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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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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mama1960's picture
Replies 8
Last reply 8/16/2012 - 4:51pm
Replies by: mama1960, TSchulz, Anonymous, sharmon, aldakota22

Hi everyone.

This forum was a life saver for me when I started this journey. I was diagnosed in August 2008. Had tumor removed from sole of right foot. Did the year of Interferon. Scans have been clear.....until now. Had a yearly scan a couple of weeks ago, and it came back abnormal. Two spots lit up, one in a lymph node in my right groin and one in my colon. Sent the scan over last week to a radiologist to see if he thinks we can do a needle biopsy, or if it will have to be surgery. No word yet. Apparently he was out of town for week and might look at it today. Of course everyone is telling me it might be nothing but and infection or something, but in my mind I think it will be the big M. Will posting here, and look forward to the wonderful support that has always been here.

It is what it is.

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Kelly7's picture
Replies 5
Last reply 8/7/2012 - 11:11am

My brother(37) has stage 4 melanoma on his lungs. In February he underwent IL2 with little positive results so the doctor had him undergo Yervoy starting in April. His only side effect during the treatment was that he lost some hair and his hair turned gray. He finished his treatment in June and went back in July for his 6 week scan. At that time, the big tumor shrunk, and the smaller tumor was GONE!!!!! 

Fast forward to 2 weeks ago, he started to get really bad headaches, and was super tired. Went in for more scans and tests and it was determined that his pituitary gland was swollen causing the severe headaches. He was sent to the hospital for 2 days and is now on steroids.  Now this week he has developed severe stomachaches. He went to the ER last night, and they did many tests. THey think its gastrointestinal. 

Has anyone else had this? I keep reading the side effects on the Yervoy website and they say that the side effects can be life-threatening.....I am soooo worried!

 

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Mymlan's picture
Replies 8
Last reply 8/8/2012 - 10:36am
Replies by: Mymlan, Anonymous, Janner, Gene_S

Hi all, 

I had a wide re-excision for a thin melanoma of the Left posterior ear 3 weeks ago. It was grafted and is healing well. The melanoma was removed by a Dermatologist on June 6th. Pathology report states Clarks Level II, Breslow .25 mm, no ulceration, extensive regression, mitotic figures not applicable (small dermal component), epitheliod cytology, no identified melonacytic nevus, non-brisk tumor-infiltrating lymphocytes, no perineural/vascular invasion identified. 

Also, found a strange-looking mole in my scalp on the Right side of my head, did a 2 MM Punch Biopsy, which came back Friday as precancerous, according to the Oncologist. Now I am being sent to the MD Anderson Melanoma Center where they want to do a full body scan to check all of my moles. 

About 2 weeks ago, I noticed several small, new pigmented areas on the backside of my left ear, they are all in a row up and down my ear. Two are pretty big and kindof a rectangular shape. They are getting darker as time goes by. They don't feel "bumpy" but they do have a slight rough surface. What are the chances of this being more Melanoma..?

I noticed a few more similar spots under my left armpit last night. One big and two small, they are very faint but they are there. Has anyone else had a similar experience..?

Thanks.

"The journey of a thousand miles must begin with a single step" - Lao Tzu

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deardad's picture
Replies 5
Last reply 8/6/2012 - 6:14pm

Does anyone think that 8mg of Dexametheisone is too low for someone with brain mets with paralysis?

Do you think we can increase this dose? Does anyone know what are the negatives of doing so are?

The onc said it might help, but didn't recommend it? I don't get that....and in the heat of the conversation we came out not knowing whether it was an option or not...he just didn't recommend it.

We realise dad has only a short time but is there anything that can help or has helped your loved one with brain mets before they passed?

Dad's appetite was great a week ago now its a battle for him to eat.....I think that's more about loosing his sense of taste.

We are caring for him at home, he is still lucid and his old self personality wise but as I posted earlier on he is now in a wheelchair, experiencing mild blurred vision and dizziness. He slips in and out of nodding off, but when stimulated can concentrate and engage in conversation for over an hour.

What a horrid, vicious cancer......

Nahmi from Melbourne

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Vernon123's picture
Replies 1
Last reply 8/5/2012 - 2:46pm
Replies by: DonW

Hi. My daughter (14 years old) was diagnosed with superfiscial melanoma.
Breslow 1.3
No ulceration
Clear margins
Clark level 4
Mitosis 4
No satelites

I tink I understand that the next crucial ting know is to determine if it has spread to the lymph nodes right? How likely is that to happen considering depths and the clear margins? Is that the worst case scenario? If so then what is next? Chemoterapi? Hard to even think such a thought.

Would be glad to hear if some of you could light me up a bit on this field.

Regards Jan

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Gene_S's picture
Replies 1
Last reply 8/5/2012 - 11:33am
Replies by: Linny

Anyone know how Yoopergirl is doing?  I believe her last post was in July.

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

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dawn.spiering's picture
Replies 3
Last reply 8/5/2012 - 6:37am
Replies by: natasha, o2bcheri, Swanee

Hi my name is Dawn. I have just been diagnosed with melanoma . In 2007 I had surgery for uterine leiomyosarcoma and there was no adjuvent treatment. In 2008 I noticed a small lump in my neck and applied for insurance coverage and denied because of previous diagnoses, for the next three years I've been fighting for state insurance coverage and after quitting my job and allowing me and my disabled son to become homeless. I finally recieved medi-cal. The lump is now huge about 5 by 5 by 4 cm and is pressing on the caratoid artery, which means alot of pain. I am waiting on insurance approval for surgery which is scary sense Molina is fighting on paying any test the doctors need to help me. I think they are hoping I croak before approving surgery :(. So thats my history.

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

July CT and MRI were both clean as they've been since 2009.   I pressed my Onc to clear with the trial company (MDX-010) that I could move from quarterly scans to a 6 month scan frequency.  Great feeling as I now have no planned medical appointments until after the New Year.

Hang in there everyone!  Prayers and good vibes sent to all in this fight..

- Rocco

Stage IV since August 2005, IpI responder - last dose in Feb 2009

Luke 1:37

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I'm still reeling from results I received late yesterday. I'm a 47 year old female who sees a Dermatologist twice a year for prevention. I had a trauma several months back and a thoracic x-ray showed what they thought was fluid. Well long story short it was not. I'm reaching out on any suggestions, recommendations that anyone may have. Thank you.

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I'm still reeling from results I received late yesterday. I'm a 47 year old female who sees a Dermatologist twice a year for prevention. I had a trauma several months back and a thoracic x-ray showed what they thought was fluid. Well long story short it was not. I'm reaching out on any suggestions, recommendations that anyone may have. Thank you.

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himynameiskevin's picture
Replies 13
Last reply 8/6/2012 - 7:56pm

Hi all,

Sorry for the delay, and the length, but here's the latest..

I had an MRI on the 23rd that showed new/growing tumors in the head, none over a 1 cm. A day or two later I noticed a lymph node in the groin was swelling, this same one appeared around the same time of brain tumors in Jan/Feb. It completely went away after starting Zelboraf, not even showing on a PET scan. It's weird to me that the same one, same spot, came back now, same time as my brain is under assault again... maybe there's a correlation?

I had a "detailed MRI" yesterday, for a clearer picture, and preparation for more SRS or WBR. But no call from the doc. She and I have always had an agreement that'd she calls me the day of the scan to update, whether good news or bad, she always has. But not this time, I'm really hoping it's just because theres not really any change from this scan and the last.

I finally, got my PET scan scheduled for Monday morning, it's a little upsetting it was ordered over a month ago and should've been done weeks ago. But people make mistakes, and the milks been spilt I guess.. moving on.

As I have progressed I have been on and off of Zelboraf since the 23rd. Due do different Dr's opinions. But as of the 2nd, I'm off completely, for now. For two reasons, "Zelboraf and radiation do not mix well together. There has been some bad interactions seen at sites irradiated in patients taking the medication. Ideally a patient should stop at least 5 days prior to radiation. And... patients who take a break from the drug sometimes regain response to the medication. This has been seen and is now published."

So here's the plan.

It's unlikely, but should all the stars align in my favor, my PET would show complete clarity of the body, except for the node, indicating there's some connection between the two, maybe the node is "seeding" my brain. They surgically remove or SRS the node, and tell me my head is SRSable again, and they do that, rather than WBR. They're all taken care of, never to return and I live a long life, learning so much from this experience, and helping others along the way until this beast is tamed. Which seems is just around the corner, if we could just hold on a little longer...

The more "realistic" plan and near to last option that's been discussed and I'm hoping for: 1. Keep off zelboraf. 2. If scans aren't too bad, get SRS, as WBR might change things. 3. After radiation, wait a week, then start zelboraf for a week. 4. Begin IL2 the next day. I would like this option, IL2 was the first thing I did and although it didn't cure me, I tolerated it well (14 bags and 9 bags) and although the dozens in my lungs and nodule on my chest progressed.. the good sized tumor in my liver just vanished without a trace the cluster of mass on my back softened for awhile. I guess I'm just excited about this, because it's another option.

If scans look bad. Or I make it through the IL2 with no benefit. Traditional Chemo is an option and something I have never tried. Most likely Temodar. Maybe Temodar and Zelboraf together..

And maybe, if I could buy a little time, maybe I could get on one of those "Compassionate Use Trials". If one shows up. One of those MEK inhibitors or AntiPD1 things I keep hearing about. I'm hoping something's gotta eventually work right?
 

Thanks for hearing me out. Any insight or opinions? Encouraging relatable stories?

Sorry If I've missed out on keeping up with some of you, there's so many people on here, and if you miss a day or two, the board just flies by.

-Kevin

 

I've been watching the Olympics lately, jealous and envying the health, energy, and strength of all these athletes. But got to thinking, in a way, we're just as strong and talented as any of these athletes, if not more.. And were a team too. Helping each other fight, not for a gold, but for life. A relentless mental, physical and emotional struggle on a whole nother level. We're basically Olympians.

I hope to post decent scan results this week and have a "set plan". Talk to you soon.

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Gene_S's picture
Replies 3
Last reply 8/6/2012 - 10:07pm
Replies by: Anonymous, ToddC, chalknpens

Here is an excellent video about cancer in general, it is a must see video!

http://www.youtube.com/watch?v=WnaBG177VIw&feature=related

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

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deardad's picture
Replies 5
Last reply 8/5/2012 - 11:48am
Replies by: Anonymous, Jeff's Mom, saddaughter, deardad

My dad is now in a wheel chair, he has no headaches buts needs mum to carry his weight to bathroom etc. He'a had this shocking flu that robs him of sleep at night and has for the last week. He's so tired and nods off during the day. Its so hard because I know he is dying and it's so hard to know whether it's the cancer or lack of sleep from coughing all night that's making him tired.

We have booked in to see the neurosurgen on the the 16th of August for SRS. He looked at dad's MRI and wants to talk to him about SRS to try to prevent further paralysis. Personally I'm not confident he'll make it to that appointment the way things have declined so much in a week.

Sorry to give you all the this blow by blow description.

Palliative care have been fairly hopeless in getting drugs to us and mum is so determined he will die at home under her care.

I called a GP in today to see if dad could have some sleeping tablets and he recommended half dose (he's never had one before).

My bro in law said not to give it to him with bronchitis, he needs to cough.

I'm not sure what to do now...take the pill or not? He's slowing down....does anyone know what I should expect roughly from now on?

Can't believe I'm now in here in this dark place that I always put away in the future.

Thanks everyone

Nahmi from Melbourne

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Hi Kevin,

 

I have been away from the board & trying to catch up on what's happeneing!

I have been praying for you all week because I knew you would be having your MRI & Scans.

Please post an update when possible.

Stay Strong!

MaryBeth

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