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
sheri47's picture
Replies 4
Last reply 2/18/2013 - 10:22am
Replies by: Sandy11, Anonymous, Phil S, POW

Lost my mom char on jan 31 her battle began in 1982, recurrences in 2001,2005,2009 , 2011, and 2012 to the brain , she was a fighter til the bitter end , so proud to have called her my mom , loved her so much .

Login or register to post replies.

Gene_S's picture
Replies 4
Last reply 2/21/2013 - 4:18pm
Replies by: Gene_S, Beezer

http://www.naturalhealth365.com/natural_healing/cancer-cell.html

 

February 16, 2013 by Jonathan Landsman  
Filed under Natural Cures, Natural Healing

Sat. Feb. 16, 2013 by Blanche Levine

Vitamin D(NaturalHealth365) It’s true – vitamin D kills cancer cells! Best of all, here is a medical report you can’t afford to ignore. Scientists have recently uncovered a so called experimental approach to treating inflammatory breast cancer (IBC), a rare and aggressive form of the disease.

The new approach uses the active form of vitamin D3, calcitriol, which is delivered by quantum dots to IBC tumors. Quantum dots are engineered, miniscule delivery vehicles which can maneuver directly to a tumor site.

New technology uses nature to destroy cancer cells

Our skin can actually manufacture enough levels of calcitriol (vitamin D) in as little as 15 minutes of sunlight per 24 hours.

What will hinder this process is sunscreen and how dark we are, the darker the pigmentation of the skin the more sunlight that is needed. Obesity, also curtails the circulation of vitamin D and age reduces the ability to manufacture vitamin D.

Vitamin D is found in foods, but the human body synthesizes most of this nutrient from sunlight. Since we now get so little in the way of unhindered sunlight, the new approch is to use Quantum dots and engineered light-emitting nanoscale delivery. The study shows that dots can be used to rapidly move high concentrations of calcitriol to targeted tumor sites where cancer cells are located.

They can go through the lymphatic system where the cancer finds its path to spread. So now calcitriol can fight cancer on different fronts. As more studies keep pilling up to support the notion that low vitamin D levels promote breast cancer – pharmaceutical companies are developing altered vitamin D molecules.

Low vitamin D levels could be a death sentence

Breast cancer patients with low levels of vitamin D have more aggressive tumors and poorer outcomes, a new study finds. Experts say the new findings support what many oncologists have long suspected.

“There has been suspicion that vitamin D is related to breast health in some way, although the particular pathway is still unknown,” noted Dr. Laurie Kirstein, a breast surgeon at Beth Israel Medical Center in New York City.

“Many oncologists are already following vitamin D levels in their breast cancer patients, and recommending supplements for low levels,” added Kirstein, who was not involved in the new study.

Researchers Jeremy Bonor, Rachel Schaefer, and Ania Nohe wanted to see if they could deliver high concentrations of vitamin D to tumors in mice using quantum dots. By the way, women with a low level of vitamin D at the time of diagnosis are 94 percent more likely to have their cancer spread and 73 percent less likely to reach the 10 year survival mark.

Nanotechnology works at the molecular level, and quantum dots are tiny light-emitting crystals that can be engineered to seek out a particular disease or type of cell. The quantum dots were used as an experiment with mice. So the advice of the medical experts is don’t run to the doctor for this yet, as it may take years to make this available to the public.

But, sunlight is available now to boost immunity; protect us from colds; the flu and now even cancer. So, let’s be honest, it can’t hurt to add (if needed) a high quality, vitamin D supplement to our daily routine. Help us spread the word – share this article with family and friends.

About the author: Blanche Levine has been a student of natural healing modalities for the last 25 years. She has the privilege of working with some of the greatest minds in natural healing including Naturopaths, scientist and energy healers. Having seen people miraculously heal from all kinds of dis-ease through non-invasive methods, her passion now is to help people become aware of what it takes to be healthy.

Sources:
http://www.eurekalert.org/pub_releases/2013-02/aiop-qdd020113.php
http://health.usnews.com/health-news/family-health/cancer/articles/2011/...
http://www.vitamindcouncil.org/quantum-dots-deliver-vitamin-d-to-tumors-...

SUBSCRIBE TODAY! Click here to join the NaturalNews Inner Circle – a monthly (online) subscription offering exclusive audio interviews, video events, natural health product discounts, free gifts plus much more!

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

Login or register to post replies.

BernieB's picture
Replies 10
Last reply 2/25/2013 - 11:21pm

 

I am looking for input.
This is my situation.  I was diagnosed with a T2 melanoma with a negative Sentinel lymph node in 2006.
No issues till just before Christmas 2012 when I found inguinal lymph node.
Pet scan was positive for a hyper metabolic inguinal load otherwise negative. MRI was negative. I had a inguinal lymph node section, the original note that I felt was positive in but all the other nodes, 14, when negative
I am otherwise in good health, do not feel sick, and 69 years old, working full-time, so what do I do?
The adverse events with interventions sound really bad. Is waiting for the next recurrence and then intervening reasonable?
Getting a genetic marker for my melanoma is certainly a painless step.
BernieB

Login or register to post replies.

Marcia1's picture
Replies 3
Last reply 2/17/2013 - 10:42pm
Replies by: Janner, NYKaren

Thanks to everyone who responded last week when my mother was in the hospital for dehydration and uncontrollable diarrhea.  They didn't use the Rimicade (sp.) but seemed to get it stopped with steroids.  Then she didn't go for 4 days and they gave her Go Lytley - sent her home this past Tuesday and now she's back in the hospital with a blood infection, renal failure and checking for cellulitis.  Her legs swelled up so much they were draining thru holes in her leg.  She doesn't feel really sick, but is weak.  I don't know if all of this came from the Yervoy treatment or not.  She's pretty much decided not to have another treatment, which the doctor did want to give her.  She'll be 87 this Thursday.

Login or register to post replies.

good pet scan and brain mri yesterday.

only one small spot at suv 3 left. stable from 3 months ago.

zel goes on at half dose, prednisone stopped.

4 years down the road since stage iv diagnosis. Never thought i'd make it that long when it started....

Also never thought my straight scandinavian hair would turn into a beige-greyish version of the haircut of Michael Jackson young.

 

Beatrice stage IV

Login or register to post replies.

cld's picture
Replies 8
Last reply 2/17/2013 - 12:00pm

3 months clear...not a long time i know,  but we all start somewhere, right?

Login or register to post replies.

betsy's picture
Replies 7
Last reply 2/25/2013 - 7:09pm
Replies by: Anonymous, thrashter, MaryD, betsy, kylez, Becky

My husband was diagnosed stage 3c nearly 4 years ago. After a year of interferon treatment, he is nearly 4 years NED. We attribute this largely to finding the right doctors immediately, and an aggressive melanoma surgeon.
We are now faced with the possibility of changing to kaiser insurance. I know we have to use kaiser doctors only, if that happens. Is anyone here a kaiser patient in california? We're near San Francisco.
Thanks.

Login or register to post replies.

dian in spokane's picture
Replies 21
Last reply 3/1/2013 - 11:06pm

Hi,

I'm not sure I need to give my history, but I will, briefly, just for s*it and giggles. I've been on this board, on and off, since 2003

I was diagnosed with my 1st melanoma 30 yrs ago this month, a shallow spreading surface melanoma. Followed by another and an in situ the same year, 1983.

In the early 2000's I develeoped a hard lump at the site of my previous in situ scar, which raised the scar itself up, and for a year and a half my derm told me it was a keiloid. But eventually I insisted he remove it, and I was diagnosed with stage IIIB melanoma, There were some satelitte lesions, in transit, but no lymph node basin involvement, so no LND.

I did interferon for 10 months, forced off by side effects involving my lungs.

I was NED  then from that point to late 2008, when I developed a couple of subcutaneous tumors in my left leg. The first was removed, the second, removed with tissue collection and sent to HOAG in california, where I entered a vaccine trial (MACVAC) I finished that in late 2010, but had a small tumor growing in my lung already..which did not light up the PET scan until my November 2012 PET (we traced it back on the scans and had been monitoring it all along, but it was not PET reactive)

Because of my history of single nodules and slow progression, we opted for SBRT, high dose radiation therapy, to remove that small tumor, and I did that in December. If you are interested in that, I'm sure the description of my radiation experience is still on the board and searchable through my name.

That's about the most concise history I've ever given, and it brings us up to date.

I had PET/CT a week ago and got my results on tuesday. That radiation seem to have worked on that one spot, but another has arisen in my right lung, and an equivocable one on my left lung.

I'm still feeling fine but have decided I need systemic treatment. I've been doing a lot of research....as much as I could get done between my tuesday appt with the radiation oncologist, and my thursday appt with my medical oncologist. I've been looking at trials in my own region, and also talking to some people about IL 2.

My plan was to, first, see what my own oncologist had to offer and discuss. Since we are not at a big melanoma center, and he has no trials in the game, I always feel like he has my best interest at heart, and his past actions have shown me that too. So I always like to hear what he has to say before I start throwing stuff out there. But, because we aren't really at a Melanoma center, my other plan was to see a specialist for a consult before I finish the whole decision making process. Just in case there are better ideas about treatment than My doctor and I can come up with here in spokane.

So I saw him yesterday and the first thing he did was ask me to confirm his thoughts that I had never had IL 2. I was kind of surprised, since I was kind of leaning toward IL 2 myself. He thinks it should be my first line of defense instead of my  last. He gave me good reasons. His chief reason is close to mine, that there's a chance, however slim, of durable remission. Also, though a tough treatment, it would be done soon, could be done here in town, leave me open for other treatments, even perhaps boost the efficiency of future treatments. Now long term side effects.

Anyway..before we got that far into the discussion, he told me that he wanted me to go to SCCA for a consultation at the melanoma clinic, but he thinks they will agree that I should try IL 2 first (!) But we are both open to the possibility that there might be something better that they might suggest.

Frankly, having done trials far from my own town, I know that it's not something I'm dying to do...though I could. I rather not bring huge debt on my family either.

I'm not making any decisions till I get all my info in, but I know there are plenty of folks on this board who have done IL 2...Yesterday I spoke to someone who had not even heard IL 2 mentioned by her doctor. So maybe it's a time we had an IL 2 discussion on this board.

I'm thinking now might be the TIME for me to do IL2

Dian

Login or register to post replies.

shep's picture
Replies 8
Last reply 2/25/2013 - 5:09pm
Replies by: JerryfromFauq, Anonymous, shep, NYKaren, POW

my daughter's 4 lymph nodes found to be sentinals two each under her arms were returned negative!!! her WLE from primary and 4 other dysplastic nevi all returned benign also. she was diagnosed melanoma positive on 1/22, had her SLNB and WLE surgeries on feb 7 and drove with us 5 1/2 hours south the next morning to help coach her sister thru her first child's birth... very proud of her. we were so worried because the radioctive isotopes only took 15 minutes to reach the sentinals. results came back on tues 2/12 and i burst into tears at the news. we are so thankful and am wishing well to all in this forum who have helped me get a handle on this disease. now she realizes how important it is to keep up on her nevi conditions.                                

                                                                 

Login or register to post replies.

Owl's picture
Replies 1
Last reply 2/17/2013 - 7:10am
Replies by: aldakota22

This week my husband had his 8 week scan and it shows good results. 2 of 4 mets have even shrunk by 50%, the other 2 are also smaller, nothing new, brain is clear. After the devestating news that IPI killed any mets except these 4 we are thankful that Zelboraf works, though more cautious, just hope that we will have a long-term response. The side effects were really bad in the beginning, that's why he had a Z holiday and after that reduced the dosage to 3-0-3. Now the side effects are manageable, a little itchy skin, little rash, little joint paint and he is taking something to bring the uric acid to a normal level. Doctors stick to the dosage, so we are prepared for the next 8 weeks, plan a little holiday (late honeymoon) and enjoy life.

My thaughts are with all of you, especially with the caregivers who sometimes seem to suffer even more!

Jenny

Login or register to post replies.

Janet Lee's picture
Replies 6
Last reply 2/19/2013 - 10:21am

Hello all.

Aftger countless hour and countless tears, insurance still refuses to pay for Zelboraf for my husband, soley because he is BRAF V600R instead of BRAF V600E. I now have to let this go, at least for a little while, to concentrate on fighting his disease and not the insurance company. I would however love to know how many of you out there are NOT BRAF V600E and still got the Zelboraf? Are other insurance companies paying?

Back to Dana Farber tomorrow (Friday 2/15) to start Yervoy/IPI. Side effeccts are scary. Prayers that Don responds to Ipi are more than welcome!

What else should we be thinking about in terms of treatments? We have put our trust in Dr. Ibrahim at Dana Farber, but I need to know about alternatives to ask her about.

Thank you all for your knowledge, help, support, and love.

Janet

Login or register to post replies.

Kim K's picture
Replies 4
Last reply 2/14/2013 - 9:20pm
Replies by: Bobman, cld, Janner

I am logged in, was working yesterday, and today all I get is a blank pop up with user as couple and I can't click on any buttons to fix it.....  I logged out then relogged in, made sure my pop up blocker was disabled.  HOW VERY FRUSTRATING!!!

Waving at Carole K & Libby......  Wish I could join you.

Cancer Sucks Shit Happens Nothing is ever 100% bad, there is a reason and silver lining in everything. Sometimes I need a good light and my glasses to find it though. You can't fix stupid.

Login or register to post replies.

bikerwife's picture
Replies 2
Last reply 2/17/2013 - 9:54pm
Replies by: Anonymous, jag

Does anyone know anything about either of these?

Temador and z?

abarxene breast cancer drug that seems to help with mel in body and brain?

What God leads u to he will. Lead you through

Login or register to post replies.

dolphin5's picture
Replies 1
Last reply 2/14/2013 - 6:56pm
Replies by: kylez

As I said on my prior post the decision was made to go with interferion, interlukin and three others with Dr Gailani at Kaiser riverside.  Two additional test were ordered prior to being admitted next week for her first stay/treatment.   Pulminary and stress test for the heart.  I know we asked why these two test but neither my wife or I can remember and I did take notes.  And finally as a care giver what can I expect or should I be prepared for when we return home?  I know someone has an answer.  Once again we want to thank for all of you help. 

Login or register to post replies.

HI Ef veryone,

I read below about all the difficulties getting into chat.  I am sorry I can't help. I am computer challenged.  Let me see if I can get in touch with the gentleman who did the website. 

I can't tell you how much I have learned in the past two nights from all of you who conisder yourselves newbies.  So much has changed witih Melanoma and boy do I need to educate myself on all the new treatments. 

Last nighti it was a pleassure to meet Kyle, John F, Margo, Becky Doro, alcijado  and so many more.  Please come and join us.  JUst so you know you can just go t into chat at any time.  Post you will be there. 

Chat and the board were my saving grace going through LUng and Brain Met.  I met incredible peopel filled with love and understanding , not to mention Knowledge.  Thre were times I would leave chat crying, not because I was blue or hurt . I was crying for all of the blessings this BEAST brought me. 

Each and everyone of us have different stories and oh how we can learn from each other,

PLEASE WHEN YOU COME INTO CHAT , everyone will probably say hello . IF I am there I will ask everyone to stop for a few minutes to give you a chance to ask questions.  Often times the subject is NOT Melanoma, and at times it is almost social media where people go to laugh.  Please do not be offended. Many of us have met and have known each othere  for many many years,  It is a wonderful ommunity of support

Yes, there will be some old timers there as well.  At one time I organized get togethers in Asheville Orlando, Michigan and others organized them in Dallas and a few other places.  My goal is to try to do this again.  Charlie S wants a get together out where I live on Long Island.  That would be nice but hotels are too expensive.  We shall see. I am suggesting California and Janner also suggested Las Vegas, which would be the least expensive place for everyone to get to. 

Please come join us and know WE ARE ALL IN THIS TOGETHER.  Hang Tough and as Young Trooper  Drew would always say.. IF GOD BRINGS YOU TO IT, HE WILL SEE YOU TO IT. 

Hope to see you tonight

LOVE AND LIGHT

Carole K

Login or register to post replies.

Pages