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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mark1101's picture
Replies 7
Last reply 9/4/2013 - 12:00pm

I have been taking Prednisone more or less constantly since April at doses varying from 0 - 80 mg daily.  The purpose of this was to mitigate a rash I was getting as a side effect of my ipi.  I tapered down to zero 9 nine days ago as I had a maintenance IV of ipi 7 days ago and the two drugs don't work well together.  I have had no rash (or any other sude effect) since this last dose of ipi and have not resumed Prednisone.  The day after my treatment I began suffering from no appetite at all and being unbelieveably tired all of the time.  My Onc indicates this is most likely a backlash from the Prednisone and will take some time to settle down.  Has any one els had this particular experience with Prednisone?  How long did it take for these effects to subside for you?

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mclaus23's picture
Replies 5
Last reply 9/4/2013 - 1:49am

Hi again :)
My dad is wondering the ages of the people and size of tumors on Zelboraf, who it worked for and for how long?

Thanks in advance for your replies!
I'm trying to keep him with PMA!!!

M

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Replies by: JerryfromFauq, Anonymous

Dr Weber video discusses IPI, IL-2,-1, BRAF, PD-1 and , other investigational treatments.  From about the 10 to the 13 minute mark he goes into depth on IL-2. then IPI, and side effects.

www.youtube.com/watch?v=iza6-Ovkjxg

I'm me, not a statistic. Praying to not be one for years yet.

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Kate Australia's picture
Replies 6
Last reply 9/5/2013 - 7:13am
Replies by: Tina D, Kim K, vivian, JerryfromFauq, Erinmay22, Anonymous

Hi,

After nine months of regular three-month check ups, my mum's doctor told her she no longer requires these appointments. To me it seems too early to stop, but I may be being an overprotective daughter. Please tell me if I am.   

Here's her story.

Approximately 12 months ago she had a nodular melanoma removed from the middle of her back. The nodular melanoma was more than 4mm thick (it was so thick due to being misdiagnosed as a sebaceous wart when she first went to get it checked out) and not ulcerated. Very soon after the melanoma diagnosis came through she had the surrounding tissue also removed. There was talk at this time of also performing a sentinel lymph node biopsy. However, due to the location of the melanoma (right in the middle of her back) the hospital decided not to do this as they said it was too hard to accurately predict the nearest lymph node and it could be possible that a number of nodes in different locations could all light up and if that happened they would have to biposy them all which we were told can be dangerous. Instead, a CT scan was done which came back all clear.  The removed tissue was also tested and came back all clear.  

For the following six months she had hospital appointments every three months where they physically examined her lymph nodes and found nothing concerning.

At her nine month appointment after having the melanoma removed she had a PET scan. 

The PET scan showed seven very tiny spots on her liver. As the spots were very very small, the doctors didn't seem concerned but due to her history of melanoma, they wanted to perform an ultrasound on her liver one month later to make sure nothing had grown/changed. She had the ultrasound and the spots were still tiny.

The doctor then told mum she no longer needed to have scans or check ups any more. 

It's been approximately three months since the ultrasound.

Does this timing seem right? Should they still be monitoring those liver spots? Or should she be still getting regular check ups or scans? 

Thanks

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Anonymous's picture
Anonymous
Replies 3
Last reply 8/31/2013 - 1:27pm
Replies by: Anonymous, cltml, Bubbles

My husband (32 years old)  was diagnosed in 2011 with Stage 3C Melanoma.  Primary tumor in leg, traveled to two lymph nodes.   After radiation and interferon treatment, he was in NED status for a year.   Then a tumor showed up on top of his head in May of this year, it was completely removed with clean margins, and at the beginning of this month was considered in NED status.

Last week his leg that he originally had surgery on was inflamed more than normal, he is use to it being swollen due to having complete lymph node removal, but he stated experiencing increased numbness that by the end of the week was having difficulty walking.  MRI results came back, and he now has a solitary brain tumor.    He JUST had an MRI and PET Scan, how on earth can this stupid disease just come back so quickly?

I knew it was going to continue to be a long hard journey when he advanced to stage 4, but I thought we had some time before it came back.  We are meeting with surgeon next week, and hopefully he will have it removed before the end of the week. 

I’ve been driving myself crazy with Google Searching on Melanoma Brain Mets, and I’m not finding much of any information on others having a single brain met.  I see that the fewer, the better the prognosis, but the prognosis overall is still not good

Anyone have any information on this?  What should we expect from here?  We haven’t seen the doctor since prior to MRI,  they called us with results (less than 24 hours from scan)  to give results and change a steroid medication to hopefully help reduce  swelling to help him walk, right now he has very little muscle control of his leg, and continues to get worse.

Radiation? Chemo?  Clinical Trial? 

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Anonymous's picture
Anonymous
Replies 9
Last reply 9/2/2013 - 8:07am
Replies by: Tina D, Anonymous, Mat, JerryfromFauq, Janner

Hello,

For about a week, I have a pain in my posteriolateral part of the hip, which started suddenly one day and doesn't go away. It is not constantand and I feel it when walking or twisting my leg: it goes away with sitting or lying down. I am Stage 1B, 9 years post-diagnosis. I have a herniated disk but never had before such symptoms in the hip. Did someone experienced something similar?  I am scared and will appreciate any help. Thanks.

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nancyg's picture
Replies 8
Last reply 9/26/2015 - 10:21pm

My husband went to the dr today and the dr
Was very happy to see that his LDH levels were decreasing and said
That can mean less "tumor burden"... I am confused
Because originally we were told that the only way
we would know if my husband responded to IL-2
was through a CT scan (scheduled for Sept 6). Don't
get me wrong I will take any good news... But am cautious...
His dr is on vacation this is his partner... She is also a melanoma
specialist... Any thoughts on LDH?
Thank you in advance for any thoughts on this!!
Nancy

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Nigel Deacon's picture
Replies 4
Last reply 9/5/2013 - 7:07pm
Replies by: Tamils, POW, Zan

ocular melanoma June 2010, brachytherapy July 2010, mets to abdominal lymph nodes March 2012

ipilimumab Sept/Nov 2012, radiation March/Apr 2013, partial response by April 2012 but progressin in July.

I am about to retreat with ipilimumab, and hopefully stereotactiic radiation. How can I learn about best sequence, number of treatments, best practice in timing please?  Who are the experts?

 

Kathleen, if you are out there, could you please ask Dr. Flaherty for me?   Peace,Nigel

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Mat's picture
Replies 4
Last reply 9/2/2013 - 6:34pm

Hi Everyone,

I'm currently on BRAF inhibitors as an initial treatment for what was rapidly progressing Stage IV. My doctor has raised the possibility of toggling me between the BRAF drugs and ipi, that is before the BRAF drugs stop working. There is some published research on sequencing (one treatment following the other), but not toggling (moving back and forth between the two) as far as I can tell. Does anyone have any practical experience with this? Thanks.

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shelbug66's picture
Replies 3
Last reply 9/1/2013 - 11:04am

Brief history (I have completed a profile): Nodular melanoma in October of 2010, WLE and SNB (negative for spread).  Staged 1B.

In October of 2012, I was preparing for a complete hysterectomy, and because of the issues I was having, a CT scan was ordered, which did not show any abnormalities on my liver or lungs.  Forward to last week (August 2013), after having appendicitis symptoms, a CT scan was done which ruled out appendicits, however it found a small nodule on my liver and some type of scarring in the lower lobe of my right lung.  I did have pneumonia in that lung earlier this year, so I'm not getting to excited about that.  The liver nodule has me somewhat concerned.  It was small enough the radiologist was unable to 'characterize' it, but suggested it could be a cyst.  The doctor (who is a general practitioner) that I had to see doesn't seem concerned, but did suggest I should have another scan in 6 months to see if there are any changes.

I did meet with an oncologist after my melanoma diagnosis as a precaution, but only see my dermatologist on a regular basis now.  I'm wondering if I am being paranoid, or should I contact the oncologist about the results of this CT scan?

Shelley

Just keep swimming...Just keep swimming!!!!

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POW's picture
Replies 16
Last reply 8/31/2013 - 1:47pm
Replies by: JerryfromFauq, Anonymous, Bubbles, BrianP, becky15, nancyg, NYKaren, Cooper, POW

I want to thank JerryFromFauq for bringing this paper to our attention earlier today. I think this paper is so important that I decided to post the link again, this time using a headline in ALL CAPS!!

 The official title of the paper is mind-numbing, but the short name is "Melanoma Therapy Sequencing" which about says it all. You can read the abstract and get the full text for free at: http://www.nature.com/nrclinonc/journal/vaop/ncurrent/full/nrclinonc.2013.153.html

"Melanoma Therapy Sequencing" talks about which treatment option should be used first, second, third, etc when treating melanoma. Different treatments and different sequences of treatments are recommended depending on the patient's melanoma stage, health and mutation status. It was written by an expert panel of 30 nationally known melanoma oncologists (Kaufman, Hodi, Pavlik, Sosman, etc.) from 23 of the most prominent melanoma specialty clinics in the country including Rush, Dana Farber, Moffitt, John Wayne, etc. The expert panel only talks about treatments that are currently FDA approved (they do not recommend anti-PD1, for example) but they do often recommend clinical trials which, of course, would include anti-PD1.  

The paper is written in fairly plain English (as medical papers go) and it contains several very clear and understandable figures that summarize their recommendations. In line with our general recommendation that everyone is their own best healthcare advocate, I suggest that everyone struggling with making melanoma treatment decisions read this paper.

IMPORTANT-- It is important to note that your oncologist might not agree with these treatments or sequence of treatments for your particular case. If you read the paper, you will see that most of the time this expert panel was NOT UNANIMOUS about the recommendations. What they published was a majority opinion and they often balance that by describing why some of their colleagues disagreed. Sort of like the Supreme Court publishing both majority and minority opinions about important cases. I actually found it helpful to read both the pros and the cons. But be aware that if your doctor does not agree with these recommendations, he or she may be perfectly correct. Confusing for us, I know, but that's real life. 

 

Key words: immunotheray, IL-2, interferon, PEG, ipilimumab, vemurafenib, trametinib, dabrafenib, chemotherapy, brain mets, BRAF,  KIT, Yervoy, Zelboraf, Mekinist, clinical trials, sequence.

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nancyg's picture
Replies 16
Last reply 9/14/2013 - 5:03pm

I am new to this board, my husband was diagnosed
With Melanoma in Dec 2011 15.5mm/ ulcerated mole on his shoulder..
He had
Surgery to remove mole and margins- the cancer spread
To four sentinel nodes and one non sentinel node.. He had another
Surgery to remove the rest of the nodes under
The right arm- there was a tumor in one of the nodes.
Had three more surgeries ton remove other moles that looked
Suspicious -- all were Melanoma. No treatment was given... Interferon
was discussed but with the risk only being reduced by 1%, he did
Not do it. Jan of 2013 clear CT.... July 2013 pain on right
Side-- CT showed mass on lung and inflamed lymph nodes-biopsy confirmed
Metastatic Melanoma--- the only treatment he just finished
16 doses HD IL-2--goes for a Follow up CT Next week. When
I read this board I see that most people has lots of various treatments...
Is IL -2 enough??!
Sorry so long.
Thanks
nancy

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Roxy1453's picture
Replies 6
Last reply 9/1/2013 - 3:28pm

Well....!! It's NOT melanoma! I can't believe this last week! I have been through hell and now I'm back!

Results say, mild interstitial chronic inflammation and fibrosis. Increased intraalveolar macrophages. Whatever that means!?

I go back to "talk" to the Dr next Fri.

I am so happy! Thanks for all of your thoughts and prayers. I will never give up!

Nancy

"I can do all things through Christ who strengthens me." Philippians 4:13

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mclaus23's picture
Replies 3
Last reply 9/2/2013 - 9:01am
Replies by: Richard_K, Tina D, Anonymous

Here I am again! My dad has 2 new blisters on his chest...not sunrelated. Has a anyone experienced this? No rash accompanied by it.

Thanks for your input!!

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