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.

Expand/ Collapse Topic
 
Replies By
View Topic
Manubuzzi's picture
Replies 3
Last reply 3/15/2011 - 1:13pm
Replies by: Manubuzzi, lhaley

 

Dear all, 
 
I'm writing you from Argentina.  My mother is 45 years old and was recently diagnosed with Stage IV Melanoma.  She already had a tumor removed from her brain.  The next step is to get a PET scan to see if the malignant cells have spread to other parts of the body, and to start the traditional treatment of chemotherapy and radiology.  We are a close family, she has 5 children.  We are ready to battle this illness, but as you know, this is a desperate, depressive and devastating situation.
 
I have been reading your post and it has given me a lot of hope!  Any help that you can give us would be so useful, there is so much that we want to know.  I have been reading a lot of information on the internet and I get confused. 
 
Although my mother is sick, with half her body paralyzed from brain surgery, she is still in great spirits, with energy, she eats and sleeps well.  We already have specialists on the case that are focusing on the next steps- treatments, medicines, etc, but I'd like to focus on keeping her spirits and strength up!  I've heard about certain diet regimens and dietary supplements like "Cellect" that have had a high success rate.
 
Please keep in mind that I am in Argentina.  Any help/advice/tips that anyone can give me will be greatly appreciated, especially if they are accessible from Argentina.  Thank you!
 
 
+540291154029474 

Login or register to post replies.

 

Dear all, 
 
I'm writing you from Argentina.  My mother is 45 years old and was recently diagnosed with Stage IV Melanoma.  She already had a tumor removed from her brain.  The next step is to get a PET scan to see if the malignant cells have spread to other parts of the body, and to start the traditional treatment of chemotherapy and radiology.  We are a close family, she has 5 children.  We are ready to battle this illness, but as you know, this is a desperate, depressive and devastating situation.
 
I have been reading your post and it has given me a lot of hope!  Any help that you can give us would be so useful, there is so much that we want to know.  I have been reading a lot of information on the internet and I get confused. 
 
Although my mother is sick, with half her body paralyzed from brain surgery, she is still in great spirits, with energy, she eats and sleeps well.  We already have specialists on the case that are focusing on the next steps- treatments, medicines, etc, but I'd like to focus on keeping her spirits and strength up!  I've heard about certain diet regimens and dietary supplements like "Cellect" that have had a high success rate.
 
Please keep in mind that I am in Argentina.  Any help/advice/tips that anyone can give me will be greatly appreciated, especially if they are accessible from Argentina.  Thank you!
 
 
+540291154029474 

Login or register to post replies.

Lisa13's picture
Replies 5
Last reply 3/15/2011 - 4:17pm
Replies by: Lisa13, Carver, Janner

Almost 3 weeks have passed since I've had the superficial lymph nodes removed in my groin.  I had some of my staples removed last Friday and everything looked good. This morning, I felt a lump just above the suture line which is very painful and even hurts when I cough.  During surgery, they found 1 lymph node positive for melanoma, but I'm still awaiting the results from the other 17 that were removed.  I also had a PET scan that revealed NED.  That being said, could this hardened lump be a recurrence of the melanoma so soon after surgery and if so, is it normal to be this painful?  I've placed a call into my surgeon just to be on the safe side, but wanted to know if any of you have experienced this?   It's hard not to be paranoid about these things when you've been recently diagnosed with Stage 3 Melanoma, but it could also be a bunch of other things that arn't cancer.

Thanks!

Lisa

Many impossible things have been accomplished for those who refuse to quit

Login or register to post replies.

Simmy from Oz -Melbourne's picture
Replies 1
Last reply 3/15/2011 - 8:42am
Replies by: Vermont_Donna

Ive been on PLX4032 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. 

Login or register to post replies.

Hi all,
I'll start by saying I hope this finds you as well and content as you can be.

I am looking to connect with others/hear experiences about individuals who have had multiple primary melanomas and/or atypical mole syndrome; and how things have gone for you/what you have done to cope.

My brief history is that my first diagnosis was in 2009 with a stage 1 (.43 breslow/clark level III) on my back.  WLE came back with clean margins, but due to some discomfort on my part with the first dermatologist I saw who made the original diagnosis, I transferred my care to a nationally known private hospital that had melanoma specialists and cutaneous oncologists. There I underwent about 15 more biopsies since August 2009, that came back with things ranging from moderately atypical nevi to another melanoma (in situ). I've had 6 WLE's to manage the more severe atypical and the second primary melanoma. 

In an effort to do more than just "stay out of the sun" to prevent more melanoma, I sought the integration of a naturopath on my healthcare team. I am all for integrated health care and think there are pros and cons to this just like everything else, so I'm not trying to spur a big debate on that topic! What I will say is the naturpath zealously drew what seemed like gallons of my blood and had all these marker tests done. One, a TA-90 glycoprotein that is associated with immune response to melanoma, came back "abnormal."  I went out of my mind researching the sensitivity and specificity of this test, have read everything on PubMed, - even meeting with an oncologist who was involved in research to develop the test. Basically, no one can tell me why it is abnormal or if it being abnormal means anything because the research lines were pretty much dropped in the mid 2000’s.

I hate ambiguity, but am resolved that I will have to suck it up. It is NOT an FDA approved test and the naturopath probably did not have any business ordering it, but here I am with this stupid result.  It has been more than a year now (I stopped seeing the naturpath!) It makes me crazy because data on survival rates for people with positive TA 90 are not good, and the test was developed to detect “occult metastasis.” Like I need any more motivation to worry that my headache is not just a headache and is actually a tumor after having cancer 2X by age 32!

So now, since I have the genetic stuff that goes along with the atypical mole syndrome, two melanomas, this stupid positive TA 90, and many, many strange looking moles, I spin into this place where I can’t help but feel like this is chronic, and will someday take me out.  I’m not trying to be negative (PLEASE no power of positive thinking comments) – I am just honestly scared and it is starting to get the better of me the longer time wears on and the more things I have to have biopsied and re-excised.  I am surrendering to the fact that this is just how life will be, but I thought reaching out to those who have had to deal with multiple primary melanomas and/or atypical mole syndrome would be helpful to get tips on how y’all are coping with an ongoing issue.  Thoughts?

Login or register to post replies.

Carmon in NM's picture
Replies 6
Last reply 3/15/2011 - 8:29pm

I can't believe I made it through most of winter, five months of chemo and I still have my hope and sense of humor intact! Best of all, in about ten days I'll start feeling better and will just keep feeling better and better!

I had a consultation with the oncology surgeon who will be removing my right adrenal gland and what is left of the tumor. We had hoped it could be done laprascopically which would be an easy recovery but the tumor has gotten so tiny and even though the biopsy showed adrenal tissue, it is now separated from the adrenal gland and she is afraid she won't be able to find it if she attempts to do it laprascopically. That means she will be opening me down the front mid-line and I will spend 3-5 days in the hospital.

I also met my new medical oncologist and really liked him too. I told him I hoped he could handle my often twisted sense of humor and he replyed that it is patient's like me who light up a doctor's day! He also handled my interrupting his and my former oncolgist's discussion about my treatment with questions about my own research and opinions. In all, I felt really good about my doctor of the last two year's choice for me as she moves on to Vermont and a new position.

I'm scheduled for surgery on April 19th and recovery once I'm home means not lifting anything larger than a milk carton for six weeks. A hard thing for someone as active as I am but worth it to get and stay well! I am so psyched that the chemo is done and has worked so amazingly. I intend to spend this summer riding my beautiful horse and enjoying the incredible place we live with my husband. I know that sneaky mel could still be hiding somewhere but I choose to continue to be happy and live in this incredible moment right now!

My best to all of you now and my prayers that we each find the treatment that will work for us.

Carmon in NM - Stage 4 with brain and adrenal mets since 6/10

Carmon in NM: Stage IIIB 9/2008; Stage IV 6/2010 with brain and adrenal mets; NED since 4/13/2011. It’s not what happens to you, but how you react to it that matters. ~ Epictetus

Login or register to post replies.

FormerCaregiver's picture
Replies 8
Last reply 3/16/2011 - 8:26pm

Could it be that long-term stage IV survivors have something in common? I
think that it would be interesting to see how many have had GM-CSF
(Leukine) at any time.

From what I have read, Leukine tends to change the nature of melanoma in
some patients. One study has found that "... the recurrence is changed, in
that they are solitary, and allow for surgical excision".

It would be great to get some opinions on this. So what do you think?

Frank
(PS: NED means no evidence of disease).

I urge everyone to thoroughly educate themselves about melanoma. No part of this post should be considered to constitute any form of medical advice. Please consult a competent oncologist. (I think that prayer can help in ways that we don't always expect).

Login or register to post replies.

My ipi re-induction wasn't effective so I'm onto Avastin and Taxotere. I've read that it's used to treat other forms of cancer...I was wondering if any other melanoma person has tried it or is in a trial at this time? I've read a few studies that seem promising.

http://professional.cancerconsultants.com/conference_main.aspx?id=42117

http://afp.google.com/article/ALeqM5ida8la7KM6OiBzS0tOSiXaQLWu7Q

Andy

Login or register to post replies.

Melanoma Mom's picture
Replies 10
Last reply 3/15/2011 - 10:54am

Our son has his quarterly PET and CT scans tomorrow .... the first ones since his initial diagnosis and scans this past Fall. They are skipping the brain MRI this time. He is doing great - sailing through his third month of low-dose Interferon and having little/no side effects. He got straight A's at school this trimester and is currently taking Driver's Ed. 

Results on Wednesday. Please keep him in your thoughts and prayers!

Login or register to post replies.

mom3girlsFL's picture
Replies 3
Last reply 3/14/2011 - 9:05pm
Replies by: BethA in VA, mayeast, lhaley

Had CT abdomen/pelvis and chest xray on Tues 3/8 (a week ago)...posted no news is good news...got tired (anxious) of waiting and called thurs aft and left voice mail-didn't want to have to wait through wknd...no call back.  Got brave and called today (okay, not too brave, called at 5:45) and left another voice mail.

Not to be a pest, only NED since november after groin dissection...what would you make of this???  I'm thinking "no news is good news", but I've also called -they know I'm nervous-and no one has called me back...

Thoughts?

Do not fear tomorrow, God is already there.

Login or register to post replies.

LynnLuc's picture
Replies 1
Last reply 3/14/2011 - 5:49pm
Replies by: lhaley

Since I finished the basic part of my trial on March 2, 2011...I have the MRI of my brain, the CT of  my neck, chest, pelic etc, apheresis and blood work tomorrow....my first app't is at 715 AM and my last scan is at 630 PM...what a long day down in Tampa...

I am back to work and looking forward to only having booster infusions of the Anti-PD-1 every 3 months...hoping to remain NED and getting some energy back!

I won't see Dr Weber tomorrow so he will call me with the results on Thursday.

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

Login or register to post replies.

jag's picture
Replies 9
Last reply 3/15/2011 - 9:10am

If my scans in April are negative that is....NEM means no evidence of melanoma by the way, although I suppose NERD no evidence of recurrent disease (coined by Sharon in Reno) would be a more accurate description 

I am a very lucky man-never thought I would say that.  Reading my profile you will see that my last surgery where melanoma was detected was March 11 2008.  I have had 2 brain surgeries since-last one in September, but they have both been necrotic material secondary to radiation in my noggin-which can cause a dirty mind(that's my excuse anyway-I have less and less dirty thoughts as this material is removed).  My life is slowly coming back to normal(well maybe a new normal).  Despite all of the bumps in the road, (6 rounds of (hospitalized) biochemotherapy,4 rounds of interleukin 2(hospitalized), 2 skin surgeries, 2 lung surgeries, and 6 brain surgeries epilepsy and loss of driving privileges for 1 year) my life is coming back to the way it used to be, I have learned to walk on the I beams of a sky scraper and not look down-even with loss of feeling/function in my left leg from during one of my brain surgeries-still would probably have a hard time passing a DWI test sober .  

Good things have happened along the way too,got engaged on New Years Eve in Nantucket, got married, bought a house, worked in a lot of interesting places every NYC borough except Staten Island-not of my own but beats sitting at home watching Springer and Maury, started my own business with my wife doing mobile veterinary housecall work-We are in negotiations with a company to purchase a custom built mobile practice unit-beats working out of the back of your car.   We have traveled most of the United States-a giant cross country trip on our honeymoon-now just a few remaining national parks to go see, but we have seen all of the big ones that I know of, and just this weekend, 3 years to the day after my last brain tumor removal, Merry underwent embryo transfer (keeping fingers crossed and saying prayers hoping that it works)-I honestly think the thought of  being a dad is scarier then having melanoma.

I am thankful to:

God

my wife and family

my doctors

all of the people on this board that I have met over the years.

I wish all of the people struggling with this disease the best,  Hang in there, do your best, and keep on living.

God Bless

John

Login or register to post replies.

Hello everyone,

I'm hoping everyone reading this is having better health & feeling well. I'm hoping also that someone might recommend a specialist that would know a lot about Stage IV melanoma in the NY/Long Island area. The doctors I'm taking my sister to are all associated with Winthrop Hospital. They may all be well qualified, but I'd like to try for someone who's main concern is melanoma that's progressed to lungs.

Thanks to everyone who's written to me. It seems there are some truly great people on this site.

Take care,

Tom Mennin

Always hoping for the best, Tom M

Login or register to post replies.

MaryMary73's picture
Replies 3
Last reply 3/13/2011 - 10:00pm

Maybe I'm being paranoid but after being diagnosed with a thin tumour back in late 2010, I'm wondering if a beauty mark on my calf may be another melanoma. It's small and round but kinda dark but not black or blue...it's brown. It doesn't fit the ABCDE's of melanoma lesions but not all melanomas fit that mold.

Should I speed up my first appointment with my dermatologist or just see him in April like I am suppose to (which is the 6 month mark post-diagnosis)?

Also, what will the dermatologist do during that first follow up appointment? Will he look at my skin from head to toe?

The only real wisdom is knowing you know nothing -Socrates

Login or register to post replies.

Lisa13's picture
Replies 3
Last reply 3/13/2011 - 5:27pm
Replies by: Erica A, Carver, RMcLegal

I've recently had a wide local excision as well as the superficial lymph nodes removed from my right groin. 1 has tested postive for cancer, 1 other was very enlarged since my immunity was fighting the cancer and I'm still awaiting the remainder of my pathology report. My melanoma is deep (at least 8mm). PET scans show NED, but I'm high risk for re-occrurance.  That being said, I'm researching high dose Interferon and clinical trials using ipillmumab and a vaccine hoping to keep this away for as long as possible.  I'm also meeting with a naturopath next week

Is there anyone whose had a deep melanoma and lymph node involvement who've done any of these treatments and feel it's been beneficial?  My oncologist doesn't think Interferon is worth the side effects for the low benefit it's claimed to have.  I have a 16 month old daughter, so I feel I need to do whatever I can do keep this away for as long as possible, or until a fabulous drug becomes available that gives Stage 3 a much better prognosis in life.

Thanks,

Lisa 

 

Many impossible things have been accomplished for those who refuse to quit

Login or register to post replies.

Pages