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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Linda J's picture
Replies 6
Last reply 1/10/2011 - 7:36am

I am starting the braf/mek combo trial on the 19th with should really give me some peace and comfort but I am going crazy with stress. I have all of the scans within the next 10 days and I'm terrified with what they will find. What if they find that it is everywhere? I have had about 10 subqs pop up in the last 3 1/2 weeks. I can keep myself from feeling my body - I poke and prod all the time. I don't know how I'm going to keep calm from now until next Wednesday. I know it shouldn't be that big of a deal when I feel a new subq but I panic with each one. I've got pains in my right side and I worry that it is all over my liver, which again shouldn't be a big deal because we are going to kill whatever might be there starting next Wednesday. But I'm going crazy with anxiety. How am I going to make it until the 19th???
I know that everyone here understands this kind of stress and fear. How can I get my emotions back on top and feel like a strong fighter instead of a helpless victim - despite what else might pop up???

Linda J

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Vermont_Donna's picture
Replies 2
Last reply 1/9/2011 - 2:43pm
Replies by: Vermont_Donna, Allen C

Hi,

I had to quit work last month and decided to pay for ongoing private health insurance through COBRA at the cost of $654 a month for me and my two kids in college. We have a $10,000 family deductible. I also have medicare, part A and part B. I have learned that if I let the private insurance go I can still sign up for part D even though the open enrollment period has ended. My question is this: Will medicare cover all the neccessary medical care I need for melanoma, that I am used to having? Ie PET/CT scans when the doctor requests them (I have had frequent given my history), and I am in the middle of the IPI trial (the drug is covered by BMS, the pharmaceutical company). What if I end up having to do bio chemo? What about other treatments, or second opinions (they are still talking leg amputation). What about leg amputation?? I called my medical center financial office and they said to call the "estimate line" and tell them what procedures I specifically wanted to know, they would then give me the procedure code and I could then call medicare and ask them the specific procedure code. Ok I am doing that. But I dont know ALL the procedure codes to ask, or what I would maybe need??

 

I would like to hear from people who have only had medicare and what their experiences have been or anyone who knows about this such stuff!!!

Thanks!!!

Vermont_Donna

stage 3a

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Anonymous's picture
Replies 4
Last reply 1/9/2011 - 8:12pm
Replies by: Anonymous, Joan, mkummerle

Does anyone know what information insurance companies are allowed to pass on to a company about the diagnosis, condition, or treatments that its employees have received?

Specifically...I want to know...if I choose not to discuss my melanoma diagnosis with my employer, will they just find out anyway from the insurance company?

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mimi0201's picture
Replies 1
Last reply 1/9/2011 - 3:34pm
Replies by: jim Breitfeller

Do they always go hand in hand?  My husband is Braf negative.  Is he excluded from Mek trials? 

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Sherron's picture
Replies 3
Last reply 1/8/2011 - 11:03pm
Replies by: Lori C, SusanE

It's under Sherron  and I see mispelled words.....I don't even care....It was hard to do the update....It's hard to come back here.  But, I worry about the other one I have grown to care about.  I wish you all the very best in your fight.

Take Care,

Sherron, wife to Jim FOREVER

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vivian's picture
Replies 3
Last reply 1/10/2011 - 11:33am
Replies by: vivian, 2atlascedars, akls

Hello All,

I am relatively new to this forum, but I have spent so much time reading your posts, I feel like you have already helped me enormously.  So here's the deal:  I was diagnosed in early November with amelonic nodular melanoma, Breslow 4.35, Clarke level 5, mitotic rate 9mm, non-brisk lymphocytes. Apparently the melanoma developed very rapidly because two previous biopsies in September were negative for cancer.  The lesion was on the mid left back. It looked like a cyst, not ugly or anything suspicious, but boy did it itch.   In mid-November I had the wide excision and SNB, which was positive for one of two nodes.  Pet/CT were clear and the LND three weeks ago was also 10 of 10 negative for melanoma.  I am counting my blessings, of course, to be 3a and NED, but (and this is the crazy part), four days before the LND, I had an acute appendix and something called a necrotic appendix epiploica.  The lab work on that was clear for "cancer", although I am not sure they specifically looked for melanoma.  Doesn't it seem a little coincidental that a 60 year old woman would have an appendicitis in the middle of all this?  And now, the  two month old scar from the wide excision has started to itch like crazy.  Hmmm...

I know it is probable/possible that neither of these things means anything, but since melanoma is my second cancer (2002 myelodysplastic syndrome, stem cell transplant, total remission), I am really skittish.  Truly, right before the melanoma diagnosis, I had just gotten over thinking every little thing was a return of the MDS.  Of course I will mention the itching to the oncologist, dermatologist and surgeon, but meanwhile, does anyone out there have any stories of  emergency surgeries or itching scars unrelated to melanoma?  (Funny stories always appreciated!) Should I push for further testing?

Thanks, friends!

Vivian

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Melanoma Mom's picture
Replies 12
Last reply 1/9/2011 - 2:53pm

Our 14 year old finished the month of high dose Interferon yesterday. Yay! He did very well, all things considered.

On Monday he starts training and use of the needles to inject the lower- dose Interferon. I was surprised and disappointed to hear that he has to do TWO shots each time to get the correct amount injected. Have others had this situation? He is 6 feet tall and I know it is a ratio of medication using your weight and height. From my understanding, the use of "epi-pen-like" Interferon  injections were discontinued in 2009 so we will have to mix the medication ourselves. 

Just bummed for him .... expecting three shots a week and how we have doubled that. sad Please let me know if you have any further info regarding this. Our local children's oncology unit is great, but the Interferon is an unusual drug for them to deal with, since so few children get Melanoma. I'm wondering if I should contact our main oncologist at Dana-Farber?

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JerryfromFauq's picture
Replies 26
Last reply 1/10/2011 - 11:26pm

I made it safely back to Virginia (luckily) and finally got my Oct 1st scan that Dr Call in Colorado played games and delayed.  Dr Weiss (UVA) did his normal workup on 20 December and gave me his normal smile (especially after seeing my horse accident pictures).  He then told me that the radiology report said absolutely no growth in the innumerable tumors and also no new tumors.  Now to follow up with my PCP for lingering items from the accident and to see my dentist extra.  Dentist said that he cannot currently make me a lower plate because my upper and lower jaws do not line up enough for the jaw teeth to mate!  Oh well, I did learn a way to lose weight. 
(Lost 40 pounds, now weigh less than when I was active in the Marine Corps.  Don't don't recommend losing weight this way!

JerryfromFauq Stage IV since March 2007.

I'm me, not a statistic. Praying to not be one for years yet.

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Sherron's picture
Replies 4
Last reply 1/12/2011 - 11:48am
Replies by: Lori C, Sherron, Linda J, JenC

Haven't heard from you in a while...How are things going?

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hi,

A friend sent me an article about "Melia Supreme" as her chiropractor has her using it for her specific health problem (not cancer), and anyways shje saw in the accompanying literature that some people use it as a topical agent against skin cancer. Here's what an online page said:

 

Melia Supreme is powdered neem leaf (Melia azadirachta) put into vegetarian capsules with nothing else added.

Melia, like Morinda is an amazing plant that has been used therapeutically in India for at least 2,500 years. The word neem is reported to come from the Sanskrit language and roughly means “the healer and illness reliever”. Our main reason for making melia available is that it is another superb broad spectrum anti-microbial showing effectiveness against various fungi, bacteria, parasites, virus (including herpes), and spirochetes. It has also been reported that it does not harm beneficial intestinal flora. Melia has been shown to be hepato-protective, stimulates T-cell production in times of infection, and blocks pro-inflammatory prostaglandins. Melia also possesses small amounts of catechin and quercetin- both having anti-inflammatory and anti-histiminic properties.

In Japan, Melia has been used for cancer treatment of solid tumors as well as using it topically on skin cancers. It has been used successfully to treat malaria as well as vitiligo, and has been reported to increase brain serotonin levels thus having anti-anxiety properties.  Melia has also been shown to lower cholesterol levels. In insulin dependent diabetics, melia has reduced insulin requirements up to 50%. One interesting effect is that without decreasing libido or sperm count, neem has been used effectively as a male contraceptive. In parts of Africa women use it also for the same purpose (so you may not want to use it if you are trying to get pregnant). I could keep going but you can see how it merits its name “the healer and illness reliever”. To read more about neem, NEEM INDIA”S MIRACULOUS HEALING PLANT by Ellen Norten, and NEEM THE ULTIMATE HERB by John Conrick are very informative.

Not that I am going to run out and order this, but was just wondering what people have heard or if anyone has tried this? I didnt see any place where you can get it as a topical application...only as an essential oil and oral supplement.

Thanks, 

Vermont_Donna

stage 3a

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Kmazz99's picture
Replies 12
Last reply 1/11/2011 - 7:13pm
Replies by: Kmazz99, dian in spokane, lhaley, Anonymous

Hi everyone. Im new here. In Nov of 2008 I was diagnosed with Melanoma (on my abdomen). I'll make the long story short. Had the wide excision and dissection of the inguinal node. Pathology on that was fine. recently had some pains in left breast so I had a diagnostic mammogram. They found no mass etc in the breasts but did find Bilateral Axillary Adenopathy. They requested ultrasounds of those areas. They said the nodes are palpable and large but as of now not certain whats infecting them. Do you think its possible that after these two years of being "ok"...this is back or there is a possibility? I am scared. I am not set for u/s until late next week and with results after that, feels like forever to wait. Just curious if anyone can tell me if theyve had experience with this. That would be quite a spread to both armpits. But I have had issues in my left armpit since about 2 months after surgery in Jan 2009. From a rash that they couldnt diagnose or fix with topicals etc. to now being a non itching patch of discolored skin about 3" by 1" in size. Please help. Karen

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EricNJill's picture
Replies 17
Last reply 1/10/2011 - 7:53am

I can't tell you have happy I am that Eric got into the GSK BRAF Inhibitor and MEK combination trial!  They said he got the last opening.  He won't begin for a couple of weeks but it's just a huge relief knowing he got in.  He has a brain MRI on Thursday to make sure that his brain is still clear after the craniotomy.  I asked them about the hospice palliative care he is receiving and they said there was no problems.

He took his last pill of Temodar (2nd round) on Sunday.  His leg looks horrible.  He has new tumors and the existing tumors are bigger so that makes it even more joyous that he got in.  I hate to think about every day that goes by with Melanoma raging on!

I know there are others here on this trial, can you tell me about your experiences.

Thanks, JillNEric In OH

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Anonymous's picture
Replies 2
Last reply 1/7/2011 - 10:21am
Replies by: Janner, Cynthia C

Can Anyone Explain This To Me Please.

 

1. Histolic Sections Show A Deep Scallop Biopsy.  There Is An Isolated Neoplasm Composed Of Atypical Melanocytes In Sheets, Nests, Trabeculae And Single Cells Within The Dermis. There Is Also An Intraepidermal Component Of Irregular Nests And Single Cells With Pagetoid Spread. The Cark's Level is V, The Breslow Thickness Is Greater Than 4.0 MM (Four Point Zero Millimeters). The Tumor Is Transected At The Base. Regression Is Absent. There Are 60 (Sixty) Mitosis Per Square Millimeter.

 

 

I Am Uncertain What This Means And Am Concerned With The Mitosis Rate. Please Explain Mitosis And If This Rate (60) Is Common Or Bad.

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Rocklove's picture
Replies 16
Last reply 1/24/2011 - 10:29pm

Hi All,

I have been struggling with some pain.. not severe but have been taking 600 mg of Ibuprofen 3 times per day  for the last few months and it has kept the pain at bay. I have refused to take anything from the opium family so far as I am still working a full time job and drive. The Nurse had warned me not to drive if I took stronger prescription drugs.

Is there any medication that is milder on the bodies organs that are effective?

I am also struggling with a high creatinine level that started in Sept @ 3.3 after 6 rounds of bio-chemo but has trended down to 1.7 last week.

I am know in my 2nd dose of ipi.

Any suggestions would be appreciated.

Rocky (Stage IV Liver Mets)

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Tracey FL's picture
Replies 7
Last reply 1/9/2011 - 10:02pm

I really want to thank everyone for their letters.  I read them to my mom and she felt better and encouraged.  This has been such a helpfull tool.  We felt that we had been beat, but not now!!!!  The body scans were so bad that they took mom off chemo.  We are looking at the ipi trials now.  This will be her third trial and we will keep going.  I will more than likely be going in for a back surgery myself ( fell and broke both my rods).  I am scared but you guys are my heros and so is my mom.  Keep the faith.

Tracey

mom stage 1V with brain mets, lung, body.

P.S  Mom looks great in her wig, younger.  She sleeps in the terry turban at night very soft and keeps her head warm.

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