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 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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yazziemac's picture
Replies 3
Last reply 3/9/2015 - 10:29am

Hi

My husband, Pete, was originally diagnosed with Stage 3 in July 2013 and has had rapid progression since then:  January 2014, November 2014, February 2015.  He now has multiple mets in liver, muscle and bone and starts Ipi next week.  Is there evidence to suggest that he has a poorer prognosis because of the rapid rate of progression of his disease, as opposed to someone who has years between new mets?

 

Thanks for any information on this.

 

Yasmin

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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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sstech's picture
Replies 4
Last reply 3/9/2015 - 7:27am
Replies by: sstech, Mat, Bubbles

I have been on Opdivo treatment for 2 weeks and am continuing Tafinlar capsules twice a day for 2 more weeks. I know that the Opdivo is very new. I am only the second patient at M D Anderson Melanoma Clinic to be on this treatment. Just curious if there is anyone else on the Opdivo on this site that I can compare notes with. I was diagnosed 5/5/2012 and have been fighting like hell every since. I feel so blessed that the Opdivo was fast tracked through the FDA and is available right when I need it.

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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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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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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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arthurjedi007's picture
Replies 4
Last reply 3/6/2015 - 10:39am

Thanks to the folks on here I was able to find even locally an upright MRI.

My next big scan after next week is a pet and I can't find that they have created an upright for pet. Does anyone know if there is one? 

Artie

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Julie in SoCal's picture
Replies 4
Last reply 3/6/2015 - 8:38am
Replies by: _Paul_, Julie in SoCal, Anonymous, Mat

Hi there friends!

Thanks so much for your good wishes!  My scans yesterday showed that I only have the one met in my arm. So I'm still feet in stage 3c and toes in Stage 4- metaphorically, of course ;-)  This is such good news!

So, the plan is to start pembro next Wed.  I'll have scans after the 4th round and evaluate things from there, but I will probably be on it for at least 6 months, possibly longer!

Something Rock Star Doc said yesterday that caught my attention was that it was rare for someone to have such a good and complete response to IPI as I had to recur.  I thought this was interesting in that it helped with my disappointment. #$%^&* you melanoma.  But I'm not sure I like falling into a rare category.  But then as it is with statistics like this, it might not mean anything - someone has to reach durable response, it might as well be me!!

Thanks again all!

Julie

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

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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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_Paul_'s picture
Replies 8
Last reply 3/4/2015 - 11:43pm

So I just got a call from Dr. Lee here in Seattle who is the principal investigator for the TIL clinical trial at the SCCA. She informed me that not only were they able to successfully harvest my TIL cells (they have been incubating in a dark lab somewhere for the last 5 weeks in what I like to refer as "melanoma stew"), but that they show very good tumor infiltration. They are now frozen and available for when I need them.

I had my second infusion of Keytruda last week and it’s too early to know if it’s working, but if it’s not, or stops working sometime in the future, I have a new Plan B waiting!

- Paul.

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Anonymous's picture
Anonymous
Replies 0

Been thinking about you today.I hope that you get good scan results.Shalom

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dmk252003's picture
Replies 2
Last reply 3/4/2015 - 2:03pm

Has anyone had IV Hydration while doing yervoy treatment?

I just received an email from my moms oncologist stating that she ordered hydration IV with her yervoy treatment due to abnormal creatinine test result.

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porrige's picture
Replies 4
Last reply 3/4/2015 - 11:53am

Hello Guys,

My sister is just after finishing her two weeks of whole brain radiation and recovering at home, I am so worried about her as her husband has told me that she is completely exhausted has terrible headaches and no mind to talk to anyone and she is  so fatigued. The poor man is so worried about her, and we her family are so helpless to do anything as she lives in Australia and we live in Europe. Its heart breaking for us as we are so powerless to help them right now, and all we can do is send messages, hope and pray. If anyone here has had radiation for Mets to the Brain, can you tell me if these symptoms are from the radiation and if they are will she be like this for long, she is hoping to start a new drug treatment as soon as she settles. She has been through so much recently, with the seizures and exhaustion and missing everyone, I would love to be able to just find out some more so that I can share with her amazing husband who is solely nursing her at the moment.Thanking you all.

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