How is it possible that my eyelashes are falling out again? Almost 5 months to the day since finishing chemo, when I was washing my face at night, I started to notice my eyelashes on the facecloth. Thank goodness for the internet and other blogs I had read that warned me this was coming.
Apparently a lot of women experience losing their eyelashes and eyebrows a second and even third time post chemo because eyelashes go through the process of loss and regrowth in repetitive cycles. After chemo, your eyelashes all grow in at once which means that as part of their cycle, they also fall out all at once. This usually happens about 4-5 months post chemo. Based on what I've read, the only thing you can do is to wait for your body to naturally restore itself after your treatment meaning that this could happen a few more times...great! I was hoping the Latisse I had been using would help but no such luck.
At least both my brows and lashes have just thinned dramatically but not fallen out completely. Nothing that a little mascara, eye liner and eyebrow pencil can't fix. What really would have helped is if one of my many doctors would have warned me about this. Sometimes I think they forget that hair loss, although maybe less traumatic than some of the other side effects from cancer treatments, does have a profound impact on people and warning them about things like this goes a long way. I guess that's what blogs like this one are for!
Saturday, 19 March 2016
Sunday, 13 March 2016
Don't Judge a Book by it's Cover
I saw this posted on Instagram and could totally relate. Over the last few months, I have received so many compliments about how good I look which is always appreciated and nice to hear but at the same time, it makes me wonder if people really realize what I have been through. Sometimes I think people, myself included, look at someone who is young, fit, vibrant and can't imagine that they are fighting cancer or lyme disease or crohn's or whatever the case may be. I am the type of person that tends to downplay things so when I have a bad day or admit to being in pain, it can catch my loved ones off guard. This breast cancer experience has given me such a deeper appreciation for what other people might be going through even though they don't appear to be "sick". What is that old saying? Don't judge a book by it's cover.
This has especially rang true for me recently as I have finished treatment. My employer has been quick to call and advise that it is time to start thinking about a return to work plan and while I understand their position, it's all happening a little too quick for me. While I have been off, I have kept in touch with co-workers and I know what they are thinking....she looks fine, she should be ready to come back to work soon, it's already been 9 months. The truth is, I do look fine, in fact I have lost 15 pounds and probably look better than I did before cancer but mentally, I'm just not there yet. Getting ready to face co-workers I haven't seen, keeping up my exercise routine and healthy eating habits while sitting in an office for 8 hours a day, not allowing myself to get stressed out by my job or the possibility of cancer returning...all of that just feels like too much right now. So instead of worrying about it, with the remaining time that I have off, I am going to continue looking fabulous and work on getting my mind to feel the same way.
Tuesday, 1 March 2016
Is PCR Everything?
When reading through articles, especially about Triple Negative breast cancer, everyone places so much emphasis on a PCR (pathologic complete response). When you have neo-adjuvant chemotherapy, one of the benefits is that the doctor can monitor your response by measuring the tumor (either by feeling it or with an ultrasound). The definition of a pathologic complete response can differ depending on the study being done, which presents an issue in terms of finding a consistent way to classify it. Most studies define it as the absence of residual invasive disease in the breast and in the axillary lymph nodes at the completion of the neoadjuvant treatment. This definition allows for in situ carcinoma, also known as DCIS, to still be present.
Based on the information I have gathered, achieving a PCR is more common in Triple Negative breast cancer because this type is more sensitive to chemo. Studies state that anywhere from 20-30% of women who's cancers lack estrogen, progesterone and HER2 receptors will achieve a PCR. Surely you have read articles like this one stating that patients who achieve a pathologic complete response with neoadjuvant therapy tend to have a very good prognosis. These women are at much lower risk for subsequent distant disease recurrence.
This is all fantastic news for those women that achieve a PCR but what about the other 70-80% of us? Does the fact that we had residual disease mean that we are doomed? Hearing about PCR over and over again, knowing that I did not have a complete response, does not make me feel good and surely there are others that feel the same way. Perhaps you have asked your Oncologist the same questions I have - is there anything else I can do? Do I need more chemo?
There are some women whose doctors will advise that more chemo is recommended but I am not one of them. I have seen 2 different Oncologists now who both said there is no concrete research showing that additional chemo has a long term benefit in terms of overall survival. When weighing the benefits versus potential toxicity, in my case, it is not recommended. So what do I do now? Unfortunately the medical response is "we wait and see". Frankly, I think that is bullshit and the wait and see approach doesn't work for me. I don't want to get back to living my life and forgetting this whole ordeal ever happened. What kind of advice is that anyway?
More to come in a later post about additional steps I am taking to prevent a recurrence. One article that I did find helpful in explaining the prognostic significance of residual disease can be found here: http://jco.ascopubs.org/content/25/28/4414.full. Using the residual cancer burden calculator, it shows that I fall into RCB-I. Maybe I am an underachiever and did not attain the almighty PCR but this does give me some hope that there is light at the end of the tunnel.
Based on the information I have gathered, achieving a PCR is more common in Triple Negative breast cancer because this type is more sensitive to chemo. Studies state that anywhere from 20-30% of women who's cancers lack estrogen, progesterone and HER2 receptors will achieve a PCR. Surely you have read articles like this one stating that patients who achieve a pathologic complete response with neoadjuvant therapy tend to have a very good prognosis. These women are at much lower risk for subsequent distant disease recurrence.
This is all fantastic news for those women that achieve a PCR but what about the other 70-80% of us? Does the fact that we had residual disease mean that we are doomed? Hearing about PCR over and over again, knowing that I did not have a complete response, does not make me feel good and surely there are others that feel the same way. Perhaps you have asked your Oncologist the same questions I have - is there anything else I can do? Do I need more chemo?
There are some women whose doctors will advise that more chemo is recommended but I am not one of them. I have seen 2 different Oncologists now who both said there is no concrete research showing that additional chemo has a long term benefit in terms of overall survival. When weighing the benefits versus potential toxicity, in my case, it is not recommended. So what do I do now? Unfortunately the medical response is "we wait and see". Frankly, I think that is bullshit and the wait and see approach doesn't work for me. I don't want to get back to living my life and forgetting this whole ordeal ever happened. What kind of advice is that anyway?
More to come in a later post about additional steps I am taking to prevent a recurrence. One article that I did find helpful in explaining the prognostic significance of residual disease can be found here: http://jco.ascopubs.org/content/25/28/4414.full. Using the residual cancer burden calculator, it shows that I fall into RCB-I. Maybe I am an underachiever and did not attain the almighty PCR but this does give me some hope that there is light at the end of the tunnel.
Friday, 26 February 2016
Mepitel Film Review
The results are in and I think the Mepitel film gets a passing grade but unfortunately not 100% from me. Based on all of the positive things I was hearing, I was really hoping to be one of those women that sailed through radiation but no such luck. I got to #20 of 25 regular treatments and one night the skin in my armpit area started to itch like crazy. It wasn't overly red so I wasn't concerned but when I woke up the next morning, 3 pus filled blisters had formed right at the edge of the film. My doctor recommended keeping it on but after 2 days, both the look and smell were really starting to gross me out. Sorry if this post is disgusting but I figured I would share for anyone who is in the same situation. I ended up cutting the film in the affected area and did the remainder of the treatments without it. As soon as I took the film off and showered, it felt so much better. The doctor recommended doing a compress with saline and gauze, 4 times a day for 15 minutes each then letting it breath. The blisters started to go away after only about 2 days of doing this and thankfully, so did the smell. Gross!
I think my problem was two fold:
1. I continued to work out 5 days a week during radiation and having a film over your armpit when you are sweating does not create a good environment.
2. I was applying a small amount of deoderant on my underarm area above the film to avoid sweating. Not a good idea. My Radiation Oncologist who I saw many times before starting and once a week after said nothing to me about the dangers of wearing a regular aluminum containing deoderant during treatment. First of all, I had no idea that so many deodorants contained aluminum and secondly, it makes so much sense now that it would react with my skin. After discovering this, I have read a bunch of blogs with people recommending Crystal, Toms and some other natural deoderants that are safe to wear during radiation.
My last day of radiation was a week ago and after 25 regular treatments and 5 boosters, my armpit is burnt to a crisp. The skin is a mix of black areas that haven't peeled yet, red areas where the skin has just peeled and pink skin where it is starting to heal. The rest of my breast is red but seems to be holding up just fine which is why I think the Mepitel film did work. I have been putting Calendula cream (made from calendula flowers and available at natural food stores) on the areas where the skin is still in tact and it seems to be helping.
Radiation and it's after effects have actually been worse than chemo for me. It seems that in 99% of cases, it is the other way around but as usual, I am an exception to the rule.
I think my problem was two fold:
1. I continued to work out 5 days a week during radiation and having a film over your armpit when you are sweating does not create a good environment.
2. I was applying a small amount of deoderant on my underarm area above the film to avoid sweating. Not a good idea. My Radiation Oncologist who I saw many times before starting and once a week after said nothing to me about the dangers of wearing a regular aluminum containing deoderant during treatment. First of all, I had no idea that so many deodorants contained aluminum and secondly, it makes so much sense now that it would react with my skin. After discovering this, I have read a bunch of blogs with people recommending Crystal, Toms and some other natural deoderants that are safe to wear during radiation.
My last day of radiation was a week ago and after 25 regular treatments and 5 boosters, my armpit is burnt to a crisp. The skin is a mix of black areas that haven't peeled yet, red areas where the skin has just peeled and pink skin where it is starting to heal. The rest of my breast is red but seems to be holding up just fine which is why I think the Mepitel film did work. I have been putting Calendula cream (made from calendula flowers and available at natural food stores) on the areas where the skin is still in tact and it seems to be helping.
Radiation and it's after effects have actually been worse than chemo for me. It seems that in 99% of cases, it is the other way around but as usual, I am an exception to the rule.
Saturday, 13 February 2016
Juicing & Smoothies
Towards the end of my chemotherapy treatments, I started hearing more about the benefits of juicing and smoothies in documentaries that I was watching and from my Naturopath. Fat, Sick and Nearly Dead is a great documentary on Netflix about an Australian named Joe Cross who is tired of being overweight and unhealthy. In the documentary, he sets out to regain his health by juicing for 60 days. At the end, you will see that he was able to lose the excess weight and get off of medications that he was taking every day due to an autoimmune disease.
When I go back to work, I realize that making a fresh smoothie every day will be a bit more of a challenge. It is best to drink your smoothie/juice right away to get the optimal nutrients but you could always make it the night before and refrigerate if you don't have time. I find it easiest to wash all of the fruits and vegetables the night before so in the morning, all I have to do is throw them in the blender and go.
Tip - Don't forget to put some veggies in there! I find most of the store bought smoothies contain all or mostly fruit which makes them high in sugar (although it is natural sugars). When searching for recipes, I always look at the fruit to veggie ratio and either add additional veggies if there aren't enough or cut the amount of fruits with a high glycemic load like bananas and dates. For example, if the recipe calls for a banana, I usually put half and find it is plenty sweet.
This movie inspired me to start juicing as an easy way to ensure that I am getting the proper amount of fruits and vegetables every day. Unfortunately, after juicing for about a month, I discovered that it wasn't for me. I was buying a ton of vegetables just to make a tiny glass of juice and didn't like how all the the fibre was thrown out. Instead, I decided to try smoothies which are also a good option to ensure you are eating fruits and vegetables but in a way that you are keeping the fibre and there is not as much waste. If you are interested in the pros and cons of juicing versus smoothies, I found this article helpful:
Regardless of which option you choose, I highly recommend it as a way to ensure you are eating right during chemo and radiation. At my hospital, I found they took a 'eat whatever makes you not feel sick' approach. What I wish they realized is that there are people who still want to try and eat healthy as much as they can and encouraging us to eat popsicles (which are pretty much void of any nutritional value) probably isn't the best approach. If you can stomach a juice or smoothie, regardless of whether it is homemade or store bought, it does so much more for your body than popsicles which are lacking vitamins and minerals and are full of refined sugar.
Here are some delicious smoothie recipes that I enjoy:
When I go back to work, I realize that making a fresh smoothie every day will be a bit more of a challenge. It is best to drink your smoothie/juice right away to get the optimal nutrients but you could always make it the night before and refrigerate if you don't have time. I find it easiest to wash all of the fruits and vegetables the night before so in the morning, all I have to do is throw them in the blender and go.
Tip - Don't forget to put some veggies in there! I find most of the store bought smoothies contain all or mostly fruit which makes them high in sugar (although it is natural sugars). When searching for recipes, I always look at the fruit to veggie ratio and either add additional veggies if there aren't enough or cut the amount of fruits with a high glycemic load like bananas and dates. For example, if the recipe calls for a banana, I usually put half and find it is plenty sweet.
Wednesday, 10 February 2016
Chasing the Cancer Answer
I feel like everyone I have talked to with breast cancer has some theory as to why this horrible thing happened to them. You can't help but think "what have I done to cause this?". Any social worker, mine included, will likely tell you that you didn't do anything...this is not your fault! As a patient, that's nice to hear but the increasing number of people getting cancer has to be somebody's fault. It's not just chance that 1 in 8 women will develop breast cancer in their lifetime. Everyone has heard that statistic advertised, especially during breast cancer awareness month in October when you can't seem to escape it. The equally as troubling statistic to me is that 2 out of 5 Canadians (45% of men and 42% of women) are expected to develop cancer during their lifetimes. Not only that but the number of new cancer cases in Canada is expected to rise about 40% in the next 15 years, according to a new report – Canadian Cancer Statistics.
Most of the articles with these statistics usually have a subsequent paragraph saying something like "you can reduce your risk of developing breast cancer with early screening and being aware of the risk factors". Unfortunately a lot of women that get breast cancer, especially young women like me, don't have any risk factors. I have no family history, I am not overweight, I was never exposed to radiation as a child, I drink little to no alcohol...the list goes on. So what the hell caused this?
Genetics - I have been tested for the BRCA 1, 2 and P53 gene mutations. Especially if you are triple negative, this is something to ask your doctor about and the sooner the better as the results take some time (mine took about 2 months). Depending on the results, a different chemo may be prescribed, for example, studies show that BRCA positive women might respond better to platinum chemotherapy drugs like Carboplatin.
The Birth Control Pill - I was on the pill for 10 years and had just stopped it 1 year prior to being diagnosed. Coincidence? I think not. Although drug companies obviously aren't publicizing the fact that the pill is linked to an increased risk of developing breast cancer, there are quite a few studies that have shown this and the International Agency for Research on Cancer has now listed it as a known carcinogen.
http://www.nbcnews.com/id/8759578/ns/health-womens_health/t/hormone-pills-added-list-carcinogens/#.VrFeIVMrJ8c
There are a ton of other things that could have caused my cancer, some I will probably touch on in a later post but for now, I will leave you with this really interesting video of Wendy Mesley who is a Canadian journalist that was diagnosed with breast cancer. It is from 2006 but in it she asks a lot of the same questions I am asking today that we still don't have answers for. There is one part where she says "at what point do you stop looking for the easy answers like 'eat your veggies' and tackle the more complicated issue of all the carcinogens that we are eating and breathing and drinking every day?" I couldn't agree more!
http://www.cbc.ca/marketplace/episodes/archives/chasing-the-cancer-answer
Most of the articles with these statistics usually have a subsequent paragraph saying something like "you can reduce your risk of developing breast cancer with early screening and being aware of the risk factors". Unfortunately a lot of women that get breast cancer, especially young women like me, don't have any risk factors. I have no family history, I am not overweight, I was never exposed to radiation as a child, I drink little to no alcohol...the list goes on. So what the hell caused this?
Genetics - I have been tested for the BRCA 1, 2 and P53 gene mutations. Especially if you are triple negative, this is something to ask your doctor about and the sooner the better as the results take some time (mine took about 2 months). Depending on the results, a different chemo may be prescribed, for example, studies show that BRCA positive women might respond better to platinum chemotherapy drugs like Carboplatin.
The Birth Control Pill - I was on the pill for 10 years and had just stopped it 1 year prior to being diagnosed. Coincidence? I think not. Although drug companies obviously aren't publicizing the fact that the pill is linked to an increased risk of developing breast cancer, there are quite a few studies that have shown this and the International Agency for Research on Cancer has now listed it as a known carcinogen.
http://www.nbcnews.com/id/8759578/ns/health-womens_health/t/hormone-pills-added-list-carcinogens/#.VrFeIVMrJ8c
There are a ton of other things that could have caused my cancer, some I will probably touch on in a later post but for now, I will leave you with this really interesting video of Wendy Mesley who is a Canadian journalist that was diagnosed with breast cancer. It is from 2006 but in it she asks a lot of the same questions I am asking today that we still don't have answers for. There is one part where she says "at what point do you stop looking for the easy answers like 'eat your veggies' and tackle the more complicated issue of all the carcinogens that we are eating and breathing and drinking every day?" I couldn't agree more!
http://www.cbc.ca/marketplace/episodes/archives/chasing-the-cancer-answer
Wednesday, 3 February 2016
Radioactive
I began radiation recently and again, had to call the hospital and follow up multiple times regarding the start date. Based on some studies I have read (click here for an example), the optimal time to start radiation is within 6 weeks after surgery. For some women who get an infection or have complications after surgery, this is not possible, however, I was healing well and had no issues so couldn't understand what was taking so long. After speaking with the Radiologist, they corrected me that the optimal window is actually 12 weeks but why wait that long? In my mind, sooner is better so after a couple calls, I started radiation 7 weeks after surgery. I write about this because it is just another example of why it is so important to be your own advocate. Yes, it may be uncomfortable to be "pushy" with the doctor, you definitely already have enough to deal with and it may be exhausting to follow up every day but this is your health and it is worth it.
The other thing I wanted to write about is Mepitel film which can prevent or at least reduce radiotherapy skin reactions. It is a breathable dressing that is applied to the area being treated which in my case is the breast and armpit. You wear it all day every day for the full course of radiation which can be annoying, especially if you live somewhere with warm weather as it is hard to cover up. I have been showering and working out with it on and haven't had any problems other than patches peeling off so the radiation technicians replace them. My view was that if the claims are correct and it reduces skin reactions by 80-90%, it was worth the inconvenience and cost (approximately $200-$300 for the full course of radiation depending on how much film is needed). I spoke to a few women that used it and either had no skin reaction or it was very mild. If you are interested and want to ask your Radiologist about it, here is the study that was done: http://www.molnlycke.com/news-media/wound-care/mepitel-film-prevents-radiotherapy-skin-reaction/. It is still considered experimental at this point although from what I understand, women in Europe have been using it for years. My Radiologist ensured me that it did not affect the effectiveness of the radiation so why not give it is try.
I haven't completed radiation yet so cannot comment on the end result but so far so good. I will post an update later!
The other thing I wanted to write about is Mepitel film which can prevent or at least reduce radiotherapy skin reactions. It is a breathable dressing that is applied to the area being treated which in my case is the breast and armpit. You wear it all day every day for the full course of radiation which can be annoying, especially if you live somewhere with warm weather as it is hard to cover up. I have been showering and working out with it on and haven't had any problems other than patches peeling off so the radiation technicians replace them. My view was that if the claims are correct and it reduces skin reactions by 80-90%, it was worth the inconvenience and cost (approximately $200-$300 for the full course of radiation depending on how much film is needed). I spoke to a few women that used it and either had no skin reaction or it was very mild. If you are interested and want to ask your Radiologist about it, here is the study that was done: http://www.molnlycke.com/news-media/wound-care/mepitel-film-prevents-radiotherapy-skin-reaction/. It is still considered experimental at this point although from what I understand, women in Europe have been using it for years. My Radiologist ensured me that it did not affect the effectiveness of the radiation so why not give it is try.
I haven't completed radiation yet so cannot comment on the end result but so far so good. I will post an update later!
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