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
keepthefaith11's picture
Replies 11
Last reply 7/3/2016 - 10:15pm
Replies by: keepthefaith11, kylez, Bubbles, jennunicorn, Anonymous

We are 6 months out from my dad's stage 3C diagnosis. The full body pet scan back in December showed no cancer. Except in the lymph nodes which were taken out. He also had a CT scan in April, completely clean.
They are now back in Europe for the summer and last night my dad had an epileptic type incident. (He does not have epilepsy. He was rushed to the ER and they did a CT scan of the brain. The doctor says he sees a couple of "shadows" in the brain but can't be sure what it is. They are doing an MRI hopefully tomorrow.

Obviously with the recent melanoma diagnosis one has to assume that these are mets.

I am hopefully wishing this is something completely unrelated. But I realized it's unlikely. What do we do now? If these are in fact mets, what is standard procedure? Celeste, I have read a lot of your blogs and they have been very helpful. It seems gamma knife followed by Opdivo or Keytruda is the way to go. But what about surgery? How big do the tumors need to be for that to be an option? This is all new to me and I am quickly trying to read up on it. We thought we might have beat the Beast. I want to make sure I am ready to talk to the doctors in Europe if it comes to that. I also read that gamma knife, immunotherapy followed by the BRAF Inhibitors is a great option. His cancer is BRAF positive.

I am completely devastated right now..:(

Thank you everyone,

Annica

Login or register to post replies.

CourtneyDMiller's picture
Replies 2
Last reply 7/3/2016 - 4:59pm
Replies by: michaelinsocal, Mark82

Hello,

Ever since I heard my diagnosis had the word melanoma in it, i havent been able to resume normal life. I feel so guilty because i should be extremely happy it the was cut it out and you are done kind, but i cant go a hour without thinking about it. I'm constantly checking myself for changes in moles/freckles and feeling for lymph nodes. I do have 3 papable nodes in my groin that i would guess are under a cm - I just had an aytypical mole cut off my buttock and leg, so I'm assuming that is why those are able to be felt. I also can feel one on the right side of my neck and two on the right. They are small as well, but they continue to freak me out. Two days ago i have also noticed that a mole on my arm has began to have a burning sensation. I am just constantly worries about everything. I want more moles/freckles taken off, but the doctors tell me that they are fine, and i should be done being cut on for a while. I had a full body check by my doctor as soon as we found out, and have already had all suspicious ones removed that she picked out. I have an appointment with a well trusted and liked dermatologist in my aera for a full body check again on 7/19. The thing im most concerned about is my lymph nodes.. what do you all think?

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 2
Last reply 7/3/2016 - 4:47pm
Replies by: Cynthia C, Janner

I want to apologize in advance my concern is no where near as important as most of the posts on this forum but I did not know where to go.

I recenty had to switch my general practicioner because my other doctor retired.  I was at my yearly visit with the new doctor and he had me strip down to nothing and examin my moles.   In 15 years with my previous doctor this has never happened.   I am 34 years old and in pretty good health.   Most of my moles look very similar light to darkish brown small spots... some have weird shapes but they have never changed.   I do have a good deal of moles but blame that on being italian and nothing has ever come from them.

I have a few moles that he freaked me out over.  One is on my left butt cheek ( Sorry).  It looks like a dark brown circle and I have noticed it for years when I get out of the shower.  I never noticed it changing its one color but it is an odd shape... it is about 3mm-4mm,    The other moles were on the tops of my feet.   I have about 5 normal looking moles on the top of my feet... again nothing has ever changed.

 

This doctor said that having any moles on areas where the sun doesnt shine is not a good thing and I need to be checked by a dermatologist immediatly.    I asked if my moles looked like melanoma and he said no.. but you should not have moles in these locations and this concerns me.    So now over the 4th of July holiday I keep thinking that I have had these moles forever and my anxiety is taking over. 

Login or register to post replies.

youngann's picture
Replies 4
Last reply 7/3/2016 - 7:45am
Replies by: Anonymous, SABKLYN, youngann, jennunicorn

This question may be better answered by the long-termers here. If I were to start a fund-raiser to benefit Melanoma patients, which organisation would be the best one to donate the funds to?

Ann

http://www.cafepress.com/daybreakdesigns

Home of the original "Crappy Shirt"

Login or register to post replies.

Niki's picture
Replies 9
Last reply 7/2/2016 - 8:19pm
Replies by: desertsun, Niki, Anonymous

Hi All,

I was very active on this board in the 2007 to about 2010 time frame. My husband, Joe, had a Stage IIA nodular melanoma (2.5mm, nonulcerated, high mitotic rate, though I don't remember the number at the moment) removed from his right earlobe in January 2007. He had no other treatment besides WLE/SLN. He also had a PET/CT scan for about the first two years. All has been well. We opted to stop the scans and move on. I have to admit I was obsessed with melanoma research for a couple of years. About drove myself bonkers (and I'm sure my husband too)! But, I did feel I was very well informed if he had needed to make treatment decisions in those years. 

Anyway, I've been out of the melanoma loop for a lot of years. About two weeks ago, Joe started having pretty severe pain in his left jaw area. He's had two tooth abscesses/root canals before, but he said this didn't feel like those did. He saw the dentist on Wednesday. She did bite wing xrays on that side and an exam and said she didn't find anything that would lead her to believe he had an abscess or anything along those lines. She referred him to an endodontist. He saw him yesterday. He also couldn't find anything and suggested a referrel to a periodontist. This is all fine, and we're hoping it is something dental though he has no evidence at all of gum disease. Endodontist gave him a Rx for amoxicillin (in case there's some kind of infection that's not readily evident) and 800 mg ibuprofen, which has helped with pain management since yesterday.

The pain has been up and down, at times very severe. So while pursuing the dental options, I thought it might be a good idea to get our family doctor involved. She thought with his history and with the dentist and endodontist not finding anything, it would be a good idea to get a head CT scan. That will happen on Wednesday afternoon.

So, here we are. I needed someone to vent to who would understand how hard the waiting is. Janner, if you're still here on this board, something you said all those years ago has really stuck with me. That was, "When you hear hoof beats, think horses, not zebras." I've thought back to that quote many times over the years. I shared it with my husband a few days ago, so I'm hoping he's looking for horses too!

Will let you know what happens. Thanks for listening. Niki

Login or register to post replies.

Steve Plasier's picture
Replies 5
Last reply 7/2/2016 - 4:07pm

Today I did my fourth infusion of Yervoy so I wiill see what side effects I get from this one. My  Cancer Doctor told me I'll be off it for the 3 month period. He wasn't in today so I go back in two weeks to see him and find out lab results and what else is in store for me.

Steve

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 3
Last reply 7/2/2016 - 4:02pm
Replies by: jennunicorn, Anonymous, 2smallpeas

Hi folks! I want to preface this by saying I do have an appt. with a Dermatologist for mid August.

I have one mole above my bikini line that has gradually changed in the last few years. It started off a light tan color and fairly small to now be about .25". Not only has it grown, but little dark brown spots are popping up on the mole. It resembles a chocolate chip cookie. 

Admittedly, the only reason I made the appt. was to appease my husband. Because this spot stands out from the rest and my Father being a melanoma survivor, I promised to make and keep the appt. I'm more curious than concerned at this point.

While I know that you can't diagnose cancer simply by looking, does this mole look to be concerning? 

Login or register to post replies.

Aaron's picture
Replies 1
Last reply 7/2/2016 - 3:05pm
Replies by: debwray

So i am sitting here getting my drips and looking over my bloodwork. I see that my red blood cell volume is low again and continues to slightly drop the last three times my bloodwork was taken.  Just curious if anyone else recalls their MCV or MCHC being low.  Granted it is not that low but like I said there seems to be a trend where every time I get bloodwork done it is slightly lower. 

Login or register to post replies.

Replies by: desertsun, beneficii, Janner

I've had some soreness when lying down lately, and I was able to localize it to these 3 areas (circled in green):

http://imgur.com/cik5hug

http://imgur.com/ST4mApf

The pictures are taken from different angles.

The moles in question do look kinda strange. I have a doctor's appointment on 7/21 and I will get it checked out then.

Login or register to post replies.

sallyandree's picture
Replies 4
Last reply 7/2/2016 - 2:30pm

Hello,

Do you know of anyone who has Stage IV melanoma which traveled to their stomach? My significant other's melanoma was removed 6 or 7 years ago, but we found out in March that the stomach problems and severe anemia he had in late February were due to the melanoma traveling to his stomach. He has been taking the Opdivo and Yervoy regimen (soon will be starting just taking Opdivo every two weeks) and we are hoping for the best. But it still is a brutal regimen! I understand that melanoma traveling to the stomach is rare.

Thank you,

Sally

Login or register to post replies.

sleepyt23's picture
Replies 6
Last reply 7/2/2016 - 12:48pm

Hi all. I was diagnosed with Stage 3b in November 2014 at the age of 31. My primary melanoma was just to the right of my spine with a depth of 1.6-mm and ulceration. Two sentinal nodes under my right arm were microscopically positive. I had the rest of those nodes removed and all came back negative.

At the time, the best treatment around, to my understanding, was Interferon. We talked about beginning treatment, but my wife was 3 months pregnant and we didn't really see too much benefit when compared with the side effects. So we opted out of the Interferon and went into a wait and monitor mode.

I've had numerous moles removed and have had two scans. So far everything has come back negative. I went to see my surgical oncologist about a month ago and he was rather adamant that I talk to my medical oncologist about Yervoy. He said that I'm considered high risk and I would likely tolerate the Yervoy treatment with minimal side effects. 

My wife and I met with the medical oncologist yesterday and we're running things through insurance to see how much I would be responsible for out-of-pocket. I hear that there may be co-pay assistance through the manufacturer to further reduce my expenses. There was also talk of having a port installed since I really only have one good arm as far as injections or IV's go. 

I'm curious how the port feels and what the procedure to have it implanted is like.

TMM

Login or register to post replies.

CourtneyDMiller's picture
Replies 3
Last reply 7/2/2016 - 12:37pm
Replies by: Anonymous, CourtneyDMiller, DragonLadyRed

Hello,

Ever since I heard my diagnosis had the word melanoma in it, i havent been able to resume normal life. I feel so guilty because i should be extremely happy it the was cut it out and you are done kind, but i cant go a hour without thinking about it. I'm constantly checking myself for changes in moles/freckles and feeling for lymph nodes. I do have 3 papable nodes in my groin that i would guess are under a cm - I just had an aytypical mole cut off my buttock and leg, so I'm assuming that is why those are able to be felt. I also can feel one on the right side of my neck and two on the right. They are small as well, but they continue to freak me out. Two days ago i have also noticed that a mole on my arm has began to have a burning sensation. I am just constantly worries about everything. I want more moles/freckles taken off, but the doctors tell me that they are fine, and i should be done being cut on for a while. I had a full body check by my doctor as soon as we found out, and have already had all suspicious ones removed that she picked out. I have an appointment with a well trusted and liked dermatologist in my aera for a full body check again on 7/19. The thing im most concerned about is my lymph nodes.. what do you all think?

Login or register to post replies.

Anonymous's picture
Replies 6
Last reply 7/2/2016 - 12:20pm
Replies by: twolf9246, Anonymous, jvictoria

Hi, I am just curious if anyone can help interpret this report.  I went in today for a second shave biopsy and the doctor said this type of nevus is rare and they just don't know whether it is anything or not because it is difficult to distinguish from melanoma.  He said he didn't know why it didn't mention the spitzoid cells in the diagnosis.  They will call me again in a week or so when they get the results.  When they called me on Monday to come back in, the lady who called had no idea what it was, but said it was good and no melanoma, but she said really didn't know how to read the report.  The person who took me back couldn't explain it to me, either, and said ask the doctor, that he had rarely seen the terminology.  When the doctor came in and said it is still questionable, I was quite surprised and don't know if I should be worried or not.  Thank you very much for any help you are able to offer.  

It was read at a Dermatopathology Lab.

Microscopic Description

The sections demonstrate a shave biopsy in which there is compound melanocytic proliferation, consisting of junctional component exhibiting features of dysplastic nevus while the dermal component shows epithelioid and pigmented morphology with prominent nucleoli and moderate cytologic atypia.  No definitive mitotic figure identified.  The spitzoid dermal component inolves the deep margin.

Diagnosis

Desmoplastic Compound Nevus (See Comment)  Comment: The differential diagnosis includes superficial aspect of deep penetrating nevus.  Nevertheless, since the lesion involves the deep margin, re-excision is recommneded to ensure complete removal. 

 

Login or register to post replies.

quincy3068's picture
Replies 3
Last reply 7/1/2016 - 9:02pm

I am new to this form and have several questions.  I have numerous sun damaged spots on my face and head.  Some of the spots are crusty and others , lesions, bleed if I scratch them.  I have one on the right temple area of the face.  It hurts really bad if I push it in or rub it.  I feel like I am getting pin pricking that goes way down deep.  In fact any of them that I touch have that pin pricking feeling all the way down.  Any comments on these spots and bleeding lesions?


Login or register to post replies.

Replies by: Bubbles, JoshF, MoiraM

I responded to Yervoy/Ipi. It shrank my tumours. It also took out my anterior pituitary gland and the damage is permanent.

When I go to see my endocrinologist and my oncologist, they both say that they are anticipating lots more cases of people with damage to their glands as a side effect of immunotherappy for cancer. They see me as as the first of many.

I imagine what I would feel like if my anterior pituitary gland had packed up but the Yervoy/Ipi had not worked. I have said that to them and they both hint that only people whose T cells had been activated by the Yervoy/Ipi would experience the damage to their anterior pituitary gland.

If that is so, I feel a lot better about all those people in the US who have NEAD and are 'doing' Yervory/Ipi because it has now been approved as adjuvant therpy.

Does anyone else know of evidence to support the hypothesis that the autoimmune side effects of Yervey/Ipi only happen in people whose melanoma cells are also being attacked?

Stage 3C Ipi/Yervoy responder with phobia of doctors/hospitals and pituitary dysfunction caused by Ipi/Yervoy

Login or register to post replies.

Pages