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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vickiaa0529's picture
Replies 11
Last reply 10/21/2016 - 1:18am

Is anyone doing watch and wait after having brain mets 

is not logistically going to work to get to MD Anderson in the next few weeks as my husband is retiring on Friday and we don't won't have a home city to fly out of. Our condo in Seattle got sold and we're in hotels. I was thinking I had two months to get started but my Oncologist said no and said she would suggest close monitoring 

 

yikes

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WithinMySkin's picture
Replies 29
Last reply 10/24/2016 - 9:30am

Hello fellow fighters! I just got some great news that I wanted to share. Recent PET scan came back clear! I’m suddenly NED! Holy crappola I can’t even believe it. My second (and last) infusion of Ipi/Nivo was waaaay back on May 6th which started the cascade of side effects, steroids, weening, more side effects, and finally that wonderful 3 letter word.

Was the journey worth it?! Absolutely. I’m still dealing with some lymphedema in my leg from the CLND and some lingering endocrine/girlie issues but every day is a blessing. Every day I get to wake up and be grateful for the day ahead. Another day to enjoy the people I love. Another day to make a difference in other people’s lives. Another day to enjoy the life I’ve lived. Another day to dream about tomorrow.

I know everyone on this board has tough days and sometimes it's hard to see the good through all the bad. But there is always tomorrow, and we never know what tomorrow will bring! It may seem miniscule, but tomorrow is the first step in your future. Dream big!! So to help me celebrate my new status (woohoo!) and help your heart smile a little, I want everyone to list what another day means to you. What do you want tomorrow to bring?

OK so I'll start. Tomorrow is another day to...enjoy a glass of wine and a bubble bath. At the same time :)

Lauren

WithinMySkin

www.Withinmyskin.com

 

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Casitas1's picture
Replies 9
Last reply 10/22/2016 - 2:09pm

My Dr.(Rock Star Doc) and myself decided to stop Keytruda treatments today. I have been on since Jan. 2016. and have been NED. since July. We will have close follow ups and scans in Jan. I know there are some NED folks that are wondering when to say when in ending treatments. Well,I just jumped ship  and will keep you all posted on my journey post treatment! 

Best, Paul

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Anonymous's picture
Anonymous
Replies 14
Last reply 10/21/2016 - 12:58pm

Has anyone else done this?  My doc says it is way more dangerous than interferon and I shouldn't do it. But then another says it is better than interferon.  Why is it 3mg for stage 4?

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slh4448's picture
Replies 11
Last reply 10/29/2016 - 12:15pm

Hey all,

I know that many of you have read my posts about what is going on with me with side effects that I have been experiencing with ipi. To recap, I have had the first two infusions with the last one being on September 20th. For the better part of three + weeks after I experienced a lot of nausea and diarrhea.

Since September 30th, I have been on Prednisone 80mg daily, 30mg daily of a ppi. Last week I was in the hospital for two days getting a ct scan and blood work and both came back clear. I had a colonoscopy and it was determined that I have acute moderate colitis, more than likely due to ipi. For the last 10 days I have been taking Budesonide twice daily for the colitis and 10mg of Potassium because those levels were low.

After my release from the hospital I met with my doctor and he is recommending for me to not go further with anymore ipi treatments. Take a watch and see plan of action since I'm stage 3a.

I'm feeling much better, no nausea and no diarrhea and have a pretty good appetite.

So I have a follow up appointment with my doctor tomorrow, will do labs again and discuss everything.

So my thoughts are to discuss with my doctor about having my 3rd infusion maybe by the end of October, beginning of November while I'm still taking the Budesonide and the other meds that I am taking more from a proactive role instead of waiting reactively to any further side effects. I feel like I'm playing with fire with my case of colitis already, but I think that I would like to get through the loading doses. If all went well after the 3rd, have the 4th infusion around mid-December, then get a scan before the end of the year since my deductible will have been met.

I wonder what my dotor will say about my plan???? Any thoughts out there from you on my "possible" plan???

Thanks,

Stacy

 


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Aubreesmommy41's picture
Replies 9
Last reply 10/21/2016 - 3:29pm

My 8 month old got a mole on her knee at about 5 months old.. it's the only one she has but I don't know if I'm being paranoid or not because it scares me.. I was diagnosed with a stage 1a when she was 2 months old.. a mole on the backside of my left arm.. pet scan clear.. long story.. could someone look at this mole on my profile pic and let me know if it's suspicious.. it almost looks like a freckle but it's a tiny bit raised.. thanks Traci 

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Rkaiser's picture
Replies 5
Last reply 10/20/2016 - 12:37pm
Replies by: youngann, Rkaiser, jennunicorn, casagrayson, Anonymous

I recently took off my toenail polish and noticed a large brown spot on my right big toe and another only third toe on the left. I thought at first it must be bruises since they popped up so suddenly (the last time I took off my toenail polish was about 3 or 4 weeks ago) but after looking online I saw that hematomas can look a lot like melanomas under the nails.

I don't remember a specific traumatic event, but does the fact that they showed up so large within a month span and are on two different toes make it more likely a hematoma or melanoma? At what point in time if it's not healing do I consult a dermatologist? I just don't want to sit on this for months and possibly be missing something big. Does anyone have advice on this? Do melanomas under the toes generally show up gradually or can the really show up all of a sudden?

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JoshF's picture
Replies 12
Last reply 10/21/2016 - 11:37am

I know I haven't been on much lately but I always think about everyone. Been wondering if anyone has heard from Jaime or Lee. Think I'll send Jaimie an email and I believe Lee was looking at trial with Duke. I hope they're well.

Josh

Let's work for better treatments....for a cure!!!!

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SOLE's picture
Replies 21
Last reply 10/25/2016 - 1:12pm

Hi everyone

I have come across conflicting evidence concerning sweats and melanoma.

So let me ask you this:

Do you experience day sweats and/or night sweats?

Under immunotherapy or not?

Are those severe sweats like lymphoma cancer patients?

Have you been able to link your sweats to recurrence or met apparitions or else?

Thanks

I have had mild night sweats for the last two weeks and maybe a few times in september and I wonder if it is linked to the metabolic activity of melanoma

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Hello Everyone,

Thank you to everyone who posted with information and advice before .

We got the results about a week ago from our oncologist in that my mom was BRAF+.

We were told based on his medical opinion that she should be put on Dabrafenib + Trametinib (Pills) 

He knew at this time my mom was barely able to swallow water and could not swallow food. He was unsure weather we could use the feeding tube to administer the treatment but was going to try and find out.

We never heard back and made many calls. 

After reading about that here on the forum and as much research as possible about this treatment. We thought at the speed my mom tumors are growing especially the one behind her upper GI tract that is also pushing on her lung and heart. that this would help things shrink the fastest. 

So after a week of calls and getting this treatment finally ordered, after back and forth with a few pharmacist trying to figure out if we can use the feeding tube for this. We still have no answer other then a call saying that one of the pills says it cant be crushed.

We see our oncologist tomorrow. 

Here is the question. Anyone know any story or information on this treatment for a patient that can't swallow and has sever dysphagia.

Any help or info would be greatly appreciated. I feel like time is crucial and cant wait weeks more to start a treatment.

Thank you

Chris

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triciaches's picture
Replies 1
Last reply 10/18/2016 - 8:54pm
Replies by: Anonymous

First melanoma occurance (left shoulder) was in 2009, second was in September 2013.  I am currently classified as T2a NO MO.  I've had several lesions removed, but the most recent biopsy results have me confused.... if anyone can break these down for me, I'd appreciate it.  :)

First Results:

LEFT LOWER LEG-SHAVE BIOPSY:

Lentiginous junctional nevus with mild cytologic atypia, approximating lateral margin.  (See Narrative)

Narrative:  The biopsy specimen is significant for an asymmetric proliferation of mildly atypical appearing melanocytes along the dermal-epidermal junction.  These melanocytes are arranged in nests and also proliferate as single cells at the tips and sides of the rete ridges with associated papillary dermal fibroplasia.

Second Results:

LEFT UPPER LEG-SHAVE BIOPSY:

Junctional letiginous nevus with architectural disorder and focally moderate cytologic atypia present at one transverse margin.  (See Narrative)

Narrative:  There is letiginous downgrowth of the epidermis populated by single melanocytes and some melanocytic nests at the dermal-epidermal junction and in the dermis.  The melanocytes reside mainly at the sides and tips of the rete ridges with sparing of the suprapapillary plates.  Bridging of melanocytic nests is identified.   No confluence of melanocytes at the juction or pagetoid spread is noted.  The melanocytes exhibit focally moderate cytologic atypia with nuclear enlargement, hyperchromtc and agulated nuclei and prominent nucleoli.  Beneath the epidermis is a zone of concentric dermal fibroplasia.  No dermal component is identified.  The lesion is present at one transverse margin, and recurrence is possible.  

Help?
 

Tricia Chappell - Chesapeake, VA

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Surf Rower's picture
Replies 4
Last reply 10/18/2016 - 4:50pm

I am Stage 1A and preparing for a larger re-excision on my upper arm (with general anesthesia) since the first one didn't get it all. I am seeing a surgical oncologist now for the second one. He mentioned he was going to have the slide reviewed from the first excision, because it might not really be necessary. Preparing to call him back to check on this, I want to know what to ask.  The path report said Melan-A and CD68 were used but in some light googling I found (old) articles saying those were not the best markers, as they also show up in benign nevi. (My dermatologist was "surprised" that his biopsy came back melanoma, as the lesion was a pink/red small bump.) What do you think, and what should I be asking the oncologist, later today when he might call back.  Thank you!

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Anonymous's picture
Replies 14
Last reply 10/19/2016 - 1:27pm
Replies by: Bubbles, williez, Anonymous, Polymath, Ed Williams, Hukill, Patrisa

Hello folks,

Crossed the stage IV bridge from watchful waiting . No previous treatment other than surgery.

Liver mets diffuse confirmed by MRI after CT scan.

Have been given two treatment choices 

ipi 3mg for four doses every 3 weeks same time as nivo 1mg

then nivo 3mg every 2 weeks

OR pembrolizumab 2mg every 3 weeks.

LDH normal

Don't know pd1 expression but trying to find out as was in placebo wing of previous trial in that info is held on file- just not sure I can get to it.

IPI / nivo requires brain MRI and would probably start a week later than keytruda..

Have background eczema and arthritis that would probably flare with ipi..

Wrestling with the fact that neither may work but that ipi /nivo has best chance but worst side effects. Know I'm lucky to have the choices but really unsure. Do I flip a coin ?

Any advice or wise counsel very welcome-  Would be easier if ipi dose was lower-

Thanks to all

 

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Dear friends,

We are looking for one patient (advanced stage) and one caregiver in the Dallas, TX area who are interested in participating in a usability study for a pharmaceutical website. These are similar to focus groups, but they are one-on-one. The goal of the research is to make a more user-friendly website for patients and caregivers. Participants will be paid $100 immediately following their sesion. Sessions will take place in the Las Colinas area on November 8-10, but those interested participants who qualify will only need to attend one 75-minute session on one day. 

If you are interested in this opportunity, please send me an email at education@melanoma.org. Thank you for your help!

Best,

Shelby - MRF

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An ad popped up on my Facebook page today for a company known as Science 37. Naturally, I was very leary about giving them any of my personal contact info, and questioned the validity of their business at all. However, after doing some poking around the internet, this looks legitimate. I'm just curious if anyone has heard anything about this, and if it is something a patient or their caregivers would be comfortable doing? At this point, I am still rolling NED... fingers and toes crossed for brain and body scans in two weeks... so I'm not in a position to need this kind of "at home trial" option. Buuuuut, I can see both positive and potentially negative potential here........... 

https://www.pehub.com/2016/10/science-37-raises-31-mln/

 

http://cancersnewnormal.com

-- Niki

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