5 replies to this topic

[grannyd]

Hi, Happy Easter to everyone! I had my first PCR test Tuesday at Cleveland Clinic. Dr. Advani was pleased with all my counts and said I was in the CHR, which I was very happy to hear!! She said she would send me my reports and since this is still so new to me, I was wanting to know when I would get the report as I forgot to ask her? Also, if she has to wait for them to read them, how does she know if the TASIGNA is working? All of my BW have been in normal range since my 3rd week on TASIGNA and have been doing well with side effects.I have been on it since Feb. 1st, as my insurance had denied for a while.I had my first BMB December 28th, she said I will need another one in the near furure, anyone know about when I should be getting it done again? I know these are really stupid questions, I ask her alot of questions I had written but never thought of these until i got home. Thanks to anyone who may know! Prayers to all, grannyd

[jrsboo]

That all sounds very encouraging.  I believe the "normal" protocol is to do a PCR every 3 months for a while, and a BMB at the six month mark, and if it comes back at the right levels (don't know exactly what that is), then you don't need one for 2 years.

I carry a notebook with me to both ask questions and then write down the answers, I also take a husband (mine of course) who is good at remembering things too.  It is VERY helpful to have someone with you to "hear" the answers, as you will not be able to take it all in.  If a husband is not available, you should take a good (smart) friend.

Caroline

[Trey]

CHR is shown by the CBC alone.  The CBC gives a limited view into whether the drug is initially working, but does not show enough information to draw any real conclusions.  The FISH or PCR will show the real story.

The BMB should be done at diagnosis, and generally at the 6 month and 12 month points unless the response is very rapid.  Certainly after MMR (3 log reduction) the BMB is no longer needed, and maybe even before that.  After 12 months it depends on the level of response, whether there were high risk factors, or any loss of response.

[grannyd]

Thank you for responding so quickly, Trey you are such an open book of knowledge, & for that I thank you. Finally getting over the shock of having this, now trying to learn about it. It has been hard with my anxiety & depression to really let some of the information sink in. Thanks to everyone who post their journey, it helps to know how others are dealing with issues. Prayers to all, grannyd 

[Marnie]

Happy Easter, Grannyd!!

Congratulations on your excellent test results so far!

I always write down my questions on the computer as they come to me between visits.  I start my list the second I get back from a doctor's visit and think of all the things I forgot to ask.  I add to my list as I think of things, and then a couple of nights before my next visit, I read through the list and add last minute questions.   I have a folder on my computer labeled "Questions for the doc" and I have my lists labeled by date.  It's a system that works well for me.  Sometimes I feel stupid asking my questions, but I figure I'm paying him for his time (and I'm paying him quite a lot!!) so I might as well make good use of the time I have with him.

I'm coming up on 2 years now, and have only had a BMB at diagnosis.  I suppose it's time for another, especially since I've switched medications since Gleevec wasn't working very effectively for me.  My doc feels pretty strongly that BMBs aren't as necessary as the NCCN guidelines specify.  However, I've been pretty stressed out lately since my response plateaued (is that spelled correctly??), so I guess it's time to insist on a second one.   Your PCR tests will be your main indicator of how well Tasigna is working for you, so be sure that you have those done regularly.  Typically that means every 3 months.

On my list of questions, I always write a note at the bottom to get a copy of all test results.  That way I don't forget.  If I do forget, I'll call the office and either have them fax a copy to me, or I'll drive across town for it.  After my blood is drawn for the PCR test, I'll wait for about 5 days and then call daily until the results are in, and the nurse can read them to me over the phone.  That way I've had time to think things through before I meet with my oncologist to go over the results.  I don't think so well on my feet, so I really prefer to know the results ahead of time.

I always wait for the CBC results after the blood's been drawn.  It usually takes about 10 minutes.  You have a legal right to a copy of all test results, and it's important that you keep track of your own progress.  I have a 3-ring notebook divided into sections, one of which is "blood test results."  I also track all results in a spreadsheet on my computer.  You can make some pretty neat graphs that way!!  (yeah, yeah. . .bet you couldn't tell I'm a math teacher, and a bit of a numbers geek).

Don't ever think that your questions are stupid.  I'm a teacher by trade, and I always tell my kids not to be afraid to ask questions, because if they have a question, they can be sure that at least 5 other people want to know the same thing, but are afraid to ask.  That's true on this forum, as well.  Lot's of folks looking for answers, and some people don't even know what questions they have.

Marnie

[grannyd]

Hi Marnie, thanks for all the advise!! I did write questions & made a list, but didn't think of these things until after I got home. I also wait on my BW sheets & have them all in a folder. I posted before about my white count, it had been 5.7 for a couple of times now it is staying about 7, so I just figured that it might go up & down for a while. My husband always goes with me to Cleveland, I wouldn't drive there myself in the first place!! We live outside of a small town in the country, I don't handle traffic real well. He is so good about all this, and he even asks questions that I forget!!! He & my youngest son have polycythemia, which is a blood disease,I was hoping it was what I had when my BW was off. He goes to the same onc as I do so we kind of have a family day once in a while!!! Same day appts. So glad to hear you are coming up on 2 years, CONGRATS!!! I am starting to be a little less anxious as when I was first diagnosed, it sure takes time though!! As I said before, things that people post are just now starting to make sence to me, alot to take in, & still sooooo much more to learn!! Keep posting as I try to read & catch up to date. Thanks again my friend, prayers to all, grannyd