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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emilypen's picture
Replies 1
Last reply 4/5/2011 - 8:17pm
Replies by: Terra

Hi All,

What a journey the last few months have been. My husband has been Stage IV since June 2010 and after being randomized to chemo on the Roche PLX 4032 trial he started on the MEk & PI3K trial in Sept. 10.

Six months later and 15% reduction of the tumours he had a bad reaction to the drug ( a all over body rash) and was taken off the study for 3 weeks. Unfortunately during that 3 weeks one of the tumours in his back decided to start growing again and this time grew right towards his spinal cord. We found out it had only grown 14% which meant he could have gone back on the study but because it got so close to his spine, he needed emergency surgery. The study does not allow you back on if you have an "event". Talk about frustrating!

Now 3 weeks after surgery he is almost finished with 4 treatments of stereotactic radiation ( to take care of any remaining tumour near his spine) and he has been allowed to crossover to the PLX 4032 side of the study through the expanded access program. Our Oncologist is hoping it will work, there are some concerns because he was on the Mek drug that it might not.

His plan is keep my hubby on PLX until it fails and then start Ipi (Yervoy) if there is not anything else better at that time. In Canada Ipi is still on trials as our FDA has not approved it yet.

Anyone else go from a Mek to a Braf inhibitor?

I'm also wondering how long those of you on PLX have been taking the drug with success? And has anyone gone from Braf inhibitor to Ipi? Outcomes?

Thanks so much,

Emily

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TracyLee's picture
Replies 7
Last reply 4/21/2011 - 3:37am
Replies by: nicoli, Anonymous, Carol Taylor, TracyLee, Carmon in NM, Sharyn, Terra

Hello,

I have a scalp graft that was successful last May. Since then I've had 2 recurrences and 2 pinch graft surgeries. I'm now having a scalp resection to cover the bald spot, as I need radiation. I've also got nodes back in my neck, despite a neck dissection last June.

I'm so discouraged! For whatever reason, this surgery next Monday is bothering me more than any of the others, including the original graft which was no fun whatsoever. I'll have 2 surgeons on Monday: plastic surgeon working on my scalp, and my regular oncologist doing bumps under my scalp and the neck nodes.

Everything has spiraled down so quickly that I can barely breathe. I'm going today for an ultrasound guided fine needle biopsy of my neck (to confirm what they all suspect). I can't find much info about what to expect on the ultrasound, other than it will take 2 hours.

Has anyone done radiation after head grafts? What do I need to do to prepare myself? I work full time, and shudder at the time I'm going to miss from work once I start radiation.

I'm still Stage III, so I guess that is a ray of sunshine in a gloomy outlook.

Thanks,

TracyLee

Never will I leave you, never will I forsake you. Hebrews 13:5 Cast all your anxiety on Him, because He cares. 1 Peter 5:7 Stage IV 5/16/11 Ipi - 4 rounds May - July 2011 BRAF expanded access trial 8/8/11

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Peter L's picture
Replies 8
Last reply 4/5/2011 - 7:05pm

Hey Everyone....

generally speaking, do melanoma primaries have pigment.  We noticed a small pencil-eraser-sized non-pigmented 'lesion' near the temple by the hairline last night and I don't know to be concerned or not.  She sees the derm in a few weeks, but sometimes a few weeks can be a really long time.  Do melanomas tend to be pigmented ?

Thanks to all

 

peter

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Hey Everyone....

generally speaking, do melanoma primaries have pigment.  We noticed a small pencil-eraser-sized non-pigmented 'lesion' near the temple by the hairline last night and I don't know to be concerned or not.  She sees the derm in a few weeks, but sometimes a few weeks can be a really long time.  Do melanomas tend to be pigmented ?

Thanks to all

 

peter

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archer's picture
Replies 17
Last reply 4/5/2011 - 10:34am

I admit my human frailties are in this area.  I have never been comfortable doing this but I will learn if it will help my wife.

Only been married less than a year, her age 55.  She is the bubbliest, strongest female I have ever met.  We exercise daily and eat 90%  healthy.

The diagnosis this past Thursday has turned our world upside down, (more so it seems for me than her)  She has the best attitude and there isn't any

pity party going on.

 

I can't understand how she got to this place.  On Jan. 15, 2011, she felt a lump in her armpit.  Went to family doc, he felt it said it didn't feel like cancer

and thought is was an infection in the lymph.  Medicine for 10 days. Nothing changed.  Then on to a surgeon who immediately ordered an ultrsound

and then they did a biopsy the same day.  This biopsy was taken to the local lab and then transferred to Mayo Clinic.  After waiting for 3 weeks, Mayo

told us they couldn't find anything and asked for more tissue.  The surgeon suggested trying to remove the lump which she did.  She said it was the size

of a golf ball.  She also said it was watery with some solids and no tentacles growing out of it.  That lump was again sent to Mayo Clinic and then we 

found out it was sent from Mayo to the Massachusetts General Hospital.  So, again after 3 weeks, they tell us that it is a spindle cell that they feel is

caused by a metastasized melanoma.  She never goes in the sun and there aren't any detected on her skin.  We are really confused and scared.

 

We are to meet with an oncologist this week and see from there.  I am sure they want to make sure she does not have anymore cancer present in

her body.  That is what we are hoping for.

So, I hate that I have to be writing this story but for me, it seems to help to do this... Sort of a therapy.

One question, I am wondering why it took 3 labs, different pathologists and 6 weeks to come up with this diagnosis.  Does that make sense to anyone?

Is it a good idea at this stage to ask for a second opinion?

Thanks for listening.  We are not sure what to do....

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Terra's picture
Replies 2
Last reply 4/4/2011 - 10:55pm
Replies by: Sharyn, washoegal

Hi - Derek's brain MRI done last week - before he started the P13 K and MEK combo trial - results were:

- a tiny dot (2 - 3 mm in diameter) of enhancement is noted centrally in the pons as well as on the coronal and sagittal reconstructions

- there is no clear evidence of edems but a small region of blooming noted in this are on the gradient echo sequence - could represent a small capillary telangiectasia but a metastic deposit cannot be ruled out - follow up is needed

They wetnt ahead and started his treatment.  My question is I have another MRI of the head done in Aug 2010 at another cancer centre should I ask them to compare the two to see if these were there or just wait for follow up - I am a little afraid to wait and afraid to know if these are mets to the brain

I woulod have thought they would have thought to compare them already - need help

 

Terra

 

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Terra's picture
Replies 2
Last reply 9/30/2011 - 2:41am
Replies by: Anonymous, MichaelFL

Hi,

Derek's scans show extensive spreading to the lung, muscle, bone, kidney, and innumerable mets in the liver.  This has really scared us.  He started this trial last Thursday at PMH.  

Is there anyone enrolled or previously enrolled in this phase 1b trial?  If so, could you please share your experiences and hopefully success?

Terra

 

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Replies by: EricNJill, Anonymous, premedy

This weekend Eric had a new tumor pop up in his groin.  The other tumors that were in/on his leg are nearly gone so I am very confused by this.  He also had increased tumors in and around the heart in his scan on 03/18/11.  We weren't worrying too much about them because of the progress in his leg but now with this new tumor that is almost the size of a lemon I am shocked.  Has anyone hear of this on BRAF/MEK?

[URL=http://www.mediafire.com/imageview.php?quickkey=r1f2584j0td1d0b&thumb=5][IMG]http://www.mediafire.com/imgbnc.php/b6d73b5f3bf97007c89ad36df88bee797c5715aaede9a84a6866f02e2b7076592g.jpg[/IMG][/URL]

Picture of the new growth.

JillNEric in OH

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Well its been over a year since I last posted on here, so I wanted to touch base and meet the new folks and look for my old survivor friends and caretakers that I grew to love and hug :)

Update on myself, June will be my 5 years NED/Cancer free milestone from a stage IV diagnosis.

For those of you that dont know me yet, my melanoma was in both lungs, my liver, a tumor wrapped around my espohogus, all the lymph nodes in my chest were filled with melanoma and I had 2 hot spots on 2 bones that had exterior beginnings of melanoma penetration.....

I was given 6-9 months to live................ underwent High Dose IL-2 (interleukin-2) managed to get 56 bags in....and I was as blessed as can be, a complete responder after 9 months of in and out of ICU doing the IL-2.

I hope my story will offer those of you newly diagnosed the wonderful word HOPE.... and to all my survivor friends and caretakers a huge hug and hello and hoping as always life is holding all the good days one can muster after being dealt this life altering disease and experience.

I plan to try and sign on from time to time, to keep some spirits high and to offer a shoulder or high five when the celebrations come along!

Hugs to you all~

JanefromMaine.

(used to be) JanefromMaineinNC ;)

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love4life's picture
Replies 12
Last reply 4/10/2011 - 10:28pm

Hello All,

I've been browsing the message boards here for around a year and have finally gotten up the courage to say hi.  I have been diagnosed with Stage IV MM with metastasis to the brain and lung.  I am currently NED and am finishing up my year of Interferon in the next 6 weeks.  I am curious if anyone out there has had brain mets and what type of treatment you were offered?  I am very hopeful that the Interferon works and that I will remain NED for many years to come but am wondering what other treatments are available for someone like me.  I am a young mom and am willing to try anything to keep this monster from popping up again. 

 

Thanks!

Natalie

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jenniperry's picture
Replies 23
Last reply 4/5/2011 - 10:16pm

Miss you baby!  I can't believe what melanoma does to someone.  I was so angry at the cancer in your body when you died.  It's so unreal how bad it can get.  My heart breaks for those who are suffering this disease or are caregivers of those suffering.

Cherish every day you have.

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KevinM's picture
Replies 14
Last reply 4/5/2011 - 11:23am

I can't believe that it has been 5 years since the surgery to remove the axillary lymph node that turned out to be melanoma. I have an unknown primary and after a full lymph node dissection, the one lymph node (2/3rds of a golf ball size) was the only one found positive for melanoma. I did 3 rounds of bio-chem in a clinical trial which was very challenging.......but I am still glad I chose this route.

To help celebrate my 5th anniversary, I am running The Boston Marathon for the 11th time and second with the "Running for Cover" Melanoma Foundation of NE marathon team. This will be my 19th marathon and 7th since my diagnosis. Running has certainly helped me get through the past 5 years and it has also provided an avenue to promote melanoma prevention and early detection. I feel great that my message has changed the mindset of many friends, family and colleagues.

This  year I am running in honor of my healthcare team at Beth Israel...but please know I always run with those of you engaged in the battle with melanoma in my heart.

My best to you all!!

Kevin

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Leigh's picture
Replies 43
Last reply 4/19/2011 - 9:28am

Hi all,

I would really appreciate any help/experience as I am in a complete panic.  I have been sent CT results to my home address without my surgeon being notified and he does not want to discuss them with me over the phone over the weekend without seeing them himself.  I can see his point but I feel sick to my stomach and need to find information quickly.

My background is that I was diagnosed early December with a 0.83mm, non ulcerated, no mitoses, Clarkes IV melanoma, no lymphvasc invasion, on my foot, WLE performed and SLNB was negative.  About 2 weeks after the operation I started feeling discomfort in my leg which seemed consistent with lymphatic obstruction, achy feeling with upper groin discomfort.  My leg was 3cm larger than the other and I did have an infection in the wound site so that was that.

The upper groin ache has continued though with no enlargement on measurements and ache went to deeper in my pelvis on that side (not terrible just obvious discomfort).  The surgeon felt this was related to surgery and didn't advise tests.

I sought a second opinion about the tests and we went ahead with a CT on Friday.  I have just got the results in the mail today (Sunday) as hadn't checked the letter box.  I am in a panic about what these mean - my GP says it could just be a red herring but I am not sure as it is the lymph nodes that are changed.

Please if anybody has had this happen to them and it has all turned out fine write back!  The comment is "a few small lymph nodes are identified in the groin, retroperitoneum and porta hepatis.  These are not involved by size criteria, however consideration for PET scan should be considered"  The nodes are 11m, 10mm and otherwise less than 10mm.  (Incidentally they found "most likely a haemangioma" in my liver).   Could this be a red herring, could it be nothing.  It seems unbelievable as the sentinel lymph node was negative and the surgeon was very confident that he got the correct one.

I have an almost 3 year old and 6 month old baby and I cant bear to think about what this might mean for our family.

 

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Hello, If you are wondering why there seems to be so little money spent on melanoma research see the article "Hitting Hard to Treat Cancers" at 
 
The article starts on page 20. Possibly the best answer why melanoma research money is so low can be found in the last paragraph on page 21. Also in this article is about targeting cancer cells for melanoma, very interesting.
 
Best wishes,
Gene 
Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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I am a melanoma survivor.  Yesterday I met with the folks at MRF and they encouraged me to share a resource I created with all of you!  I hope it brings you all as much support and inspiration as it has to me and many others! www.treatmentdiaries.com

 

TreatmentDiaries.com is a unique online resource, providing REAL information exchange between people coping with or caring for anyone with a chronic illness or rare disease. This virtual support group is free and always available; offering a safe place to anonymously keep multiple diaries of your daily journey, across more than one condition - either privately or shared out with others, allowing for shared coping strategies, support for others and the exchange of information.

TreatmentDiaries.com is dedicated to the needs of ALL types of users including; individual patients, caregivers, family members and advocates. We promote the importance of keeping a diary of life changing experiences and the significance of engaging in behaviors and activities which promote health, mental wellness and the self-management of chronic conditions.

TreatmentDiaries.com was inspired by REAL stories of people struggling with chronic conditions and in desperate need of support. Our goal is to connect those facing similar circumstances and facilitate the sharing of valuable information and support at every stage of an illness through wellness! Finding and sharing genuine information and experiences is a powerful thing. Our goal is to give you the tool to do just that.  

Connect...Share and Inspire!

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