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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LynnLuc's picture
Replies 1
Last reply 3/16/2011 - 11:46am
Replies by: KellieSue

Well I had my latest scans on Friday...The news was not good. There is a new mass on my right lung that is pressing on my trachea. This causes me much pain, shortness of breath and coughing.

I was on a Braf-Mek inhibitor clinical trial, however, I was having terrible side effects, mainly daily fevers. I was immediately taken off this trial Friday. Then given 2 blood transfusions since my hemoglobin continues to be very low.

Now we have 2 options....We wait 28 days to start Ipiluminab "Ipi" or if the pain increase they may have to radiate the tumor sooner.
The other option, if approved, is much more complex. Tomorrow the doctors will meet to discuss my developments and see if surgery is at all possible. If so, they will harvest some of the tumor and make an injection and give it to me along with IL-2 and chemo. This will definitely be the tougher route. 

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KellieSue's picture
Replies 1
Last reply 3/15/2011 - 9:36pm
Replies by: dawn dion

Still feeling good. Had a ECHO/EKG today and about 9 vials of blood drawn today. Yikes!

My thyroid tumor seems to have disappeared! It was stable and even shrunk a bit with the 2 doses of ALT and IL-2 but it was still sticking around on my neck. But I can't feel or see it anymore!

Everything looks good, I'll have my first CT in about 4-5 weeks. I'm very antsy, hoping the scan shows how good I'm feeling!

I did start on dicyclen(sp)  for facial rash, I don't have one yet but it's probably coming so they want to try and stop it in it's tracks.

Also another weird thing, I was given a bottle with 32 pills 3 weeks ago so I only took  20 pills up to today but I had to turn my pill bottle in and I got another one with 32 pills in it. Weird right? You would think with what this stuff costs they would want to use it all up before they gave me another bottle. Oh well, I'll do what they tell me. :)

Dr is very happy with how I look and feel!

Kellie(From Iowa) Stage IV on B-RAF

Cancer Sucks. I'm so not done kicking cancers ass! I have a lot of life left to live

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mom3girlsFL's picture
Replies 4
Last reply 3/16/2011 - 3:22am

Got the news today - CT abdomen/pelvis and chest xray all clean!  Whoo-hoo!  Oh yeah, doing the happy dance!

:) Laurie

Do not fear tomorrow, God is already there.

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lhaley's picture
Replies 5
Last reply 3/15/2011 - 9:30pm

I had 5 nodes removed in October that were under the collar bone. They went in on the side of the breast to get to the area.  In Dec. my breast started turning pink. I went to my gyn and she put me on an antibiotic, she wanted me to go back and see my surgeon. I called him and from the description he wanted to wait to see if the antibiotic helped ,(I have to travel to see him) everyone was thinking mastitiis.  It started to get lighter then 2 weeks later it was back. Happened to be at family Dr. and she put me on another antibiotic. I called surgeon again and he wanted me to see a infectious disease Dr. Found out I needed a referral. Went to local oncologist and she agreed but had me use warm compresses and massage and said to come back the next day to see if it helped. It did get lighter but in the meanwhile my liver counts were checked and were extremly high so that had to be dealt with. It was a drug interaction from the antibiotics and my cholesteral meds. Referral was never made.

It was now time for me to go to Charlotte to see Dr Amin (mel specialist). He took one look at the breast and went and got Dr. White (my surgeon who also specializes in breasts and mel). He ordered a diagnostic mammo and ultrasound.  This was done at home. Results were inconclusive with them seeing changes of thickening of the skin and wanted punch biopsies to exclude inflamatory breast cancer. In the meanwhile I've seen both my family Dr. again and my local oncologist. So off to the derm I go today. It was red when I walked in and by the time he sterelized the area and marked what he wanted to do the area had faded somewhat!  He then decided that a punch biopsy would be looking for a needle in a haystack since the pinkness was so evenly distributed over the entire breast.  He suggested a breast specialist he knew in the next town. Came home and called and ...... she has retired. 

I am so confused!  Here I am stable with stage IV mel (watching 2 nodules in lungs), my mel has always been a bit different with it presenting twice in the bladder. I'm sorry this is so long but if you are still following could this be a result of the nodes being removed?  A few Drs. have speculated that there could have been damage to the lymphatic pathway but they just don't know.  I can live with a pink breast (it does not hurt) but if it is a form of breast cancer then I have to take action.  When I had massive reconstruction on the other breast from surgery with mel I did not have this discoloration issue.

Any help would be appreciated,

Linda

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was888's picture
Replies 7
Last reply 3/24/2011 - 12:22pm
Replies by: ShariC, Sharyn, was888, Fen, lhaley

Hello everyone,

My father was recently diagnosed with Stage IV Melanoma.  This is the second time around for him with Melanoma.  2 1/2 years ago he received a diagnosis of Stage III melanoma.  He had the nodes removed from his neck and began Interfuron and Radiation.  He was unfortunately not able to finish the Interfuron because of what it was doing to his health.  He is now 66 years old.

Last week he had his 3 month PET Scan and unfortunately this scan lit up.  They state they see 30-40 nodes of concern located throughout his body.  On Friday of last week he had a biopsy done on nodes below his arm pit on the left side.  They ended up taking out 4 golf ball sized nodes and did a biopsy in the surgery room and they all came back as positive for melanoma.  We should get his final biopsy results back today, however the doctor's stated that based upon the initial results they feel everything on the PET scan is now linked to melanoma.

I am reaching out to this board to possibly help give some guidance on the most current and up to date treatment options available.  My father is willing to travel, and is ready to fight this horrid cancer.  We are meeting with his oncologist on Thursday to determine his recommendations of treatment after he is able to review the final biopsy reports.

I had a good friend who passed away from Stage IV melanoma last year, so I am somewhat knowledgeable about the treatments and procedures, but know this board is full of people who can help provide more details on these treatments.

Thank you all in advance for any info you are willing to share.

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Anonymous's picture
Anonymous
Replies 6
Last reply 3/16/2011 - 3:20am
Replies by: MRFUser2011, KatyWI, ShariC, lhaley, Anonymous, MichaelFL

Hi Evveryone,

 

I am scheduled for my first brain MRI with & without contrast. I want to get the best pictures so can anyone tell me how to prepare for a MRI brain scan. Do I need to fast?

 

Thanks foryour reply.

 

 

 

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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 

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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 

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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

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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. 

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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?

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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

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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).

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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

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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!

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