Hi everyone, my name is Shirley-Ann and I've just been diagnosed with cml. The hematologist started me on Allopurinol 300mg at night then imatinib 400mg in morning after food.
After taking imatinib I feel quite nauseous so I go back to sleep after taking it and awake feeling better not perfect but tolerable a few hours later how ever was told if I had a temp of 36.5 or above to call the nurse specialist. This last week I have had bad headaches, fluctuations in temp from normal to 38.7, loss of appetite, now rash across my chest, aching limbs and extreme fatigue.
When I phoned so call special nurse she was not in and another nurse from oncology phoned me back, she said I wasn't having "chemo"so not to worry to much.
I have only had one blood test one week after starting treatment and have not been sent any further blood test appointments, my next hematologist appointment is not till the end of month.
I thought from what I've been reading I should be monitored better than this what are your thoughts please?
I'm from Dorset in England anyone ou
t there in my next of the woods?
You are here
Newly diagnosed
It really depends on your condition at diagnosis.
When diagnosed I was borderline accelerated-phase and I had myelofibrosis. I was anemic and with an enlarged spleen .
Sprycel had a huge impact on my blood counts, and risks for infections were high.
For these reasons I was monitored twice a week. With the improvement of my conditions the appointments spread out, and now I am tested every 1 or two months, with the usual PCR every 3 months.
You are taking a normal dose of Imatinib, which is far less impactful than sprycel on your neutrophiles, so maybe frequent testing is not required.
Speaking in more general terms, the schedule does seem a but too spread out to me, especially since you're just beginning treatment.
But again, it depends on you blood counts and general condition.
The best thing you can do is talk to your hematologist / oncologist and ask for clarification.
Davide
Hi thanks for your post Shirley sorry to hear that you have had to join us, cml is generally very treatable now, but a lot to get your head round. Allopurinol is quite normal to reduce a high white blood count short term, not effect on your CML but good for the reduction as mentioned which will help thinning of your blood. 400mg Imatinib again is normal and the standard dose.
Many take there Imatinib after their evening meal, I do, as this is usually your biggest meal of the day, where as breakfast for many will be a smaller meal, perhaps a change will help, a lot ? The aching limbs, and fatigue can be a side effect for many. Many do find as their body adjusts to the drug ide effects diminish, hope yours do.
Chemo, that’s an interesting one, yes really it is of a type, many call them targeted therapy, which it is, but still cytotoxic. Most will have blood texts in the first few weeks more often than you mention to ensure blood are returning to normal, eg white count and other aspects. Have you had a bone marrow sample taken, not all do now, but most still will. Perhaps speaking to the nurse again may be a good idea to raise your thought, and comments, otherwise if you are not happy as time progresses you do have the option to transfer care to another hospital. All the best Nigel
Thanks for replying Nigel
Yes I have had a bone morrow biopsy, before I was put on any treatment. I will have another chat with the specialist nurse, and see if I will be allowed to change the time I take my tablet to see if this helps with the nausea. I also have fibromyalgia so the aches and pains and fatigue are really nothing new although are worse. Popped in to see gp today who's put me on a low does antidepressant, as mentally finding it hard to cope and trying to look after my aging father who has Altzhimers. Been told I need to look after no 1 and to put my father into care until I am able to get a grip on this disease. Not an easy decision for me to make, so we shall see hopefully treatment will start to work quickly,and it won't come to my having to make that decision.
Again thank you for replying
Regards Shirley-Ann