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
Erica A's picture
Replies 4
Last reply 8/8/2011 - 8:50am

Per suggestion for some encouraging stage IV news I am happy to report that my husband Ken had his 6 year NED anniversary this summer from stage IV!  Ken did the standard bio-chemo treatment at the time and all the details are in my profile.  It was a long journey, but today other than the once a year oncologist appointment and the physical scars - Ken is able to live a completely normal and cancer-free life.  I was always on this board when Ken was sick desperate for anyone who had survived stage IV cancer - I am hear to tell you that they do and you can.  There is always hope and people do go on to return to their lives.  Our thoughts are always with this community, feel free to email me any time with questions or just for support - we've been there and we understand.  Erica & Ken

Login or register to post replies.

AZ_Gal's picture
Replies 4
Last reply 8/8/2011 - 1:19am

Ok, I know this topic is for mainly women but I wanted to see what anyof you have done to deal/cope with the uneven breasts after and SNB.

I used to be a perfectly even C cup now the side that they removed my 4 lymphnodes is significantly smaller than the other side.

 

ANY ADVICE???

Login or register to post replies.

Combo Therapies Tested to Overcome Drug Resistance in Melanoma Patients

ScienceDaily (Aug. 4, 2011) — About 50 to 60 percent of patients with melanoma have a mutation in the BRAF gene that drives the growth of their cancer. Most of these patients respond well to two novel agents being studied in clinical trials that inhibit the gene, with remarkable responses that are, unfortunately, almost always limited in duration.

In a study published August 2 as a Priority Report in the peer-reviewed journal Cancer Research, scientists at UCLA's Jonsson Comprehensive Cancer Center tested a combination of small molecules that may, when used with the BRAF inhibitors, help overcome this drug resistance and extend the lives of those with advanced melanoma.

The team, led by researcher Dr. Roger Lo, focused on testing only small molecules that are already being studied in various phases of clinical trials in the hope of developing a combination treatment that can be studied in patients much more quickly than compounds that aren't yet being tested in humans.

"These molecules we tested are already being studied in patients with other cancers, and some of them have very good toxicity profiles with few side effects," said Lo, a Jonsson Cancer Center researcher and an assistant professor of dermatology and molecular and medical pharmacology. "The idea was to combine some of these with the BRAF inhibitors and come up with something that we don't have to wait years and years to use in patients. We need to find a way to combine these molecules so the cancer cell cannot get around them."

This study builds on the discoveries from a previous study published by Lo last year in the journal Nature. That study found that subsets of melanoma patients with BRAF mutations become resistant to BRAF inhibitors through either a genetic mutation in a gene called NRAS or the overexpression of a cell surface receptor protein.

It had been theorized that BRAF was finding a way around the experimental BRAF inhibitors by developing a secondary mutation in the same gene. However, Lo determined that was not the case, an important finding because it means that second-generation drugs targeting BRAF would not work and therefore should not be developed, saving precious time and money.

Lo and his team spent two years studying tissue taken from patients who become resistant to try to determine the mechanisms that helped the cancer evade the inhibitors. In the lab, they also developed drug resistant cell lines, in collaboration with another UCLA lab headed by Dr. Antoni Ribas, also a Jonsson Cancer Center researcher. There are still other mechanisms of resistance in melanoma patients with mutated BRAF who are treated with BRAF inhibitors, which UCLA researchers are seeking to uncover and that may provide even more targets for drug therapy. Cancer operates similarly to a criminal seeking to evade his captors, and the small molecule inhibitors are like the police barricades that seek to block escape. When one of the cell signaling pathways driving resistance is blocked, the cancer finds a way to activate another pathway that will drive its growth. If that pathway is blocked, yet another pathway may be activated. The goal is to find a way to block all the pathways helping the cancer evade therapy at once so the cancer cells die before finding a way around the drugs.

In the lab, Lo and his team would apply one drug at a time to the resistant cancer cells and see what route or pathway the cancer used to escape. They then determined what pathway was being used to evade therapy and found an inhibitor for that. In the end, the researchers identified the most optimal combination of molecules to block the pathways PI3K, mTORC and MEK.

"Normal cells have physiologic safety mechanisms to avert death and this is taken to a higher level by the cancer cell to serve its growth agenda, making single agent targeted therapy insufficient," Lo said. "We have to block several roads, which is what is behind our approach to developing combination therapies. The key was to figure out how to combine the molecules so that the cancer cannot get around them. Why wait for the cancer to escape? Let's block all the pathways right from the start."

Lo said this study highlights the need not only to identify mechanisms of acquired resistance to targeted inhibitors, but also to understand the signaling network associated with each mechanism to generalize potential translatable approaches to overcome drug resistance.

Once the right combinations of drugs were used together, the inhibitors "consistently triggered cell death in a highly efficient and consistent manner," the study states. "Together, our findings offer a rational strategy to guide clinical testing in pre-identified subsets of patients who relapse during treatment with BRAF inhibitors."

Lo said a clinical trial could be planned that first examines the patients' cancers to identify the resistance mechanisms at play. Those patients could then be funneled into a study pairing the inhibitors that target those specific pathways. Patients with other resistance mechanisms at work would be placed in studies testing inhibitors specific to their resistance mechanisms.

The next step, Lo said, is to identify all the mechanisms of resistance in this form of melanoma.

According to the American Cancer Society, melanoma incidence rates have been increasing for at least 30 years. This year alone, more than 68,000 Americans will be diagnosed with melanoma, with 8,700 dying from their disease.

The study was funded by Wesley Coyle Memorial Fund, Ian Copeland Melanoma Fund, Wendy and Ken Ruby, Shirley and Ralph Shapiro, Louise Belley and Richard Schnarr Fund, National Cancer Institute, STOP CANCER Foundation, V Foundation for Cancer Research, Melanoma Research Foundation, Melanoma Research Alliance, American Skin Association, Caltech-UCLA Joint Center for Translational Medicine, UCLA Institute for Molecular Medicine, Sidney Kimmel Foundation for Cancer Research, Stand Up to Cancer/American Association for Cancer Research, Fred L. Hartley Family Foundation and the Jonsson Cancer Center Foundation.

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.

eaca's picture
Replies 2
Last reply 8/7/2011 - 7:08pm
Replies by: Anonymous, FormerCaregiver

I put up a post a few weeks ago mentioning briefly this option, but now it looks like I have fulfilled the criteria and need to make a call on whether to participate in this clinical trial combining Pegylated Interferon and Melanoma Peptide Vaccine (for details see: http://www.cancer.gov/clinicaltrials/search/view/print?cdrid=638936&vers...).  I have pretty much decided to do the Pegylated Interferon anyhow, and so the question is whether to go ahead and do the vaccine as well in this trial.  I will be meeting with my doctor in 10 days to make the final call and would like advice as to what detailed questions I should ask.  I've read the clinical trial brief, but that's obviously very high level and this is my first experience thinking about participating in a trial.  Any advice from those who have done trials or looked at trial options would be greatly appreciated!

Elisa

Login or register to post replies.

Becky C.'s picture
Replies 6
Last reply 8/7/2011 - 4:01pm
Replies by: jimjoeb, Tim--MRF, Anonymous, MariaH, akls, washoegal

Hi, I would appreciate some other people's opinions about this. After having my SLNB, I had microscopic cells in the node, other node that was removed was clear. Both my oncologist and plasitic suregeon recommended removing more nodes. From some of the research I have done, some surgeons may recommend not going forward with the LND. I am afraid of lymphadema, but I also know there is no test to detect microscopic cells. I would appreciate feedback form anyone having a simolar situation as mine. Thanks

Login or register to post replies.

AZ_Gal's picture
Replies 14
Last reply 8/6/2011 - 7:55pm

Ok so I'm exactly one week away from my SNB and WLE and totally freaking out. Only had surgery once before and it was horrible. they told me i'd wake up with my husband next to me and i woke up sooner than planned he was there, the tube was still in my mouth, which meant i couldn't ask for him. and i was freaking out not knowing why i couldn't talk.

This time i have 3 beautiful children waiting for me at home. Thankfully my husband was able to get his FMLA put through so he could go the to surgery with me, and my mom will stay with my kiddos. but I'm still freaking out. it is all i can seem to think about. the what if crap is getting old. what if they find something? what if there is a complication? what if.... what if.... what if.... ugh!!!!

 

Any ideas on how i can get over the freaked out part of all of this?

 

Thanks guys!

 

Kim from Arizona

Login or register to post replies.

mombase's picture
Replies 10
Last reply 8/6/2011 - 2:01pm

This is just a general question, and this might be a figment of my imagine:

Are there lots and lots of folks who have been diagnosed as Stage IV that were declared free of disease years prior? For example, I had a lesion on my back that was fairly deep (can't remember the actual Breslow rating), it was removed and sentinel galns under both armpits were negative for disease.  I was told "congratulations", sent on my way, and no further treatment was advised. Three years later, melanoma brain tumor and lung tumors.

I know "the beast" is sneaky and resistant, but isn't there anything that dermatologists, nutritionists, etc. could advise to maybe alert a person that a certain lifestyle change might aid in helping the body fight off future melanoma?

I am thinking that there are a LOT of folks who are in the same boat. Not that the disease might always be avoided, but that we might have a better chance. I know this is not a medical judjment,  just a personal one!

Cristy, Stage IV

Getter done!

Login or register to post replies.

EricNJill's picture
Replies 4
Last reply 8/6/2011 - 1:53pm

These last two days have been unbelievably painful for me.  I miss him so terribly.  I am glad that he is at peace and rejoicing in heaven.  Now my battle begins...living on without him. 

Thank you all for your prayers and support during our journey.

http://www.legacy.com/obituaries/dayton/obituary.aspx?n=eric-jerome-sizemore&pid=152880705#.TjwMep5G82E.facebook

Because I was asked, here is a link to the Paypal Fund set up for our family.

https://www.paypal.com/us/cgi-bin/webscr?cmd=_flow&SESSION=IZ0He2TpNwyduRqOljgzD5oNqwvN9MgSv7B-Omm-nod2fJ-_O4iSxlrs6fO&dispatch=5885d80a13c0db1f8e263663d3faee8d1e83f46a36995b3856cef1e18897ad75

EricNJill in OH

Login or register to post replies.

Phil S's picture
Replies 8
Last reply 8/5/2011 - 9:13pm

While, the month of July proved to be challenging, when Phil's "routine" Pet/Cat and MRI scans at Dana Farber showed a lung nodule that turned out to be melanoma.  Just a quick recap, Phil's case is somewhat unique (mucosal, rectum) melanoma, and he had initial surgery in Feb 2010, then one year of interferon.  He did great on interferon, and we really felt it kept his aggressive melanoma (mucosal, deep primary, very high mitotic rate) at bay for the eighteen months he stayed at stage 3.  Others can disagree, and we will never know for sure, but two months after completing his year of interferon, the lung tumor was found.  Since, he was clean on all scans except for that one lung nodule, he had his right middle lobe removed on July 14th, and they got all the tumor and clean margins, no lymph node involvement. 

Phil is also Braf,C-kit, and HLA 02 negative, so future options are limited.  Stage IV NED, also limits clinical trial involvement, but we aren't complaining, thankful that surgery was an option.  We pushed for Leukine, and he is starting on Monday, praying that this drug can keep him stable for awhile.  We frequent this bulletin daily and get wonderful information and hope from all the people who share their experiences on this Board, especially Jerry (another stage IV mucosal melanoma case) who battles on, despite last year's fight with a horse.  Jerry is a true inspiration to us. 

We grieve with all those who have lost love ones to this disease.  We understand how everyone can and does feel sad, angry, scared, frustrated, disappointed, and hopeless when melanoma once again takes a front seat in their lives.  We truly emphasize with all the familes with young children (our kids are six and eight years old) and how fighting melanoma takes away part of their childhood, or at least part of the summer.  But, one thing I have learned in the past 18 months, is that people are resilient even children, and on a personal note, our kids are doing really well.  Phil is plugging along, lung surgery was fairly easy for him, and he is ready for the next step, hoping leukine boosts his immune system.  And, I have rallied too, after some dark moments especially at night, to again help my husband begin another battle with the beast.  Take Care!  Valerie (Phil's wife)

Login or register to post replies.

EricNJill's picture
Replies 57
Last reply 8/5/2011 - 5:31pm

I'm sorry I haven't been on here so much.  I just wanted to let you know that Eric is still here with us.  He is such a fighter.  He is less alert and his organs are slowing down but when he's awake he is able to talk to us.  I took some pictures of his leg last night.  They are very graphic and hard to look at.  His doctor said that the cancer is causing the tissue to rot. 

Thank you all for your prayers.  JillNEric

Video of pictures:  http://youtu.be/WhROjs27CDg

This is a blog post about the man I feel in love with:  http://www.melanomasucks.blogspot.com/

 

Login or register to post replies.

fgilbert63's picture
Replies 1
Last reply 8/5/2011 - 5:30pm
Replies by: MichaelFL

Just wondering if anyone has heard of this or used naltrexone.

http://www.lowdosenaltrexone.org/index.htm 

Frank

Login or register to post replies.

mombase's picture
Replies 2
Last reply 8/5/2011 - 4:32pm
Replies by: mombase, lhaley

I had my consultation with the Chief Radiation Oncologist yesterday at David Grant, who was very up front with me. He said since melanoma cells by their nature are resistant to light, he would need to do a much higher daily dose to be effective than if the tumor had been a primary brain tumor. Along with my sister, I made the decision to forego the WBRT for now and start with Yervoy as soon as possible. That way the Yervoy can act against any melanoma cells that might be hanging around in my brain, as well as start working on my lung mets. The rad onc said that he would be happy to go with WBRT in the future, or SRS, if  I need it.

I thought about this long and hard overningt and woke with a sense of relief. Not looking back!!

Cristy, Stage IV

Getter done!

Login or register to post replies.

carol b's picture
Replies 2
Last reply 8/5/2011 - 3:22pm
Replies by: lhaley, Fen

ok here it goes.. i know im a little late but my arm is still super sore.. i can use my arm from elbow down but thats it, one surgeon said they clipped a nerve and one said they didn't. we thought there was only one tumor but when the got in there it was 3 and they had fingers wrapper around everything, They cut out some of the muscle. They couldn't get it all but they did get most of it so we are hoping some more rounds of IL2 will get rid of whats left . i go monday to take out the drain tube hopefully. It hurts all the time. fluid id still pouring out of it so they may leave it in longer. I sure don't want lymph edema. they took off a tumor growing off of the outside of the skin and sent it off for a  biopsy. I get that report Monday too along with a PET scan. I pray the IL2 has worked on the other small tumors and they are gone. they will set up my next rounf of IL2 while i am there. Im starting to really dread those treatments. The last one was so scary cause my blood pressure dropped to 40/20 and had to bring in the crash cart but they give me a shot of something to bring up my blood pressure and it started working before they figured out how to work the crash cart... I Thank God for that... But it was so scary for my husband  and i was on the phone with my daughter when it happeren so she was freaking out too... But as for the surgery it went really well. no stitches except for the drain tube got sewed in so i wouldn't pull it out.. The incision was only about 3 inches long and the just glued it ant put stirrie strips on it but the hole is really deep, its not gonna look very good for a long time.. Trauma from the surgery hit about the second day, OMG was that awful , every muscle from my chest up was so sore, so if anyone has this surgery expect it.. the Dr says they to stretch you and move you head and neck in ways that they stretch all the muscles and it makes you very sore.. i was on morphine every 2 hours except for when i was sleeping so that helped alot. But even after 7 days im still  really sore,, Could be from clipping the nerve cause i cant raise my shoulder still..Anyway thats my story from my surgery,,Its the best i could do with drugs im on,, Now im on to step 3 now, i got to beat this, i cant stand much more. I dont want to give up . but voices in my head are starting to tell me quality is better than quanity... i love all you guys on here and pray for you all the time..I sure wish they would hurry up and find a cure for us...God Bless you all.

 

carol b

Believe all thing are possible, believe faith can move mountains, believe in the healing power of prayer and never ever give up on your dreams

Login or register to post replies.

Hi, I would appreciate some other people's opinions about this. After having my SLNB, I had microscopic cells in the node, other node that was removed was clear. Both my oncologist and plasitic suregeon recommended removing more nodes. From some of the research I have done, some surgeons may recommend not going forward with the LND. I am afraid of lymphadema, but I also know there is no test to detect microscopic cells. I would appreciate feedback form anyone having a simolar situation as mine. Thanks

Login or register to post replies.

Jydnew's picture
Replies 9
Last reply 8/5/2011 - 1:48pm

Hi,

I am so saddened by the recent posts on the board, and hope that my post can give a seed of hope to others who are facing their melanoma diagnoses. 

My husband had his last CT scan today at 1:00 and we got the results by 3:00 - No Evidence of Disease.  Thank you to the nurses, staff and doctors at the St. Luke's Hospital Cancer Center and the Imaging Center in Bethlehem for always going above and beyond for us.  For any of you in the Lehigh Valley, PA, or surrounding areas, I absolutely recommend this hospital.

Anyway, I just wanted to post the specifics of my husband's cancer and follow-up so that if someone is searching for a long-term survivor, they will find this post.  He was diagnosed Stage IIIA at age 26 back in January 2002, just a week after we returned from our honeymoon.  His lesion was 1.3 mm, Clarks level IV, not ulcerated - mitotic rate was not given back then...  It was on the tricep area of his right arm.  After the initial surgery to remove the mole, he had a wide excision and sentinel node biopsy.  Microscopic melanoma was found in 2 nodes - one had less than 2 mm deposit and the other had "not more than 10 loosely scattered cells."  Both were subcapsular.  He had a complete lymph node removal, no other interventions.  He had CT scans every 3 months for 2 years, every 6 months for 3 more years, and then every year since then.  He has bloodwork drawn every 6 months, visits his oncologist every 6 months and visits his dermatologist every 6 months.  He eats what he wants, but we rarely eat processed foods (not as a result of the cancer diagnosis, we just always have), he drinks lots of beer, he exercises regularly, and he gets a good nights' sleep.

Since 2002, he has earned a teaching certificate, a masters in education and has 5 years of teaching middle school under his belt.  We have traveled the country, have moved 5 times, bought a house, got 2 dogs, and have had 2 children, one who died before birth and one who was born prematurely at 28 weeks and is thriving at age 2.  There have been lots of ups and downs, but most importantly, there has been lots of living.

My best to you all in your journeys,

Wendy

Login or register to post replies.

Pages