in one to two weeks. That way, when the BRAF/MEK combo stops working won't have that adrenal gland tumor to worry about.

That's my update. Hope everyone has a wonderful Thanksgiving/Chanukah!

With lots of love and gratitude,

Eileen from San Francisco!

 

 

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 7
Last reply 11/28/2013 - 6:41am
Replies by: Anonymous, Janner, POW

Hi-

 

Recently diagnosed Stage 4. It appears that I never had or they can't fina a primary. Intilayy had small lump thought to be cyst...well it's melanoma. Oncologist was slightly shocked when pet scan lit up for metastasis to lung. No lymph node involvement etc... Wants to go straight to systemic treatment. Questions...

 

Is prognosis worse becuse of perceived spread through blood? Doc says spread to brain is higher risk...that's it...that's why treatment wants to start ASAP.

 

Best treatments now? Yervoy? IL-2? Trials? I'm told my disease burden is low.

This melanoma is turning out to be tricky.

Let's work for better treatments....for a cure!!!!

Login or register to post replies.

KSabo's picture
Replies 4
Last reply 12/4/2013 - 5:05am
Replies by: ncdaniel, POW, Anonymous, Janner

I had a wide excision where the Radiologist found 2 SLN but the surgeon left the SLN that is closest to the site in me - went for a second opinion and found out that the oncologist agreed with me the other SLN needed to come out but that he was concerned with the mitosis level and he is recommending a year of Interferon - anyone out there ever heard of this?

Karen

Karen Sabo

It is a diagnosis not a death sentence

Tempe, AZ

Login or register to post replies.

Sherron's picture
Replies 13
Last reply 12/3/2013 - 9:12pm
Replies by: Cate, Maureen038, Swanee, POW, Sherron

Hi to everyone,

I do not post often anymore...But I still find myself here everyday.....Jim got his wings on Nov 30, 2010...nearly 3 years out.  I am still not doing real well.  It is hard to live alone.  Our anniversary would be Dec. 4th (45 years).  I am rather stuck...and can't seem to move on.  I live from day to day....work, sleep, to work, to sleep.  My daughter did get me a little dog this past April....She is small, and has helped a little.  Not sure how much longer I will work.  I probably need to go until 75 or so...I am 67 1/2...lost Jim at 64...I guess any age is too young to pass from this Beast.

Wishing you all the very best, and will be happy when I can quit coming to this site, and start living my life again.  I don't know how.  I don't know if anyone remembers me or not.

Take Care,

Sherron, wife to Jim (Forever & Always)

 

 

 

Login or register to post replies.

SPier's picture
Replies 19
Last reply 1/24/2016 - 4:40am
Replies by: grahamtosh, Hstevens0072, Anonymous, Janner, Colleen66, POW, Swanee, SPier

Hi,

I was diagnosed and treated for superficial melanoma on my chest in 2012.  Doctor felt really good that it was all gone and have not had any reoccurrence in the area.  Since then I've gotten regular checkups and had a few things taken off that all came back benign. During my most recent vist, I had two moles "punched" out on my abdomen.  They came back atypical nevi.  I don't know the severity.  The doctor recommended given my melanoma diagnosis, that I should have these two areas treated with wider excisions.  Is that necessary given that I already know they are atypical nevi and are now gone?  I'm not sure how that could turn into melanoma if they are gone.  I do have a lot of moles, am fair skinned and freckled.  Any advice? Thanks.

Login or register to post replies.

NYKaren's picture
Replies 3
Last reply 12/4/2013 - 9:42pm

Hi,

I am finishing a slow Decadron taper...was on 4 mg, went up to 8 mg. after MRI revealed new brain mets, .  After Gamma Knife, 3 weeks ago,  been tapering and now at 1 mg.  Supposed to go to 1/2 mg. for 5-7 days.

After work, I just go home, read in bed and go to sleep between 9-10:00.  Snooze alarm=best friend.

I've had leg pain throughout, but not like this.  Last couple of days, bi-lateral, tremendous pain from hip to toe.  Also, severe GERD, my fault for eating too late and not sleeping on enough pillows.

I'm already taking pain meds...now taking it all the time and even waking up during the night to take it. 

My question is:  If anyone has done a Steroid taper, will the leg pain stop when steroids stop?

I am weak, but not as weak as I was 2 years ago when stopping pred (colitis caused by Ipi)...went onto hydrocort. because of adrenal insufficiency and really don't remember--I just know that one flight of stairs is too much for me. 

Any help much appreciated.

Karen

Don't Stop Believing

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 4
Last reply 11/26/2013 - 6:52pm
Replies by: paul Lyons, POW, Janner, Mat

Hello,

Last week I had an MRI arthrogram of my hip because of intermittent mechanical pain in my posteriolateral hip for abot 3 months (it was not getting worse with time, I would say even improved). An orthopaedic doctor I saw did X-ray (which was normal) and ordered MRI with contrast to rule out the labral tear. Well, MRI showed extensive labral tear but it also revealed a bone lesion 3.0 x 2.8 x 3.3 cm in acetabulum of my ischum bone with fluid fluid layers,"likely aneurysmal bone cyst", 
Because of my melanoma history (Stage 1, 9 years post diagnosis), I am besides myself with worry. I made an appointment with an orthopaedic oncologist at MGH who deals with benign and malignant tumors and I assume they will do a biopsy of this lesion. How bad is bone biopsy? Did anyone have an MRI suggestive of cyst that later turned out to be a metastasis???

Login or register to post replies.

angelsd123's picture
Replies 1
Last reply 11/26/2013 - 10:03pm
Replies by: BrianP

Hello; I am new here. I have stage 4. currently at home after refusing general brain radiation over 2 years ago. They said i would live 3-4 months so i think they got it wrong. I have read about something Merk is doing with PD1 that might help me. Does anyone know best way to get into this trial series?

Thanks all!

Angel/

Login or register to post replies.

POW's picture
Replies 8
Last reply 12/9/2013 - 10:56am
Replies by: hdelancey23, Anonymous, casagrayson, Linny, POW, kpcollins31

Has anyone heard from DeniseK lately? Does she have a blog or a Facebook or anything?

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 1
Last reply 11/25/2013 - 9:31pm
Replies by: Bubbles
Safety, Efficacy, and Biomarkers of Nivolumab With Vaccine in Ipilimumab-Refractory or -Naive Melanoma

 

J. Clin. Oncol 2013 Oct 21;[EPub Ahead of Print], JS Weber, RR Kudchadkar, B Yu, D Gallenstein, CE Horak, HD Inzunza, X Zhao, AJ Martinez, W Wang, G Gibney, J Kroeger, C Eysmans, AA Sarnaik, YA Chen

Research · November 21, 2013
 
 
 

TAKE-HOME MESSAGE

Nivolumab Active in Ipilimumab-Refractory Advanced Melanoma

  • "In this 90-patient phase I study, nivolumab had a response rate of 25%, with median duration of response still not reached at 8 months. Response rate was identical, regardless of prior ipilimumab treatment. PDL-1 staining was associated with but was not necessary for response." - Richard Bambury, MD
  • The findings demonstrate clinical activity of nivolumab in patients with ipilimumab-refractory or -naïve metastatic melanoma, whether or not they received a multipeptide vaccine.

 
 
ABSTRACT

PURPOSE

Nivolumab, a human immunoglobulin G4-blocking antibody against the T-cell programmed death-1 checkpoint protein, has activity against metastatic melanoma. Its safety, clinical efficacy, and correlative biomarkers were assessed with or without a peptide vaccine in ipilimumab-refractory and -naive melanoma.

PATIENTS AND METHODS

In this phase I study, 90 patients with unresectable stage III or IV melanoma who were ipilimumab naive and had experienced progression after at least one prior therapy (cohorts 1 to 3, 34 patients) or experienced progression after prior ipilimumab (cohorts 4 to 6, 56 patients) received nivolumab at 1, 3, or 10 mg/kg every 2 weeks for 24 weeks, then every 12 weeks for up to 2 years, with or without a multipeptide vaccine.

RESULTS

Nivolumab with vaccine was well tolerated and safe at all doses. The RECIST 1.1 response rate for both ipilimumab-refractory and -naive patients was 25%. Median duration of response was not reached at a median of 8.1 months of follow-up. High pretreatment NY-ESO-1 and MART-1-specific CD8(+) T cells were associated with progression of disease. At week 12, increased peripheral-blood T regulatory cells and decreased antigen-specific T cells were associated with progression. PD-L1 tumor staining was associated with responses to nivolumab, but negative staining did not rule out a response. Patients who experienced progression after nivolumab could respond to ipilimumab.

CONCLUSION

In patients with ipilimumab-refractory or -naive melanoma, nivolumab at 3 mg/kg with or without peptide vaccine was well tolerated and induced responses lasting up to 140 weeks. Responses to nivolumab in ipilimumab-refractory patients or to ipilimumab in nivolumab-refractory patients support combination or sequencing of nivolumab and ipilimumab.

Journal of Clinical Oncology
Safety, Efficacy, and Biomarkers of Nivolumab With Vaccine in Ipilimumab-Refractory or -Naive Melanoma
J. Clin. Oncol 2013 Oct 21;[EPub Ahead of Print], JS Weber, RR Kudchadkar, B Yu, D Gallenstein, CE Horak, HD Inzunza, X Zhao, AJ Martinez, W Wang, G Gibney, J Kroeger, C Eysmans, AA Sarnaik, YA Chen

 

Login or register to post replies.

Julie in SoCal's picture
Replies 4
Last reply 11/27/2013 - 2:16am
Replies by: Julie in SoCal, Janner, Anonymous, POW

G'day friends!

Here's the situation: I have 3 possible intransit mets near my SNB scar.  I will be seeing a Dermotologist/dermopathologist next week in Bangkok (I'm ab American, but I live in Northeastern Thailand).  My plan right now is to have the Dr biopsy (punch or WLE ) the lumps.  I would really like to know what these things are sooner, rather than later.

My questions are: Are there any reasons I should'nt I have the chunks tested here in Thailand (at the top hospital)? I know that labs can goof, lose samples and what nots. And I figure this can happen anywhere.    If I have it tested here, is it possible to have another dermopathologist test the same chunk? or will it be destroyed in the process? 

I'm asking this, because I'd rather be seen by my Mel Expert Dr. but I'm in Thailand and he is not.  Sigh.  I'm going to the US in late Jan (coincidently for my 5 year scans) and don't have the means to go now.  But at the same time, I want to do what is best. If the biopsy comes back Mel, I'll figure out how to get back home, but I don't want to go to the US early if it's not. Does this make sense?

Thank you again, Friends!

Blessings,

Julie

Stage 3c  (TXN2cM0)-- 2008 WLE, SNB, LND, HD-INF, GM-CSF, (intransits) 2013 IPI, (intransits) 2014 PEMBRO, (intransits resected in 2017)

Stage 3a 2017 NSCLunc Cancer VATs; Carboplatin & Pemextred;  radiation

Login or register to post replies.

Julie in SoCal's picture
Replies 6
Last reply 11/25/2013 - 3:30am
Replies by: Julie in SoCal, vivian, MattF, Anonymous, SABKLYN, POW

Hi Friends!

It's been awhile since I've posted.  Normally I post in the new year, after I've had my yearly scan.  For the last 4 years I've posted that everything has come back normal and we all do the happy dance.  

Today however, I'm writing to ask your advice.  

Here's the situration:  I'm currently living in Thailand.  I'm 5 years post surgery for a melanoma on my left hand. I had a WLE and then SNB which found one axilia  lymph node with microscopic melanoma.  I went on to have the rest of the alillia lymph nodes removed. : Stage 3a. From there I had a month of High Dose Interferon, and then a year of GM-CSF (14 days on, 14 days off).

Up until now, I've not had any bumps or lumps or funky things near any of my WLE or SNB scars, although I've had many "funky things" removed.  But they've always been atypical.  However, 4 weeks ago I noticed a small raised lump near my SNB scar under my elbow.  Then a few weeks later I noticed another small bb sized lump near the other one.  Now today I find I have another lump closer to my arm pit,  

None of the lumps are darkly pigmented or very large (under pencil eraser size).  However the first one, is asymetrical, raised and unevenly red and tan colored.  The other two are not colored at all, just raised.  And of course they are near my SNB scar (the SNB spot that was negative).

Ok now my questions: obviously I will have a Mel Dr look at these three bumpy things.  My question is how soon should I do this?  I'm in Thailand, not near a medical center with any kind of expertize in Mel.  However, I'm going back to the US, for medical checks and PET/CT scans in early Feb.  Should I wait?

What do intransits look like? If these things are intransits, how quickly should I get myself to my Mel Dr? How fast does Mel spread?  

Advice?

Thank you friends!

Blessings,

Julie.

Stage 3c  (TXN2cM0)-- 2008 WLE, SNB, LND, HD-INF, GM-CSF, (intransits) 2013 IPI, (intransits) 2014 PEMBRO, (intransits resected in 2017)

Stage 3a 2017 NSCLunc Cancer VATs; Carboplatin & Pemextred;  radiation

Login or register to post replies.

Pages