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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DeniseK's picture
Replies 13
Last reply 7/10/2011 - 7:15am

Hi All,

I had a couple questions about tests that should be done to determine if the Melanoma has spread.  At this point I've had my surgery, SLN which was negative.  I just had PET Scan and Brain MRI and they came back clear.  I'm going to see specialists at the Northern California Melaonoma Center in San Francisco either this Wednesday or next.  But I have yet to see an oncologist.  My tumor was breslow depth 14mm clarks level V and ulcerated.  My stage is IIC with a high risk of recurrence.  My questions are what other tests should I have done?  What about a LDH level in my blood?  Shouldn't this be done?  What if the Melanoma went to the bone?  This is concerning to me because my MM was on my chest wall.  Also someone told me that PET scans can't detect tumors smaller than 5mm.  Is this true?  How often do you get PET's in the first year?  Thanks for all your help!!

Denise

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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nicoli's picture
Replies 1
Last reply 7/13/2011 - 11:03am
Replies by: TracyLee

Keep us updated. Just like I tell my kids.............if you don't keep in touch, I tend to worry.

Nicki, Stage 3b

Be strong and take heart, all you who HOPE in the Lord. Ps. 31:24

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lhaley's picture
Replies 7
Last reply 7/11/2011 - 2:34pm

CLEAR!!!   That means I'm now 5 weeks NED!  However, there is always a however, my onc is leary because the location is so close to the last recurrance, and that recurrance is just .5 inches from the one before that. They are still going to excise the lump entirely to be sure.  I'd rather proactive instead of reactive. Radiation will start again once the lump is entirely excised.  They didn't excise the first time because we had decided since surgery had just been 4 weeks before that if it showed to be mel I was going to go systemic with a low tumor burden.

So, until proved otherwise.... I was NED at my stage IV 5 year anniversary!! 

Linda

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NYKaren's picture
Replies 4
Last reply 7/10/2011 - 1:59am

I had my 3rd Ipi infusion yesterday.  I posted about it when I came home, the computer ate my post, then I went to bed.  

I've shared my stomach issues (and I did mention to Dr. Wolchuk that some docs are prescribing Immodium for on-going issues, and he said that it's in the physician instrustructions that they all recieve that Immodium should only be used 2 or three times and if it continues to go onto the Entocort.  It's so weird being on a drug that's so new that not all the docs treat the side-effects the same way--even if they're in the same hospital.)

I now have a mean Ipi rash on my torso.  First you can barely see it, but once I start scratching, it's huge.  They prescribed something like Kenalog creme; doesn't do much & can only be used 2x/day.  The rest of the day I use Eucerine, Sarna, etc.   I was taking Zyrtec & Benedryl, but can only take 2 benedryl at night. Today I told them it's getting worse so they prescribed a stronger antihystimine.  I gotta tell you, being on Ipi sure gets my phone calls returned fast.  They practically want to know if I sneeze twice in a row!

ANYWAY, when he saw the rash, Dr. W was so happy!  He said it looks like I'm definately responding and he's also excited about the white that's running all throughout the melanoma itself (it's on my temple/upper cheek).  He said that he hopes it will start flaking off soon.  From his mouth to G-d's ears!  Even between my first & second infusions, it was starting to spread again, and it's been stable (at least visibly)  since the second infusion.  The radiation had initially stopped the spread, but that didn't last long.  But it did buy me some time from when the Ipi was approved until it was actually available non-trial use, so I guess it did serve some purpose.

I was excited to get my appointment for 3 weeks and a PET scan app't for 3 weeks after that.

Boy have my priorities changed.  My husband has liver disease, and now I pray that both of us will be alive to hold our grandchildren.  My kids (21 & 23) know how much I adore babies/children and they've always teased me that maybe I don't want them to wait to get married so I can be a grandma.  (I do.)  I always took it for granted that I would see my children get married and have children of their own.    I WILL BEAT THIS.

Have a good weekend, everyone.

karen

 

Don't Stop Believing

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Tim--MRF's picture
Replies 3
Last reply 7/9/2011 - 3:53pm
Replies by: MaryD, Cid FLA, Nicky

A melanoma patient was featured on the Today Show this morning.  Doug Schwenker and his wife, Tara, came to MPIP for information during his treatment.  Here's the clip:

 

 

http://today.msnbc.msn.com/id/29054368/ns/kathie_lee_and_hoda/#43670441

 

Tim--MRF

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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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