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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Anybody have any information regarding the effect if any on bone density? Have been having terrible pain in right shoulder. Went to doctor, had drags, MRI, got called back to do CAT scan. Have a break in arm bone just under shoulder. Doc says bone "doesn't look right" Wants to talk to my oncologist. Afraid it might be mets. Grasping at straws.

It is what it is.

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DebFromOz's picture
Replies 2
Last reply 4/19/2013 - 12:46pm
Replies by: DebFromOz, DebbieH

hello old mates! I thought i would pop in and say a quick hello - have been NED for a few years and its coming up to my 17 year anniversary this year living with the beast! Have missed you all and our chats but just wanted to let you all know im living the life and think of you all often and hope you are all doing well!

My little baby, Charlotte is turning 7 this year , that time has gone so fast.

I turned 40 last year - something they said wasnt meant to happen - as the beast was supposed to get me 5 years from my initial! HA kicked its butt didnt i????

im out having a blast on my horses and jumping higher than i ever did!

Paul is great.

The house is finally starting to get renovated after 13 years of living in it. ( cant do this too fast these days!)

My health has been up and down - but thats to be expected with the cold weather approaching us fast these days my asthma is always playing up!

Hope to catch up a bit on whats been going on - im mainly on FB these days and would love to catch up with the oldies i used to hang out with more!

Talk to you all soon

Deb

PS Kim K - i need updates - i miss our chats more than anything! The girls must be growing up too fast! FB me girl!!! PLEASE!!!

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hello old mates! I thought i would pop in and say a quick hello - have been NED for a few years and its coming up to my 17 year anniversary this year living with the beast! Have missed you all and our chats but just wanted to let you all know im living the life and think of you all often and hope you are all doing well!

My little baby, Charlotte is turning 7 this year , that time has gone so fast.

I turned 40 last year - something they said wasnt meant to happen - as the beast was supposed to get me 5 years from my initial! HA kicked its butt didnt i????

im out having a blast on my horses and jumping higher than i ever did!

Paul is great.

The house is finally starting to get renovated after 13 years of living in it. ( cant do this too fast these days!)

My health has been up and down - but thats to be expected with the cold weather approaching us fast these days my asthma is always playing up!

Hope to catch up a bit on whats been going on - im mainly on FB these days and would love to catch up with the oldies i used to hang out with more!

Talk to you all soon

Deb

PS Kim K - i need updates - i miss our chats more than anything! The girls must be growing up too fast! FB me girl!!! PLEASE!!!

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vivian's picture
Replies 4
Last reply 4/21/2013 - 3:14pm
Replies by: vivian, rbruce, Kim K, kylez

Hi All,

I had a VATS wedge resection of a lung met (lower left lobe) back in November 2012.   The surgery went well and I have been NED since - Yay!  However, in the last couple of months I have had continuing moderate pain which seems to be located underneath the front ribs in the area of the stomach.  Nothing shows up on scans, and there is nothing palpable.  The oncologist says this is likely  referred pain from the VATS.  Obviously nerves and muscles were disturbed, so perhaps that is true, but it just doesn't feel nerve or muscle pain, more "organic".  The whole left side of my upper body is weird anyway because of the original wide excision, the lymph node dissection, an in-transit excision, and finally the thoracic surgery.   I was pretty convinced that the scans were going to be bad, because of the pain, but fortunately I was wrong.  Do any of you thoracic surgery veterans have experience with referred pain?   Would you just wait it out and see if it goes away or lobby for further testing?  Thanks for any help/advice!

Lear 

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Kim K's picture
Replies 1
Last reply 4/23/2013 - 11:18am
Replies by: dian in spokane

Or was it just her spine that was clean.  How is her lung met?  If she is really NED from the IL-2 we need to shout out loud and congratulate her.  Her odds of living another 5 years just shot up if that is the case!  Plenty of time to get that hand of hers back to playing dueling banjos without skipping a beat.

Hang in there Dian!  We are all pulling for you.  You are one tough cookie!

Aloha from Hawaii,

Kim K

Cancer Sucks Shit Happens Nothing is ever 100% bad, there is a reason and silver lining in everything. Sometimes I need a good light and my glasses to find it though. You can't fix stupid.

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Conrad Lihilihi and Dr. Khasha Touloei made this very well edited video about 4 minutes long. It included some interview snippets with me about 2 years ago, where I talked about the treatments I had had up to that point. If you want to get to know me a little bit the link is http://www.youtube.com/watch?v=cGzoPVs_PFc.  
- Kyle

2 primaries; lung/brain mets in past; paratracheal lymph node currently; participating in  Opdivo/Lirilumab trial

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betsy's picture
Replies 11
Last reply 4/19/2013 - 10:25pm

Ron was staged 3c 4 years ago with primary in his back removed and all inguinal and partial iliac (not sure how many) nodes on left side removed. It was a large, deep tumor, and I don't think the doctors felt extremely positive about it.
Now, after his 4 year clean scan, which is AWESOME, I find out they plan on stopping the PET CT scans after next year, and I'm shaken. I understand with my head and I have a year to become comfortable with this, but I would like input from others. I know 5 years is a big deal, but I also recognize the capriciousness of melanoma.
We discovered melanoma only after lymph nodes were large enough to be readily felt, and it seemed sudden. I don't EXPECT melanoma, but I don't want to take a chance on finding something out too late.
I'm coming here again because I have always received comfort when needed, and solid information and advice.
Thanks,
Betsy

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ncdaniel's picture
Replies 2
Last reply 4/18/2013 - 11:25am
Replies by: POW, Tina D

My wife is experiencing memory loss since she had one dose of Yervoy. She previously had IL2 and seemed okay with that maybe slight memory loss. But this time it is much worse. She many time cannot remember the name of something or how many pills to take and sometimes is just slightly confused. She has been on 80mg of prednisone ( now 30mg)  and has had only one dose of Yervoy before colitis started and was treated with 100 mg  prednisone. Also was treated with Remicade (one dose) in the last month. She is scheduled to have scans in three weeks and a brain MRI done. I am just wondering what other experienced did this clear up or is there concern of brain METS.

Daniel 

Trust in God - Live one day at a time

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NYKaren's picture
Replies 1
Last reply 4/21/2013 - 1:44pm
Replies by: aldakota22

Hey Al,
We're missing you 'round here.
Hope you're okay
Karen

Don't Stop Believing

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Charlie S's picture
Replies 31
Last reply 4/18/2013 - 11:28pm

For many reasons when one of our own fall on challenging times, be it out fear or apprehension, it is easy to draw back and say nothing.

So, I want to say something. 

YOU GO DIAN !

Yes, it sucketh from great heights that post IL2 your body imploded.  Yes it sucks that your body had done so well in tolerance of the offense, but stuff happens and you know it.  You have overcame more than this in the past which is why you are strong and will overcome, adapt and conquer the new challenges ahead

Your conjoined alter ego, Cigar Bob , has stood beside you and with you.  The two of you are as one.

In a better day on this board, many of us physically met, in person, the people we posted to, and chatted with.  To my delight, Dian and Bob were two of them.

I don't do facebook but I do MPIP and by golly Dian and Bob, know we are behind you.

Sooooooooooo, come on MPIP'ers, step up, pound your chest and shout to the skies two words..............GO DIAN.

If we shout loud enough, she and Bob will hear us.

Oh yeah, be sure and post it too !

Keep going you two.

 

Cheers,

Charlie S

 

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#next_pages_container { width: 5px; hight: 5px; position: absolute; top: -100px; left: -100px; z-index: 2147483647 !important; }
Please take alook at virginmoneygiving.com/lorimurdock and my facebook page Lori Sails Uk to read about my fund raising sail around the Uk to raise money for three charities that have helped me so much during the course of my illness, just hope I remain well enough to complete my adventure. Please feel free to share the poster on the facebook page and if you would like a hard copy I would be happy to provide one if an address is given. Thanks Lori x

 

 

 

 
 

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keep sailing!

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awillett1991's picture
Replies 10
Last reply 4/18/2013 - 11:49pm

After almost a year on/off Zel I'm off again, having failed it definitely once, I think twice, and also Ipi. CT was clear, 2 brain mets are stable after SRS in Nov with one showing 1 mm edema they "think" UGH!! Cardiac tumor is thriving again but blessed to feel good, have normal heart function, and no growth into the heart muscle still, after a year. Also blessed to have an opening into Merck PD1 trial if I can qualify. Fingers crossed, prayers going up, I will be a lab rat hooked up to a drip, 3 weeks from now. Have another brain MRI next wk which must be stable. Every day is a gift!!

Amy

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DianaB's picture
Replies 4
Last reply 4/16/2013 - 10:14pm
Replies by: Charlie S, Janner, DianaB

Hi,

My 25-year old daughter who has a history of tanning and tanning booths, went in approximately one year ago to have a new mole on the back of her calf checked. The Dr. said it didn't need to be biopsied after viewing it through a lens.
Several weeks ago, which is one year later, she decided to have it looked at again by a different Dr., as it was changing. It was growing and had a ring around it. Unfortunately, the Dr. she saw is 83 years old and according to the Pathology report, he botched the shave biopsy.
The report reads, Diagnosis - Portion of Melanocytic Neoplasm with Unusual Features. Note: I cannot render a precise diagnosis as the biopsy is extremely superficial and narrow and important characteristics such as overall breadth and symmetry cannot be identified. I slightly favor these changes represent an irritated and unusual nevus. Nevertheless, there is confluence of junctional melanocytes and a portion of a melanoma could produce such findings. Given this, I recommend the lesion be excised in its entirety to evaluate important characteristics such as overall symmetry, breadth and other morphologic characteristics of the melanocytic neoplasm. Drs. xxxx and xxxx agree.
Microscopic Description: Sections contain a narrow and superficial shave biopsy. There is a proliferation of melanocytes at the dermal-epidermal junction which is slightly confluent. There are nests of similar-appearing cells in the underlying dermis where there is stromal alteration including fibrosis. Cytologically the melanocytes and nevus cells contain slight nuclear hyperchromasia.
Obviously, I am just sick about this. She has an appointment with yet another Dr. tomorrow to have the 2nd recommended biopsy done. Can anyone help me interpret this pathology report? Thanks so much, Diana

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_Paul_'s picture
Replies 3
Last reply 4/17/2013 - 10:42am
Replies by: _Paul_, hbecker, Janner

After less than a year and completing the GVAX clinical trial at Hopkins my melanoma came back. It recurred at the site of the primary. I have a hopefully better surgeon lined up this time to performt the WLE at the apex of my scalp. He plans to do a skin graft from the get go, unlike the first time around when I was sent home with an open wound, torn apart sutures and all.

I just had a full set of scans done last week, and thank God there is no other evidence of disease. My oncologist said I "dodged a bullet".

I have a question for all you knowledgeable warriors about staging. According to my doc I have been upgraded from a 3a to the a 3c because of the recurrence. But I don't think that is technically correct. According to www.cancer.org on Stage III:

 

One of the following applies:

T1b to T4b, N1b or N2b, M0: The melanoma can be of any thickness and is ulcerated. It has spread to 1 to 3 lymph nodes near the affected skin area. The nodes are enlarged because of the melanoma. There is no distant spread.

T1b to T4b, N2c, M0: The melanoma can be of any thickness and is ulcerated. It has spread to small areas of nearby skin or lymphatic channels around the original tumor, but the nodes do not contain melanoma. There is no distant spread.

Any T, N3, M0: The melanoma can be of any thickness and may or may not be ulcerated. It has spread to 4 or more nearby lymph nodes, OR to nearby lymph nodes that are clumped together, OR it has spread to nearby skin or lymphatic channels around the original tumor and to nearby lymph nodes. The nodes are enlarged because of the melanoma. There is no distant spread.

The first two cases don't apply because my primary was not ulcerated. It would not appeat the last case applies as well since my nodes are *not* enlarged because of the melanoma. When my SNB was performed all that was found was a micromet in one node, hence the original diagnosis of 3a. Do you think I am a 3c or not?

Thanks - Paul

To exist is beyond fantastic.

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