Hi All, I have previously posted about this subject before but I have been back to clinic today. Thanks Sandy for your reply to my last mail & I took your comments on board.
I have been on a reduced dose now for 8 weeks & my levels are fine. I was on 400mg & am now on 200. My white count is 10 & has stayed at this level for the last 6 months. Its been a year to day that I was dx.It appears that by reducing the dose has not made an increase in my white count. The only differenc is that my heamoglobin count has increased to 14.5, which is good and there has been a slight rise in the platelets. My consultant is happy for me to stay on this dose for another month, when I go back to clinic. He has done a BCR ABL test again today. Then I will have another bone marrow biopsy, probably in October. The consultant has a few other patients with CML on this dosage with no increase. The terrible side effects have improved by about 60% and I have had to take less medication to counteract them. My last biopsy 6 months ago gave me a log reduction of 2.5, 6 month after I was first dx.
I was wondering if anyone else has had a reduction in the dose ie from 400 to 200mg? As I am so new to this I am not experienced enogh to know if this ok. I do trust my consultant but they arent God! I did ask about the clinical trial in Liverpool but the consultant said the PCT wont fund it! Many thanks for your time in reading this.
Ali.
You are here
200mg Glivec
Hi Ali,
whilst I am glad that you are not suffering such bad side effects on the reduced dose, I must say that I find your consultant is rather unusual amongst specialist CML clinician in that he has other patients on such a low dose. The internationally agreed guidline for chronic stage CML is 400mg as the most effective dose.
200mg is not considered a safe dose to keep CML patients on as too low a dose may lead to resistance.
Your white cell is on the higher end of normal and it is my understanding that most CML experts prefer white counts to be around 2-4.
If you are intolerant or resistant to Glivec then you can try dasatinib (Sprycel) or nilotinib (Tasigna).
Both drugs should be funded by your PCT if your doctor considers you would benefit clinically.
PCT's are not qualified to make clinical judgments. Neither drug is any more expensive than Glivec.
If your local PCT will not fund either of these drugs then your consultant can (and should) appeal. There is a booklet written by a barrister expressly to help clinicians appeal through the 'exceptional treatment panel' process, and is available for you to download (or you can send for a hard copy) for free from the rarer tumours forum...
see the link to their website under Newswire post dated August 1st.
I strongly advise you to get second opinion from an expert clinician.
If you are in the north then there are CML specialist centres at Liverpool/Leeds/Newcastle and Manchester
I do hope you can sort things out.... please consider registering for the CML patients UK seminar in London on Saturday 15th November. You will learn a lot about CML and the treatment options, and also meet other patients.
Your can register by clicking on the box under the left hand menu.
please email me privately if you feel you need to... sandr1ne@aol.com
best wishes,
Sandy
Hello Ali
Just saying congratulations on your first CML Anniversary! By coincidence, 4th September is also the date that I was diagnosed in 2006. All the best for many more anniversaries to come.
Best wishes, Janet