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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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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HelenQLD's picture
Replies 10
Last reply 10/18/2013 - 8:34pm
Replies by: awillett1991, Anonymous, POW, kylez, Janner

My mums braf test is negative and she has rheumatoid arthritis which means she can't have immunotherapy.

The oncologist has said she can only have chemotherapy which onky has a 10% chance of success.

She has mets on her liver, spleen, lungs and brain.

Where do we go from here?

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tasjacques's picture
Replies 9
Last reply 10/18/2013 - 7:50pm

Hi Everyone,
We want to share our good news with all the warriors who have supported us through this amazing forum.
My husband, Jacques, had treatment with Z back in January - which helped but very shortly developed Stevens Johnson. Then followed treatment with Yervoy in March - after two infusions had to stop because tumors were growing exponentially :( Spent 6 weeks without treatment - the longest weeks ever!
June 7th he started MK 3475, Scans of targeted tumors in May 10th showed: liver the biggest at 5.9 cm x 7.0 cm, another one at 3.9 cm x 4.8 cm, lung tumors were at 2.1 cm x 1.8 cm, and 1.9 cm x 1.8 cm, and many other ones. By August 27th CT scan (12 weeks) all of them showed a 73-85% reduction!!! Treatment center even repeated the CT scans 4 wks later and still showed more reduction :)
We are super delighted, excited, and are so encourage that we are going to beat this beast! (well at least hoping to)
Jacques has come around from no walking, no talking, and sleeping all day ... to having our first hike this past Sunday, and going swimming in the ocean on Monday.
Take care all of you, keep praying, never give up!
Elenise & Jacques

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melissa ann's picture
Replies 4
Last reply 10/18/2013 - 6:27pm
Replies by: kylez, Anonymous, Bubbles, awillett1991

Hello all, just need some thoughts and experiences. My husband, Peck is a stage 4 survivor for over 10 years. A quick summary of treatments....surgery x 4, interferon, GMCSF, NED for 5 years, high dose IL2, Yervoy x 4 infusions, anti-pd1(non-responder)(Moffitt), TILS harvest( no treatment as of yet), IPI /biochemotherapy trial at MDA,and reinduction of IPI x1. Whew!
The latest.... Disease in lungs(small), left neck, left axilla, chest and now 5 very small brain lesions. Peck s currently in hospital dealing with some dehydration issues so we have one on one contact our doctors. Dr. Amin in Charlotte is our melanoma specialist. Today, they are discussing best way to go with treating brain...SRS vs. WBR. Just asking for some thoughts or experiences any of you may have. This melanoma journey is much more tolerable because of all of you and this board....peace and healing to all! Thank you in advance, Melissa

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MattF's picture
Replies 1
Last reply 10/18/2013 - 12:44pm
Replies by: UrsulaZ

Ok I am set up for radiation which will take me into early Dec.

I meet with a different  medical oncologist tomorrow as I went and saw mine today and he had no treatment planned...he does not use interferon and has no trials. He called over to UCLA and they will see me tomorrow to discuss trails and interferon and how it may work with radiation.

So my question is?

Radiation y or n?

Interferon? 

Yervoy Trial?

Zelboraf Trial?

Trial with Radiation?

It is all so new to me.

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MattF's picture
Replies 6
Last reply 10/18/2013 - 12:32pm

I met with the Radiation oncologist today and I meet with the melanoma oncologist tomorrow.

Stage IIIB Paratidectomy / Neck Dissection 3 weeks ago...2 nodes and parotid gland positive.

1st step Radiation 5x/week for 6 weeks.....starting next week.

I will see what the medical side has in store for me tomorrow when i go.

But can anyone tell me about experience with radiation?

Interested in side effects and if it was given with systemic treatment to follow )(ie yervoy trial or interferon) or is it in place of other treatment etc?

was it effective etc?

I guess no matter what i will know the plan tomorrow.

Thanks

Matt

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