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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travers's picture
Replies 5
Last reply 10/13/2011 - 8:15pm

This week I got the biopsy report. Both biopsies came out melanoma.  This was a shock to me. My dad has been battling basal cell for 40 years, so I assumed that would be my diagnosis also.  The good news is that it is in situ. I am trying to gather information.  My dermatoligist removed the moles but I am going in next week to a skin cancer surgeon for surgery.  I am not completely clear on what the surgery is except that it will be painful.What should I expect?  Both moles were on my inner thighs but on different legs.  Is that normal? To have 2 moles that are both melanoma?  Once I have had it will it come back?  Sorry for all the questions.

All things work together for good to those that love God

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Anonymous's picture
Replies 1
Last reply 10/13/2011 - 8:28pm
Replies by: jax2007gxp

Been thinking about  you. How did your appts go with the surgeon & Onc?

Mary

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Anonymous's picture
Replies 10
Last reply 10/20/2011 - 11:41am
Replies by: Anonymous, bcl, Harry in Fair Oaks

But there is a question as to what capacity.  ANyone heard anything?

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Jamie's picture
Replies 4
Last reply 10/14/2011 - 4:43pm
Replies by: Lisa13, jcraigdawson, Jamie, Anonymous

I have been NED 3 years. I had a PET/CT scan 1 month ago which revealed a "subcentimeter lung nodule" with SUV of 2.3....Doc said wait 3 months for further testing..Doc said not to stress it, so does that mean it's probably bening in nature or is there a bigger prbability it could be reaccurence(spelling)??? Any thoughts, or info is appreciated. Thanks ahead of time!    Jamie Stage 3a

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fdess056's picture
Replies 2
Last reply 10/13/2011 - 7:55pm

January 2010 showed by Doc a large freckle on my forehead.  He totally dismissed it.  8 months later it looked like  a mole & was dry and itchy.  Dermatologist diagnosed stage 3C Dec 2010.  Had surgery to remove mole, positive parotid gland and 16 lymph nodes (2 positive)   Had radiation and Interferon.  After 22 months cancer free, recent PET showed melanoma in left tibia near knee.  Had stereotactic radiation surgery 2 weeks ago.  Waiting for next PET in December and BRAF results.    Being treated at North Shore LIJ/Monter Cancer Center. 

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JerryfromFauq's picture
Replies 1
Last reply 10/12/2011 - 7:31pm
Replies by: jim Breitfeller
I'm me, not a statistic. Praying to not be one for years yet.

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Lisa13's picture
Replies 4
Last reply 10/13/2011 - 12:15am
Replies by: FormerCaregiver, momof2kids, Anonymous

My final ipi infusion is tomorrow and I just had bloodwork done today. My lymphocytes are up again from 225 to 258 which my Dr said is really good. Let's hope they keep going up once this final infusion is administered.  My LDH is up again but my Dr isn't concerned. It seems to go up, down, then up and down again, so if he's not worried, neither am I. Perhaps my lung nodules are inflammed from the attack of my immune system :)

I'm holding my almost 2 year old daughter while I'm typing this and pray that this drug will work for me for a long time.

Lisa

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

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Lauri England's picture
Replies 8
Last reply 10/12/2011 - 9:10pm

The nurse from my doctors office called me with the CT scan results after I have called 3 times.  I was told I have a 3 mm nodual on my lung and my liver is showing abnormalities.  She said the doctor would go over this with me in more detail at my appt on the 20th.  I am freaking out.  The nurse did say that the doctor wants me to be re scanned in 6 months.  6 Months!!!!! Yeah right.  I need to know what my choices are.  I just finished a year of Interferon a month ago.  I know they are not sure at this point if it is Melanoma but I know going into this my scans were clear with no abnormalties.  Any advice would be appreciated.  Thank you and God Bless!

Don't sweat the small stuff. There are bigger fish to fry!

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Strongdaughter's picture
Replies 6
Last reply 10/14/2011 - 8:46am

My father was diagnosed with Melanoma in 1999. At that time he had a Clark's 4 stage IIB melanoma, I think. A couple of his lymph nodes were removed at that time along with a large excision from his back. He was clear all the way through his 5 year check-up. 

Fast forward to this year. About 3 months ago he was having some lower back pain that he felt might have been kidney stones so he went to his urologist and was cleared of that. The pain then migrated to his mid back on the left hand side and he felt that he really needed to do something about it because it was beginning to be unbearable. At that time a chest x-ray was taken and the results showed a mass. From there the accelerator pedal has been pushed to the floor. He went through the PET scan to discover that he had lesions all over his body mostly concentrated to his bones.  He also has cells in one of the lymph nodes in his chest. He is in Stage IV now. He has had a complication that we were not expecting; he broke the top part of his pelvic bone while rotating to get out of the car about 1 1/2 weeks ago.  Radiation was started yesterday so we are hoping for good results and possibly some pain relief from this process. He is BRAF-. He is also slated to start Yervoy sometime this week or next. The oncologist that he has is wonderful and I would highly recommend him to anyone in the Charlotte, NC area. His name is Asim Amin.

So now that you have a little background on what is going on I am looking for information from other patients or family members that have a similar spread of cancer. Most of the people that I have read about have a soft tissue spread. Also, my interest in this whole process is about my future. I have had 20+ dysplastic nevi removed and I am concerned about the chances of Melanoma happening to me. I am here for any information that anyone is willing to provide because I have a firm belief that knowledge important in a time like this. I will be passing everything on to my father and mother.

Thank you!

Knowledge is power!

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lhaley's picture
Replies 23
Last reply 10/16/2011 - 9:41pm

I am still shocked but news was bad.  Here I was thinking I had first a sinus attack and then the dentist thought I had a fractured tooth. Was actually scheduled for a root canal.  The receptionist commented during the phone  that it's just not normal that she hears from these symptoms from a fractured tooth.  The dentist had called in 2 others because she was confused. Life would have been so easier.  The PET was planned the next morning for my regular scan.  Called the oncologist and at 6:30 that morning the tumor was discovered.  It's fairly large, 2.15cm and is deep in the area of language/written/ and reading.  By that afternoon I was already loosing my words.  Totally in denial I'm thinking it was anxiety and bloodpressure.  

I had to wait for the appointment and the receptionist kept appologizing that there was an emergency.  Found out later it was because the team had already met. The nuero surgeon was in DC and already sent pictures. The radiologist was already called, I saw him just didn't know at the time who he was. The team worked quickly that helped us to deal emotionally. 

All appointments have been completed. Talked to many different of the oncologists I've talked to in the past. Even my mel specialist that is now retired from Univ of Penn has contacted me and gave me his thoughts.  I'm ready and on Monday I'll be having SRS.  Plan B will be a crainectomy.  They are only doing this 2nd because it is deep.  The Surgeon isn't daunted by his ability but also knows damage in this area can definitely happen.  He already knows how he will actually enter the area if needed to limit as possible.

I've been told that a single met has %80 success.  The hope is that nothing else grows. 

I'm offering the Caring Bridge if you choose to follow my story.  I hate melanoma.

https://www.caringbridge.org/visit/lindahaley/settings

Linda

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Happe10's picture
Replies 2
Last reply 10/12/2011 - 12:35pm
Replies by: Janner, mombase

So, you all don't know me, but I feel as if I know all of you. I have been following the board daily for a year and 5 months, since just before my diagnosis. I have never posted as I did not feel as though I have the right to. My melanoma was in situ, it was removed and I thought I was done with it. Mentally, it is not over and I am still very afraid. I have hundreds of moles and needed to know that someone else could help me survive this. I decided to do follow up at MDA. I live North of Houston. I have gone to my follow ups, have some lovely new scars and some fabulous full body shots to keep a lose eye out. So far, so good. All have come back fine. I am in good hands but am still trying to get my head on straight. 

Most people would have thanked God and moved on. Somehow, I have been stuck here. I have moved on with my life but part of me has been here with all of you. I think it is part of my heart, maybe a piece of my soul or maybe my innocence. I am not sure. I know that I am not the same person I was before melanoma. Something happened to me after my diagnosis. I changed. I have felt so many emotions over the last year following your lives. I feel guilty that I was so lucky. I want to understand why I am here and you are there. Why not me? I have been searching for the answer for so long. I have been watching from a far, celebrating your joys and crying at your loses. I have followed research and studied clinical trials. I have PRAYED! 

I will continue to pray for you and your families. I will pray for strength and peace as you battle this horrible disease. I know in my heart that a cure is just around the corner. So now I am going to say thank you to Janner. I am leaving the board now after reading your last post. Why am I still here? I wanted to make sure you are all ok I guess. I have been waiting to witness a miracle. I have read a few and they give me such hope. I have wanted to find that answer, why NOT me. I am starting to realize that I won't find that answer here. 

What I did find is a group of the most courageous people on the planet. Thank you for sharing your lives with me. I am so grateful for your knowledge, honesty and love for each each other. Your courage is unending and your compassion is inspiring. I am a better person for having found this board. 

With gratitude,

Amanda

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j.m.l.'s picture
Replies 1
Last reply 10/11/2011 - 11:00pm
Replies by: kylez

Has anyone had a side effect from yervoy which led to intense buzzing in the ears and head? We cant seem to make the connection. This condition started 2 days after the second dose of IPI. Seems to be effecting left side of my head, ear, eye. Any ideas? thanks

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Melanoma pathways and targeted therapeutics. Several investigational agents designed to inhibit cell-autonomous melanoma pathways or augment antimelanoma immune mechanisms have entered clinical development. Proteins that have been targeted in melanoma clinical trials are indicated (red bars and bold arrow). The MAP kinase pathway (bottom left) has been targeted by RAF and MEK inhibitors, the PI3 kinase/ AKT pathway (bottom right) by TOR inhibitors, and the cell cycle by CDK inhibitors (bottom middle). Drugs inhibiting the Hsp90 chaperone protein may lead to degradation of several activated oncogenes (see text for details). The Bcl-2 antiapoptotic oncoprotein has been targeted by an antisense agent. Aside from IFN-α and IL-2, recent attempts to enhance melanoma immunotherapy include toll-like receptor agonists (top left) and CTLA-4 antibody blockade (top middle). These are predicted to generate a more effective T-cell-mediated immunotoxicity to melanoma cells. Strategies to interdict RTK such as c-kit may prove fruitful in the future against defined melanoma subtypes.

http://3.bp.blogspot.com/-mgzptUXRrP8/TpSYkZdrl2I/AAAAAAAAAiQ/eGP2po96Umk/s1600/Melanoma%2BPathways%2Band%2BTargeted%2BTherapeutics.jpg

 

Best regards,

Jimmy B

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Staci's picture
Replies 3
Last reply 11/9/2011 - 11:20am
Replies by: jdramsey, SMS

My dad recently discovered his Ocular Melanoma has spread to his liver. He does not know yet to what extent although I have read some of the medical records and it seems widespread throughout the liver. He is being seen next week at James Brown Cancer Center in Louisville, KY. by Dr. Miller. Has anyone seen this doctor or been to James Brown for treatment?

 

Thanks

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