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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kim2712's picture
Replies 18
Last reply 4/27/2011 - 9:14pm

My son Erik was dx stage 3c in August of 2004 while in basic training at Fort Sill. He had a full neck dissection and did one year of interferon. He was going to University of Michigan. Loved the doc there and still do. On March 7th his right lung collapsed 100%. Full of fluid they put in a chest tube, after a week and several attempts to clamp the tube his lung failed to respond. On March 14th they did vats surgery and found hundreds of tumors in his lung, pleura, chest cavity and chest wall. They got him stable enough to go home (March 21st) and seek the care of a Melanoma specialist. We saw someone at University hospital in Cleveland, The Cleveland Clinic and his old doc at U of M. My son decided to go with his doc at U of M, stated "he cured me once he will do it again". The day after that appt. on March 31st  Erik started coughing up blood and was very short of breath, I was with him and called 911 to take him to the local hospital here in Toledo. After they put a tube in his chest, did scans, etc..The cancer had already spread into the diaphragm, ribs, muscle along the spine and one spot on the spine L1. Once they got him stabilized they took him by ambulance to the Cleveland Clinic. He spent 18 days there, once stable enough they started a treatment. 3 days 6 mcg interferon followed by 2 days of cisplatin, venblastine and dicarbozine. While there, after the treatment the horrible swelling started, first his abdomen, then all the way to his feet within a day. His poor testicles are the size of a cantaloupe. They did numerous scans, cancer spread again into liver and surrounding areas. They found that the inferior vena cava was compressed and thought that might be the reason for the swelling. They decided to do a procedure to put a metal stint in the artery, the compression was at the very top, widest point of the artery, so this was going to be tricky due to the risk of the stint going into the heart. After doing the fluoroscopy, they found there was still some adequate blood flow from that artery, a large tumor is the cause of the compression, because there was still blood flowing they didn't risk the stint. They decided due to yet more scans that likely the swelling is lymphatic and therefore nothing they can do other than wait and see if the chemo will do it's job. They allowed him to come home on April 21st. He has been pouring in the protein shakes in hope of reducing the swelling, no luck yet. He is also back to coughing up bloody phlegm.

I consulted with his onc at U of M because I trust him totally and can't get the answers I need from the cleveland docs. He said they are making a valiant attempt at saving him, and that's all that can really be done for him in his current condition. I asked him if he has ever seen anyone survive that is as advanced as Erik, and he said no. He thinks a couple months at most is what I have with my son. I know there are miracles out there and they happen every day. But I am so scared, how does a mother prepare for this?

Ughhh, I HATE this insidious disease....

Peace and blessings to all and thank you for listening.

Kim

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dawn dion's picture
Replies 6
Last reply 4/26/2011 - 10:49pm

Hello All!

So since I can't find anyone to chat with at 3 am (can't imagine why) I thought I would post instead!   I go for my first set of scans, since starting the GSK BRAF/Mek trial, on Thursday.   I know we all have "Scanxiety" and part of me really feels like everything is going to be "ACES" but then there is the other half that has all this wild crap running around in my head and I am just waiting for the Dr. to sucker punch me again.  To those of you who are "old pros" at this game, does this ever go away?  I know everyone says just live your life, but are you ever really able to make plans past tomorrow?  I catch myself doing so and then I think "oh wait".   Does this monster ever stop pissing you off?  Does every ache and pain ever stop freaking you out?   Do you ever stop questioning everything?   When you get to NED (where I hope beyond hope to be Thursday) or even stable, do you ever get a sense of relief? Or do you just sit and wait?  This makes me CRAZY!!!!!!   Even though this board scares the hell out of me sometimes I love it here because I know I am not alone - it's not like I can go wake up the hubs and say "so here's where I am" and truly expect him to understand.  He will try to understand, he will be compassionate and loving and tell me that he understands but I don't know that anyone else truly gets it.

So that's my latest rant - thanks for reading.  Much luck to all of you!

Hugs and Smiles

I refuse to let this beat me. I WILL NOT LEAVE MY GIRLS! MELANOMA CAN BITE ME!

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Napa K's picture
Replies 2
Last reply 4/28/2011 - 1:11am
Replies by: K in LA, stillhopeful

Does anyone have any experience or insight on radio frequency ablation in melanoma?  doctors you know of doing it? trials?  Trying to deal with a likely unresectable mass high in my right axila adjacent to the transition of the subclavian and axilary veins. No other known disease at this time and looking for something to do now, even if it is not a long-term fix.  Thanks for any info you may have in advance.

Hope is the most powerful drug

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Here's an article about Peg... Interferon.  It does sound much more encouraging.

http://www.aimatmelanoma.org/aim-for-answers/physican-blog/1822.html

 

Mary

Stage 3

Life is too short to be anything but happy. Falling down is a part of life, getting back up is living.

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LampChop's picture
Replies 14
Last reply 4/27/2011 - 2:10pm

Hi.  I am 38 years old and was diagnosed with Stage IIIB on my upper arm in May 2010.  I had two surgeries to excise the area.  Two lymphnodes removed, but no cancer found.  There were however micorsatellites in the excision area - hence the IIIB staging.  I met with MSK and the recommended "watch and wait".  I went to NYU and they recommended local radiation.  I had a month of radiation in October 2010 at Hackensack Medical Center in NJ because it would be easier to do than to go into NYU every day.  (I live in NJ and have a 2 year old.)

My recent CT scan showed something on my liver.  I had a follow up MRI which showed two hemangeomas (no big deal) and something else that is 6mm.   The radiologist noted it as atypical and suggested another MRI in 6 months.  My oncologist at Hackensack hasn't offered any other course of action.  I feel he isn't very proactive with me.  I feel like a number there.  I don't feel like I get the attention I deserve.  I hate calling the main number and pressing buttons to get to talk to someone, anyone. 

SO --- my question to all of you is --- how did you decide upon your melanoma oncologist?  Did you "shop" around?  Do you really like the practice?  The staff?  The doctor?  The nurses?  Did you travel a great distance to find "the best" doctor for you? 

Thanks for any insight!  I really need to find another cancer center and I guess I'm just looking for some insight into how others chose theirs.

- Kristin

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Melanoma Mom's picture
Replies 5
Last reply 4/27/2011 - 5:16am

I know there has been some discussion on the boards about pegylated Interferon recently. An article that Aim At Melanoma posted today makes me wonder if it would be 1) possible 2) beneficial to switch from the standard Interferon to the pegylated? Our son has four months completed of the standard  kind, finishing treatment in December. The major negative of peg. in my mind would be the long duration - five years - BUT if it were more beneficial at fighting off a recurrence, I believe we would easily accept that length. He has very little side effects from the drug so we would basically switch (if possible) because of any benefits from longer delay of recurrence.

Heading to Dana-Farber later this week for a check-up and wonder what they will say to this question ....

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dlraysin's picture
Replies 3
Last reply 4/25/2011 - 9:47pm

My brother was diagnosed in 2/11 with a spindle cell melanoma.  He had a lump on his chest that his family doctor said was a cycst for the last 5 years. He finally complained enough that the doctor removed the "cyct" in the office.  The biopsy came back positive for melanoma that was 17mm thick and was attached into the fatty tissue.  Of all things, I am a chemo nurse for an oncologist.  This happens to be one of the cancers that I have no experience with.  I went with my brother to see a surgical oncologist.  He said the the site would need be excised much larger with addittional biopsies and also to have sentinile node mapping done and biopsy the node.  This was expected.  After all of the reading I also expected that the nodes would be positive due to very large size.  I got the impression that the doctor also expected this.  Due to poor insurance coverage, he did not get a pet scan, but did get a ct scan.  Nothing was seen.  The additional surgery found the lymph node negative, there was a small part of the tumor left behind that was removed along with a 5 in circumfrance around the site.  The doctors are al puzzled, biopsies have been triple checked, because the tumor was 17 mm, but are not finding mets or positive lymph nodes (yet). We were told outright that he was at an extremely high risk for recurrance and mets because it is spindle cell and 17mm.  We were previously told by the surgeon that interferon would be standard of care, but would only lower the risk about 1%.  After being released from the surgeon, he was sent to a general oncologist who recommended interferon for a year.  My brother (age 40 with a 12 year old son) doesn't want treatment because he feels that it won't make a difference (was told only reduces risk 1%) and if it is going to return he doesnt want to spend a year being sick when he can spend it living.  As family, we are scared and frustrated.  I understand his feelings and will support his choices, but am also looking for addittional information that may provide better info.  I am trying to get him to get other opinions.  Does anyone have any experience in this (type and stage, size of tumor, kind of treatment, or refusal of treatment).  I would appreciate any and all comments.  I feel that I am a great nurse to my patients, but stink at it when it is family.

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Lisa13's picture
Replies 1
Last reply 4/25/2011 - 1:39pm
Replies by: Sherron

I was diagnosed with Stage 3b earlier this year. I'm leaving today to Montreal to go through the screening process for adjuvent ipi vesus placebo arm. I must admit, I'm still on the fence with 1 month HD interferon, but my oncologist feels this is the best option at this time.  There is lots of positive things about ipi for Stage 4, so I'm hoping (if I get the drug) that they'll be a benefit in keeping a reoccurence away for awhile.  Has this option been recommended by anyone else's oncologist over interferon??  

I hope that this trial is a great success so that it gives us stage 3 people more options and hope.

 

Keep the faith,

Lisa

Many impossible things have been accomplished for those who refuse to quit

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Replies by: Nicky, nicoli

I had radiation treatment in 2001 and again in 2005 for melanoma.  Both times during radiation treatment, I developed neutropenia which means that the bone marrow does not produce enough white blood cells (neutrophils) which can leave you open to infections and viruses etc and then my blood tests returned to normal after treatment

I have recently been feeling unwell and the doctor suspects I may have cyclic neutropenia which is quite rare and in "laymans terms" neutropenia happens quite often.  No-one else in my family have this, and I wonder if it could have been triggered by the radiation treatment, viruses, bacterial infections.  I have problems with my teeth and gums for the past five years, they always feel sore and I feel tired quite often, like my body is always fighting something.  I also have lymphoedema but that is under control.

I was wondering if anyone else has been diagnosed with cyclic neutropenia this long after cancer treatment, whether they have problems with their gums and are more susceptible to infections.

 

LOL.  Long term survivor 11 years NED

 

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chrisS's picture
Replies 28
Last reply 4/27/2011 - 9:34pm

On April 20 my beautiful 32 year old wife Melissa passed. We were married for 5 years and were best friends for 12. The world has lost someone who would never harm anyone and would go out of her way for everyone. We complimented each other perfectly. After may adventures living in tents, vans, moving to Maui, traveling cross country twice, buying our first condo, our loving dogs, I could go on for ever.

When I took her in to the ER last week after puking all night and not being able to communicate in the morning we found out she went from 6 brain mets to the most they have ever seen. Over 100 in 2 weeks. After pumping her full of more steroids for 2 days she woke up for 4 additional days. Even though she was mostly blind we all (fam and friends) got to spend some quality time with her. I slept holding her hand or in her hospital bed every night until she took her last breath. I thank God for those last days. We found out how she wanted to be celebrated, to donate her eyes and that she wanted people to honor her by planting a pine tree.

I am in so much pain.

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wgalinat's picture
Replies 5
Last reply 4/26/2011 - 12:39pm

All scans were clean and for the first time since the intense radiation damage from the trial, my

kidney "numbers" actually improved.  Yippie !   Now 10 years out from the primary, and 5 years

out the NIH clinical trial.  Keep up the hope !  It works !  Not a hero, but a survivor !   Warren G

"don't ever give up" "don't ever give up" ( the Jimmy V Fund for cancer research)

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Charlie S's picture
Replies 1
Last reply 4/24/2011 - 10:27pm
Replies by: Charlie S

What is hosted chat?  Nothing more than if you venture in, someone will be there to talk with.

Before the day when social networking was even a phrase, patients, family and caregivers would  come to MPIP and share, on a daily basis, the fears, questions,frustrations, hopes and anxieties of melanoma.

We were then, as we are now, still a bunch of orphans in many regards in the disease department and it is here that we would find community, understanding and comfort.

It should be no different now.

The cyber bar will be open, free and unlimited, as is the conversation.

So be ther Tuesday night.

Charlie S

Stage IV since 1996 and very undead..

 

 

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Terra's picture
Replies 1
Last reply 7/5/2011 - 12:21pm
Replies by: claudia-uk
Below is an article from OncologyStat.  This is the trial my husbnad, Derek, started 3 weeks ago.  He has a PET next week which will hopefully show something good - then scans at the end of the second month (28 day cycles) that they use will use to compare with the pretrial scans.  He is feeling pretty good, lots of anxiety and tension and I think fear, but side effects generally speaking have been a rash on his face that has been kept pretty much in control.  He has kept up with his pain meds but is going longer inbetween and missed one yesterday and didn't seem to feel the pressure in his sides from two of the larger tumours. 
 
 
 
 
Anti-MEK-PI3K Drug Combination Reduces Lesions in Solid Tumors
 
Elsevier Global Medical News. 2011 Apr 11, S Worcester ORLANDO (EGMN) -
 
Combined treatment using compounds that block two interacting and frequently mutated cancer pathways was safe and well tolerated, and demonstrated antitumor activity in a phase Ib dose-escalation study of patients with advanced solid tumors. Such combined approaches to cancer treatment are "likely the future of targeted therapy in cancer medicine," Dr. Johanna C. Bendell said at the annual meeting of the American Association for Cancer Research, where she presented early data from the ongoing study.
 
The two drugs tested by Dr. Bendell and her colleagues were:
 
• GDC-0973, a novel, potent selective MEK 1/2 inhibitor that targets the RAS/RAF/MEK/ERK signaling pathway.
 
• GDC-0941, a novel, potent, highly specific class I PI3K inhibitor that targets the PI3K/PTEN/AKT signaling pathway.
 
Both pathways are deregulated in multiple tumor types, and both agents have been shown in phase I trials to have suitable tolerability and pharmacokinetic properties. In preclinical models, concurrent administration of these agents showed improved efficacy, compared with the efficacy of either agent when administered alone, said Dr. Bendell, director of gastrointestinal oncology research and associate director of the drug development unit at the Sarah Cannon Research Institute in Nashville, Tenn.
 
In the current study, the combination was generally well tolerated in 30 patients who were treated on a once-daily 21-days-on/7-days-off schedule. The most common side effects were diarrhea (occurring in 90% of patients), fatigue (in 61%), nausea (in 61%), rash (in 50%), vomiting (in 33%), decreased appetite (in 17%), and taste changes (in 17%), but the vast majority were mild and did not differ from the adverse events seen in single-agent trials.
 
Furthermore, the pharmacokinetics of each agent did not appear to be altered by combined administration.
 
Six of 15 patients who underwent serial positron emission tomography at drug peak and trough concentrations showed a partial metabolic response to treatment, with at least a 20% decrease in the mean percent change from the baseline maximal standardized uptake value (SUVmax) at one or more time points.
 
Decreases in target lesions measurable by Response Evaluation Criteria in Solid Tumors (RECIST) occurred in five patients, including one melanoma patient with a wild-type BRAF(75% decrease), one melanoma patient with a BRAF mutation (27% decrease), one prostate cancer patient (21% decrease), and two non-small-cell lung cancer (NSCLC) patients with KRAS mutations (18% and 13% decreases). Four patients (two with NSCLC and two with melanoma) had stable disease for at least 6 months, Dr. Bendell said.
 
Dose escalation in this study was achieved using a unique 3+3 schema that allowed for increased dosing of each agent individually. Dosing began at two dose levels down from the maximum tolerated dose of each agent (20 mg and 80 mg daily of GDC-0973 and GDC-0941, respectively, in the first cohort), with dose increases in one drug at a time in consecutive cohorts. At the time of Dr. Bendell's presentation, dosing had reached the level at which drug activity had previously been seen in the individual drug studies, and dose escalation was ongoing to determine the maximum tolerable doses.
 
"Combining these agents is a very exciting thing for us in treating patients with cancer with targeted therapies," Dr. Bendell said, explaining that blocking two of the most commonly abnormal pathways in cancer cells has the potential to block each pathway individually as well as to prevent the "cross talk" between the pathways, which can lead to primary or acquired resistance to single-agent single-pathway therapy.
 
Seen within these pathways are mutations that cause upregulation leading to cancer cell proliferation, survival, invasiveness, and enhanced metabolism. Additionally, these pathways are downstream of many validated oncology drug targets including HER2, endothelial growth factor receptor, and KIT, she explained.
 
A particularly promising finding is the tolerability of therapy; there was concern that blocking two pathways instead of one would make treatment too toxic for patients, but that doesn't appear to be the case. "We're very pleased to find that we could do it safely - and with antitumor activity," she said.
 
As for whether this combined treatment approach represents the "elusive anti-RAS therapy" that researchers have been seeking for 3 decades, Channing J. Der, Ph.D., of Lineberger Comprehensive Cancer Center, Chapel Hill, N.C., the discussant for Dr. Bendell's presentation, expressed skepticism.
 
Although this is a very promising study that adds to the available evidence supporting a combined MEK-PI3K inhibition approach for RAS-mutant cancers, a great deal more work needs to be done, he said.
 
"We've been here many times before with promising and exciting preclinical studies only to be disappointed when we get to clinic ... so I believe the search for the elusive RAS inhibitor will probably continue.
 
"I hope I am wrong," he said. Genentech sponsored the study. Dr. Bendell said she had no relevant financial disclosures. Dr. Der disclosed relationships with GlaxoSmithKline, Millipore, Bristol-Myers Squibb, and Sanofi-Aventis.

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boot2aboot's picture
Replies 13
Last reply 5/3/2011 - 5:25pm

 

wanted to update everyone...i got my axillary lymphadenectomy on thursday...dr said my tumor was around 4cm...she said there was only the one tumor and she got good clean margins...my surgery lasted longer than expected, but i am told by others this is a good sign because it means they kept looking but didn't find any new cancer tissue?...won't have path results back on tumor until i go get my drainage tube out may 3rd...i am not too sore unless i move my arm a certain way then yow-wee! feels like i am ripping something out...

boots

don't back up, don't back down

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nicoli's picture
Replies 1
Last reply 4/24/2011 - 11:11am
Replies by: Janner

Hello,

Such a simple question that I asked my oncologist and surgeon but I can't seem to get a clear answer.......

When a pathology report says "there is no sign of metastic disease", does this just mean there is no TUMOR or does this mean there are NO CANCER CELLS? 

I first questioned this when I had my neck dissection to remove 23 lymph nodes. One showed "signs of metastic disease" and listed no dimensions of a tumor.  I asked my oncologist at the time what exactly that means and she said that she would have to call the lab to get the answer and she never got around to it. (which is one reason why she is my "first" oncologist!)

Thanks,

Nicki, Stage 3b, diagnosed December, 2009, scalp, surgeries (3), local recurrance October 2010, biochemo, currently radiating my scalp to (hopefully!) prevent recurrances.

Be strong and take heart, all you who HOPE in the Lord. Ps. 31:24

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