My First Visit with the Oncologist

Wow! 2 posts in one day. New record for me but I wanted to talk about the oncologist visit. I know a few other blogs I follow like to nickname their docs. I usually don't nickname anyone, but this guy deserves it. I was a little nervous going to the appointment as I wasn't sure what to expect. Dr. R. walks in and all I can think is he is the poster child for Metrosexual Guy. I was thinking I should then call him Dr. Metrosexual - but that's too long, he really should be Dr. Metro. hahaha. Anyways, nice human being. Young, handsome, nice suit, warm hands, light touch. Warm and caring but shoots straight from the hip. I really liked his approach. My main goal was to have a planned follow-up where someone actually knew what they were doing. So we have "plans". Unfortunately none of them include visiting him again unless this ugly "beast" comes back. Not that I'm overly sad. I can see nice looking men anywhere - the beach is one of the places. So this is the 5 year plan:

• GP and lymph node checks every 6 months x 2 years then yearly x 3 years. 
• Chest x-ray and blood work yearly x 5 years
• Dermatologist visit yearly x 5 years - but likely for life
• Go to doc anytime you have a change in moles or new ugly things, fatigue, loss of appetite, loss of weight, generally feeling unwell - now I was just about to say, I have all of these things all the time (except I'll take the weight loss), but he said it has to be a change from how I usually feel - OK then

Here in Canada, they are way more conservative with their testing. They don't believe in extra radiation exposure for Stage I and II Melanoma. The stats just don't support it and apparently the outcomes aren't any different and there are lots of false positives. So no CT, MRI, or PET scan - unless I choose to pay for it myself. I know my family doc would order some of that stuff if I pushed, but at some point I have to trust. He reworked my staging and said I was Stage Ib - which I was surprised as I was told I was Stage IIa. So I have to do a little more research. Although the stats are way better at Stage Ib. I like the 90% 5 year survival and 85% 10 year with a <10% recurrence. But who am I kidding, I truly think I'm a Stage IIa. I always have to look at worse case scenario to get through the tough spots. I know a lot of people are saying "Stage II - you should be thrilled, doing the happy dance and be half way to the moon". I am, I am, I am. But I also have been listening to your stories about starting off at Stage II........and, well, you know where you are at. But am trying to stay positive and keep the faith - and doing my happy dance.
Cheers all.

Walk to Remember report

So yesterday was the walk. Beautiful weather: sunny sky, not too hot - in the shade, small breeze, fabulous location. Not many people showed up. I was disappointed, but not too terribly surprised as there is just not the awareness for Melanoma as there is for other cancers. But for the good stuff, those of us that were there were fabulous people!!! Kathy from the Save Your Skin Foundation was there - I was pleasantly surprised because they had a walk in West Vancouver as well. But she knew Klara - who was the person we were remembering and it was Klara's idea to start these walks. Her goal was to have walks in as many communities as possible across Canada., Well, we had 3 communities in Canada and 1 in Caans, France - how about that!! I was lucky enough to have my BFF Laurie come with me and we got to meet the people who were family, friends, and co-workers of Klara's. She sounds like she was an extraordinary person. I wished I would have known her. She was 23 when she died in 2009. Her Mom Lida and her sister Dominika pulled off this event almost single-handedly. Every year will be better. I don't know how much money was raised, but the spirits were high. We had a picnic afterwards and I won the door prize - go figure. Then Laurie and I went out for a fabulous supper and talked and talked. Was a very good day and evening.

Walk to Remember

Today at 5:00 pm the Save Your Skin Foundation is hosting Walk to Remember. This is a Melanoma awareness walk with a picnic and silent auction. It is being held at the Mission Creek Regional Park in Kelowna BC. This is the second annual and first nation-wide walk. Lida is the prime motivator in this walk. She lost her 23 year old daughter Klara to Melanoma and needed to do something with the grief. So she got together about 75 people last year and held a walk. A Walk to Remember. They remembered, they cried, they talked, and they tried to heal. This year, the Save Your Skin Foundation is hosting a similar walk in a few other communities at the same time to help raise awareness and to network with other Melanoma Warriors. The other communities are West Vancouver, BC and Halifax, Nova Scotia. Our main goal is to raise awareness of this "Beast". It is the fastest growing cancer and the fastest growing killing cancer especially of young people. It kills more young women than breast cancer. It is very scary. I'm hoping that over time, as I heal, I will be able to be more involved in the raising awareness campaign. I want to be walking the beach and talking to as many people as possible. Is one of the number one leisure activities in the sunny Okanagan. And yet I find Melanoma awareness is nowhere near number one in people's minds.
I will post after the event and tell everyone about it. If you wish to donate to the Save Your Skin Foundation, here is the link.
http://www.saveyourskin.ca/donate.html

Lots of new info on facebook and blogs

Wow! I`ve just spent all evening cruising my Facebook of the same name as my blog. I cannot believe all the interesting posts my fellow Melanoma Warriors have been putting out there. Please go have a look. There are a lot of resources available. I just wish I would have had this info before my diagnosis. But, then again, who knew I`d be needing it. That`s the problem with this ``Beast`` - you don`t know what you need to know until you need to know it. Most people blindly stumble through life oblivious to all the dangers out there. And, for the most part, that`s good. We`d hate to live our lives fearful and jumping at any shadows. But now we know what we know and forewarned is forearmed. I also think it`s great that everyone is sharing their experiences so that the rest of us know what we can expect. The pics of the befores and afters really speak volumes. It`s good also to see the wound recoveries. A few of us have been experiencing issues with healing and it`s good to see the stages of healing on people that have similar wounds on similar body parts. It gives us hope for the healing and hope for the future. Keep on posting everyone. The world is watching.

Random Thoughts

This is a busy time of year. School's out, kids are hanging around, vacation is around the corner, sun is blazing, activities abound - it's hard to keep up with blogging, FB, friends, family etc. My daughter's 13th birthday was July 4th. She had a beach party on the 2nd out at our favorite summertime hangout - Sunoka Beach - in Summerland, BC. Notice how everything I've mentioned so far has summer and sun written in it. Normally I'd be looking forward to the sun and beach time. Following my Melanoma diagnosis and my surgery, I'm just not so into it. I found I spent the entire day on Sat. reminding the kids to reapply sunscreen, stay out of the sun after 1/2 hour, come sit in the shade, reapply sunscreen..... on and on. But the kids were so great. Most of them knew what had happened to me and they were just happy to listen to me and do what I told them to. It did my heart good when I didn't have to nag or meet up against any resistance. My 14 year old son and his friend were there as well and they were good too. Me - well - I was slathered in the stuff and under an umbrella - but, for people that know me, that's no different from normal. That's the kicker in this whole thing. I've been extremely sun smart for a minimum the last 13+ years. I've been intolerant of the heat since I've been pregnant with my daughter. So most of my friends and family are shocked that I would have gotten Melanoma. But they forget the extreme sunburns I received as a child. I grew up in an era of no sunscreen because there was none. My family wouldn't have been able to afford it probably anyways. Us kids were out playing in the sun all day and no one ever thought anything of it. Who knows if that's the only source of my Melanoma. As far as I know we have no family history. My 91 year old grandmother has a few spots of squamous cell on her face, but no Melanoma.
So the rest of my summertime plans are: find a really good broad brim hat (yeesh, I hate hats), keep reapplying the sunscreen, have already bought 2 new sun-blocking umbrellas, have bought 4 bottles of 60 SPF UVA/UVB sunscreen, and, oh, yes, the best part, I plan to have lots of fun. We have to remember not to get so bogged down in this muck that we forget to have fun. Fun and laughter boosts our immune system. And from everything I've read about Melanoma, having a boosted immune system is about the only thing that fights this thing.

My Thoughts on the Save Your Skin Patient Information Symposium in Vancouver

Well, I certainly can't believe where the time went this week! I attended the symposium Saturday and then enjoyed Vancouver and area Sunday and haven't had a minute to blog the rest of the week. So I'd like to post my thoughts and share some info. These are only my impressions and what I got out of it.
There were fabulous speakers:
Dr. Joel Claveau, dermatologist at the Melanoma and Pigmented Lesions Clinic, CHUQ Hôtel-Dieu de Québec spoke via video conference. He was very dynamic and was easily understood by everyone there. He gave the latest stats: Melanoma is increasing at a rate of 2-3% per year. It's the fastest increasingly diagnosed cancer. Estimated 1/59 in 2010 and 1/50 by 2015. This is a worldwide phenomena. In Canada in 2011 - 5,500 cases/year and 950 deaths. It appears Melanoma diagnoses are under reported. In July 2009, WHO (World Heath Organization) stated UV is an official carcinogen. I'm hoping my numbers are correct - I was writing so fast. Any errors are mine. Some of the other things he mentioned was that people are still getting burned using sunscreen because: people were under applying sunscreen, you need to put it on thicker; people are using a poor quality sunscreen, and they weren't reapplying. The worse things people do is forget to use other methods to protect themselves against too much UV exposure: hats, UV protectant clothing and umbrellas, staying out of the sun during the highest UV times etc.
Dr. Sasha Smiljanic, medical oncologist at Lion's Gate Hospital North Vancouver BC. He spoke more medicalese and spoke about studies. He explained Interferon - saying it is a naturally occurring cytokine that has a role in activation of the immune system. It's used as a treatment in high risk melanoma after surgery - Stage III. The treatment is for a year. Improves survival rates 5-10%. He also spoke about Ipilimumab (Yervoy). He said it downregulates T-cell activation - in layman's terms - T-cell activiatin turns the brakes off the immune system and then Yervoy turns the immune system on again. I didn't really understand it thoroughly - sorry. Yervoy is the first agent to show overall survival benefit in Melanoma when compared to standard of care (chemo/radiation). It cranks up the immune response. Long-term (>3 years) - control of Melanoma in 25% of patients - Yervoy vs standard chemotherapy - Dacarbazine (DTIC).
Dr. Michael Smylie, medical oncologist at the Cross Cancer Institute Edmonton, Alberta. I was looking forward to hearing Dr. Smylie as I've heard so much about him. He started off saying that he's been working with Melanoma patients for 17 years and that he's been depressed for 16 of those years because there hasn't been a significant improvement in Melanoma therapies. He spoke about chemo not being really effective in Melanoma especially metastatic. He mentioned that tumor vaccines have failed to date. He spoke a bit about Interleuken II, Targeted Therapies - BRAF. He said that Melanoma had something called BRAF mutation in 50% of patients. There is immune activation with no turn off system. From what I understand BRAF is a protein that is involved in cell division, differentiation and secretion. When there is a mutation, it can cause cancer. Then he mentioned Vemurafenib which works in BRAF patients - response rate >50%. Decreasing death by 63%. In the BRIM3 study there was a median 6 months shrinkage in tumors.
Following these talks there was a panel that included the 3 above speakers to answer questions from the audience. Some of the things I took away from this was answers to my questions which were about follow up after Surgery and for my Stage II. They said I should be going to the dermatologist yearly, the oncologist every 4 months and family doctor 2-3 times/year. They weren't pro having a CT or any other radiological test for baseline unless there was something that definitely needed to be checked out. They said a CT scan had 2,200 times the radiation of a chest X-ray. They said the risk of that causing problems outweighed the benefit of a baseline CT scan. I was surprised about that. I also don't know if it will change my mind about having a baseline CT scan. We'll see.
Another thing I took away from the panel discussion was that 30 SPF was a minimum for sunscreen but higher than 50 SPF didn't give exponentially more protection - it gives a false sense of security.
They mentioned that Melanoma was radiation resistant and that radiation was only effective paliatively for comfort.
Also there was a fellow there that was speaking about his pregnant wife having Melanoma and he was worried that the baby would be at risk. The panel believed that there was a risk to the baby and the doctors would have to be vigilant in checking over the baby and monitoring it for signs of Melanoma. Who knew that Melanoma can be passed through pregancy.

So to wrap up what I learned, basically if you have Stage I and II Melanoma, your prognosis is pretty good, but there still wasn't a lot promising for treatments during Stage III and IV. There is still a lot of research going on and the new clinical trials are showing good results with Yervoy and Vemurafenid. I sure hope they come up with new stuff fast.This is all that is available in Canada anyways. I know things are different in the USA.

Like I said, any errors are mine and so are any opinions. If you have any questions, please feel free to email Kathy Barnard at the Save Your Skin Foundation:

Kathy@saveyourskin.ca

Save Your Skin Patient Information Symposium Vancouver BC

This Saturday my BBF Laurie and I are going to attend the Save Your Skin Patient Information Symposium in Vancouver. All throughout the forums I've been cruising lately (that seems to be a new passion of mine) I've heard about a wonderful Melanoma Specialist from Edmonton Alberta - Dr. Smylie. He just happens to be one of the speakers at Saturday's Symposium. Wow! What luck. An angel on one of my forums told me about this event. So, of course, I signed up right away. It's free. I can't wait to hear the experts and to actually get to meet others who are working their way through their Melanoma trials and tribulations. I'm posting the link and any further information in case it's useful for someone. Cheers.

http://saveyourskinpatientsymposium.eventbrite.com/

Save Your Skin Foundation invites you to attend a free Patient Information Symposium on Saturday, June 25th.
The free event will provide critical information, resources, support tools, as well as the rare opportunity to speak with leading specialists.
The event begins at 10:00am and will run until 2:00pm.
To register, please fill out the registration form and submit. You will receive a confirmation email with further event details and the timing of key presentations.


Event Details:
Date: Saturday, June 25th, 2011
Time: 10:00am - 2:00pm
Location: Vancouver Art Gallery, 750 Hornby Street

The event will offer various information stations, each providing valuable information on melanoma and non-melanoma skin cancers and current available treatments and support options. There will also be short presentations and Q&A opportunities with top skin cancer specialists.
Several leading experts will speak at the Symposium, including Dr. Michael Smylie (Medical Oncologist, Cross Cancer Institute, Edmonton, AB), and Dr. Sasha Smiljanic (Medical Oncologist at the Lions Gate Hospital, North Vancouver, BC).


For further information please contact Marion Perole at 604-734-4223 or by email at mperole@karranfinlaymarketing.com

About Melanoma in Canada

Every year, thousands of Canadians are diagnosed with Melanoma, with the incidence of the disease increasing faster than that of any other cancer. One in 74 men and 1 in 90 women are expected to develop melanoma during their lifetime; 1 in 284 men and 1 in 486 women will die of it. It is the most dangerous type of skin cancer, causing 75% of deaths associated with skin cancer. Currently in Canada, there is no treatment proven to extend the lives of people diagnosed with metastatic (advanced) melanoma, despite the rising incidence of the disease.

The Save Your Skin Foundation was created by family, friends, and colleagues of Founder Kathy Barnard, who is currently battling melanoma. Save Your Skin is a Canadian based not-for-profit Foundation. Through events and other initiatives, the Foundation focuses on raising funds for education and awareness, providing emotional and financial support to those dealing with skin cancer, and on supporting the ongoing research and treatment of skin cancer.

Funds raised go towards providing critical and timely treatments, as well as ongoing education, research, and awareness initiatives.

http://www.saveyourskin.ca/