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.

Expand/ Collapse Topic
 
Replies By
View Topic
Anonymous's picture
Replies 3
Last reply 8/26/2016 - 3:49am
Replies by: MoiraM, VeraB, Bubbles

Hi all! 

So suffering from all the side effects of immunotherapy I became curious to see if there are any alternative or maybe supplemental treatment options. There is so much literature on herbal medicine, dietary changes, etc. 

Just wanted to see if anybody has tried any holistic approaches? What lifestyle changes have you guys made since the diagnosis? Im trying to change my diet now and eat cleaner, maybe try to stay active with some yoga. Any suggestions? 

 

Thanks! 

Login or register to post replies.

Bubbles's picture
Replies 10
Last reply 8/25/2016 - 11:53pm

Hey Buddy,

Just wanted you to know I've been thinking about you (and I'm sure I'm not alone!!!)!  Sent you a message via email/MPIP...but clearly that doesn't work because I didn't even get the copy I sent myself.  Oh well....  Hope you and your holy head (that's what I call mine!!!) is healing well.  Hang in there!! love, c

PS ~ It may not seem like it just now....but there will come a day when you can have fun with this....though sometimes it will be at your own peril.  For instance, when I put an order incorrectly into the computer at work and nurses are confused, questioning, etc....I'm like, "Oops!  Sorry!  That's what happens when you have holes in your head!!!"  Of course, depending on the nurse, I may get a questioning look, a smirk, one who tries to knock another hole in it, or..."Oh, H#LL NO!!!! You're not playing that one, sister!!!"  Yeah, sympathy is not really one of the options!!!!  Love you!!!!  c

Login or register to post replies.

vickiaa0529's picture
Replies 17
Last reply 8/25/2016 - 11:52pm

Stage 4 

brain met at MDA

scared to death

Login or register to post replies.

slh4448's picture
Replies 10
Last reply 8/25/2016 - 11:43pm

Hey everyone,

i know that there are several people who have been or are currently on Yervoy 10mg. I was just curious if you could share anything about the side effects and how long side effects lasted? I have my first infusion tomorrow morning.

Thanks all,

Stacy


Login or register to post replies.

Anonymous's picture
Anonymous
Replies 8
Last reply 8/25/2016 - 10:50pm
Replies by: brewgirl68, Anonymous, Duffy's Mom, Polymath, btcedarr

My doctor told me on June 13/16 that I had melanoma. Stage 1b. I have since had it excised with 1.4cm and 2cm margins on the side and under, respectively. They say it's good news. Now my job is to be sun smart, do regular skin checks and try to figure out how to live my life with melanoma.

I am not a sun worshipper, but do love to be out enjoying activities like gardening, hiking, photography and kiteboarding. The latter is the easiest since I am completely covered in a full wetsuit, booties, gloves and helmet.

Since getting this diagnosis I have been afraid of the sun. I wake up in the morning and my first thought is "what can I wear that is safe and not too hot?"

I am weeks away from retiring. My husband has been patiently waiting for me to do so. We are all set to carry out our long prepared plans to travel in our RV through the southwestern US national parks and open areas. Now I am scared to do what we have worked so long to do. We are looking into having window film put on the RV windows to screen out UVA/UVB rays. Hopefull that will help and give me a safe shade place.

My question is could someone please, please tell me about clothes? I have spent more money on SPF clothing than on clothing in years.  Does everything have to be rated SPF 50+ to protect me? Plus, where can you buy SPF clothes besides on line?  Does anyone know if the Sunguard Laundry additive really works?

There must be a way to do this, but I don't feel at all confident about how. I don't want to make mistakes, due to my ignorance that will cost me my life. Any help will be deeply appreciated.

 

Login or register to post replies.

sadlerla's picture
Replies 5
Last reply 8/25/2016 - 10:20pm

I was recently diagnosed with melanoma, 1.03mm no ulceration, Clark level 4. Dr scheduled me for a wide excision and lymph node biopsy. I haven't had so much as a cold for well over 2 years and now this. Lymph nodes are not swollen. If this has spread would I necessarily have not felt good since it would be in my lymphatic system? Is this early stages? Any advice or words to calm my nerves are appreciated.

Login or register to post replies.

jvictoria's picture
Replies 2
Last reply 8/25/2016 - 6:33pm
Replies by: vickiaa0529, Bubbles

Hi everyone.. well, I've been pretty down the last couple of months... had to be taken off the ipi/nivo trial due to side effects and a recurrence in a lymph node in my arm. Then came the news of nodules that grew in my lungs and failed lung biopsy to determine if it was metastatic.

Had full set of scans recently, CT, PET, MRI and was going to the surgeon for a chat about VAT to have the nodules removed. I'm fully thinking they have doubled or tripled since my last scan. In he comes and says, I won't be able to operate on you... you're nodules have shruken down to pre-treatment size and some are just specs now. The emotions, feeling and gratification are indescriable.

I keep on pinching myself... I feel like I'm in a dream.

It's not a cure, I still have to have scans every 3 months..., I'm having hormone issues (Pit/Thyroid). But, I lived another day... and I am thankful to all.

Thanks to all you that have followed and helped along the way. I'm not leaving. But, will keep posting and helping others as I can.

 

Juan

Login or register to post replies.

landlover's picture
Replies 4
Last reply 8/25/2016 - 3:45pm

Soooo... back from the wonderful wedding of my daughter and back to dealing with M.  

I had a CT at the beginning of August which showed my previous 2 lung nodules had grown and I have a new one.  There were two present on my first CT scan in April prior to my CLND left neck.  I had been all ready to enroll in a clinical trial as stage 3C (pembro vs hi dose interferon or ipi) but due to the changes in the lung nodules I am now ineligible. 

My oncologist confered with the interventional radiologist and the IR doctor said that they could not safely do a needle biopsy because of the small size  (largest is 8mm) and location near to my diaphragm.  They want to wait 2 more months and re-CT and go from there, even though they agree this is most likely metastisis.

I have trouble accepting this plan.  I have asked about a VATs but they declined stating the invasive nature, also I asked why not just start treatment and assume this is melanoma but they will not do it without proof via biopsy.  So this puts me in the uncomfortable position of being probably stage 4 but not being able to get treatment and not being able to do a stage 3 clinical trial.

Just wondering if others have gone down this road and how it turned out for you?  I am tempted to "insist" on VATs but am not sure that they will do it even if I do.  

Thanks and wishing the best for all-

Peggy

Stage 3C, primary on neck, neck dissection May 2016.

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 2
Last reply 8/25/2016 - 3:33pm
Replies by: jvictoria, Polymath

I had a thin melanoma removed in 2011, stage 1A, clear margins and follow ups with dermatologist. It came back earlier this year in my lymph node in the arm. Had SLND and 1 out of 7 lymph nodes were positive, but the 1 lymph node they are pretty sure were multiple lymph nodes matted together. I also had extracapsular extension. I am totally confused as I have two different Oncologist,  the hospital (a research hospital) where I have gotten my initial treatment and surgery and then my local oncologist for follow up. The hospital options given after surgery are s Clinical Trial, Interferon, or watch and wai, with no radiation. The hospital I went with for surgery did not offer Yervoy, as they feel the risk does not outweigh the results. My local Oncologist, is recommending Yervoy, but they wll only adminiser it at the 10mg dose, and  he is strongly recommending radiation. I traveled back to the hospital for a follow up from the surgery and advised of the local oncologist recommendation of radiation and he responded that it was my decision but in his opinion is not necessary due to it only lessens the chance of local recurrence in that one area and if it did come back there, they could again remove with surgery. He feels the complications with my arm from radiation may outweigh the results.

 I don't understand how every Dr. can have different opinions on treatments..

Any advice?

Login or register to post replies.

stevecathy's picture
Replies 2
Last reply 8/25/2016 - 2:08pm
Replies by: stevecathy, Andrew1725

I am looking for thoughts?? Short version of my husbands journey. Diagnosis July 2015 , 3a . Originated on 4tg toe which was amputated. Lymph node disection 4 nodes positive 1mm or microscopic. Completed 4 infusions of yerovoy. Right after completing 4th dose , had 2 Mets in transit on thigh. So then ctca started mek/taf combo. He is still on mekinist and taflinar half dose since January. So far had 2mm and 5mm in lung , 5 mm gone in March 2mm still there June. Now last week's scan 2mm still same and reading states likely scar. With this we are over joyed with relief. Dr. Still want to continue combo. My mind wonders if he was responder to yerovoy as I read many have Mets in transit. So I have to wonder did ctca give enough time and is combo over kill. OK, this is not short , but my mind is always on overdrive. Just looking for thoughts. Thanks everyone

Cathy Jewell

Login or register to post replies.

...so says a recent study.  I know sentinel lymph node dissection (SLND) is a hot topic and difficult decision for those of you recently diagnosed.  I put up a post today that includes the abstract of this recent study, links to prior posts re the odds of having a positive sentinel node as well as another that addresses the murky recommendations for and against CLND (complete lymph node dissection).  SLND is done with the needed wide excision, while the CLND is done later IF that is what you decide to do and is a seperate, different,  procedure.

So if any of that interests you, here's the link:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/08/sentinel-lymph-node-disection-important.html

Wishing you all my best.  celeste

Login or register to post replies.

ecc26's picture
Replies 20
Last reply 8/25/2016 - 12:07pm

got back from the oncologist this morning and he confirmed my suspicions that the Ipi/pd-1 combo is not working. now what? there was talk about chemo and hospice and we set another apt for Wed so I could have time to make a decision. I've just finished looking the cliicaltrials.gov listiing and don't see anything for me.

I need help and any suggestions are welcome

-Eva

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 3
Last reply 8/25/2016 - 10:26am
Replies by: Anonymous, SABKLYN

Hoping for some insight.  My husband just had his yearly skin cancer check and the dermatologist noticed a new faded circle with a red rash in the center on his mid back.  She is thinking either skin irritation or basal cell.  She recommended waiting 4 weeks to check again and if it does not improve will do a shave biopsy.  

Is waiting a month ok?  Are basal cells cancerous?  My husband has no history of skin cancer and a couple skin biposies over the past year have come back as mild to moderate atypica with clear margins.  Thanks for the help.

Login or register to post replies.

waynec's picture
Replies 3
Last reply 8/25/2016 - 10:11am

Hello all,

One thing that was frustrating to me early after my diagnosis was the lack of melanoma-specific support groups.  So my wife and I were trained by MRF recently and we are starting one in our town, Alexandria VA.

We intend to have both sharing and peer support, and also regular topical programs/presentations.  

Here's my question:  If you've attended a group where there was a program or presentation, what topics did you find valuable/inspirational/fun/useful?  

We've been working on a list, but I wanted to see what the community wisdom could contribute. 

Our list includes:  Physical health/fitness, eating right, mindfullness/meditation, spirituality, advances in detection and treatment, state of the immunotherapy universe, caring for the caregiver, advocacy, and others. 

What have you attended that really left an impression with you? 

Thanks! 

Wayne

 

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 2
Last reply 8/25/2016 - 7:15am
Replies by: Capt jack, Patrisa

For those that have gotten a response from Keytruda, how long did it take for shrinkage of tumors?  I have in transit tumors and can feel them under the skin.  The area around the tumors turns red at times so I am assuming it is some type of inflammation.  Have any of you experienced redness of the skin around subcutaneous in transit melanoma tumors?  I am not sure if this is from Keytruda and is a good sign that it might be working or if it is common and something that happens in the lmphatic system when fluid is blocked by tumors.  It does not appear that the tumor has shrunk any after 2 infusions.  Thank you for any responses. Take care everyone.

Login or register to post replies.

Pages