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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ladyelaine's picture
Replies 4
Last reply 12/30/2012 - 4:42pm

Elaine Welch, Lancaster County, PA. 67 years old.
I had a mole on my left fore arm removed in 1976, tissue was lost, not tested. Within a year a bunch of freckles appeared where the mole was removed. When you're covered with freckles a few more didn't matter.
Over the next 7 years the area turned all colors. In 1984 I had a wide resection about the size of an orange off my forearm with plastic surgery. It was a Clarke Level 4. I had no nodes removed, no treatment, followed up for 3 years, no further issues.
In 2006 after years of heavy cycles I had endometrial cancer (uterus lining) and a hysterectomy. Nodes clear, no further treatments, no further issues.
This November 12, went to optometrist, needed new glasses. She found a tumor in my left eye. She wanted to wait 3 months and recheck. I went to my family doctor and he could easily see the tumor with a naked eye.
So now I will start this new journey on January 2 with an appointment at Penn State Hershey Medical Center.
So now you know what I know!
BTW, my father had his eye removed due to melanoma in 1970 at the age of 63. No further treatment. He died 12 years later from liver mets.
My big goal now is seeing my 50th wedding anniversary July 5, 2013.

Que Sera Sera

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koveleskie's picture
Replies 9
Last reply 1/2/2013 - 5:50pm

My sister has been on Zel for about 2 months, stage VI.   Tumors shrunk, but pain and fatigue have been bad.  She resists taking pain med and I can't get her to understand the importance of being out of pain to help her body heal.  She believes that no matter what, she is supposed to feel pain even tho dr's have told her they can control the pain if she follows regimen.  She has looked at this site but says she doesn't see where anyone else is having to take pain meds.  She is now on a pain patch but is still having a lot of pain.  Are others of you having much pain and how do you deal with it?  Thanks for any input.

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lou2's picture
Replies 14
Last reply 1/3/2013 - 8:24am

Can anyone recommend a melanoma specialist here?  I have an appointment with a doc in a practice that is described as skin cancer specialists, but seeing the background of the doc does not make me feel sure that this is really the best choice.

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rjcravens's picture
Replies 3
Last reply 12/29/2012 - 10:29pm
Replies by: DeniseK, Linny, michelleg

A couple of months ago I had this terrible bout of constipation and abd pain. Went to prim doc and he did ct scan. Showed only a couple cyst on ovaries and hiatal hernia with lots of stool in colon. Have never felt not bloated since then. Sun before Christmas started this nausea and vomiting every time I eat, normal bowel movements but terrible pain across left lower and each time I have one with a little mucus. Painful gas, spasm are awful. Vomiting all back up.. Craving tums and that chalky taste. Feel so short if breath with activity. Lower back pain. Should I be worried? Otherwise just tired. Any suggestions?

Also after almost two years I am getting feeling back in the back of arm. Problem is weird sensations of crawling or dripping followed by this total annoying pain that shots pain, comes and goes, take my breath away. Tried neurotin tid 100 mg, not doing anything. Any suggestions? I think I would rather it go numb again.

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melalisa's picture
Replies 4
Last reply 12/29/2012 - 1:45pm
Replies by: _Paul_, Liz C, Anonymous

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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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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Cindi W's picture
Replies 7
Last reply 12/30/2012 - 9:31am
Replies by: akkcak, Frannie55, scots, Cindi W, Swanee, Anonymous, chrisannca

This is my first time posting so I will give a bit of background.  I was diagnosed with Melanoma on the top of my right thigh in 2006, had it removed and was told that everything was good.  In Feb. 2012 I discovered a swollen Lymph Node in my right groin.  In June 2012, the lymph node was removed and was positive for Melanoma.  End of July 2012 I had all lymph nodes removed from my right groin all negative.  I started interferon treatment in August 2012, standard 4 weeks high dose IV and 3 day a week injections. Up until November 2012, everything about my treatment seemed reasonable and the side effects from the Interferon have been harsh at times but managable.  I have been able to continue working, but the fatigue makes for much shorter work days. 

In November 2012 I discovered that something was going on with my right great toe; since September it had what looked to be a bruise directly below the nail.  My oncologist did not seem alarmed, my toe was swollen, but not inflamed.  I was given a topical steriod/antifungal and after 1 week of use my toe looked infected.  I was diagnosed with Osteomylitis, hospitalized for 4 days with IV Vancomycin and Rocephin and continued IV antibiotics at home up until the 15th of Dec. when I developed an allergic reaction to the antibiotics.  I am now on my second round of Prednisone and have been diagnosed with Vasculitis and I am currently not receiving any treatment for the bone infection.

December 2012, I had my 6 month PET Scan which indicated activity in several areas of lymph nodes, but I have been told that is a normal side effect of interferon by my oncologist.

I guess I am wondering if anyone else has experienced any of these secondary issues during Interferon treatment.  Also, this is very trivial considering everything else, but the hair thinning is becoming hair loss....does anyone know if this continues for the full year of treatment? I certainly don't mind shaving what little is left, just curious to know if it will grow back during treatment.

By the way, I am 44 years old married for 26 years; our son is 25 and our daughter will be 18 in Jan. and graduating high school this spring.

 

Thank you!

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swissfarm7's picture
Replies 7
Last reply 12/29/2012 - 12:44am

After my husband's Stage IIIB diagnosis this past summer, he went to Seattle Cancer Care Alliance/University of Washington Medicine, and we were in very good hands.  His follow-up care is local, and I feel far less confident about the care.   Example:  He had a CT scan done a couple of weeks back.  (He had his first scan at SCCA and will have one every six months for the next couple of years.)  The week after the scan, he had an appointment with the oncologist.  They discussed how things are going with the interferon, but the doctor made no mention of the scan until I brought it up.  He said everything looked good. 

Yesterday I accessed the scan results myself.   The summar of the findings are as follows ~ I've highlighted the portions that raise a red flag for me:

1) Three statisticall benign pleural and sub-pleural nodules as detailed above.  Follow-up noncontrast CT chest CT in 6 months may be performed for further evaluation, as clinically indicated.

2) Irregularly marginated soft tissue density within the left axilla surrounded by multiple surgical clips.  This is nonspecific but may represent residual or recurrent disease.  Postoperative changes could have similar appearance.  Clinical correlation is advised.  CT directed biopsy may be performed for further evaluation, if clinically indicated. 

Alert: Unexpected findings.

* * * * *

To me, these are not "everything looks good" findings.  (Hmm...sorry this is still bolded ~ and italicized, too.  I can't seem to change the font.)  I emailed the oncologist with my concerns.  He replied to the effect, "Yes, we'll have to talk about it at the next appointment."  My confidence isn't increasing here.  It's like...Did he even read all the findings before or what?  Beyond that, the findings themselves concern me.  What are your thoughts? 

Cheers,

Colleen

Keep on keeping on.

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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

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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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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meldad's picture
Replies 4
Last reply 12/29/2012 - 7:54pm
Replies by: dellriol, meldad, Josh

Hi everyone,

This is my first time posting but I come on here almost daily to read everyone's updates.
My dad has been on Zel for about 5 months and has had most of the side effects everyone has posted about. The past week or so his had a sore/swollen knee. I'm just wondering if anyone else has experienced this? I know joint pain is very common while on Zel. His having a scan on his knee in about a weeks time but I just worry about every little thing now.

Hope you all had a lovely Christmas!

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DeniseK's picture
Replies 11
Last reply 12/29/2012 - 11:02pm

Well I met with oncology radiologist today, all my doctors agree to do WBR. There is just one brain tumor but they're afraid there are other cells that could start growing. He said WBR can be done again in about a year and gamma knife or SRS can be done in a month or two if the WBR doesn't kill the one tumor completely. I didn't want to do WBR but I'm confident my doctors are doing what's best. Hopefully this will work with the zelboraf. Still waiting on the z.

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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Erinmay22's picture
Replies 4
Last reply 12/30/2012 - 11:20pm

Just curious what supplements folks are still taking while on ipi. I have completed all 4 doses (and last scans showed growth of a lymph node). I've asked my doctor about this but haven't really gotten a straight answer. Right now I've been taking an iron supplement (last may was very anemic). I'd like to start taking b complex again and vitamin d. I asked about getting vitamin levels again checked but again haven't had a response yet from my doctor.

Hope everyone had a great holiday.
Erin

www.melanomaandthecity.blogspot.com "people will forget what you said, people will forget what you did, but people will never forget how you made them feel' Maya Angelou

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