Hi , I have been on 400 mg Imatinib for 9 months The side effects seem to be getting worse . The nausea last for hours , swinging from horrendous diarrhoea to constipation.not knowing from one day to the next what it will be . Terrible bloating and wind . So tired all the time , so I’m eating all the wrong food for energy that I have put on a stone in 6 weeks . The pains and cramps in my legs are so bad , I am on tablets for cramp ,some times I get up to the toilet in the night and you think I had walked up hundreds of stairs instead of 10 steps .. I’m sorry to moan but I don’t know if I should ask to change to the one beginning with d . I struggle with eating at the same time of day due to my work pattern . So take it at all different times of the day where as the d one you take with out food and I could take at the same time every day . I recently missed a week due to my dad being in hospitial , I couldn’t cope with not knowing how my bowels would be . But within a couple of days I felt like my old self . I feel like such a hypocondriac . I’m sorry for going on , but I feel like I am making a big deal out of nothing when I talk to my consultant .. am I ? Should I just put up and shut up . Thankyou for taking the time to read this .
You are here
Continued side effects
Categories:
I'm sorry to hear you are having such a bad time. First question is has the imatinib got your BCR-ABL down? What level are you at? Also where are you seeing your consultant - if you are UK based have a look under the Patient Info tab above and look at the specialist centres. Some consultants see very few CML patients and are not aware of the latest developments. Ideally you want your consultant to be in touch with one of these centres. My consultant (in Chester) did some training at Liverpool, and attends a qurterly update meeting on CML with them.
There is a lot of data that dose compliance is very important in getting a good outcome. I keep my imatinib with my toothbrush. I always brush my teeth after breakfast, which for me is normally wholemeal toast. That is enough for the imatinib to land on and I have few gastric issues now ((currently on 200mg), and previously when on 400mg. I understand your work pattern is an issue, but you are dealing with a condition which needs the best attention.
Cramp might be helped by supplementing with magnesium. There are capsules you could take, but I used magnesium oil which is rubbed onto the skin in my case after a shower. While we're talking about supplements you might want to consider Vit D3&K2. If you search the forum on vitamin D you will find a lot of data about why that is a good idea.
The weight gain may be partly caused by water retention (oedema) which is a known side effect of imatinib.
Most people find that the bone pain goes away after a few months. The fact you are still suffering so badly 9 months in, plus the possible oedema, for me certainly would suggest that a discussion with your consultant about changing to dasatinib is appropriate. Assuming you are UK based serious side effects are a valid reason for the NHS to change your TKI; if it suits your schedule better and is more lilkely therefore to give you better outcome.
I am 15 years into imatinib; the bad side effects settled down in 3-4 months. After more than 10 years I reduced my dose to 200mg, and am stable with BCR-ABL undetectable and no issues with cramp or gastric upset. Consultants are now generally willing to consider dose reduction after perhaps 5 years; much more is known about this now than 10 years ago.
I hope that is useful.
Alastair
Hi thanks for replying . My bcr in June were 3.54
in oct they were 0.74. So it’s working well. I’m in orpington Kent under the princess royal chartwell unit . So with those good results I don’t know if I should mess around with it as it’s working well. I’m glad everything is going well with you .
I really think you should talk to someone about the side effects. If the unit where you are seen has a nurse practitioner who supports CML patients (best practice is that they should) that person may be a good place to start. Tell them about the side effects - don't under-state how bad it is - and see what they say.
There was some research (abstracts on this page) about 8 years ago which showed a very wide range of serum concetration of imatinib in patients on the standard dose. It may be that you are one of the people who has a very high concentration in your blood, which is helping with the results but making your life difficult.
Based on reported experiences of people on this forum dasatinib is likely to work at least equally well, and if you are having to take breaks from imatinib a change in medication should be considered. As I said in my post above dose compliance is a critical factor for successful treatment. If imatinib side effects are sufficient to make you miss doses, they should be suggesting that you change.
Hi Russell girl,I feel your pain ,I too had all these awful side effects .Had to give up work because of all the stomach issues ,had terrible itchy rash ,and hooded eyes .I never looked or felt like myself .I changed to Dasatinib 50 mg NOT 100 mg as suggested that’s too toxic ,and practically overnight all my side effects started to disappear.You get a mild headache in the morning for a few days but after breakfast that had gone .So I suggest you move onto Dasatinib you will feel so much more normal ,more like your old self .Good luck ,Denise.
Hi Alastair, nice to hear from you .Yes all good thanks ,been undetected for about 3 years now I think .Been on 10 mg Dasatinib for nearly a year now so thinking of trying TFR in the new year .Just had my 5 year anniversary at Christmas .Hope you are keeping well .Happy NewYear ,Denise.
Hi, I take mine just before bed you don’t have to think about it then, it’s done .It doesn’t stay in your body as long as Imatinib either I believe so it’s so much better for you .Denise.
Felix
if I may ask you question as I saw your post. Been in Dasatinib for 5 with BCR at 0.003 but still taking 70 mg of the drug. I am just curious if you can share, is that how fast did you lower dose and was what was your BCR levels as you did. And also what is it now under 10 mg or you have achieved a full molecular response. It’s an interesting thought we all have about ending medication and if it’s possible. Is that also a plan you have discussed with your doctor. Reason I ask as I am having a lot of new side effects with Edema and other issues lately that have escalated with no evident causes or changes by me it’s a debate I have had about lower medication as I hear of several people on here speaking of an immediate relief of many symptoms on a lower dosage
Thank you
Appreciate any answers and have a terrific new year.
Yianni
Hi, with your BRC ABL being so low you only really need to be on 20 mg now .As mine went down I gradually reduced my dose .I started at 50 mg after changing from Imatinib,then 40 mg ,then 20 mg.Been undetected for a while now so then I started splitting my pills and take 10 mg every day .I have to say i didn’t discuss reduction with my doctor and did it when I thought the time was right for me then told her I had done it .She was never happy ,but it’s my body and I wanted to try .I know she doesn’t want me to try TFR ,she says I can’t because I am on my second TKI,but she’s not a specialist so that’s rubbish .Hope that helps a bit .Any more questions please ask ,I don’t mind .Regards ,Denise.
Hi Denise yes I'm fine thanks. I had 4 weeks off my imatinib in July/August while the wound from my hip replacement healed. The hip problem dates back to a sports injury when I was a teenager. Back on 200mg since then and test results have been undetectable all the way. I'm extending the range of dog walking now the hip doesn't hurt at all - the dog and I are both getting fitter.
