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
Scooby123's picture
Replies 14
Last reply 4/2/2016 - 5:19pm

Today I went to see a specialist in Gamma Knife. I was very nervous and not been sleeping very well since told I had a spot on brain. 

I saw 3 different nurses who explained every thing in detail which made me feel more confident in the treatment.

The specialist showed me my scan of my brain and where it was he said its small but I could see it clearly. It is located at the back of my brain on the right side. He did say that this treatment is good for tumours which are small. He also said when I have my MRI on Monday before treatment if there is any more they would also treat but praying there is not.

There has been no mention on me starting keydruda  after this , I did ask my nurse she said that due to me stable eles where and just this on brain this treatment is best to treat it and save keydruda for when I need it. I am Brad negative.

Do you guys think this is what you would do , the only thing worries me if more pop up on brain but I will have scans every 3 months but like some a lot can happen in 3 months as we all know.

will have to pray it does not develop any more on brain

hope you all ok and had a lovely Easter break.

scooby123❤️

 

 

 

 

Login or register to post replies.

Angsta39's picture
Replies 1
Last reply 3/30/2016 - 1:06pm
Replies by: Bubbles

I had Stage IIIB Amelanotic nodular melanoma and was NED for 7 months. I went into see Derm in December and pointed ot two spots on my leg that concerened me. After biopsy, it was found that I have in-transit melanoma which moved me to Stage IIIC. By January I had 7 lesions and by February and my first set of T-VEC injections, I had over 30 lesions. 

Started T-VEC injections in February with only 7 injections. After waiting 3 weeks for next injections, doctor decided that I needed 20 injections because of all of the melanoma lesions that have popped up on my thigh. The 20 injections didn't hurt really because I have no feeling in my thigh from prior surgery, but the side effects afterwards were not fun. Within three hours of the injections, I was shaking uncontrolably, running a high fever and vomiting. I was not able to hold down any solid food for three days. I was worn out and sore for the rest of that week and finally got back to normal a week later. This time, I had 20 injections and I didn't even make it home before the shakes started. It was quite scary driving myself home like that, but I made it safely. Again, high fever, vomiting, and shakes but this only lasted over night and today I'm a bit wornn out, but not as bas as I was with the first 20 injections. 

The next time I go in, the doctor wants to do 30 injections. I am not looking forward to that at all, but at this point, I don't know what else to do. I have a new melanoma lesion pop up on my leg daily, it seems. Some have even come together to form one big one. I am just afraid with the waiting for them to be big enough to inject and watching them get so big (even bigger than originl melanoma) that it will end up spreading and I will become stage IV. 

I just feel like I am not doing enough to become NED from this disease. Any advice would be greatly appreciated. 

Login or register to post replies.

A. A.'s picture
Replies 4
Last reply 3/30/2016 - 2:30pm
Replies by: A. A., Polymath, MoiraM

I've had a few melanomas now and with each suspicion there is some uneasiness tinged with fear but an internal dialog that overrides the worse case scenarios. Until this time anyway.

I saw the first mole in November 2009 and it was biopsied in December. Came back positive so was excised later that December and again by a wide margin in January. Caught it early and it was not a big worry. In fact, they didn't expect any more would appear. But three years later a new mole about two inches from the first appeared. It grew faster, deeper, darker. A few excisions later, it was deemed solved. Several moles since have been precancerous, but not a worry. So, after being diligent through 2015, I slacked on checking for moles after my visit in August 2015. A factor was that I got pretty sick starting in September with an upper respiratory cold and have been fighting one bug or infection after another all winter long. So I slacked.

But yesterday the Spring weather came out and I decided to take care of getting my legs ready for skirt season. That's when I saw them. One small but very ugly mole about half an inch from the second site. And a tiny black freckle two inches from that, and 8 more tiny dark black freckles, mostly on the left leg (where all previous melanomas and precancerous moles have been) but also two on my right leg--one of which is exactly mirroring one on the left leg. I then did a thorough body check and found a new, ugly, thick, raised mole on my labia that wasn't there last summer. And half a dozen small, flat, raised moles under my breasts and one beside my belly button. None of this was present last August when I had my last exam. 

And now I am beginning to question the underlying reason that I have had one bug after another since September, and the painful lymph nodes in my groin that were just on the right side in November through February but became both sides and more painful since the beginning of March. And the steadily increasing tenderness of my left breast. And that I haven't recovered my lungs full function since September.

And I can't quiet the worrisome voice anymore. Because my appointment that was scheduled for April 22nd was bumped to right away when I told them about the new moles. My instinct on whether a mole was a problem or not has so far been 100% accurate. Maybe I am being a worrywort but I just can't get my mind to find a way to not think, "This is it kid. You're done for". And the next thoughts are immediately, oh my poor girls, and their dad, and my darling dog. And I won't see my eldest graduate college next year, nor my youngest start college in the Fall, nor them get married, buy a home, have children. All the civic projects I am building in my community for the arts won't come to be. And all the children who will be less engaged with the arts because I can't make these projects materialize without me. And how visual art saved me as a child during difficult times and circumstances and how I wanted to create a legacy of beauty, expression, access. But I spent too much time doing unimportant things. And now time is up.

I do hope I am wrong. I hope that next week I find instead a renewed energy toward those things I will be sad to have not built and seen. But for tonight, I cannot sleep.

 

Login or register to post replies.

gale123's picture
Replies 2
Last reply 3/30/2016 - 9:52pm
Replies by: BrianP, WithinMySkin

Hello,

my mother got yervoy and opdivo in combination 7 days ago but she got pneumitis as side effect. She is in the hospital for the last 4 days and getting oxygen. Has anyone any experience with this side effect and how long it can last? She got a lot of steroids but i dont see that she is bether.

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 2
Last reply 3/30/2016 - 8:06am
Replies by: JuTMSY4, jennunicorn

Hello, I am new to this forum and was wondering if I could get some advice. I noticed a mole growing a couple of months ago and didn't really think anything of it. It is now a bit bigger and is starting to worry me. I know the best course of action is to see a doctor but I was wondering if anyone could tell me how serious it looks/if I should see one asap as opposed to my next checkup.

 

Here is a picture, zoomed in. Thank you for taking the time!

http://postimg.org/image/5i8kv06rv/

Login or register to post replies.

Christine.P's picture
Replies 2
Last reply 3/30/2016 - 7:21am
Replies by: Anonymous, jennunicorn

Does anyone have a favorite sunscreen to recommend? I can't seem to find one with all the right protections that feels and smells nice. Spring is coming and I want to get out of the house and won't dare without my sunscreen. 

Ideally, I'd like to find a light, soft lotion with a shea or coconut scent (or at least one that is not fruity or perfumy). 

Christine P. 

Login or register to post replies.

Hi,

Melenoma runs in my family (my mom passed away from it when I was 12), so I've always been concerned that I'd develop it. I've watched my moles closely and I noticed one in particular that my dermatologst had said to watch had changed.

I went back to the dermatologist to have it looked at and sure enough she said we should remove it and send it in for a biopsy. I'm not sure if she did a shave or an excision (I didn't watch or ask because it kind of freaked me out). Anyways, I got a call back today and the results came back as severely atypical and they want me to come back on Monday to remove more and send it in for a second biopsy.

Of course I'm concerned due to my family history of it, but do I have anything to really be concerned about? Is it possible that this is a melenoma?

Thank you!

Login or register to post replies.

WithinMySkin's picture
Replies 2
Last reply 3/29/2016 - 12:21pm
Replies by: jennunicorn, Mat

Jimmy Carter seems to be raising awareness (and money) for Melanoma, whether he wants to or not!

https://www.washingtonpost.com/news/to-your-health/wp/2016/03/29/bloombe...

WithinMySkin

www.Withinmyskin.com

 

Login or register to post replies.

Tamlin's picture
Replies 2
Last reply 3/29/2016 - 11:58am
Replies by: JuTMSY4, Anonymous

 

Re: Lump in groin 

Tamlin -  (3/29/2016 - 8:43am)

New update: consultant called today to say that although nothing else seen near enlarged lymph node which is a good sign, he has referred me to have lymph node removed and tested for melanoma. I'm starting to get a bit scared now. To meet consultant next Tuesday so he can go over the operation with me. Does anyone know if it's safe to fly after this operation as I'm due to go on holiday in May? How long were you in hospital and how long for recovery? 

Thanks 

 

Login or register to post replies.

Charlie S's picture
Replies 13
Last reply 3/30/2016 - 5:59pm

I guess for me, it is never going to end; maybe that is good maybe that is bad.

1987 Stage III unknown primary, hot lymph nodes , surgery and silence until 1996 then recurrence to Stage IV.  

Slew of surgeries, interferon, interleukin, seven recurrences through 2008; then quiet again.

And now, 29 years later, here we go again.

Swollen belly, big leg pain and bad scan.

I kind of thought (with my fingers crossed) that maybe I had paid my dues; but just saying so does not make it so.

I know the rules say no swearing...........................but I am so fucking tired of melanoma

 

Charlie S

Login or register to post replies.

gcooperbl's picture
Replies 1
Last reply 3/29/2016 - 12:51am
Replies by: AllysonRuth

hi all

my father has had persistant pain in his leg and sometimes back during his course of pembro - it has only recently started to get worse the last few days. He is due to get MRI scan tomorrow to see if cancer has spread to bones or get a bettter idea of the pain. 

anyone had any experience of pembro causing severe muscle pain?

he has really bad fatigue as well and has had three doses of pembro, due another one on friday 

thanks so much

Login or register to post replies.

RMcLegal's picture
Replies 2
Last reply 3/29/2016 - 11:32pm
Replies by: Anonymous, BrianP

I haven't posted here in a very long time.  Feeling emotionally drained from the loss of too many melahomies.  But I haven't lost hope...

 

 

Login or register to post replies.

mkirkland's picture
Replies 6
Last reply 4/1/2016 - 9:50am

Does anyone know how long this drug stays in your system once you have finished treatment? 

Thanks! 

Login or register to post replies.

Lin P's picture
Replies 2
Last reply 3/29/2016 - 3:40am
Replies by: Kim K, Scooby123

My mom has been on Zelboraf for about 2weeks and started feeling pain in the tumor on her neck(lymph node).

Does anyone know if tumor pain also can be a side effect of zelboraf?

She also had a radiation therapy in that area for your information.

Thank you.

Login or register to post replies.

jennunicorn's picture
Replies 11
Last reply 3/28/2016 - 10:11pm

Ok, so I have had VERY loud ringing in my ears for almost 2 months now. I've dealth with tinnitus in the past but never to this extent. I noticed the ringing start after a cold I had at the end of January, so I figure it is from that. Had my onc check my ears when I saw her a few weeks ago, she said they looked good, no infection. 

Of course one thing that comes up when you search ringing in ears for causation is brain tumor. I'm sure that's not the case for me, but with the whole melanoma thing, it makes me have to think about it a tiny bit. Has anyone had any experience with ringing in their ears.. like really loud, can't fall asleep at night, hard to hear, type ringing? If so, what have you done to lessen it, if that is possible? And, has anyone had experience with a brain met causing ringing?

I've been taking Lipo-Flavonoid pills since I've used it in the past to stop tinnitus and it worked before. It is doing absolutely nothing now. It is a mix of different vitamins that is suppose to help whatever causes tinnitus. 

Jenn - Stage IIIB  (currently doing Ipi [Yervoy] adjuvant treatment)

Login or register to post replies.

Pages