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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I just had a sentinal lymph node biopsy in the groin and wide excision on the calf two weeks ago.  Several days ago I noticed a lot of pain on my inner thigh.  It feels a lot like a pulled muscle when I walk, but also very sore to the touch on my inner thigh about six inches below the groin incision.  At first I thought that maybe I did pull a muscle from walking funny after the surgery.  I had my follow up with my surgeon yesterday and mentioned it to him and he didn't seem concerned about it.  He did say it was strange because most people have some numbness, but not soreness.  So I just assumed I did pull a muscle.  However, today I was wearing tighter jeans and realized my thigh is swollen.  It is not very noticeable to look at, but I could definitely feel it wearing those tight jeans.  And when I got home and took them off, I ran my fingers over the sore area and felt a lump. 

I guess I am wondering if this is normal or if I need to go back to see him.  I have to go back in another two weeks to have my stitches removed from the WLE so I can bring it up again then.  I just don't want to have to schedule another appointment before then if it is not necessary. 

The good news is the SLNB came back negative!

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thrashter's picture
Replies 5
Last reply 12/28/2012 - 6:57pm

Was home for the holliday after my first week of Bio Chemo. The experience was okay rough but do able next round on the 3rd of January. 

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Josh's picture
Replies 6
Last reply 12/28/2012 - 6:17pm
Replies by: Josh, DeniseK, dellriol, Erinmay22, Anonymous, washoegal

Hello All,

There's a lot of serious talk here about serious symptoms, serious side effects, and serious outcomes. I'd like to share a more frivilous side effect if I may.

For about a year, I was on Zelboraf, and perhaps 6 months after starting the drug, my feet bagan to look really dry and, frankly, gross. For some reason, I didn't associate this with Zelboraf, simply thought that at forty years of age, I had turned into a man with very ugly feet. Having stopped Zelboraf two months ago, I'm pleased to report that my feet are once again gorgeous. Seriously, you've never seen such sexy feet. The moral of this story is that if you're on Zelboraf and your feet are disgusting, don't blame age or your moisterizer or even God. Blame the drug.

And a happy holiday to all!

Josh 

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What a great day. This is my second anniversary on these two life prolonging (saving?) drugs. No evidence of any tumors but one, and it is a little shrimp compared to when I started. Thank you GSK. Thank you MGH. Thank you doctors Chabner, Flaherty, and Lawrence. Thank you Phase 1 participants on BRAf alone, opening this door of life for us. Thank you FDA for allowing this trial using both drugs, for you also played a great part. Most of all I wish to thank my terrific brother, Dr. Martin J. Murphy, who knew about all this, and gave me the courage to have hope, and sent me off to Boston to get it.
John Patrick Michael Murphy
Colorado Springs, CO

The history of the world is the battle between superstition and intelligence.

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What a great day. This is my second anniversary on these two life prolonging (saving?) drugs. No evidence of any tumors but one, and it is a little shrimp compared to when I started. Thank you GSK. Thank you MGH. Thank you doctors Chabner, Flaherty, and Lawrence. Thank you Phase 1 participants on BRAf alone, opening this door of life for us. Thank you FDA for allowing this trial using both drugs, for you also played a great part. Most of all I wish to thank my terrific brother, Dr. Martin J. Murphy, who knew about all this, and gave me the courage to have hope, and sent me off to Boston to get it.
John Patrick Michael Murphy
Colorado Springs, CO

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sharmon's picture
Replies 5
Last reply 12/28/2012 - 1:13am

Hi,  Brent is at Moffitt this morning getting his third infusion of anti pd 1.  His pain is managed and his blood work is good.  Dr. Weber committed that he is seeing  30 percent or better response rate.  Brents 4th infusion is Jan. 16th and then scans on the 6th of February.  Keeping our fingers and toes crossed.  Prayers and Blessing for each of you.   Sharon

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Gwing's picture
Replies 7
Last reply 12/27/2012 - 6:47pm

Hi, I was diagnosed Stage 3a in 2005 and went through 4 rounds biochemo at UCCC.  Everything was looking really good after 2 years, so through IVF I became pregnant and had my first at the end of 2009, got pregnant again (unexpectedly/naturally) and had my second in March of 2011.  I haven’t had any scans since 2008.  My last head MRI was early 2009.  For a long time now, I always feel slightly buzzed or dehydrated.  I don’t know how else to explain it, my head feels a little heavy and I always feel on the verge of getting a headache.   I can’t concentrate well, am really forgetful and I feel my vision is splotchy or dark, or I will see things out of the corner of my eyes.  I have discussed this briefly with my Onc in the past and he said that its most likely chemo brain.  I am concerned that it may be slowly getting worse.  I can’t tell if it is, or maybe due to lack of sleep with my kiddos and all the hormones?  Shouldn’t I start feeling better?  Should I ask for another scan? 

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heg50heg's picture
Replies 7
Last reply 12/27/2012 - 12:23pm

Hello all, I am happy to announce my 2 year aniversery from being diagnosed stage 3 melanoma. I do not post much here but do check in once in awhile for information and updates on treatments and so forth. This site has helped me cope with this cancer for the last 2 years when I read some of the stories of others on this forum. From the first time I found out I had melanoma and my surgeon told me the survival rates and all I thought i was doomed. I have made 2 more Christmases and also am finally being able to not worry about mel all the time. My family Dr. just recently told me my chances of reoccurrence is very slim since i made it 2 years now, however the oncologist disagrees with that. Anyhow i am happy to be NED this long and hope it lasts for many more years. Thanks to everyone that posts here for peole to get so much info about melanoma, as i seem to find more answers here than I can at a Drs office. Happy new Years everyone and I hope every person on this site will be here next year to read my third aniversery post.

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JonathanB's picture
Replies 11
Last reply 12/27/2012 - 9:52am
Replies by: sFELDMAN, JonathanB, DeniseK, Anonymous, Swanee, jmmm, washoegal

I am a 47 year-old man, Stage IV, two young sons, determined to do everything possible to keep myself alive.

After a year of surgeries (primary excision on scalp, neck dissection, excision of various skin lesions), my latest PET scan from last week showed the melanoma has spread to my shoulder area and back of both legs (visible bumps), along with some yet to be determined small nodules in the lungs. My oncologist has run the BRAF gene test, determined that I qualify and wants me to begin taking Zelboraf (vemurafenib) this week. The question I have is: Should I press my surgeon to remove the visible turmors as quickly as possible, or should we wait to see if the Zelboraf is working, and ideally shrinking the tumors I can see protruding through the skin?

The information in this discussion forum has been invaluable to me and I sincerely thank all those who have contributed. The journey is difficult for all of us, but can be made easier by sharing helpful stories and information not always available from the medical community.

JonathanB 

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london22's picture
Replies 5
Last reply 12/27/2012 - 1:35am
Replies by: BrianP, Snickers60, vicuk, Swanee

I am the son of a woman, 63, diagnosed with melanoma. The melanoma is currently underneath the armpit and quite large (large marble). A CT Scan has come back clear although there is the smallest sign of cancer in the 8th rib. The Doctor has suggested Zelboraf for now. We are waiting for the drug to come through and may have to start a little chemo before we receive it (NHS UK). I am desperate for everything to be well. I lost my Dad when I was 15 and am 22 years old now. I am writing for support and advise about what we mght expect. I am unsure what stage my Mum should be placed under as it is ony in the 8th rib and not yet in any organs. I love her so much the panic sets in that I may be losing her. I need help and support from my new fellow warriors. 

Loved today and forever

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News

Merkel Cell Carcinoma Prognosis Linked to Vitamin D

 

IMNG Medical Media, 2012 Nov 7, B Jancin

Case Report Indicates Melanoma Treatment With Vemurafenib Can Trigger Leukemia

 

IMNG Medical Media, 2012 Nov 7, JS Macneil

Imaging Unwarranted in Primary Cutaneous Melanoma

 

IMNG Medical Media, 2012 Oct 25, S Worcester

More Evidence Links Tanning Beds to Skin Cancer

 

IMNG Medical Media, 2012 Oct 11, MA Moon

Dual Kinase Therapy Slows BRAF Mutated Metastatic Melanoma

 

IMNG Medical Media, 2012 Oct 1, S Freeman

SPECT/CT Before SLN Excision Improves Melanoma Survival

 

IMNG Medical Media, 2012 Sept 11, J Smith

KIT Inhibition Promising for Select Few

 

IMNG Medical Media, 2012 Aug 20, D McNamara

GSK’s Oncology Expansion Heavily Dependent on Dabrafenib, Trametinib

 

IMNG Medical Media, 2012 Aug 7, S Sutter
 

 

Expert Opinion

Dual-Targeted Therapies for the Treatment of Metastatic Melanoma

 

Interview by L Scott Zoeller, 2012 Nov 16, Igor Puzanov, et al
 

 

Journal Scans: Research

Deep Muscular Fascia Preservation and Locoregional Control in Melanoma

Free Journal Content

Surgery, 2012 Dec 4, TE Grotz, et al

Obesity and Risk of Malignant Melanoma

Free Journal Content

Eur J Cancer, 2012 Nov 29, TN Sergentanis, et al

Dabrafenib in BRAF-Mutant Melanoma Metastatic to the Brain

 

Lancet Oncol, 2012 Oct 7, GV Long, et al

Significant Risk of Skin Cancer Associated With Indoor Tanning

Free Journal Content

BMJ, 2012 Oct 2, M Wehner, et al

BRAF–MEK Inhibitor Combination Delays BRAF Resistance in Melanoma

 

N Engl J Med, 2012 Sept 29, KT Flaherty, et al
 

 

Journal Scans: Review

Epidemiology and Management of Uveal Melanoma

 

Hematol Oncol Clin North Am, 2012 Dec 1, Y Yonekawa, et al

Merkel Cell Carcinoma

 

Hematol Oncol Clin North Am, 2012 Dec 1, SY Han, et al

Antitumor Effectiveness of Electrochemotherapy

 

Eur J Surg Oncol, 2012 Sept 12, B Mali, et al
 

 
 

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

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Fen's picture
Replies 3
Last reply 12/26/2012 - 5:28pm
Replies by: bigb0624, Fen, dellriol

I apologize for taking up space for an unrelated issue.  I need to find a decent derm in St. Louis - not necessarily a melanoma specialist, just someone who is good who a relative can get to see quickly.  Anyone have any suggestions?    Thanks in advance.    Fen 

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o2bcheri's picture
Replies 7
Last reply 12/26/2012 - 5:22pm
Replies by: JakeinNY, o2bcheri, Anonymous, Tim--MRF, POW, buffcody

I saw this story posted on the FaceBook page for the National Cancer Research Foundation.. the creators of Cellect... the natural supplement that has been miraculous in treating cancer... 

thought i would share with you guys... This just happened this past weekend... its soooo exciting!!!  

 

 

Over the past weekend, we thought Andy was going to die from his lung cancer. He was having trouble breathing, doctors first thought it was pneumonia because he was diagnosed with lung cancer, Lippo Sarcoma, this past Memorial Day. Because Andy refused all treatments and only took Cellect, they told him he would die before the summer was out. Here we are approaching Christmas. He was having a difficult time catching his breath, we honestly thought it was the end for Andy, but he was still grateful because he lived longer than the doctors offered with their treatments. The doctor called in hospice care at the hospital. We were all upset because this was the end. 

Sunday after night, Andy was heaving and heaving, the doctors wanted to up the morphine to cause him to relax and die. While the doctors were trying to set up the equipment, Andy was having trouble breathing, and was choking, a team came in to clear the airway, then they saw something in his throat. Some tools, I do not know what they are, like long thin clamps, they pulled it out.

All of a sudden Andy started to inhale so deeply like he just finished a marathon, trying to catch his breath. But he was smiling and happy, it was not a struggle, after a few minutes, he was able to calm down and breathe more normally. The doctor said that he was breathing normal but that there was a lot of blood but pulse, and blood pressure were closer to normal.

They canceled the morphine and started to help him calm down. The oxygen levels improved and everything was improving a little at a time. The doctor said that it appeared to him that the lung tumor had started to die and detached from the lung area and Andy’s body was trying to get it out. Three hours later, Andy was able to eat a regular meal. 

This is similar to what happened in the past after he had a massage therapy. The doctors at that time thought it was coincidence. There is no way it was coincidence, now they are listening. 

Monday was a PET scan to see how the tumor was in his lung. Andy did not have any stress or pain. During the pet scan, the tech asked Andy many times if he had a tumor in the ling because he could not find it. When the tech went to older test results, he was able to see it. He would not comment at all to Andy. We did not care what the scan said because Andy was feeling great and was only interested in going home. 

As soon as the doctor came in, the tech almost ran to him, they disappeared. 20 minutes later, the doctor came back and told Andy that the PET scan does not show anything. The pathology confirmed that the tumor that came out was cancerous, and because there is no evidence in this new scan, he said it is safe to say that the tumor he coughed out was that same tumor. He said he never heard of anything like that before.

When Andy asked if he was cancer free, the doctor grabbed a chair and sat down and said that he has no idea what happened, but he did say that the cancer that came out was from the lung. When he saw all that blood, his first instinct was that the cancer grew massively and that the blood was a bad thing. Now he believes that the blood was caused because the cancerous tumor was dying and tore away from the walls in the lung, causing some blood and healed afterwards. He said he never saw that before. 

He said that he is being cautious, he wants to wait a few months to see what happens. Andy said that because the doctors told him during the Memorial Day weekend that he would be dead in a few months, he already passed his given time, so, he is patient and will wait.

Andy is still weak in his legs and arms because he was in bed so much. The doctor said that because there is no evidence, he was not sure what to do, so Andy said he wanted to go home. We brought Andy home last night. He woke up this morning and kept taking big deep breaths and now wants to challenge anyone. I think he is happy. He wanted pancakes and bacon with lots of maple syrup. He drank Tetley tea called British blend. He said that is Fred’s favorite. I don’t know if that is true. 

This morning, he declared that he no longer has cancer and will not return to his doctor for any tests. I think when he calms down, he will probably agree to non-evasive tests. I told him that he has to show the world that he is a survivor and that he will need to take those tests to validate it. 

This is a wonderful Christmas. To think that Andy was within minutes of getting a lethal amount of morphine to be put down like a dog. And here his cancer is out of his body. I wonder how many people had coughed up blood or tumor particles, or had pneumonia like symptoms and their doctors thought that it was increased cancer. Now we saw first-hand that it was the cancer breaking down and the body trying to get rid of it.

I hope that this update puts a smile on your face just like our entire family is smiling, it is the best Christmas present we could have ever received. Thank you Laurie and Fred, you saved our family

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POW's picture
Replies 11
Last reply 12/26/2012 - 1:14pm

My brother was diagnosed 6 months ago Stage IV with mets all over, including the brain. A combination of WBR and Zelboraf worked well for 5 months. Recently, a liver tumor started growing again and his oncologist said that he was becoming resistant to the Z. He is now off Z for a 30 day "wash out" period and then he will either get into an anti-PD-1 clinical trial (fingers crossed) or he will try try Ipi. Both of these treatments are based on monoclonal antibodies.

My concern is that melanoma that is resistant to Z often comes back more aggressive than it was originally. I think I'm beginning to see signs that his brain tumors are growing already (slurred speech, extreme fatigue, unstable walk) although this could just be paranoia on my part. My concern is that his tumors will grow so fast that he won't survive the wash out period plus the 4-8 weeks it takes these antibody-based treatments to exert an effect. But, really, what choice does he have? Any hopeful stories out there? Any suggestions?

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mel123's picture
Replies 34
Last reply 12/26/2012 - 11:08am

I'm curious about how many of us have a family history of melanoma; I personally feel like any cancer is part genetics, part environment, but I thought an informal poll of the melanoma community might be telling. I have a family history, but also have gotten sunburned several times and used tanning beds,  and I'm sure that there are people who only had one of those factors, or maybe neither. 

"For God has not given us a spirit of fear, but of power and of love and of a sound mind" 2 Timothy 1:7 melwithmelanoma.blogspot.com

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