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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natasha's picture
Replies 2
Last reply 2/14/2012 - 9:27pm
Replies by: Mike N, aldakota22

HAPPY VALENTINE'S DAY !!!!!!!   WISH YOU A LOT OF LOVE AND HAPPINESS !!

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Anonymous's picture
Replies 3
Last reply 2/15/2012 - 9:03pm
Replies by: runnergirl, Richard_K

Is there an issue with this feature? 

I now receive a message about ' this page is under construction or not available...'?

Luke 1:37

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Roxy1453's picture
Replies 3
Last reply 2/14/2012 - 6:18pm
Replies by: Roxy1453, kylez, Linny

I haven't posted for awhile so I thought I would fill you in. I had a pet scan 2 weeks ago. It did not show any new spots but the one I have showed brighter. It also showed that my colitis was not gone. So I didn't have my third IPI treatment and I'm staying on the steroids. I went in again this past Fri. And will be staying on the steroids for 3 more weeks.

He told me that the IPI has ramped up my immune system with just the 2 treatments and that if I got more it would just creat more problems. He stopped short of saying it was kicking the cancer. It's too soon to know. It's just good to know it has been ramped up.

I pray for healing for all of us, stay strong!

Nancy

"I can do all things through Christ who strengthens me." Philippians 4:13

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Jydnew's picture
Replies 6
Last reply 2/15/2012 - 8:43pm
Replies by: CLPrice31, Leigh, Mike N, natasha, Anonymous, gtown

Hi,

My husband just returned from his oncologist and remains NED 10 years after being diagnosed at stage IIIA.  He had his last CT scan in August, and continues with annual chest x-rays and semi-annual bloodwork.  He was originally dx in January 2002 with a 1.3mm depth melanoma on the right tricep area.  There were micromets in 1 or 2 nodes (I can't quite tell from the path report).  He opted for no further interventions after surgery to remove the rest of the lymph nodes in his armpit.  He is now 36.

I hope for NED for everyone on this board, and wish daily for a cure for this horrible disease.

Wendy

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aldakota22's picture
Replies 7
Last reply 2/18/2012 - 4:29pm

  I am diagnosed with stage 4 melanoma. since last feb. Have been on Zelboraf since sept.12, 2011. Drug is working remarkably. no noticeable tumors on neck.Have had side effects but can live with them.Have a weight loss from 212 down to 196 and steady. Body was firm at start but is now a little flabby.Would love to weight lift to firm up stomach and legs especially.has anyone done this before.Any down side if done with caution and moderation. Would like your input from those who have been thru this.Thanks

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Replies by: Lisa13, Alicia15

For those who've had brain mets (more than 2) and are still living live 1,2, 3 + years later, I'd really love to know what the reasoning of this could be and the treatment that may have helped.  One woman had 3 and that was 5 years ago and another amazing woman had 15 and that's been 2.5 years! !   I know some tumours keep coming and then stop, or others just keep coming and don't stop.  I know there is hope though, but I supposed I need to understand it a bit.

I had 2 brain mets and then got followed up after 8 weeks and found 2 more - very small and nothing more found in my brain (less than 0.5mm) from the brain mri.   I'll be going every 8 weeks to keep tabs on them which I believe is the best thing possible as well as gamma knife.

Lisa

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

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o2bcheri's picture
Replies 5
Last reply 4/17/2012 - 7:30am

 

 

has anyone heard of Cellect?  or tried it?? 

 

been doing a lot of research for my best friend and daughter....

 

check it out... interesting at the least... 

 

http://checkmedaily.com/health-beauty/diagnosed-no-evidence-of-cancer-tr...

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mlbjab's picture
Replies 18
Last reply 7/8/2012 - 11:28pm

A high school classmate of mine was just diagnosed with stage IV melanoma after having a fairly shallow melanoma removed almost 5 yrs ago with negative SNB.  He had GI issues and tests were run that showed the melanoma is in liver, lung and adrenal glands.  He chose hospice and no treatment.  Is there not a treatment or hope for him?  I know it is his choice, but if there is any chance??  He is young (30s) and has children and a wife. 

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gtown's picture
Replies 7
Last reply 2/15/2012 - 11:05am

what's up,

I was just curious as to whether anyone out there can point me to a website or a book that would offer a low sugar diet, I'm looking to wean myself off of sugar laden foods. I've looked at some sites but don't know how legit they are. I really am looking fore a list of foods that contain hidden sugar also, you know foods that you might not think have sugar but do. Also I'm looking for a list of supplements that would help with melanoma specifically, I'm taking a bunch but I just wanted some feedback from people on this website so many I can trim down to the essentials. I'm currently taking carnitine, inositol, vitamin  e, b-12, selenium, co-q10,flaxseed, fishoil,dhea,vitamin d, melatonin, cucurmin... I think that's it. Anyhow if anyone has anything to add, I'd appreciate any insight        

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Lauri England's picture
Replies 4
Last reply 2/12/2012 - 7:55pm
Replies by: NYKaren, scots, DonW, akls

I had my first appointment with Spectrum Melanoma Clinic in Grand Rapids, Michigan.  They were awsome to say the least.  The did get all of my original medical records since the beginning of my melanoma.  I met Sergical Onc, Dermatoligist, and medical onc, and a genetics doctor.  It was very thorough.  I was very pleased with the whole experience.  I did get the results of the altrasound that I had which came back non maliginant non cancerous mass and the 2 moles I had removed were benign.  I was finally told for the first time that I am officially NED.  It was explained to me that the PET scan that I had done would not have picked up the nodual on my lung that they were watching because of the size of it and in there opinion I should have had another CT scan with contrast instead of PET scan which will only pick things up that are a certain size or bigger.  They do want another CT scan done in April to re check the lung nodual for change but other then that NED.  They said the nodual on my lung is so small that they are not concerned about it at all at this time but they do want to watch it, if it is still there even. Great new to me!!! On with life again with a lot less worry.

Don't sweat the small stuff. There are bigger fish to fry!

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CaringforMom's picture
Replies 4
Last reply 2/15/2012 - 6:14pm

Hello all!

My Mom ( age 71) is undergoing ipi treatment.

Her tumors are in her lungs and liver.  The liver is very enlarged and causing her pain and discomfort.

She was in a clinical trial for the next generation of ipi but had to stop due to severe rashes/itching. 

Just had her 3rd of 4 ipi treatments but is having severe fatigue and nausea issues.

She has lost a lot of weight.

After experiencing low blood pressure and a high heart rate along with "floaters" she had another MRI last Friday.

Now has brain mets - was clear on her scans in December so these are new.

Just had a consult and she will be having gamma knife radiation to treat the spots on her brain which are small.

My main concerns are her major fatigue and nausea.  She has had to have IV fluids for the past 2 weeks or I think we would have lost her.

She is fighting hard to survive to help with my Dad who is suffering with dementia.

Two parents with major health issues....I feel like I am drowning. 

She is having a high resolution MRI and CT Scan on Monday to prepare for the gamma knife radiation.  She mentioned that the nurses said the 4th ipi treatment might not happen on Tuesday due to the tests on Monday.

I am concerned that she needs all of the ipi possible to try to get the melanoma in her liver to respond.

????

Also, not really clear how much time we are looking at for survival.

Liver, lungs and now brain.

Very scared.

I can do all things through Christ who strenthens me.

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Hello all!

My Mom ( age 71) is undergoing ipi treatment.

Her tumors are in her lungs and liver.  The liver is very enlarged and causing her pain and discomfort.

She was in a clinical trial for the next generation of ipi but had to stop due to severe rashes/itching. 

Just had her 3rd of 4 ipi treatments but is having severe fatigue and nausea issues.

She has lost a lot of weight.

After experiencing low blood pressure and a high heart rate along with "floaters" she had another MRI last Friday.

Now has brain mets - was clear on her scans in December so these are new.

Just had a consult and she will be having gamma knife radiation to treat the spots on her brain which are small.

My main concerns are her major fatigue and nausea.  She has had to have IV fluids for the past 2 weeks or I think we would have lost her.

She is fighting hard to survive to help with my Dad who is suffering with dementia.

Two parents with major health issues....I feel like I am drowning. 

She is having a high resolution MRI and CT Scan on Monday to prepare for the gamma knife radiation.  She mentioned that the nurses said the 4th ipi treatment might not happen on Tuesday due to the tests on Monday.

I am concerned that she needs all of the ipi possible to try to get the melanoma in her liver to respond.

????

Also, not really clear how much time we are looking at for survival.

Liver, lungs and now brain.

Very scared.

I can do all things through Christ who strenthens me.

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Karin L's picture
Replies 5
Last reply 2/12/2012 - 8:38pm

Posting this for responses from other IL 2 warriors  as well as putting this post out there for any future searches someone might need. 

I am now 8mos. out from HD IL-2 treatment (4 hosp. stays, 2 courses) and as of last CT scan (12-9) , still responding.  Most disease has either disappeared or shrunk 80% or so.    So not really a complete responder as of yet, but hopeful I can get there!  Not complaining either.  Next scan in early April.

In the meantime, I developed neuropathy in both hands and feet.  In Nov. I also developed tinnitus (ear ringing constant).  Dr. tells me these are side affects from the systemic treatment and it means my immune system is still reved up.  Anyone else experience the same types of things? ( It's always comforting to know you are not the only one, ya know?)  Dr. also says it could be life long issues  (not complaining again), just wondering if others were told the same? 

Do auto immune responses normally show up so long after treatment?   Anyone know how long your immune system keeps fighting without a little extra help (other treatment)?  I still don't quite understand how this cancer responds or quits responding, etc....maybe none of us do (except maybe JimmyB, *smile*).  Dr. is SO confident yet I sitll walk on shards of glass. 

I read and pray and support silently each and every one of you here, everyday.  I am just not a poster : (.  Drives me nuts. 

Karin 

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himynameiskevin's picture
Replies 9
Last reply 2/12/2012 - 5:26pm
Replies by: benp, himynameiskevin, Lisa13, Fen, jag, Anonymous, Karin L, scots, aldakota22

Three days ago, on the 8th, I completed my planned stereotactic radiation on the bigger 2 of 5 tumors in my brain, which luckily were still pretty small (largest one at about 9mm). And yesterday, the remaining treatable 3 were targeted. The doctors said all went well, everything matched up perfectly, and they feel really good about the whole thing. I was supposed to have the remaining 3 taken care of Thursday, but an hour or so before my appointment I had another seizure. It came on slowly this time, slow enough for me find Brenda, let her know, prepare, lie down, and brace my self. In a way, the knowledgeable anticipation was pretty stressful though. Luckily it only lasted about 30 seconds this time, but I was in a slight lethargic state for a little bit after that. I woke in the ambulance and spent a couple hours at the ER to be safe. They checked my vitals/blood/electrolytes. Everything looked fine, no scans were needed because they knew what caused it and I was home in a few hours. Besides a little fatigue from the whole experience and a bit of stress from paranoia that this could happen again at anytime, I’ve been doing ok. My oncologists did up the dose of the anti-seizure medication and explained that should do the trick, some people just need a little more and reminded me that when they have confirmation that this radiation is successful as they think it will be, they’d like to have me taper off any/all medication as soon as possible. I'll be getting a follow up MRI in 2-4 weeks. And go from there.

Lastly, I have a chest/abdomen CTscan this Wednesday, to check and see if this Yervoy that I finished on Dec 20th is kicking in and making any progress on my lungs. That sure would be nice. But I've also heard that even this early, may be too early to tell. But we'll see. Other than that I'm doing ok. I have noticed what seems to be one swollen lymph node by my groin. I have been through the ringer lately and I had a pretty decent cough/cold for a few days but I feel I'm on the mend. I know on one hand a swollen node could be a bad sign of something, but then again, on the other hand, when I did IL-2, and also the adoptive cell therapy at the NIH, during the times that both those treatments were "sort-of" working, I had a few lymph nodes swell up for a little bit.. so maybe it's something trying to work? I don't know, but that's what I'm hoping for.

Thank you all for reading and being there with for support during these crazy times.
Talk to you soon.

-Kevin

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j.m.l.'s picture
Replies 2
Last reply 2/11/2012 - 9:48pm
Replies by: LynnLuc, Gsnowindlon

Just had several radical resecctions under my arm. Tumors had grown (1 fairly large) and were taken out.

Surgery was done on 1/30. How long does it take until I feel like me. Very tired and not up to par.

Also, RADIATION needed. What is that like. Any help on the side effects?? Any advice??

thank you JML

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