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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mbaelaporte's picture
Replies 21
Last reply 8/2/2011 - 1:39pm

I'm new here and want to thank you all for your participation

 

I am five weeks plus into PLX - B Raf trial and from the get go have had very impressive results regarding reduction in tumor size & evidence - tumors very obvious to eye & touch.  My first scans will be in about three weeks since beginning trial and I will post radiology reports.

 

Realizing how new this therapy is and how few patients are involved  with so few oncologists I'm hoping to share / study info on side effects and experiences  with a broader base than even my caregivers might maintain.

 

As I've said tumor reduction has been nothing short of miraculous

other effects:  sensitive warm scalp;

                          a couple bouts of excruciating skin burning pain chin/ears to eye brows ( three days in row about three 

                          weeks ago lasting about 30 minutes per episode ) not sure how much was medication driven or    photo 

                          sensitivity (increased w/ medication) but I had been vigilant in prevention of exposure;

                          increase in actinic keratosis lesions and ones present when trial began more amplified - both my 

                          oncologist & dermotologist who works w/ her think it fine to treat these lesions thinking they are 

                          probably considering combo liquid nitrogen & efudex - Anyone have lesions treated while on B Raf

                          drugs??

                          also just now experiencing very sensitive feelings on the bottom of my feet

 

am most interested in your experiences or information you have garnered

all the best to you, Salud john

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mollysue's picture
Replies 19
Last reply 7/9/2011 - 9:23am

I was just denied for insurance due to a stage 1 melanoma from 3 yrs ago. Mine was very thin. I think it was 1a  and the thinnest the doctor had ever seen. I would like to send a letter to the insurance company as I don't think I am a huge risk. I did have a lymph node taken out due to the doctor being able to "feel one" in my groin. The lymph node was of normal size and negative. The surgeon who took it out said they could feel it because I am thin and in shape. She also stated lymph nodes can enlarge as the bodies natural response to having been insulted.- as in an excision close by. Both of these diagnosis have blocked me from purchasing insurance. Any suggestions as to facts I could use in my letter?

Thanks,

mollysue

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Rebecca and Bob's picture
Replies 3
Last reply 7/11/2011 - 7:13am
Replies by: lhaley, Carol Taylor, Lisa13

 

My husband is going in for scans next week, does the anxiety ever stop? Praying for NED to continue. It will be 2 years since his last surgery. 4 years with all of this so we consider ourselves lucky.

We would like to continue with the bear attack story for now :) when it comes to our 5 and 7 year old. We can always tell the real story when we are old and gray.

 

Rebecca

 

Believe

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StevenK's picture
Replies 9
Last reply 7/12/2011 - 2:58pm

There's a dark spot appearing in my excision scar. It's not a scab and it is really scaring me because it seems to be exactly where the orginal lesion was. The wide excision came back with no signs of mm, so how is this possible? Could mm be back just three weeks later? I called my doctor, but he went home at noon. Have to wait until Monday. Is there something else it could be? Blood beneath the skin? Has anyone else had dark spots in their excision scar that scared them?

Thanks in advance for your reply,

Steve

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Lauri England's picture
Replies 2
Last reply 7/9/2011 - 12:36am
Replies by: FormerCaregiver, akls

I went to the Onc appt yesterday and she felt a bebbie size lump under my right arm. Same arm as melanoma was in originally.  It is hard and I cant tell if it would hurt or not because my underarm is totally numb from lymph node removal a year ago.  The doctor said we can just keep cutting you or we can wait and see.  I am 9 months into interferon and have had no scans.  I have had 3 more moles removed and another lymph node biopsy and all were benign.  Not only is this very costly co pays but I am not sure I want to be cut anymore for a while.  Am I being over cautious?  The doctor felt this one and did not seem to concerned, but she did tell me about it.  What would you do?  I am going to have a CT scan in October right after my interferon treatments are done.  I have also been having problems with my bladder.  I will just suddenly start to urinate in my pants and cant stop it.  I dont even feel the urge to go to the bathroom when this happens.  Has anyone else experienced this?  I am going to be seeing a uralogist in the next couple weeks. 

Don't sweat the small stuff. There are bigger fish to fry!

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Cid FLA's picture
Replies 5
Last reply 7/8/2011 - 3:22pm

Hi All,

It's my first time back since registration was required........previously known as just "Cid".

I'm stage IIIb for 6 yrs. now and recently a "freckle" on my retina was detected via a routine eye exam with retina photography. I am to go back in 3 mos. for another look.

Apparently this is one potential indicator of ocular mel though not an uncommon finding. My question is "has anyone heard of cutaneous mel metastises to the eye?".

Also, for anyone with ocular mel...........how did it start? how are you now? how were you treated?

Nice to see some familiar names and all the new ones remind me of what a valuable resource we have here.

My best to you all............Cid

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Nicky's picture
Replies 6
Last reply 7/8/2011 - 9:09pm

Went back to outpatients at the hospital today to get my results after a wide excision for melanoma in situ.  Yippee all clear margins!!! so happy today.  This is my third melanoma primary over 11 years.  Currently, Stage III from a lymph node dissection in 2001 with one node with melanoma followed by radiation.  5 years later a level 3 desmoplastic melanoma on arm, following by radiation and as of last week a melanoma in situ on back, all clear with the wide excision.  Yeh, I just love giving this disease a kick, three strikes and you are OUT melanoma.

The marketing department at the hospital wanted me to assist them on a television interview to promote new machines in detecting malignant moles and a mobile phone application for people in remote areas which is on an earlier post.  Anyway the professor now wants to put me on a trial,DNA testing and checking over all my moles with this machine.  At last I feel I'm in the best hands and that there is no room for misdiagnosis.

So as far as I'm concerned melanoma is STRUCK OFF and hit out of the stadium.

 

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Carol Taylor's picture
Replies 3
Last reply 7/8/2011 - 1:11pm
Replies by: Carol Taylor, nicoli, Nicky

About a week ago I heard the following American Academy of Dermatology PSA (jingle style) on the RADIO, got excited and had to contact both the radio station and the AAD to find it. Heard from AAD today with the link and told to share it all over the place:

http://www.youtube.com/watch?v=LW-YHFsxkqE&feature=related   (According to AAD this actually came out in 2008)

So, she also sent the link to their latest PSA:

http://www.youtube.com/watch?v=vxDG2VuBAtU

Spread and enjoy.

Grace and peace,

Carol

Life's short. Eat dessert first. http://letsgivethanks.blogspot.com/2011/03/let-sun-shine.html http://www.facebook.com/MelanomaPrayerCenter http://www.facebook.com/melanomagriefchapel (This blog post contains links to my story).

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Replies by: Dynasysman, MariaH

Visited with surgeon today.  For anyone in the expanded Philadelphia area, my surgeon, Giogios Karakousis at Penn, is totally a rock star. Brilliant, great bedside manner, excellent hands as a surgeon. The whole package...

I digress.  We now have a plan of attack:

Next Thursday:  PET-CT to check for mets outside the left posterior neck region

July 18:  Meet with surgeon to plan next steps.  If no mets outside region (or maybe only 1-2 small ones), we remove tumor later that week.  If more growth, we go directly to meeting with ONC and plan for some kind of systemic therapy.

When we found reference to the tumor on the March PET-CT, it was noted as 8mm.  Two days ago, on ultrasound, they estimated 1cm.  This is a bit like comparing apples and oranges, but 25% growth in four months isn't all that fast...

I have a plan, I have hope, and I am making a stronger community of support for myself.  Thanks for reading, writing, and hoping along with me.

Never give up. Never give up. Never, never, never, never, never give up. WInston Churchill It ain't over 'til it's over. Yogi Berra My 20th anniversary is only 9+ years away. Personally, I'm thinking champagne & oysters. Now I just have to get there

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Just got back from Don's appointment with Dr. Lawrence. I just spent 1/2 hour writing out specifics of his response only to have the board eat it, so I am going to do this more abridged this time. wink

Dr. Lawrence called it "the best response to chemotherapy I've ever seen". He said it was the kind of response he has seen only with BRAF inhibitors.

Here's the down-n-dirty version of the results:

LDH: Down again to 268 from 388 last week. 

Lungs: Down from innumerable nodules up to 1cm in size to 4 (four) nodules: 4mm, 3mm, 2mm and 2mm respectively.

Tumor under right arm: Down from 10.4cm X 10.2cm to 2.7cm X 2.2cm. 2 small tumors in right chest wall same or slightly smaller at 6mm and 3mm respectively.

Liver: Still have innumerable lesions, but they are better defined and smaller in size. Largest lesion came down from 5.2cm to 2.6cm in size.

Bones: Results a little more hazy as there were mentions of "new" lesions that Dr. Lawrence doesn't actually think are new. (I think he's right, as some of the "new" ones were mentioned in an MRI of Don's spine down at Brigham and Women's hospital done in May) However, the fact that Don is taking 25% of the pain medicine he was 5 weeks ago certainly points to some improvement in this area. There was mention that at least 2 lesions seen appeared to be responding to  treatment. 

Brain: Scan clean for brain; shows some signs of possible small bone lesions in skull (not new).

 

Plan of action for now is to continue chemo for another cycle and will re-evaluate in a few weeks. Plan B (when we get there) was proposed to be the Compassionate Use PLX4032 trial. Dr. Lawrence wants to have Don sign paperwork now so they can send the tissue sample to Roche for testing (they require testing it themselves instead of taking result from previous test...and we know it takes a couple of weeks for results).

 

I know I should be thrilled with the results--and I am--but I must admit that I was hoping there would be less lesions in his liver. 

Michelle, wife of Don

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Anonymous's picture
Anonymous
Replies 10
Last reply 7/24/2011 - 9:52pm
Replies by: Gene_S, Anonymous, dian in spokane, teach, lhaley

Hi

My doctor is willing to have a Vitamin D test done so that I will know if I am  Vit D deficient.

My blood tests are done at Quest because the blood tests are cheaper.

Can someone tell be the name of the blood test for testing Vitamin D . Quest had 3 test:

1.Vitamin D 25 test

2. Vitamin D125 test

3. VitaminD. 25 & 125  combotest

 

Any info you can give me about  the Vitamin D test, you have had would be very helpful.

 

Thanks,

william

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I was just diagnosed a couple of weeks ago and staged at T1b, with a Breslow depth of 0.56 mm.

The day I saw the Dermatologist (after waiting 4 months to get in) and got a formal diagnosis of melanoma, he did an excisional biopsy the same day. Several weeks later I had a wider margin excised and a sentinel node biopsy performed. Both the margins and the lymph node came back negative.

So what happens next? Do they typically suggest you have chemo anyways? Or am I now "a survivor"?

I do know I am required to visit the dermatologist every three months for several years. But other than that I'm wondering if further treatment is typically recommended at this stage?

Thanks In Advance,

Steve

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CLPrice31's picture
Replies 16
Last reply 7/19/2011 - 6:32pm

After two fairly invasive surgeries since January of 2011, I have had a love/hate relationship with my new body. There's no hiding these battle wounds. A part of me knows that I should be proud of my scars, they show that I am a fighter. Another part of me just wants to be a 24 year old girl who hasn't experienced a true life crisis...

Back in April when I was really suffering from some self esteem issues, a fellow melanoma warrior sent me this great quote that I thought others might appreciate reading:

"On the girl's brown legs there were many small white scars. I was thinking, Do those scars cover the whole of you, like the stars and the moons on your dress? I thought that would be pretty too, and I ask you right here please to agree with me that a scar is never ugly. That is what the scar makers want us to think. But you and I, we must make an agreement to defy them. We must see all scars as beauty. Okay? This will be our secret. Because take it from me, a scar does not form on the dying. A scar means, I survived." -from Little Bee by Chris Cleave

Now, even when people make comments about my scars, I remind myself of this quote. A scar does not form on a dead body. My body forms scars. I am surviving. That makes accepting my new body a whole lot easier...

I hope this will help someone else accept their battle wounds, too.

"The odds are that the...the odds mean crap. So people should face it, and they should fight." ~Grey's Anatomy. http://adventurewithmelanoma.blogspot.com

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emilypen's picture
Replies 5
Last reply 7/11/2011 - 9:12pm
Replies by: Terra, CLPrice31, lhaley

Hey All,

It's been a while since i've posted. It's been a rough month or so.

My hubby failed of the braf inhibitor he was on and we've been waiting the required 28 days so he can start IPI.

During that month tumours grew quite a bit, a few new ones popped up. He had to have some radiation to his jaw to control a lesion there and hopefully stop a soft tissue tumour that was pushing around a few teeth.

Plus we moved home to Canada and found out we're pregnant! 

So today is the day! Can't wait to actually be "doing" something instead of waiting.

Curious as to what the fasted is that anyone on IPI has seen improvement? 

 

thanks,

Em

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nickmac56's picture
Replies 6
Last reply 7/9/2011 - 2:17pm

We are down to very few options for my wife (Stage V, brain involvement, lung and skin mets, internal organ mets likely) and this seems a pretty low impact, not much downside option. Because of her recent brain surgery and seizures and the fact she is on so many anti-seizure meds and steroids the onc is adamantly opposed for the time being to put her on IL-2 - too toxic. All the places I've contacted about clinical trials - especially the ones doing TIL for HLA-2 mutation - have said no thanks due to her seizure history, don't want to screw up their trial results I suppose. 

I'm curious for those who have tried Temodar if there has been any hair loss? It seems a low occurrence side effect - but she is already not happy about the hair loss from her Cyberknife treatment, even though she looks great in her wig, you woudn't even know.

From what I've read about chemo treatments it appears if it has an impact, the usual pattern is some reduction in tumors for a period of time, then continued progression - so you are just buying some time at a not bad reduction in quality of life - so a pretty good trade off. I haven't found much about long term durable remissions with chemo or Temodar specifically. Any evidence out there I am unaware of about long term success? She isn't doing any combo treatment yet involving multiple drugs or chemo/immuno drugs - again related to toxicity and her particlar situation with the drugs she is on and seizure history. 

 

Nick

Her motto: "Don't wait for the storm to pass, love dancing in the rain".

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