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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yoopergirl's picture
Replies 4
Last reply 5/18/2012 - 9:20pm
Replies by: lhaley, yoopergirl, Anonymous

I am clueless about my Melanoma, all I know is that I am stage 1V , was misdiagnosed in 2006 as insitu, had part of  my finger removed also SNB done at that time too and was clear. 2010 devolped a lump on the same arm and was told it was Metastic Melanoma since then have had many surguries and done interferon 2-11, could just do the month was too hard on me. Isolated limb perfusion was suggested and was seen at University of Illinois and was told that since I was cancer free at that time he would not do it, a month later I devolped another lump and again another surgery. Fast forward now it is in my lungs, and lymph node (which I thought all was removed in 12-10) I have several lumps on my arm too, had the ipi this year, just 3 treatments since I had a bad reaction, no 4 th is recommended. Now I need to have another scan on 6-4-12 and if someone here can help me with what questions I need to ask of the doctor. I do not know how deep my original cancer was, I thought I had the pathology report but don't have that either. I really thought I was up on this cancer but since coming to this board I know now that I am clueless. Would appreciate any input...thanks.. 

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tim duduit's picture
Replies 6
Last reply 12/6/2013 - 3:10pm
Replies by: Scuba Doc, Anonymous, tim duduit, rbruce

My tumor is in a lymph node adjacent to my adrenal gland; got the results confirming metastatic malignancy 2 weeks ago and started the clinical trial this week.  I'm on the medication full time now and haven't had any side effects. I'm still struggling with the diagnosis because I don't feel sick.  I still fee funny going in the door to the treatment room because I'm thinking "I'm in here with the sick people!"  Anyone else on this kind of trial drug?

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My tumor is in a lymph node adjacent to my adrenal gland; got the results confirming metastatic malignancy 2 weeks ago and started the clinical trial this week.  I'm on the medication full time now and haven't had any side effects. I'm still struggling with the diagnosis because I don't feel sick.  I still fee funny going in the door to the treatment room because I'm thinking "I'm in here with the sick people!"  Anyone else on this kind of trial drug?

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Eileen L's picture
Replies 11
Last reply 5/20/2012 - 10:37pm

The first day of my BRAF/MEK trial was yesterday! Everything went well. I essentially had to be at the hospital all day because they were drawing blood every 1-2 hours. Today I have to go back to get another blood draw as well as an EKG. I did receive a schedule of my appointments for the next eight weeks and I will be tied up 1-2 days a week, getting various tests and scans. Only one other all day session, however. Most of the other appointments are half days!

 
I am very optimistic about these drugs, the response rates have been very good and I responded very well to a less potent drug for over four years. I get a scan at the end of June which will evaluate how I am doing. Until then, I am as usual trying to live my life to its fullest. We are going away for a few days today and I have brought with me a full array of sun protection, including sun protective clothing, wide brimmed hats, sunscreen, etc. 
 
Will let everyone know how it goes.
 
Eileen L

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kammariel's picture
Replies 6
Last reply 5/19/2012 - 11:21pm
Replies by: kammariel, lhaley, Anonymous

Although I've read a ton on this board, this is my first post. I've been trying to find a profile I read awhile back of brain met survivor with a super positive attitude. She had an astounding number of craniotomies and a picture of the staples on the back of her head. Do any of you know her name?

My husband is currently in the hospital recovering from his 4th craniotomy procedure to the same site to relieve radiation necrosis and hemorraging. He  currently has 4 tumor sites. We're hopeful that the WBR he just completed will shrink them.

The rest of his body was clear from his last scans in Jan, but he's due for more scans. I'm just looking for positive stories right now. I have found many which have given me hope. This board has also made me confident that we are getting the best treatment at JWCI. He's already done Yervoy and steriotactic radiaiton. Thank you to all of you survivors and care takers who are sharing your stories.

Kam

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Anonymous's picture
Anonymous
Replies 12
Last reply 3/7/2016 - 3:10am
Replies by: Tra88, CatHar12, natasha, Anonymous, Janner, MichaelFL

I was diagnosed last year with 1a SSM on my back.  Breslow 0.33mm, no ulceration, one mitotic figure identified in dermis (mitotic rate listed as <1), because of that mitotic figure in the dermis vertical growth phase listed as present (early invasive vertical growth phase), Clark II (I know this is not used as much nowadays).  Had WLE and SLNB (I know it wasn't necessary with 0.33, but I pushed for it), results were clear.  I'm very worried about recurrance/metastasis down the road, because of the vertical growth phase invasiveness.  I don't have a good handle on my prognosis, because even though stage is 1a, Breslow is thin, etc.....it seems like of the thin melanomas, I'm in a high risk category because of VGP and dermal mitotic figure identified.  So, I'm really struggling with this.  What would my prognosis really be with this?

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texaninlouisiana's picture
Replies 4
Last reply 5/19/2012 - 9:13am

 

Good Evening - new poster (unfortunately) wanting to get some hopefully 1st or 2nd hand experience with desmoplastic melanoma.

My father was diagnosed last Friday, had the WLE and SLNB on Wednesday and everything is going along smoothly -- including the lymph nodes visibly not looking any different. We will get the official path report back next week so needless to say, we are praying it's not a combined form of DM, instead of pure.

The tumor was 2.7mm thickness, 2cm WLE was done, and SLNB with visibly clear sentinal node removed.

My question is for anyone who has had experience with this sub-type. I already know quite a bit about it by hours of research and findings but I just haven't found any credible personal info on any forums -- both here and melanomaintl.org -- it's really frustrating. My father has really good docs treating him, including one of the best oncologists around but I get a feeling that this type is not something they have dealt with before which is unsettling; not to mention my father trusts them completely. We have resources in the Houston area, meaning MD Anderson is somewhere we could go but he is so worried about the convenience factor (family is in Northeast Texas) of traveling, etc -- it's very frustrating.

Anyways, back on point...I'm reaching out to this larger forum to see if anybody has had experience with this. The only things I've read on here are other questions from folks wondering the same thing as me.

Thank You All in advance.

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James from Sydney's picture
Replies 2
Last reply 5/21/2012 - 3:39am
Replies by: deardad, AllyNTAus

This was released today and shows GSK BRAF drug shows positive outcome for those with Brain involvement

best wishes to all

James

 

http://www.melanoma.org.au/images/Files/Media_releases/mia_brainmets_180...

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Hi everyone,

 

       I feel so foolish posting on here when I know there are people in much much worse situations. I have been racking my brain for eight days- since my derm first told me that my mole has all four characteristic of suspicion and needs to come off "as soon as possible". Tomorrow is the day I've been waiting for- to get this scary thing taken off. Today the office called to move the appointment- I was afraid to next week- but instead they wanted to move it up an hour. My mom asked me to find out when I could have the results,so I asked while I was on the phone with them. I figured I would have to wait until maybe next tues or wed- possibly a week tops.

   Much to my surprise, they said usually about two weeks, maybe one if I'm lucky. I have never needed valium or xanax so much as the past eight days, but of course I don't have any. I've just been trying to get through until tomorrow, but now it feels like I'm just barely getting into finding out anything.

  I know it's dramatic, and I know I'm so lucky compared to people who have already gotten terrible news, but I'm so very terrified. I can't stop crying, can't eat, sleep, or focus on school. I don't want to be negative, but it's where my mind keeps ending up.

 

Is this normal for biopsies to take two weeks?

It feels like I'm a step behind if there is anything wrong. It takes time to get an appointment if there is something else wrong, and it takes two weeks just to find out if you need that next appointment.

On another note, I haven't told anyone except for my husband and my mother (who then told my dad and my sister). No one else knows what's going on. My husband has left almost every night after work to go hunting, while my mother has uncharacteristicaly scarcely called me this week. This has been the scariest, loneliest, and longest eight days of my life and I'm not sure how or when this journey will end.  I feel so pathetic for not being more positive and so utterly alone.

 

One last question: Does anyone know of any doctors in the oklahoma city area or even in Oklahoma that can "fast track" these kinds of things?

I'm so sorry for the rant and keep everyone in my thoughts and prayers.

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Replies by: brookecz79, Tina D

Hi everyone,

 

       I feel so foolish posting on here when I know there are people in much much worse situations. I have been racking my brain for eight days- since my derm first told me that my mole has all four characteristic of suspicion and needs to come off "as soon as possible". Tomorrow is the day I've been waiting for- to get this scary thing taken off. Today the office called to move the appointment- I was afraid to next week- but instead they wanted to move it up an hour. My mom asked me to find out when I could have the results,so I asked while I was on the phone with them. I figured I would have to wait until maybe next tues or wed- possibly a week tops.

   Much to my surprise, they said usually about two weeks, maybe one if I'm lucky. I have never needed valium or xanax so much as the past eight days, but of course I don't have any. I've just been trying to get through until tomorrow, but now it feels like I'm just barely getting into finding out anything.

  I know it's dramatic, and I know I'm so lucky compared to people who have already gotten terrible news, but I'm so very terrified. I can't stop crying, can't eat, sleep, or focus on school. I don't want to be negative, but it's where my mind keeps ending up.

 

Is this normal for biopsies to take two weeks?

It feels like I'm a step behind if there is anything wrong. It takes time to get an appointment if there is something else wrong, and it takes two weeks just to find out if you need that next appointment.

On another note, I haven't told anyone except for my husband and my mother (who then told my dad and my sister). No one else knows what's going on. My husband has left almost every night after work to go hunting, while my mother has uncharacteristicaly scarcely called me this week. This has been the scariest, loneliest, and longest eight days of my life and I'm not sure how or when this journey will end.  I feel so pathetic for not being more positive and so utterly alone.

 

One last question: Does anyone know of any doctors in the oklahoma city area or even in Oklahoma that can "fast track" these kinds of things?

I'm so sorry for the rant and keep everyone in my thoughts and prayers.

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Anonymous's picture
Anonymous
Replies 6
Last reply 5/28/2012 - 10:26am
Replies by: becky15, natasha, Anonymous, Janner

 

I am from the UK and have recently been diagnosed with an SSM stage 1a on my leg, Breslow depth 0.72mm, no ulceration, no mitosis, no regression.

I am very confused about my pathology report which states an "invasive radial growth phase" for the growth phase but also Clarks 4.  This seems contradictory to me and my consultant has not been much help in clarifying this, saying that it must have a vertical growth element.  Further down on my report it says, against where the mitotic rate and tumour infiltrating lymphocyte figures are shown, "(VGP only) - N/A" and then goes on to note in brackets "0 per mm squared" for mitotic rate and "non-brisk" for TIL.

Can anyone clarify this apparent contradiction?

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I am from the UK and have recently been diagnosed with an SSM stage 1a on my leg, Breslow depth 0.72mm, no ulceration, no mitosis, no regression.

I am very confused about my pathology report which states an "invasive radial growth phase" for the growth phase but also Clarks 4.  This seems contradictory to me and my consultant has not been much help in clarifying this, saying that it must have a vertical growth element.  Further down on my report it says, against where the mitotic rate and tumour infiltrating lymphocyte figures are shown, "(VGP only) - N/A" and then goes on to note in brackets "0 per mm squared" for mitotic rate and "non-brisk" for TIL.

Can anyone clarify this apparent contradiction?

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Mandi0280's picture
Replies 2
Last reply 5/17/2012 - 8:01pm

My husband was diagnosed with stage 3b 7 months ago. He went Monday for a CT scan of the neck,chest, abd and pelvis and have not got a call back from the DR yet. I have called several times with no help from anyone. I finally got a copy of the CT scan results myself! The impression says ....No dominant lymphadenopathy or soft tissue masses. Stable small neck and right supraclavicular lynph nodes. That's all it says...does anyone know what this mean or has had this show up before??? Thanks for any help! Mandi

Mandi

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Anonymous's picture
Anonymous
Replies 5
Last reply 5/17/2012 - 6:49pm
Replies by: Anonymous, Janner

I am so confused about all the varying information on google.  I have found a sit called medhelp in which the dr says this(copied and pasted from medhelp Dr response to question about melanoma in-situ).  Is this really being blown up by me as I am a person who deals with hypochondria.

 

Here is what i took from medhelp-

"I understand your anxiety, but you are taking your concerns too far. Just because you had one atypical lesion doesn't mean that every spot you get will be atypical. (The same is true for a freckle that comes back in the same place.) What you need is to work with a doctor you trust to look at your spots carefully on a regular basis and to test anything that looks worrisome. That seems to be what your doctor is doing.

Most spots don't develop into anything. You don't need to remove them preventively. You just need regular watching.

Melanoma-in-situ is not melanoma. It presumably might turn into it if left alone, which it won't because it was taken off.

If there is a teaching hospital with a Pigmented Lesion Clinic anywhere nearby, you might want to visit there to get an overview and proper counseling. I do not advise your attempting to interpret your own pathology reports.

Good luck.

Dr. Rockoff       

"

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Anonymous's picture
Anonymous
Replies 5
Last reply 5/17/2012 - 11:46am
Replies by: Erinmay22, Anonymous, hopefortomorrow, lhaley

My husband was diagnosed with metastatic melanoma - a week ago. He had a full-body exam with the blue light on Monday and they didn't find a primary site. We are still waiting to get an appointment for the CT/PET scans. Why does it have to take so long just to find out what's going on? Don't they know what this is like - not knowing? Why can't they do something to get this started already?

How do I just get through this next phase?

blogging at www.hazelbecker.com

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