112 replies to this topic

[Trey]

DD,

Since every one of us with CML either is or was Philadelphia Chromosome positive, I am not sure what BM meant.  But in the broader sense, no one knows what the future of cessation will be.  That is why there are trials.  The issue may either be simpler or more complex than it appears to us now.

[DebDoodah22]

Thanks Trey.
That's how I thought it was, I thought it was all CML but my understand is limited to what I read here and in the few Journals I can access. Sorry, that was a small panic.
The trials give me hope that we can know a cure. Or at least, I am hopeful that research will find a way to preserve or extend life without too many detrimental side effects or at least reduce the side effects some.....but then I guess thats what we all hope/want?
Indeed the answer is always more simple or complex than it appears...thank you.

[tiffany38]

I'm m new and newly diagnosed. I see my Oncologist Thursday to discuss treatment I'm just here for support. Wondering what to expect...

[gerry]

Hi Tiffany,

Welcome to the board. 

It is a pretty scary time for you at the moment and we've all been there.

Do you know what stage you've been diagnosed in. Most of us are diagnosed in the Chronic phase which is easier to manage.

[gerry]

Hi Tiffany,

 

Something for you to read as well http://treyscml.blogspot.com.au/ 

[tiffany38]

I really don't know yet.  My labs came back while my oncologist was on vacation which we knew was going to happen. So she emailed her finding to the nurse which was told to me as" your results are consistent with CML as we suspected and we will discuss treatment at your appointment next week" I do know I feel pretty crummy (weak, fatigue, short of breath, joint pain) and I have so much anxiety and am not sleeping well which doesn't help...

[tiffany38]

Hi Tiffany,

 

Something for you to read as well http://treyscml.blogspot.com.au/ 

The link is broken

[tiffany38]

Can you tell me what I might expect at the next appointment. She said labs were conclusive and no bone marrow was needed. Will there be chemo? Are the TKI drugs chemo? Its all so confusing....

[Trey]

Tiffany,

Welcome.  We are here for you.  Here is info for newly diagnosed patients:

 

http://treyscml.blogspot.com/

 

 

 

(Gerry tried to make me an Aussie by putting .au on the end of the link above.)

[gerry]

Tiffany,

Welcome.  We are here for you.  Here is info for newly diagnosed patients:

 

http://treyscml.blogspot.com/

 

 

 

(Gerry tried to make me an Aussie by putting .au on the end of the link above.)

Texan / Aussie we're almost the same. lol

[gerry]

Some docs aren't doing BMBs these days.

 

I'll leave you to read Trey's Blog - he's our go to guy and can put you straight on any issues. 

 

TKIs are a tablet you take - I was on Gleevec, which was the original drug. They are targeted to the CML, so don't wipe everything else out as well like chemo. Side effects from the TKIs vary from person to person, some get somethings, some don't get any and others need to switch their TKI on occasion. 

 

When I took my first Gleevec tablet, I lay down (which you're not supposed to do anyway) and waited for the side effects to hit. Nothing happened and I got up and went back to doing what I was doing.

 

Fatigue is the most common side effect from all TKIs. 

 

We've got people on the forum who have been on Gleevec from when it first became available around 2001, the other drugs are newer and more treatments are in the pipeline. I won't say this is an easy journey, but it is one you'll be on for a very long time, or at least until they come up with a cure. 

 

Ask plenty of questions, watch what you look at on the internet, only view current items. There is a lot of outdated stuff on there. 

[tiffany38]

Thank you all so much I'm glad I found this page. The anxiety is killer right now and having someone to talk to helps. I am 37 and never in a million years expected to get this diagnosis i just thought I was maybe anemic or something. I mean I knew something wasn't right but I got blindsided with this. It is helpful to find people in the same situation to lean on for support. Thanks again!

[gerry]

I was diagnosed at 46, only thing I had going on was elevated basophils on cholesterol reports. I actually chased my GPs up about it as I felt it wasn't right and it was ongoing. One GP eventually listened to me and sent me off to the Hematologist. I had already googled what elevated basophils were, but was still shocked at the diagnosis. Took me about three months to come to terms with it, lots of crying in the shower etc.

 

We are all here to give you a hand where we can. 

 

A tip for you is to find a doc you like, you're going to be with them for a long time, so you need one that listens to you. Ask for a copy of your results and then you can post some of it on here for Trey or one of the others to look at and they can give you some feedback. 

[tiffany38]

One of the things that was noted on my labs was partial cd56 on myeloid cells. Anyone have any clue what that refers to?

[gerry]

From what I can tell cd56 are good - natural killer cells, they decrease as CML increases. 

 

Trey might comment as well, particularly if I'm incorrect. 

[tiffany38]

That makes sense. How do i post a picture of the lab results I have

[tiffany38]

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

[Billie Murawski]

Hi Tiffany,

   I'm so sorry you have to deal with this cml but I'm glad you found this discussion board. Welcome I don't understand all the info you are about to receive but there are so many people on this board that are very knowledgeable and will calm many of your fears. On August 7th it will be 8 years since my dx (diagnosis) I was on a tki called Gleevac (G) for 3 years and I now take Sprycel (S) for the past 5 years my cancer cells have been undetectable for the past 5 years. A tki is a med we take that kills the cancer cells it isn't chemo but it's easier to explain for me. You will be fine, what you are going through right now is the hardest part just stay with us and all your questions will be answered the waiting is terrible. My advice to you is find a nice wine that you like and drink it in moderation of course it will help calm you down and you'll sleep better .  Sincerely Billie

[jboswor1]

My first post, let me introduce myself. I am 41 and was diagnosed on my wife's birthday at the end of May'15. What a way to spend her birthday at the hospital. My WBC was 432k and my spleen was huge. Last year, I had a lot of severe muscle cramping issues in my lower legs, usually at night. Not sure if that's related or not, but it has gone away since being on treatment. At the beginning of this year, I started having night sweats, losing weight, tired, etc. When I felt the firmness in my abdomen and had feelings of fullness, I finally went into the doctor. Went pretty fast from there, CBC, CT scan and within 24 hours I was at the hematologist/oncologist getting the diagnosis followed by a bone marrow biopsy. Bone marrow was completely dry, I think he said 100% cellularity, something like that. Then there was the concern about telling my 4 children (16, 15, 13 and 10 yrs old). Long story short, it was fine and they are fine given the very positive outlook I could give them. I was on hydroxyurea for a few days and then onto Sprycel. Within a few weeks, my WBC was down to ~3k, but my platelets also dropped below 50k and went as low as 32k. So, I had to go off treatment for 3 weeks, when my platelets finally jumped to 108k. Interestingly, my WBC stayed low the first two weeks off treatment and only started coming up again in the 3rd week (~29k). After 1 week back on meds platelets jumped to 175k, but WBC also jumped to 88k. After 2nd week back on, WBC is back down to 10k, but platelets took a hit again at 98k. So, I'm worried about 100 mg dosage and being able to stay on meds. Going off and on is no fun, second time going on was tougher than first time. Headaches for a week. I live in the Portland, OR area so I am going to see Dr Druker at OHSU on Thursday. Really excited. I was supposed to see him a month ago, but on the day of my appointment, he had to appear on Good Morning America with Phil Knight to announce that OHSU had reached the goal of raising $500M and it would be matched by $500M from Phil Knight. So, my appointment had to be rescheduled, LOL. What an awesome accomplishment that should make a huge difference for cancer research. Exciting times. Thanks to everyone who posts here. I have been watching from the shadows and it has been really helpful as I learn about my new normal and what to expect.

[Gail's]

Welcome,jboswor. Sorry you're on the cml path but we are too. Very supportive group here. I am also in the Portland area. I think you're lucky to go to Druker. I wanted to but would have to pay out of pocket so I'm staying with my HMO oncologist. I'm interested to hear how it goes for you.