Hi Everyone..Long time no post..Hopefully will have some news after my onc appointment tomorrow.
I wanted to ask..has anyone had experience of some general dizziness/weakness especially when standing..and slightly painful pins and needles/burning sensation along the skin? I have been on Gleevec 400mg for about 45 weeks.
Kind Regards and Hope the wind isn't blowing too hard where you are today!!
Bil in the UK
hi Bill,
It may well be that you have a side effect of Glivec... i.e rash.... or that you have shingles. A painful pricking/burning sensation can be the first sign of this which is a viral infection and it can also make you feel dizzy and weak. You should try to contact your doctor before your appointment as Shingles can be highly infectious.
Hopefully it isn't as it can be quite painful, but it is best to be sure.
Do let us know what your doctor says... if it is shingles it can be treated quite successfully with anti-virals.
Best wishes,
Sandy
I am a bit of a magpie and I’ve kept various newspaper cuttings about CML and Glivec over the years, mainly for inspiration as well as hope. Well the other day I went through them again, and there you are, Daily Telegraph Oct 2002. Of all the times I’ve read it and only just put two and two together, you are one and the same. Thank you for the inspiration you gave me then and your words of wisdom since. I’ve been on the net, less than two years. I thank You, Elizabeth and all the others involved in running this site, for all your hard work and dedication, it really is appreciated,
Best wishes always,
Les
Hi Sandy..thanks so much for the quick response..what a year it's been since diagnosis. More ups and downs than a ride at Alton Towers.
I thought maybe shingles as well but the sensation is not just on my face but also all along my arms..weird.
Do you know if the weakness is something related to Glivec? I get this horrible listing feeling a bit some days..not really dizzy but "off centre" I call it the Titanic effect and sometimes my legs are quite weak especially when I stand or lean forward. The hemo says I am her "mystery patient" but I am always quick just to put everything down to the medication.
Perhaps I should have taken a prolonged holiday..I never really took much more time off than the usual time from work. In fact the day they told me I had CML, I cried in the hospital toilet and then drove myself to work.
I haven't posted for ages but I check the site frequently. I cannot thank you and Elizabeth enough for having this site here it has been my greatest ally.
Kind Regards
Bil in the UK
Hi Bil
I suffered with pins and needles whilst I was on both glivec and dasatanib. It started after around 4/5 months on glivec and gradually crept up from my limbs to all over my body and even on my face. At that point we stopped the glivec for 3 months.
The pins and needles stopped very quickly and when I went back on the glivec they returned. I was never again on the glivec for more than a couple of months at a time after that.
I also had what I described as a very funny skin feeling...............terribly difficult to describe but I would say that it felt like a flash or flush all over me and it would do that for a while then stop and then come back, days, minutes, hours not real time frame. Very very strange. It, too, disappeared when I stopped the medication.
I did, when the pins and needles were at their worst, have weakness in my hands.
My consultant described it as a neuropathy and he said that it could eventually lead to permanent nerve damage, hence I went on to have a transplant..............but that is my story and I wouldn't ever say that my path is the path for everyone else.
www.caringbridge.org/visit/susanleigh
However, pins and needles can be symptoms of other problems or I guess can be nothing at all.
Let us know how you get on today, all the best
Susan
hi Bill,
the weakness/dizziness you feel may be because you haemaglobin is low? i remember before diagnosis i used to walk down the street in a sort of wavy line.... very strange sensation as you say, the titanic effect describes it well ;o)
anyway, when i found out how low my HGB was -6.9- it made sense. Glivec does tend to keep the red blood cell count on the lower end of the scale. and this can make a huge difference to energy and balance. when i was taking it my HGB never got over 10 (post transplant it is now more or less stble at 12 or 13)
it may also be that you have sinus problems? this can also affect balance.
thanks for your kind words about the website, i am so glad you have found support here.
Sandy ;o)
HI Bill,
David is on gleevec since 9 months. This last month he has started to suffer weakness and dizziness sometimes together with migraine. He has no rush at the moment, but instead other aches all the body.
Until the moment, his doc doesn't take gleevec, despite I really believe is an adverse effect. His blood count is nice, he has no anaemia, nothing that could explain what he is experienced, except for gleevec.
Some patients, reduce their dose or stop gleevec for a while, or switch to sprycel. Hope you can keep on gleevec without problems.
hi everyone, i have not been posting for ages..
i sometimes get these wierd fuzzy pins and needle feelings in my arms and i also feel dizzy.. i feel different wen my haemaglobin is slightly low.. Then i feel wiped out and tired.
my donor is ready and willing to donate his bone marrow to me. He is going in for tests at the end of May and the plan is for me to have a BMT in the middle of june.
best wishes to everyone
Rio 8-]
