112 replies to this topic

[gerry]

Also from reading Trey's blog I'm wondering why I have not had the bm biopsy. I really need to stop thinking tonight :/

 Hi Tiffany - seems some docs don't do BMBs, blood work tells them that it is CML. If you don't respond as you should I would think they will do one then. We have a few members here who haven't had one and probably a few members who wished they never had one from the discomfort they had with it.

 

Don't worry about being consumed by it, we all start out that way. With luck your results will keep better as the TKI works and real life starts to take over again. 

[Trey]

Tiffany,

 

Regarding no Bone Marrow Biopsy, a BMB is very important for proper diagnosis.  It shows things that no other test can show.  They are not fun, but I would definitely want to have one done.

 

To be diagnosed you would need to have at a minimum one of the following, and preferably all of them: 1) BMB, 2) FISH, 3) PCR.  Were any of these done? 

 

Testing info if you did not already read this:

http://community.lls...l=+cml +testing

[tiffany38]

Thanks! I know she did the PCR but I can't see the results. Looking forward to asking lot's of questions Thursday...

[Trey]

A PCR can confirm the CML diagnosis but a proper diagnosis would have a BMB done as well.  For your early stage the risks of not having a BMB are small, but as I mentioned, a BMB is standard protocol for diagnosing CML.  Here are some questions I would ask the Onc at your next visit:

 

1) What does the PCR report show?  Was it a numerical (quantitative) PCR?  If so, what was the PCR percentage?  Is the percentage in International Standard format?

2) Why was a BMB not done since it is standard protocol for diagnosing CML according to NCCN Guidelines for CML*?  Now that the PCR confirms CML, shouldn't a BMB also be done since it shows things no other test can show?

3) What is the Stage of my CML (assume Chronic Phase)?

4) Do I have any high risk factors?  How do you know if a BMB was not done?

5) What drug will I start on and why was it selected? (Probably Gleevec, Tasigna, or Sprycel)

 

*NCCN: National Comprehensive Cancer Netwrok

http://www.nccn.org/...ancers.aspx#cml

[tiffany38]

I'm really struggling today and could use support. I can't imagine how I will deal with potential side effects of medicine as today I am so exhausted after just taking my kiddo shopping. My muscles hurt and i feel so weak. I also threw up my whole lunch. I feel bad complaining and wonder how will I ever handle the tki keep my job and care for my kids...

[tiffany38]

Sorry for the vent

[gerry]

Don't apologise.  If you read some of the other threads you'll see we've all had down times.

 

You won't really know how you'll be affected by the TKIs until you start them. Plus you might actually feel better once the CML is under control. 

I continued to work while on Gleevec and even had my first over seas holiday about 4 months after diagnosis.

[Trey]

These initial issues are usually at their worst approximately weeks 2 - 8, then things will usually start getting better.  It will not always be the way it is now.

[Billie Murawski]

Tiffany,

  Hang in there kiddo we'll get you through this, probably your nerves are doing a real number on you right now. A lot of people on this board go on a tki and have no side effects or mild side effects that go away in a couple weeks we are all different.Just remember that your body adjusts to the meds. You are probably feeling worse right now than you will once you start on your med and understand more about cml. All this waiting is the worse part.

Vent all you want we all do, and we all know how you feel because we have all been there. And remember not everything is cml related.

You'll have ups and downs emotionally for a while but you will adjust. Sometimes we have off days where we are so tired or just don't feel good we all have them anyway without cml but what will really piss you off is when you have an off day and everyone says to you "but you look so well" don't expect a lot of sympathy because you will always look fine. CML will not kill you my doc said it would be something else or old age etc. you'll suffer through peri-menopause, menopause, hormone imbalances just like everyone else and you might need mild hormones or something you're getting close to that age so keep your pcp updated. They took my hormones away from me years ago and I want them back!!!!! I had other problems though.   take care  Billie

[Bmorris]

Tiffany38,
Welcome! I sit here reading all your posts and I have to smile. NOT because any of this is funny, but because I was posting all the same concerns three months ago. I was scared to death, didn't know what to expect and was afraid to get off the couch.
I started on Tasigna and had to change to Sprycel. Some people do fine on Tasigna, but my liver didn't like it. I'm actually doing great on Sprycel! I'm doing everything I did before. The only side affect I have is hot flashes.
So, try not to worry too much and stay on here with us. I love these people, they have and will continue to support me.

Barb

[tiffany38]

Thanks everyone!pretty rough day at work today. My mind is racing and I'm so exhausted I just can't wait to get treatment and start feeling better!

[Antilogical]

Hey, tiffany!  What do you do when you're not stressed out?  Do you have hobbies?

[tiffany38]

Not really my kids and work pretty much consume me. I journal, cook, and have a lot of friends but for some çrazy reason they are all really quiet since i found out like they don't know what to say to me. I have only known a few days so honestly my head is still spinning plus i don't feel well .

[gerry]

Once you know what is happening in regard to meds and such you can have open chats with them. Understanding a TKI is going to be the hardest thing for them to get as most people associate cancer with chemo and losing your hair.

[Antilogical]

Not crazy.  They're probably trying to be considerate because they know you're not feeling well.  When you start behaving like YOU again, they'll come around. 

 

So Journal.  Cook.  Yell at your kids.  Whatever you feel like doing.  Yeah - you will....

[Billie Murawski]

Trust me Tiffany,

  They'll get over it! Once our family and friends see how we respond to treatment there are a lot of us who could use a bit more compassion fatigue seems to be the biggest problem and that's where we could use some extra help but you're young so that probably won't be a big problem with you just listen to your body and if it needs rest lie down. I bet with your busy life style you are always coming and going if thats the case you'll have to learn how to say no!                Billie

[Gail's]

Tiffany, I sure feel for you. Barely out of the initial stages myself. It's better now than at first. It just takes time. I'm like a home improvement show, I want the old kitchen torn out and rebuilt in 30 minutes just like on the show! I want to feel good right now! Keep venting here and read and learn from the great amount of experience here. Take care.

[Bmorris]

Hey, haven't been on here for awhile.
Just wanted to tell everyone that I have been on Sprycel for about 5 months. I was just told that I am in major molecular response. No bad side effects, just some hot flashes. Doing pretty darn good right now.

[rnowinski]

Hey, haven't been on here for awhile.
Just wanted to tell everyone that I have been on Sprycel for about 5 months. I was just told that I am in major molecular response. No bad side effects, just some hot flashes. Doing pretty darn good right now.

Congrats!!!! By reading your previous posts, it sounds like you went through quite a bit. I am so glad to hear that you are doing so well now! It gives me hope..... I am also on Sprycel (about 5  months).. I am having trouble with my dosage. The muscles in my left leg are really being affected. Sometimes I can hardly walk. I am hoping this passes soon because I really miss working out at the gym!  

[chriskuo]

Are you taking a statin?  Some statins can interact with Sprycel and cause leg pain.