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

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Replies by: natasha

Vitamin D Levels May Be Vital For Patients Who Suffer From Some Forms Of Leukemia

Easy Health Options Staff | Nov 05, 2010 | Comments 173

There are more than 259,000 people living in the U.S. who have leukemia or are in remission, according to the Centers for Disease Control and Prevention. Now, researchers have discovered a link between chronic lymphocytic leukemia and vitamin D.

The most recent study adds to previous evidence that vitamin D deficiency is a risk factor for the progression of several cancers, including colorectal, melanoma, lung and breast cancer. Low levels of this vitamin may lead to poorer outcomes.

For the new research, scientists from the Mayo Clinic discovered that cancer also progressed much faster in chronic lymphocytic leukemia patients who had insufficient vitamin D levels. These individuals were nearly twice as likely to die compared to patients who had adequate amounts of the nutrient.

The investigators also found that when vitamin D levels were increased, it led patients to a longer survival time.

Lead researcher Tait Shanafelt said that "between one-fourth and one-half of patients seen in routine clinical practice have vitamin D levels below the optimal range." He added that that there may be up to 1 billion people worldwide who have insufficient amounts of vitamin D.

Individuals with leukemia increase their vitamin D levels by consuming more tuna, salmon, eggs or mushrooms.

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http://www.easyhealthoptions.com/cancer-concerns/800221213/

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The best way to increase your vitamin D-3 is to spend 15 minutes a day in the sun between 10am and 2pm.

Everyone reading this posting should get their vitamin D-3 levels checked.

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

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Richard_K's picture
Replies 6
Last reply 5/10/2012 - 1:44pm

Got results from Monday's scans.  Everything is stable with no change in what is probably dead or scar tissue.  Another set of scans in six weeks.

Dick

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LindyVA's picture
Replies 1
Last reply 5/10/2012 - 3:19pm
Replies by: Gene_S

My husband had four infusions of 5mg of Yervoy Dec 2011 and Jan 2012. His scans in March showed tumors in brain, lungs, pancreas were either gone or inactive. His also has had gamma knife twice in past 8 months which may have contributed to shrinking of bain nets. His doctor was very excited and said he believed my husband was a very positive responder.

He has developed a large tumor on one lower leg in an area where he had wounds in the past. His onc.  is concidering re-introduction. My husband  is the only patient on yervoy and has relied on me to keep him updated him and current on yervoy from my research. When I asked why not maintenance rather than a full introduction which might be less destructive on a 72 year old man which heart problems, the doctor stated he was not familiar with maintenance. I have seen several posts about this and wondered how others have done on maintenance vs a complete re-introduction.

It is less than six months from starting the yervoy and considering the onc said he was a good responder I wonder if the yervoy may still be working and maintenance would be less aggressive.

Any thoughts......

Thanking you in advance for your input....

 

Linda

 

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Just a quick note to let everyone know that we now have a small Caregiver Support Guide available online and also as a hard copy.  I would like to take this time to thank all of the MPIP community members who volunteered their thoughts and feelings as we wrote this piece.  Your thoughts and feedback were extremely helpful!

Shelby - MRF

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natasha's picture
Replies 1
Last reply 5/9/2012 - 8:33am
Replies by: lhaley

Did someone have the same?

I had my WLE more about 2 monhts ago and everything healed escellent!!

For last week I had light pain  in the scar area.Probably it can be down to my period?

really don't know and afraid of reccuriance :(

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Lauri England's picture
Replies 5
Last reply 5/10/2012 - 2:38am
Replies by: deardad, aldakota22, natasha

I was scheduled for scans last Friday, but I ended up having it done on Thursday at the ER.  I had a headache that started the Sunday before and had it all week.  Not a normal headache, but like a migrain.  I went to my family DR Wednedsay and she put me on Predisone and said it should help within 24 hours and if not go to the ER.  Well it didn't help so Thursday I went in.  They did an emergency CT scan of my brain and then the rest of my body.   They told me there was nothing that showed up on the scan at all anywhere.  What a relief.  Still not sure why the headachs.  They gave me vicodin for the pain and motrin.  These have been helping of course.  I have not had a headache since last Saturday.  I have an appt with Onc this Friday.  Even though I got the results of the CT already I still wanted to keep the appointment because this is the doctor that will be scheduling my furture scans.  If all stays good I want to go back to work in the next couple months and maybe try to live a normal life once again if possible. 

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

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Hope Returning's picture
Replies 1
Last reply 5/9/2012 - 9:35am
Replies by: palmspringswalt

Does anyone know how Dr. O'Day is doing? Why he disappeared and is he now back to himself or different? He was an asset to the life of many  melanoma patients

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Sharon's picture
Replies 3
Last reply 5/10/2012 - 12:36pm

My Husbands scans show that the turmor is GONE! We thank the Lord for answered prayers.  What he is dealing with now is not being able to make his own steriod after being on steriods on and off during treatment.  He is taking 15MG Hydrocortisone hoping his own steriods will kick in.  He is getting along ok just not the strength and energy he would like to have. We now see an Endocrinologist who is helping him deal with not making steroid. 

We are so thankful to many of you who post to this sight it has helped us along the way to understand Melanoma and the many treatments. We pray you too will have complete healing!  Sharon

God, Family, Friends and Dogs ~ it's all that really matters!

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Lisa13's picture
Replies 1
Last reply 5/8/2012 - 9:07pm
Replies by: lhaley

Hi. Linda,

it looks like I have to the steroids, but i'm really try to not take the. The most problem I have is a weak hand and a small amount of forgetting words. I had a gamma knife 2 weeks ago and told me the huge one I have hasn't moved for 13 days. If it continues to stop moving or it can shrink, can be amazing!

Do you know when blood disappears so that they know if there is tumour? Is it 2 weeks or months that the blood would disappears. Do you think I should be taking the steroid? They told me to start at 4mg.

Thanks Linda. I hope you're doing okay.

Lisa

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

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Anonymous's picture
Replies 4
Last reply 5/9/2012 - 9:39pm
Replies by: Bubbles, Anonymous, rbruce

Anyone on anti-pd1 trial have a problem with their thyroid, high liver panel numbers, eyes or other organs??? Any side effects such a rash, joint pain, etc? Thanks for your comments

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Anonymous's picture
Anonymous
Replies 1
Last reply 5/8/2012 - 5:35pm
Replies by: natasha

I have been a lurker here.  I am newly diagnosed with a stage 0 melanoma.  Is this considered a cancer?  I was given a information packet from National Cancer Institute today after my wider excising.  It says that, and I quote:: In stage 0 abnormal melanocytes are found in the epidermis.  These abnormal melanocytes may become cancer and spread into nearby normal tissue.  

DOES THIS MEAN THAT IT IS NOT CANCER?  WHY DOES IT SAY MAY BECOME CANCER?  I WAS TOLD IT WAS CANCER. 

Is this a big deal, something I should be telling my parents, or not worthy of the worry it may cause?

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Lisa13's picture
Replies 3
Last reply 5/9/2012 - 1:10am

2 weeks ago, I found out the brain met from last november was starting to grow, but they didn't know if was blood or met. So I decided to go to Florida and had a great time with my family. I also found out the brain hadn't grown for 13 days, so in 2 weeks, I'll know everything. This could be good things from ipi, which i'll find out everything on Friday.

I've never taken a steroid and still have high lymphocyte, so I don't want to effect the immune system. However, I'll have to take them as I'm experiencing things like a weak hand. I used to have other problems, but no longer have then. Does the steroid really make you feel better?

Lisa

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

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NYKaren's picture
Replies 5
Last reply 5/9/2012 - 5:10pm

Hi everyone,

I haven't been on here for a while...it feels good to post again.

Before my 3rd infusion on April 19, the only side effect I was having was some diarrhea, for which I was given Endocort EC, and I was actually kind of wishing for more (last time I had a bad rash too)...well be careful what you wish for!

A day or two after that, I developed diarrhea, really badly.  The Endocort was no longer controlling it, so Dr. W. put me on  Prednisone..  Of course I wasn't happy about that, but what the heck, we would just get me stable and taper me off.

Then the following week, I was having bad diarrhea again and I was doubled over in pain.  They had me go to the Urgent Care at Sloan (their version of  the ER).  Two doses of Dilaudid helped for about 15 min after each dose, although I had stopped going by then.  Dr. W. came and ordered a CT scan; he said that it looked better than he expected and dx'd mild colitis.  He did say, "Karen, we wanted an immune response, and you definately got one!" Then they pumped me full of more steroids, and blessed relief.  It was like magic.   

In the hospital he said he didn't know if I could get the 4th infusion, but since then I've been weaning off the pred., down to 40 mg/day with the intention of being off in a couple of weeks.  G-d willing, I'm scheduled for my 4th infusion on May 24th.  Even if I couldn't get it by then, it can be stretched out more, even more, apparently than the 16 weeks that is in the protocol.   I don't know how anyone willingly takes steroids.  I have big chills, neuropathy in my feet and horrible GERD.  My gastro prescribed Omeprazole, which did nothing, but Nexium is working well.  I think my case is somewhat complicated by the fact that I had a gastric by-pass about 6 years ago.  I find myself unable to eat most foods, and for the first time in my life, dairy is a big trigger (even lo fat cottege cheese, etc.)  I'm only able to eat poached eggs w/white toast, chicken in soup, and turkey slices.  I've lost weight and any steroid-induced energy is gone (although who knows how I'd feel without them...maybe much more fatigue.) 

The good news is that the mets have stopped spreading.  I go to the onc derm every 2 weeks and he freezes what's left on my scalp/face/neck and in my ear.  (sorry this is still bold, I can't get it off.)  Then I apply Aldera to everywhere he's frozen.  The most stubborn spot is in the ear canal, because he can't spray directly in but has to put gauze in and spray that. Aggressively!  I take Oxycodone 1/2 hour before he starts and I still almost fall off the table.  But I couldn't care less about the pain.  Even the ear is getting better with this system.  Also, we left one spot untreated so that if it gets larger, it would be the measurable disease required for Anti PD-1 trials.  Yesterday when I went, I felt that it had flattened a bit, he wasn't sure, so he photographed it against a ruler.  (should have done it last time, but nobody's perfect.)  Also, I have white hairs growing in my tweezed eyebrow and chin hair, which Dr. W. said is a great sign.  So, I am cautiously optimistic.

I think that's about it...sorry this is so long, but there's so much unknown about Yervoy, I wanted to provide as much info as possible.

Take care my friends,

karen

Don't Stop Believing

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justlittleoleme's picture
Replies 3
Last reply 5/9/2012 - 7:30am

Liver function is getting better.  He has now developed hemolysis in addition to diabetes.  The darned steroid is kicking his butt.  They have now pulled Temodar off the table.

So frustrating.  The steroid has caused loss of strength so it makes it very difficult for him to do the stairs.  Imagine, a 41 year old man who was recently training for his black belt and he can now barely do a flight of stairs.  He has lost all of his toning and conditioning. 

We know his time is limited so we are trying to make the most of every day we have been given.

We don't know how strong we are until being strong is the only choice we have.

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