Hi guys, I'm looking for some advice and experiences to help me make a decision
I've just seen one of the top specialists in Australia to discuss what I should do next with my treatment - I was hoping to reduce my dose to cope with side effects, but was influenced by the doctor's opinion that cessation is a potentially close goal for me, and if I reduce, I may lengthen the time it will take to get to a point where I can try, or the point where it is most likely to be successful.
Given my local testing equipment only measures accurately to MR4.0, there is no data on how low I actually am - I had a test done in Adelaide, which showed I was 0.002 - so I am currently between MR4.5 and MR 5.0. Close, but he seems to think a better option is to switch medications, see if it helps with side effects, and beat the CML down even further with the goal of increasing my chances at cessation in a year (max two). Of course, I can stay on Glivec if I want, but it may take longer.
So, I guess if I try a different medication, I'd be hoping to reduce some of my worst side effects (fun list below!) - has anyone switched from (full dose) Glivec to (full dose) Tasigna or Sprycel, and had a good experience?
If I have to switch, I'd hope that some of these side effects would improve...
- Brain fog, concentration/memory problems
- Muscle cramping and fatigue
- Fluid retention, facial swelling
- Phosphate, iron depletion
- Gastrointestinal problems (bloating, gas, diarrhoea, nausea, severe pain)
- Feeling cold, increased vellous hair ?thyroid
- Sweating and heat sensitivity (heat rashes)
- Severe dry eye (I've had punctual plugs)
- Healing issues (tendons), increased swelling and bursitis
- ?Susceptibility to neck nerve swelling (thoracic outlet syndrome)
- Thin skin, skin tearing, bruising, blood blisters, dry skin, sensitive skin
Pale skin, sun sensitivity, burning, Nail ridges and brittleness, Changes in hair texture and colour, Dizziness and visual disturbances, Occasional reflux, Occasional eye bleeds