Chronic Myelogenous Leukemia (CML) Support Group
Chronic myelogenous leukemia affecst the balance of blood cells in the body, disrupting the normal balance. The cancer cells eventually begin to outnumber and push out the good cells, and could lead to anemia and easier bleeding/bruising. If you or a loved one is diagnosed with CML, this is the community to discuss your experience.
Hi my name is peter and I was recently given the news about CML.
I had no symptoms and only found out after I went in for a routine blood test for cholesterol and PSA score.
My white blood count went from 7 to 141 over a period of 18 months.
had the BMB with a General Anesthetic cause I refused to have it any other way!
I elected to go on a trial of Nilotonib which is aimed at refining the dosage of the drug after being initially stared on Hydroxyurea. It all went fine with few side effects for the firs 5 days then it was like it really kicked in as on day 5 as i had a big dose of the "CBF" can't be fagged and all my calf and thigh muscles were really sore.
Went for the blood test the next day which was supposed to be a before taking meds and then after but someone forgot to tell me so I took the morning dose and went to the Hospital.
Got yelled at because I had mucked things up!!!!
It was decided to go ahead and do a blood test any way that was at 1030.
Test results came back and I was ordered to stop taking tablets at 4.00 pm .
One of the tests showed that an enzyme in my pancreas had gone up which is why I had a pain in my LHS. The best news was that my white blood cell count was going the right way had dropped from 141 to 107 to 68 to 37.
So I go back to the hospital next thursday and see what happens from there.
cheers
peter
I had no symptoms and only found out after I went in for a routine blood test for cholesterol and PSA score.
My white blood count went from 7 to 141 over a period of 18 months.
had the BMB with a General Anesthetic cause I refused to have it any other way!
I elected to go on a trial of Nilotonib which is aimed at refining the dosage of the drug after being initially stared on Hydroxyurea. It all went fine with few side effects for the firs 5 days then it was like it really kicked in as on day 5 as i had a big dose of the "CBF" can't be fagged and all my calf and thigh muscles were really sore.
Went for the blood test the next day which was supposed to be a before taking meds and then after but someone forgot to tell me so I took the morning dose and went to the Hospital.
Got yelled at because I had mucked things up!!!!
It was decided to go ahead and do a blood test any way that was at 1030.
Test results came back and I was ordered to stop taking tablets at 4.00 pm .
One of the tests showed that an enzyme in my pancreas had gone up which is why I had a pain in my LHS. The best news was that my white blood cell count was going the right way had dropped from 141 to 107 to 68 to 37.
So I go back to the hospital next thursday and see what happens from there.
cheers
peter
Those results came back today and are back to normal so back on the merry go round.
Has any one else ad those side effects?
Peter
Cheers
Peter
Jennifer
I don't get on this site all that often but pancretitis can be a side effect of Tasigna. I'm on Gleevec so was letting the Tasigna users reply to you.
If you'd like to chat with some other people who have been on the CML merry go round a lot longer than me, then come visit http://community.lls.org/community/bloodcancer/livingwith/cml/content?filterID=content~objecttype~objecttype[thread]
Not sure if you've tried Gleevec, but there is also Sprycle available and a couple of other in trial.
Please don't give up.
Thank you for your messages of support sorry to get the grumps.
for those wondering where I'm located. I am in Melbourne, Australia
Cheers
Peter
I'm from Brisbane -
Great that you side effects have eased. I was diagnosed end of June 2010 and started 400mg Glivec, showed PCRU last blood test and am hoping to show the same next month.
There are a couple of us Aussie girls on the LLS discussion board, but we are all on Glivec.
The diagnosis hits pretty hard, I know my head spun at the thought of it for at least six months.
The blood test results came back fine but the blood tests themselves are the hard part.
I hate needles and they had to stab me six times all over the place to get the blood they needed. If I ever drop out of the program it will be because I can't handle the needles
Not matter how hard I try to relax and stay calm I get real anxious cant help it. Can't even look at a needle and had to have a full GA to have the bone marrow biopsy.
Peter
The good news is as you progress through the stages of Response you need to have less blood tests. I only have to have blood tests twice a year now and when I reached MMR I no longer had to have a BMB, so only had two of those.
You do get used to having blood tests, but I still don't watch it being taken. You can also ask to lie down when they are doing it. When I had the initial PCR test they took 8 phials of blood, I lay down for that one - more from the shock of her saying how much they had to take :-)
Start asking for copies of your results from your doc, it helps if you want to ask questions - Trey on the on the board is particularly helpful with this.
Your appointments with the specialist will drift out to six months as you get a deeper response to the TKI. I get my blood test done a couple of weeks before I need to see the Hematologist. I see my GP (who has been sent a copy) before hand and we go through it together. It has been a learning experience for her as well. It helps me when I see my specialist as I know what the results are and we can talk about other issues such as side effects and a possible dosage reduction.
Make sure you drink a couple of glasses of water before you go for your blood test, it will make your veins a bit plumper which might help.
White blood cell count is now down to 11.2
Red cell count is up so that is probably the reason that I'm feeling like I was never sick
By the sounds of it I am getting a good response to the nilotonib (Tasinga) so that is a real positive.
The amazing hing is that I now have no side effects from either h treatment or the drug.
That is good news - first milestone to achieve is CHR - Complete Hematological Response (blood work is back to normal).
Great that your side effects have disappeared. My doc really likes Tasigna (in regard to less side effects than Glivec) and mentioned to me about switching to it, but I'm going to stick with Glivec and see if I can get a dosage reduction next month instead. Tasigna is similar to Glivec but is stronger, so you should get a quicker response to it.
All is going well. Am learning to cope with the needles. I still don't like them but have resigned myself to them.
My white blood cell count has gone down again. April 24 saw it at 11.2 last Monday week 28 May it was down to 5.6. So I'm really happy with that.
Then last week another minor set back. The brc-abl suddenly went back up again. No real reason. @ diagnosis bone marrow biopsy it was 96% it all seemed to be going ok as it had dropped to 11% and all of a sudden it has spiked to 25%.
So I had a "warranty recall" meaning another blood test out of the routine planned ones. I was quizzed as to if any other medications had changed, was I taking any supplements or cortisone tablets/ creams for a rash.
The answer was no to everything so another physical exam of the lymph nodes etc. all was OK so take blood sample. That was last Friday. Monday was a public holiday here in Australia si I should get the results either tomorrow or Friday at latest
Apart from that I'm feeling really well and am getting on with life, trying to enjoy everything rather than the angrys that I have had
Cheers
Peter
You may have had a virus at the time you had your blood test. They'll be looking for a trend to be occurring rather than a one off. If you do lose your response to Glivec there is Tasigna and Sprycel available. My doctor is very keen on Tasigna and suggested I swap if I didn't like Glivec's side effects. I decided I didn't need or want to at this time as Glivec has gotten me to PCRU. I'm about to start 300mg as a maintenance dose.
Glad things are getting better for you. Hopefully your WBC counts settle down either with Gliver or Tasign and you get to a point where you only need a blood test every six months.
I'm on a drug trial taking Tasinga/Nilotonib, the dose is 400mg twice a day. I haven't been notified of the results of the latest test but assume that if it wasn't right I would have been told by now.
Next blood test is end of June, which is the 3 month timing
Cheers
Peter
White cell count down to 4.9, plant letters stable and everything else is in the normal range.
So it would seem that we are heading towards CHR, we having a god response but not there yet. Still it has been less than three months since the biopsy confirmed the first blood test and Rome wasn't built in a day.
Cheers and hugs to all CML recipients
Peter
Not sure if you've read the NCCN Guidlines - it outlines when you should be achieving milestones. Remember to count from when you started Tasigna and not from the BMB (as memorable as it was).
http://www.nccn.com/files/cancer-guidelines/cml/index.html#/40/