Monday, October 4, 2010

How Kim kicks off breast cancer awareness month...

It's somewhat ironic that I would be kicking off breast cancer awareness month with the start of new chemo. Here is an update on what's been going on with me.

This week I had my repeat CT scans, ultrasound, and tumor marker levels done to evaluate the effectiveness of Faslodex injections, which I've been on for about 8-10 weeks. What I already knew before this week was that the tumors that have been palpable on my left back have grown. In addition to feeling them with my fingers, I can now "feel" them when I lay down or when I sit with my back against a chair, seat or sofa. Also I've had a mild cough that seems to be elicited by my turning onto my left side. And lastly, I have been frequently failing my own "lung test," which I have been doing regularly ever since I was originally diagnosed with metastatic breast cancer in 2006. (At that time, when I laid on my right side, I was unable to take a full deep breath in. I found out shortly thereafter that my left lung had a "moderate" pleural effusion, and that that lung was restricted down to about half its normal size due to the fluid buildup around it.) In the months following my diagnosis with stage IV, the treatment regimen I was put on was very effective, and all of my metastatic lesions, including the pleural effusion, cleared up. I had no further difficulty in taking in a deep breath, but I always "tested" myself just to self-monitor (I can be psycho like that!) Anyway, lately, I couldn't always get a deep breath in. It wasn't consistent, but it seemed like I had to be in just the right position to make it happen. I knew something was up, especially since I had already gotten my tumor marker results 2 weeks before my scans: they had again drifted upward, this time up from 32 to 40 (normal range is 0-38.)

Thursday was my appointment with Dr. Green to get the results from Tuesday's chest/abdomen CT, chest x-ray, ultrasound of back chest tumors, and labs. As I waited with Danny in the exam room, I told him that I did not have a good feeling about it. Unfortunately my gut feeling was right.

The ultrasound showed that the largest of the three back tumors had grown. The other two had not changed much, however, Danny and I both thought, after seeing them on the screen during the ultrasound procedure that they looked much more prominent and visible than on the first ultrasound... but what do we know?!

The CT scan of the chest showed "an enlarging left pleural effusion which is now moderate in size. The underlying pleura appears thickened, worrisome for malignant effusion with pleural metastasis." So the fluid around my lung is back, which explains my feeling of being unable to take in a deep breath. Additionally it showed enlargement of the chest (mediastinal and hilar) lymph nodes, and also a "new skeletal metastasis in T12" -- the spine. Great.

The CT scan of the abdomen showed some new lymph node enlargement in the retroperitoneal area (back of abdomen,) the same new bone mets @ T12 seen in the chest CT, and the real kicker: bilobar hepatic metastasis. I now officially have breast cancer metastasis to the liver. No longer can I say "Well at least it's not in my liver." All I can say is, THIS REALLY SUCKS!!

It was like I was punched in the gut. Dr. Green took a lot of time explaining what the new treatment plan would be, and she showed us the CT findings on the computer. The plan is now for me to discontinue all anti-hormonal therapy. No more Faslodex or Zolodex. I will continue on Zometa for the bone mets.

I will go on chemotherapy, which I haven't had since my original bc diagnosis in 2000. However, this one, Xeloda, is an oral chemotherapy agent. Great, I get to poison MYSELF, at home! I've read about it already, since Dr. Green had told me earlier that the next step would be Xeloda. I've read that it's an easy chemo, as compared to the big ones like I received 10 years ago, but it's not without side effects. I can expect some diarrhea and most likely "hand and foot syndrome" which is burning/redness/pain of the palms of the hands and soles of the feet. I will not lose my hair, thank goodness for the small things! The dosage is highly individualized. Dr. Green starts near the maximum recommended dose and will lower it gradually based on my tolerance of the side effects. I am to take 8 (gigantic) tablets a day -- 4 in am, 4 in pm. Two weeks on and 1 week off. After the first cycle, I will see Dr. Green to discuss side effects and possibly change the dose. After the second cycle (in 6 weeks,) I will be re-scanned and re-labbed to evaluate effectiveness.

Dr. Green also wants to add Avastin, another chemo drug, to my new treatment regimen. The FDA has recently decided to remove Avastin from the market, which has started a whirlwind of controversy among breast cancer patients who are taking it and having positive outcomes. I can only imagine being on a drug that's working and then having the government step in and say No, You can't have this anymore! The FDA's decision was to be made any day now, so Dr. Green wanted to wait before scheduling my infusion to make sure that they weren't going to pull it. Their decision turned out to be to postpone their decision until December. This is good for me! I am now scheduled to receive my first dose of Avastin at my 3-week checkup.

Avastin is given IV, and it also doesn't cause hair loss. It's not that I'm afraid to lose my hair. It's just that without hair, one truly LOOKS like a cancer patient to rest of the world. Right now, unless I tell people, no one has a clue that I am battling stage IV cancer!

I read some of Avastin's literature tonight, and I must say, I am scared to death! Nosebleeds, headache, high blood pressure, inflammation of the nose, too much protein in the urine, taste change, dry skin, rectal bleeding, tear production disorder, back pain, and inflammation of the skin are the most common side effects. One serious potential side effect is GI tract perforation!! Oh. My. God. If the cancer doesn't kill me, maybe the treatment will!

I pray that I have no serious side effects, and that these drugs will stop the progression of my cancer. Lord, please help me through this. My biggest fear is that something bad will happen, suddenly, and that my life will be abruptly changed for the worse. At least the cancer hasn't spread to my brain...

5 comments:

  1. Remember O most gracious Virgin Mary
    that never was it known
    that anyone who fled to thy protection, implored thy help or sought thy intercession was left unaided.
    Inspired by this confidence I fly to thee O virgin of virgins, my mother.
    To thee I come, before thee I stand, sinful and sorrowful.
    O Mother of the Word incarnate, despise not my petition but in they mercy hear and answer me. Amen.

    Kim, you have helped me. I am praying for you.
    Linda Johnson
    Homewood, IL

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  2. Hi Kim. My name is Dana. Your blog came up in my mom's Avastin google alert and she thought it might be helpful if I commented about your Avastin concerns.

    I have Stage IV BC - mets to lymph nodes and liver. I've been on Xeloda since Feb 2009 and we added Avastin in February of 2010. I have absolutely NO side effects from the Avastin except a runny nose and periodic elevated blood pressure (but not to a dangerous point - just high for me).

    My Dr. indicates that most of his patients experience Avastin as I have, so you may not have problems with it at all. I will keep my fingers crossed!

    As for Xeloda, I get fatigued a bit and I do have the hand/feet syndrome. It is totally manageable so far but I'd be lying if I said it didn't slow me down a bit. I work full time though (with flexible hours) travel and live it up for the most part.

    I, too, have been able to keep my hair so far with this new round of cancer (I had stage 2 BC in 1998, recurrence and mets diagnosed early 2008.)

    All the best to you as you move along this crazy road. I hope you are as fortunate as I have been with being able to handle Xeloda and Avastin. Of the two, I bet you'll find Xeloda to be the more challenging. Seriously, the Avastin has been a walk in the park for me.

    Do take care and hang in!
    Dana

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  3. Linda, thanks for the prayers! I need them!

    Dana, thanks for writing. I so appreciate your words of wisdom and encouragement about Xeloda and Avastin. It's a scary world out there! I've heard from a couple of people now who have said that Avastin gave them no problems at all. Music to my ears!

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  4. You are in my thoughts and prayers now more than ever. I pray for peace, comfort, & healing.
    Much love!
    Amber

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  5. So sorry to hear that the Dr.'s are still trying to figure it all out. I was stage III BC in 1999. So far so good. They were so aggresive on my treatments. I was due to take my 2nd chemo on my baby's 1st b-day. She is now 12 3/4 and I am so lucky and thankful I have been able to see my daughters grow. I hope for the best for you and all the other survivors and fighters, we can never give in. Keep the hope alive. Love another Kim

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