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

I have a painful node sticking out of my right flank.  I can't see the surgeon until the 4th.  The pain pills are just so so.

Any hints?  anybody else have painful lesions?

thank you

Theresa

Stage 4

Every day is a miracle.

Login or register to post replies.

Kim41's picture
Replies 4
Last reply 3/26/2012 - 3:13am
Replies by: Kim41, gabsound, washoegal

Abnormal PET scan Feb 2/1/12. Post surgical changes seen in left groin. Questionable more slight density in left groin when current exam compared to last PET/CT. Some new areas of hypermetabolic activity seen in involving portions of the neck on the right side  and at the level of the right paratracheal region and right hilum and axilla are nonspecific. The spleen appears more hypermetabolic when compared to the last PET/CT scan. The possibility for progression of disease is considered.    My melanoma specialist said he is unimpressed by results of this PET scan. What do you fellow people think. It is March 23and I have been feeling very tired and weak in the last several weeks with pain in my right flank and in both right and left lung bases. Not sure if I should be concerned or not. I have my next scan May  23rd. Should I go to the doctor before that?. Also having pain on and off above both clavicles right and left. Mostly concerned about pain in lateral rib and back area. Has anyone else had this pain. Maybe its nothing to worry about. feeling so tired lately though. I would welcome some feedback. Thanks

         Kim

Login or register to post replies.

Moodypoodle's picture
Replies 12
Last reply 3/25/2012 - 8:06am

I'm posting for the first time though I've been lurking since my diagnosis in January. I'm impressed with the discussions I find on this board. Please bear with me since I haven't acquired the vocabulary yet.  In a nutshell: I had a non-healing (painful) wound on the ball of one foot for over a year. No history of diabetes. Lots of cultures. Finally a biopsy.  It came back amelanotic malignant melanoma. Clear scans otherwise (PET/CT, bone. bloodwork, chest x-ray). Surgery--mid-foot amputation last month....i'm still struggling with recovering from that one. It took a while to learn I was staged IIC because something was a 5 and something else a 4; even though the offending half of the foot is GONE!  The oncologist called me yesterday to say it was time to discuss treatment options and that the standard for my case would be interferon. We have an appointment (the earliest we could manage) for Apr 6 for an in depth discussion. Then just this morning I received an overnight UPS box of 4 vials of Sylatron (weeks 1 and 2).  AGGHHHH  I thought we were going to have a discussion and I planned to keep an open mind. Apparently she thinks this is a done deal. What I read online leads me to believe quality of life suffers greatly on this stuff for the better part of a year with questionable results. Everything in me is screaming no, no, no.  At my age, 71, quality of life is an issue!  Maybe I'm just scared or maybe I just need reassurance that I do indeed have a decision to make regarding this treatment.  Thanks for listening (!).  

Ann

Every Second Counts!

Login or register to post replies.

The results of my SLNB came back inconclusive again.  Doc said there was a positive stain for microscopic melanocytes, but nothing "extremely concerning".  He decided that no further treatment is necessary right now and has kept me at stage 2a.  I haven't had a CT scan or any further imaging.  Apparently he is presenting my case at a melanoma conference on April 4th.  Hoping a lot of great minds will shed some light on my situation.  I am sharing this in case someone has any brilliant insight.  :)

My inconclusive results again:

Sentinel node right axilla, biopsy:
One lymph node with S100-positive cellular aggregate of uncertain significance. Immunohistochemical stains of S-100, Melan-A, and HMB45 were performed on specimen B per the sentinel lymph node protocol. A single focus of S100-positive cells is present within a sinus immediately subjacent to the capsule on the initial level of the right axillary sentinel lymph node. This aggregate is not present in subsequent sections stained for HMB45 and the histiocytic marker CD-163.

Login or register to post replies.

ElaineLinn's picture
Replies 4
Last reply 3/25/2012 - 9:48pm

I know I am not good at posting but my eye sight is finally coming back after the surgery and chemo treatments. I went back to James cancer center this week and my blood test showed my liver function test were not good but everything else was. So I had to go for an EKG yesterday and back next week for more CT scans on my lungs and stomach just to make sure the cancer has not spred further. I had to stop my IPPI treatments to do the trial of Muskademess [not correct spelling either sorry]  so I will be doing alot of praying that the 2 treatments has stopped the growth on my lungs and will hold it off untill I can get radiation done on my brain which will take 4 weeks.  I am also praying that it is just all the medicine they have me on and the new trial that has my liver acting up and it goes back to normal so that I can have my radiation and start my IPPI back again.  I have not had any more seizures which I am so thankful for but I also have to take medicene the rest of my life for those. But that is ok as long as I can get through these tought times and hopefull  become NED . That is my goal as I am sure it is everyone on this board. I believe that God is really looking out for me and my faimly I can not tell you how blessed I am that God has gave me such good family and friends to help me through these tought times. I also know that no matter what God will be with me through it all good or bad and that helps me get thought the rough days. 

GOD BE WITH YOU ALL!

Login or register to post replies.

chermes55's picture
Replies 3
Last reply 3/24/2012 - 9:41am
Replies by: aldakota22, awg, WendyPam

Had my 8 wk brain mri and ct scan on tuesday and saw dr weber on wednesday. He told me that i had a huge reduction in the size of the 2 lesions on my liver. one went from 2.1 x1.5 cm to 0.8x0.6 cm. the other went from 2.3x1.4 cm to 1.4x1.2 cm. and many other hypodense lesions from the prior scan were barely perceptible on this one.  i was so releived to hear this news it was a great 30th birthday gift to get such great results i had been stressing about it all month. he said that they have been spoiled on this trial because of the high success rate in all patients. as far as side effects go i am a bit itchy and have had some minor rashes. on week 5 i had about 4 or 5 days of high fevers and chills which i was somewhat expecting from other peoples exp. yet was still a little scary. Dr weber said that it was normal and to expect them to come and go from time to time. after interferon this is nothing i had fevers everyday. i have returned to work about a month ago and even put in a few overtime weeks. i feel like myself again which is amazing. my energy level is good but after a long day at work a nap is still in order. this week was my 1 yr diagnosis anniv. and looked back on all i have been thru many lows and not so many highs but this week was definitely a high for me. my life has changed so much since my initial dx. it seems in the last few weeks that it is kinda getting back on track. i get another ct in a month so i will try to keep u guys posted.

 

stay strong we're gonna whip this thing 

Login or register to post replies.

somnamblst's picture
Replies 1
Last reply 3/25/2012 - 9:27am
Replies by: somnamblst

I don't know what is going on with my skin graft and wound. I wasn't expecting such a long postoperative experience and I am wondering should I be worried about how I have progressed. I am 54 years old, and the doctor told me I would do fine because I am young.

On Feb. 7 I had a wide area excision of a .4m melanoma on my shin. A full thickness skin graft was taken from my arm. I was scheduled for surgery the same day as the biopsy result. I had taken 4 ibuprofen, 15 hours before, the doctor said I might bleed more. My stitches were removed at 20 days. The nurse called the doctor in before she removed my stitches, and the doctor described the entire area being a very dark color as bruising. I began daily bandage changes. All seemed OK for about a week, when I detected a yeasty odor and exudate. Went in and my doctor told me that the center of my graft had sloughed off, but the edges were holding, and that I would heal by granulation. She said it did not look infected, but prescribed gentimicin.

I am doing 2X daily vinegar and water soaks, and using gentimicin topically for 2X daily dressing changes. The yeasty odor went away fairly quickly (pseudomonas?) Though my surgical pain had subsided the granulation phase has reintroduced pain. I have been doing this for 15 days now. I don't know what to expect, and don't know how to evaluate my experience. My exudate is a light amber color and can be almost nonexistent if I do nothing but lay around with my leg elevated. The pain has lessened, but  sometimes I feel a sharper pain, and worry about worst case scenarios with wounds that won't heal. I am not even sure if granulation healing is supposed to hurt. I don't go back to the doctor until next Wednesday.

(function() {
var po = document.createElement('script'); po.type = 'text/javascript'; po.async = true;
po.src = 'https://apis.google.com/js/plusone.js';
var s = document.getElementsByTagName('script')[0]; s.parentNode.insertBefore(po, s);
})();

Login or register to post replies.

bruski1959's picture
Replies 6
Last reply 3/27/2012 - 5:52pm

The third Yervoy dose came in Tuesday, but Jackie had another dehydration bout Monday evening requiring another 6 hour visit to the ER. IV fluids, IV steroids, IV anti-emetic, and oral anti-emetic. Also X-rays and a CT scan. We were back home in bed by midnight. Oh yeah but I hadn't slept much as I had gone along for moral support to pick up our pastor and his wife from the airport and got home about 4 AM Monday morning. Jackie was sent home on clear liquids and 60 mg a day of steroids. She found a way to sleep without medications causing confusion and inability to concentrate. Yesterday she progressed to bland food. The third Yervoy infusion has been rescheduled for Monday March 26th. Friday is Jackie's Heinz 57 birthday. The 4 doses of Yervoy have be given in a 12-16 weeks. Jackie still has had pretty severe fatigue, but seems to be gaining strength daily. We appreciate your thoughts and prayers as we continue to press forward on this battle with melanoma.

Thanks,
Bruce and Jackie

Login or register to post replies.

http://the-scientist.com/2012/03/20/prometheus-patents-overturned/

 

Personalized medicine just got a little harder to patent. Today (March 20), the United States Supreme Court decided that two diagnostic methods developed by Prometheus Laboratories to calibrate drug dosages did not meet the standards for patent eligibility, reported Reuters.

Synthetic thiopurines are administered to treat certain auto-immune diseases, such as Crohn’s disease, but patients must be monitored to optimize dosing while minimizing side effects. Prometheus’s methods rely on monitoring the levels of various metabolites in red blood cells. In 2004, the Mayo Clinic devised its own diagnostic tests based on different levels of these metabolites. Prometheus Laboratories sued in District Court, alleging patent infringement, and Mayo claimed in return that Prometheus’s tests relied on unpatentable natural phenomena. The Federal District Court upheld Prometheus’s patents, because the methods added treatment steps and used the natural correlation between metabolite concentration and toxicity in a specific application, reported Genetic Engineering & Biotechnology News.

But the US Supreme Court disagreed with this assessment and overturned the Federal District Court’s ruling.

“To transform an unpatentable law of nature into a patent­ eligible application of such a law, a patent must do more than simply state the law of nature while adding the words ‘apply it,’” the Supreme Court’s opinion, written by Justice Stephen Breyer, asserted. “We conclude that the patent claims at issue here effectively claim the underlying laws of nature themselves. The claims are consequently invalid.”

Lisa Haile, a patent attorney and co-chair of the Global Life Sciences Sector at the firm DLA Piper, predicted that the US Supreme Court would overturn Prometheus’s patents, but suggests that the addition of more “active” steps could render the methods eligible for patenting. Examples of “active” steps, Haile explained to The Scientist in an email, include comparing a patient’s 6-thioguanine concentration to a reference level and determining whether it falls within the therapeutic range.

Prometheus’s patents aren’t the only ones under scrutiny. Several other cases will be decided soon, including Myriad Genetics’ patents on the BRCA1 and BRCA2 genes. The court’s ruling will help determine how patents will be applied to personalized medicine, Courtenay C. Brinckerhoff, vice-chair of the Chemical, Biotechnology & Pharmaceutical Practice at law firm Foley & Lardner LLP, wrote in a recent opinion piece for The Scientist. Whether patents stifle development of new therapeutics, encourage innovation, help or hurt patients, is still unclear, said Brinckerhoff, and the Supreme Court may be approaching these questions on a case-by-case basis.

I'm me, not a statistic. Praying to not be one for years yet.

Login or register to post replies.

bikerwife's picture
Replies 1
Last reply 3/22/2012 - 6:54pm
Replies by: JerryfromFauq

We have made another milestone in our lifes. Our son was married Sunday Lynn was best man and overall looked really well. He was tired but other than that fine.
He says he feels really good. Some of the growths are scabbing over. How long does it take for them to disappear and how do u know if and when the ippi starts working. Doctor says process takes awhile guess I'm antsy.

What God leads u to he will. Lead you through

Login or register to post replies.

caratindell@comcast.net's picture
Replies 3
Last reply 3/23/2012 - 4:18am
Replies by: Anonymous, JerryfromFauq, Becky

Hi all! A friend has been diagnosed with oral cancer. This site has been invaluable as a place to learn, vent, and reach out to those with melanoma. Does anyone know of something like this site for oral cancer? I would appreciate any information that I can pass along. My direct email is:

caratindell@comcast.net

Thanks for your help!

Cara

Login or register to post replies.

kelsta78's picture
Replies 5
Last reply 3/23/2012 - 1:22pm

Hi all

Just wondering if anyone can help me out.  I got a copy of my original report and thought I would share if here to get some opinions. 

"Sections show Malignant Melanoma, Clark level IV, Breslow thickness 1.0mm.  There is pinpoint spot of ulceration measuring 0.1mm.  There i no vascular space or perineural invasion, no sesmoplasia, and no satellitosis.  Tumour infiltrating lymphocytes are present and there i no intermediate/late regression.  The mitotic rate of dermal invasive melanoma is 2 per mm.  There is evidence of an asoicated dysplastic juntional naevo-melanocytic lesion.  Excision of the lesion appears complete with the nearest peripheral margin to in-situ melanoma being 2.2mm, the nearest peripheral margin to the invasive component 2.5mm, the distance of in-situ melanoma extending down a pilosebaceous unit to the deep margin 3mm and the distance from the dermal invasive tumour to the deep margin 3.5mm".

I don't think my doctor even understood it very well as he has underlined half of it and wrote a question mark beside it!  This being the same doctor that told me there was nothing wrong with the mole and it didn't need to be taken out (thank god I insisted).

All I really understand is that it was 1mm thick and ulcerated.  So can anyone shed light on the rest of the report?

So far I have had the wide excision done and results were clear from that.  I am booked in for mole mapping in a few weeks time.  I go back to the surgeon on 4th of April for a check up of the area and he said he will organise a PET scan in a few months time.  I do wonder why wait? 

Thanks in advance.

Login or register to post replies.

gabsound's picture
Replies 1
Last reply 3/22/2012 - 2:41pm
Replies by: bikerwife

I recently came across a book that I feel has changed my thinking about cancer and given me AN ENORMOUS AMOUNT OF HOPE.

It's called "DYING TO BE ME" by Anita Moorjani

I thought this may help someone else-I read the book cover to cover in 4 hours and plan to read it again soon!

Peace and love to all,

Julie in Las Vegas

Here is a blurb off the Amazon.com site:

Book Description

Publication Date: March 1, 2012

 

     In this truly inspirational memoir, Anita Moorjani relates how, after fighting cancer for almost four years, her body—overwhelmed by the malignant cells spreading throughout her system—began shutting down. As her organs failed, she entered into an extraordinary near-death experience where she realized her inherent worth . . . and the actual cause of her disease. Upon regaining consciousness, Anita found that her condition had improved so rapidly that she was able to be released from the hospital within weeks . . . without a trace of cancer in her body!

     Within these pages, Anita recounts stories of her childhood in Hong Kong, her challenge to establish her career and find true love, as well as how she eventually ended up in that hospital bed where she defied all medical knowledge.

     As part of a traditional Hindu family residing in a largely Chinese and British society, she had been pushed and pulled by cultural and religious customs since she had been a little girl. After years of struggling to forge her own path while trying to meet everyone else’s expectations, she had the realization, as a result of her epiphany on the other side, that she had the power to heal herself . . . and that there are miracles in the Universe that she had never even imagined. 

     In Dying to Be Me, Anita freely shares all she has learned about illness, healing, fear, “being love,” and the true magnificence of each and every human being!

Login or register to post replies.

yoopergirl's picture
Replies 1
Last reply 3/22/2012 - 11:11am
Replies by: Maxximom

The eye doctor is still  going to continue the prednisone drops along with the dilating ones for 2 more weeks and he again said that I should not have the last treatment of ipi. The oncologist who first treated me with the ipi called today, actually his nurse did and they would like to follow my care along with Dr Mc Farland form UW Madison, she said that I did the right thing by going to a Melanoma specialist and that I can get into a clinical trial at Madison but not at their clinic. He is the head of research so I imagine he would like to follow my care, and I thought that was very good of him to do that and also said if I ever need anything done locally they would be happy to do that for me. So I guess I am covered in both places. Now just have to wait until the 26th for the MRI and car scan results, which I will have that same day.

Login or register to post replies.

HoolieB's picture
Replies 9
Last reply 3/29/2012 - 3:48pm

I stumbled across the site in a search and have been reading the wealth of wonderful information on this board.  One thing that caught my eye was a couple of responses that included (paraphrased) "...Clark rating is no longer considered important unless it's with a thin melanoma..."  All my searching here couldn't find an explanation for that statement.  I was hopeful somebody might be able to shed some light on the relationship between Clark numbers and thin melanomas.  My melanoma was Breslow "at least" .42, Clark III. 

Thank you!

Julie

"May the odds be ever in your favor."

Login or register to post replies.

Pages