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
I spoke to the co ordinator today and the last "product recall" was for the jump in the BCR-ABL. They have tested it for any mutations in the previous tests which showed no mutations. The latest test results should be here later this week.
My three month follow up tests are on 26 June. So fingers crossed we will continue the results we have achieved to date
I had a strange thing happen in that at diagnosis my Brc-abl count was 96% . That dropped significantly to 11% and then for some unknown reason it spiked back to 25%. This was outside the error factor so I had to go back for another round of blood tests.
Still waiting for that test result to come back but the staff at the Austin are confident that it was a one off and that all is OK.
The new Olivia Newton-John Wellness Centre has officially been opened. The day oncology moves over from the old rooms to the new centre earlynext week and I think that the first outpatients are to be treated from 2nd week of July. The reports are that it is a wonderful building with great less clinical looking and feeling treatment areas.
White blood cell count now down to 4.9. So we are the lower end f the normal range which is 4-11.
All seems to be going the right way
Peter
Remember it is the trend that counts. Hiccups can happen with the blood test. I have never had a correct PCR test from my two BMBs, so was in the dark a bit at the beginning.
I saw the Olivia Newton John Cancer Centre on the news a month or so ago - they've done a great job in getting built.
Let us know your test results when you get them.
Gerry
The brc-abl gene is down to 1.5% and that my white blood cell count is still at 4.9. So we are heading rapidly to CHR.
All I can say that to go from where I was with brc-abl at 96% and WBC count at 141 in March to brc-abl to 1.5% and WBC to 4.9 in 4 months is nothing short of amazing. The medication that I am taking is Nilotonib.
I am on a drug trial to test the efficacy of Nilotonib at 400mg twice a day. I have had virtually no side effects from the drug. One dose of Pancreatitis in the first week. I stopped the tablets for a week then restarted and have had nothing since.
I have had a look at some of my earlier posts and am shocked at my pessimism and negativity with what was happening.
I can now see a new horizon and it looks bright and blue. Next is the car racing medical and then back to the hobbies with renewed enthusiasm.
God bless the CML researchers.
Peter Sneddon
There may still be times when you feel a bit down about your diagnosis, but that can be expected. Also CML seems to like stress and I've seen a couple of people on other forums whose PCR figures bounce around a bit because of the stress, so try to stay positive for the most part. Have fun with your hobbies.
Take Care
Gerry
Everyone is pleased with my progress and the blood tests agree with them. I am experiencing no symptoms of CML and have no side effects. Which is truly amazing considering what the situations could be wit side effects. The only thing that has happened out of the ordinary is that I have gaine 3kg in weight eating and drinking no more than before and all of a sudden too.
I saw the Onc about a month ago he was pleased and stated that they like to have the brc-abl % below 10% after the first 3 months of treatment. Mine was at 1.5% so I was really surprised and pleased.
3 weeks ago I had another blood test, that was the 6 month stage after diagnosis. I received the results an am absolutely amazed. The brc-abl stands at 0.036%.
So where that stands with the CHR or the C Cytogenic R (CCR) or C Molecular R (CMR) I am not sure but it sure sounds good
So a big WAHOO from me for the staff at the Austin Hospital and the "mad" scientists that made this treatment discovery..
Cheers
Peter
According to the info I have on the International Scale, you are at MMR (Major Molecular Response).
So Angel was right with her observation, Thankyou.
The Proff congratulated me. My reply it was him and the mad scientists that have given me a chance to go and live life to its fullest again.
So the story goes that within 6 months of being told that I have a bloood cancer I can report that it's almost under complete control.
If you read all my posts it will be seen that at the start I was in all sorts of trouble mainly coping with what I was being told and my reactions to the story.
The other piece of news is there are trials being undertaken with fellow " leukemiaites" that have been in CMR, complete molecular response, for 2 years may be considered for coming of their medications to see if the can maintain their CMR status and for how long.
I'm feeling really excited about he future now, so much more than the gloom and doom that I was giving off just on 6 months ago.
So here is a big hug to all the fellow travellers of the course that we are on in this forum. HUG HUG HUG
Cheers
Peter
Life is back to normal well almost. But it is past the dark days
So for all the early newly diagnosed. Hang in there cause the drugs work
Cheers
Peter
For myself, I am going to have a go at coming off Gleevec in October, I will have reached two years of PCRU by then. Hopefully I will continue to keep my PCRU.
Happy New Year for 2014.
I'm sorry that I haven't been here for such a long time. All continues to go well have had 3 consecutitive blood tests where the Brc-abl "score" of 0.025% or there abouts.
So everyone seems happy with my progress. Very few if any side effects. Lost hair from my legs and under armpits. So I don't gave to shave the legs to be a bike racer!!!.
I hope that all is well with the others here afflicted with CML
Chat soon
Cheers
Peter Sneddon
Good to hear from you. Glad you're doing well.
I've stopped taking my Glivec, with doctor's okay. Just waiting on test results to see if I am still maintaing my negative (PCRU). It's funny, even though you think you're travelling pretty well with side effects from the TKI, you do notice the difference when you stop taking it. It has been over a month and a half now since I stopped and I almost feel like my old self.
Wishing you all the best for 2014