What's New With Me

Hello Friends.  I am sorry I have been a little MIA. I know some of you are starting to get a little worried, but in this case, no news is good news ;o).  Today is a very snowy day here in Maryland, and I am making myself stop and write a little update while Charly is napping, and Steve is out shoveling snow!!

I am doing great post-surgery.  I have pretty much resumed all activities and can pick up Char with ease.  I can always gauge how strong I am when I pick her up, since she is constantly getting heavier.  I still have some pain and pulling on the right side, but I try to listen to my body and take it easy when needed.  I started doing a little yoga, which I love and am so happy to be able to get some good stretching in, but again I have to take it a little easy on that one side.  I am always cautious of what side I am lifting on and try to limit how heavy things are on the right side.  The last few months have been the normal holiday craziness I am sure most of you can relate to.  We had a great holiday with family and friends.  We are doing normal parenting stuff having a two year old with potty training, swimming lessons, etc.

All my follow-up appointments have gone well.  I started Tamoxifen on 1/11/13, so I have officially completed my first full year (with a little break for surgery).  Only nine more, yes nine more, years to go!!!  The hot flashes started a few months ago.  Most of mine happen in the middle of the night with night sweats.  They seem to be stronger and more often around the time of month when my hormones are higher.  Drinking wine also seems to trigger these nasty little disturbances.  If it keeps my cancer from recurring, I will gladly endure the hot flashes.   

My thyroid is still having some trouble getting jumpstarted.   I am on my forth regiment of synthroid, and each time a little increase or decrease is needed.  I am hoping this is just a temporary issue, but with the radiation I had done to the lymph nodes in my neck, this may be something I struggle with for a long time.  I think I am due for another adjustment.  I have been really tired and feel a little run down.  I have a follow-up in a couple of weeks for some blood work.

I have been trying really hard to eat healthy and really limit the amount of processed foods we eat.  It is definitely challenging when life gets busy.  Eating fresh fruits and veggies take dedication, work, and frequent trips to the grocery store.  But, boy can I tell a difference when I am not getting a high level of veggies every day.  Steve and I have been doing a 21 day cleanse where we eliminate all processed foods, animal products, and gluten.  We already try to limit animal products and eat a lot of fresh veggies and grains, but the cleanse gives us a little jumpstart after the holidays.  Meat is something that Steve struggles with giving up, while I rarely miss it.  But, I am only human and sometimes I get a craving for a good organic burger or movie theater popcorn.  If I am not feeling well or am tired, the cravings seem to be stronger, and I can’t always resist the temptation.  Everyone asks me how I get Steve to give up meat and do a cleanse.  I should add that while he will do it, it’s not done silently, and he reminds me on a regular basis how much he misses meat and cheese.  I always say it must have been watching me go through chemo while being sick and bald that gives me a certain level of persuasion.  In reality, it probably has more to do with me harassing him and not wanting to hear my lecture when he is eating something I disapprove of.  A happy wife equals a happy life right?!?  Moderation is a word I hear a lot of people say.  Especially when I am talking about why I don’t eat fast food or drink soda.  A lot of people say it’s all about moderation.  But, what does that really mean?  To me, moderation might mean I eat something once every three months.  Whereas someone else might think eating this same thing once a week or once a day is moderation.  Everyone has a different definition of what moderation means to them.  I think we each have to come to terms with what is really good for our health and not everyone is ready to hear about why something they enjoy is not so good for them.   

What’s next in my journey you might ask?  I need to decide what I am doing about my ovaries.  The opinions seem divided on the pros and cons related to removing them for prevention of both a recurrence and ovarian cancer.  There is a really interesting study taking place at Hopkins that I would be a candidate for.  Some new studies show that ovarian cancer may originate in the fallopian tubes and then spread to the ovaries.  For high risk patients, they are removing the tubes and leaving the ovary function.  This would be a really great alternative since I would not have to deal with the added full blown menopause symptoms.  If I opted to go down this road, it would just be a temporary precaution, and they still recommend I have the ovaries removed around 40, which will be in 2021.  The removal of the tubes is done laparoscopically and is a very minor procedure.  The doctor I talked to is fantastic, and I really liked her a lot.  Part of the study would involve monitoring during the period between tubes and ovary removal, and I would continue to have a pelvic ultrasound every six months.  I still need to think about this and decide how I want to proceed.  That's all I've got for the moment.

 If you are in Maryland, enjoy this beautiful snow day and be safe.

Research Studies (Metformin and Longitudinal Database)

I have been asked to participate in two research studies being done at Hopkins.

1. Phase III - Randomized Trial of Metformin vs Placebo on Recurrence and Survival of Early Stage Breast Cancer - I stopped this study in April 2013 after I continued to lose weight and was unable to maintain a normal level.  I will no longer be participating in this study.  

This study will help determine whether Metformin can decrease, or affect, the ability of breast cancer cells to grow and whether this drug will work with Tamoxifen to keep cancer from recurring.  Metformin is currently being used to treat diabetes.  This study will help determine if it is better to receive Metformin with usual treatments of breast cancer.  Half the participants in this study will receive Metformin in addition to other treatments, while the other half will receive a placebo.  Previous studies of Metformin have shown that it may decrease the growth of different types of cancer cells.  Meformin lowers the level of insulin, a hormone found in the blood that can be associated with worse breast cancer outcomes.  In addition to taking Metformin, blood samples are also taken at specified times during the study.  This is a double-blind study, meaning that neither myself or my doctors will know if I am taking Metformin or a placebo.

• Common side effects (likely)
• Diarrhea
• Nausea
• Vomiting
• Abdominal bloating
• Gas
• Loss of appetite
• Less likely
• Loss of taste or metallic tastes
• Minorweight loss
• Reduced appetite
• Rarely
• Rash, redness, or itchiness
• Decrease of B12
• Anemia
• Inflammation of the liver

I will start taking either the Metformin or the placebo on 1/11 when I start taking Tamoxifen.

      2. Breast Cancer Program Hormone Therapy Longitudinal Database

This study is being done to learn more about the side effects of breast cancer hormone therapy and if a person's genetic information may help to develop a way to predict the side effects a patient may have and how best to treat them.  It will also help the researchers to look at how the side effects of hormone therapy influences a participants willingness to continue hormonal treatments.

I will be filling out questionnaires periodically that will ask spesific questions about how I am feeling, if I am taking the medication regularly, and any changes to my medication list.  I completed a base line and will fill out one at 3, 6 and 12 months.  This is all computerized, so I will be able to see what has changed and it will highlight things that are out of range.  My oncologist and myself will have access to the results, and they can be used to facilitate conversation about any issues I am having.

Tamoxifen 101

Some types of breast cancer need estrogen in order to grow.  These cancers have receptors, or sites, to where estrogen attaches, promoting cancer growth.  These are known as estrogen receptor-positive cancers.  Tamoxifen blocks the estrogen from binding to these receptors, preventing the breast cancer from growing.  For women with estrogen receptor-positive breast cancer (like mine), taking Tamoxifen for 5 years greatly reduces the rick of recurrence and the risk of dying from breast cancer.  Tamoxifen can reduce the chance of getting breast cancer by nearly 50% in women who are at higher risk.

Like with all medicines, this one comes with a long list of potential side effects.  Below are some of them.  

• Common
• Hot flashes (whats new - my special friend for the past 6 months)
• Vaginal dryness or discharge
• Mild nausea
• Weight gain/loss
• Bone pain
• Dizziness
• Less Common
• Risk of blood clot in the lungs or the major veins of the legs
• Uterine cancer
• Eye problems

There was a recent study that 10 years of tamoxifen is better then 5 years.  study-ten-years-of-tamoxifen-better-than-five.  I discussed this with my oncologist who said that the recommendation to continue for an additional 5 years will be on a case-by-case basis.  For me it's really too early to say how long I will be taking this.  The possibility of having my ovaries removed in the next 5 years would change the duration, since I would replace Tamoxifen with a different (post menopause) hormone therapy.

Most of the women I have talked to about Tamoxifen all say they hate it.  Hopefully, my side effects will be minimal.

I will be starting this on 1/11/13.