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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DZnDef's picture
Replies 8
Last reply 1/25/2016 - 11:46am
Replies by: Linny, Linda N, DZnDef, Anonymous

On today's episode of The Quest for the Cures (episode 3) there was a long segment devoted to melanoma and Rigvir which was developed in Latvia and is approved in Latvia and Georgia by those countries' versions of the FDA for the treatment of melanoma.  The show interviewed several long-term survivors of melanoma who used Rigvir (which is a virus that replicates inside of cancer cells, destroying them while leaving healthy cells alone).  One survivor was too weak to get out of bed but her parents drove her from St. Petersburg, Russia to Riga Latvia for treatment and now she is fine.

I was thinking of Artie while wathcing this as he has tried so many things with limited success.

I'm just curious if anyone knows the status of this in the US.  Is anyone attempting to get it approved here?

Maggie - Stage IV (lung mets unknown primary) since July 2012

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Anonymous's picture
Anonymous
Replies 0
This website will notify you about current clinical trials.
 
This is the newest one.
 

 

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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wildpoppy's picture
Replies 5
Last reply 1/24/2016 - 2:16pm

Hello everyone..

I am newbie... Looking for some advice...

I have what I was told was a sebhorric keratosis under my breast... I saw my GP (UK)... who told me so, and a dermatoloigist who also told me the same.

I haven't given it another thought until recently (this was about 4 years ago)... until the area around the keratosis started itching...

Fast forward 3 weeks... The itching has subsided (though not completely gone)... but more alarmingly, there is a black patch appearing that wasn't there previously...

I have been searching for information as to whether sebhorric keratosis can can colour to black, but all I see is likely melanoma...

I have an appointment booked with a dermatologist in a week, but I am honestly shaking lwith fear with worry... My research is taking me down dark alleys on Google... with zero info on SK turning black/changing colour. Could it be that the doctors misdiagnosed what it was back then?

Can a sebhorric keratosis turn cancerous?

 

Any advice greatly appreciated, I'm not sleeping well.

Thanking you and wishing everyone wonderful healing

Kimmy

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SPier's picture
Replies 19
Last reply 1/24/2016 - 4:40am
Replies by: grahamtosh, Hstevens0072, Anonymous, Janner, Colleen66, POW, Swanee, SPier

Hi,

I was diagnosed and treated for superficial melanoma on my chest in 2012.  Doctor felt really good that it was all gone and have not had any reoccurrence in the area.  Since then I've gotten regular checkups and had a few things taken off that all came back benign. During my most recent vist, I had two moles "punched" out on my abdomen.  They came back atypical nevi.  I don't know the severity.  The doctor recommended given my melanoma diagnosis, that I should have these two areas treated with wider excisions.  Is that necessary given that I already know they are atypical nevi and are now gone?  I'm not sure how that could turn into melanoma if they are gone.  I do have a lot of moles, am fair skinned and freckled.  Any advice? Thanks.

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pookerpb's picture
Replies 4
Last reply 1/24/2016 - 1:27am

So after the last two scans were done yesterday exactly 2 weeks apart, it has become apparent that we need to do something drastic. Hubby is going to start the high dose IL-2 and Aflibercept combo trial in about 10 days if all tests come back next week ok for stress test, etc.

We have reached a crossroads where the disease progression is moving very fast and every day becomes more symtomatic and more painful.

After failing multiple trials with initial response, then progression, we are going to try another but its one we we have not been wanting to do EVER....well, the IL2 pat of it. Of course we know the statistics of the IL2 and how miserable the treatment can be. Please pray he can get some relief from it after, even if only for a short time until something new comes our way.

 

Krista

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Anonymous's picture
Anonymous
Replies 7
Last reply 1/23/2016 - 5:52pm

The short of it.. Husband is Stage IV, been on opdivo for almost 6 treatments of 12.  Constant stomach problems,  coughing and that is increasing in severity.  Now persistant pain under his ribs, and in the kidney areas.  He's lost over 20lbs since treatments have started.  He's cranky (justified) and lethargic.  Positive attitude is deminishing.  Personality and memory issues.  We had a PET scan and MRI on his brain done recently and will get results on this coming Tuesday. 

Draining watching him decline.  I need a break but afraid to leave his side for a minute.  I dont know what he needs from me to support him, sometimes I think Im more of a pain for him.  He doesnt leave his room much.

We're both going through our own hell in different ways with this. 

Im tired, scared, angry and would love to escape for a few days.  Not possible.

Thank you for letting me vent. 

R

 

Bin

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Stlmag's picture
Replies 7
Last reply 1/23/2016 - 4:13pm
Replies by: btcedarr, WithinMySkin, Anonymous, Stlmag, jamieth29

Timeline of my husband's melanoma journey:

10/13/15  Diagnosed with amelanotic melanoma, Stage 2B

10/14/15  CT chest lungs clear

10/19/15 Sentinel node & wide excision. Stage 3C

                 8 mm deep, BRAF, wild type, 4 of 5 axillary lymph nodes pos/removed

10/30/15 first oncology visit.."it has prob mets to your brain; you need to go to Vanderbilt"

11/09/15 MRI brain clear

11/12/15 PET scan clear

11/16/15 Vanderbilt visit; offerred Yervoy/Interferon trial

11/18/15 Made appt @ MD Anderson

11/20/15 2nd oncology visit. Yervoy approved 10/28/15 for Stage 3. Will begin that.

12/09/15 First Yervoy tx. Cancelled MDA appt

12/30/15 No more Yervoy due to Grade 3 derm reaction

01/19/16 Melanoma lesion reocurrs in surgical scar; biospsy

01/22/16 Biopsey results confirm- lesion is melanoma

 

 

 

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Happy_girl's picture
Replies 25
Last reply 1/23/2016 - 12:03pm

I know this topic has been brought up before.  I have tried to do a lot of research about it on my own. Is there a true correlation between pregnancy and melanoma.  I was diagnosed 6 weeks After giving birth to our first baby.  She will turn 1 in a month. ( hard to believe! :). We are not ready to have another one yet, but I have just been thinking about if it's a reality or not to even think of having another baby.  I went to mskcc for a 3rd opinion.  The dr I saw there, when having more children was brought. Up, said wait about 3 years.  My oncologist at the james center (Ohio state) said wait a year.  I'm just curious what your thoughts and opinions are.  I want to have another one, but also don't want to leave my daughter and husband.  I'm not sure what to think. Help! 

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Polymath's picture
Replies 8
Last reply 1/23/2016 - 11:18am

I have had a real tough case.  After initial treatment with Zelboraf, which worked temporarily, but delivered every single side-effect in the book, and some, it has been all downhill since.  Two years of following the standard of care with all the FDA approved drug therapies, and a clinical trial thrown in when FDA options were exhausted,  All unable to stop progression (perhaps some slowed it down) I finally was able to join the many on the Ipi/Nivo combo once it was FDA approved and am currently on it.  One of my issues is my tumors grow very large.  Internal, and subcutaneous typically grow to 8-9cm in size, and sub-q tumors this size can be painful, and definitely disfiguring as they bulge right clothing.  Last year I treated one large sub-q tumor on my back because it was causing so many problems and discomfort.  After a short,(5-times) but very powerful treatment regime, I remained frustrated at the slow pace of effectiveness.  It took about 10-weeks before I started to notice the tumor shrink, and after a couple more months the tumor was 90% smaller and no longer caused any problems.  Now while on immunotherapy I have had radiation again, on two large tumors near my clavicle, and may be benefiting from the so-called "triple threat" whereby radiation added to the Ipi/Nivo combo seems to have an added benefit to the effectiveness of the combo.

So finally my question.  Right now the one easiest to measure sub-q tumor which was radiation treated has begun to shrink rather rapidly.  While I am thrilled that perhaps drug therapy is finally working, there's this little gnawing voice in me that says maybe this rapid shrinkage is a result of the radiation, rather than a systemic response to the drugs.  My radiation oncologist says that this rapid shrinking which started immediately after radiation treatment is unlikely to be from the radiation.  Its more likely these tumors would respond the same way as prior treatment and take months, before shrinking noticeably.  Anyone been in my shoes and can offer their experiences?

Gary

 

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Anonymous's picture
Anonymous
Replies 7
Last reply 1/22/2016 - 9:20pm

What's the typical plan? If there is response to the braf and mek.. then what? I have read it stops working after a few months. Do doctors typically start immunotherapy when that happens?

Rebekah

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Anonymous's picture
Anonymous
Replies 2
Last reply 1/21/2016 - 10:47pm
Replies by: sayres, Janner

I had an mole that was close to melanoma removed through a wide excision. (I know nothing like what you guys are dealing with and I am so sorry for you!). Stitches out...for 2 weeks now. It itches. Is that normal??

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btcedarr's picture
Replies 5
Last reply 1/21/2016 - 10:20pm
Replies by: btcedarr, Anonymous, AshleyS

Hi. I am new to this site and have been following it awhile before posting. I was diagnosed on 10/13/15 with melanoma on my calf after a shave biopsy. The mole had been there my whole life and I saw no considerable changes, never itched or anything, but the dermatologist suggested it be biopsied during my annual exam. I had a WLE and SLNB on 10/22/15. I am healing well with after a bad cellulites at the SLNB incision and some stitch spitting at the WLE. I was staged T1b, at least .59mm, mitotic rate of 3, breslow III/IV. Nevoid and desmoplastic. WLE had clear margins and SLNB was negative. I now have checks every 3 months.

My question is in response to some posts of very similiar experiences and then finding it in the lymph nodes years later. If it wasn't there initially, is this usually another primary or it was missed initially. As you can tell, I am confused.....

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Queenbee's picture
Replies 4
Last reply 1/21/2016 - 4:48pm
Replies by: ldub, WithinMySkin, jennunicorn, Anonymous

I just had a wide excision surgery on upper arm, after receiving a melanoma diagnosis 5 days prior. What do you recommend for home care? I have 12 stitches total (some inside that will dissolve and some external that need removed). The nurse told me but I was to nervous to process and remember. Thanks!

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Anonymous's picture
Anonymous
Replies 7
Last reply 1/20/2016 - 5:22pm
Replies by: Scooby123, Gene_S, emagdnim83, Anonymous

My husband has been fighting Melanoma since 2011. It was diagnosed stage 3B but progressed to stage 4 in 2014. Overall he has been successful, killing 14 metastasis in 5 years. But we found out last week despite his most recent treatment the cancer spread to his lung. He's feeling very defeated and I understand why. I've been here with him through the entire journey. But lately he sleeps until 5 every day and has no interest in taking care of daily tasks. He's had a short fuse and flips out if I don't do something right or try to wake him up or suggest he does anything. We are waiting to see if anything more can be done, so I'm sure it has a lot to do with the stress. I just need to know I'm not alone in dealing with this. I hope the short fuse gets better and we don't have to have this anger become a new norm. It is difficult to bear!!!

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Christine.P's picture
Replies 6
Last reply 1/20/2016 - 11:43am

I am experiencing some very painful mouth sores covering the full inside of my mouth - gums, cheeks, tongue. My current doctor says all he can do is prescribe a lidocaine gel and that I should suck on ice. I asked about prescriptions (antibacterial, maybe?) like I had when I had thrush a couple of months ago and he said no. 

Has anyone has a prescription that worked or any other remedy that helped? The thought of having to not be able to eat or talk for the next 3 months (when my ipi/nivo infusions end) makes me cry. 

I am actually in the process of transferring my care to a better hospital with an actual melanoma specialist where I hope to be treated more compassionately (long story) and will also ask her at our first appointment on Friday. 

Thank you for your support and feedback. 

Christine P. 

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