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

Please join us for a free teleconference on April 12, 2012 from 8-9pm EST.  The topic is "When Mom or Dad has Melanoma" and will be hosted by Dr. Fran Lewis from the University of Washington.  Don't forget to register!

http://www.melanoma.org/get-involved/when-mom-or-dad-has-melanoma-educational-teleconference 

Login or register to post replies.

kjshaner444's picture
Replies 8
Last reply 5/31/2012 - 11:04am

Hello-

Question #1: I am really close to the end of my 12-months of Tx (Interferon, i.e. Intron-A, subcutaneous injections, 3 times/week). So, what nexxt? 

Question #2: Any feedback on photography as an adjunct to visual inspection for surveillance for malignant melanoma would be helpful (I appologize if the subject has been discussed in prior posts here).

Thank you all, so much.

P.S. Thank you Carol Taylor. Your kind response/prayer to my prior post has helped me so much these past 12 months. 

Karen

Login or register to post replies.

bikerwife's picture
Replies 1
Last reply 3/12/2012 - 10:19pm
Replies by: jim Breitfeller

I had gamma knife surgiery on Feb 20. I've had 3 doses of ipi and noticed after second treatment I have new tumors. Dr said they see it a lot during ippi. But it is so scary seing these things grow on my husband. Dr said it sometimes gets worse before better. I love him so much. Help me someone.

What God leads u to he will. Lead you through

Login or register to post replies.

aldakota22's picture
Replies 7
Last reply 3/13/2012 - 12:26pm

Today I just completed my sixth month on Zelboraf.Drug for me is working as hoped.Have not had a scan of any kind since late last July 2011.Will see doc on the 3/21 and schedule one soon after.Side effects on drug are do able.Hoping to stay on this treatment for a lifetime as progress is being made on managing melanoma as a chronic disease.,Praying for myself and all other fighters out there. Thanks for keeping me in your thoughts....Al

Login or register to post replies.

Charlie S's picture
Replies 18
Last reply 3/14/2012 - 11:20pm

After being in either the hospital or physical rehab since last halloween, Jerry is finally back at home with his family-------------under the care of hospice.

Spoke with him on Saturday and he is in good spirits, comfortable, lucid and was looking forward to going for out for a ride.   His tumor burden in and around his spine/spinal cord are inoperable and after a good, long 2+ year run on ipi, he is just out of options.

For those of you that don't know, Jerry was a pioneer when he started on ipi brain met trials in boston.  He has contributed a lot of knowledge through his trials and tribulations and he truly does hope, believe and wish that what science has learned by his trial participation will indeed help others in the futue.

He is a great guy with a great wife and two daughters. Please keep him in your thoughts.

I'll ask if it's okay to post his mailiing adress for those that would be inclined to send a card.

Charlie S

Login or register to post replies.

Warrens Daughter's picture
Replies 26
Last reply 3/29/2012 - 12:50am

Hello to all of dad's fellow gladiator's...I wanted to extend the very sad news of my dad's passing to those who he has befriended over the years...

Firstly, I would like to say my father passed away melanoma free - so please do not be discouraged by this news.  Dad was diagnosed with Merkel Cell Carcinoma (an extremely rare different form of skin cancer) last year and passed away February 16, 2012 - nine months later just shy of his 60th birthday.  Also know that you were his inspiration - others who fought the battle along side him - so my family thanks you and you will remain in our prayers. 

I wanted to share something that I wrote for my dad's service...

We have so much to celebrate today and be thankful for.  There was that moment when my wedding had started and it was just dad and I waiting in the bridal suite to walk down the aisle – honestly I don’t know who was more nervous.  When we got to the door of the church as they opened it he started making small talk, either to stop from crying or to stop from passing out.  After my first dance with my husband, and it was my dad’s turn he proclaimed to everyone that there would be no crazy spinning – but then he had everyone laughing as he successfully completed a spin or two of his own.  At the end of our wedding he drove with us over to the port were we were taking off for our honeymoon in the back of the car laughing and talking about how great the weeding was.  None of this would have been possible had he not won his major melanoma battle five years earlier.  God answered so many prayers for us.  Even in his final hours God was answering prayers – getting my mother and me out to him so the three of us could be there with him – holding his hand, surrounding him with love. 

He was an avid fighter for cancer patients.  When his battle first began with melanoma ten years ago, he signed into a melanoma community on-line bulletin board where he met many people over the years.  After his major battle with Stage 4 melanoma 5 years ago he was inspired by others fighting to write the story of his battle and exactly how he got to the point of “cured” or “NED” cancer lingo for No Evidence of Disease. 

He loved life so much…he loved his family so much and that’s what he fought for until the very end. 

 My father’s story ended with these words…

 "In closing I would like to quote the very courageous Jimmy Valvano from his speech during the 1993 ESPN ESPY Awards. He was pleading to his audience to give money for cancer research saying, “it may not save my life, but it may save your children’s life”. Stricken with tumors everywhere he struggled to stand before a huge crowd and the national television audience. As he focused in on the camera he said......

“Don’t ever give up. Don’t ever give up.” “Cancer can take away all my physical abilities. It can not take away my mind, it can not take away my heart, and it can not take away my soul”.

Anything is still possible in my future. I have a good prospective on reality. One thing is for sure. I will never give up. I hope you never do either."

 If we could all take away a part of my father to hold on to it forever, take this – don’t ever give up – when struggles come, keep fighting because the greatest things in life are worth the battle.  Family is the most important thing.  Take the time to be with your family – make the memories that will carry you through hard times.  And love life – find God’s blessings in the little things and be forever grateful for those moments. 

I am so thankful for the time I had with my dad - I will carry him with me forever - and until I see him again in heaven I know he's enjoying his permanent state of NED.

"don't ever give up" "don't ever give up" ( the Jimmy V Fund for cancer research) - my dad's motto

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.

boot2aboot's picture
Replies 1
Last reply 3/13/2012 - 6:40am
Replies by: MeNDave

 

 

 

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.

Anonymous's picture
Anonymous
Replies 6
Last reply 3/14/2012 - 9:10am
Replies by: Anonymous, Janner, dian in spokane, SoCalDave, aldakota22

I was diagnosed with melanoma in situ 5 years ago which was removed with a wide excision successfully.  I was just looking at my scar and noticed a darkened area on scar line, it is subtle, but appears to be a purple/red spot right in area of the melanoma mole.  What does a local recurrence look like?  Should I be looking for more of a mole or could a purple spot also be something to concern myself with?  Do scars evolve this many  years out? 

Login or register to post replies.

markd's picture
Replies 13
Last reply 6/19/2012 - 1:14pm
bruski1959's picture
Replies 6
Last reply 3/12/2012 - 9:19pm

Jackie had her 1st two Yervoy dosages on 3 week schedule, but started having intestinal side effects 10 days ago. For the first few days Immodium and clear liquids/bland diet seemed to be tolerable. Then nausea kicked in, and Jackie started dehydrating rapidly. A trip to the ER was necessary to rehdryate Jackie with IV fludis and anti-nausea meds via her port. Also, her potassium level was low, so she had some IV potassium. Got her stabilized and back home 5 hours later. Then she was put on high dose steroids to combat the now more frequent intestinal side effects. Jackie has had trouble resting and has had some confusion too. She was advised to take Benadryl in addition to strong sleep aid to help her rest. The Yervoy intestinal side effects subsided, but the side effects of the steroids have been troubling. Tomorrow at Jackie's oncology appointment we expect the steroids to start to be tapered off.

On another note, a friend of ours daughter has taken two Yervoy doses, and had to discontinue the Yervoy due to the side effects, and has remained on high dose steroids and bland diet. But the Yervoy has stimulated her immune system enough to shrink the melanoma tumors in her liver.

Not sure what the plan is yet, but for now Jackie's 3rd Yervoy dose originally scheduled for March 16th has been postponed. Will see what the oncologist recommends and what Jackie wants to do. She hasn't been herself at all these last 10 days, and I think it would be hard for her to make any decisions tomorrow. I think we will need to let her taper off the steroids a bit, get caught up on some rest, do her weekly blood tests, and take it from there.

We finally got the Explanation of Beneifts for the first Yervoy treatment. The charge was $36,000, the negotiated rate was a little over $22,000. Since Jackie has already met her deductible and 2012 annual maximum out of pocket, our cost was $0!

Appreciate any feedback anybody has on their experiences with Yervoy side effects, steroids side effects, stopping Yervoy treatment after 2 doses, and continuing on with 3rd Yervoy treatment.

These last 10 days have been challenging, to say the least.

Thanks,
Bruce and Jacie

Login or register to post replies.

audgator's picture
Replies 1
Last reply 3/13/2012 - 2:04am
Replies by: LynnLuc

This may be a little far out, but has anyone on an anti-pd1 trial ever had a shot of cortisone for an unrelated orthopedic condition?

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.

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)?

Login or register to post replies.

Pages