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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Angela C's picture
Replies 3
Last reply 9/23/2011 - 11:24pm

Hello.

I am 2 1/2 weeks out from my first dose of Yervoy. For the second time in a week now my cheeks have become very rosy and warm. My cheeks just feel hot like I just got done exercising, or something like that. I don't have a fever. Just wondering if this might be related to Yervoy. Has anyone else experienced this?

Be kind, for everyone is fighting a great battle. -Plato

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kness's picture
Replies 6
Last reply 9/26/2011 - 9:09am

On monday I was diagnosised with melanoma. I had a moke taken off of my chest. It came back as a clarks level 3 and 1.5 mm. Soooo.... I have surgery scheduled for this coming monday. All of this is new to me and I am not sure exaclty what it means. Does clarks level 3 mean stage 3? Does this mean it has spread to any other places... I just need to know what this means, what most likely will happen, what to expect - ANYTHING that can help ease my mind - because right now I am scared!

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For My Sister's picture
Replies 7
Last reply 9/23/2011 - 1:40pm

I did some searching & found that our dear Shari C passed away on July 13 in Chadron, Nebraska.  She was a Christmas day baby as well.  Such a beautiful spirit, maybe she was there at the gates of Heaven to meet my sister, Cheryl (May East) and Nic.  Also wanted to thank everyone for the kind and comforting comments regarding the loss of my sister.  You are all in my thoughts and prayers everyday.  Keep fighting the good fight, my friends. 

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jax2007gxp's picture
Replies 9
Last reply 9/27/2011 - 3:18pm

Hello all,

This past Tuesday I met with my surgeon regarding the surgery from a couple of weeks ago.  Based on the path results, I am Stage 3c. 3 positive nodes, 2 of which were matted.  Plus, the Cloquets node came back positive (after a negative result when frozen and tested while I was under in the operating room...the negative result caused him to skip taking out the deep nodes).  The Cloquets was positive for a 1mm spot in the middle of the node.  Of course, this worries me because the melanoma could have gotten to the deep nodes which remain in my body.  The doctor does not believe we need to go back in for the deep nodes because he believes it is unlikely the melanoma got past the Cloquets node since it is only 1mm.

I am being referred to the oncologist to begin treatment once I heal from surgery.  My concern is that the doctor told me that interferon is my only option because I am stage 3.  He told me that Yervoy and other options were for stage 4 patients.  Of course, I haven't heard this from the onc yet but I want to be prepared when I walk in the door.

Any feedback that may be helpful for my consult with the onc?

Many thanks,

Jacki

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lhaley's picture
Replies 8
Last reply 9/24/2011 - 9:26am

Nic's funeral is 10am Friday Sept 23rd in NSW as Jerry posted.  That is the same as 8pm, Eastern standard time Sept 22nd.  For those inclined note the time difference for your time zone and give her a thought, ring a bell or think of a memory. 

I'm sorry for the short notice, I mixed up the time difference.

Linda

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Anonymous's picture
Anonymous
Replies 2
Last reply 9/24/2011 - 9:35am
Replies by: Anonymous

I just found out that Dr. O'day will NOT be working at Angeles Clinic any longer.

Does anyone Know where Dr. O'day is practicing medicine??

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Anonymous's picture
Anonymous
Replies 8
Last reply 9/30/2011 - 6:58pm

My husband was diagnosed with Melanoma in May.  He had a swollen gland that the Doctors thought was an infection and after testing it was confirmed that it was cancer.  He had a radical neck dissection in June and the tumor was removed and he is now in Stage 3c and underdoing Interferon treatments.  So far everything has been going pretty good until two days ago when he noticed a bump on his neck near the surgery site.  He is going to see the oncologist tomorrow to have it checked out but I was wondering if anyone has experienced this?  I'm wondering if it could be an infection or if it is another tumor.

As many of you can relate, our life has been turned upside down.  He is 42, we've been married for 19 years and have two teenagers.  He is the love of my life and I worry about him so much.

Thank you

Be a fountain not a drain

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rbruce's picture
Replies 7
Last reply 9/24/2011 - 9:55pm
Replies by: JerryfromFauq, rbruce, jim Breitfeller, Anonymous

My UCSF Onc just provided the following link to a trial they have going.  I am not familiar with this at all.  I'm waiting for an Anti-PD1 trial they say is going to start in November and he suggests doing this one in the meantime. 

Any help would be appreciated.

http://clinicaltrials.gov/ct2/show/NCT00972686?term=gsk+2126458&rank=2

The drug is GSK 2126458 and it is a dual PI3Kinase and MTOR inhibitor given by mouth.  1 pill a day on 28 day cycle.

Thanks!

Robert

The circumstances of our lives have as much power as we choose to give them. David McNally

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AlanM's picture
Replies 1
Last reply 9/22/2011 - 10:17pm
Replies by: Jim M.

I am one week away from 3rd infusion of ipi and just had to start 20mg/day prednisone to control gastro issues. The nurse told me that it generally takes a few weeks for them to take affect and  to taper off the drug. Will being on the steroid cause me to miss my next infusion?  I have had shrinkage in the brain met that I have and I want to keep that moving forward!

Alan

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Anonymous's picture
Anonymous
Replies 1
Last reply 9/22/2011 - 3:24pm
Replies by: Harry in Fair Oaks

Hi,

 

I am a newbie and need your help. I just turned Stage 4 and my doctor is recommending GSK Braf/MEK combo trial. I have have subq on leg, chest and mets on both lungs.

I sincerely would appreciate any feedback / experience with the BRAF & Mek combination drug.

I am very interested in knowing in the following:

1. how long it took to see tumor shrinkage ?

2. how long has the combo drugs been working  OR Stopped working?

3. anyone get rid of ALL there tumors with this combo drug and remained NED??

4.  what side effects have you experienced

 

Thank you so much for taking the time to reply to my questions. I wish you all a status of NED.

Nancy

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Anonymous's picture
Anonymous
Replies 8
Last reply 9/26/2011 - 3:10pm
Replies by: MARTERWAG, MariaH, Charlie S, Anonymous, mombase, momof2kids, Tim--MRF

Hi,

 

I would appreciate any information about qualifying for SSDI in California?

I have been stage 3c since 2009. As of September 19, 2011, I am now Stage 4 with mets on lung, suq in leg & chest.

Now that I am stage 4, do you automaticallly qualify for SSDI once my doctors complete the paperwork confirmating my diagnosis of Stage 4??

I had surgery on my leg, in June 2011, and have been recuperating. At the time ofthe surgery, I was stage 3, then on Sept 19, 2011, my scans indicated progession to stage 4.

What would the effective date be that I could qualify for SSDI? How long does it take to get SSDI??

Thank you for replying to my post.

Betty

 

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Jessmoon's picture
Replies 8
Last reply 9/23/2011 - 7:03am
Replies by: Anonymous, JoshF, Jessmoon, triciad, bblapril, Tim--MRF, eaca

My 35 year old husband was just diagnosed with metastatic melanoma with normal PET scan and sentinal node biopsy.  Yesterday we were presented with treatment options.  1.  Interferon or 2.  Enrolling in a study in which he would receive Interferon or Yervoy.  I am so concerned about the side effects of both medications.  Can anyone share their experiences with either medication? 

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Lisa13's picture
Replies 9
Last reply 9/22/2011 - 10:36am

Based on my bloodwork today, my LDH levels have gone from 245 to 187. This is good news, but my oncologist said it's a big jump and maybe perhaps it's nothing to get excited about as LD can be affected by many different events. I told him that I was going to believe it was the fact that I had tumours missing in my lungs. :)  Anyway, my Absolute Lymphocyte count when I first started was 1.85, now it's 2.28 which he said is a good trend.  I really don't know what these numbers means exactly, but the fact my ALC is higher and my LD is lower is good news. As my Dr. also pointed out, my bloodwork doesn't show any progression "it's beautiful". 

I havn't been having many symptoms, but my Dr. confirmed that symptoms doesn't necessarily mean it's not working and that many people have been responding without any symptoms whatsoever in his trial. They are seeing more itching than rashes and that's the only thing I've had so far.  We also discussed IL-2 after ipi (if this doesn't work) and he mentioned that the Dr. running the IL-2 program in Buffalo suggested these combo's of IL-2 after ipi were showing good results.

ipi #3 tomorrow and I'm going to keep hoping that I respond to this drug!

Lisa

Many impossible things have been accomplished for those who refuse to quit

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dearfoam's picture
Replies 6
Last reply 9/26/2011 - 4:53pm
Replies by: dearfoam, Anonymous, Charlie S

Went in to find out if dad's tumors tested positive so he could try Zelboraf, and after 3 weeks of waiting, they told us the tissue sample was insufficient. Doc thought there might be a chance we could get some Zelboraf and see if it does in fact have an effect, thereby confirming without another biopsy. I doubt Roche will do that for us since it would have to be through their patient assistance program.

So in the meantime dad will continue Temodar, which is only slightly effective - 2/ 20 or so tumors shranks some (brain), while 2 of 2o grew (on spleen and colon).

Dr thinks we will probably have to biopsy a brain tumor. All I think about is how the original biopsy in April landed him in the hospital for over a week witha collapsed lung. Ugh. Don't even want to know what can happen to the brain.

Wait, wait, wait - it's all I seem to do.

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natalieruth's picture
Replies 4
Last reply 9/23/2011 - 7:39am
Replies by: Anonymous, DebbieH, justlittleoleme

I was diagnosed with melanoma stage 3 in 2000.  At that time my MD Anderson doctor told me I would have to be monitored the rest of my life.  We have recently moved, and I have a new doctor (an internist who consulted oncologists on staff) who said the CT scan is no longer necessary and blood tests are all he plans on doing.  This scares me.  I have been cancer-free for 14 years.  Are any of you still being tested this long after the initial diagnosis?

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