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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jjk17's picture
Replies 9
Last reply 4/19/2018 - 12:09pm

Hey all!!

So I just took treatment #6 as of Friday the 13th! Feeling the same as usual. Fatigue probaly for the first 12 hours or so and then I have been expierencing headaches every 3rd or 4th day after and they come and go for the 2 weeks. We skipped a couple of weeks ago, to "make sure" it was the medication.(brain mri was clean) Doctor wants to start the double dose for 30 minutes in 2 weeks. To be honest, I am very apprehensive about that, just due to the fact of the headaches that I have been having...

Any one have any input of this....Anyone else taking this...?!?!

Thanks in advance,
Jill

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doxiemom's picture
Replies 11
Last reply 4/19/2018 - 11:25am

Hi everybody, you may have read my story...I was diagnosed last May with metastatic melanoma (first presented in my breasts). Started Keytruda and ended up with mixed results. Breast tumors disappeared, but melanoma surfaced in spinal fluid (LMD). Fast forward, I am back on targeted BRAF therapy. Fingers crossed I can tolerate it this time and it is effective (couldn’t tolerate it in the past-fevers/rashes). My mobility has become increasingly impaired (I now use a cane and walker), which makes me depressed. Anyway, I want to thank Celeste (Bubbles) for sharing so much valuable info and encouragement with this group and also wish everyone the best in this struggle with “the beast.” ~ Carrie (aka doxmomma)

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Anonymous's picture
Anonymous
Replies 4
Last reply 4/19/2018 - 8:48am
Replies by: SOLE, Kav7438, Anonymous, casagrayson

Hi

i am 44 years old. I  very active mole checker and have been doing monthly checks for the last 2 years for my moles. I have dysplastic mole on my back which hasn't changed in the last 2 years but today I was going through my wedding photos and realised that the mole wasn't there in 2009 (age 35) at all. So I've developed this s mole between then and 2014 - it's on photos from then.

 

in that time I had 2 children. I physically was ill when I came across the photo this morning  and I can't look at my children without crying. I'm beside myself. I will try and get in with the dr tomorrow to get a referral. 

 

Anyone with a similar ecperience? This mole hasn't scabbed, itched or bled ever. But it's a good size

im just beside myself 

 

thanks for reading 

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Replies by: BethPendley, Bubbles

Hello - My father is recently diagnosed with Stage 3 Melanoma. Shave biopsy of primary lesion on scalp and lymph biopsy malignant - path report received April 9. As of last Friday, Apr 13 PET Scan showed no additional spread. We have consultation scheduled at Moffitt with Dr Gonzalez Thursday April 26. 

Anyone who has been to Moffitt willing to share information regarding the time from consultation to surgery? Also, anyone have any experience with Dr Gonzalez?

We live in Alabama and UAB was unable to consult until April 30 and didn't have opening for surgery until late May. Local oncologist presented option of local general surgeon to remove primary lesion and ENT Specialty surgeon to do neck resection if we cannot get a surgery timely.

We are just trying to manage our expectations on what is reasonable for timing to schedule a surgery after Stage 3 melanoma consult at Moffitt. I know every case is different but would be great to hear other people's experiences. Also since we will be travelling for treatment we are trying to determine how long we should plan to be in Tampa for the consult visit.

Thanks for any input. God Bless.

Beth

Beth

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JW's picture
Replies 16
Last reply 4/18/2018 - 10:39pm

My husband was diagnosed with mucosal (anal) melanoma 4 weeks ago after a colorectal surgeon took out what was supposed to be a polyp but turned out to be 3 melanoma tumors.

He finally had a PET scan on Friday, and we will finally learn his stage at his oncologist appointment this week (though we know it is at least the worst level of stage 2, since there were 3 tumors and the largest was ulcerated and 11 mm deep).

We already have a second opinion visit scheduled with a melanoma specialist for next week, but I am wondering if we also should make an appointment at MD Anderson asap.  My husband is a teacher and wants to wait until June.  

I at first thought that was ridiculous, but as I've read been reading on this site and others, it looks like the treatment process is a bit slower than I would have expected, and many people pursue seveal opinions before starting treatment.

So, maybe it is not so unreasonable to wait to make the trip to MD Anderson when it is more convenient?  We also have an 8 year old daughter, and waiting until she is out of school would be easier in terms of child care, as well.

Is that stupid, though?  Should we hurry on over to MD Anderson as soon as we know the stage?  Will getting there 6 weeks sooner be likely to make a difference?

Oh, and by the way . . . when and how do you tell your 8-yr-old that her dad has cancer?

Thanks for any input from anyone!

JW

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jagstter's picture
Replies 5
Last reply 4/18/2018 - 9:19pm

Happy Sunday, everyone!

Well, I just got back from prostate surgery @ Mayo Phoenix, late last night. Phew! & soooo glad to finally be home. This past week has been about as difficult as any I've experienced, since my original melanoma diagnosis & surgeries. I must be getting old, LOL!

Anyway, the surgery was successfull & pathology reports clear margins ... yay! As long as I don't have any complications, I should be slowly recovering, over the next 2 months. Just in time for my next scheduled  scans @ MDA, in June ;-)

While @ Mayo, they did further ultrasound of my right kidney tumor & confirmed some intervalic growth since December's CT @ MDA. Now, just over 4 cm. Per Celeste's excellent suggestion, I queried about a renal cancer diagnosis versus a potential melanoma metastasis. The Oncologic Urologist said that renal melanoma metastases are very rare, the tumor doesn't appear to have the characteristics of a melanoma & further, my upcoming CT @ MDA may bring better confirmation. Nevertheless, he said it will have to come out. I asked about neoadjuvant therapy & he was dubious, saying he didn't think it applied in my case? Oh, well ... further evidence of the compartmentalization of cancer healthcare, I guess!

Oddly, the bigger question in my mind is, "How the heck am I going to get through kidney surgery?" Prostate surgery REALLY kicked my butt ... plus, doing it so far from home was physically & pschologically challenging. I'm glad I had the very best care @ Mayo but wonder what I'll be able to tolerate for a much more significant procedure.

I know it's easy to get ahead of things, so right now, I'm trying to just focus on recovery. 1 step @ a time, right? Me & my overactive brain! I'm so very grateful to you all for this forum & the opportunity to share ... I hope you all remain strong in the fight!

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               I need some advice as I have no experience with cancer...until now. My Dad had a lesion on his arm biopsied and the pathology report showed melanoma. Apparently it is not the primary lesion and they did another biospy of a lesion on his face and that came back with the same results. He had a PET scan and MRI of the brain this week and the surgeon said that the brain was clear but he has two spots on his lung, one of which they "are very concerned about." Which I assume is cancer.    

                  My question is about what to do next. The dermatologist sent him to this general surgeon in the Jacksonville, FL area who ordered all of the scans and is going to call on Monday to talk about doing a biopsy.  We also have an appointment at Moffitt Cancer Center in Tampa for June 5th and will meet with an oncologist and surgeon on the same day. I am wondering if we should wait and have everything done at Moffitt or have the surgeon do his thing here and then follow up at Moffitt. I feel like my dad should have it done at Moffitt since they are the best cancer center in FL, but I also feel like we have been waiting for all of these appointments and tests and the weeks keep ticking by... I just worry that the longer we wait the worse it will get (and it's already pretty bad).

                 So if anyone has any advice I would appreciate it. I feel lost trying to navigate through the process. Thank you.

 

Catherine

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mwang122's picture
Replies 5
Last reply 4/18/2018 - 2:58pm
Replies by: mwang122, Janner

Hi Janner and everyone,

I need a little help with my pathology report, I found a mole changing in size  in December 2016 and it came back as severe dysplastic. I did second surgery to remove more in Feb,2017. I attached the reports.

Diagnosis: Compound Melanocytlc Proliferation With Severe Dysplasla • Closely Approaching
Peripheral And Deep Margins • See Note . Left Temple

NOTE: Based on the severe degree of melanocytlc dysplasla, the proximity of the margins, re-excision Is recommended in order to ensure complete removal.
Gross:Thin, 5x4 mm, tan granular pigmented surface, inked. Bisected, totally submitted. (kg)

Microscopic

A disorganized junctional proliferation of melanocytes in a lentiginous growth pattern is present with several junctional nests and severe random cy!ologic atypia. There is no slgnifican1 migration of
melanocytes into higher epidermal levels, and this finding is confirmed with a Melan-A immunostain. Melanin incontinence and inflammation is seen. Aggregates of melanocytes are present within the dermis. The atypical melanocy!es closely approach the peripheral and deep margins.

 

SECOND:

Diagnosis
Biopsy Wound. No Residual Dysplastlc Nevus -Left Temple (lyb)

Gross

Oval-shaped, 10x10x5 mm, tan granular surface, It has what appears to be a notch which is placed at 12 o'clock 12 o'clock to 6 o'clock margin is marked with green ink and the remainder is marked with
blue ink. Sectioned from 12 o'clock to 6 o'clock, 4 pieces, totally submitted. (kg)
Microscopic
A poorly circurnscribt,d zun<1 uf dermal fibro,;ls is present with prulife,..ling sl,mder ,md ph.inip fibroblasts arranged in a partially horizontal pattern parallel to the skin ,;urface. There 15 neovascul•uizallon and
chronic inflammation. The overlying epidel'mis is somewhat flattened. No residual dysplas!io nevus is
identified.

Since I recently found two more moderate dysplastic moles ( one old mole  suddenly getting darker in 2 weeks, the other is new, just a little bit orange than all my other moles, very small 1mm size)   and therefore I am so paranoid right now. I am afraid the recision of the severe one may be not enough since it only leaves a 2cm scar on my face especially when I heard it might be hard for pathologist to distinguish severe dysplastic and in-situ MM.  I do understand I am now at high risk of developing melanoma later in life since I got 4 dysplastic moles already( 1 severe, 2 moderate and 1 mild) and countless sunburn when I was 13 years old.  I am also afraid that in the future, pregnancy will also be a factor of developing melanoma. Can you guys give me some information? By the way, I am 25 and Asian with fair skin,

Thanks

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jennunicorn's picture
Replies 12
Last reply 4/18/2018 - 2:15pm

I found a recommendation for this book on a blog of a young woman going through cancer. I am almost done reading it and I am so glad I found it!

"Everything Changes: Insider's Guide to Cancer in Your 20's and 30's" by Kairol Rosenthal

It's not a guide really, but it's written by a woman who found out she had thyroid cancer at age 27 and decided to write a book made of many different young cancer patient's stories. 

This is the description from Amazon:

On a shoestring budget and with tape recorder in hand, Kairol Rosenthal emerged from treatment and hit the road in search of other twenty- and thirtysomething cancer survivors. From the Big Apple to the Bible Belt, she dusted the sugarcoating off of the young adult cancer experience, exposing the gritty and compelling stories of twenty-five complete strangers. The men and women in Everything Changes confess their most vulnerable moments, revealing cancer experiences they never told anyone else—everything from what they thought about at night before going to bed to what they wish they could tell their lovers but were too afraid to.

Being 29 myself, it definitely feels lonely sometimes... all of my friends are getting married, having kids, getting engaged and have never had cancer of any kind. Every day it seems like a new fun life event is happening to someone I know on Facebook... and I'm over here like, yeah I just got my first ultrasound and it wasn't for pregnancy! 

Anyway, for anyone else that is young and wants a good book to read to not feel so alone in this cancer world, this is a great one. It's good for all ages, really.

Jenn - stage IV NED - Completed Ipi/Nivo (Yervoy/Opdivo) + surgery

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gopher38's picture
Replies 4
Last reply 4/18/2018 - 1:39pm

Hello.  I don’t expect to get an answer here, but, who knows, maybe someone has some ideas.  Lots of knowledge floating around here.

Has anyone experience pricking all over their body after their WLE?  I started getting this not-continual-but-regular pricking sensation after my WLE/SLNB and PET scan, but before I’d started my immunotherapy (so it’s not from the nivo/ipi, although it has continued since I started with that, for five weeks or so now).   It’s most frequent on the hands, but also on feet, torso, face, neck, etc.  I’ve – of course – been reading on-line, and they say that liver problems can cause this, so – always expecting the worst - I thought maybe it was melanoma spread to the liver, but my scans have all been clean (and my blood tests for the clinical trial have all been normal).  I thought maybe it was something in the PET scan fluid, but the nurse tells me that that would have all been out of the system in a few days.  Originally, I chalked it up to flat out nerves, but I’m truly not that anxious right now.  I’ve had operations before, and I’ve never had a problem with anesthesia or latex or whatever.  I suppose it could have nothing to do with my melanoma and associated operations, scans, etc, (like suddenly developing MS) but the timing would be truly strange.  I don’t think I’ve changed shampoo, detergent, etc.

I’m just wondering about this WLE.  My mole was about the size of my thumb in the middle of my back, and I think the doctor said that they were going to take twice its width on both sides, which seems like a lot of skin.  I’m just wondering if they could have done some nerve damage during something like that?  If so, could it manifest itself in other parts of the body, like my face or hands?   What about the lymph nodes?  They took them out on both sides.  Kind of grasping for straws, but I can’t think of what would cause this.  Ideas appreciated.

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Anonymous's picture
Replies 3
Last reply 4/18/2018 - 9:49am
Replies by: JuTMSY4, jennunicorn, Anonymous

I have 2 1-2cm lesions on the spleen that no longer light up on PET, but which show up on CT. Has anyone had a similar situation where the mets go active again? We are deciding what to do with continuing treatment, so this feels important.

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JAE's picture
Replies 4
Last reply 4/18/2018 - 9:16am
Replies by: Bubbles, Prd10

Hi All -- my 40 yr old husband was diagnosed with Stage 4 Melanoma shortly after undergoing emergency surgery to remove a large brain tumor last May. He does posess the Wild type, genetic mutation that allows for BRAF. Subsequent IPI/NIVO immunotherapy (now just NIVO), brain and spinal radiation, BRAF, and an intestinal surgery has helped to end tumor growth and eradicate many tumors.

Of current concern are a large lung tumor and liver tumor that have increased slightly in size and show same to higher "darkness" in scans. His liver tumor was biopsied this past week and we'll get results/discuss next steps this coming week. It's likely that their surgical removal will be considered or recommended. We of course want the least invasive yet highly effective option, which is why I write today. I'm interested to know of others who may have been at a similar point willing to share, or provide any input.

He's being treated at Kellogg Center in Chicago suburbs. Many thanks in advance,

Jennifer

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Lucas's picture
Replies 3
Last reply 4/17/2018 - 5:23pm
Replies by: Lucas, Kevin2016

I recently had an extensive local recurrence located all inside of skin graft. This was removed by a 1cm wide excision which resulted in "close" margins. 7 weeks later i have a few tiny mealnoma dots outside of resction scar. They are right on the edge. I have stage 3b disease and am undergoing opdivo adjuvant just started i treatment. I stopped Keytruda clinical trial after developing type 1 diabetes and horrible arthritis. I also do not see a melanoma specialist (unfortunately) due to being unable to switch insurance at this time. I am in Kaiser system. Im hoping for advice on next steps or similar experience? thank you!

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Scooby123's picture
Replies 6
Last reply 4/17/2018 - 5:17pm

Hi Guys,

To all taking vitamins, I would like to know what vitamins you guys take and did you have to get the thumps up by your consultant before taking them. I never get a yes and no if ok and at moment on keydruda.

i am going through meanupause, thyroid issues and on keydruda.

vitamins I take are zinc, magnesium, garlic, b2, vitD,cod liver oil, Cq10, plus a gut bacteria tablet.

After taking zinc, magnesium, B2 my wee was bright yellow anyone on these have had same issue. If so is it normal,

Thanks guys

Scooby ❤️

 

 

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