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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elefk's picture
Replies 2
Last reply 2/2/2011 - 4:24pm
Replies by: LynnLuc, Fen

I'm stage 4 and my melanoma oncologist is recommending a clinical trial using sutent and avastin together. It blocks the formation of new blood vessels that feed the cancer. Does anyone have any experience with these drugs, eitther first or second hand?

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NicOz's picture
Replies 7
Last reply 2/2/2011 - 3:49pm
Replies by: MaryBZ, KatyWI, NicOz, cindyeh

Won't be around for a couple of days so just wanted to wish you all the best with your surgery. Will be thinking of you and sure you'll find it a piece of cake! Take care, don't over do it when you get home, and get lots of sleep to help the healing along.

Go get 'em, girl!!

Nic

xxx

Meh. Get on with it. Do not feed rabid monkeys. To fear is one thing. To let fear grab you by the tail and swing you around is another

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elefk's picture
Replies 2
Last reply 2/2/2011 - 2:05pm
Replies by: Lori C, King

I am stage 4 without ckit or braf mutations. What are your best ideas for treatment?

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Suzan AB's picture
Replies 2
Last reply 2/1/2011 - 7:42pm
Replies by: Suzan AB, LynnLuc

I received hard news today, mets/tumors in my right lung have grown and shown increased uptake.  I have one node in my left lung and nodes above and below my collar bone.  I have read that complete lung removal with treatment has a better survival rate than just getting clear margins (I have a paralyzed right hemi diaphragm with aceiation (misspelled?)  to the lower part of my lung with a large node sitting in there as well as a couple of nodes in the upper part of my right lung too.).  Seeing Dr. at UCSF on Thursday to discuss treatment.  Any suggestions will be greatly appreciated or stories about treatments that worked.

My best to all...I am kinda of numb right now...

Suzan AB

Presently...One Day At A Time.

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Terra's picture
Replies 3
Last reply 2/1/2011 - 7:26pm
Replies by: Anonymous, lhaley, Sharyn

Hi,

My husband, Derek, had lung surgery on Jan 17 for a lymph node in his right hilum, that had been there for 2.5 - 3 years.  The surgery went well, it was longer than expected because the node had grown into the outer lining of his trichea and windpipe therefore they had to take out his entire upper right lobe and part of his windpipe and trichea which they patched up with lining from his heart and then patched his heart up with a mesh.  He is recovering very well, this is his second lung surgery since progressing to stage 4 last spring with a nodule on his left lower lobe.  We are hoping he is now cancer free, waiting to see the onc and schedule a scan, we know there are suspicious spots in other places so we are hoping for a systemic treatment of some kind.  Several onc from the tumour board meetings in Toronto viewed his scans pre-surgery and all agreed there were too many questions about each spot to think any of the others were cancer - hoping they are right!

 

Thank you so much to Tina (& Tony) from Australia who graciously answered my questions about removing a right hilar node and who suggested we get another opinion from a cardiothoracic surgeon vs a lung surgeon - which we did and thankfully after 3 opinins we found someone who said yes it was resectable!  Thank you so much Tina!

 

Terra

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esposir2's picture
Replies 38
Last reply 2/1/2011 - 4:10pm

hi has anyone else been diagnosed  with mucousal melanoma?

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Anonymous's picture
Replies 1
Last reply 2/1/2011 - 2:50pm
Replies by: LynnLuc

Good day,

I am new & trying to learn.

Please tell me the difference between a cutaneous tumor vs sub cutaneous tumors.

Thank you for your help.

MiMi

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MRFUser2011's picture
Replies 10
Last reply 2/1/2011 - 10:54am

I had a CT scan on 1/10 that showed that the lung nodules I have (one in each lung) had grown.  I have been in contact with my previous surgeon and he is very confident he can remove each nodule via VATs.  Today I get the scan results from the PET he requested prior to any surgery.  I normally schedule my scan and result appointments as close together as possible but this time, I had to take first available and have been waiting since last Thursday for these results.  I have done okay with the stress and worry until I did that PET scan and now I am at a point of exhaustion from turning over the possible outcomes in my mind. Have any of you found a way to get around this awful stage from scan to results?  I do meditate and do deep breathing exercises, but it is as if I forget all my "tools" once I get into this place.  I would appreciate any suggestions anyone can offer.  

Shari

Game on. I am going to win! (The thought I had when I heard the doctor say I had melanoma.)

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SusanRice's picture
Replies 14
Last reply 2/1/2011 - 9:47am

Hi Everyone:

My is Susan and my Dad is currently battling Stage IV Melanoma. He's been on and off Dacarbazine for 1 year now, he has lesions in his lungs and liver, and after frequent scans, for the most part his lesions have stayed the same, shrunk slightly, or grown slightly. they have been hesitant to say treatment is working, but his disease has been stable for the last year which is all we can hope for (after reading so many sad stories within this forum).

So far, other than the side effects of the chemotherapy, he's had little to no sickness. The two things that seem to bother him the most are:

1)  pains in his stomach that seem to be diet related - scans have shown he has gallstones and he is going in to have an ERCP next week. He also had an infection late last year that Drs seemed to think was related to a gallstone blockage, causing his liver counts to go out of control. 

2)  the 'night sweats'. This is a new thing for him, and it's gotten really quite bad. it happens most nights, but not every night. I would say 4 out of 5 nights a week. Typically, he wakes up at 3-4am, his t-shirt and sheets are drenched.  

I am curious to know if any other patients also have the night sweats, is this a common thing with Melanoma? Or could it be a sign of something else? I have spent a lot of time on the web (good  and bad) and am pretty sure night sweats are caused by either an infection, cancer, or side effects to a certain type of Rx.

Can anyone offer me and my Dad some further insight into the world of night sweats?

Forever thankful!
Susan

PMA - Positive Mental Attitude Without that, it's too easy to feel defeated by Cancer. Cancer doesn't rule us. We rule it.

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We are conducting a global study on malignant Melanoma and seek those diagnosed Stage IIIC or IV to participate in one hour telephone interviews.

 

The purpose of our study is to understand the full impact of malignant Melanoma on patients, including the physical, emotional and social impacts.  

 

In the interview we will be talking with you about the journey you’ve been through since receiving your diagnosis, covering topics such as the impact of your condition on your daily life and your experiences with different treatments you may have received. The results will be used to assist in new product and treatments under development for this condition.

 

All information gained is reported anonymous and respects patient’s confidentiality rights.

 

Honorarium is $200 for participation.

 

Interviews may be scheduled between 8AM & 8PM February 16 through February 23.

 

Please respond with interest or questions to contacts below.

 

Kind Regards,

 

Jan Mallery-Groom RN

Clinical Research Support Services

+510-922-9710 / jmallery@comcast.net

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EricNJill's picture
Replies 11
Last reply 2/1/2011 - 6:50am

We are considering this trial for my husband Eric.  I was wondering what your experiences are with this drug.  Thank you!

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deirgey's picture
Replies 5
Last reply 2/1/2011 - 12:18am
Replies by: deirgey, Anonymous, LynnLuc, skysar, lhaley

Just wondering if anybody knows what MDA tests for with the pathology slides you send them for a second opinion?  My dad is stage IV and didn't have to send pathology slides to the other 2nd opinion he got at the Angeles Clinic.  Thanks in advance :)

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dian in spokane's picture
Replies 6
Last reply 1/31/2011 - 11:33pm

I don't know if Carole will make her way to the board today, but I know that there are many who remember her, since she was such a big help to so many people on this board for so long. Love and Light Carole!

Today she celebrates 10 yrs NED after surgical removal of Brain Mets.

I know that whe followed a holistic approach after her surgery, and has not had a recurrence of her melanoma in all of these years.

While she's not here posting, I also know there there are currently others on this board who are fighting brain mets, so maybe her story will encourage them

I know that she's always been an inspiraton to me!

dian

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Amy Busby's picture
Replies 12
Last reply 1/31/2011 - 11:31pm

Hi all!   Sorry I have not been around much lately.  I see so many (relatively) new people and hate that I haven't been able to share my vast storehouse of melanoma info, lol.  I have been around the block more than a few times.  Now I have failed ipi too.  I decided to first take steps to ease my HIGH pain level and strengthen my hip / femur on the left.  I had good success with the radiation on the right side, so that's what we're doing on the left now.  Lots of fatigue, so not online much lately.

Had a slot lined up for E7080 but who knows if it will be gone in 38 days?  I'd bet that it is.  So I'll be beating the bushes once again hoping a viable treatment option shakes out once I'm done w/ my 10 day course of radiation and passed a 28 day washout.  But first my priority is NOT breaking my hip.  So lots of sitting & people pushing me back & forth to the restroom in my wheelchair.  grrrrrrrr

Anyone with contact info on trial options send them to me at amybusby@sbcglobal.net.  I'm looking for targeted therapy but often brushed off b/c of prior BRAF study.experience & leptomeningial mets.  But my brain is stable for awhile.

Love and Encouragement to you all,

Amy

I continue to praise God in this storm, counting my blessings & enjoying my "bonus time!"

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LynnLuc's picture
Replies 2
Last reply 1/31/2011 - 11:10pm
Replies by: Lori C, Amy Busby

Yesterday while visiting my friend in the hospital as she had her surgery to remove a grapefruit mass of melanoma from her intestines...the nurse said somethings about care,insurance etc etc..

She said there have been  many times that during chemotherapy  insurance companies would drop their clients because of the expense of chemo so then they would have to stop treatment and wait until they get approved by Medicare or Medicaid...that really shocked me...the she also said a lot of insurances only allow you so many days as inpatient given a specific  treatment even if the patient hasn't recovered enough...she came right out and said that if the pateint is on Medicare and Medicaid that wouldn't happen to them...that totally was the opposite of what I thought...I thought Medicaid and Medicare would cover the least....

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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