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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Teochasse's picture
Replies 3
Last reply 3/10/2015 - 11:11am
Replies by: SABKLYN, Teochasse, Janner

I would appreciate any feedback on top notch cancer medical centers  in the state of Nevada.Do you have to travel out of state for your medical care and where, LA?I am very happy with my medical care here  in New England but we are done with enduring  its brutal winters so we are looking to relocate to Las Vegas  starting next winter. I am willing to travel once a year for my routine check ups with my current gynecological oncologist here in Portland Maine as she is a top notch specialist  whom I credit with  basically saving my life.Any input  on Nevada's medical facilities would be welcome.

Teodora Chasse

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Jen P's picture
Replies 1
Last reply 3/9/2015 - 2:42pm
Replies by: nlavine925

Is anyone here a patient of Dr. Jeffrey Infante in Nashville?  Wanted to know what you think about him and his bedside manner?  Thanks!

 

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Julie in SoCal's picture
Replies 2
Last reply 3/9/2015 - 5:29pm

Hi Friends,

I've just come across this YouTube video explaining how PD1 works.  It's easy to understand, there's pictures and it's only 4 minutes long.  

http://youtu.be/aobxYfY-8p0

Blessings,

Julie

Stage 3c: WLE, SNB, LND, HD-INF, GM-CSF, IPI, PEMBRO.

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Mom2Addy's picture
Replies 6
Last reply 3/22/2015 - 4:25pm

My husband is due to get his second infusion tomorrow. Did others find that the side effects worsened or change as you progress through the regimen? We're you able to keep working? Thank you!

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Anonymous's picture
Anonymous
Replies 2
Last reply 3/9/2015 - 11:47am

has anyone experienced  a pain in the leg after first infusion? If so what can i do for it ,is keeping me awake at night?

hazel43green

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Banders's picture
Replies 5
Last reply 3/11/2015 - 10:39am

To put it bluntly my question is should adoptive cell therapy only be considered when all other options have been exhausted?   From my recent experience this seems to the dominant medical thinking.

A little background.

 I've been lurking on this message board since my diagnosis of stage 4 metastatic melanoma in October 2014 that followed 5-6 mothns of chest and back pain that included 4 boken ribs. The cancer is in every bone above my knees and I have 5-6 large tumors throughout my body, with especially large one's in my ribs and spine.  

Did the 4 treatment regiment of Yervoy and two 10 dose rounds of radiation from October to December.   Also took ten daily shots of leukine with last Yervoy treatment.   Immediatley my level of pain went down and things were pretty good until about a month ago.  

I've started having back and chest the last 4-5 weeks and there is blood in my spit.  Pet scan about a month ago showed all tumors stable except one lesion that is where the pain is.  

At some point I read about adotpive cell therapy on this website and have tried to read as much about as I can in medical journal articles using google scholar.  As I understand it there are good response rates and even complete recovery rates that vary from 10 to 40 percent.  

Last week I went to a melanoma specialist and his opinion matched my doctor at the regional cancer center I go to.  They say there are just as good results without having to spend weeks in the hospital.

The specialist wants me to go on the combo of dabrafenib and trametinib.  See how long that woks and then go on anti-PD 1 when the tumors start growing again.   

 

I guess I just want to be more aggresive than the doctors.  So back to my question.  Should I only consider adotpive cell once all else has failed--which I think is going to happen anyway.  

 

Sorry for the length and I greatly appreciate any comments or opinions.

 

 

 

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Anonymous's picture
Anonymous
Replies 1
Last reply 3/8/2015 - 4:43pm
Replies by: arthurjedi007

After 204 weeks on braf/mek. It is time to move on to the next step. Still only have the original met but with a small temporary one on the surface of the brain. After having that removed later this week I will be moving on to keytruda. Anyone have any thoughts?

I refuse to let this beat me. I WILL NOT LEAVE MY GIRLS! MELANOMA CAN BITE ME!

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Anonymous's picture
Anonymous
Replies 9
Last reply 3/11/2015 - 1:59pm
Replies by: arthurjedi007, Want2help, Anonymous, Patina

My friend aged about 62 was diagnosed withmetastatic malignant Melanoma in April 2014 . HPR showed malignant melanoma of left sole with invasion into reticular dermis,tumor thickness upto 3mm, no PNI deep margin 1 cm away and 7/10 pelvic lymphnode positive with extracapsular extension and 8/09 inguinal lymphode positive ECE.She underwent surgery on May 14.

 

The doctor opted for observation. Her scans were all clear till 25 Oct, 14. She complained of imbalance and right lower limb weakness. The MRI of brain showed multiple intraparenchymal lesion scattered in bilateral frontal,parietal,left occipital regions, largest measuring 2.5x2.3 cm in left frontoparietal region, She received palliative external beam radiotheraphy to whole brain to a dose of 30gy/10# from 27/10 to 6/11/14 PET CT on 17/1/15 showed mildly metabolically active lesion in left external iliac region and brain lesions with interval changes.  She has just completed her 6th chemotheraphy and now has weakness in right arm and right leg. She is facing a slight not very much) difficulty in understanding and responding. Looks like the brain mets are active again. She was doing good after her radiation and this happened suddenly.

We will see the doctor tomorrow. My question is how much raditaion can be given to a person? Her radiation got over on 6/11/14. What are the survival chances in case of brain mets? I love my friend and it dreads me what might happen next. I am just not able to function now

 

Can anyone please help.

God bless!

 

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Wilbur's_Mom's picture
Replies 5
Last reply 3/9/2015 - 5:55pm

My father has Stage 3C melanoma and is in a clinical trial receiving Yervoy.  He's had four treatments so far and has progressing intestinal symptoms most commonly diarrhea.  His oncologist is aware and says it is a normal side effect.  He takes Imodium.  Have any other Yervoy patients had success with any other OTC treatments or herbal/home remedies for diarrhea and stomach cramping?

 

Thank you,

Stephanie

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ldub's picture
Replies 5
Last reply 3/8/2015 - 9:02pm
Replies by: ldub, _Paul_, Janner

I am newly diagnosed and will be having skin exams every three months for the time being.  I am interested in opinions regarding your experiences and opinions regarding what constitutes an adequate/good/excellent skin examination by your dermatologist and whether I should seek out one who has additional training or expertise in melanoma skin cancer.  Thanks! 

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Hi, all, 

I'm seeking advice for my 34-year old husband who has stage IV melanoma. We have run through the treatment options but remain in a dire situation with runaway tumors in the liver. 

He had a lymph node dissection in July 2013, followed by brain surgery and radiation for a brain met in October 2013. He then tried yervoy but the melanoma continued to spread to the spleen and liver. He started the BRAF inhibitors in March 2014, which worked wonders. In April 2014, he started the anti-KIR and anti-PD1 trial at Memorial Sloan Kettering. He had dramatic shrinkage in all of the lesions and was in tip top shape over the summer. He transfered to Johns Hopkins as it was closer to home. In October, the tumor on the spleen started bleeding and he had to have splenectomy. Then a few weeks later, he was in incredible pain on the right side. The tumors on his liver also started bleeding. He had to go off the trial. 

December was a low point. The liver mets started growing again and he was hospitalized for the pain. His doctor put him back on the BRAF inhibitors plus pembrolizumab/Keytruda. His blood work improved week after week. Suddenly, his blood work is out of whack and the scans show that the liver tumors are still growing. His doctor stopped pembro as he didn't think his liver could handle it. He is keeping him on the BRAF inhibitors but it seems my husband is building resistance to them.  

We don't know what else to do at this point. We want to keep fighting but there don't seem to be any good options. We are beyond frustrated since the treatment was working so well until the tumors started bleeding.

Any advice or treatment suggestions would be grately appreciated. Thanks so much!

 

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Melanoma Prayer Group on Facebook just posted this

share about this FREE event, March 28th, in Tempe Arizona...attend in person OR online! Visit the page for full info! This looks REALLY good!

http://www.patientpower.info/event/melanoma-phoenix-2015

 

 

One of the most common and among the most dangerous cancers, melanoma has seen some tremendous leaps in research, particularly in immunotherapy, which continues to increase our understanding of how to treat melanoma at various stages of the disease. On Saturday, March 28th, in Tempe, Arizona, Patient Power and Banner MD Anderson Cancer Center will hold a free in-person melanoma town meeting for patients and caregivers at the Phoenix Marriott Tempe at the Buttes where you and your loved one can hear the latest melanoma news from leading melanoma experts. 

Hear about emerging therapies, understand current treatment options and learn about support resources. 

During this interactive town meeting, you will have the opportunity to meet and connect with experts, other patients, survivors, and caregivers touched by melanoma. Share your knowledge with your peers, learn and become inspired. 

Judy (loving wife of Gene Stage IV and now NED)

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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MindyD's picture
Replies 4
Last reply 3/9/2015 - 7:48am

Hi all,

I am only 7 weeks post-op from a WLE on my back, and SNB (neg).  2 days ago, I noticed a new spot about 2 inches from my fresh scar and had my daughter check it out.  She said it looked like a "popped pimple"...   so I thought nothing of it.   However, it seems to be evolving rather quickly...  Today she looked at it again, and it is bigger and now dark red with a darker brown spot on the side.  It feels exactly like the original primary... itches like crazy but stings and burns when I touch it.  I had her take a close up pic, and it even looks like a "mini me" version of the original. 

If the beast is back, would it be considered a local recurrence or an in transit met?  I find it hard to believe that a recurrence would happen this quickly, especially given the huge margins my surgeon took.  He initially said the incision would be 6 cm total, but it ended up being 6+INCHES.  Still not sure why.  

Has anyone heard of this kind of recurrence so quickly after a WLE?  I know I "shouldn't worry until we know for sure", but easier said than done, right?  The idea of doing this surgery/recovery again so soon is freaking me out!       

Appreciate any insight... 

Hope everyone is having a great week!!  :-)  

xxoo

- Mindy

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