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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lbkimball's picture
Replies 11
Last reply 7/19/2014 - 11:30pm

 

Hi there,

I know most melanoma patients don't receive chemo, which is the most common scenario for a chest port. But it's virtually impossible for the nurses to find my veins, and now that I've started an every-3-week infusion of PD1, we've decided that spending 30 minutes and many, many pokes is not worth it, and that a chest port shall be installed on August 7.

My question is, can the port be used for PET/CT and MRI contrast injections? Also, it seems surprising to me when people have mentioned using a "numbing cream" - does it hurt to have the port accessed?

Any other wise words would be greatly appreciated!

Thank you in advance,  

laura - stage IV with lots of brain and body mets. 

 

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http://www.healio.com/hematology-oncology/melanoma-skin-cancer/news/online/%7Bbb5a811b-8d08-4cb6-bcaf-b3f05924916d%7D/lymphovascular-invasion-regression-novel-prognostic-factors-in-thin-melanomas

"median time to local recurrence was 79 months, the median time to regional recurrence was 78 months and the median time to distant recurrence was 107 months"

 

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MattF's picture
Replies 8
Last reply 7/25/2014 - 8:52am

Hello All

Just a quick update.... newest PET /CT showed increased activity in my bones, lungs and liver

 

Plan now is to stop the Tafinlar and Mekinist as of today and make the switch to ;Yervoy (Ipi) within a week or so once insurance is done.

 

it seems like the right course of action. 

 

Any thoughts?

 

Thanks 

Matt

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oldblue's picture
Replies 8
Last reply 7/19/2014 - 7:54am
Replies by: oldblue, VLMD1986, Ed Williams, lbkimball, Anonymous

 

Dear All.

Last month I had what I thought was a wart removed frommy L thigh and it turns out it was a stage malignant melanoma. It was graded as Clarl Level 4 and Breslow depth 5mm. There is vascular involvement. Mitosis was scored at 5. My LDH blood test was normal.

I then had a PET CT scan and the results were negative to tumour or mets.

This week I had a lymphocytogram (agony) and ultrasound and the reports were good. It showed normal lymph in my groin and uptake from the primary into two sentinel nodes.

I went to theatre two days ago and had a wide margin excision and removal the two sentinel nodes in my groin. I had another suspicious but not sinister mole removed as a precaution and for testing from my L cheek.

I will receive the results from the procedures in two weeks.

Is this how the disease picture progresses? My feeling is that I some good prognostics and some bad prognostics, but I am not sure if that is how it tends to go and that I am now following a well trodden path to my extinction a year or two from now. Or,is it possiblethat the initial histopathology report may have been over stated.

I'd be grateful for any advice.

With best wishes and thanks to all.

Nigel.

 

 

 

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Becky's picture
Replies 4
Last reply 7/19/2014 - 10:48am
Replies by: Becky, BrianP, lbkimball, Phil S

5 years ago, just before his 21st birthday my son Ben was diagnosed with melanoma. His was a very rare oral melanoma ( on his tongue) that had spread to one lymph node. He did a year of interferon during his senior year of college.

Yesterdays petscan showed NED! Feeling very relieved.

I share this in part to give others hope. Oral melanoma tends be be very aggressive with a grim prognosis. I know, in the melanoma world, 5 years does not mean cured, but I feel like it is a huge milestone.

I am so grateful to this board and those that have given support .There are probably a lot of people who never post, but read to gather information and feel connected.

Keep on fighting

Becky

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tommy90's picture
Replies 10
Last reply 7/18/2014 - 9:23pm
Here is a pic: i57.tinypic.com/atmag9.jpg
 
Yes, the angle is different and yes, the lighting may not be the exact 100% and the jpeg quality may be a bit different too, but this shows the difference. I think the tail (the little blurry brown thing under the mole) has grown and changed. The mole is still very small and I've had it for ages.
 
You cannot see the changes visually unless you have been watching it like a hawk, which I have.
 
I have a derm appt on Monday. I am FLIPPING OUT RIGHT NOW about to cry.
 
can someone reassure me?

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melfighter's picture
Replies 6
Last reply 7/17/2014 - 9:31pm

Just to update on my husband, he has been on the combo since Feb & based on the scans from yesterday, our local monitoring oncologist said the combo is no longer working for him, and told him to him to stop taking the combo. He is now unable to move from the waist down. I tried to get an appointment to see his UCLA oncologist tomorrow or as soon as possible, but was told my husband would have to wait til next Monday.  So hard for me to wait and see him suffer til Monday without any answers.

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Nell's picture
Replies 7
Last reply 7/19/2014 - 5:35pm

I  had my second infusion of Yervoy last week.  I am starting with some diahrrea, and I know this side effect is watched carefully...Are most patients able to continue treatment or does this often result in having to stop? I also am wondering if there is a correlation between experiencing side effects and having successful results with Yervoy.Thank you for the help and information.

One voice can make a song; one life can change the world.

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RJoeyB's picture
Replies 9
Last reply 7/18/2014 - 4:55pm

Is anyone else finding the new "social media toolbar" (buttons to post to Facebook, Twitter, etc.) that's been appearing on the left-hand side of the site for the past several days or more to be extremely distracting and disruptive?  I know that I'm sometimes using my older laptop with 1024x768 resolution, but that isn't an unheard of resolution, even today, and the toolbar encroaches and overlaps some of the text down the left side of the page.  And frankly, I don't think it's necessary or wise to make it so easy to quickly share the posts, specifically here from MPIP over to Facebook, Twitter, Google+, etc.  

I'm using Chrome, but I see the same thing in Internet Explorer.  The bar appears to run along the bottom of the page in Safari on my iPad, but when I'm writing a post, it pops up in the middle of the page where I'm typing, so it's even more disruptive there.

I don't know if there are site moderators or administrators who might be reading this, but is there any way to at least get rid of the toolbar completely within MPIP?

Thanks in advance,

Joe

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It's still early in the process, but any progress is welcome — H.R. 4250 was moved forward by a House subcommittee vote on Tuesday.  The goal is to get the FDA to streamline and act more quickly in testing and approving new ingredients in sunscreen that are already available in Europe and much of the rest of the world (none new in the U.S. since the 1990's).

http://www.nationaljournal.com/health-care/your-sunscreen-is-really-out-...

More details on the bill here:

https://beta.congress.gov/bill/113th-congress/house-bill/4250

Joe

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5dives's picture
Replies 6
Last reply 7/16/2014 - 1:22am

Hello everyone,

I'm just reaching out, mainly in case somebody has a tip or bright idea I should be moving forward with in the coming days and weeks. 

I live in Chicago. My primary lesion was .81 mm, mitotic rate 1, Clark's level IV, superficial spreading.  I just had my wle / slnb on Thursday, and I'm recovering well at home.  They took only one node for biopsy after the radioactive dye procedure. 

Results today tell me that the surrounding tissue removed with the wle was clear, but the node they took had a "small amount" of melanoma present.  I will get the more definite percentages after a final stain has been run. I will have those results on Thursday. 

I have a few questions for the group.

1. What is the path of melanoma after the nodes? In other words, if there's "only" cancer in one node and in no other nodes, does that mean it hasn't spread beyond the nodes? Do you have any thoughts on having the full inguinal node dissection or if it's not necessary if the scans are clear (brain, lungs, etc)? I do want to be agressive.

2. My doctor is Joseph Clark at Loyola. I have posted about this before, because Dr. Clark works out of Loyola Medical Center, which is not a Center of Excellence, but I know he personally has a very good reputation for melanoma, and he is heading several clinical trials.  I do have access to Northwestern Memorial (Dr. Mary Martini) and University of Chicago (Dr. Thomas Gajewski), but going through the process of getting a second opinion from either of them would delay my scans, which I am eager to have.  I feel like maybe it's okay to have a great doctor in a lesser hospital, but I'm not sure.  I'm open to suggestions. 

3. My understanding is that there are no "good" treatments for stage 3, and that if I hope to have treatment in order to be agressive, I'll need to seek a trial, and there aren't many for stage 3. Do I have that right? 

Thank you in advance for any thoughts you may have, and feel free to ansI wer only the parts that interest you.  I put a lot of trust in the wisdom of this group.

Best, 

Elaine

http://melanomadame.blogspot.com/

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Ginger8888's picture
Replies 3
Last reply 7/19/2014 - 8:50am

Hi everyone, i have a question..I did the 30 day HD interferon back in April with no problems except a little fatigue in the mornings..It didn't work so i am on Yervoy now and did my 2nd does a couple weeks ago and have shoulder and arm pain..My left forearm was hurting pretty back before my surgery back in feb but has eased some since..My left shoulder and muscle in my upper arm hurts like crazy and has been since may, was wondering if anyone else has had this experience?..I had a left neck dissection in Feb 2014 am seems things on my left side are screwed up..My right arm is starting to hurt some also but i believe that's because i'm using it more because of the other side..No other side effects with the Yervoy yet..

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sisterkk's picture
Replies 5
Last reply 7/16/2014 - 12:35am
Replies by: Anonymous, Ginger8888, sisterkk

A strange new mole appeared on my right breast.  My husband thinks it is a blood blister, but I'm not so sure.  It's about the size of a pencil eraser and appeared quickly.  What do you think (Picture attached)? 

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Anonymous's picture
Anonymous
Replies 0

Hi! This is the first time I have posted here but my nerves are getting to the best of me and I wanted to check in with the group to see if they had any expertise on this subject...

Quick background I was diagnosed with Stage 1 melanoma on the back 4 years ago and have had check ups every 6months since then. 

I have a clear mole on the top of my forehead that gets lots of sun and have had concerns about it for a while but the dr's always brushed it off. I too didn't think much of it, but most recently the mole has become painful to touch or when i brush over it..not sever pain but definitely tender. I made an appointment next week and really want them to remove it. 

Just wondering if anyone else has had a clear mole that was tender that ended up being melanoma or better yet benign...trying to figure out how concerned I should be. 

Thanks :)

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ltalley's picture
Replies 4
Last reply 7/16/2014 - 12:34pm
Replies by: Anonymous, Janner

I would clearly like to know more about the Radial Growth Phase versus the Vertical Growth Phase, and if it is so imporatant why doesn't every pathologists report it in a patients path report? All information on this would be greatly appreciated..

Living Life!smiley

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