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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kbc123's picture
Replies 16
Last reply 3/20/2011 - 3:32pm

Finally going to NYU for my second opinion on my supposed 3A melanoma disease on Monday .  I had an appointment with Anna Pavlik, who I wanted to see because of all the good things I heard, I am now seeing Dr. Ott in her office.  Any feedback on this??

Its bad enough we have to go thru this, make the appointments in advance just to go see someone that may save your life, just to hear "sorry, something has come up."  I am disgusted, aggravated and stressed to the limit.

 

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bball's picture
Replies 3
Last reply 3/19/2011 - 9:35pm

anyone have any experiaence with mistletoe injectionsor hyperberic therapy , to improve immune system

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Rocco's picture
Replies 10
Last reply 3/19/2011 - 9:22pm

Just got home from a triple header of appointments today:  Dermatologist, Ophthalmologist and Oncologist.  I had experienced a lot of scanxiety in the days prior.  But all of that was quickly forgotten as I received a clean bill of health from all three!  CT and MRI were 'as clean as a whistle' according to my Onc.  Ophthalmologist has been keeping track of me since I experienced eye related issues after being on ipi.  He reviewed the recent MRI and was surprised to see that the muscles of my eyes appeared 'normal' again!   Derm said no issues noted, see you again in 6 months.  

Scans again in 3 months (June) and possibly after that I'll move to a 6 month cycle!

Life is VERY good right now! 

-Rocco, Stage IV, Ipi responder!!

Luke 1:37

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The Roche study committee has decided to allow me to go back to the Brim -3 study after I finish with my WBR!  This is great news since the Braf was holding the chest tumors at bay.  I did progress to having 5 brain mets.  I have just finished with a third of the WBR and today I have woken up with more strong side effects, effecting my left side.  I slouch and trip.  Doc said the WBR would cause more swelling and the symptoms would increase for some time.  The steroids are drving me crazy with feeling like I've had WAY too much caffeine and hungry ALL the time! 

 

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ValinMtl's picture
Replies 21
Last reply 3/19/2011 - 1:16pm

I have completed my 4th round of the compassionate ipi trial.  Received my scan but have as yet to meet with my doctors although spoke over the telephone to one who was concerned and would be speaking the director of the trial.

RESULT

Abdomen:

Key finding of this study is the signifcant progression of a previously seen left inguinal region 1 cm lymph node in short axis diameter which is currently seen measuring 2.6 cm in short axis diameter.

Impression:

Follow-up patient with metastic melanoma showing disease progression according to recist criteria with more than 20% increase in size of a left inguinal region lymph node.

Decrease in size of more than 30% of a right external ilac lymph node. Two other non-measurable lymph nodes show also decrease in size.

No newly developed lesions.

I'm was very happy about the 30% decrease on my problem leg but extremely concerned and surprised about the 20% increase on left.  I can actually feel the swelling. I have heard (and praying this is so) that sometimes lymph nodes react to ipi and was wondering if anybody else has had such a reaction.  Would appreciate any comments or thoughts on this.  I'm hoping they don't take me off the treatment since I have had this increase (unless, of course, it is absolutely necessary).  I'll be due for another scan in 12 weeks.

Stressed and worried in Montreal,

Val

Live Laugh Love Nothing is worth more than this day!

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kpcollins31's picture
Replies 19
Last reply 3/19/2011 - 9:46am

I am 37, the father of three young boys, and the sole provider for my family. I was just diagnosed with melanoma on Friday (2/18/2011) and am wading through all this new information. It is intimidating and frightening. I had a growth on my forarm... was large and unsightly but the doctor was not concerned. Initial diagnosis was keratoacanthoma. Now I get this report on a malignant melanoma... Breslow thickness >8mm, Clark level V, ulceration present, mitotic rate of 7. All Greek until I start doing some reading. Now I am almost wishing I had not read anything. Still a little shocked and scared. I am scheduled for a sentinal lymph node biopsy in a week on my birthday of all days. Hoping for the best present ever which would be a negative result.

Happy to have found this forum in my reading. Wish me luck.

Kevin

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killmel's picture
Replies 2
Last reply 3/19/2011 - 1:26am
Replies by: MaryD, lhaley

Hi Everyone,

I do not post much but I visit everyday to learn from you all.

I am posting today to be able to give back to all of you who have helped me learn so much.

I am  stage 3 and have scans regularly going back to January 2009. I always have my scans done at the same place so that the radiologist have copies of older scans for comparison.This week I had my scans and was scared out of my wits after reading the reports. To make a long story short, I have my very lucky to keep my recurrences in my leg. The radiologist who read my scans this week identied "new" areas in my lung & liver that  were suspicious & needed follow-up.

Frantic, I called  another radilogist who had read my scans in the past & ask his opinion of these 2 "NEW" area in my lung & liver. To my relief, this radiologist took the time & went back to my old scans in 2009 & was able to identify that these 2 areas of concern were on my scans back in 2009. The areas of concern in my lung & liver were the same & stable, and more than likely benign.

My lesson learned is not to panic . The radiologist who read my scans this week did not even bother to go back to look at older scans and compare. I would recommend everyone to try to get a second opinion before believing the worst. Also, it is a good idea to get the CD discs of your scans so that you can get a second opinion & have a record of your history ofscans.

Thanks for reading my post.Wishing you all a lifetime of NED!

Wendy

 

 

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Anonymous's picture
Replies 1
Last reply 3/18/2011 - 10:15pm
Replies by: LynnLuc

Anyone else concerned that insurance companies might balk at approving the cost of ipi/Yervoy treatments (off trial)  if/when FDA moves forward for approval of it? 

Has anyone had experience continuing with a drug going from trial to mainstream and dealing with insurance approvals, etc? 

Just curious..

Luke 1:37

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gabsound's picture
Replies 2
Last reply 3/18/2011 - 9:43pm
Replies by: LynnLuc, lhaley

The results came back on my PET scan:

"There are extensive changes seen within the right groin and medial right thigh. Single area of increased hypermetabolic activity within the inferior portion of the right thigh incision where there is some thickening seen on the CT. The SUV is as high as 2.0. Suggest direct visualization and possible repeat biopsy and excision is suggested. There is low grade probable post surgcal activity within the right groin with no definite hypermetabolic lesions. The remainder of the PET findings demonstrate no evidence of distant metastatic disease."

My surgeon is the one that gave me the report and he said "that's why I don't do the PET scan this early". He thinks it's all related to the surgery and did not seem worried. I feel relieved, but know of course the scan will need to be repeated later to recheck that area. That part of my leg has been sore, but is less sore now than it was. Tomorrow makes 4 weeks from the date of my WLE and lymph node dissection.

I also saw on a consult report that my Physician friend had that dx is superficial spreading Clark's level IV. Breslows depth 2.35 mm with ulceration present. Regression absent. Lesion now T3bN1M0. Does this make me stage 3b? Assuming PET is really negative?

The PET scan was done 3 weeks post surgery. I still had one of my drains in. That came out yesterday :)  I'm wondering if anyone else had changes in region of surgery and did these resolve?

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Reservoir Dog's picture
Replies 4
Last reply 3/18/2011 - 6:54pm

Hello all!

Patrick here in Dallas making my first post.  I'd like to thank you all for your up-lifting stories of courage and determination.  When I read about what others have gone through & are going through, I came to realize that I am a flipping weenie!!! 

I returned home from the doctor in tears because it appears another Melanoma spot has resurfaced on my face... for the 4th time.  After 3 excessions (maybe a 4th), 10 months of Interferon, coupled w/ radiation on the effected area, my doctor is concerned that it continues to return.   I guess the stories of Blue Nevus melanoma being very agressive... are true! 

My Oncologist said she'd like to put me on Leukine (Sargramostim) in an effort to extend my life.  I'm curious to see if anyone has used Leukine and what the results were???

Thanks in advance and God Bless!

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Replies by: bball, JakeinNY, jag, Carole K

I am 2A, 3.5mm with a high mitosis,and am looking at alternatives does anyone have experiance with IAT in the bahamas, are going to a raw or macrobiotic diet, also looking at Qigong, and ozone /oxygen therapy. Trying to find a path to follow and then enjoy my life. Thanks for any feedback.BBall

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Rydell's picture
Replies 3
Last reply 3/18/2011 - 12:31pm
Replies by: jrami3, KellieSue, lhaley

I am fairly new to this website, I've been viewing posts and replying to some. This website has been so helpful! Thank you all for educating me, comforting me, and giving me hope!

I was diagnosed with Stage 4 Melanoma in January 2011 after a double craniotomy. I have one brain met left and 5 other lesions throughout my body. I received 4 CyberKnife treatments in February and I started Temodar (150mg/day for 6 weeks). I also just found out that I tested positive for the B-RAF mutation. Can anyone tell me their experiences with B-RAF inhibitors?

I met with my neurosurgeon today. The MRI, one month after CyberKnife, shows negative uptake in the areas where my two brain tumors were removed and the tumor that couldn't be removed is stable not growing! I have two more weeks of Temodar then another PET scan to see if that is working. Dr. Carvajal from MSK will tell us what the next step will be in this fight! He's a big advocate of Ipi. Can anyone tell me their experiences with that?

I can't express how helpful this place has been for me, I was scared and searching for someone to talk to that could actually relate. Thank you and I wish all the best to all of you that are battling this beast!

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Simmy from Oz -Melbourne's picture
Replies 6
Last reply 3/17/2011 - 11:20pm

Hi my fellow MPIPers!

I have been on PLX4032 (BRAF) for 7 weeks, and so far fabulous news!!  Im rapt and couldnt have asked for better results :-)  My brain tumour has disappeared... YAY!  And all of my tumours (liver, lungs, skin, everywhere basically) have all shrunk by an average of 70 - 80%  Although I am feeling great emotionally and mentally, I am suffering from the side effects pretty badly.   My entire body has been covered in this rash since week 2, but it is especially bad now on my face.  It looks terrible and the itchiness is unbearable!  Does anybody have any advice? or has anyone experienced this?  I also have aches and pains in all my joints, and terrible pains in my calfs and feet (my feet are blistered and painful to even walk on?)  Im not sure what to do, should I be resting to get better, and keeping my feet up,etc, so that I dont push it all too quickly and end up worse?  Or should I be attempting to do some little exercises and perhaps rehab stuff at the swimming pool? 

Also, Ive just spent the past week in hospital for a bit of a 'spruce up'!  I had a blood transfusion, which my doc sent me in for, by while in there they did a  blood test and discovered that

1. my calcium was too high (only by a little bit).  they gave me something thru IV, then lots of water thru there.  What does all this mean? Someone told me that CAlcium % CAncer go together.. Can someone please explain.... 

2. my potassium was low, so they gave me some of that thru IV too.  Anything I should know here?

ALSO...... PLEASE I hope somebody can help me with this BIG BIG problem of mine....... I CANT STOP WETTING MYSELF WHEN IM SLEEPING.  I WEAR 3 NAPPIES TO BED, HAVE SPECIAL WATERPROOF THINGS DOWN ON THE BED, BUT EVERY MORNING I END UP SATURATED AND HAVE TO CHANGE EVERYTHING......This problem is driving me mental.  My partner sleeps separately now, and nothing helps it, like not drinking at night, etc.  Im on methodone and gabapentin, I think these tabs just 'knock' me out so much, that when Im sleeping, Im just too relaxed to wake up?? But the doctors dont think this could be the reason.  Ive been tested and nothing is seriously wrong??? so im just lost and goin mental!!!  PLEASE CAN ANYONE HELP ME ON THIS ONE???    

God bless you all and hope that many of you have also been experiencinng good news and results, with all these new drugs emerging. 

love always, u are all always in my thoughts,

Simmy from Melbourne, Australia. 

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jrami3's picture
Replies 7
Last reply 3/17/2011 - 7:37pm
Replies by: Janner, jrami3, MichaelFL, Rydell, Anonymous

I am so new to this. I was diagnosed 2 weeks ago with Malignant Melanoma In Situ.. The Surgeon went in and did another excision to get clear tissue. The original tumor size was 6mm x 8mm.  He told me no further treatment would be done.. Everything I have read so far is that is a big size that most In Situ are less than 1 mm... I have searched every site high and low... Does anyone have any insight? I lost my cousin a few years ago to Melanoma at age 32, this has me scared =(  Thank you!!

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Melanoma Mom's picture
Replies 12
Last reply 3/17/2011 - 4:12pm

"Unremarkable PET CT examination from vertex to the skull through the lower extremities. No malignancy detected."

Oh yeah, we're doin' the cancer-free happy dance! The PET scan for our son was clear and while we are still waiting for the CT results, I am going with the assumption that it will be more great news.  Bloodwork is also perfect and hardly shows any effects from the continued Interferon therapy. Next up: routine check-up at Dana-Farber in April, as we haven't been there since December.

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