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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Just wanted to let you know I enjoyed meeting you on Sunday at the Atlanta Braves game area! I hope lots of people joined the MRF mailing list. Please let me know if there are any other events in the Atlanta area, and if you need a volunteer or two.

Cathy

Work hard, but play harder.

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Tina D's picture
Replies 7
Last reply 6/12/2013 - 11:41pm

Hi all,

It has been a while since I updated, I had to postpone my scans by 2 weeks due to my husband needing surgery. My PET shows no new areas, so for that we are incredibly grateful. But, the tumors that had initially begun to shrink fafter ipi, have begun growing again :-( . SO... My Dr is running a PD1 trial, I may get into that, or there may be other options. He is at ASCO & will be in touch tomorrow with all possible scenarios for treatment that he thinks appropriate at this point. This was incredibly disappointing, but, as always, my days belong to the Lord, and we continue to trust Him. I am down to 5 mg prednisone daily ( for the pituitary inflammation from ipi) and doing well on that. Big decisions to make over the next days, and I will try to post an update as we decide what to do next.

For now... One day at a time....

Tina D

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Tim--MRF's picture
Replies 4
Last reply 6/4/2013 - 7:20pm
Replies by: LibbyinVA, Anonymous, POW, Tina D

Another ASCO has wrapped up, and it was a great meeting for melanoma.  I have reported on some of the earlier findings, but want to say a word about another drug.

We have heard a lot about anti-PD1, and both Merck and BMS have drugs that are very promising.  Some companies, including Genentech, are working on anti PD-L-1.  This is the counterpart to PD-1.  T-cells express PD-1 and when tumor cells have PD-L-1 the two compounds connect.  This connection turns off the T-cells and prevents the immune system from attacking the tumor.  The PD-1 drugs shut down the receptor on the T-cell.  The PD-L-1 drugs shut down the receptor on the tumor.

PD-L-1 also interacts with a second control mechanism on T-cells called B,1,7.  By blocking PD-L-1 you turn off two different braking mechanisms in the T-cell.  Early studies in multiple tumors show positive responses and very few side effects.  Genentech is trying to decide what the next step is, and what cancers to use in subsequent trials.  Since 40% of melanomas have PD-L-1 let's hope they choose to pursue melanoma as an area for further study!

I also met with people from Caris, a company that does genetic profiling of tumors.  The idea is to determine what mutations are driving the tumor and come up with a treatment plan based on those mutations.  This is the promise of personalized medicine.  A lot remains to be done, but they have had some real wins with this approach.

Tim--MRF

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POW's picture
Replies 0

Marie just posted a very encouraging update about Dian on the "Off Topic" forum. Check it out!

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I am stage IV and close to NED on the GSK BRAF/MEK trial for 30 months. Had a spot on my chest and they biopsied it as melanoma, not just an atypical nevus. Now they will get out the ice cream scooper scapel and carve it out to check on its depth etc. I guess this combo doesn't stop a new growth but it sure kicks hell out of the tumors when they can get at them. Do I have this right?

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

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flvermonter's picture
Replies 6
Last reply 6/4/2013 - 7:20pm

Hi, I am on again and stressed but on the computer.  Don't want my husband to feel my stress on top of his own.   We go down to Tampa for Dr Zager removing the rest of the lymph nodes on his right side.  We were told 2 - 3 days in the hospital, with first night in icu.  Will have a drain for 4-6 weeks, and lung surgery on 6/20 with Dr Toloza at Moffit.  That surgery will result in about 5 days in the hospital.

 

One good thing is his stress test last week was ok and the cardiologist gave his permission for the surgeries.  I guess I am just worrying about what will be next.  He feels fine physically so no symptons.  I have questions about after the surgeries.  Will he had radiation for the melanoma and the lung cancer?  Both doctors mentioned probably radiation treatment.  Not sure how that works other than I hear 5 days a week for 6 weeks.

None of the doctors said any more about the spot on his liver and as I read the doctors notes (THorasic and Melanoma), it states how all the tumors are growing, since the pet scan.  I guess I am looking to relieve stress typing on the board here and it does help.  Bottom line, I am just scared.

Thanks, Mary

Hugs to all, patients and care givers.

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flvermonter's picture
Replies 3
Last reply 6/3/2013 - 11:22pm

Hi Again,

 

Back in April, my husband had a mole removed on his back and one on his abnomen.  We have been on a journey since the results of the mole (melanoma) on his back, and stage i lung cancer.  Today I received a call from his dermatoligist that removed the moles and referred us to Moffitt.  Turns out the other small mole was pre melanoma and has to be removed.  They had sent us to Moffitt for the larger one and didn't know if Moffitt was going to remove the small one.  Called Moffitt and was advised they would not, as it is not Melanoma (yet) and of course my husband has many other things to worry about.  So the Dermatoligist will remove the rest of the mole in a few weeks after my hsubands 2 surgeries.  One for the rest of the lymph nodes, and one for top lobe of his right lung.  Needless to say the call I received was like out of left field for me  Not sure why no one ever mentioned it before.  Have others heard of this?

Hugs to all, patients and care givers.

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chalknpens's picture
Replies 8
Last reply 4/11/2017 - 2:40am
Replies by: Anonymous, chalknpens, Linny, Janner, JerryfromFauq, POW

I have two primary sites of melanoma, both of which have been surgically treated with MOH surgery and sutures afterward. I am almost a year since the last biopsy was clear to the margins.

Two weeks ago, my husband and I walked 5 miles in a Walk for MS fundraising. The sides of my pinkie toes were tender at the end of the walk. My walking shoes are about a year old and have been comfortable enough until that walk. My big toes did not feel tender at all.

A week after the walk, I notice that both my large toes' nails were reddish-purple.

This week that color has darkened to black on the right toe, and deeper violet on the left. The coloration is evenly distributed over most of my nail on each large toe.

There is no pain, no fever, no chills, no pressure and no effect on my walking.

Do you think I ought to see a doctor? Which doctor? I have a dermatologist or melanoma (stage 1 superficial) and my husband has a podiatrist. And we both have our primary care physician.

Thoughts? I'll probably start with my pcp.

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Alanamaranto22's picture
Replies 15
Last reply 6/5/2013 - 2:15am

I apologize for constantly posting but I am really on the verge of a nervous breakdown. My main reason for this post is to find out if anyone on here has Ulcerated Polypoid Nodular Melanoma? I'm just in need of some sort of hope and moral support. I've been told that this, in addition to its characteristics is the worst of melanomas. Even if caught very early, the overall five year survival rate is less than 40%. The reason the majority of those with this type of melanoma don't survive very long after diagnosis is because they are unaware they have it and by the time they do decide they need to have it checked its well in the advanced stage. Of course I let mine go for more than two years thinking it was a normal wart. This melanoma is the most aggressive and I have to admit- I am very scared. I wasn't feeling well and was constantly fatigued and feeling ill before I decided to go to my doctors and have it checked. I just want to hear from someone with this type to give me a little hope- that there is hope (not that I would want anyone to have this or any form of cancer). I just need some serious support.

I am somewhat familiar with the medical field as I only had two semesters left in college to become a registered nurse. Unfortunately, I had a severe back injury that left me disabled. I have really researched and educated myself with melanoma, specifically Polypoid Nodular Melanoma with ulceration. I'm by no means an expert but I do want to educate myself as much as I can to be more proactive and involved in decision making with treatment of this. If anyone has this type or knows of someone with that type please reply. I really need some support and hope.

Thank you kindly for being such a supportive, positive and caring support group.

Alana

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1derdog's picture
Replies 9
Last reply 3/4/2014 - 6:12pm
Replies by: 1derdog, POW, Anonymous

My husband's SUV is currently 1.8 from 7.8 seven months ago. Does anyone know at what level it's considered not active? The tumor in the lung decreased by 24.5% as well. Just trying to hold on to whatever we can at this point. It's been 8 months of hoping & waiting since my husband's original doctor told him he had only one year to live.
Thanks
Wife & caregiver.

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Littlea41's picture
Replies 5
Last reply 6/3/2013 - 11:06am
Replies by: aldakota22, Janner, POW, Anonymous

Just curious if this has happened to anyone else. In March 2013 I have my WLE done on my melanoma spot- with the margins coming back clean. About 2 weeks ago I noticed these weird little bumps around the site- right next to the cut scar. At first I thought they may be little pimples from all the creams I have been using so I tried to pop one. Needless to say its not a pimple and now the little bump is super sore. I noticed the other little bump has a black center. I thought maybe the mole was coming back? I don't think that's what it is- just curious if this has happened to anyone else. My other biopsy spots do not have these little bumps.

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Be Not Afraid-God is with you always Stage IIIa

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Be Not Afraid-God is with you always Stage IIIa

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Be Not Afraid-God is with you always Stage IIIa

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Be Not Afraid-God is with you always Stage IIIa

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