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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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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juless1's picture
Replies 11
Last reply 4/18/2013 - 3:20pm
Replies by: Anonymous, audgator, juless1, kylez, MaryD, Janner, Tim--MRF

Being new to the board...and new to the horrible world of melanoma....I read with interest the various posts...

But I have to say....a majority of it is like another language!  Abbreviations, treatments...etc etc....

I find myself going to another screen and googling what things mean!  Need a glossary of melanoma talk..

and I thought I was confused before....yikes!

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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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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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randallgford's picture
Replies 7
Last reply 4/17/2013 - 9:46pm

My husband is on day 10 of 15 days of WBR for brain mets. He is stage 4 with several mets to lung, many on abdmonmen, two small ones on liver, and 14 small on brain. He started Yervoy, has done two infusions. No real side effects, worked daily, ate well, no symptoms beside cough,  no weight loss.

Since WBR he is a different person. No appetite, lost 20+ lbs in two weeks (even tho he is eating, albeit not as much) exhausted , extremely weak.

It is scary, he was thin to begin with. We saw Onc a week ago and see him again tomorrow after repeat of chest/and CT today due to more coughing to see

what is happening.  He is pale, has black bruises not healing, he has just gone down so far so fast. Is it possible its the radiation and he will

bounce back. . PS. Onc started him on zelboraf last tuesday after finding out he is braf positive, but wants to assess tumors, i think to see if he

will go back to Yervoy or not.I know i will find out more tomorrow but I am always curious for other comments from this community

 

Thanks, Vicki

Never give up!

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mark d's picture
Replies 9
Last reply 4/17/2013 - 11:53am
Replies by: Mandi0280, mark d, DebbieH, Gene_S, washoegal, Anonymous

I had... Key word HAD and keeping it that way.. I believe the best is to have a positive outlook.. I know I won't live for ever but the time I do have is going to be enjoyable. I had a nodular melanoma on my earlobe with one sentinel positive. I had a wide excision with 21 nodes taken out all negative.. I will be starting interferon in a month or so as protocol. I know everyone is different and different situations but the best cure is POSITIVITY up until the end whenever that may be.. I blew threw the greif phases and figured that every day life is a 50/50 chance.. Hell, Korea might get me before the cancer.. HA! In your face cancer!!!. Everyone who has this nasty keep rolling thru life and enjoy it no matter how difficult it may get.. Everyone who has lost someone, enjoy what you had with them and their eternal memories.. To everyone thank you all for your ongoing info and support to each other.. We all ROCK!!!!!

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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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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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eric w's picture
Replies 5
Last reply 4/16/2013 - 1:38pm
Replies by: Anonymous, rjack, eric w, Janner

Hi all,

 

My wife had her first dose of Yervoy last week. She currently has multple subcentimeter mets on her lungs...so her tumor load is currently low....she is BRAF negative...my question is for the people who have responded well to Yervoy are you BRAF negative or postive...just curious if there is any type of relationship there..thanks and Happy Easter everyone....

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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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Janner's picture
Replies 19
Last reply 4/16/2013 - 12:25pm

Since this site is a little skewed towards those actively fighting disease and the newly diagnosed, I think it's a good idea to post anniversaries like this to help give a bit of perspective.  21 years ago, I had a stage IA lesion removed.  .58mm/Clark II/ 1 mitosis.  In today's staging, that is now stage IB.  Since then, it's been determined that I have a genetic defect that gave me a 76% lifetime risk of melanoma.  I've also had two other primaries (in situ, .88mm/Clark III/ 1 mitosis) removed 12 and 11 years ago respectively.  But I'm still here, still NED 21 years later.  I was 29 when originally diagnosed and you can do the math but I'm a little older now.  It's hard to remember life prior to melanoma - melanoma is a part of who I am and what I do now.  But I refuse to let melanoma define me and conquer me!

Best wishes to all with this disease!

Janner

http://www.MelanomaResources.info

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thrashter's picture
Replies 11
Last reply 4/16/2013 - 6:55am
Replies by: Anonymous, kylez, Tina D, Phil S

Well today was mixed met with Oncologist and after removing another (7) clump of lymph nodes back to more biochemo sessions. Did (3) sessions already. She doesn't think radiation at lymph node area is much worth doing but will let me visit with radiation oncologist after next two bio sessions. This gets kinda old. 

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Erinlisay38's picture
Replies 10
Last reply 4/16/2013 - 1:08am

Hi I'm on bms pd1 trial in Boston just had my first 8 week scan and its pretty bad news all tumors have progressed and new tumors have popped up ;( I had to sign a new consent to stay on the trial even tho I know the tumors have all grown but I only can get 2 more treatments then another scan in 6 weeks if tumors continue to grow I'm off the trial Not sure what's next for me as i have already failed yervoy. I am trying to stay positive but it's getting harder and harder as I feel I have failed 2 of the best treatments out there ... Scared

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