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
sadlerla's picture
Replies 4
Last reply 8/25/2016 - 1:58am

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.

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

 

Login or register to post replies.

PFritz's picture
Replies 6
Last reply 8/24/2016 - 10:59pm

I am a 35 year old mother of two boys and this year my world was rocked my on Spring Break when I received the news that I had Melanoma. It has been a whirlwind since April. I had a T1b due to thickness of .55, Clark III, no ulceration, and mitotic 2 on my left shoulder. I had a melanoma in situ on my left ear. I had two wide excisions and now confused on next steps. Also I am a type 1 diabetic on an insulin pump and a huge family history of cancer (brother passed away from lymphoma and my dad had an ocular melanoma).

After my two wide excisions in May (and multiple other moles removed while under that weren't melanoma just suspicious that dr wanted removed) I've had a few other dermatology follow ups which was just the watch and wait attitude. I'm not that kind of person given history so we are down at MD Anderson right now. Pathology here was completed and they changed me from a mitotic rate of 2 to 3, is this concerning because it freaked me out?! The dr had said it could be because each pathology looks at different slices and also because their pathology is so good at finding outliers.  In my original treatment the dr said no to a Sentinel Node Biopsy due to risk of surgery (was already going to be a 3 hour surgery and being a diabetic for healing) and he didn't see the benefit of it. At MD Anderson the dr said basically he can't do anything for me unless I have the Sentinel Node Biopsy so what are the thoughts on doing this well after the wide excision, with being 1b? Are there pros, cons, thoughts? We are just very confused with some may differing views on treatment and whether this mole or that mole should go in a jar.

Thanks!

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 0

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.

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.

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.

Login or register to post replies.

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

Login or register to post replies.

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.

Login or register to post replies.

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

 

Login or register to post replies.

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


Login or register to post replies.

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!

Login or register to post replies.

Mikers's picture
Replies 5
Last reply 8/24/2016 - 5:39pm
Replies by: MoiraM, Mikers, debwray

Hello!

I wonder which steroids did you use and how did you tapper them if you have had an endocrinopaty namely pituitary inflammation?

Did you suspend ipi and for how long?

Did you use antibiotics? 

How long did it take to resolve syptoms?

Did you make lumber puncture for proper diagnoses?

Thank you!

My Doc is not an expert in the field and I want to help him )

 

 

Login or register to post replies.

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.

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 2
Last reply 8/24/2016 - 2:36pm
Replies by: Anonymous, WithinMySkin

Wondering if anyone has ever had this operation done?  I have stage 4 melanoma and the main area of concern is area on right upper side of maxillary.  Has also spread into sinus cavity.  In a study now, but dr said goal was to shrink tumor enough to have this operation done.  From what I have researched, this procedure is horrifying!!  Any input would be helpful.  Thanks.

Login or register to post replies.

dmturner's picture
Replies 10
Last reply 8/24/2016 - 12:44pm

Hi All:

I had posted a couple weeks ago that I was going to go the immunotherapy route instead of the CLND of the right groin.  Okay maybe on the fence on what to do.  Well no turning back now.  Did the first treatment on Wednesday.  Did not know it would be 4 hours long, I guess I assumed it was 2 hours.  So far no side effects.  Went to work the next day.  I work in retail and on my feet for 8 hours.  I still have swelling of my right foot/let, I am thinking from the SLNB.  That is one of the reason I did not want to the CLND cause I am prone to swelling.

My oncologist still brought up the CLND that morning.  He does understand my decision.  I told him if I was diagnosed a year ago then that would of course been the decision.

I will keep you all posted on side effects.  Next infusion is Sept. 7th.

Be Brave!

Donna, TX

Login or register to post replies.

Pages