Friday, February 22, 2013

Ah, back to reality...

We had a great time in Kauai and I promise pictures and the story real soon.  First, a little update on me and how I am doing. 

I had a lot of nausea while on carboplatin and my reward for putting up with it was nothing good.  The tumor markers, as I mentioned earlier, are up over 1000 and the CAT scan from yesterday shows lots of progression, including into the liver.  I was sure hoping it never got to that point but this cancer is so damned aggressive and nothing, so far, seems to slow it down. 

So I am now on Gemzar (gemcitibine) - two weeks on, one week off.  I had my first treatment on Wednesday and I seem to be doing ok.  No nausea so far and I've been able to eat full meals.  After a couple cycles, we'll be checking the tumor markers to see if there is any sign of regression.  This chemo is known to be tough on blood counts, and I am already anemic so I'm sure I'll be watched closely.  My oncologist doesn't like to do transfusions, and I think I agree with her. 

In the meantime I have located a lab that will take my tissue from a fresh biopsy and perform 96 test assays to uncover a chemo that looks promising.   If the website is correct, the cost is $510, probably  not covered by insurance, but worth every penny if it comes up with the "killer chemo" that I so desperately need.

Speaking of insurance, why is it so hard for everyone to figure out that my Blue Cross Blue Shield is primary and Medicare is secondary.  The rules are clear - if your employer (or in my case my hubby's employer) has more than 50 employees, then the employer's insurance is primary.  I think this is going to be an ongoing battle and I am ready to ask BCBS for a nurse case manager to help us with this stuff.


  1. Gosh, Michelle, first of all, I'm glad you are doing that test to see which chemo would work with you. I had never even heard of it before. I'm sorry about the news, though, about it going to your liver. Not being sick to your stomach now is a blessing. I can't believe how hard they make it for patients with cancer to get things straight for insurance! This must be so taxing, and I can see why you want a nurse case manager to do this stressful work! I'm thinking about you, Michelle.

  2. Michelle, thanks for keeping us all posted. I am glad that you foun that test, and I continue to pray for your care and well-being, physically, emotionally, and spiritually!


  3. Michelle, with my mom and brother it was always an uphill battle with insurance. My brother got a case worker also. Just worth it.

    Thinking about you and hoping they find the best


  4. Michelle, I have been following your cancer journey ever since it began. I truly hate to hear your latest news. You are a strong spirited woman with a positive attitude who fights like no one I have ever known!!!I hope and pray that the Gemzar gives you remission and lower tumor markers! I have a friend here in WV that was diagnosed with liver cancer Stage III at age 44. She has been thru several chemo treatments and when she started her readings were over 1,000 too. She has taken Gemzar (I will verify for sure) for 3 1/2 mos and her marker readings are now in the normal range and the liver tumors have almost disappeared. I hate to compare people to one another but just wanted to share. Also, I just happened to be watching the NBC national news this evening and there was a report of a new Designer Drug for Breast Cancer. It is being called a Smart Bomb. The drug is called Kadcyla. I am not sure if it would be right for you but tho't I would pass this info along. I think it is for Her 2 Positive cancer. It is not a cure but a treatment to control the cancer. I can't wait to see your pics of your trip to Hawaii. I have not been there yet but it is on my bucket list. We have visited the other 49 states already. Take care and keep fighting hard!

  5. Here's praying that the Gemzar will lower your tumor markers, at least lower any more progression.

    I had the same dilemna as you have now with the insurance. I'm collecting SSDI and Medicare automatically kicks in. I was on my husband's insurance, too. That WAS primary. What didn't they get. It happened every single doctor visit. You give 'em hell next time you get asked that question. No one is doing their job.

    I worked for an optometrist. We had a software program that indicated primary and secondary insurance. It's an old program. I'm sure there are advanced software programs out there that indicate these things. Unless...they just don't want to spend the money. They just want to annoy patients to no end.

    Eat well. Keep your strength.

    Can't wait to see your photos!!!

  6. Michelle I don't know what to say, you are a very strong lady and I pray the Gemzar does the job for you.

    I would love to send you a financial gift - to help off set your need for the tissue biopsy testing can you please send me your address via my email so I can send it to you PLEASE let me help you out - that is all about I can do. Love ya Deb.

  7. Deb - it turns out that the lab I found doesn't test human tissue - it's a research lab testing facility. There are labs that test human cancer cells but they are close to $4000 and must be paid in advance. I need to do more research on this issue and have a conversation with my medical insurance company. Thank you for the offer but I'm not ready to commit - I think there is more to discover about this testing.

    Love you too!