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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CHD's picture
Replies 4
Last reply 1/11/2017 - 9:45pm

Forgive me for bringing up a topic that isn't maybe totally positive.... but how many of you or your loved ones with melanoma have bucket lists?

My husband has developed major depression since my melanoma diagnosis in 2013 and all my time and energy has gone to trying to help him get through this.  It isn't related to my diagnosis or anything.  It's just a life crisis of his own, mostly related to work I think.  Then my father passed from old age/cardiopulmonary failure in 2014, I lost a good friend with melanoma in 2015, and through it all I have been trying to help my husband, in spite of my own constant doctor visits and less than ideal prognosis.  It has been a nightmarish few years. 

I have a friend who mentioned the other day that I should have been working on a bucket list all this time.  She said it kindly.  She wants me to have happy years.  She wants me to live another 50... but just in case, she wants me to have a few bucket list, happy experiences.  So sweet!

You know, it's funny but I have thought of it before and I realize that would be ideal.  Life happens the way it happens, though, and it's not always ideal.

But I got to wondering about bucket lists and how common they are.  I would love to hear bucket list stories.

Maybe I will get to have a few.  Who knows.  I plan to outlive my prognosis!!  But do you have a bucket list?

I have just one:  To return to the ocean for a few days, where I grew up.

The friend I lost to mucosal melanoma in 2015:  She had an amazing bucket list and family and friends who were totally intent on helping her fulfill every last one.  It was so much fun to live through her vicariously!  I guess what I'm wondering is:  For those of you who are dealing with mucosal melanoma (somewhat poorer prognosis, though some of us are defying the odds!) or more advanced stage cutaneous melanoma, do you have a bucket list?  Do you take it seriously?  Are you living it?

Life is not always conducive to this, I know.  Just wondering how all of you are handling this.

Cheri

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jennunicorn's picture
Replies 17
Last reply 1/12/2017 - 7:44pm

Question for those on here that have experienced hypophysitis as a side effect:

Did you get a headache? How long did it last before you got treated? What kind of headache did it feel like: dull all over head pain or neck and sharp pains in one part of head? Did you feel lightheaded?

I do have Prednisone on hand I can take at any time, I would just hate to jump into it if I don't have to. I have a PET/CT next Tuesday 1/17. I would like to just wait until I get the results of that and results of the blood tests I'll be getting Thursday 1/19 before jumping on the steroid train... but I'm wondering if I'm pushing it? Also have Nivo infusion scheduled for 1/19. All done with Ipi... which is likely the thing that is making me feel so crappy.

My headache has been around since Wednesday evening after getting up from laying on the couch and a sharp pain and tightness occured in my neck which hurt for a bit but went away leaving the headace. Still getting the fever every evening and taking Aleve which helps with that. 

My onc is back in the office on Thursday, so I'll be asking her about the same stuff, just want to get an idea from other patients.

Jenn -  IIIC - currently doing Ipi/Nivo (Yervoy/Opdivo) 

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susanspotless's picture
Replies 5
Last reply 1/11/2017 - 6:18pm

If anyone remembers my original post of Nov. 18 and/or the follow up of 12/8:

My new Dr. ordered a chest CT because of my hoarseness, shortness of breath and history of melanoma. There is also a history of smoking but Medicare will pay for CTs for a history of melanoma. My Dr. ordered a full body PetScan based on the results of the 1.6 X 1.8 cm. loblulated opacity found on the CT. There wasfocal hypermetaboloic uptake with maximum SUV of 3.9. What concerned me the most  was the background mediastinal blood pool uptake which showed a maximum SUV of 2.3 which is worrisome for cancer.

The Dr. then ordered a CT Guided Biopsy of my left lung, the Dr. conducting the test noted that "Initial pathologic wet read demonstrated cells worrisome for malignancy.". Here is where the ball was dropped and I waited for 3 whole weeks for the tissue analysis. I was patient because of the Christmas then New Year's holidays then the snowfall the people of this region are unaccustomed to, but last night I just got so furious and decided I couldn't let this go another day. I was worried that somehow a lab accident occured ( it has happened to me before).  I called my Dr's office and told the med tech I wanted an answer before the day was over. Three hours later my Dr. called back, he said it is not melanoma, it is squamous cell carcinoma (non-small cell cancer). I asked why the three week delay in getting the results to me for the normally 4-5 day results. Excuses were made for the delay, an aplogy was made and promises were made to arrange for surgery ASAP.

I am researching a new internist just in case there are any more ball-dropping incidents. At any rate, I am happy to report that <b>melanoma has saved my life!</b> If it werent for my history of melanoma the Dr. would not have ordered a chest CT when my only symptom was hoarseness which I BTW, attributed to my chronic hives.

susanspotless

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Aloha14's picture
Replies 5
Last reply 1/11/2017 - 5:11pm

My surgeon decided it was time to drain the 3 groin seromas today.  I'm so glad to have some of the pressure off the nerve on the inside of my upper leg. A compression bandage was put on and I'm continuing to wear bicycle shorts. The surgeon said those were ok if tight rather than buying compression shorts. 

The surgeon said I will probably have to come back a few times to get these drained again and to call in a few weeks. I can kind of already feel some fluid coming back in or else it's swelling from the procedure. Will take a look when the compression bandage comes off tomorrow.

 

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Michelle820's picture
Replies 6
Last reply 1/11/2017 - 5:44am

Hi, I have an appt scheduled next Monday for body photography. Of course I am very hesitant! Has anyone had this done here? Will I be completely without clothes? Of course my recent WLE area is above my left breast:/ I am very nervous, mostly embarrassed.  Hate to say this is one of the main reasons I avoided full body checkups at my derm...only went for problem visits...which led me to my current situation (had suspicious tiny black "freckle" looked at which was a melanoma in situ). I have a million freckles and moles. Plus a strong history of basal cells.

thank you for any info or suggestions you may have!

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snow white's picture
Replies 14
Last reply 1/12/2017 - 2:45pm

Hello my friends.  i am reaching out for my Mom.  She is desperatley in need of some kind of support to get her through this time with my Dad.  Unfortuantely, the boards I believe are just to much information for her.  Mom has tried to get in contact with a few groups, but unfortunaltey has never received a reply back.  I have also reached out to MRF to see of any suggestions from them.  Let me know if you have any suggestions.  THANK YOU!!!!

Jen

Jennifer-- Dad has stage IV Mel. No primary found. Treatment has been: Gamma Knife to the 15 brain mets, Craniotomy to remove 3 large tumors in brain.  Currently receiving Opdivo every other week.

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snow white's picture
Replies 3
Last reply 1/12/2017 - 2:47am

Hi All and especially Paul.  I was able to get Dad an appointment with Dr. Hamid on Monday Jan 16th, coincidentally I believe Paul has an appointment the same day!  I am hoping we are able to get all of his medical records by then.  BIG THANKS to Paul for Jasmine's contact info, she was great to speak to.  I don't know really what we expect to achieve seeing him, but I just feel more comfortable having another set of eyes that specializes in mel. on Dad.  If you have any suggestions on questions to ask or any input at all please let me know.

xo Jen

Jennifer-- Dad has stage IV Mel. No primary found. Treatment has been: Gamma Knife to the 15 brain mets, Craniotomy to remove 3 large tumors in brain.  Currently receiving Opdivo every other week.

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Bigguy58's picture
Replies 4
Last reply 1/10/2017 - 6:34am
Replies by: Bigguy58, Janner, snow white

Stage not determined yet. Clark level 3. Mole found on arm. No biopsy of sentinel lymph node yet. Unsure if needle or resection is best. Very worried, 58 years old. Was ready to retire early. Now unsure if future.

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snow white's picture
Replies 5
Last reply 1/10/2017 - 1:08pm
Replies by: snow white, _Paul_, debwray

Hi All.  I called Dr Hamid's office(the Angeles Clinic) and left a message on Friday and stil have not received a call back.  Does anyone have any info on how to get in touch with him?  

Thanks!

Jennifer-- Dad has stage IV Mel. No primary found. Treatment has been: Gamma Knife to the 15 brain mets, Craniotomy to remove 3 large tumors in brain.  Currently receiving Opdivo every other week.

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magnus31's picture
Replies 4
Last reply 1/10/2017 - 12:57pm

Hi friends,

M34 stage IV off to India on holidays in two weeks and considering taking Dukoral (an anti-cholera and diarrea vaccin dissolved in water and taken twice before departure).

Would you see taking Dukoral as any risk to my ongoing Nivolumab treatment?

Will ask my medical team but wanted your views.

Best,

 

Magnus

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Showmegirl's picture
Replies 12
Last reply 1/12/2017 - 11:08am

I just recieved my pathology report from my initial biopsy.  I could really use some help trying to understand this report.  I go to see the surgeon this week, but I'm going crazy now.  So any insight would be greatly appreciated.  THANK YOU!!

This is what the report says: Malignant Melanoma, Margins - Positive

Tumor size- 0.7cm

Macroscopic Satellite Nodule - not Identified

Histologic type - Nodular melanoma

Maximum tumor thickness - At least 1.88mm  (Clark's level IV)

Ulceration - Not identified

Peripheral margins (invasive) - Negative; distance = (0.3mm)

Deep margin - Positive

Mitotic rate - At least 1 per mm

Microsatellitosis - Not identified

Lymph-vascular invasion - Not identified

Perineural Invasion - Not identified

Tumor Regression - Not identified

AJCC pathologic stage - pT2a, pNX, pMn/a (stage at least pT1B)

Non brisk tumor infitrating lymphocytes present

 

 

 

 

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Toddmichael's picture
Replies 2
Last reply 1/12/2017 - 5:34pm
Replies by: Toddmichael, marta010

Hi - starting 5 sessions of radiation this week.  I'm wondering what to expect, hopefully nothing too severe.  have had radiation before on top of head and only real side effect was some reddening.  I've been told about the slight chance of it affecting my saliva.  Thanks for any input.

Todd Guzy

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Dreaf01's picture
Replies 10
Last reply 1/9/2017 - 1:54pm
Replies by: Dreaf01, Janner, Ed Williams, jennunicorn, Anonymous

Hello everyone! First of all I want to send prayers and good vibes 2 everyone. Quick question, on 12/29 I had a SNB and WLE with 2 nodes removed frommy groin, both negative as well as clear margins. I follow up with my surg. Oncologist on the 16th. About 3 months ago I had a terrible tooth abscess that lead to severe facial and jaw swelling. After i had two teeth removed most of the swelling went down except a small lump on my jaw. When I press on the lump it moves around and sometimes feels like it disappears, but it always comes back. Should I be worried ? I do apologize if I sound crazy, i have become extremely anxious since this whole melanoma thing started.

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White wine was actually the only kind of alcohol with which an association with melanoma was discovered. Every drink of white wine per day was linked with a 13 percent increase in melanoma risk. And participants with an intake of 20 grams or more of white wine daily were 73 percent more likely to develop a melanoma on their torso. The risk was shown to be greater among women than men, probably because men are usually larger in size and can metabolize alcohol better. Surprisingly, no correlation between consumption of red wine, beer, or liquor and the likelihood of developing melanoma could be established.

read complete article at

https://jonbarron.org/cancer-alternative-cancer-therapies/white-wine-and...

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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skousal's picture
Replies 16
Last reply 1/11/2017 - 4:43pm

I am 25, had a WLE and SNB, one node had micro-metastasis. Pet scan did not show anything concerning per the doctor. I know I have a few different options now. I can have a complete lymph node dissection (groin) and receive a systemic therpay (doctor said my veins are small and I would need a port) or I could do nothing. I saw Dr. Merrick Ross at MDA and he recommends an aggressive treatment plan. I am a nurse and I work 12 hours shifts on my feet and I fear the surgery will force a career change, which is okay, I just want to be prepared. Any insight, advice or personal stories would be appreciated as I make this decision. I have been reading many of your stories and I hope for the best for all of you!

Thank you, Shawna  

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