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
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.

 

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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

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...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

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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

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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.

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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

 

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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.

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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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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!

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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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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 )

 

 

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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 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.

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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

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Julie in SoCal's picture
Replies 6
Last reply 8/24/2016 - 11:45am

Dear Friends,

For the last year and a half or so, I've felt like I'm living with my toes over the edge of Stage 3c; one foot in and one foot out of stage 4.  I've had so many small possibly benign things pop up.  As of yesterday's scans, though I'm now both feet in stage 4 as a 13 x 19 mm hotspot was found in my left lung.  I also had another small intransit pop up.  So it seems Pembro is going the way of IPI, only working for so long and then slowly failing.

So what's the plan? The tumor is small, and doesn't seem to be rapidly growing so I have time to research and find a plan that I'm comfortable with. Also, surgery is an option.  The met is in a very resectable place and is not yet big.  Clinical trials are also an option. Rock Star doc has also given me 2 clinical trials to look at: one targeting NY-ESO-1 (ID-LV305-2013-1) and the other targeting JAC-1 (INCB39110-107).

My instincts (and past plan) has been to leave tumors where they are and attack them with something systematic.  My thinking was that once Mel has left the building and traveled all around my body via blood and lymph systems, only a systematic treatment will work.  And Surgery's always an option I can keep in my back pocket.  

So this is how it is.  Is anyone on the NY-ESO or JAC-1 trials?  Has anyone else failed IPI and PD-1 and joined a clinical trial? Which one did you do?  Looking for all advice and options.

I'm grateful for this community and for the support, knowledge and wisdom they share. Thanks, friends.

Shalom,

Julie

Stage 4  (TXN2cM1b)-- 2018 WLE, SNB, LND, HD-INF, GM-CSF, (intransits) 2013 IPI, (intransits) 2014 PEMBRO, (intransits and lung met) 2016 ???

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