Hi,
I have just started Glivac on 400mg and have to say that until today no real side effects after about 7 days of taking this.
But today, I seem to have horrible pain in my jaw and my right bicep has started hurting all of the sudden. Did any of you experience this while getting used to the drug? Does it go away?
Kind Regards
Bill
Hi Joseph, thanks for the link! Very useful and thanks for the funny story about this.
I have found also my arms cramp quite bad when I use the computer so I will put some of the advice to good use.
Have you achieved good PCR response to the Glivec?
Are there many people in Sweden with CML? I have been to Finland and Norway and Denmark but not yet to Sweden, am I missing the best of the Scandanavian countries?
Kind Regards
Bill in the UK
Hi Bill
I think cramps are an occupational hazard with CML! Like Joseph, I was diagnosed last Autumn. I am lucky enough to have no major side effects from glivec but do sometimes feel sick, and I also sometimes get cramp in the toes and in my insteps. Again at the wierdest moments and usually the most inappropriate - I'm a teacher and have been hopping around the classroom before now with the children looking on very puzzled!
Regards, Janet
Diana G
I'm another autumn '06 'diagnosee'. On two occasions recently I've been lounging around on the sofa watching telly, only to feel that old familiar Glivec cramp in my right hand, and to watch in amazement as it involuntarily contorted and remained thus deformed for about 30 seconds before relaxing into normality! Very dramatic! Remember how Dr. Jekyll turns into Mr Hyde in the old horror film?? Glad I was on my own at the time! Not a pretty sight!
Hi, Janet - hope you're doing OK. Sounds as though you are, as you have the energy to hop around the classroom!
Regards,
Diana
Hi Diana
Yes I'm doing fine thank you. Had a visit to the hospital last week when the consultant did another bone marrow, so I have been hopping a little less athletically when the cramp strikes since then!!! :-)) How about you?
Regards, Janet
Diana G
Sorry it's taken me so long to reply - only just found your message of May 8!!
Glad to hear you're doing well. I'm OK, thanks. The doc says the blood is clear, I had a bit of bone marrow taken from my chest the other day (that hurt!) and am waiting for the results which could take between 2 and 5 weeks. Is this called a PCR test? I only get seen by my doc every 3 months - is it the same for you? I sometimes get a bit edgy towards the middle of the third month, wondering what's going on inside...but I don't ask him about the technical stuff and he is never forthcoming with any detailed info, so I just plug on with the old 400mg of Glivec.
My energy levels don't seem to have diminished at all: I shifted a tonne of gravel in bucket loads last week (a bit of garden diy) and had to take a pick axe to some concrete to plant a tree. Funny,I still get all the crummy jobs in the garden, despite occasionally resorting to playing the 'leukaemia' card...!
Keep in touch,
All the best,
Diana
Hi Diana
Bone marrow taken from your chest?? YOuch - that sounds like it was painful. My consultant goes digging about in the back of my hip when he does mine and manages not to hurt at all, which suits me fine, being a wuss about pain!!! :-) It sounds wierd, but the further away any medical intervention is from my eyes, the better I am pleased. I can take a casual interest when the needle goes into my back, for me it's a bit too clear when the needle goes into your chest straight in front of you!
Hope you get your results back quickly, mine are due a week on Tuesday - 6 weeks after the test was done. Seems an awful long time to me but I'm told that is the usual time to wait.
I know that I am having both a FISH test and a PCR test done from the sample of bone marrow, but they are not the same thing and are dealt with in the lab in different ways. The FISH test looks at anything up to 500 cells, but the PCR test looks at up to 1 million depending on the lab. so the PCR is a much finer test. The exact chemistry/genetics/biochemistry or whatever it is, is way beyond me....
At the moment, I am seen every 6 weeks at the hospital but my consultant was muttering about putting it up to every 2 months last time I was there. Like you I'm fine for most of the time but by the time my appointment comes round I know I need to go again to get reassurance [hopefully!!] that things are still bumbling along OK. I do have a number I can ring if I am worried that gets straight through to the clinic and I have rung that a couple of times when I have been concerned - normally in school when I have got panicked about infection, chicken pox etc.
My energy levels are good as well. In fact, in retrospect I feel much, much better than I did this time last year. I was really tired then, completely worn out, and stressed - little did I realise the cause...
Take care and I'll post again with the results when I get them - you remember to do the same!
Janet
I am overwhelmed with the changes to my body since starting tasigna! My numbers are great, dr couldn't be happier...... me however just want to crawl in a hole and die. Lost most of my hair in the front (female) so I had to buy wigs, my fingers cramp all the time. I'm a candlemaker, not good when playing with hot wax. Sense of smell is all jacked up. Bought a bottle of new candle oil called Blue Hawaiian... supposed to smell like pineapple, mango and suntan lotion, I smell butterscotch. Even had them send me a 2nd bottle thinking maybe it was mislabeled. Nope still smelled butterscotch. Not much nausea thank god, but spleen was so enlarged I couldn't eat, and my stomach shrunk so I still cant eat much or I will lose it. I can count on a headache with in 90 min of taking meds so I take Excedrin before I take my meds. Jaw pain started a few days ago, and the icing on the cake is I had to go back to see my dermatologist from when I was 16!!!! Skin issues at 55! So I wear fake hair and have acne....what a joke. My family tries to be supportive but they really don't have a clue. I really wish I had never gone to the dr complaining about being tired and couldn't take a deep breath(I don't smoke). If I hadn't gone I'd be gone by now. I know I sound like poor pitiful me, and it's probably fairly accurate,but it's how I feel. I don't know where to turn, I see a shrink, due to chronic depression... I lost my 17 yr old daughter when an 18 wheeler turned in front of her, she bled out in her car. Lost my Mom a little over 2 yrs ago to complications of dementia. Dad's been gone 34 yrs, fatal heart attack. So I have a wonderful husband, 1 daughter who has a very high pressure job, a son in law on disability because he wont get his knee and back fixed, so he is a stay at home day with my 3 yr old grandson. I cant be the grandma I wanted to be, I'm too tired and I'm too weak to even pick him up. OK everyone can tell me all the things I have to be thankful for and for the small amount of time I see them all I am truly grateful, but I spend 40+ hours a week alone with my dogs and the idiot box.
Thank you all for listening, I feel a bit lighter mentally having put everything down in words, and it killed some time.
Kathy55(usa state of Delaware)
