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
Anonymous's picture
Anonymous
Replies 14
Last reply 11/16/2016 - 9:01pm
Replies by: _Paul_, John-Q, SOLE, Ed Williams, Geoff Linschoten, Anonymous, Janner

Hello I was diagnosed with stage 3 melanoma last year and now have shown a recurrence in the same leg and small spots on the liver. I have been looking into Rigvir for a while and many look at me as if I'm crazy. I have small children and need help and have heard back from their clinic but want to speak to people wgo have tried it. hope4cancer.com

Login or register to post replies.

lmccann2016's picture
Replies 14
Last reply 11/24/2016 - 2:42pm
Replies by: John-Q, lmccann2016, imgonnabeatthis, SOLE, Anonymous

Recently diagnosed with melonoma. It has been removed however tumor was 4.7 mm mitosis was 7 not ulcerated and margin cleared by 0.3 mm. Seen oncologist and had fine needle as I have swollen node and shows cancer from pathology report. Nov 4th under going wide excision to clean up neck get more margin and SLN biospy removing all nodes on left side of neck where original melonoma detected. Well I am scared. My name is Lisa 3o have a family and now after this I have just stopped everything. Depressed anxiety you name it. My biggest fear is dying funny I work as a personal support worker.

They haven't given me a stage however I have been reading and if it's in nodes I am stage 3 I guess I'm confused some say two some say three from what I read. So far organs are OK no spread at this time.

Any advice would be greatly appreciated

Lisa McCann

Login or register to post replies.

Karensway87's picture
Replies 3
Last reply 10/26/2016 - 8:13pm

I recently went to a chiropractor who noticed a wierd mole on my back. Two spots. One of them I knew was a tiny round mole from as long as I can remember. But, it has gotten bigger and it is very uneven. And ragged edges. I went to dermatologist and he did biopsy ( no results yet) but, what I am concerned with is him talking to the nurse while doing it saying 12 mm with irregular pigment. He then said to me , it's probably nothing but, then he handed me a brochure on skin cancer as I left. I have one week to wait for results & am nervous. I just knew someone who died from skin cancer. And a friend who had melanoma & had surgery. The other spot was also biopsied & he said 6 mm irregular pigment. Any insight? I don't know what any of this means. Thanks

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 8
Last reply 10/27/2016 - 9:17am
Replies by: Johnjk04, BrianP, cancersnewnormal, snow white, Anonymous

Long story short, diagnosed in 2014 Stage 4, done the interferon, IL-2, Ipi, opdivo and now in genetic  clinical study.   The dr is only doing ct scan (chest, abdomen & pelvis) & mri of face (mel spread to sinus cavity).  When I asked if they will be doing pet scan he said no, the study does not require it. My question is should I be concerned of not having a pet scan? Is the ct & mri enough since it is covering the areas where the tumors are?  Wanted to get opinions before I call my local onc and talk to him and see if he recommends pet scan.  Thanks for your advice.

Login or register to post replies.

Aida Ballesteros's picture
Replies 2
Last reply 10/24/2016 - 11:08pm

Today a Dr who is friends with my dad told him about transfer factors, and how a friend of his took this therapy to treat his bone cancer and is and has been NED for almost 10 years now, without chemo or radiation. Has someone heard anything about this therapy? Is it even an option?

Login or register to post replies.

Fressia's picture
Replies 1
Last reply 10/25/2016 - 1:15pm
Replies by: Treadlightly

Hi Everyone, 

I had my post-surgery follow up today. I was diagnosed via shave biopsy which initially revealed the depth to be at least .67 mm with a mitosis rate of 3/mm2, non ulcerated, and lymph/vascular involvement not identified.

Wide Excision revealed:

-maximum tumor thickness to be 2.15mm (invades recticular dermis)

-macroscopic satellite nodules not identified

-ulceration not identified 

-regression not identified 

Margins: 

-Peripheral Margins: uninvolved by invasive melanoma distance of invasive melanoma from closest peripheral margin: 8mm

-Deep Margin: uninvolved by invasive melanoma distance of invasive melanoma from closest deep margin: 16mm 

-mitotic index: 2/mm2

-lymph/vascular involvement: not identified

-perineural invasion: not identified 

-tumor infiltrating lymphocytes:present, brisk. 

-tumor regression: not identified 

2 lymph nodes were removed and those revealed no metastasis..... fantastic news but why do I feel worried and scared?? 

Based on the overall results I am Stage IIa

I am very alamared by the depth melanoma based on the WLE...... I know the depth of the shave and wide excision cannot be combined, so what does this mean? The uncertainty bothers me. 

Secondly, what's next? My surgical onocologist said it would most likely be monitoring and follow ups with derm but that he would consult with the tumor board and see if any additional therapies are warranted. I asked about routine CT/PET scans and he said these are only needed if there are symptoms.... is this true?? I  feel like it would be best to schedule them routinely along with the derm follow ups. 

For those of you who are or have been Stage IIa.... what's next now? Monthly skin checks, follow ups with derm, follow ups with primary....? I just want to make sure I'm not missing anything. Thank you for taking the time to read this post! I've learned so much about melanoma through this website and I am very thankful to have the this as a resource especially during this roller coaster 

 

Login or register to post replies.

Jubes's picture
Replies 35
Last reply 10/29/2016 - 4:52pm

Diagnosed stage 4 June 2014, pembro 9 months shrinkage of lung met from 8 cm to 11mm stable Jan-April now 16 mm and more active on SUV 

I've been waiting for the results of this last pet scan to update. And the news was disappointing. After 6 months my lung met has grown from 11mm to 16 mm and SUV gone from 3.2 to 7.4. I know this is tiny compared to what many of you are going through but so disappointing as its the first growth since my tumour shrinkage on Pembro. 

I had to stop after 9 months (last year August) due to auto immune reactions and have co incidentally been on infiximab this last  6 months for the side effects

the doctors are discussing in an interdisciplinary meeting on Friday but just wondering what you all would choose given these options

1. Back on pembro /with/without stopping infliximab

2. Radio surgery

3. Garden variety radio

4. Big surgery

5. Wait and see

6. There are apparently some clinical trial pills that I don't qualify for due to my immune response but they may be coming generally available soon

thanks for any thoughts

anne-Louise 

 

Login or register to post replies.

JoshF's picture
Replies 11
Last reply 10/25/2016 - 9:49pm

Hi all! I posted a question regarding responses for people who had sub-q's. The responses I received were great. One of the key takeaways for me was people noticed tenderness/soreness in and around the sub-q. So a few questions....

How long did soreness/tenderness last?

How long until you noticed it shrinking? Days...weeks?

For those that had multiple sub-q's...did this happen one by one or was it something that happened simultaneously in all tumors?

Reason I ask is that I have roughly a 2-3CM tumor in my shoulder (deltoid). That thing started getting really sore and hard Thursday nightish. It stayed that way until today. It's still firm and tender but not as bad. Can't really say it shrunk yet which is why I ask. I'm cautiously optimistic and know responses vary...rapid to over time. If this is in fact inflammatory immune response, I don't know what to expect as I have no experience. I'm praying this sucker is being broken down as I write this. I appreciate anyone who can share. I found it encouraging that people said they experienced this and the it happened to me but I'm tempering expectations. Thanks.... Be well!

Josh

Let's work for better treatments....for a cure!!!!

Login or register to post replies.

Hukill's picture
Replies 6
Last reply 10/25/2016 - 10:24am

I got the results of my 14 week scan on ipi/nivo combo. I had 7 mets between both lungs. 5 are gone or to small to show on the scan and the other 2 are down to 2.5mm and 2mm. I will continue on my current treatment plan. I've had a very dry mouth for about 5 weeks now, dr gace me a prescription for artifical saliva but doesn't seem to help.

Login or register to post replies.

jennunicorn's picture
Replies 32
Last reply 10/24/2016 - 6:25pm

Hey everyone, so I got a letter from my insurance company, Blue Shield, that they are denying approval for the Ipi/Nivo combo. Their reasoning is that because I did Ipi and my "disease has worsened" that they will not re-approve the same drug. Then they have the nerve to say "Opdivo is not covered in patients that have recieved treatment with this medication (Ipi) because it works in a similar way to treat cancer"! Excuse me?! I would love to strangle the "physician advisor" that works for Blue Shield right now! Are they complete morons?

I have already emailed my oncologist's office and will follow up with a phone call tomorrow. I can't imagine this is the first time this has come up. Has anyone dealt with something similar here? It says either myself or my doctor can file a greivance if we don't agree with their decision and they'll have an answer back within 30 days... %@!$ YOU!

Sorry for the angsty post... just got back from a really nice week away with friends and this was the last thing I wanted to come home to.

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

Login or register to post replies.

Sebastian's picture
Replies 5
Last reply 10/24/2016 - 9:42am

Hi.
Can anyone tell me something about this treatment? 4 days ago I get first dose of treatment. I have 25 lumps under my skin. Few are very big. Looks like stones under my skin. For now I don't have any side effects. Can anyone had same situation? How fast this treatment working, if will be working? How lumps disappear? How the lumps are changing?
Please, let me know if You had similar story...

Regads,
Sebastian

Login or register to post replies.

SOLE's picture
Replies 3
Last reply 10/23/2016 - 9:11am
Replies by: SOLE, Janner

On the topic of residual melanoma, what conclusions can be drawn from the WLE?

My original Breslow was: 2.85mm but no clear deep margins.

On the WLE 7 weeks later: 1.47mm. The wound had obviouly healed.

Am I to understand that the two measurements are related? How so?

Login or register to post replies.

Hello! 

I thought I'd share this article for everyone out there receiving Keytruda.

http://www.onclive.com/web-exclusives/mature-data-sustain-frontline-os-b...

Wishing everyone a happy and healthy weekend. 

Best,

Katie 

Login or register to post replies.

SOLE's picture
Replies 11
Last reply 10/25/2016 - 1:53pm

In Canada, we are unfortunately behind what the FDA approves and thus I am faced with impossible choices in my view. As a reminder I am Stage 3b with "rare isolated cells" found in one node.

1) Interferon

2) CLND and access to 2 clinical trials: interferon-pembro or placebo-nivo (I think...)

3) Watch and wait

Am looking for your wisdom please.

 

Login or register to post replies.

Pages