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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Charlie S's picture
Replies 2
Last reply 10/22/2013 - 11:29pm

Stumbled on this research focus today.  It has to do with biomarkers, signaling pathways and the identification and measurement  of a particular protein that MAY early predict and identify those patients who will or will not respond to current BRAF treatment approaches.

Though not definitive by any means; I sure like the focus of the research.

http://www.foxnews.com/health/2013/10/22/newly-discovered-biomarker-can-...

Cheers,

Charlie S

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sharon0803's picture
Replies 9
Last reply 10/22/2013 - 6:45pm

Hi All,

 

My name is Sharon, I was diagnossed with stage 3a or  3b two years ago.  I opted out of the meds.  I have been doing my scans as directed..  I would like to ask of others - their experiences with findings from PET Scans... 

Jan 2013 - my PET Scan showed Abnormal hypermetabolic activity within the right hilum.  At that time, my doctor told me that based on the time of year this is not abnormal, perhaps a cold.  I figured maybe I had a cold and was not feeling it so strongly.

Sept 2013 - I had a pain near the lymph node dissection, to rule melanoma out, they did another PET.  Groin was clear, yet, it showed hypermetabolic adenopathy demonstrated.  It read "both lesions were present previously but activity is increased.  Overall size is stable.  Under IMPRESSION:  "increased activity within two lymph nodes.  Right hilum and mediastnum.  Metastatic disease likely.   

My docotor again, said, time of year is causing this.  I dont know if I buy it. The metastatic disease likely I find worrysome.   Has others had this experience?  Thanks for taking the time to read.

 

Sharon

 

 

 

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spdg4412's picture
Replies 5
Last reply 10/22/2013 - 12:16pm

New to the board but I thought I would post a my relative's success story to offer some hope to others going through melanoma.

My relative is a male aged 76 years in good health who had a small 'pimple' like mole removed from his face in October 2011. On biopsy, it was diagnosed as melanoma and measured at 2.5 mm in depth. He then had a large excision of the area and had clear margins. He also received a baseline PET scan with no metastases found.

In May of 2012 he had a follow-up PET scan and they found 2 small metastases in his lungs, so he was staged at stage 4. The mets were biopsied for cellular analysis and they did not have the BRAF mutation. After a couple of weeks he began infusions of Yervoy (ipilimumab). He received all 4 infusions about 3 weeks apart each and he had minimal side effects, very limited rash and a little itching, some mild stomach upset, felt cold quite often and also was irritable. Other than some anti-nasea medication, he had no treatment for these symptoms. His doctor was optimistic because these mets were caught relatively early and were still small although I don't know the exact size.

Last week, he had a another PET scan and it showed that the metastases were no longer detectable on the scan!!! Needless to say, he and his family are overjoyed and this result. He does not yet know about follow-up and any potential maintenance treatments. To all around, this has been an amazing development. I'll update when I get more information.

I hope this helps someone out there going through this terrible cancer.

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mark74okc's picture
Replies 12
Last reply 10/22/2013 - 11:16am
Replies by: charlesthomas, kylez, DonnaK, jmmm, Anonymous, JoshF, mark74okc

My father was Diagnosed with Brain Melanoma a little over 6 weeks ago.  He has gone down hill drasticly. before he was diagnosed he was walking a mile a day and reading complicated ancient greek books and philosophy.  He is 83 btw.  He had 1 treatment so far but he is really sliding fast. he has 4 large masses in his brain, 2 in the front 2 in the back and they have been growing even more and caused bleeding. It has affected his motor skills to where he has basically become wheel chair bound and has a hard time speaking.  It is almost like he knows what he wants to say but it wont spit out.  His memory has been affected and now it seems he  is having problems swallowing so he has been put on a puree diet.  Will Yervoy have really any affect with someone who is 83 years old?   our Oncologist says he is dying and does not see any point to using Yervoy.  I just do not know what to do really.  I dont know if we need to start working to an end of life care situation where we just make him as comfortable as possible, or keep working on it keep seeing him still deteriorate.  It is sad seeing him like this. I can see the sadness almost in his  eyes at times.  He is a mere shell of what he use to be. he has a  problem even answering or proscessing simple questions now.   I am just at a loss.   I do not knokw what to do.  We do not have the means to care for him at home because it  is just too much for  us and our house is not set up for this.  While he is on yervoy treatments from what I understand because it is outpatient he has to be at home and we can not even keep him at the nursing facility while he goes through treatment I dont think.  What options do I have?  how can we take care of him while we continue on the Yervoy assuming the Yervoy is even viable.  He needs basically 24 hour care at this point.    Just from my point of view I almost see the tumors being to far entrenched for any help at his age. My Mother and I are just feeling so confused and helpless. on one hand we want to keep treatment  if it will work, but on the other hand if he is so far off that the yervoy really wont do much, we do not want to extend his unfomfortableness any further, and just make him as comfortable as possible till he slips away.

 

-Confused and scared.

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Anonymous's picture
Anonymous
Replies 7
Last reply 10/22/2013 - 7:20am
Replies by: Anonymous, JerryfromFauq, Janner, POW

What exactly IS a good skin exam supposed to involve?  I mean a REAL full body skin check, keeping in mind the patient has a history of melanoma. 

I'm on my 2nd dermatologist whose idea of a skin exam is "here's a gown, leave your bra & panties on" and after few questions and a cursory skin exam is out the door in 3-5 minutes. Then they ask on the way out the door "So, when do you think I need to see you again?  Six months or a year?"  Ummmm...  You're the doctor. Isn't that one of the things I'm paying you to tell me? What do I think?  I think I need a new dermatologist.  THAT'S what I think.

I "fired" the first dermatologist (after several years) because I suspected his skin exam was incomplete.  Now I'm on my 2nd - and his was even WORSE.  (At least the first made an attempt to move my bra and panties aside to see what was underneath - the 2nd didn't even touch me.  I guess I shouldn't have been surprised - my oncologist's referral consisted of "He's a good guy - we go to the same church together". Gotta love the South.)  BUT now I've had TWO dermatologist do skin exams the same way, and I've started to wonder if my expectations are off.

Background - I'm a stage III melanoma survivor, NED for 4 years now. I still visit my oncologist bi-annually for PET scans and bloodwork.  Other than the nurse taking my BP & weight, these visits do not include ANY sort of physical exam.  He seems to rely on the bloodwork & PET scan to tell him everything he needs to know.  He is not a melanoma specialist.  (Yes, if the beast returns, I intend to find a specialist.)

 

"A little ingenuity and a lot of duct tape will solve many problems.", AKC Agility Judges Guidelines

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Replies by: Anonymous, ClaudeM, BrianP, chalknpens, blden2186, Johnfdc7

I have completed the 4 weeks of IV interferon, radiation of right leg, and am starting the self injections in a week. Does anyone have any advise as to the best time of day to administer? I want and need to work so I hope to minimize side effects.

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Anonymous's picture
Anonymous
Replies 3
Last reply 10/22/2013 - 2:53am

New to this forum.  My dear friend diagnosed with Metastatic melanoma.  Doesn't want to give up nothing worked do far.  Any suggestions.  Looking in to clinical ttrials live in Australia

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Anonymous's picture
Anonymous
Replies 2
Last reply 10/22/2013 - 1:39am
Replies by: JerryfromFauq

Friday I had my second PET scan for the year, the one I had back in April of 2013, showed that I was still in remission.  I am expecting nothing less but good news tomorrow when I go for the latest results.  For now Its been two years for myself since my diagnosis.  This year I only had to go twice for my test, since last April i am officiallly in remission.  During my test on Friday, I had to do labs work first, and they wound up poking me and finally finding my vein on the fourth time.  Mayone I will find  soneone that find that vein on the first try next time.  Until tomorrow, I will check back in and let everyone nkow the results of that test.

 

Robbie

I believe in God and his son Jesus, I know that this is not everyones belief. I know that God has me in his hand, I might not like what I am going through but God is the one that gives me strength fromd day to day.

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joy_'s picture
Replies 10
Last reply 10/22/2013 - 1:22am
Replies by: Anonymous, Pink, joy_, Bubbles, King, BrianP, flvermonter

We are going to Moffitt next week for a consult with Dr. Weber.  Just wondering if anyone out there has any tips we should know about.  We are planning to fly to Tampa and back to Atlanta in a day so I am guessing renting a car would be our best option for transportation? 

As far as the melanoma goes - my husband has been on a Zelboraf/Yervoy trial.  He has finished his 3rd infusion at 10mg/kg.  Fatigue has been his main side effect, however in the past two weeks he has had a LOT of hip & lower back pain with some muscle weakness and numbness in soles of his feet.  He had an MRI of the lower back yesterday, and nothing abnormal was seen so they are scheduling him for a full body PET ASAP.  Also his bloodwork was ok with only elevation in LDH (I haven't seen the report but don't think it is crazy high).  They haven't been able to determine what is causing the pain - nerve inflammation or bone mets or what.  So far we haven't seen any improvement and he has new subq tumors.  Although I know it is still too early to tell if he is an ipi responder, we are wondering if now is the time to try to get him into a PD1 trial.  Guess that's what we will discuss with Dr. Weber.

Thanks again for any information or insights you wonderful folks are willing to share!  I will update when we find out more in case our experience helps someone else in future.  (I know that we have benefited from many of your posts.)

Tracy

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dovemed's picture
Replies 1
Last reply 10/20/2013 - 10:00pm
Replies by: dovemed

Find all the information about surgical excision of melanoma at http://dovemed.com/article/melanoma-removal/

DoveMed.com is a physician approved health information portal. 

Thanks and wish you well with melanoma treatment.

God Bless

 

DoveMed is a trusted, physician-approved, and simple to understand, health information resource. At DoveMed, we believe that trusted medical information helps you make better healthcare choices for you and for your loved ones.Visit DoveMed.com

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Tim--MRF's picture
Replies 3
Last reply 10/20/2013 - 9:12pm
Replies by: Charlie S, POW, Phil S

A number of us--including Charlie, me, and several others--received an email from a "Miss Ngone Hadiza" saying she likes our profile and wants to talk with us.  This raises concern that the site has been hacked.

After speaking with some IT experts the situation is a bit different:  

--Only someone who has registered with MPIP is allowed to send messages to others on the board.

--At no time is anyone provided with the personal email address of another membler--all of these messages go through an anonymous server account.

--In order to register you must physically enter certain information that includes some security procedures.

--Once registered you can send email to other members of the board.  If, however, you abuse that privilege you can and will be blocked from the board.

All of the above has been true for several years, and did not change with the new website.

In this specific situation, "Miss Hadiza" has been blocked and we will watch for other suspicious activity.  This person apparent registered in a legitimate fashion, then went through the board selecting users one by one and sending out emails.  This is incredibly insensitive and malicious, and will not  be tolerated.

Special thanks to Charlie and Jan for calling this to my attention.

Tim--MRF

 

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casagrayson's picture
Replies 19
Last reply 10/20/2013 - 4:40pm

I thought it might be helpful for the admins if we had one thread where we could post all the little issues we find as we navigate the new site.  I wrote about one in the "new site" thread, but I think it got buried.  If you have an issue, reply to this thread and use the next number.   Hopefully that will keep it organized.  I'm pulling the first issue from another thread.

 

Susan

Strength and Courage,

Susan

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Jwfd808's picture
Replies 5
Last reply 10/19/2013 - 8:49pm

I just started Temodar this week after ipi which helped with my internal organs but I still have many new tumors on the surface of my skin. Which I hope with Temodar and the radiation that it slows this down while I wit to see about getting on a pD1 trial. 3 days and I'm feeling fine have not felt any side effects yet. But I had no side effects on IPI out side of some fatigue once in a while.
John

I live every day one at a time and thing are what they are

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KRob's picture
Replies 0

This site has been hacked. I, too, have received emails from suspect "members" from this board.
I did not respond to them.

Too bad....it stinks that anyone would hack into any site let alone a cancer forum where you really want to trust the info and people you meet.

"Write it on your heart that every day is the best day in the year." - Ralph Waldo Emerson "Dreary though the path may look to others, it has quiet lights and gentle shades that no other path in life can offer."

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Lisa - Aust's picture
Replies 9
Last reply 10/19/2013 - 7:41am

Hi Everyone,

Just wanted to come and share some great news we received today.

My husband Craig has been waiting to start the Merck PD1 trial for just over 2 months. He had been travelling along really well on Dabrafenib for 2.5 years when all of a sudden one of the nodes he originally had popped up again - measuring 3.5 cm.

Despite him 'timing things well' with regards to his reoccurance, a couple of delays with the trial over here in Perth meant that he has essentially been off any treatment for around 9 weeks. We went to see the Onc today to find out his randomisation and discuss the results of his baseline scan from last week.

As you can imagine, despite it not having any bearing on starting the trial, we were still very anxious about the results. As many of you know, Melanoma is so unpredictable, and being off treatment for such a long period of time - well I dont need to explain what we were worried about.

So you can imagine out shock, surprise and disbelief when the Onc told us that his tumour has shrunk by over 1 cm during this time on no treatment, and no other tumours have popped up. I have heard of spontaneous regression - but never thought it would happen to Craig.

He has stumped his very clever Oncologist and we are obviously still trying to let it sink and and are thanking our lucky stars. After 6 years of dealing with Mel - it was nice to catch a bit of a break today.

To top off the great day, we found out he has been randomised to the pd1 drug every 2 weeks. He is first in WA on this trial and was first on the GSK dabrafenib trial too, 2 and a half years ago. Like I said, he has timed his 2 reoccurances particularly well! Fingers crossed the drug takes care of the rest of that little sucker.

Well, just wanted to share and maybe provide some hope to others out there fighting. 

All the best

Lisa x

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