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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Anonymous's picture
Anonymous
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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.

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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

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sadlerla's picture
Replies 3
Last reply 8/24/2016 - 11:04pm

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.

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Joycem's picture
Replies 2
Last reply 8/24/2016 - 11:07pm
Replies by: Joycem, Ed Williams

3 weeks after WLE and SNB for deep nodular melanoma on upper arm, (non pigmented, skin colored round bump, had it for years, undiagnosed)  I am feeling very lucky surprised and thankful that my lymph nodes were clear, but still nervous about what's next...

Youngest son starting senior year, Two 90+ family members with dementia who rely on me, 2 older kid$ in college make me hesitant to start any treatments that would make me unable to keep up with my responsibilities, or lose income by missing work (part time so no sick pay or vacation) . 

Appt. with melanoma specialist (Henry Koon, Cleveland UH) is next week. 

Not feeling interferon. Leaning toward watch and wait. I have always been an "if it ain't broke don't fix it" type, but that kinda didn't work out that well with regards to my bump.

https://clinicaltrials.gov/show/NCT02696356 looks interesting but so much I don't understand. Is it appropriate to ask specialist about this? Not even sure what questions I should ask. Concern that it is phase 1 and a Japanese company with only one other product in development. 

Blessings and thanks to all of you wonderful knowledge sharers and encouragers who post here. So helpful. Praying for you as well. 

Joyce

 

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landlover's picture
Replies 3
Last reply 8/24/2016 - 10:04pm
Replies by: Prd10, landlover, Kim K

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.

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Replies by: keepthefaith11

Hi all - I'm new here so forgive me if a question similar to this has been posed to the community before. When it comes to a mole that's been classified as Compound Melanocytic Nevus (Dysplatic - Mild), what is the best path on which to move forward?

For the past couple years, I've introduced annual body scans into my health checkups -- Although 25 years old, I've abused my skin with sun and tanning beds more than I care to admit. During my most recent body scan, my new derm did a topical removal of a mole on my upper back. My previous derm would do full excisions (2 lower back). I was initially put off when the new doc charged more for this removal even without the cost of pathology than the previous derm - so I considered not returning to her next year regardless.

However, I got a call stating the mole was found to be atypical with the above CMN diagnosis listed on the path report. When I showed up for the appointment, they let me know it'd be a hefty amount to down-pay for the procedure, followed by more upon testing...all of which, again, caused some discomfort. Even though they are in my insurance network, it just baffles me that it would cost so much.

All of that to say, I didn't go through with the removal. I plan to go back to my old derm next year (June-July), and am curious if it would be wise to wait until then to discuss the possibility of excising this spot...or is this something I should address now? Also, I'm curious if he'll even be able to find the location (assuming he can go by my own direction and presence of scar tissue).

Any advice on what to do would be appreciated!

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waynec's picture
Replies 2
Last reply 8/24/2016 - 7:11pm

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

 

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slh4448's picture
Replies 6
Last reply 8/24/2016 - 6:08pm

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


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Bubbles's picture
Replies 6
Last reply 8/24/2016 - 10:11pm
Replies by: SABKLYN, Ed Williams, Anonymous, keepthefaith11, Lee Parlier

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

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Anonymous's picture
Anonymous
Replies 2
Last reply 8/24/2016 - 10:13pm
Replies by: SABKLYN, Anonymous

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.

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Anonymous's picture
Replies 5
Last reply 8/24/2016 - 5:35pm

  Is it possible?! Sorry, i dont know how to link article. Saw it on sostrenews.com

Do not fear tomorrow, God is already there.

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Anonymous's picture
Anonymous
Replies 3
Last reply 8/23/2016 - 9:24pm
Replies by: Casitas1, VeraB

Hello all, 
Looking for some advice and support here. I have been undergoing immunotherapy treatment which has been decreased from a two drug therapy to a single drug therapy (Keytruda) but the side effects have been unbearable lately. I have been hospitalized with colitis about 2 months ago and then again with pancreatitis a few weeks ago. I am now home but check ups with the oncologist show a lipase level that is not decreasing. I have been taking corticosteroids at home as well as had an IV infusion today. In addition to my recent weight loss of 15 pounds, I have been extremely fatigued and find it difficult getting out of bed every morning. However, latest CT scans do show progress and benefits of the therapy. 
I am on a bland diet for the pancreatitis although I have had no appetite anyways.

Anybody else struggling with the adverse effects? Its becoming increasingly difficult fighting this battle and I'm looking for any advice or support I can get. 

Thank you! 
 

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Anonymous's picture
Anonymous
Replies 1
Last reply 8/23/2016 - 9:46pm
Replies by: sister of patient

I noticed a dark brown almost black spot on the sole of my foot. I mentioned it to my pediatrist (who i was seeing for plantar fasciatis) and he told me not to worry about it...that it was just dried up blood. Well, last week the plantar fasciatis was becoming unbearable so I made and appt. so see a new podiatrist as the old one has since retired and the first question that he asked me upon examining my feet was was i aware of the spot on my foot? I told him what the my old podiatrist had said and he looked at me and said that it was not dried up blood. He then asked when was my last physical and he told me to make an appt with my primary care physician as his opinion was that i needed to have a biopsy to make sure it wasn't skin cancer. I immediately made an appt with my primary care doctor who agreed with the podiatrist. She had her office schedule an appt with a dermatologist/Mohs surgeon. My appt is this Friday. My doctor said that they are going to access the affected area and then perform a biopsy at this visit. I'm so scared. I have no idea what to think. I honestly don't think that I've had enough time digest what is going on. I haven't told friends or family....just my spouse because i don't want to make something out of nothing but I don't know what to think.

 

 

 

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Ally1986's picture
Replies 3
Last reply 8/23/2016 - 10:25pm

Well, I finally decided to go to the doctor for a mole that I have had since I can remember but a couple of months ago. I noticed it looked odd but not terribly interesting. I put it out of my mind and realized it a month ago again. I think I had noticed it back in June and it is now August. Anyway it looked irrugular and atypical from the pics I have seen and showing three different colors but I think it's 5mm. So not very big. When I showed it to me doctor he said yes it looks strange and needs checked out. So I'm waiting for a derm. To call me back. Well a few months ago I had been having pain in my shoulder near the mole and they did an MRI on it and said I fractured my clavicle one of the hardest places to fracture near the ACJoint. My question is, could the wierd mole and fracture be related? They still haven given me a clear indictation in if it's a fracture. One doc says it is but another says it isnt. I just want it to stop hurting. Will keep you guys posted in what I find out. In the meantime I will try to stay calm. I have yet to inform my husband on this and fear that it could be cancer until I get a biopsy.

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Well, I finally decided to go to the doctor for a mole that I have had since I can remember but a couple of months ago. I noticed it looked odd but not terribly interesting. I put it out of my mind and realized it a month ago again. I think I had noticed it back in June and it is now August. Anyway it looked irrugular and atypical from the pics I have seen and showing three different colors but I think it's 5mm. So not very big. When I showed it to me doctor he said yes it looks strange and needs checked out. So I'm waiting for a derm. To call me back. Well a few months ago I had been having pain in my shoulder near the mole and they did an MRI on it and said I fractured my clavicle one of the hardest places to fracture near the ACJoint. My question is, could the wierd mole and fracture be related? They still haven given me a clear indictation in if it's a fracture. One doc says it is but another says it isnt. I just want it to stop hurting. Will keep you guys posted in what I find out. In the meantime I will try to stay calm. I have yet to inform my husband on this and fear that it could be cancer until I get a biopsy.

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