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 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/

Login or register to post replies.

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

Login or register to post replies.

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.

Login or register to post replies.

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.

Login or register to post replies.

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.

Login or register to post replies.

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!!

 

 

Login or register to post replies.

 

 

 

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

Login or register to post replies.

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

Login or register to post replies.

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

Login or register to post replies.

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.

Login or register to post replies.

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.

Login or register to post replies.

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

Login or register to post replies.

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.

Login or register to post replies.

Tim--MRF's picture
Replies 2
Last reply 3/8/2012 - 6:08pm

Last night's report on ipi and radiation set of a lot of activity, as seen from several threads below.  One person from the MPIP community had some specific questions and I was able to get some answers.  I thought this might be of interest to others here:

 

 

1.       How far out was the patient from the last dose of the ipi regimen?  (And was she on the standard approved protocol or some other dose/frequency program?)  The patient was on a trial in which maintenance ipi was given every 12 weeks at 10 mg/kg. She was between 2 such maintenance doses when the radiation was done.

2.       What was the size of the tumor that was irradiated?About 5 cm.

3.       Any reason to think that radiation of several smaller tumors might have a similar effect? It certainly could.

I think it is important to remember that this is the story of one patient.  No-one knows yet if what happened with her is indicative of what will happen to a braoder group.  Having said that, the principle behind the report is consistent with other immunologic approaches.  A handful of companies are working on vaccines that involve tumor specific antigens, based on the same concept that these tumor proteins can stimulate an immune response against the tumor as a whole.  Some of those companies are already discussing doing trials combining their vaccine with ipi.

I get frustrated with media expanding a small positive result into a world changing event.  It may be such an event, but it may not be.  In the meantime I am quite sure that doctors across the country are being approached by ipi patients asking for radiation....  

Hopefully this is a true turning point.  Dr. Wolchok does good work, and Sloan Kettering has an excellent program, so it comes from a reputable source.

Tim--MRF

 

Login or register to post replies.

Cspan's picture
Replies 13
Last reply 3/8/2012 - 1:31pm

On February 4, 2012 my husband passes away from melanoma. Although I never posted much I did read you posts every single day. The support I received from all of you was a life line. Howard was diagnosed with a scalp melanoma in February 2011
He has a radical neck dissection and high dose radiation over the summer. On Labor Day weekend we walked 5 miles. He came home and coughed up blood. He had 4 rounds of advanced biochemo during the fall and one dose of high dose IL 2.
On February 4 th I came home to him talking jibberise. It spread to his brain, he had a massive stroke and died 4 days later. He has a peaceful passing surrounded by our 2 sons and myself. I held his hand and told him it was Ok to go, he took one last breath and died.
He had worked up until 4 days before he died. Howard was a young energetic 62 years old.
The grief is very hard, we had a very good marriage of 32 years
Thank you all for sharing all the ups and downs...you are all an inspiration
Claire

Login or register to post replies.

Pages