Wednesday, December 1, 2010

My Treatment Plan

So today was my visit with the oncologist to go over everything. It was nice to finally hear what the plan is so that I can prepare and just know when this is getting started (probably 10-14 days). I am officially a Stage 2B, the B has to do with the tumor size. Some people were surprised that I have to do chemo because my other lymph nodes were clear and the sentinel lymph node was removed. The reason is that the lymphatic system pumps fluid through your body to clean out invaders, so whatever is in the lymph has potential to go elsewhere in my body. Since cancer (and only a small amount) was in the lymph it could have gone elsewhere, but we are declaring that it DID NOT! IV chemo is systematic and goes throughout your body, which means that it should kill any "rouge cells." Also, even without the lymph node being positive, they would still do chemo because of my age and the aggressiveness of the cancer. Better safe than sorry kind of thing. Recurrence is not any fun, so the plan is to eliminate the possibility as much as possible.

So the chemo they choose is dependent on the cancer markers. Like we have said before, my cancer is HR/2 neu positive, which means that there is a protein in my body that feeds a cancer gene and allows it to keep growing. This is the aggressive part of my cancer and on a scale of 1-3 in severity, I am a 3. Another tumor marker is estrogen receptor positive, which means estrogen presence fuels the cancer growth. It is considered weakly estrogen positive, which is good, but they still want to stop my body from producing estrogen for a while.

One part of my treatment is IV chemo. My surgeon put a port just below my collarbone that is accessed with a needle every time I go in. This lets the drugs go right to the central part of my body, rather than through a vein in my arm which can be both uncomfortable and cumbersome (especially every three weeks). I will be going in every three weeks for 6 treatments, which will be a total of 18 weeks. I will receive two therapies. One is called Carboplatin, the other is called Taxotere. These are the typical "harsh" chemo drugs that make your hair fall out, make you feel tired, and can make you feel sick. In addition to that, I will receive what is called a targeted therapy for the HR/2 neu marker. A targeted therapy means the drugs go after the specific tumor marker and won't kill all the fast growing cells (hair, blood cells, etc). This is where the research trial comes into play.

I am eligible for a research trial specifically for my diagnosis. The only way that it differs from what the doctor would treat me with normally is the part that deals with the HR2/neu factor. Most women are treated with a drug called Herceptin which is very effective at treating this kind of cancer marker. Some research shows that younger women may do better with a drug that is called Tykerb, I have actually done my own reading about it and apparently in other trials it has been a good alternative without some of the potential cardiovascular side effects that Herceptin might have. So...I am going to sign up for this trial and they will send my pathology to the board of research for approval which takes about a week. If I am approved I will start soon after that, if not, I will start treatment using Herceptin. Being part of the research trial doesn't mean I will definitely get the new drug. 25% get just Herceptin, 25% get a combo of both, 25% get a different combo of both, and the last 25% get only the new drug. My doctor assured me that this treatment would always be just as good if not better that what I would do anyway. Another reason why I am doing this is that without research participation, they cannot make progress with research. In a way I am helping my own cause and the cause of future generations by participating, and that feels like the right thing to do. I will need either Herceptin through the IV with or without a combination of the clinical drug in pill form every three weeks for a year. Like I said before, this is much more mild than traditional chemo.

Last but not least I will be taking a drug called Tamoxifen which is a pill for 5 years. This drug stops you from producing estrogen so that any "rouge cells" will not get the fuel they need to grow. The good side is stopping cancer of course, the bad side is menopausal symptoms for that time.  Some women have no problems and others do.

Monday I was in Rochester seeing a very knowledgeable and experienced doctor who practices naturopathic and traditional medicine. She is very familiar with all of the chemo treatments and has tons of experience with cancer patients. She talked to me about nutrition during this and gave me supplements to help me stay healthy and detox some of the yucky chemo stuff. Not only that, one supplement in particular detoxes and makes the chemo more effective! This is all cool with my oncologist as well. Hopefully it will help me stay as healthy as possible. I am also looking into acupuncture which for some unknown reason is very effective in treating the fatigue and nausea that chemo patients experience. I am very excited about how these alternative therapies are going to help me to feel as good as I can for my family and myself!

The next major hurdle that we are praying about is telling the kids about all the treatment stuff. I know shaving the head has the potential of being pretty weird and scary. Thanks to the Smees for sending the amazing books! Another plan that a friend told me about is another mom had her kids cut her hair and her husband shaved her head. She told the kids to just have fun and cut different shapes. I think this will make it less scary and more fun. I am also going to buy them some fun kids fabric and let them make their own bandannas to wear with me. I am hoping this helps, but prayers are welcome!!  

Well hopefully I covered it all. It is a lot to swallow and we do have a trying time ahead of us. So once again, thanks for all of your support! Thanks to all of you who are making delicious meals for us! It is so nice and on those days that I am feeling pretty gross, it is going to be nice to just pull something out of the freezer! We really appreciate it! Thanks to everyone who have been willing to watch our kids. They are having so much fun and getting so spoiled that I think they are going to handle the chemo news well.  We are looking up and trusting God to continue to use this all of good, just as He has already!

18 comments:

  1. I love that you have a naturopath working in conjuction with traditional medicine! We will continue to pray that things transition smoothly for you and Nate and the kiddos and God leads and guides and strengthens you every step of the way,
    Hannah

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  2. Allison, It is amazing the amount of knowledge you have gained in such a short time. My sister had a similar diagnosis and similar treatment. Also, she had three children ages 14 12 and I think Justin was 10. She read about different age groups (especially young daughters in puberty) and fears they might have and how to handle them. I think Beth went to a beautician to match the wig. I was able to sit with my sister's girls and encourage them to pick out wigs. We all ordered a wig. It was fun. I know you will probably pick scarfs to wear and I can see Emma loving her own scarf for her head. Maybe Lexy will like wearing one too!!! By the way , you looked absolutely beautiful the other day. May this time pass swiftly. Lord be with you and you family during this time. Our Lord will carry you on his wings. He will direct you and give the right words for the kids during this time. He is faithful. You have a very wise husband. Your family is blessed. Have a wonderful night.

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  3. You have made it this far through your journey remaining so strong!! You will sail through this next part I have no questions! You have an amazing attitude and equally amazing support system! Anything, Anytime...just a phone call away!

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  4. Pat- I do have a script for a wig! I will probably go soon, so much to do! I have my scans next week, I still have to go to the ACS to do the "look good feel better" class, I have amazing neighbors to catch up with, Christmas stuff! Glad that I have all of these positive things to keep me busy until treatment starts!

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  5. You're inspiring! If you need help with anything or feel like doing a craft, you know who to call!! :) Love you!

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  6. As usual it's good to get an update. Knowledge is power and I'm glad you're going with the research. That's how so many of the cancer drugs in particular have been approved. Good for you to try and pay it forward.
    Some suggestions for you while you're receiving your chemo. Cards. A laptop to either watch a movie or play a game. Any crafty type project you might be working on. Anything to help you pass the time and keep your mind off what's going on.
    Since you'll be on the tamoxifin, the acupuncture will also help with the menopausal side effects such as hot flashes. I've read where it works even better than taking the anti-depressant Effexor. (Which I'm on for my hot flashes) Whoda thunk that a side effect of taking a mild anti-depressant was dissapating hot flashes? I only take it at night in a time release capsule. Very mild. But it works and I don't have to worry about estrogen. Since that's a no-no for me now as well. But I am getting an appt. for acupuncture. Nutrition during this is very important, too. Glad you met with someone about that.
    Keep on fighting. His grace is sufficient. Continued prayers for you guys.
    Dee

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  7. Allison, KNow you check your blogs so just wanted to say how nice the kids were the other day. We played games and enjoyed my husbands homemade pizza. You are handling the kids great through prayers ect. They seem so happy ect. Keep up the fantastic work. Your support systems must be fantastic. You are all in my Prayers.

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  8. Dee- thanks for all of the great information! Those are great ideas.
    Pat- thank you for taking them! It gave my mom a break and they LOVE being with you :-)

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  9. Beth (Pat's sister)December 3, 2010 at 7:34 PM

    It is nice to hear how well informed you are! If you can make this time more predictable, you will reduce stress. I have done Herceptin and Tamoxifen without problems. I am a four-year survivor with no evidence of disease. Pat tells me how strong you have been. I am so sorry you have to go through all this. Please let me know if I can help you in any way. I am thinking of you and Pat just taught me how to figure this blog out. I am not usually a blogger. Bestwishes. Beth

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  10. Beth- I have been so encouraged and inspired by your story! Yes- I like to know everything possible- to a fault I am sure...but I am confident in my docs and am ready to do this!

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  11. Yeah, what are older sisters for!!!!I was glad to help Beth out with the blog. She needed to just press the #of comments and the box would pop up. Then, I had her sign in under the profile of name and then press post comment. Hope nobody else is having problems.

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  12. Thanks for sharing your Inspired journey. Sending prayers from Rochester.
    "If God sends us on strong paths, He provides us with strong shoes."
    ~Corrie TenBoom

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  13. Allison, We went to high school together (I think I was a year ahead of you). I found your blog from Hannah's. I just want you to know that I am thinking of you and your beautiful family and sending lots of good wishes your way. You are so inspiring and strong.

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  14. So glad you have a plan and that your doctors are all playing together nicely. :D You'll sail through with flying colors, I just know it. Love.

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  15. Hey Allison,
    Becky just came back from Bethlehem,PA. It is considered the Christmas City of U.S.A. It was a four hour drive. She had a wonderful horse and buggy ride. She came home with beautiful personalized ornaments. You probably have limited recreation time now;but, if you can squeeze in a trip, you would love that one. Stay warm neighbor.

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  16. Good read. Thank you for being so candid about your treatment. Even as a nurse i don't always understand it all...you are doing a great job of grasping it, owning it and sharing it! Keep it up.

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  17. Beth (Pat's sister)December 8, 2010 at 9:47 AM

    I was just talking to Pat about Lymphedema gloves and sleeves. Yes, I got a set right after my bilateral mastectomy because I had 18 lymph nodes removed. I have to tell you that I was a little nervous about the lymphedema in the beginning. Thankfully, I have NEVER had a problem. Additionally, none of the survivors I know have ever had a problem. You will need to use the glove when you fly just in case. I have worn mine two or three times. The first time I mowed, after an overzelous workout, and after gardening. The most important thing is no needle sticks, blood pressure cuffs or restricting things on that arm (plastic bag handles). I think the risk is very slight. It is nice to have the sleeve on hand to prevent any problems. It is nice that insurance covers the cost. I still have my original pair. Remember to have a red warning bracelet put on that arm during any future surgeries so that noone accidentally uses that arm. I wish you continued success with your treatment. Please know that one day you will not think about BC everyday!

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  18. Beth,
    Press home at the top of the page. That will place you at the updated blog. I let Allison know you left her a message:but, I gave her the wrong blog information for your message. It was good seeing you. Love you lots sister

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