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A hiccup in my first chemo....but lots of good news!

Saturday, August 31, 2013

Last Tuesday evening, I got a call from Vanderbilt letting me know all the details hadn't been completed in time for me to get chemo the next day if I wanted to participate in a clinical trial that is going on for triple negative stage II breast cancer. I could chose to start chemo the next day and not be in the trial or postphone my first chemo until the following week. I told them I would have to think about it and they said they would call back in the morning to see what I had decided.

Before the phone call, I had been all ready for the chemo. In fact, I wasn't even worried about the chemo. What I was worried about was the results from my bone scan and CT....I didn't know if the cancer had spread. The fact that I still qualifed for the clinical trial after those tests meant that there was no sign of the cancer spreading beyond the sentinal lymph node. I was elated at that! I was so happy about that part of the conversation that I literally cried tears of joy and relief after I hung up.

I won't go into the details of the clinical trial, they are somewhat complex. Anyhow, I calculate my odds of getting a drug that could be potentially very helpful are about 25% if I wait another week. The oncologist said it would be okay for me to wait a week if I wanted to. So....after a pretty sleepless night, I decided to wait. I figured the 25% chance was worth a shot.

Several things factored into my decision to wait another week. One factor was the 25% chance at a new drug specifically targeted to my particular type of cancer. Another factor was that the tests showed no signs of the cancer spreading. A third factor (and a pretty significant one) is that I can feel the tumor in my breast, an it doesn't feel any fact, it feels a little smaller to me.

Ever since I found out I had cancer, I've made major, MAJOR, changes in my life. I instantly cut out all sugar, salt, and any refined foods. I initially became vegan with a lot of organic juicing. About a week ago, I read about a ketogenic diet that made a lot of sense to me, so I added back in fish (sardines and wild salmon), and small amounts of organic free range beef and chicken so I'm able to get the protein I need without going over a very low carb limit. The theory behind this way of eating is that cancer cells can only get their energy from carb sources while the rest of the body can use either carbs or fat. I think cancer is more complicated than that and that some cancers can get energy from fat as depends on the mutations that have occured in the cancer cells.

Anyway...I digress from my point. My point being, that I have been doing TONS of things to try to aid my body in using it's natural defenses to clear my body of the cancer cells. Diet, meditation, exercise, yoga, and many other things. Since I couldn't feel the tumor growing, I felt like it was another indicator that it was safe to wait. Also, I wanted to give my new diet a chance to work on it's own.

Another (little) factor is that my port placement was only 5 days old at the time of my first scheduled chemo and was still very tender at the site. By waiting a week, the port site will be much less tender. I have a high pain tolerance, so this wasn't much of a factor, but it is still nice that I now have another week to recuperate before they start poking me there.

It turns out that this week's delay precipitated the need for another mammogram and ultrasound of both breasts because the clinical trial protocol wanted results that were less than 28 days old from the date of the first chemo treatment. So yesterday, I went back to Vanderbilt for more tests, including a mammo and ultrasound.

Those tests turned out to be quite enlightening for me. I asked the technician to show me the tumor on the mammogram view. I was surprised to see how small it actually is. It feels bigger than it is. I had been told that at my first visit to Vandy, but I didn't really believe that until I saw it.

I discovered while looking at one of the views, that a little marker clip that they put in while doing the biopsy (to show exactly where the biopsy was done) is actually in the exact shape of the little pink ribbons that denote breast cancer survivors.
emoticon . My eyes welled up with tears at the thoughtfulness of whoever came up with that shape for the marking clips. I feel like I now carry around a very special symbol inside of me.

The mammo technician and i also talked a lot about my "normal" mammogram from 8 months ago. One of the hallmarks of most breast cancers are calcifications. They are pretty easy to spot in a mammogram and most breast cancers that are found through mammograms particularly when they are very small have micro-calcifications that show up well....particularly with digital mammography. My kind of cancer has no calcifications and I have really dense breasts, so my kind of cancer is much harder to spot in the early stage through mammograms. Some ductal cancers don't show up at all on mammograms according to the technican. I'm a big believer in getting routine mammograms, and I had done it for years, but I now know how important it is not to think your are home free just because a mammo comes back "normal." Lumps need to be checked out.

Next, I had my ultrasound done. I had alreaded decided I was going to ask the technican to tell me exactly what size it is and how it compared to the ultrasound taken about 28 days ago. She said, "of course!" I like ultrasounds of the tumor. They seem to be very accurate, don't hurt and don't involve radiation. I wish they would do one every time i came in. Anyway, I watched as she measured it on the screen. Then she pulled up last month's report. In one view, the measurements were exactly identical. In another view, the new measurements were actually slightly smaller than in the original. I thought that was GREAT!!! That means that for the past month while all these tests have been going on, the cancer hasn't grown....and, in fact, may be starting to shrink! This is particularly awesome considering this cancer has been rated "high rate" "high grade" according to the pathology report at Vanderbilt.

It looks like all the healthy stuff I've been doing may be contributing to at least holding my ground with this cancer! I am elated at that news at this point. It gives me incentive to keep up the things I'm doing. If this ketogenic diet is going to work, it should do it fairly quickly. I had planned to do it for four weeks and then decide whether to stick with or switch back to higher carbs and use more vegetable sources of protiens.

Long story short, my decison to delay the chemo seems to make sense given I'd like to try the experimental drug.

I'm feeling a lot more optimistic as I begin to get encouraging test results. That's a wonderful feeling!

Life is good!

Hope you have a wonderful weekend.


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Member Comments About This Blog Post
  • OWL_20
    Thanks so much for the update! I love the ultrasounds--wish they would make them a standard instead of the old breast cruncher mammo machine. Mostly I love the way you have gathered information to you to be the most ready that you can be--that's wonderful! Best of luck with the chemo. emoticon
    1635 days ago
    Good morning Kay! I am glad that you made the decision to wait because it sounds like it was the right choice for you! It sounds like God is really working in this situation! I don't know if you believe in prayer, but if you do, it is working! I am glad that you are doing things on your own to make your body healthier! Hang in there! I have never been through cancer, but you sound like a really strong woman! I know your going to make it through this! God bless you! emoticon emoticon emoticon emoticon
    1635 days ago
    I'm amazed at how attuned you are with your body. You knew the tumor was a little smaller, and science backed it up! Kudos for your diet, which seems to really be working well for you.

    Hang in there!

    1635 days ago
    Sounds like you made the right decision for you. Prayers and hugs as you get through this.
    1635 days ago
    Good morning Kay, glad that you had a good appointment.
    I am still keeping you in my thoughts and prayers.
    I am behind you 100% and believe that you'll beat this thing.
    My mom and grandmother are both cancer survivors.
    (Not breast but of the lower kind. Can't remember what right now).
    I hope that you have a good day and a great Labor Day.
    Will send you your first card/letter Tuesday through the mail.
    Have a great one! Your friend in Fitness, Holly emoticon
    1635 days ago
    Wonderful news!!
    1636 days ago
    Well.....there's aren't any adjectives left that haven't been used to describe the tremendous way you are managing this situation.

    So I will just have to say ditto, ditto, ditto! And throw in a huge hug and one more SP friend who is riding down the road with you ...every step of the way! Thanks so much for keeping in the're very generous to include me! emoticon emoticon
    1636 days ago

    Being pro-active in your own defense whether it is diet or whatever else,
    I think you are on the right track. The healthy eating is of great benefit
    to your health, so it stands to reason it would benefit even more in this

    I will continue to pray for you. You inspire more people than you know
    with your blogs.

    1636 days ago
  • MICHELE142

    emoticon and great experience you will have with that clinical trial and the knowledge you will have available. Stay focused and Positive as your currently are. Blessings out to you!

    1636 days ago
    Oh, Kay, I am rejoicing with you! In my opinion, you are doing the right things in being your own advocate. You are reading up, making life changes based on what you are learning, and being pro active in deciphering test results. Your positive attitude is contagious!
    1636 days ago

    Comment edited on: 8/31/2013 5:45:27 PM
    I think you've made the right decision and your news is sounding good. Wishing you continued good news and health! emoticon
    1636 days ago
    I have just finished treatment for breast cancer, here in sunny Scotland, and whilst I'm not feeling well yet, I feel much better. Like you I have made substantial changes to my life, and I would definately encourage you to keep going with this step if you can. Well done on doing all the research and coming up with an action plan - it will help you to keep going even if you don't feel like it.
    Re; the little clips - like you I was delighted that they used these little ribbons on all of my tumours, and REALLY upset when they removed them during the surgeries that I had to have. There was something really lovely about having the ribbons with me all the time.
    Lots of love and hugs and many good wishes to you for the treatment - I hope you keep and stay well throughout! emoticon emoticon emoticon
    1636 days ago
    I'm glad to hear that things are going well for you, I'm keeping you in my prayers...........

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    1636 days ago
    Have you checked out the Hippocrates institute in Florida. It's a natural raw food type juicing and other natural treatments for healing different issues. It's just an idea. I have no idea as what will work best for your treatments, just throwing out another idea. Your in my prayers. emoticon
    1636 days ago
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    1636 days ago
    So very happy to hear of this good news. You are awesome, strong, and doing all the right things. Sending lots of love your way!
    1636 days ago
    Wishing you health and happiness.
    1636 days ago
  • GYMRAT54
    I couldn't read your blog fast enough! I was getting more and more excited and happy for you that I was clapping fast claps after every piece of good news! To read that your tumor has not grown but has shrunk is absolutely THE best news! I couldn't be more happier for you!! Your determination and diligence in watching your diet and staying on top of what to do and ask the medical team is amazing! You have no idea how inspiring you are to me! I look forward to reading your updates. emoticon emoticon emoticon emoticon emoticon emoticon emoticon emoticon
    1636 days ago
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    1636 days ago
    You are so wise to be as well informed as you can be and do all that is possible to address any issues within your own power. Praying for complete recovery for you.
    1636 days ago
    ... good news!... Diet means a lot. My oncologist showed me a study regarding the correlation between breast cancer and diet. The closer you are to your normal BMI, the less chance of a recurrence. Sugar is definitely a link.

    You are doing all the right things and staying on top of it all!

    Good luck to you! emoticon emoticon
    1636 days ago
    OH I wish I could just HUG YOU, soft gentle hugs but here you go emoticon HOw elated I am just to know it hasn't spread, that it is smaller and that all these healthy things are working!!! I am sure they are.
    I so hope that things continue in this vein and you know I too think it was a good decision to wait. I am envious of your high pain tolerance!!! mine is so low, pinch me and I hurt. Terrified of needles... and dr said with my new diagnosis of fibro also that can make me more sensitive to pain geesh thanks lol
    I LOVE the book about being sick. I wrote a bit in my blog and also sent the link for your blog about it to 2 spark friends who have chronic pain. Even the foreward has things that resonate with me.
    HUGS and have a good long weekend. So glad you found out and can semi rest and relax.
    Cindy emoticon emoticon
    1636 days ago
    That is such good news about not having spread to your bones. And that you are taking such good care of yourself, Kay. Big hug.
    1636 days ago
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    1636 days ago
    So much good news!
    emoticon emoticon
    1636 days ago
    what wonderful news for you!
    1636 days ago
    How heartening to hear this good news. AND most important...remember the power of your beautiful brain! I would absolutely completely indoctrinate that beautiful mass with the fact that you are 100% getting the treatment that you need that will help you. No thoughts of 25% are getting the REAL deal. I also absolutely KNOW that everything you are doing to support yourself holistically is helping you big time! Our brains are EVER so powerful, and our nutrition and our mental capacity all play into our health. You are an amazing and brilliant woman are logical, rational, creative, and confident! You are just undergoing a little life test now that will make you even better than before!

    I'm wrapping you in the white light of health and happiness. I adore you dear friend! You've GOT've got it in the health bag!

    Hugs, hugs, and MORE hugs!

    Bobbi Anne emoticon emoticon emoticon
    1636 days ago
    Lots of positives for you!! I am so happy to hear them. It is fabulous that you are doing so much research and being proactive regarding your treatment. Sending you lots of positive vibes, my friend! emoticon
    1636 days ago
    As a fellow BC survivor, I applaud your decisions to take your health in your own hands. I did some of the same things and also reached out to my network of family/friends, accepted their encouragement and especially prayers. Those things are really so important both in your recovery and in your mental well being. Good job and I hope for the very best for you. I'm now almost 5 years out and I attribute my mental attitude with a lot of my recovery.
    1636 days ago
    Things are looking brighter my friend. I think you made the right decision with going with the clinical trial. Good luck! emoticon
    1636 days ago
    Life is good, indeed! Glad I was online to get the latest. Your decision to wait sounds like it was definitely the right one for you. I continue to admire your strength and wisdom in facing this challenge...prayers and hugs, Michelle
    1636 days ago
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