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 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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flvermonter's picture
Replies 8
Last reply 10/24/2013 - 1:09am

Hello,

I haven't been on in awhile and very nervous today.  My husband had 5 weeks of 2 treatments a day for lung cancer and melanoma.  After which we discovered his bovine aortic valve needs to now be replaced.  This has been an awful year.  We get the readout tomorrow of the PETscan from last week.  God willing there are no hot spots of melanoma or lung cancer. 

I am staying so positive, and the kids will ask how are you. Of course I say fine, but it requires me to continue to not think of "what ifs".  I guess it because tomorrow we will know, all the anxiety is kicking in for me.  So scared that they will find something.  That would compromise the valve in valve replacement trial procedure for him.

I guess my questions are, does radiation impact the calcification on a heart valve, or has anyone heard of that?  I will be asking the Radiation Onc tomorrow as well, but just curious.  Other question is has anyone experience with NOT taking the medical onc treatment after surgery?  My husband decided not to take it until after this PETscan.  Thinking if no spots, he would not take it. If there are spots, now sure how he can handle treatement with his valve.

Thanks, Mary

 

 

Hugs to all, patients and care givers.

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HelenQLD's picture
Replies 6
Last reply 10/26/2013 - 2:46am
Replies by: HelenQLD, JerryfromFauq, POW, Anonymous

My mum starts fotemustine chemo on Friday.  Anyone have any experience with this treatment?

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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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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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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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HelenQLD's picture
Replies 14
Last reply 10/23/2013 - 6:05pm

What is everyone's experience with natural therapies.  Mum is taking vitamin d3, turmeric, graviola and now drinking sour sop tea.  Trying to get her into juicing as well.

 

we are trying everything as her only treatment is chemo due to her autoimmune disease.

 

we are in Australia.

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Charlie S's picture
Replies 7
Last reply 1/15/2014 - 6:59pm

Yeah, yeah, I know I am a pain in the butt.......................but; after many years here and with the latest "re-launch" of this website, , it is quite apparent that there are major security flaws, so be carefull.

Today, I received six e-mails,all of which came from "tor" sites via MRF.

For those unfamiliar with  a "tor" browser , the object is to disguise and misdirect.

Given the makeup of the new MRF Board,  it is dissapointing this would happen.

Whats up Tim?

If you like, I have a packet capture of the trail if you like.

Regardless, this site has been compromised and I do not like it.

Charlie S

 

 

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MattF's picture
Replies 13
Last reply 10/31/2013 - 2:01pm
Replies by: Michelem, BrianP, Gene_S, POW, MattF, Anonymous, sailinjeffnk

I saw the Oncologist at UCLA today. Stage IIIB head and neck primary on ear with 2 nodes positive 9 months later, now parotidectomy and neck dissection....treatment options (and believe me I feel so blessed to HAVE options) are:

1.Radiation to head and neck

2.Interferon

3.Yervoy v interferon Trial

4.Zelboraf v placebo Trial

Due to timing and 2 different care facilities I am unable to do the radiation and the other treatment together.

I'm leaning toward one but interested in any information or thoughts as I want to use the weekend to decide.

Thanks in advance Matt

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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 1
Last reply 10/18/2013 - 11:25am
Replies by: Anonymous

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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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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bethwkiss's picture
Replies 4
Last reply 10/18/2013 - 11:03am
Replies by: bethwkiss, MattF, sbrooks90

I am new to this site was told today when I went after follow up from sugery that my melanoma is stage 2b and that its the agressive kind my brother Joe Wray passed away from same kind in 2005 and i'm lost on a few matters like is there treatment that I should look at to help it stay away and since it runs in the family should I push for perventive treatments no matter what I have talked to many who say just go to doctor every 3 months and watch for new groth but with my brothers it was so fast he was gone with in 2 years but his was stage 3 when found any input any one could give that would be helpful would be wonderful .

 

 

                                                                                  Thank you in advance 

 

                                                                                                                         lisa

 

Lisa Newcomb  

Never give up !!!!!!

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Hello my name is Barbara Wagner and I live in Mansfield Texas. I use to come on here all the time for support but as time passes we channel into new things. I was first DX in June 2009 invasive in mt right breast in situ my breast surgeon told me I was only the ND person she knew of having it ulcerated in breast in situ. It has been a long journey with many up and downs and depression. I started not eating healthy and not taking care of my self until first I decided to make changes.I have 3 kids and two in high school now all I prayed for was to live long enough to see my kids graduate now I pray for a long life and making a difference.

I do all the local walks,near and far which 4 years ago there was no mention of Melanoma the cause has came a long way and I;m very passionate about spreading awareness and making changes before now I was like what can I do? Well we all can make changes in our own community,schools, city boards I mean everything we have it in us to make a change to be heard and people hear our voices, My daughter has cheered her whole life and competively she was required at a very young age to tan they tell these girls there white WHAT OMG but it was before I knew of Melanoma and the dangers .There is hope.

 

What I would like to see every one do is to make a change. A  lady that is in charge of The Miles For Melanoma walk here in the DFW area has inspired me so I jumped on the band wagon full trottle.I know can see my purpose were GOD wants to lead me I am in a happy place for the first time in many years I actually smile daily.

 

I hope everyone to know there is hope don't ever give up. If you live near or far please register for the walk( there will be a live band,mama grams (go figure) it will be worth it and raising money for a great cause rather being a warrior,care giver,loss of a loved one we need to honor those people!1 I'm on Facebook more often and you can always message me if you need support or to vent or to find out what you can do in your community..

 

www,mamtexas.org

 

Hope to see of you there and again I'm here for support for everyone I know all to well the crazy life we lead once we are DX. Many blessing to you and yours.

 

Barbara Culpepper Wagner 

P.S. Forgive all the typos 

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