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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My husband (stage 3B) is set to begin interferon therapy next Monday.  It will be the standard course of treatment, with daily infusions five times per week for the first month.  We have a prep appointment this week so we can ask questions then.  I need to have an idea, for example, how long the actual appointments tend to last so I can work on logistics.  But I'm also interested in hearing from people here who as to whether you think there's anything he can/should do now to prepare ~ aside from take a few last, long rides since his bike won't be on the road for a bit. ;-)

Thank you,


Keep on keeping on.

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Outrun the Sun is an outstanding organization in Indianapolis, IN.  They are hosting a forum next week. I am posting the details for anyone interested in attending.

2012 Outrun the Sun National Melanoma Research and Education Forum
Thursday, October 18
Indianapolis, Indiana
Please join the Outrun the Sun, Inc. board of directors, research and education partners
and special guests for an informative overview of progress occurring in the world of melanoma research and skin cancer education.
5:30 pm: Hors d'oeuvres Reception; 6:30 pm:Program
Indiana University Health Fairbanks Hall
Featured Speakers
  • Douglas Schwartzentruber, M.D., FACS, System Medical Director of Cancer Services, Indiana University Health; Named by Time Magazine to Time's 100 Most Influential People in the World in 2010, Dr. Schwartzentruber will provide opening remarks.
  • Tsing Cheng, Ph.D., New York University, 2011 Outrun the Sun, Inc. National Melanoma Research Scholar
  • Omar Ali, Ph.D., Wyss Institute for Biologically Inspired Engineering, Harvard Institutes of Medicine, 2011 Outrun the Sun, Inc. National Melanoma Research Scholar
  • Anand Ganesan, M.D., Ph.D., University of California-Irvine; Dr. Ganesan is a 2010 Outrun the Sun Melanoma Research Scholar. He will join via teleconference to discuss his recent research discovery that involves identifying a cause of chemotherapy resistance in melanoma.
  • Lawrence Mark, M.D., Ph.D., Assistant Professor of Dermatology, Indiana University School of Medicine (IUSM), will provide an update on the enhanced dermatological curriculum for all IUSM students and the support of OTS.
  • Anne Dowden, Founding Board Member, Rochester Melanoma Action Group, Rochester, New York; First licensee of the Outrun the Sun Race Against Melanoma
Please RSVP by October 1
to Mary Beth Dedman;; 317-253-2121
Directions to Fairbanks Hall:
Convenient free parking is located in the surface lot east of the building.
Outrun the Sun thanks Indiana University Health and Dermatology, Inc. for support of this event.

Looks like this will be a great event. 


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Tina D's picture
Replies 4
Last reply 10/23/2012 - 8:10am

After my "side effect" symptoms seemed to be getting increasingly less tolerable, I was put on a 1 week break from Z. During that time, it became obvious I was having gallbladder issues, and subsequently had my gb removed. Needed recovery time and was then given another 2 weeks off. After a total of nearly 4 weeks, I restarted Z last monday evening. So far, I have had minimal side effects. Rash that has not progressed, Chicken skin (as someone on here calls it), minor joint achiness and a tiny bit of fatigue, and I have a few of those painful red nodules.I was pretty intimidated to be going back on after such a long break because of the difficult time I had been having with the side effects. No N/V thus far... wondering if perhaps it was the gallbladder issue causing me to be nauseated nearly constantly and throwing up or dry-heaves most days? I know I am only a week in, but so far I am very thankful to be feeling so well!! Enjoyed a weekend away with the family before starting back up smiley.

Just thought I'd post an update...

Tina hair had just started growing back due to the long break, so I will have to see if what little I have begins to fall out again! Also, food is tasting normal again with the long break! At any rate, it was over-all a nice break, even with the surgery.

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Ronskidtexx's picture
Replies 7
Last reply 10/9/2012 - 9:24pm

My second quarterly scans came back this week. After being told I may have a year to live 8 months ago, I continue to be NED! I had a radical neck dissection, with 57 lymph nodes taken (clear) as well as a tumor in soft mass of rib area. The tumor taken out of my neck was over 1 Pound in weight. Radiation to neck (5 sessions) was my follow up treatment. Am currently on no meds.

The power of prayer works. I will never give up.

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sharmon's picture
Replies 4
Last reply 10/9/2012 - 11:13am
Replies by: Napa K, awillett1991, lhaley

Not sure where to start,  Brent has been doing fine on  GSK MEk and Alimta trial.  Almost 32 months.  Two months ago he had pain in his kidneys and last week after the scan to that area the urologist  announced that the 2 stones seen on the scans could not be causing his pain.  So he orderd another  test and it is showing a dark spot in his spine.  We got a copy of the films to take with us  to Houston next week and we can clearly see the area.  Also some spots near the ribs of the  pain area.

We see the  local doctor on Tuesday.  We are devastated and the waiting for the radiologist report is the hardest thing ever.  He is in alot of discomfort and is saying we need to know what it is so we can get on with treatment, the pain is unbearable.

Somethimes you think you are sailing along and Wham! out of the blue.  Brent will be 65 on Monday and is in good health otherwise.  I am now looking on the internet for treatment options again, and I don't see any Anti-PD-1 trials open.  He will probably be dropped the the GSK trial for progression. 

I read here everyday and see a lot of hope coming from many who are survivors,  I need some of that hope right now sent my way. 

Prayers of all of you,

Sharon and Brent


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kellygrl's picture
Replies 14
Last reply 10/29/2012 - 7:51pm

Just wanted to share my husbands story.......   Aug 09 he had melanoma on his back, wide excision & sentinel node biopsy which came back negative for malignancy. So, in the clear until Mar '12, headaches which we contributed to stress due to his Air Force retirement, we moved, both started new jobs and bought a new house! NO STRESS THERE!!!  Then the start of the 3rd wk of these headaches, he threw up on Mon....  so got him to the doctor that day, MRI Thurs 3/22, then in the hospital about an hr later after our family practice doctor came to our home to tell us the devastating news that he had about 13 brain tumors. We got him to the hospital so he could be put on I.V. steroids, within 24 hrs he was back to his old self, had other scans & everything was clear.  

He then had a biopsy to determine if he had the BRAF mutation for Zelboraf...  yeyyy!!! He did, but before that, we gave WBR a shot...  18 treatments, melanoma fought back...  :( DEVASTATED!!!!!  Radiation did make him feel like crap after the 3rd week or so, but now we also think that may have been because the melanoma grew. :/ Other then that, no side effctes from WBR. Anyway, started max dose Z first week of June, severe sun sensitivity first few wks, few new skin tags that have fallen off, very minimal side effects & MRI 6wks later....  REDUCTION in ALL  tumors! Then labs for his liver were extremely high, off Z for a few wks, labs normal and on lower dose )3 pills twice a day...   even fewer side effects & next MRI  more reduction in the now only 11 tumors! 

My husband has been on Z for 4 mos, hair is coming back, feels great, looks great...  people just meeting him thinks he's in remission!  He's been back to work full-time since July 9th, takes a nap when he gets home, but who wouldn't want to do that.  :) He's been back to yardwork, helping with the house, etc..

 Now, I always wonder what kind of health people are in who are doing well, not so well, etc.....   my husband is 41, non-smoker, worked out atleast 5 days a week,  excellent health, we had always had a pretty good diet, but ate junk food here and there & of course the occasional cocktail... ;)   but since all of this, he has not had an ounce of alcohol, no soda, almost no sugar & hasn't had any fast food. We do not eat 100% healthy ,I try to stick the the basic cancer fighting foods.  We mostly eat salads with dark leafy greens & he LOVES tomatoes, antioxidant smoothies (berries, flaxseed), try to load him with lean protein and he's loving cottage cheese. We don't do a raw diet and we still eat meat, but it's not very often & he drinks a ton of water.   

We know people can build a resistance to Z, we'll cross that bridge IF we come to it, but for now we are just living life and enjoying it!! He feels great and we are running with it! So to all of you wondering about the brain mets....   for us it IS WORKING!!!!!  Hang in there, keep strong, BE POSITIVE!!

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himynameiskevin's picture
Replies 23
Last reply 10/11/2012 - 9:49pm

hi everyone this is Brenda, Kevin's wife.

i just wanted to let you all know that Kevin went HOME with the angels this past Sunday. I dont have much to say other than it was a beautiful moment. When we first got the news that his brain mets had began to bleed and there was nothing left to do, i told him that he couldnt go HOME with out letting me know, i wanted to be there holding his hand. So around 11:45pm on saturday i started to fall asleep and was awoken aroung midnight by Kevin trying to say something. I opened my eyes and he was facing me with his eyes slightly open, he was no longer breathing but his heart was still beating, and i knew, he was waking me up to say goodbye. I held his hand, told him i loved him and how proud i was of him, and thanked him for letting me share this moment with him. 

Through out this journey with him i was terrified of the thought of losing him, but when the time came, i couldnt help but look at it as a gift. We're not religious people, but i do believe with all my heart that we come to this world to experience, and when we're done we go HOME. And the fact that he is no longer sick, or stressing about scans, or dealing with treatments is the only thing that keeps me going. 

That makes Kevin a winner in my book, he handled this battle with gace and finess, and its not about beating the cancer, its about not letting the cancer beat you, and Kevin stayed strong until the end.

I know most of you didnt get to know Kevin as a healthy person, but i hope his attitude through out this will inspire you, and if theres anything to remember Kevin by, is his integrity, compassion, kindess and patience.

Kevin wore a pendant around his neck that read "never be lost", and i hold on to that pendant when ever i start to miss him, i wish i had a pendant for each and everyone of you to remind you that no matter how hopeless you might feel, you are never lost or alone, because Kevin's spirit will always be there holdong your hand.

i love you all, and so does Kevin.

love and healing

<3 Brenda, Kevin's wife.

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Rik's picture
Replies 12
Last reply 10/10/2012 - 9:35am
Replies by: Rik, POW, lhaley, kellygrl

Dear all,

Four years ago a melanoma was found on the back of my brother. Fortunately, they can be surgically remove and no metastases were found.

My brother is now 31 years old and father of a beautiful daughter of one year.

Unfortunately, in April of this year, they found a metastasis. This time in his head. Fortunately, they could again surgically remove the tumor. The tumor was located on the outside of his brains. Again there were no metastases found after the scans. 

Unfortunately, it ran all wrong from than. My brother showed a bacterial infection to have walked in the operation; meningitis. He went into a coma by the meningitis. Fortunately he awoke, but he had some damages in his brains and physical he was bad at that moment too. He had to rehabilitate. He was working on that for the last two months in the rehabilitioncentre. 

The result of a routine MRI came last Friday, this revealed that again metastases were found in his head, this time at 3 places. We all did not expected this. This week we had many conversations in the hospital, they can not surgically remove the tumor because they are in the brains. Radiation is dangerous and not recommended by the neurologist. The last remaining option is medication, Zelboraf. The hospital, here in the Netherlands, is not very keen on it. They indicate that the probability that Zelboraf works on brain tumors is 40 percent and find the side for my brother too dangerous. Zelboraf in the Netherlands is only recently officially approved drug, but data regarding Zelboraf and the effect on brain tumors is very limited the oncologist told us. We are now busy deepen what Zelboraf can do for my brother and whether this without many nasty side effects. If Zelboraf can extend my brothers life with months (they diagnosed him to life for 6 - 9 months) this would be so beautiful. His daughter is 1 year old, and every month they can life together (in a reasonable way) together is so important for all of us.

Please let me know if anyone has experience with Zelboraf with a brain tumor and what the effects have been. My brother is indeed in a bad condition by the complications of the previous operation. We want to exclude that Zelboraf damages his life even more, without the chance that Zelboraf works for him is very large.

Thanks in advance! All comments are welcome. This is so important for my brother! 

Kind regards,

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H555's picture
Replies 6
Last reply 10/7/2012 - 9:51am

I got the call from my oncologists medical assistant today. Actual appt with the dr is next Wednesday. I've been om Zelboraf since April 8. A week earlier my radiation oncologist told us I wouldn't last 2 summers without something like zelboraf. Thank God I have th BRAF mutation. I had an amazing response in th first 8 weeks, 90% of th mets in my lungs were either resolved or significantly smaller and the collapsed lobe on the left lung was reinflating. The next bi-monthly scan showed continued good response and today she said my scans were even further improved. I,am feeling very very fortunate.

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Latest News

Australian researchers help show two-drug melanoma combination helps slow cancer in study
3rd October 2012

Australian researchers at Melanoma Institute Australia and Westmead Hospital in Sydney have published the results of a study that shows a combination of two experimental melanoma drugs helped slow the cancer’s progress longer than a single-drug treatment.

Patients taking the new melanoma drugs dabrafenib and trametinib together delayed tumors from progressing for 9.4 months, compared with 5.8 months for patients taking dabrafenib alone, according to the study of 162 patients. The trial was part of the second of three phases of studies by researchers in Australia, the US and Europe.

Dabrafenib works by blocking BRAF, a mutant gene that spurs cancer-cell growth in about half of melanoma patients, while at the same time, trametinib thwarts a related protein called MEK, which helps tumours resist an attack on BRAF.

The study, funded by the pharmaceutical company GSK, was presented at the European Society for Medical Oncology meeting in Vienna over the weekend by Dr Georgina Long from Melanoma Institute Australia, Westmead Hospital and The University of Sydney, and simultaneously published in the New England Journal of Medicine.

The phase I and II trials focused on combining two drugs to delay the resistance to BRAF inhibition. The study tested two doses of trametinib. The combination of drugs prolonged progression-free survival over single-drug therapy from 5.8 months to 9.4 months, which represented a 60% improvement. Among patients who received both drugs at the higher dose, 41 percent had not progressed 12 months after treatment began, compared with 9 percent in the single-drug arm of the study.

Patients taking the two medicines together had lower incidence side effects including rash and skin lesions, often associated with single agent dabrafenib.

Adding the MEK drug may reduce a side effect of BRAF drugs, the development of non-melanoma skin cancer, while possibly boosting efficacy, according to Dr Georgina Long, a study leader and oncologist with Melanoma Institute Australia and Westmead Hospital in Sydney.

Dr Long said, “Understanding melanoma and its mutations helps highlight more deadly weaknesses of the cancer, which we can exploit using new drugs and drug combinations.”

“We know that resistance emerges within 5-6 months of treating patients with single-agent selective BRAF inhibitor. We also know that most of the resistance mechanisms identified so far result in re-activation of the pathway that the BRAF inhibitor initially blocked (MAP kinase pathway). This was the basis of the rationale to trial the addition of a MEK inhibitor. It blocks the same pathway, but lower down, and we hoped that by combining both drugs we would see a significant delay in the emergence resistance that would impact patients lives.”

“The combination therapy of the BRAF inhibitor dabrafenib and the MEK inhibitor trametinib prolongs the progression-free survival in patients with V600 BRAF mutation-positive metastatic melanoma compared with dabrafenib monotherapy. Importantly, the combination also decreases the rate of the cutaneous toxicities compared with dabrafenib monotherapy, particularly the oncogenic cutaneous toxicity of squamous cell carcinoma,” Dr Long said.

Download press release

this is the website

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bron's picture
Replies 1
Last reply 10/5/2012 - 3:55am
Replies by: bron

i have been thinking about this survey  as i have yet to do it....... maybe i am crazy but the article states   ..

The current cost of ipilimumab or yervoy in Australia is $120,000.

To put that in perspective the average suburban house in Brisbane costs 330,000 to 400,000.( It take two wages and 30 years to pay off.)

Ruling out that only wealthy people in Australia get melanoma then the average person would have had no access to this drug.

 I read this as .........  Very few people in Australia can answer this questionnaire .my da 


Would it be rude of me to ask any people on this website that have used this drug to click on the link and make their comments as to any

positive results from use of the drug ipilimumab (or yervoy). The actual form that you see when you click on the link is very basic.


It may help many , many people in Australia......


Thank you and hoping some may help....

very kind regards from bron



Medicine Information.
Dear MPA Member

We need your voice to ensure patients with advanced melanoma have access to affordable treatments. Please provide a comment on new PBAC submissions.

What is the Pharmaceutical Benefits Scheme (PBS)?
The Pharmaceutical Benefits Scheme (PBS) subsidises the cost of certain medicines, therefore ensuring they remain affordable.

Who decides which medicines are listed on the PBS?
The Australian Government is responsible for deciding which medicines are on the PBS, however their decision is mostly based on advice from the Pharmaceutical Benefits Advisory Committee (PBAC).

The PBAC is an independent body of experts that reviews and make recommendations to Government about newly submitted medicines.

The PBAC meets 3 times a year and its next meeting is in November 2012.

Why is this important for melanoma patients?

Although melanoma is easy to cure in its early stages, there is yet to be a drug developed that will successfully treat melanoma in its advanced stages.

In these cases, only a handful of drugs are available, and they have limited application and suitability for each individual patient.

The first new drug up for PBS recommendation is Ipilimumab or “Yervoy”. This drug contains the active substance ipilimumab, a protein which helps your immune system to attack and destroy cancer cells..

The PBAC has considered Ipilimumab twice before, and on both occasions the PBAC requested more information.

If not subsidized under the PBS, the cost for an Australian patient with advanced melanoma seeking treatment with Yervoy is approximately $120,000. Most patients will not be able to afford this in the final stages of their battle with melanoma.

How can you help?

Before the PBAC makes recommendations, it has a two week period where it considers comments from the public. This period starts from the 26 September until 10 October.

We encourage all melanoma patients, carers, family members, healthcare professionals and advocacy groups to write to the PBAC and provide the panel members with personal stories on current treatment options, and the personal impact of melanoma on life.

What kind of comments would be helpful for the PBAC?
The PBAC asks you to consider 5 questions, however you don’t have to answer all of the questions.

1. What treatment (if any) are you using now?

Guiding questions for patients:
- please describe past and current treatment(s) you have accessed?

2. What do you see as the benefits of this new medicine for you?

Guiding questions for patients:
- Have you accessed Ipilimumab? What benefits did you experience?
- If you have not accessed Ipilimumab before, explain why access to Ipilimumab could be beneficial to you?

3. How will your life and that of your family and carers be improved by this new medicine?

Guiding questions for patients:
- Describe how your life and that of your family and carers be improved by this new medicine?

Guiding questions for family and friends:
- Please describe who you are commenting on (i.e. yourself, partner, family member or friend)?
- Describe how the life of the patient and that of other family members and/or carer can be improved by this new medicine?

4. What other benefits can you see from having this new medicine on the PBS?

Guiding questions for patients:
- Without subsidy, could you currently afford it?
- If not, what other options do you have to purchase Ipilimumab?

Guiding questions for family and friends
- Please describe who you are commenting on (i.e. yourself, partner, family member or friend)?
- Why would you like to see the patient have access to Ipilimumab?
- Without subsidy, could you currently afford it?
- If not, what other options do you have to purchase Ipilimumab?

5: Do you have any comments on the consumer input process?

Guiding questions for patients, carers, family and friends:
- Do you believe the two week commenting period is sufficient?
- Do you believe that the questions asked during the consumer input process are appropriate? If so, why? If not, why not?

How to submit comments for the PBAC’s November meeting

Your comments can be submitted from 26 September until 10 October. There are three ways to do so:
1. Online at the Department of Health & Ageing website by clicking here or type this address in your web browser:
2. Call (02) 6289 8592 to request a form and send the completed form to the Department of Health & Ageing before 10 October
3. Write a letter of support and send it to PBAC, GPO Box 9848, Canberra, ACT 2601 before 10 October.

The PBAC will consider all comments submitted by 10 October.

MPA will send the outcome of the PBAC meeting to all members six weeks after the November meeting.
You can get more information by clicking here or you can type this address into your web browser:

Need further information or support?
Please contact Melanoma Patients Australia on 1300 88 44 50.

1 For patients with unresectable or metastatic melanoma who have failed or are intolerant to prior therapy. For more information about ipilimumab, refer to the Consumer Medicine Information. Medicine Information.

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simone's picture
Replies 3
Last reply 10/9/2012 - 7:38pm
Replies by: simone, Swanee, Janner

Hi and sorry... I really hate to take the time from all of you with much more serious issues right now.  That said, I'll try to keep it brief and thank you in advance for any feedback.

In the last 2 yrs since my diagnosis with Melanoma (1B), I have had 1 or more basal cells diagnosed after every visit (every 4 months).  I've been using the Plastic Surgeon that my group  recommended but now wonder if I should be using the Mohs surgeon for these?  My basal cells are all on my face or chest and I imagine I'll be running out of skin soon if I keep using the Plastic Surgeon b/c it's usually 10 stiches per basal.  I am asking now becasue at the rate I'm going (and at the rate my family members develop basal cells), I thought I should come up with an educated plan.  My Mel Specialist does not like the topical chemo (sorry do not have name) because it makes it hard for her to track.

Any thoughts?  Once again, sorry to ask such a trivial question but I didn't kow who else to ask.  Thank you very much.


By the way... Celebrating 2 years NED this weekend!  :)

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Hi and sorry... I really hate to take the time from all of you with much more serious issues right now.  That said, I'll try to keep it brief and thank you in advance for any feedback.

In the last 2 yrs since my diagnosis with Melanoma (1B), I have had 1 or more basal cells diagnosed after every visit (every 4 months).  I've been using the Plastic Surgeon that my group  recommended but now wonder if I should be using the Mohs surgeon for these?  My basal cells are all on my face or chest and I imagine I'll be running out of skin soon if I keep using the Plastic Surgeon b/c it's usually 10 stiches per basal.  I am asking now becasue at the rate I'm going (and at the rate my family members develop basal cells), I thought I should come up with an educated plan.  My Mel Specialist does not like the topical chemo (sorry do not have name) because it makes it hard for her to track.

Any thoughts?  Once again, sorry to ask such a trivial question but I didn't kow who else to ask.  Thank you very much.


By the way... Celebrating 2 years NED this weekend!  :)

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Anonymous's picture
Replies 3
Last reply 10/6/2012 - 9:00am
Replies by: Phil S, Anonymous, Swanee

I did a quick search and found this heartfelt entry posted on line ( 


Many of you know my only nephew Kevin Kagel has...
Posted: Oct 01, 2012 (09:51:13 PM) | Updated: Oct 02, 2012 (06:59:45 PM)

Many of you know my only nephew Kevin Kagel has been battling melanoma for two years. Sadly, Kevin, who was only 28, died over the weekend. During those two years, he researched and tried every treatment made available to him, endured side effects and setbacks, and yet remained strong, positive and thankful for anything the medical community could do to give him more time. We have a small family and Kevin was like a son to Dennis and me. He was our son Mike's and daughter Laurie's only cousin so this is a devastating loss for our family. Yet we are thankful for the time we had with this truly amazing person who was talented, kind, caring, compassionate and had a wonderful sense of humor. We treasure the memories of times spent with him including the annual beach vacations, holidays, birthdays and more. We know the impact he had on the lives of others too because a steady stream of friends showed up at the hospice in his final days to visit him. We also are so thankful for his wife Brenda who loved him deeply, was so devoted to him and strong for him, and brought him immeasurable happiness. I'll end with the last line of one of Brenda's postings on his facebook page when he entered hospice.
"If there is ever a time when you are sad or down on life, please ask yourself, 'What would Kevin do?' and I promise you will find the courage and strength you need. He loves you all!"




Luke 1:37

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Becky C.'s picture
Replies 9
Last reply 10/7/2012 - 10:03am
Replies by: kellygrl, Becky C., jag, Ali, Amanda, jmmm, benp

Hi everyone.I have not been on in awhile but have been reading and keepin up with my fellow patients out there.  I was so sorry to hear about Kevin.He was so courageous in sharing his experience.  After being NED for alittle over a year, I just found out this week that I have brain mets, MRI says most likely from my melanoma primary which was on my foot. I have a total of six lesions, one larger one that I will have surgery on, then follow with radiation for the rest. Not sure what treatment will be beyond that. Naturally, I am scared to death. I would really like to hear some success stories from those who were successfully treated for brain mets. I really appreciate it, thank you.

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