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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john partrick michael murphy's picture
Replies 10
Last reply 7/19/2012 - 10:24pm

I know I am just a piker compared to many of you, but it is a grand feeling to make it this far. I still have one tumor in my lungs, but it has shrunk 92% in a year and a half. Also I am now a proud member of the 500 plus minutes in the MRI cigar tube for all the brain scans. No new mets have been found since I started treatment at MGH in Boston. If we keep our hope, we will keep our strength.

The history of the world is the battle between superstition and intelligence.

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Anonymous's picture
Anonymous
Replies 16
Last reply 7/18/2012 - 10:06pm

I've read a number of profiles where the original lesion was Stage IA, early, thin, all removed with surgery, no follow up was recommended or needed other than skin checks, etc... only to have metastasis some years later and bad outcomes.  I guess I just don't get the info that is very common to see that says if caught early, melanoma is highly curable, highly treatable, 97% survival, etc....  How can that be the case when example after example on just this forum of early Stage IA'ers who developed metastatic disease?  Should someone with a 0.2 or 0.3 mm lesion that was treated be demanding further treatment of some sort, knowing the possibilities?

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MeNDave's picture
Replies 22
Last reply 7/21/2012 - 11:40pm

It is with a broken heart that I tell you that Dave passed away last night at 6:29 pm with me and his two best friends by his side.  He was my best friend and the love of my life. I will miss him forever.

Because our local hospice does not do iv pain management, we were unable to bring him home with us.  But because of David - that will change.  Not only is Roswell pushing for a palliative care floor in the hospital (they pulled some strings to keep him there where he was comfortable and free of pain), but a whole communitly is working towards changing the hospice services offered to our small community.  I cannot think of a better legacy for David.

My caregiving duties will not stop - I will always continue to offer support to other cancer patients and their families.  He fought until the end, and I could not be more proud to have been his wife for the last 16 years.  Not once did he complain, or ask "why me".  He is the most amazing person I've ever met.

To all my fellow warriors out there ,  I ask this of you: do not let melanoma take a single day from you. 

Much love to all of you... and please, please, remember - DON'T EVER GIVE UP!!

 

Maria

Don't ever, EVER, give up!

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Nell's picture
Replies 6
Last reply 7/19/2012 - 6:33pm
Replies by: Nell, Ali, Anonymous

I have heard that local reoccurances at the primary site are common....but do they worsen the prognosis as far as metastasis to organs go? My Dr. did not change me from stage 3, but I am wondering if there may be more liklihood of further spreading because of these local reoccurances. Almost afraid to ask...don't want to borrow trouble, but thought someone out there might have experience ....

One voice can make a song; one life can change the world.

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Replies by: Ali, awillett1991, LynnLuc

Wayne and I just returned from his check up appointment.   Only did lab, - saw Derm and saw Dr. B. 

He said he had just returned from a huge conference (do not know if it was OSCO or not) - but they were discussing what to do with patients who had a complete response with ZEL, like Wayne did.  

He said only about 4% of people have this kind of response, but they now do not know really what to do with them.     They are working on a protocol about this very thing and how long a patient should keep taking the ZEL.

Also, they are talking about doing a trial for a PREVENTON drug foro Melanoma mets.   That's all we found out at his point.   In the meantime, Wayne will continue with the full meal deal (4 tabs twice a day) and visit MDA every month -

doing PETS - CATS - ETC. every other month.

This was very, very encouraging to us.    WOW.......a preventive med !!!.  How awesome would that be !  He was very in earnest as he talked to us wanting us to understand these things.....but that he must continue on as he is now -

and we want that very much  TAKING NO CHANCES !   :-)

Just thought I'd share this bit of info we got yesterday at MDA.

Nancy (devoted wife of 3X Warrior Wayne ) 

 

 

 

Matt. 15:13 "Every plant that my Heavenly Father hath not planted shall be pulled up by the roots". "With God all things are possible" ! Keep the FAITH !

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Watertree0513's picture
Replies 1
Last reply 7/17/2012 - 8:24pm
Replies by: Anonymous

Does anyone have any experience with Halo Moles and a growing halo?

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Nell's picture
Replies 5
Last reply 7/19/2012 - 11:20am
Replies by: Ali, lhaley, Nell, gabsound, LynnLuc

I had a primary melanoma removed from my chest 22 years ago...This January a lymph node appeared in the right axilla. It was removed along with 9 other benign lymph nodes...Since June ..in the last 7 weeks, I have had 3 separate melanoma nodules appear in the right axilla..the 3rd one to be removed tomorrow.  I have a specialist who says radiation is not effective, yet I have read articles saying something different...My scans show that at present the melanoma appears to be confined to the right axilla....What about radiation??  Anybody have a similar experience??

One voice can make a song; one life can change the world.

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HEYJC45's picture
Replies 5
Last reply 7/19/2012 - 11:02am

Just wanted to share my son's journey with Zelboraf which he started on 3/8.  Initial dose 4 pills twice a day.  He had every side effect listed (head to toe rash, joint pain, rash in throat, fatigue, swelling in hands & feet, etc., etc.). Then 7 weeks in, his liver studies went over the top, so doctor stopped Zelboraf for 2 1/2 weeks. Of course, all the side effects went away while off the Zelboraf.  Then since liver lab levels coming down, restarted him on 1/2 dose, 2 pills twice a day.  Side effects came back, but not quite as severe as at the beginning.  As his liver levels continued to come down to finally reach normal, his dose was increased to 3 pills for 4 weeks, and now back on full dose of 4 pills.  Each time the dose was increased, side effects increased for the first several days, but then leveled off.  Doctor has treated the joint pain with low dose prednisone because both Tylenol and NSAIDS effect the liver.  That has helped a lot.  He has had Mohs on 2 squamous cell carcinomas on is face and neck and several warts removed.  But his scans at 8 weeks showed a decrease in most mets and no increase in any.  Nearly all of the pain from the tumors is gone.  His energy level is good now and he has even gotten a bike to ride after the sun goes down.  We just all hope the Zelboraf continues to work.

This might give someone else an idea of how the side effects come and go with dosages and length of time.

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Sharon's picture
Replies 7
Last reply 11/20/2012 - 2:59pm
Replies by: Sharon, marysan, NYKaren, Jim M.

My husband was on and off steroids durning his Yeavoy treatments.  There is no sign of Melanoma PTL!  He has been seeing an Endrocrinlogist and is taking Hydrocortisone as he is not making his own steroids.  He has tried reducing the amount slowly for sometime now and he just drags and has a hard time eating which are the results of Adrenal fatigue. He is curently on 20mg had been on 7 for a while but just was not able to function on that. Wondering if others have had the same problem and at this point he may need to take them the rest of his life. If any of you can offer any help ideas or what else we could do I would really appreciate any help you can offer.  Thank you Sharon 

God, Family, Friends and Dogs ~ it's all that really matters!

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Replies by: Richard_K, Gene_S

Hi Everyone!!!

Been a long time since I've been on here. I will be NED for 5 yrs. next month!!!! Will also CELEBRATE my 45th birthday this week!!!! And will be a Grandma in December (I am sooo excited). Hope everyone is hanging in there and just always remember to KEEP YOUR SPIRITS UP!!!!

My question is.... Doc just told me my Cholesterol was HORRIBLE!! 297 total, good=77 and bad=220. Wants me to go on lipitor but I sure don't want it to lower my immune system. Any advice on this? I did some research and got conflicting info. on a few different sites.

 

Thanks!!!

SandyW

stage IIIB, NED 5 yrs!!!

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Tina D's picture
Replies 9
Last reply 8/27/2012 - 3:45am

Hi all, I have been on Zelboraf for over 2 months, have had six different areas removed by my dermatologist, one turned out to be a squamous cell. These areas are easy to recognize as new and unusual. My question is this. The moles on my back are forming halos, and I know that to be an immune response... but the moles on my extremitiies are all getting darker. The dermatologist noted this yesterday, and was not completely sure what it meant. I am the only pt on Z for both my dermatologist, and my oncologist. I did call the Z hotline, and they are wonderful, but it really still came down to them saying that the dermatologist is the one to examine and make a judgement about them. My question is this. Has anyone had darkening moles? If so, did the Dr give any explanation as to whether this may be a negative indicator? Or what it may mean, or what should be done abt them? Thanks so much for any responses to this. I read on here regularly & take encouragement from many of the posts. My first set of scans since starting Z will be on the 6th of August. I'd be lying if I said I have no scanxiety abt these upcoming scans. I am doing my best to keep my eyes on the Lord, and my hope in Him alone.He is faithful regardless of my circumstances, and in the midst of them.

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CherylL's picture
Replies 8
Last reply 7/18/2012 - 6:38pm

After our first cycle of IL-2 at UVA with the amazing Dr. Grosh  in May, we got the GREAT news that my husband's lung tumors are SHRINKING!

For those seeking some positive glimpses of treament options, we're here to share any details of our experience you might wish. :) 

Yes, the treatment is rough, but for us---WORKING

We'll return in September for cycle two...which will be far easier to embark upon knowing the efficacy.

Our thanks and love and health wishes for those sharing the fight. 

Cheryl Lage
Wife of Scott, Stage IV and currently mashing melanoma for GOOD.
 

 

 
 

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RobinS's picture
Replies 7
Last reply 7/17/2012 - 3:10pm

My mother is a very healthy 79 year old who was diagnosed with stage 3c Melanoma with 9 lymph nodes with tumors and extracapsular extension where cells had left the lymph node capsule.  She is going to start radiation and the recommended follow-up treatment is a 1-year schedule of interferon. At 79, my mother doesn't want to do the interferon given its limited success (10% have a delay in recurrence) and potential for a year of flu-like symptoms.  Does anyone have information about the treatment plan and side effects of vaccines that have been in clinical trials?  I appreciate any insight s you can share.  Thank you!

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LynnLuc's picture
Replies 2
Last reply 7/17/2012 - 9:46am

Latest message from his family:
"Steve Hock has officially left the building. No more pain, no more suffering, just peace. At 3:15pm In true Steve Hock fashion he made a grand exit, as he took his last earthly breaths to the sound of his favorite band Four Year Strong that began playing all by itself.................it is still playing. On behalf of Steve Hock & his entire family thank you........."

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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fcrawford's picture
Replies 4
Last reply 7/18/2012 - 6:32pm

Good Afternoon all, 

I joined this website hoping to find help, My mother was diagonsed with anal melanoma 2 1/2 yeas ago, she has been through chemotherapy and radiation twice now and currently on her third time of radiation and soon to start chemotherapy again. About 3 weeks ago she was told, she is now terminal after finding the cancer had spread even more to include her brain. I worry about her a lot, especially since I am so far away, I am in the Marine Corps. I write today trying to find places that might offer her financial aid. While she is battling to keep her life, all she can think about is the medical bills, morgages, and other bills piling up. I hate to see her worry about these things when there might not be much time left. since her being diagonsed her health insurance has increased by $1,100 a month. If anyone knows of foundations or charities that will help her, please let me know. thank you. 

 

Cpl. Crawford

USMC

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