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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dian in spokane's picture
Replies 7
Last reply 2/22/2013 - 5:04pm

So I finally have an appt with Seattle Cancer Care Alliance. I'll be seeing Dr. Thompson on Wednesday. It works out well since bob and I were planning on driving over on Thursday, so we'll be able to combine this trip instead of having to make two.

Because of my previous experience with second opinions, I expect them to agree with my own doctor. BUT, they do have several trials. One way or the other, I'll be able to pick his brain a little and decide what my main plan will be, and what my back up plan will be.

Got my hair all cut off too, so I'm all ..ready for the fight.

 

DIan

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HI Everyone,

Due to the time difference those of you on the west coast may want to meet later, I realize 7PM is early for you.  Several west coast people do come to chat later.  See you there.

Love and Light

Carole

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Bunmom's picture
Replies 15
Last reply 2/24/2013 - 11:40am

Hello everyone, 

I'm new here. I had a mole removed from my right forearm on Jan 29 and the path report showed Clark Level 4 malignant melanoma. However, it appeared that all was removed with the shave biopsy. I did go ahead and have a wide resection of my arm and sentinal node removal 2 weeks ago. 

I spoke the the surgeon at length, who said only ONE node took up the dye, and it was the same ONE node that measured on the Geiger counter, so he only removed the one. He said the node looked good. 

Got a call back with my path report Tuesday: After using 4 different stains, the pathologist found a 0.1mm spot in the sentinal node, which he called micrometastisis. I saw an oncologist yesterday, who referred me to Dr. Miner in San Francisco. I see him next week and also have a PET scan scheduled, as well as BRAF testing of my original mole.

The oncologist discussed a lot of options with me: various medications, interfueron therapy, clinical trials. He also mentioned further node removals versus radiation on my armpit. I'm a bit overwhelmed and emotionally drained. I want to be an advocate for myself but feel lost looking at all the options. 

Any words of encouragement or hope would be appreciated. I have 2 kids at home and feel like I've been given a death sentence. To make matters worse, a good friend died of triple negative breast cancer the day I received the news that my path report showed malignant melanoma. So I was under some emotional strain at the outset of this journey. This diagnosis has made it far, far worse. I need HOPE because I'm having trouble here! 

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Hi Everyone,

We have some answers today about my Dad. We're facing a pretty serious situation (brain, bone, lung, muscles, skin). We've opted for very agressive treatment in the form of Temozolomide, Cisplatin, and Vinblastine (CVT). Our goal is to shrink the crap out of this stuff and hold it at bay. Anyone else have experience with this treatment plan? He'll be on a 21 day cycle. This is crazy to me as he has very few symptoms, feels pretty good, and has been playing 18 holes of golf every few days up to today. My Dad is 67 y/o and in very good physical and mental shape. 

Any experience with this treatment would be much appreciated. I haven't been able to find much on the internet. Apparelty Temozolomide is pretty new?

Thanks,

Natasha

We can do this!

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bkinman's picture
Replies 7
Last reply 4/11/2013 - 5:44pm

How long before you started having side effects of Zelboraf?  I started 2 pills 2 times a day today and will work my way up to 4 pills twice a day.

 

Thanks

Becky

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Gene_S's picture
Replies 7
Last reply 2/22/2013 - 3:20pm
Replies by: JerryfromFauq, Anonymous, Tim--MRF, JakeinNY, susanr

 

Exposure to sun 'may help people with cancer survive'
 
Sunbathing warnings may have been too simplistic, say scientists
Sunbathing is known to cause skin cancer – but it may also help people survive when they get it, scientists are reporting.

Two studies published yesterday showed that vitamin D produced by the action of the sun on the skin may help improve survival for patients with skin and bowel cancer.

The bizarre finding suggests that health warnings to avoid the sun have been too simplistic. Some exposure to the sun is necessary for health – it is excessive exposure leading to burning of the skin that does the damage.

A research team from the University of Leeds working with the US National Institutes of Health found a high level of vitamin D – suggestive of high sun exposure – protected patients with malignant melanoma, the deadliest form of skin cancer.

Those with the lowest levels of the vitamin D in their blood at the time of diagnosis were 30 per cent more likely to suffer a recurrence of the disease after treatment than those who had the highest levels.

Patients with the highest levels of the vitamin also had the thinnest tumours at diagnosis. Results of the study, funded by Cancer Research UK and the NIH, are published in the Journal of the National Cancer Institute.

The findings add to the growing body of evidence that boosting levels of vitamin D could protect against a wide range of diseases, or extend survival with them. The gloomy weather and long winter in countries north of 30 degrees latitude, such as the UK, means that a large part of the earth's population is deficient in the vitamin between October and March. The weight of evidence has grown so dramatically that governments around the world are reviewing their recommendations on the minimum recommended limits.

Professor Julia Newton Bishop, of the Leeds Institute of Molecular Medicine, who led the melanoma study, said: "It is common for people to have low levels of vitamin D in many countries. Melanoma patients tend to avoid the sun as sunburn is known to increase the risk of the disease.

"Our results suggest that melanoma patients may need to get vitamin D by eating fatty fish or by taking supplements to ensure they have normal levels."

Professor Newton Bishop warned against excessive use of vitamin D supplements, however. "There is some evidence from other studies that high levels of vitamin D are also harmful. So we should aim for a normal level rather than a very high one."

In the second study, researchers led by Professor Kimmie Ng, from the Dana-Farber Cancer Institute in Boston, US, who followed more than 1,000 bowel cancer patients for nine years, found those with the highest level of vitamin D were half as likely to die from the disease compared with those with the lowest levels. The results are published in the British Journal of Cancer.

Sara Hiom, director of health information at Cancer Research UK, which funded the study, said: "The key is to get the right balance between the amount of time spent in the sun and the levels of vitamin D needed for good health.

"Protection from burning in the sun is still vital. People with lots of moles, red hair, fair skin and a family history of the disease should take extra care as they are more at risk."

Vitamin D: Man-made healer

Vitamin D is the only vitamin that humans make themselves and is essential for the health of skin and bones. It has attracted increasing attention in recent years as its role in preventing cancer and other conditions including heart disease, diabetes and multiple sclerosis, has been revealed. Some experts believe the benefits of the Mediterranean diet may have as much to do with sun as with the regional food. An increasing body of cancer and other medical experts say a healthy intake of vitamin D for people in the UK and northern Europe should be five to 10 times higher than the current recommended blood levels of 200 to 600 International Units a day, depending on age. Others have suggested high levels may not be protective, and could even be dangerous.

----------------------- -------------------------------------------------------------

article found at   http://www.independent.co.uk/life-style/health-and-families/health-news/exposure-to-sun-may-help-people-with-cancer-survive-1791166.html

Personal note:  Milk and dairy are very hard on a cancer patients system.  There are better choices for Vitamin D.

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

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chalknpens's picture
Replies 4
Last reply 3/1/2013 - 12:50pm

Hi - I'm doing fine myself, having had no new melanoma sites discovered at my three month and six month follow up visits. But I have a relative who has had melanoma for several years, beginniing about a decade ago. She now has lymphoma. And in our family, we have what is called a cancer gene, BRCA 2. That gene is linked to many types of cancer, and it raises the likelihood of developing cancer tremendously.

Is anyone else familiar with this gene? And have other people with melanoma later been diagnosed with lymphoma, and are the two cancers related? I've alerted my doctor to the family link to BRCA 2, and we are looking into genetic testing.

I am not perfect, but I am enough.

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Maereard's picture
Replies 4
Last reply 2/21/2013 - 3:28pm
Replies by: Maereard, Janner

Hello again everyone!
I have more questions as always:-) I had a crazy spot removed in August that was melanoma. My scar looks great and I have not had any bumps or things they told me to look for. That's my good news! I noticed a few nights ago that I have a spot that looks just as ugly and discolored as the first spot growing about four inches above my scar line. I am scheduled to see my dermatologist tomorrow. My questions is if it is melanoma then it would be a second primary, right? If I understand right then that is not as bad as it would be if it was the first one coming back??? So then would it change my stage? I am currently a stage 1 because my first one was only .25mm but if in fact this is another one does that increase my chances that it would be in my lymph nodes:-(? I did not have them biopsied in August since my primary was so small. As always any information you can give me I thank you for in advance;-)!
Beth

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Hello again everyone!
I have more questions as always:-) I had a crazy spot removed in August that was melanoma. My scar looks great and I have not had any bumps or things they told me to look for. That's my good news! I noticed a few nights ago that I have a spot that looks just as ugly and discolored as the first spot growing about four inches above my scar line. I am scheduled to see my dermatologist tomorrow. My questions is if it is melanoma then it would be a second primary, right? If I understand right then that is not as bad as it would be if it was the first one coming back??? So then would it change my stage? I am currently a stage 1 because my first one was only .25mm but if in fact this is another one does that increase my chances that it would be in my lymph nodes:-(? I did not have them biopsied in August since my primary was so small. As always any information you can give me I thank you for in advance;-)!
Beth

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POW's picture
Replies 7
Last reply 2/26/2013 - 9:13am

As I just posted on the Off-Topic Forum, I am about to travel from Atlanta to Tampa for what I expect to be a last visit with my brother. I would appreciate any advice or insight any of you may have about how to make the visit as pleasant and satisfying for him as possible. I don't mean to bum anybody out, but sometimes there are just no more treatment options. I would like to continue to do my very best by my brother as I have done since his original diagnosis-- including this stage of our journey. I would appreciate your help. 

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randallgford's picture
Replies 20
Last reply 3/28/2013 - 7:09am

We had our first onc appt since diagnosis of malignant lung mass. I really liked the Doctor

efficient, informative and great manner. I had a list of questions based on my research here on

the board and he addressed them all before I asked. Game Plan: Brain MRI and PET scan

Friday to see extent of disease. Will do BRAF analysis on tissue from lung biopsy. He is

planning: Zelboraf if BRAF positive; IPI if negative. Will assess response then consider potential

clinical trials at Sylvester Miami. Based on CT scan, he doubts 3.8,m lungmass is isolated so

isnt talking surgery as yet. He also trained with and knows the Dr. at Sylvester Center

Miami we used with first 2001 diagnosis (2b WLE with negative SNB). My husand is a very

calm person (I've always jokingly called him my Dalia Lama (sp?)) and has a positive attitude so

the oncologist said these people seem to respond well. When I asked best/worse case scenario, he

said "I can see you've done your homework so you know the stats- but forget them because he is

an individual and the only stat I need to think of is his - and it is unknown. I really liked that answer.

I now have hope and a more positive attitude. 

Vicki, his wife

Never give up!

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Anonymous's picture
Replies 2
Last reply 2/21/2013 - 12:57pm
Replies by: rdd, Janner

A 20 year old loved one very recently got a dark mole and a tiny one the size of a pin right next to it removed from his finger.  The Pathologist Comments are as follows:

There are nested melanocytes at the junction with focal bridging between rete.  Scattered single cells are at the junction and in the mid-epidermis.  Rare melanocytes are in the granular layer.  Junctional melanocytes have enlarged epithelioid nuclei and coarsely pigmented cytoplasm.  One mitosis seen.  Melanophages surround the dermal vessels.  These features are in keeping with a junctional nevus with atypical features on acral skin.  It extends to a peripheral biopsy edge.  Complete excision is recommended.

The specimen was an irregular portion of tan skin measuring 0.7 x 0.4 x 0.1 cm, margins painted blue.  

Can someone please tell me what all this means.  We are very worried.  The nurse (not the doctor) called us and told us it was just an atypical mole they want to remove fully.  When we had gone to see the dermatologist he didn't want to remove it but we asked for it to be removed as it just didn't look right to us and now we have this pathology report.  

Does this type of diagnosis mean this person is more susceptible to melanoma?  Should we get his other moles checked.  We are a moley family.  How are we going to ensure they get all of it when they excise it.   Please help us understand.  I have been trying to research as much as I can for the last 2 days since we got the report.  Thank you and god bless everyone.  

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DeniseK's picture
Replies 5
Last reply 2/21/2013 - 5:22pm
Replies by: JakeinNY, Owl, Brendan, POW, bikerwife

Hello Everyone,

I got the report back from my Brain MRI that I had done last Friday.  

It says it's decreased from 2.3cm to 8mm, decreased associated T2 hyperintensity and no new mass or abnormal enhancement.

So the MRI looks good.  Not sure if it's from the WBR or Zelboraf, I'm meeting with the Radiologist Onc tomorrow so I supposed he'll be able to tell me.

The PET Scan results aren't in yet but I'm getting pretty good at seeing the spots that light up.  As I suspected I'm lighting up on my right side either my stomache or gallbladder.  I've been having pain under my right ribs so I suspected something was going on.  The previous tumors have shrunk significantly but not sure how much until the report comes back.  I'm not having any bad side effects except my ears hurt from the WBR and they still haven't popped.  I'm also having severe nausea.  Having trouble eating and keeping it down.  Seems like I"m constantly nauseated, I'm wondering if it's from the WBR or the Z or the gallbladder/stomache tumor??  

Has anyone else had gallbladder tumor and what were your symptoms?  Did you have surgery?  

Thanks

Denise

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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Carole K's picture
Replies 2
Last reply 2/21/2013 - 6:26pm
Replies by: Carole K, BarbieGirl

HI Everyone,

I will be in chat and hopeftully others as well,.  Come join us.

Love and lIght

Carole

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thrashter's picture
Replies 2
Last reply 2/20/2013 - 7:33pm
Replies by: thrashter, jag

Have to decide tonight on 4th round. Have (2) un resectable tumors near clavicle and vein. Tumors have not shrunk but have not grown. PET activity has lowered but not gone away. No direct evidence of 4th round extending overall life expectancy. Struggling with decision. Talked to surgeon he is debating doing exploratory surgery to look at where tumors are to see if he can get to them without nicking vein or nerve. Looking to see if any one has had similar experiance and what they did. Thanks

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