Ofatumumab and leg pains ?

[norahmaria]

Hi everyone. I finished 12 months maintainence period of ofatamumab in november 2013 and since then have been experiencing very bad aching pains in my legs and feet, also calf cramps at night. Has a yone else experienced the same ?

[MsLockYourPosts Passed Volunteer]

Any chance that the cause might be a back issue that is aggravated while you are sleeping? You might also want to ask your doctor about testing your Vitamin B12 and D levels as well as whether a mineral deficiency might be causing the issue.

[norahmaria in reply to MsLockYourPosts]

My legs ache after walking, even after relativly short distances, defo got worse since treatment. Will ask about vit tests at next visit. Thank you.

[Haileybury]

I am not sure calf and foot cramps at night have anything to do with treatments. I have been experiencing leg cramps at night, sometimes quite severe, for a few years. I was diagnosed with CLL 8 weeks ago and have just completed my first course of FCR. Leg cramps continue. I only get cramps when I am horizontal and not while playing tennis or walking. It's a real nuisance as no one seems to know how to stop it. David

[norahmaria in reply to Haileybury]

Thanks for your reply david, im the same, the cramps are only when lying down but I have leg pains all the time. I read that after chemo this can happen. Ive had FCR in 2009 and CHOP in 2012. I was diagnosed in 2005. I hope you are doing ok. Keep strong,, sounds like you are a very active person !

[Haileybury]

I'm doing fine, thanks, Norahmaria. Never been ill in my life and never taken a pill until this started a few weeks ago. I suppose that's pretty good for a 75 year old. I'm positive and hope you do well too. David.

[norahmaria in reply to Haileybury]

Good on ya ! The fact you are active and have been healthy all your life will stand you in good stead now to fight cll.

[cllgirl]

I haven't had the same treatment you have, but have had the leg cramps and pain you are experiencing. My oncologist encouraged me to make certain I am drinking enough water and take a magnesium supplement. This has helped me immensely, and only rarely get the leg cramping. I hope this helps.

[norahmaria]

Thank you cllgirl, I know I dont drink anywhere near as much as I should (well water anyway ! ). Seeing my consultant in a couple of weeks so will ask about the mag supplement. Thank you for your help x

[johnpollard37]

I'm also on Ofatumumab (?) and also had pain in the calf muscles; currently between `cycles' and able to walk about normally again. I reported this to the oncologist, who offered no comment. I hope your pains will also lessen between treatments.

[norahmaria in reply to johnpollard37]

Thank you for your comments john. Ive mentioned it to my haemotologist but like yours, no comments. I did ask him directly if it was relsted to treatment and he said he didnt think so. When I was on ofat I was getting cramps in my fngers where they would curl in... very strange as ive never had this before ! Are you having chemo with your ofat ? I had 6 rounds of CHOP with mine followed by ofat for 12 mo ths, finished nov 2013. Doing ok atm fingers crossed. Hope you are too.

[Berrytog]

Hi

I'm not on your treatment but have had cramps for as long as I can remember. They used to be only in the calf muscles but now they are from hip to toe and happen only at night or when swimming. As I have had the problem for years I do not think it is anything to do with CLL. I have found that making sure you are well hydrated helps, keeping your feet and legs warm in bed( wear socks or use a hot water bottle), cut down on alcohol particularly red wine, port etc. and take quinine by pill or a litre of tonic water a day. My problem now comes and goes but after a lot of exercise it seems to come back.

[norahmaria in reply to Berrytog]

Thank you for your reply. I think I defo need to try and drink more water and cut down on the red wine :(. I never had cramp or leg pain like this before starting treatment so I defo think its related in my case tho.

[Cllcanada Top Poster CURE Hero in reply to Berrytog]

Please be cautious about quinine in CLL, it can and does effect platelet clumping... tonic water is mostly sugar...

This topic has been discussed previously here...

healthunlocked.com/cllsuppo....

[Cllcanada Top Poster CURE Hero]

I would suggest the pain and cramps might be from the vincristine in CHOP... I experienced neuralgia and neuropathy on RCHOP... long after treatment, and still have pronounced foot drop...

More

en.wikipedia.org/wiki/Chemo...

This is something you should discuss with your doctor...

[norahmaria in reply to Cllcanada]

Umn very intersting. Thanks chris.

[MsLockYourPosts Passed Volunteer]

In the US Tonic water, like most drinks, including juices that sound healthy, is full of corn syrup, not sugar, so the issue of GMOs enters in. Of course, now most sugar beets pose the same issue. Pat

[Newdawn Administrator]

I found this little article helpful;

peoplespharmacy.com/2010/10...

Newdawn

[norahmaria in reply to Newdawn]

Very interesting article, thank you for sending it. I do have an occaisonal tonic water (with gin !) And sometimes on it own.

[john133]

Hi norahmaria

I had six months of chemo with Ofatumumab and Bendamustine which finished in January this year. I did have serious leg pains and severe cramp for a good while afterwards, this did slow down and at times I did not have any, but it does come back from time to time. I also had bad pains down the top half of my arms which felt like it was coming from my bones and I still suffer from this. In general I still ache pretty much all over but it it is not so bad that it stops me from doing things and getting on with life although I get quite tired.

John

[norahmaria in reply to john133]

Im the same john, ache all over some days and some days im fine. I really do think its from treatment. Oh well guess its better to have this than not have treatment. Cant have all that poison without consequences. Just have to battle on ! Take care

[Berrytog]

Last night was colder than normal and the heating was down so my leg cramps were back but a hot water bottle in the middle of the night helped. I also noticed that with a chill in the air I was up seven times to the loo instead of my usual two, perhaps a chill in the bladder but passing all that urine may have made me de-hydrated and brought on my leg cramps. In addition the pains in my bones/muscles at the top of my arms were a lot worse. It is difficult to draw conclusions as my Ibrutinib trial doctors say none of it is connected and my cramps go back way before I was diagnosed but my bone pain started when I first took my pills. Diet tonic water without juice etc. seems a good low risk option for leg cramp for some of us but in our condition nothing is without risk or problems.

[norahmaria in reply to Berrytog]

Its very strange isnt it. I sometimes ache all over in my bones, not sure if its the cll cells in the bone marrow causing it or followi g treatment. All I know is that I didnt have these probs prior to chemo. Ive stopped mentioning to my consultant now as I never get any response or explanation. Just be nice to have it explained.

[john133 in reply to norahmaria]

Hi norahmaria, I seem to be experiencing the same problems as you. I suffer from these aches and pains and my consultants say they are not connected to the chemo and to see my Doctor. It's very strange that I did not have these ailments prior to treatment. I feel I am just being passed along the conveyor belt without any full explanation of my problems.It's pretty obvious to me that it is the chemo that has caused it.

John

[norahmaria in reply to john133]

What chemo did you have john ? I had 6 cycles of CHOP with ofatatumumab followed by a further 12 months of ofatatumumab on its own (not on any meds since november 2013). I have richters transformation with the cll. Its strange that the doctors dont seem to want to acknowledge there could be a connection with the drugs, just be nice to have it acknowledged that there may be a recognised link.

[john133 in reply to norahmaria]

Hi Norahmaria I had six months of OFATATUMUMAB and BENDAMUSTINE and finished in January this year. Blood counts down to a reasonable level and do not have to see the consultant for three months. I am 71 years now and was diagnosed last June bit of a shock it was and put paid to my travelling for awhile but I am still keeping active but never feel 100% well but learning to deal with it

John

[norahmaria]

Thats good news that your counts are down john. Sounds like you're a very active person and have a positive mental attitude. I wish you all the very best and hope you can continue with yourtravels and make the most of every day.