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having a bad day

Hi All

Can i ask if side effects etc ever go away, i'm usually really positive about my CML, but the past few days i am really struggling. My legs, fingers, toes and arms really ache and get cramps i'm beginning to think that its more than the CML as it was this reason i found out about my CML but i had these prior to Gleevic just that they have got worse since taking the meds. I feel really low at the min, is this normal as I am usually very positive and upbeat but can't seem to shake this for some reason and just feel like crying (although i havn't yet)

I am struggling with the tiredness and working full time, and just to top it of, DLA have now told me i am not entitled so any hope of reducing my work hours is out the window. Oh and to top it of i am soooooooooooo cold constantly.

I also suffer with nausea and i'm not sleeping well due to the cramps so any advice would be really appreciated.

Sorry for the whinge just had to vent it somewhere and hate worrying my family and friends with it as they worry enough.

again sorry i know there are people so worse of than me

Naomii

Hi Naomii

 

Sorry to hear you're having a hard time coping with side effects. I was the same but you're body will get used to the glivec and things will get better. I have a really strenous job and feel tired and ache a lot but the best tip i got was to listen to your body and to sleep when you're tired. I know it isn't easy to do sometimes but please stay strong and you will feel better eventually. Please also feel free to vent you're anxieties or worries on this forum, there'e lots of kind and helpful member who hae or are in the same boat and find comfort sharing experiences.

 

Take care and stay strong

 

Gary

Hi Naomii

There is nothing wrong with a good whinge! I have a real love hate relationship with the Glivec,  The side effects can be a pain, some people are really lucky and escape without too many and some feel the effects a bit more.  I used to get fairly bad cramps in the early days (I'm three years in now) but after a while they just went, I think it took a good few months and I still get them now and again.  Your right about the cold, I was a cold person before but now I begining to think that i will have to wear thermal underwear for the rest of my life!!  I have even been taking a hot water bottle to work as my office is a bit cold.  

I too get tired and its one of those things you learn to live around, I think most people on the CML drugs get some level of fatigue at times.   What do you do for a job? Your employer by law should make reasonable adjustments for you in the work place, they may be able to look changing some the aspects of your job to make things a bit easier for you.  My employer were really good and moved me into a different role that was less frontline. I was working in housing adivse dealing with homeless case's so it was full on even before the CML.  The job I have now I really like so it worked to my favour.

As for the nausea I make a tea with fresh ginger, I just bung a but of ginger in some hot water and adding a bit of honey makes it taste a bit better.  Taking you pill with a load of food helps too. 

It may be worth appealing the DLA, your local council may have a welfare rights team (mine do) and can give advice on that sort of thing, or get in touch with local advice centres or the CAB.   Thats is def worth giving it a go esp if it means you can drop your hours.

Hope your having a better day today.  

Kate

Hi Kate

Thanks for the advice, having a bit of a better day today. I'm going to go and see my G.P tomorrow well if i can get an appointment anyway, i thik yesterday was the worse day i have had since being diagnosed and i think that i just needed a whinge so thanks again, i will be taking the hot water bottle to work, I work in the substance misuse field and to be fair i love my job and my employers are great with me, just think i let everything get on top of me a bit, will see what my G.P says tomorrow and i am going to ask them to send me for tests or something on my legs or as a minimum give me some sort of pain killer.

 

Thanks again

Naomii x

Thanks Gary much appreciated, i'm feeling a bit better today. Hope your well

Naomii x

Hi Naomi sorry to hear you were fed up the other day and glad you're feeling a bit better. You've helped to keep my spirits up when I was diagnosed so just wanted to offer my support too! I'm not expert on the aches and pains but I think you're right to see if your doc can give you some pain relief to help for now, there's also some good recommendations from others on the forum such as magnesium oil- maybe something to think about. As for the cold I can totally sympathise! Hot drinks, hot baths, thermals, hot food (soups are a big one for me- homeade good as can freeze also - may be easier to tolerate and help when not feeling up to cooking).For nausea - I agree with Kate also ginger tea is good ( I buy it in herbal tea form -but the its probably cheaper and just as easy to use the real thing) and tablet after main meal. Jo x

Hi Naomii,

sorry to hear you are still suffering from muscle cramps etc. How long have you been taking imatinib for now?

If you continue to suffer this level of pain then maybe you can consider that you are intolerant of imatinib and might do better to change to one of the 2nd gen drugs? Is there a possibility that you could discuss this with your consultant? I cannot remember where you are treated but if it is at a specialist centre then I am sure they would at least consider changing your therapy.

Meanwhile- keep warm and invest in heat packs (good for work too is you have access to a microwave).

Consider vitamin/mineral supplements - see my post on this- especially B vitamins and magnesium. I use magnisium oil but some people might prefer to take it orally. There is a lot of research that points to low levels of magnesium having a detremental effect on health in general.

Best.. Sandy

 

Hi Naomii

Hope you get an appointment with your GP and they are helpful.  I seem to remember from other posts you are on a clinical trial, you could try talking to your drugs nurse and see if they have any advice, I'm on a trial and I talk to mine when stuff crops up. My trial nurse is normally helpful. I seem to remember somebody telling me to drink tonic water to help with cramps, you could always add a bit of gin!!!  Another thought about the cold is having an electric blanket, it may even help the cramps.  I put mine on my bed last night just have to remember to switch it off before I cook myself. The cats seem pleased by it too.

Sounds like you have a busy job, a fair part of my last job had cross overs in that area so I understand how harder it can make your day when you feel worn out at times. As much as I love working with people with complex needs it does take its toll somtimes, but I wouldn't change it, not unless I win the lottery of course.

If you ever need to whinge just go for it. If you can treat yourself to nice things like going for a massage or put it on your xmas list.  I try and do that when I have the spare cash.

Hope the GP goes ok.

 

Kate

x   

 

Just wanted to say thanks, I feel loads better. Went to my G.P loads of use he was not, he seemed to panic, and tried to tell me I was depressed in which I made a joke so I think that changed his mind. He has given me amatryptalyn (which I'm not taking until I have spoken to my nurse) I'm gonna go down the vitamin route initially and speak to my consultant. I'm still convinced that the problems in my legs are seperate to the CML as I had them prior to Glivic. I have been on my meds for about 9 months. Anyway enough going on now. Thanks again all u sure know how to cheer some one up

Thanks
Naomii x