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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Anonymous's picture
Anonymous
Replies 6
Last reply 3/12/2012 - 6:51pm
Replies by: Anonymous, LynnLuc, MissJenn, Erinmay22, Janner

A couple of weeks ago I had a wide excision done on a mole on my back that was 1mm with clarks level IV.  The pathology report for the tissue around the mole was clear (thank god).  So now my surgeon says to wait about 6 months and get a PET scan done.

I was thinking about things and realised that a couple of months before I had the mole removed I had a swollen gland under my armpit that was swollen and painful for about a week and a half.  I had totally forgotten about that so didn't tell the doctor about it.  I didn't get a SNB done at the time as my doctor said it was no necessary for my level and did not affect my long term prognosis.

I realise swollen glands can be a sign of alot of things, like stress etc.  My friend had them on her neck and the doctor cut out a suspicious mole on her back thinking it was Melanoma because of the swollen glands that she still gets.  But luckily for her it was not that.

Should I call the doctor about this?  I have an appointment in 3 weeks time to see him again to check the area.  Thanks for your advice, I am now checking this forum all the time to educate myself. 

Also does anyone on this forum recommend a melanoma specialist in Brisbane Australia?  The doctor I am seeing is a surgeon but not a Melanoma specialist so I would like to swap my ongoing care to somewhere that specialises.

Thanks

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I had to nap at 10:30 am this morning a few minutes after taking my 4 zelboraf pills.

feeling dizzy and a bit weak only 5 days after having started the treatment. 

is that normal? Does the fatigue wear off and one gets used to the medicine?

Or am I preparing an allergic reaction to the stuff (like I did to sorafenib)?

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I think this is what Jimmy B has been saying!  Ipi and radiation!

From today's article on MSNBC: "New Melanoma Treatment - a turning point against cancer?"

 http://vitals.msnbc.msn.com/_news/2012/03/07/10602724-new-melanoma-treatment-a-turning-point-against-cancer

Valerie Esposito, a 42-year-old mother of three, was taking ipilimumab for advanced melanoma and it wasn’t working very well. The cancer was spreading through her body.  One huge tumor, in fact, was pressing on her spine. To relieve the pressure, her doctors at Memorial Sloan Kettering Cancer Center in New York radiated the lump. Within weeks, other tumors throughout her body started shrinking dramatically. 

Our experience with melanoma: http://emandmichael.wordpress.com/

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edamaser's picture
Replies 7
Last reply 3/12/2012 - 6:25pm

Hi All,

I have metastatic Ocular Melanoma, and have been fighting mets in the liver for 9 years.  I have mets in the liver, lungs, peritoneum, abdominal wall, and more. 

I would like to share with you something that has come up recently for me as a consequence of metastatic cancer that I never heard of before. The condition is hypercalcemia--too much calcium in the blood. In my case, I ended up in the hospital for 3 days while they figured out the situation and what to do about it. They think it is caused by the melanoma itself, which releases some substance that encourages calcium to be leached out of my bones. For anybody this is pretty serious, but for an old lady like me, it's scary. I will end up getting zometa, which only will slow down the leaching. Nothing can replace the calcium already leached out. Be sure to note that I do not have any bone mets, if my hypercalcemia is caused by cancer, it is all soft tissue cancer.

They checked out and rejected the most obvious cause, parathyroid involvement, and probably other possible causes, but settled on cancer as the default hypothesis.

The possible symptoms of hypercalcemia are wide-ranging: for e.g., confusion, memory loss, constipation, abdominal pain, kidney stones, etc. etc. The condition of hypercalcemia is discovered by a simple blood test.

Has anyone encountered hypercalcemia due to cancer before? 

Esther

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blairashley's picture
Replies 5
Last reply 3/12/2012 - 5:23pm

2.4mm on abdomen > Had wide-excision (clear margins!) and SLNB on Friday 2/24.  SLNB results are still not finalized.  Doc went over the following report with me on Tuesday... said the results weren't clear enough to make a diagnoses and they're running more tests. But -- I thought I'd put it out there and see if any of you had some insight?  Thanks! 

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.

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azurliene's picture
Replies 10
Last reply 3/12/2012 - 4:05pm

My dad has stage 4 melanoma. Initial diagnosis was found when finding two tumors in his brain - 2 craniotomies, WBR and gamma knife have been his treatment methods so far. They cannot find his original source and as of now do not see any other signs of melanoma in his brain or the rest of his body. Next set of whole body scans scheduled for end of March.

His Dr. gave him the option of taking Temodar as a "preventative" measure. He could either do a strong dose x number of days straight and then take a break or take a lighter dose daily for 30 days. Radiation was really rough on him and he's just now starting to feel better again (although still has trouble with eating due to the taste of food) Although we'd rather he not sit back and just wait for the cancer to show up again, he's hesitant about taking the Temador because he's worried about the side effects and how they will make him feel. For those of you taking/who have taken Temodar, what have your side effects consisted of and how bad? Also, what type of a dosing schedule were you on? Daily for a month straight or larger dose x number of days straight then break?

 Thank you for any feedback - I'd really like him to "try" the Temodar but he's really worried about the potential side effects.

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Kimberly Duncan Watts's picture
Replies 5
Last reply 3/12/2012 - 3:54pm

Much to our dismay, while the YERVOY seems to have worked well on my subcues and abdominal lesions, it didn't quite get to the bowel. In a matter of 2 months following completion, I had emergency surgery Friday at 1 am to remove 20" of intestine. The good news is I'm alive. Had I waited, I wouldn't be posting this right now. And...obviously, it's GONE? Has this happened to anyone? Where the intestine turned inside itself so that the mets couldn't be seen by scan? They were having a hard time getting dye thru my veins.... Thanks for input. I am, quite frankly, sufficiently frightened.

I can do all things through Christ who strengthens me.

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Kelly7's picture
Replies 4
Last reply 3/12/2012 - 3:46pm

I have a question about the whole IL2 process. Is the best case scenario is that the tumors shrink, or is there a possibility of them disappearing? And if there is  positive results after the 1 week on, 1 week off, 1 week on, what is the next step? Another week on, week off, week on? What is the spacing between treatments? How many do you do? 

The week between treatments, should all the weight come off? Should the patient feel back to "normal" the first day they go back to the hospital for the 2nd phase? Does the first amount of bags allowed correlate to the second amount allowed?

Those of you that did this treatment, do you feel eating a banana a day helped? What about walking each day?

IS there anything my brother should be doing this week besides resting?

 

Thank you for any information you can give me!!

 

 

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The rising number of malignant melanoma cases the past four years at Karmanos Cancer Institute in Detroit illustrates the need for cutting-edge research into some of the most aggressive forms of the still mostly untreatable skin cancer.

But that will change starting this summer as Patricia LoRusso, D.O., director of phase-one clinical trials and the institute's Eisenberg Center for Experimental Therapeutics, begins a three-year, $6 million research project as co-leader of a group of 50 cancer researchers at 12 medical centers who will study BRAF Wild-Type metastatic melanoma. 

BRAF Wild-Type is an aggressive form of metastatic melanoma that has fewer treatment options. 

More than 70,000 new cases of melanoma are diagnosed each year, mostly in older adults, with more than 8,000 deaths annually. Some 50 percent of metastatic melanoma cases are BRAF Wild-Type. 

Most metastatic melanoma patients, including those with BRAF, have a median survival rate of six to nine months with a five-year survival rate of less than 20 percent, according to Karmanos. Melanoma accounts for 73 percent of all skin cancer deaths. 

"We know that there is a desperate need for treatment for those suffering from the most aggressive forms of the disease ... for which there are very few effective treatment options," said LoRusso, who also is professor of oncology at Wayne State University's School of Medicine in Detroit. 

While only 150 patients will be studied nationwide at the 12 medical centers, including Karmanos, LoRusso said several other clinical studies on melanoma are in the works at Karmanos. 

"Melanoma has always been a tumor type of importance in our clinical program," LoRusso said. "Our melanoma service at Karmanos, led by Dr. Lawrence Flaherty, has been involved in the development of many drugs that are being investigated or have been recently approved for treatment." 

With few treatment options, Karmanos researchers and clinicians focus on recruiting patients to clinical trials to test new agents, LoRusso said. 

At Karmanos, new malignant melanoma cases have increased 12.6 percent annually to 415 in 2011 from 365 reported in 2008. Over those four years, Karmanos has treated 1,546 malignant melanoma patients, including those with BRAF Wild-Type melanomas. 

But LoRusso said the new study -- which seeks to treat patients individually based on their genetic makeups -- is expected to help develop a better understanding of an aggressive form of the disease. 

"We feel that the novel trial design, which incorporates new as well as approved drugs, is not only a paradigm shift in how we treat this disease, but will hopefully improve overall outcomes for our patients," LoRusso said. 

For example, medical researchers will conduct personalized medical trials and genomic profiling on patients with BRAF Wild-Type melanoma, she said. 

"Our goal is to match the right treatment to the right patient, based on their genetic makeup." 

Based on each subject's genetic profile, the trial will evaluate the benefits of personalized therapy. 

 

 

 

 

 

 

"(Does it) improve outcomes over the way we currently treat patients?" LoRusso said. "If successful, this personalized approach may not only benefit BRAF Wild-Type metastatic melanoma patients, but could also serve as a model for other types of cancers." 

LoRusso said the 50 researchers, who include co-leader Jeffrey Trent, Ph.D., come from backgrounds that include clinical medicine, genomic research, computer science and drug development. 

Trent is president and research director at Grand Rapids-based Van Andel Research Institute and theTranslational Genomics Research Institute in Phoenix.

"Therapy options for people who have this advanced disease are abysmal," Trent said. "The likelihood of rapid discovery in the traditional path of drug development is very unsatisfying, especially when you have a group of people who have limited hope." 

By taking care of patients in the project with individual treatments, Trent said, research time can be reduced dramatically. 

In Michigan, research members also include principals Brian Nickoloff, M.D., Michigan State University's College of Human Medicine, and Craig Webb, Ph.D., at Van Andel. 

The melanoma project is funded by Stand Up to Cancer, the American Association for Cancer Research and the Melanoma Research Alliance

For more information on upcoming clinical trials, send inquiries to MelanomaDreamTeam@karmanos.org.

 

If anyone is in Detroit area...i recommend Dr LaRusso and Karmanos and i recommend them way over Univ of Mich(blah-i had BAD experience there)....It is a good second tier hospital...first tier being of course, sloan kettering, nih, moffitt, anderson...in fact, i am thinking of moving back  to Dtown and going to Karmanos...

boots

don't back up, don't back down

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WendyPam's picture
Replies 4
Last reply 3/11/2012 - 6:47pm

My Mom is on Yervoy reinduction and started having issues with diarrhea after her second infusion. It did get scary one of the days -  8x with blood and vomit. Dr. put her on the Prednisone and what a difference I see in her. She had become extremely depressed, her blood sugar level have been extremely high (over 300) and she can sleep all day. She is not herself at all!!!! We saw the Dr this past Tuesday and we told her that my Mom still had diarrhea 2x every morning, no blood and never past 10 am. (this dr is a sub for our dr that is out of town)  She said that was fine as long as no blood and no more then 2x. She is scheduled for infusion #3 this Tuesday.

Today my Mom didn't want to take the Prednisone and finally I told her we just can't stop without talkingwith the doctor. She has only been on it a week at 60mg every morning. I went and spoke to the local pharmacist in town to figure out if we could just stop or had to taper. He sent me home with papers to read. After google searching it looks like she hasn't been on it long enough that she would have to taper. We went down to 40 mg (2 pills) and tomorrow taking just 1- 20mg. (Our doctor is still away and the second doctor is away now - don't feel like dealing with an unkown doc that doesn't know us)

She hates the quality of life that she is dealing with right now and I have to respect her, but at the same time I have to fight for her. She told me that she doesn't want the 3 and 4th infusion if this is quality of life. This prednisone is driving her mental state down.

QUESTION::  Can we get her on Endtocort and treat the inflammation in the gut and not the Predisone that is treating the whole body and driving her blood sugar so high. She is on diabetic medication (one pill a day) Her diabetes is usually controlled by diet and prior to this she hadn't been on the medication in awhile.  Beside the fact that is makes her nauseous. 3 years of fighting this Melanoma and I have never seen her depressed like this! I would like to see her complete infusion 3 and 4. and start looking into anti-pd1 at Moffitt. What are your thought on Endtocort?

As always thank you so much for sharing your vast knowledge. It helps ease my worries..............

 

Wendy

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Replies by: rlaraia, Becky

My daughter was diagnosed stage IIIb at the age of 4. She is 6 now and has had a WLE to remove the melanoma as well as a lymphadenectomy. In October 2011 she completed 1 year of interferon and remains NED at this time. We have been trying to research information since her diagnosis in July 2010 and have not been able to find much of anything. Most of the information about melanoma as it applies to children under the age of 10 has come from only two paraent that we have met along the way who also have children who were diagnosed at a very young age. Her Drs. are as informative as they can be but even the info they provide mainly based on adults. I would like to find other parents who are willing to share their stories and any information resources they have found. We are very greatful for the knowlege we have aquired but feel like there must be more out there. It is simply difficult to grasp that there is no why or how this happens

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ElaineLinn's picture
Replies 8
Last reply 3/9/2012 - 2:17pm

just wanted to give you all an update. Today is March 6, I have been in the hospital since friday having siezures. They found a 1 1/2 cm tumor on my brain that has to be removed on Wensday.  I am scared to death but I also know it is all in Gods hands.

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jmmm's picture
Replies 5
Last reply 3/8/2012 - 10:19pm

This is a strange question, but my husband has been stage 4 since last January. We have 3 young boys and I obviously worry about them getting melanoma. They all have moles and get more each year. I asked the pediatrician about it and he said not to worry and just use sunscreen. My husband's tumors are all internal, so I'm not 100% sure I would recognize melanoma on the skin. Are there any other young moms or dads dealing with this? When do other pediatricians recommend seeing a dermatologist? I would just take them, but with a $40 per child copay and a mountain of medical bills for my husband, I have a hard time justifying it if the doctor thinks it's a waste.

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bruski1959's picture
Replies 12
Last reply 3/8/2012 - 10:03pm

Jackie had her 2nd Yervoy infusion today. This time we were able to arrange to have the Yervoy shipped in earlier, and had confirmation that it was in yesterday. So pretty much the same routine as last time, xray of the port, pre-medications for anti-nausea and allergic reactions, and then the Yervoy. The anti-allergic reaction medication makes Jackie sleepy, and she snoozed at the cancer center, and when she came home. So far the only noticeable side effect has been more fatigue than she typically has. Praying that the Yervoy will shrink the melanoma tumors, and that she won't have any of the nasty side effects. Thanks for your thoughts and prayers!

Bruce and Jackie

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natasha's picture
Replies 4
Last reply 3/8/2012 - 8:49pm

Hello everyone!!

    Finally I had my wider excision yesterday ! All was o'k during OP.

  Today and during night I feel pain , painkillers does not work , breast is swollen.

 Did you have the same expierence after surgery ? Is it ok?

 Thank you for all your support.

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