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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triciad's picture
Replies 6
Last reply 8/10/2012 - 9:44am

Hi Everyone,

My new oncologist told me to take resveratrol, tumeric, and paba.  When I went to buy the resveratrol, there were so many different kinds, I just came home.  Does anyone have any suggestions as to what kind, brand, and how much?

Thanks for your help and best wishes for good health to all warriors!

Tricia

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EmmaR's picture
Replies 17
Last reply 8/22/2012 - 10:11am

I just stumbled across this website today and I'm not really sure how this all works. I got diagnosed with stage 3a melanoma a few months ago and have undergone two surgeries already, and am about to start interferon in a few days. 

I was wondering what type of stuff I can expect during the initial weeks of treatment? I know everyone is different but if you could share any experiences you have had that would be greatly appreciated.

I'm really scared about the upcoming year, and its nice to have found a place where I can know I'm not alone.

Livin' Lymphless

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Lori C's picture
Replies 4
Last reply 8/9/2012 - 7:12am
Replies by: Lori C, lhaley, Jeff's Mom

I wanted to check in and say that I still read the boards and am keeping all of you in my thoughts.  I have not seen any posts from Charlie in a long time and if you are out there, Charlie, I hope you are doing great.   Am praying for HimynameisKevin and all others who are having struggles with this illness.

I have been trying to keep up with melanoma treatment news because I am doing some writing (for school - I'm in DePaul in Chicago) on the US clinical trial system.  If anyone would like to discuss their experiences with the system of locating and participating in clinical trials with me, please email me!  Brennan07@aol.com

I am also writing about Will.  A week ago, I testified in front of the Illinois General Assembly hearing on abuse and neglect of people with disabilities to tell Will's story.  I have written about it on a blog I created for him.  His melanoma fight is a big part of it, and thought some of you might be interested.  Will was an amazing warrior in all his battles.  I miss him constantly.  The blog is JusticeForWill.wordpress.com

Lori

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sandywebb's picture
Replies 4
Last reply 8/9/2012 - 4:22pm
Replies by: Snickers60, Janner, sandywebb, Anonymous

Well, had my 5yr. scans and I had been NED this whole time. Got results yesterday and they are showing "A slightly irregular noncalcified nodular opacity has developed in the left upper lobe measuring up to 5mm in diameter. The differential diagnosis includes metastatic disease, primary lung neoplasm, or an unusual small focus of rounded pneumonia."  My doc has me scheduled for 3 month re-check scan to check the progress of the nodule to see if there is any change. Needless to say I'm pretty much a basket case right now. Any thoughts on this??

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himynameiskevin's picture
Replies 22
Last reply 8/9/2012 - 8:10pm

Hi this is Brenda writing on behalf of Kevin. Unfortunately I had to check him in to the hospital today. He began having intense pain in the lower part of his head Sunday night, lasting all day Monday. He was already having trouble eating, what with all the stress of waiting for scan results, and the pain made it worse. Unable to sleep or hold any sort of liquid or medication down, we made the choice to go to the E.R ,  we were only there for an hour, they gave him a prescription for pain (Percocet) , told him not to stress, and sent us on our way.

The pain medication didn't help, after numerous calls to his radiation oncologist, we got a call back with the advice to have him admitted. Although his wish was to zap the remaining mets in his head and start IL2 and possibly go back on Zelboraf it looks like we may have to take another route. Because of all the swelling in his brain he is back on a steroid (for now),  with the addition of new mets in his lungs and one in his hip area, the plan now is to do whole brain radiation and follow up with Temodar, with the hopes of some brain stabilization in order to be eligible for some clinical trials (fingers crossed).

Even with this small bump in the road his spirits are still higher than ever. He's a fighter, he's Kevin. And Kevin doesn't give up.

His mpip family has always had a special place in his heart, so i ask all of you to please send Kevin some good vibes.

 

i wish all of you love and healing.

-Brenda.

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awillett1991's picture
Replies 4
Last reply 8/8/2012 - 5:35pm

I'm a little over 3 mos on Zel, it's working, and finally I am feeling like I'm past the worst of the side effects. I was diag in Jan with a cardiac tumor, and June scans show it is shrinking. Hopefully nothing else will crop up - next scans in 3 wks.

Today I asked my doc about stopping Zel and switching to Yervoy. My thinking is that my tumor burden is low, and maybe Yervoy will work better now rather than later. I would have Zel in my back pocket if needed, assuming it doesnt fail me before then. I am not a good trial or IL2 candidate bc of my cardiac involvement, so my future options are pretty limited. My Mel has been a slow growing kind so far.

I'd appreciate any ideas or thoughts you might have - my doc is mulling it over. Just trying to make the most of my options. Where is a crystal ball when you really need one?

Thanks!

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Jydnew's picture
Replies 7
Last reply 8/8/2012 - 7:42pm
Replies by: Gene_S, Jydnew, DebbieH, akls, Anonymous

Hi all,

My husband has been NED for 10.5 years - IIIA at diagnosis in Jan 2002.  This is the first year he won't be getting a scan.  He will get the usual bloodwork and oncology appointment.  What is that worth?  Everything I've said seems to say that bloodwork is only indicative of a recurrance when the cancer is very far gone, and that the patient is the most reliable person to catch a recurrence through symptoms.  He's going to get bloodwork twice a year and a chest x-ray once a year (in winter) from this point forward.

I read that conditional survival puts his chances of continuing NED at the same rate as someone who was diagnosed at stage I.

Wishing many years of NED to everyone here...

Wendy

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Theresa123's picture
Replies 1
Last reply 8/8/2012 - 4:32pm
Replies by: louwpb

Hi,  I found out I have this gene in my melanoma tumors.  I am trying to find out information.  Is this gene inherited?  I have a daughter and I hope I didn't give it to her.  I am being evaluated for Zelboraf.

thanks,

Terri

Stage 4

Every day is a miracle.

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NYKaren's picture
Replies 9
Last reply 8/9/2012 - 11:53am

On the positive side, my adrenals seem to be functioning, so I'm off hydrocort.  Just to make sure, I'm going for a stimulation test beginning of Sept., sooner if I don't feel well.  Also, after second infusion of Remicade, my colitis completely disappeared.  As I've said, it's like a miricle drug.

On the other hand, none of my treatments  have stopped the progression.  Radiation results were temporary--side effects are permanent. (bald spot, lack of saliva, can't open mouth wide, etc)  i wouldn't even give them a second thought if it had helped, but, as soon as the radiation was stopped, the mets were on the march again.

Yervoy #1 I got through with minimal side effects--was kept on Budesonide for diarhhea and dealt with fairly severe rash but alas, didn't stop the mel.

Got through every single bag of IL-2 like a champ, was doing so well after second round, I went back for a third.  Guess what--no lasting remission.

Yervoy #2 caused colitis and colitis treatment caused adrenal insufficiency.  Yervoy was March/April, finally back on my feet.

Continual freezing of mets/applying Aldera is of minimal help, some mets do disappear, but others keep spreading.  The met in my ear is getting closer to the drum.  Seeing surgeon at Sloan who has ear experience on 8/28.  (oh the joys of trying to get doctor appt's in August--two docs tried getting me in sooner!)

I have not been eligible for PD-1 trials when there were seats...usually no measurable disease on NON-IRRADIATED skin.  NOW, I'm on my fourth treatment, so that disqualifies me from Merck, and Remicade disqualified me from BMS.

My fourth and latest treatment is Temodar.  If Temodar does nothing, Dr. Wolchok will ramp up to combo chemo.  He told me that there will be other drug companies developing Anti PD-1 drugs, and his hope is to keep me stable until another trial becomes available.  Of course I am BRAF and C-Kit negative.  I am feeling small nodule on my collar bone, will ask surgeon to do a needle-biopsy. 

Dr. W. was thinking down the road about TIL, so he tested my blood, and of course, I don't have the right (something or other) that NIH would want, so another dead end.

I do think that all these treatments might have slowed things down, the glass cannot be half empty, but must remain half-full.

That's my update.  Take care everyone; you're all in my thoughts.

Karen

Don't Stop Believing

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Laurie from maine's picture
Replies 12
Last reply 8/9/2012 - 6:45pm
Replies by: Gene_S, Anonymous, TSchulz, Laurie from maine, NYKaren, Phil S

Hi,

I am in a limbo phase at moment while I wait for a zapped brain met to "calm down".  I will have scans in a month to see how brain is and then have to chose from the "short list" my doctor as suggested. 

His suggestions are IL-2 or TIL. (I am leanings towards IL but I was told if scans show brain involvement on next scans IL will not be an option as it doesnt cross brain barrier)   Doctor  and I will continue to look at PD-1 trials but he is pesssimistic that I would get a seat as there are few trial and brain involvement moves you down the list he thought, but I still will look/hope and apply.  BUT meanwhile have to have another game plan as back up.

I was told it would be very hard to push for a reinduction of IPPI for me as i was a mixed responder with partial growth or some shrinkage in most tumors but real growth in my shoulder tumor.  I was a partial responder (story of my life with melanoma it seems) with BRAF and grew 3 very agressive tumors in my intestines so BRAF scares me as a choice to go back to.  I am going to research BRAF MEK combo but I believe my doctor does not think I qualify for that one? not sure why.

I have just found a new small tumor on my other shoulder and this one is painful - that is new for me most of mine are not painful, it makes me scared that cancer is starting to ramp up on me.  

I would appreciate any thoughts or input from people as I sit in limbo I can do research and come in armed with my own thoughts on plan after I hear my scans results.  I am currently getting radiation on my shoulder to cut it down a little as it is a very large tumor.

 

you are all in my thoughts and prayers-thank you

laurie from maine

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Dgentz's picture
Replies 3
Last reply 8/9/2012 - 4:39pm

Not sure when I last updated, but my IL-2 was not very successful, so on 7/9/12 I started Zelboraf. Dr. Started me on 4 pills a day, increased to 6. Now moving slowly toward the full 8 (adding 4th at night for 5 days then to morning dose). Got BAD sunburn - apparently shade is not safe enough! ;)

Joint pain has been my worst side effect though. Has anyone tried any supplements like Osteo Biflex (glucosamine)?? Advil doesn't seem to be doing much lately.

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Anonymous's picture
Replies 2
Last reply 8/7/2012 - 5:34am
Replies by: aldakota22, sharmon

For those familiar with Peter Ogle's blog http://www.theogler.blogspot.com/2012/08/family-update.html ) this is the most recent entry regarding Peter. For those so inclined, the family is asking for prayers for Peter...
 
Sunday, August 5, 2012

Family Update
Guest writer: Nick Ogle

Despite an encouraging PET/CT report from Tuesday's trip to OHSU, a CT scan taken at Good Sam on Saturday showed a large tumor on the right side of Peter's brain located in his parietal and temporal lobes. Because of its size and the swelling caused by it, Peter is undergoing surgery to remove it today in Providence Portland Medical Center. Because melanoma brain tumors bleed, there is a lot of blood clotting in the area surrounding the tumor, which will also be removed.

We are thankful that the tumor is on the right side of the brain, Peter's nondominant side. This means his speech and memory should remain unaffected by the surgery.

We expect Peter to be in the ICU for the next couple days as he recuperates and is monitored closely.

Hold him in your prayers. 

Luke 1:37

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Vermont_Donna's picture
Replies 10
Last reply 8/10/2012 - 11:18am

Hi everyone,

  I havent posted in a while...have been busy working and enjoying life. I am now 18 months NED!! In July 2012 I had my quarterly oncology checkup, PET/CT scan, and today had a followup ultrasound of a specific "hot" spot on my leg that didnt show anything to biopsy. So this is the longest I have been NED since i was diagnosed with stage 3a melanoma cancer in Septermber 2006. For those who arent familiar with my history, you can peruse my profile but I have had many treatments to my leg (where the melanoma has been) including interferon, leukine, radiation twice, isolated limb perfusion and ipilimumab (Yervoy). Yervoy was my last treatment that I did, and I had four doses, 3mg/kg. I had relatively few side effects. I have moderate lymphadema and neuropathy in my right leg and wear a compression stocking and do maunual lymph drainage daily.

 I just wanted to share my good news and wish everyone well and the success (NED) that I have finally achieved. Jimmy B says if I stay NED three years then maybe I can say "cured"?? Jimmy...I am halfway there!!!!!!

Hugs to all,

Vermont_Donna, stage 3a

 

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Gene_S's picture
Replies 2
Last reply 8/9/2012 - 7:17pm
Replies by: Gene_S, ToddC

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Gene_S's picture
Replies 2
Last reply 8/6/2012 - 11:51pm
Replies by: Gene_S, LynnLuc

Quercetin, a polyphenol found in apples, onions, green tea and other plant-based foods, is a quinone that has shown an interesting effect on melanoma tumors.

In low concentrations quercetin behaves as an antioxidant, yet at high concentrations it becomes a cell-damaging pro-oxidant.

 

 

More info can be done by searching " Quercetin and Melanoma".

also "Science codex and Treating melanoma and brain cancer without chemotherapy".

also see: 

http://www.james-arond-thomas.com/template.asp?articleid=125

Best wishes,

Gene

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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