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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Anonymous's picture
Replies 8
Last reply 8/21/2014 - 1:35pm
Replies by: Anonymous, deardad, casagrayson, dodgedh2, Janner

As taboo as subject as this is, I need and want to know what it will like and what I can expect to see as my loved one gets closer to death from melanoma.  Does anyone have insight that they can share about this?

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jualonso's picture
Replies 2
Last reply 8/19/2014 - 1:24pm
Replies by: jualonso, gaby

Hi, i just want to inform for people who has problems for dealing with english language that there is a new web with a forum for people who speak spanish language.

 

just for trying to help as many people as possible

 

Http://venciendoalmelanoma.com

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Nicole35's picture
Replies 3
Last reply 8/18/2014 - 12:35am
Replies by: Nicole35, Janner

I am new here so Id like to say hello! I was diagnosed with Melanoma In Situ on 8/6/14, had my WLE on 8/13.. Now I am waiting for those results. In the mean time I have been reading my original path report and noticed some things of concern. First off, my mole, which was flat, small mis shaped, was taken with a shave biopsy and that came back in situ, can In situ truly be diangnoses with just a shave? Or is it more of AT LEAST In Situ? Also path report says things like with in Epidermis there are nested and single melanocytes growing in a lentiginous and confluent growth pattern, the lesion closely approaches a lateral margin and there is pagetoid scatter of melanocytes to higher levels of the dermis.  I hate this waiting game, and am concerned that with a shave biopsy in situ is just the only depth it could be staged at.  im aware of how dangerous Melanoma can be, my aunt had a WLE with no further treatment and 10 years later out of no where had stage 4 melanoma in her lungs. I want to see a melanoma specialist to be on the safe side, but any and all info anyone here could give is very much appreciated. Melanoma is a beast and we are all fighters. Thank you so much! And God bless!

ps. I also have several dysplastic nevi

 

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Anonymous's picture
Anonymous
Replies 3
Last reply 8/18/2014 - 4:08pm
Replies by: lou2, Anonymous

FDA approved this year.  Supposed to detect melanoma without biopsy.  Anyone had this used on them?  Only can be done by derms, not patients by themselves.

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Ginger8888's picture
Replies 12
Last reply 8/23/2014 - 2:58pm

I did the 30 day Hd interferon back in april with just a little fatigue as side effects and failed it..I just finished my last of 4 infusions of Yervoy Wed and have no side effects with it either..I've been reading about the Yervoy and most people are having crazy side effects and it's working for them..I am very worried that i'm not going to respond to it because of the lack of side effects..Has anyone responded to Yervoy with no side effects?..I won't have scans for 4 weeks...I'm stage 3 C

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angtom's picture
Replies 6
Last reply 8/19/2014 - 1:49am
Replies by: angtom, Patina, ecc26, WITom

I have a question my husband had his first ipi treatment 2 weeks ago he is stage 4 melanoma braf neg mets in lung and trunk. He had his tumor harvested yesterday for the TIL trial  at moffitt. We were surprised at how much the tumors had shrunk as was the doctors, the original spot to harvest the tumor which was the largest was almost to small now to get a good sample they wanted 2 cm but said 1 cm would do so they also took another sample from his abdominal wall which had shrunk also has anyone else had this kind of reaction to ipi after first dose?

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jogo's picture
Replies 4
Last reply 8/19/2014 - 2:58pm
Replies by: Kim K, BrianP, jogo, katie1

After 2 3mg/K ipi infusions, a toxic immune related Adverse Event, 2 infusions of Remicade, massive doses of Prednisone, orthostatic hypotension due to adrenal gland insufficiency, massive headaches for several months, convergence (vision) problems (the oculomotor nerve crosses behind the pituitary gland), I'm told I don't have hypophysitis.  My adrenal gland responds to ACTH when it's administered.  When the endocrinologist takes me off the 5 mg Prednisone and 0.1mg fludrocortisone, I'm exhausted by early afternoon after taking things easy.  I'm back on the Prednisone and fludrocortisone. The ophthalmologist has given me eye exercises to see if I can improve my vision without the use of prism lenses.  My internist doubled my synthroid. And I'm still told I don't have hypophysitis.  My husband says it's all in my head.  He's trying to be funny.

.

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arthurjedi007's picture
Replies 19
Last reply 8/26/2014 - 2:04pm

I got my first scan with this Merck PD1. It was a few hours before my 5th dose so week 12. I would like my fellow warriors who have had every medicine fail so we finally get into the EAP to have faith. It does work.

I think my mayo doc was actually a little disappointed I didn't have a complete response but I think it is fantastic to have a mixed response. About a dozen or so tumors are shrinking including the t10 that almost paralyzed me last winter. About 6 or so stayed the same. 5 grew. However this was compared with a scan almost 1 month before I started PD1. Of the 5 that grew the huge 9 x 10 cm in my left shoulder they think is mostly dead tissue now because the huge center was dark surrounded by the red/orange mel. Also it visibly measures 9 x 9 now. The one on my skull that the visible part shrank a lot is internally at my brain so my mayo doc wants my local doc to radiate it so trying to get that started. I maybe should have had it done at mayo but didn't even think of it until we were on our way home. But my local radiation doc is really good. There are also the t12 and l2 in my spine that grew a lot so also waiting to hear if they want them radiated too. The one on my collar grew some since that old scan but the visible seems to have stayed the same. If you notice I refer to most of my mel by bone is because pretty much everything has started in a bone then grew to soft tissue involvment. So yes this stuff definitely works on bone mel tumors too.

So that's it. Finally some pretty darned good medicine if you ask me.

I dunno but I assume it is possible the PD1 might start working on the non responsive tumors? I know it can continue working on the responding tumors. I just don't know about the non responsive ones that grew or stayed the same.

Anyway be strong. Keep fighting. Like I've said many times that someone said to me on here no matter how many medicines fail you have to stay strong and find the one that works for you.

Artie

 

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ABELL's picture
Replies 9
Last reply 8/18/2014 - 4:10pm

My best friends story:

 

Stage IV 52 year old woman.

Doctor gave her 6mo-1yr survival.

Had Cyberknife on brain tumors.

Had radiation on Spine.

All treatments done winth-in the last 3 weeks.

Tumors in lung, liver, lymph nodes & some bone.

Since she has brain tumors, there are not a lot of clinical trials out there. Her Kaiser Oncologist is going to refer her to UCSF for a second opinion/evaluation/possible clinical trials.

 

Ipilimumab will start on 8/26.

Any success with this treatment? What should our expectations be with this drug?

What side effects, if any, have any of you had or having?

Could this lead to NED?

 

Any insight would be appreciated!

~Amanda

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Hi all,

It's been a week + since I underwent two 3 series Cyberknife treatments on 2 brain mets. I have been exhausted ever since. Have you experienced same? Is this normal or am I just depressed that the targeted immunotherapy I'm on (Mek/Taf) isn't getting up in to my brain? Curious about others' experiences after radio surgery to the brain.

PS- so glad I found this forum where people understand what I'm going through and my language doesn't sound like Swahili! Thank you!

Best,

kali

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Annesmith's picture
Replies 4
Last reply 8/15/2014 - 5:04pm

I am being completely paranoid, but....  I have a tender bruise over a knot in my leg (calf area)  The bruise is at least 2 inches long an i can't recall hitting anything.  It is around a mole that is large, but not abnormal compared to my others.  I had a melanoma 1B, 8 years ago.  Any reason to be concerned? 

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mike potthoff's picture
Replies 7
Last reply 8/26/2014 - 7:57am

I was diagnosed today with subungual melanoma.  Started in my finger nail and now recommending that they remove 1/4  of my thumb.  Does anyone know of a cancer center in the US that specializes in this type of melanoma?  Scary for me...four young sons and have always been healthy

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michaelinsocal's picture
Replies 8
Last reply 8/16/2014 - 4:27pm
Replies by: kalisama, ecc26, michaelinsocal, Anonymous, Ginger8888

Hi everyone. I registered and became apart of this community earlier this year after being diagnosed at stage IIIA. Just thought if drop in and post an update. I also have a question I'll ask below.

So far I had the melanoma removed from the outer part of my left ankle last December (2013). Skin graphed the area 2 weeks later and had lymph nodes removed out of my left groin as the SNB found micro mets. The surgery to remove the nodes (10) was back in Feb and all ten nodes came back wnegative, along with a Jan pet scan that showed NED. After all that the only option given to me was interferon so I opted to do the 12 months. I was only able to tolerate the high dosage for three out of the four weeks. The Dr came me a two week break and now I'm on my third month of once a week shots. My weeks are up and down but I've listened to the wonderful advice here and opted to do my shots Sundays, just before bed so I can sleep most of the side effects off.  The two most common things I've noticed is the lack of energy and I tend to develope a lot of mucus.

My question for all of you is if you have ever been directed to drink Alkaline water. Ive done some research and there are many claims that alkaline water contains cancer fighting properties. 

For those who have tried it, could you pass on your recommendations. 

Thanks for reading.

mike

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Anonymous's picture
Replies 9
Last reply 8/26/2014 - 8:52am
Replies by: ChemistLN, vlmd1986, Janner

Hi everyone!  Thank you for taking the time to read my post.  My dad (65 yrs old) is stage 3C, currently on interferon treatments.  Last week, I (I'm 28) had two "moles" removed via shave biopsy.  The physician had said it would be about a week for results.  She boasted about the dermatopathologists quick work and skill.  She called earlier this week to tell me the dermatopathologist wanted to seek a second opinion, causing a delay in about two days for my results.  It slightly worried me but with my family history and past tanning bed use, I was just hoping they were being cautious.  Last night, she called again to ask more questions about my dad - specifically asking what treatment he was on and if his melanoma arose from an existing mole or a new spot. Unfortunatly, we don't really know.  He noticed a swollen lymph node before they found the lesion.  I asked the doctor what she was trying to get at, and she said "honestly, I don't know.  These were just questions that were passed along to me."

I'm thinking the purpose in asking about the treatment for my dad was to see if it was one of the treatments specific to genetic mutations. I sent my dad's pathology reports to them, hoping that might clear up some of their questions. (One of the good things about his treatment at the VA... online medical records!)

I'm hoping someone can help me understand the process of the dermatopathologist.  Would a dysplastic nevi cell stain look similar to a melanoma cell stain?  Do the questions from the dermatopathologist seem familiar to anyone?  I understand that this would be largely speculative but I'm hoping just to gain a little insight on the process.

Thank you!

LNM

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