Thursday, 30 June 2011

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:

Tuesday, 21 June 2011

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.

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

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.

Thursday, 16 June 2011

Return to work fatigue

I'm just completing my 2nd week of a return to work program. Luckily I only work 3 days/week. I find my biggest issue post surgery other than the leg swelling, is the fatigue. Sometimes it's overwhelming.

I'm surprised to find it's emotional fatigue more so than the physicial fatigue. It's not really even work related for the most part. What I mean by emotional fatigue, is that most days I don't think about the Melanoma as much as I used to. But since I've returned to work, I have everyone (kindly) coming up to me and wanting to know how I am. Telling me they are glad I'm back to work. And some of them actually want to know the bigger story and want some details. So I find myself sharing. I've always found that sharing is healing for me. But I also find myself having to deal with what happened to me over and over again. I certainly don't mind sharing, and like I said, it's healing, but it can be emotionally draining. And it's something I didn't think about before I returned to work. And because I work with over 100 different staff, I see different people every day. So that's a lot of times reliving my experiences. Just something to think about if you are in a position to go back to work after being off recovering from surgery and various other treatments. Luckily I work with a fabulous group of people and they are not treating me any different from before. It's nice to feel that I'm still normal.

I did find this week at 6 hours/day more tiring than last week at 4 hours/day. Yesterday I went up and down 6 flights of stairs - not all at the same time but within a few minutes of each other. Now, that's not much of a feat, I hear some people say, but for me, with muscle missing from my calf, it is. I'm also not ashamed to say that I'm not in tip top shape either.

Wednesday, 15 June 2011

Melanoma International Foundation

This is a great website for information and support. There is a forum to ask questions and get answers from people who have been where we've been.  The president and founder is a melanoma survivor who is also the author of a book on prevention, detection, and treatment of Melanoma. There are also webinars to keep you up to date on latest treatments. Amazing stories on the forums. Have a look.

Tuesday, 14 June 2011

This link shows pictures of the different kinds of skin cancer

There are lots of pictures to look at the show basal cell cancer, squamous cell cancer, some pre-cancers, and most importantly melanoma - the deadliest skin cancer.

Monday, 13 June 2011

Updated picture of my shark bite

This picture was taken on April 26, 2011 - 3 weeks after the first picture. I had the simple sutures on the top and bottom of the incision taken out and just the 3 mattress sutures were left in. I ended up having a wound infection in the open areas. It was +4 Staphlococcus - I was on antibiotics for over 3 weeks and it cleared up. I will post that picture another time.

Saturday, 11 June 2011

A Picture of My Shark Bite

Here is a picture of what my incision looked like during my first dressing change. I thought it would be small as they said they were taking a 3 cm margin. Didn't know that they had to make an 8" incision to do that. I was a little freaked at first. All the extra colours are the cleansers, ink from the marking pens as well as the swelling.

Friday, 10 June 2011

Terminology Explanations

Here I will talk about some of the terminology you hear a lot when learning about Melanoma.
Clark's Levels of Invasion:
Level 1 - Melanoma cells only in the epidermis (in-situ, non-invasive)
            - growing and spreading on the surface of the skin only - see picture         
Level 2 - Invasion of papillary dermis by melanoma cells (less than 10 cells wide)
            - growing and spreading on the surface of the skin but also growing deeper through the second layer
Level 3 - Tumor cells expand and fill the papillary dermis
            - growing and spreading deeply through the first two layers of the skin 
Level 4 - Tumor cells grow down into the reticular dermis- third layer of the skin
Level 5 - Tumor cells grow down into the subcutaneous tissue- the fat layers

Mine is Level 4.

Breslow's Thickness:
Thickness is the most important prognostic feature - the thicker it is, the worse it is.
Depth of invasion is measured in millimetres from the top of the mole to the deepest melanoma cell.
Less than 1 mm - usually no lymph node involvement
Greater than 4 mm - high risk that lymph nodes are positive for melanoma cells

Mine was 2 mm.

Breslow ThicknessApproximate 5 year survival
<1 mm95-100%
1 - 2 mm80-96%
2.1 - 4 mm60-75%
>4 mm50%

There are different types of melanoma - mine was called Nodular.

Nodular Melanoma is the fastest growing and it likes to go deep. It may or may not grow on an existing mole. Usually it is a new spot. They are mostly dark, but can be light - mine was light and it grew on top of an existing mole. They are more common in men than women and are usually on the top of your head, on your shoulders or back. Mine was on my calf. It usually appears in people 60+ years old. I'm only 50. So this was a really odd type on melanoma for someone like me. Nodular melanoma happen in about 15% of all melanomas.

Superficial Spreading Melanoma is the most common type at about 70% of all melanomas. As the name suggests it spreads on the surface of the skin and does not penetrate deeply. It can happen in people of all ages and slightly more in females. In females it is more likely seen on the legs. In males it is more likely seen on the area between the neck and waist. But can be all of those places in either males or female. These melanomas can be any colour and usually have irregular borders. These can be itchy and grow fast.

Lentigo Melanoma usually show up on the face of middle aged or elderly people that have a lot of sun damage. They are about 10% of all melanomas. People think they are "sun spots". It has irregular borders and can be many shades of brown.

Acral Lentiginous Melanoma are about 5% of all melanomas. These show up on areas of the body that aren't as easily seen or no one thinks to look there for melanomas: palms of hands, soles of feet, in the mouth, nose, or female genitals, under or near fingernails and toenails. In the early stages can look like a bruise or nail streak.

For pictures you can go to SkinCancerNet:                                            

Thursday, 9 June 2011

My Story

My name is Carolyn Myers. I'm 50 years old, married with 2 teenaged children. We all live in British Columbia, Canada. In November or December 2010, an existing mole on my right calf started to change. Initially I noticed that it wasn't as flat as it was before. Then I had to be careful while shaving my legs. Then a funny spot showed up on 1/2 of it that looked like a pale nodule. I didn't think a lot of it at first, but then it started to get bigger and bigger quite quickly. Then it started to hurt. I made an appointment with my family doctor in February and she removed the mole plus 2 others that were getting larger. I didn't think anything more as I'm usually really lucky and reasonably healthy. Hey, nothing ever happens to me! I was at work when I got the phone call. I was told the mole on my leg was a melanoma. Wow! Hit me over the head with a baseball bat. I'm not a crier, but I put my head on my desk and sobbed until my head almost exploded. I went home and told my husband and then the doctor phoned me back to tell me it was a Nodular Melanoma, Clark's level IV, 2 mm, into the reticular dermis, non-ulcerative. She said the pathologist said not to worry about it but she would refer me to a surgeon who specializes in melanoma. The surgeon said standard treatment was a wide excision and sentinal lymph node biopsy and when could I do this. I was on my way to Disneyland with my children and I asked if we could do things when I returned. I also had an appointment with a plastic surgeon as it was likely I would need a skin graft. March 31, 2011 I had the surgery and luckily enough, didn't have a skin graft. But my leg looks like I had a shark bite. They did a 3 cm margin - like 1/2 a golf ball taken out of my leg. Now, from all my walking, my calves are large(ish) and muscular, so this was not an easy surgery. I'm one of the lucky ones in that all the margins are melanoma free and my lymph nodes are clean. 3 weeks of non-weight bearing and keeping my leg elevated at all times, made me weak as a kitten. It took a long time to get back on my feet again. Then I got a Staph +4 infection in the wound site. Yuck! About 6 weeks after the surgery, the surgeon removed 4 more moles - 2 that he thought should come off, and 2 that I thought he should take off. 3 of them are Clark's nevi (dysplastic nevi). I also have to see a dermatologist at the end of August for mapping and assessment.
Now, I say I'm one of the lucky ones, but in my research and looking at other people's blogs, I have discovered that the fight against melanoma is not over. Yes I have dodged a bullet, but I have to stay vigilant my entire life and so I look at this as a journey to recovery and an opportunity to share my story and help educate people on the risks of developing melanoma.