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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JenC's picture
Replies 1
Last reply 11/29/2011 - 2:18pm
Replies by: washoegal

I check this board regularly... but I thought it was just infomational/ research so that I could keep on top of the treatment of this disease so I can help with the fight and keep in the loop for my two young kids.  I lost my husband to melanoma almost 5 months ago.  I was on here daily, fighting to find some info that would save him.  I got a lot of great info.  I just got results of my own biopsy - it is melanoma in situ.  All I can think of are my kids - how can I prevent them from going through all tlhe suffering that their daddy went through with such a strong family history. 

I am on the hunt again for any information.  In the meantime - just a WLE and watch and wait....... but  how can I watch and wait when I know what this "oh its nothing" can turn into a big something.  Is there anything else that I can do instead of just a WLE and wait?!?!?!  What choices do I have?  My husband had the same choice at stage 3.  I'm just beginning again, but is the current state of things the same as 2 years ago?  Unless I  let this spread I have no other option but wait?  I will go back to my clinical trial research, but it obviously didn't help my husband much.  What can I do differently?

JenC

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Drew N's picture
Replies 2
Last reply 11/29/2011 - 8:53am
Replies by: Gene_S, akls

Diagnosed IIIB in December 2008. Just wanted to post and say no recurrences, and my latest CT was negative as well. What with all the promising new protocols, I may start buying extended warranties again.

Much love to all,

Drew

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taron's picture
Replies 7
Last reply 11/29/2011 - 7:04am

Dear All,

I wanted to ask if anyone is aware of a succesful rechallange to a BRAF inihibitor.

There is one case in Europe in Belgium which is summarised here (see post from Quentin) but basically Quentin went from Braf inihibitors to ipi and back to inihibitors.  I am a stage 4 currently on Vemurafenib and obviously very interested in the whole resistance issue.

Given how new these drugs are there may not be that many people that have had a chance to try all these treatments so I decided to ask patients group if there are any other cases.  Sure the docs will write about these cases, but will they do that in time for me and my family?

So I would like to ask you to reply to this thread if you are aware of any such case where someone who had previously progressed on a BRAF or BRAF and MEK combo then managed, somehow to respond again.  

Thank you

Taron

 

Per aspera ad astra (I have to believe it!

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Karolina's picture
Replies 14
Last reply 11/29/2011 - 2:55am
Replies by: Karolina, DonW, MichaelFL, Anonymous, W.

hi

i was wondering if it is possible to have a melanoma lump as big as 70mm if as so far I was reading about Breslow's scacle up to 10mm really? Please advise as I am confused...

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LynnLuc's picture
Replies 5
Last reply 11/28/2011 - 11:40pm
Replies by: LynnLuc, chet, MariaH

Trial Information

Study of MK-3475 in Participants With Progressively Locally Advanced or Metastatic Carcinomas & Melanoma (P07990/MK-3475-001 AM2)

Official Title: Phase I Study of Single Agent MK-3475 in Patients With Progressively Locally Advanced or Metastatic Carcinomas & Melanoma

Summary

In Part A of this study, the dose of intravenous (IV) MK-3475 will be escalated to find the maximum tolerated dose (MTD) for participants with a histologically or cytologically confirmed diagnosis of any type of carcinoma or melanoma (MEL). Part B of the study will explore the efficacy of the drug at the MTD in participants with advanced or metastatic MEL.

Phase: Phase 1

Locations (1)

Country
State
City
Zip
Facility and Contact

United States
Texas
San Antonio
78229
Investigational Site 1

Overall Contacts

SP Clinical Trial Registry Call Center
1-888-772-8734

NCT ID:NCT01295827

Date Last Changed: October 21, 2011

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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Theresa123's picture
Replies 2
Last reply 11/28/2011 - 6:04pm
Replies by: Theresa123, mombase

My Dr. wants me to have abdominal and subcutaneous surgeries to remove melanomas.  I just had my 2nd Yervoy, and I wonder if this is a good idea.  I am getting a second opinion at Angeles Clinic.  I just wonder if anyone else has had this issue.

I have Stage IV for about 2 years, and this is my 4th treatment(s).  Interferon, Ipi, Bio, and Til

Every day is a miracle.

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emilypen's picture
Replies 2
Last reply 11/28/2011 - 2:34pm
Replies by: Lisa13, Becky

Hi All,

Just wanted to give you a quick update on my husband. We had scans last week, week 20 for Ipi response and week 8 for carbo/taxol response.

We finallly got some good news. No new mets and shrinkage in a good percentage of them. So whether its the chemo or the IPI something is keeping the disease in check. Woohoo!

The chemo drugs are really tough on his system and he had to have 4 bags of blood and a bag of platelets to get his counts up. They were seriously low...

Plus his radiation oncologist has started him on some radiation for his sacrum and spine, just to help resuce the tumour size there.

No new brain mets either!

 

So we just keep on keepin on.... he's super fatigued and not really hungry but as our babies due date keeps getting closer we were estatic to hear that there was no new cancer.

Hope everyone is doing well. Cannot believe it's almost Christmas.

 

Em

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laurieformike's picture
Replies 2
Last reply 11/28/2011 - 2:20pm

My husband, Mike's been on the Zelboraf since Oct. 3, had to stop taking do to severe rash and throat swelling. Waited 10 days because he could not get in to see Oncology doctor. But then restarted at lower dose of 3 pills twice a day. He still has side effects joint pain and tiredness and fatigue. Spoke with the Zelboraf Access Solutions Patient Support Nurse, she said he could go down to 2 pills twice a day. Just wondering if anyone out there has had to change dose? E-mailed the doctor to see if that was okay with him.

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Hello everyone! We are very pleased to be introducing our new Phone Buddy Program to the patient community, and I wanted to make sure that everyone on MPIP knew about it. This program is designed to match newly diagnosed individuals with trained volunteer who are, themselves, melanoma survivors. These volunteers will provide support and guidance to their "buddy" as they begin to navigate the melanoma landscape. Depending on the needs of the patient, these volunteer relationships can last anywhere from one phone call, to  weekly calls for a year.

I would be happy to discuss this program with anyone who might be interested in participating. We have trained volunteers ready to be matched up with buddies. You can read more here: http://www.melanoma.org/learn-more/patient-reference-guide/mrf%20phone%20buddy%20program

Please let me know if you are newly diagnosed and think a Phone Buddy would be helpful to you, and please share this information with your networks.

Take good care,

Mary Mendoza

National Director of Volunteer Services

(202) 347-9675      l    volunteer@melanoma.org

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bradcope1's picture
Replies 5
Last reply 11/28/2011 - 12:44pm
Replies by: bradcope1, LynnLuc, Becky

My daughter just got word today that she missed out on the ipi arm of the trial. The good news was that the all the scans and tests were clear, the bad news was that they want her to start interferon Monday morning. That's not going to happen. Only 10 days left to find a trial. The process stinks.

Watching and waiting.

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windy's picture
Replies 4
Last reply 11/28/2011 - 10:27am

Happy belated Thanksgiving to everyone. I am requesting information from anyone that has had painful feet and swollen hands while on Zelboraf. I have been taking it for about 5 weeks now. The rash has taken over my face, head, arms and chest. I've broke out in several places with warts. I must admit that these are bothersome - but they are better than the side affects from biochemical treatments. Any tips would be welcome. God bless you all. Thanks.

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Kosta's picture
Replies 10
Last reply 11/28/2011 - 8:15am

There is so much I want to say but first a big THANK YOU! Thank you for being the Husband, Father, Grandfather and Friend.

You personified life’s true meaning. “LOVE”. You loved everybody including those that did you harm. Your kindness and your smile touched everybody around you, even those that didn’t understand a word of Greek understood the language your eyes ...and smile spoke. My sorrow is great but I will keep your memory intact with goodness and kindness.

Even in your darkest moments you guided us with your peace. You fought very hard and didn’t give up for us. My Dad, my Hero, my Guiding Light. The person I will always be proud to call “MY DAD” I LOVE YOU and will greatly miss you. 

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Lisa13's picture
Replies 6
Last reply 11/28/2011 - 7:07am

As some of you may remember, my 12 week scan after ipi showed 50% regression and some had disappeared. 2 of them had grown a small amount, but we don't know if this is inflammation. On Wednesday, I have my 16 week scan and results and now I'm really nervous. I truly hope that the lung mets keep shrinking and the 2 that grew a tad are now starting to shrink.

That being said, does anybody know if a scan looks successful after 12 weeks, can it all of a sudden change to something bad?  I just can't imagine going from good to bad, but I know these things could happen.  Now I know there is some concern over the 2 that grew, but I could have them removed.  If 2 of them grew and the rest continued to shrink, can you reintroduce ipi because of a "mixed result" scenerio? 

Thanks,

Lisa

Many impossible things have been accomplished for those who refuse to quit

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KellieSue's picture
Replies 8
Last reply 11/28/2011 - 5:42am

Well, after a few weeks with what I thought was strep turned out to be a pretty big tumor. I passed out at work and was taken to the ER. They found that I had one tumor in my brain. I pretty much lost feeling in my right arm and leg. I'm out of the hospital now and am doing localized radiation as a outpatient. I'd like to know why my doctor chose to treat it with radiation instead of gamma knife or SRS. I haven't received a full explanation of my treatment yet. I'm not against it, I'm just confused right now.

Kellie (from Iowa) stage IV

Cancer Sucks. I'm so not done kicking cancers ass! I have a lot of life left to live

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Julie678's picture
Replies 13
Last reply 11/27/2011 - 10:23pm

Hi, I have noticed a few references to bio-chemo for Stage IIIC in particular.  Could be just one person here but the oncs we have talked with say that treatment was used more in the early 2000's and is now not really recommended.  One big reason is toxicity. 

I would be interested to hear what others think about bio-chemo.

Thanks!

Julie

husband stage IIIC

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