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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BrianP's picture
Replies 10
Last reply 10/21/2014 - 6:03am

Hey Chris,

Was just wondering how you are doing.  By my calculations you should be coming up on your 3rd Ipi soon.  Hope things are going well.

Brian

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BrianP's picture
Replies 7
Last reply 9/18/2014 - 7:14pm

Not sure if the experimental drug in this video could have applications to melanoma or not.  The response this patient got was absolutely amazing.  Would be awesome to see more research done in this field in regards to melanoma.  I've heard of this more overseas but not much here in the states.

http://news.yahoo.com/video/round-2-measles-vs-cancer-132032273.html#/bionic-pancreas-father-mission-105013322.html

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AnitaLoree's picture
Replies 11
Last reply 9/20/2014 - 5:12am

Would really appreciate hearing your treatment experiences on pembro/Keytruda.  What should we watch out for?  Husband due to start infusions next week with Kaiser general oncology, NOT @ melanoma specialty ctr :-((.  Worried that he will not get: smart care, knowledgeable providers, prompt, appropriate care for side effects. Noted posting for "Askanurse@melanoma.com" and will contact plus thoroughly read complete pharmacological info.

Bcs husband's mel cervical spine (C1-3) location so rare have not posted in long time but have monitored your posts which have been so very informative and helpful refs. 

Hx: Resection surgery, partial, 10/28/13. Husband has unk origin vs primary extra medullary intradural mass anterior to cord @ mid C2 (13x7x4mm) with contiguous mass in the ventral cord @ mid C2, con't unchanged from MRIs post focus beam radiation 02/14. Unk if tumor grew after surgery bcs pre radiation MRI not done.  PETs neg for addt'l tumor sites (he is SO lucky).  Since tumor has been stable, plus they don't know what to do, Kaiser counsels "Wait & See" (!!! like for what?).  Got ref to UCSF mel ctr and could enter ipi/pembro/IL-2 trial.  Worried about ipi as so many have posted that ipi enlarged tumors before shrinking/disappearing.  No room for enlargement here and any more damage would be permanent.  Already permanent tingling numbness hands, feet, no temperature sensitivity left side.

With the early FDA apprv'l Pembro, Kaiser can give & will per our request. It will not be necessary to survive ipi 1st.  Would like to go to UCSF for mel mgt but don't have open period to change plans until end of yr.  Too long a wait.

Have him taking turmeric (curcumin+piperine)/Jarrow formula - @ Whole Foods;  3x/d glass Japanese green tea, Sencha/Macha highest in EGCGs, available Costco; no inflammatory foods, hi glycemic index foods; mostly alkaline foods, kale smoothie every day, Vit D3 1000 IU daily; safe fish (use Monterey Bay Aquarium guide app); organic fresh, raw, veggies, sprouted grains, no processed stuff.  Really not huge difference from previous eating pattern.  Just have dropped the wine, beer, desserts, muffns and some of the grains that are more acidic.  Did this help keep his tumor in check???  Feel good about being able to do something that has quite a bit of good studies and data to support helpfulness of wholistic approach!

 

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FlakitoAJZ's picture
Replies 5
Last reply 9/21/2014 - 2:20pm
Replies by: Anonymous, Tim--MRF, FlakitoAJZ, malika

Hello everyone.

 

I have a 3 year old girl and last year (2013) around October this weird pimple appeared on her chest. It looked nothing serious, we assumed it would dissapear eventually. Except it didn't, it began to grow , particularly upward, against the skin surface in a pointy sort of way.

We made an appointment with our local Cancer league to have it removed and have a biopsy test made on it.

The thing is the biopsy results don't come until two weeks and the doctor that removed the tumor said that upon looking at it he thinks it's melanoma.

But really? Melanoma on a 3 year old? Do you know if a case like this has indeed happened somewhere? I thought that melanomas appeared at 13 years old or more, not as early as 3 years old. Actually 2 years old since it appeared last year.

Please share any info you can, my wife and me are extremely worried and need to know more about this. Thanks in advance for any info you can provide.

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Melissag0624's picture
Replies 6
Last reply 9/19/2014 - 9:01am

For those people who have brain mets, what was your first symptom? I am stage 3b and have extreme dizziness and I am worried. I have called my doctor, waiting for a call back......just wondering if anyone's first symptom was dizziness.

P.s. sorry for overreacting, it's hard to not go straight to the cancer when new things happen.

<3 Melissa

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Ginger8888's picture
Replies 10
Last reply 9/17/2014 - 7:45pm

Was up half the night thinking about today and it's outcome...I have my scans today to see if my treatment is working or not...I've been told that most of the time the first scan after this treatment could look worse than it did before treatment, that's how this treatment usually works, so i will try not get too discouraged if things don't turn out the way i have been praying for..Wish me luck and can always use some positive thoughts and prayers..I don't get result until the 23rd...If this doesn't work or is working to slow then onto the next one and i'll kick it's ass too. Treatments -0 Ginger -2...(as far as side effects)Have a wonderful day..

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Anonymous's picture
Anonymous
Replies 3
Last reply 9/18/2014 - 5:34pm

I'm very confused as I've been diagnosed stage 4 with lung metastasis. I have low tumor burden and my oncologist feels that if ipi or if needed PD1 works, that can be "cured". I thought it was incurable. I know these are new treatments but what is reality?

Let's work for better treatments....for a cure!!!!

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EricNJill's picture
Replies 4
Last reply 9/16/2014 - 10:22pm
Replies by: Bubbles, EricNJill, Fen

I'm sure most of you here don't remember me.  It's been a long time since I've been on this forum.  My husband, Eric, passed from Melanoma in August, 2011.  I've still been active in the community and I wanted to share with you an opportunity to earn $225 for a one hour survey.  When Eric was alive he did a survey with this company so I know that it is completely legitament.  So that you know I'm legit I'm sending you a link to a story that was done on my late husband and I with The Skin Cancer Foundation.  http://skincancer.epubxp.com/t/17089/53

RC Horowitz & Company Inc., Marketing Research is trying to spread the word: They are looking for patients that have been diagnosed with Metastatic Melanoma to participate in a confidential market research interview. You must be currently taking Zelboraf in order to qualify. Those that qualify and participate will be paid $225 for a 1 hour telephone. Please contact this number if you are interested in participating.  Be sure to tell them that Jill Judd referred you.  Contact Jane Walker or Raina Abramson at 888-392-5000

Hurry, I think they will only have this opportunity open a couple of days. 

Good Luck!

 

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eturner's picture
Replies 2
Last reply 9/17/2014 - 9:58am
Replies by: eturner, arthurjedi007

Hey guys my question for today is.... What is the best treatment for numerous bones mets? My husband has tried IL-2 and Braf combo, now he has had first dose of IPI (have to IPI in order to get PD-1 ). How does PD-1 seem to be working on bone mets. Does anything else out there look promicing?  Also since my husband has failed the braf combo drug, which just stopped bone mets growth for about five months does that mean those bone mets will start growing again??

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Teri in Dayton's picture
Replies 6
Last reply 9/20/2014 - 3:15am
Replies by: MissyT, Squash, Melissag0624, Anonymous, gaby

I was diagnoised  stage IIIa/b in August 2014.  I'm looking for any information or advice from anyone using pegylated interferon, Sylatron. It has been recommended by my Oncologist. Thanks for your time.

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Cat's picture
Replies 3
Last reply 9/17/2014 - 10:53am
Replies by: Cat, Marianne quinn, Anonymous

Hi All,

For those who are not familiar with MRF nurse support, if you have a specific, more medically based question, you can submit your question to the MRF nurse by emailing askanurse@melanoma.org. You can expect to receive a personalized answer from MRF experienced nurse within 72 hours.

I recently emailed Nurse Katherine,a question about a side effect that I was having on Merck anit -pd1. She answered my question in a timely manner and her answer was very thoughtful. She even took the time to see if there was any new research regarding my side effect.

I was very impressed with Nurse Katherine's answer to my question so I just wanted to make sure others know about this  "ASK A Nurse" Support.

Tim and Shelly, thank you for this opportunity you have given us to talk to a nurse.  I think that Nurse Katherine is very professional,knowledgeable and caring. Nurse Katherine is truly an asset to the MRF Team.

Thanks,

Cat

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magnus31's picture
Replies 3
Last reply 9/16/2014 - 9:06pm
Replies by: Mat, Ed Williams, JoshF

Dear all,

We all probably once believed that cancer would not hit ourselves but instead unfortunate others. Yet here you are, reading this post. And yet here I am, after having browsed through hundreds of messages posted in this forum over the course of the years, posting my very first message on this melanoma forum.

I was diagnosed with IIIA melanoma on my upper right arm in late 2012 at the age of 29. Luckily, only my sentinel node showed signs of disease after a lymph node dissection in my right armpit. Twelve months of Interferon treatment and close monitoring followed with no signs of recurrence.

But that was until April 2014 when a regular CT scan identified a few millimetric nodules in both lungs. A follow-up scan in July 2014 revealed little change in these. My oncologists still recommended a lung biopsy to identify the nature of these nodules. This biopsy was carried out last week for which I shall expect results in three days.

So, here I am. Still young. So much I want to do in life. Feeling fit. But nervous. And tense. Trying to balance fear with rationality. Keeping my family and friends unaware for fear of over-reactions. Trying to understand what a potential transition to Stage IV really means.

How did you guys deal with taking the step from stage III to stage IV? How should I go about understanding which are my possible treatment options? How do you handle living with a stage IV diagnosis? 

Thanks all,

Magnus

 

 

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odonoghue80's picture
Replies 3
Last reply 9/16/2014 - 9:27pm

Hi there,

i have a tumor in my groin that has been growing out of control, and is extremely painful. It is the size larger than a softball and is so painful I can't walk. Last week, my doctors postponed getting the TIL therapy at the NIH, and my local oncologist agreed.

So this week I am starting on chemo and radiation the following week. I'm not sure what to expect from the chemo (carbo/taxol). It will be an infusion for 4.5 hours, every 3 weeks. Has anybody had experience with this chemo. We are hopeful this can shrink the tumor and give me some relief. 

As for the radiation, I have no idea what to expect of it, or how it is administered? I have experience with SRS radiation to the brain, but has anybody have experience with a targeted radiation therapy to the body? If anybody can share some thoughts please let me know. 

Thanks,

Shane

 

 

 

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arthurjedi007's picture
Replies 9
Last reply 9/15/2014 - 11:35am

MC1371 Targeted Complex Therapy for Advanced Melanoma: Nab-paclitaxel (Abraxane)/Bevacizumab Complex (AB-Complex).

Basically my Mayo doc wants to try to get me into this if the pd1 does not stop the rest of my tumors from growing. Although pd1 via the first scan either stopped or shrank everything except for 5 tumors which 3 I'm having radiation done on. In a few weeks we will rescan.

So far what I've read about this stuff does not look like it is very affective on other cancers let alone melanoma. So I'm thinking my plan B should still be TIL but I thought I would ask. Maybe I'm missing something.

Thanks.

Artie

 

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Laura123's picture
Replies 5
Last reply 9/15/2014 - 3:53am

Hi there, 

 

firstly, thank you to anyone reading this..

For the past 5 months I have had a continuously growing mole on my arm. It has forever been a pin prick of a flat mole but in April it raised and grew very quickly, it then went pitch black and after two weeks returned to normal colour and has got higher and wider. It is only 5m wide and 2m high but I have never had a mole change like this and I have a lot of moles. 

i got referred to the hospital over three months ago, although they firstly lost the referral, then after sending a second one they put me under a non-urgent as it doesn't have an irregular border. 

in the period of the three month wait the mole has changed a lot. It's tiny (less than 1cm) which is why they are not taking it seriously, but I know myself, and I really don't think it's good. 

I'm going to another doctor tomorrow morning and all I want is for them to just cut it out. 

my question to you is, if it is nodular melanoma and had been growing for six months, could it be life threatening? I also have a lump on my head and two rIsed solid lymph nodes which I've been told via a ultrasound scan is nothing. 

I would be greatful for any advice as you certainly seem to know more than any GP I've seen. 

sorry for the post being so long. And thank you very much for any answers received. 

 

Laura

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