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advice please

Hi all.

Merry Christmas and all the very best to everyone. Hope 2014 is a healthy one!

I just wanted to ask fellow CML'ers if they have experienced any of the problems I have been suffering from.

I was diagnosed in June this year and begun tki therapy with 400mg Imatinib daily, after a slow start my PCR dropped to 5.7% by the 3 month marker and my most recent at 5 month was 0.35% and I am due my most recent PCR in early January.

So my team are happy with progress to date. However I have been getting a lot of other problems, I've just turned 34 and 6 month prior to my diagnosis I was very fit, half marathons, cyling, weight training and full of energy for work. Fast forward a year and I have been told after an MRI on my knees I have patellofemoral arthritis, and that can't be repaired also (I am awaiting a 2nd opinion). My lower spine is in pain even though an MRI showed my back to be normal. Basically it seems I have crepitus, stiffness and pains in my shoulders, lower spine, my hands, and mainly my knees.

Everyone doesnt think there is a link between the arthritis, the CML, the imatinib, the back, shoulder and joint pain but I can't understand how my health has took a sudden turn for the worst so quickly. It's like my body is under attack and my bones are not dense or strong. Is there a test for your bone density and quality?

I have just had a little boy 4 weeks ago and I can't help feeling sad for him and my wife that Im struggling to hide being in pain. I have really started to worry about the future recently also after being so positive around everyone.The knee problems are worst and could potentially effect my current job and prospects.

Has anyone else had a similar experience, could Imatinib be causing an issue, could the CML be linked to my crepitus and joint popping, cramps and pain. Could another TKI posssibly be a consideration?

I feel so lucky that I am able to take Imatinib to control what 15 year ago was a bleak outlook, just wondered if anyone could help with any info or similar problems?

John

John,

firstly, i'm sorry you're having to deal with the symptoms you describe; i'm a similar age to you and I only have a fraction of the cramps/pain you've identified and that sucks bad enough. I had bone pain in the first 6 months on Tasigna which subsided but i still get minor muscle cramps from time to time. Gleevec is known to cause bone pain and muscle cramps and your side effects seem to bordering on intolerable if it is Gleevec causing or agitating them.

Quite frankly I'd be looking at changing TKI. I think it's important to rule out Gleevec as causing or contributing to your symptoms; however, you're probably too early in to have a TKI cessation as you've not got your MMR result yet (although based on your trend i'm confident you'll see it in January) - ask your onc if a temporary cessation is viable under their supervision. If cessation as an experiment is not an option the logical progression would be to Tasigna as this is NICE approved and easy to prescribe. However, Tasigna and Gleevec are from the same family so this might not reduce your symptoms sufficiently if the TKIs are contributing - Tasigna does have a reported reduced side effects profile compared to Gleevec. Should Tasigna not be a good fit the next sensible option would be Dasatinib (Sprycel) which is available through the cancer drugs fund.

In short, although the docs may 'think' Gleevec is not contributing to the pains/arthritis my opinion is it's important to either confirm or eliminate specific TKIs as a cause/agitator of your symptoms. If the docs won't prove cause through elimination then it's guesswork IMHO.

I'm not a medical professional, just an opinionated patient and the above is what i would do in your circumstance based on my experiences to date.

Best wishes for 2014

Chris

Hi John,
I was diagnosed just over a year ago aged 36 and am on Imatinib. I too have had some issues with my knees, at one point I was on crutches due to pain and swelling. Consultant did not seem to think it was connected to CML or Imatinib and more likely the result of an injury (I had not injured them as far as I was aware) Anyway, the knees have got gradually better but are still weak and the crepitus remains. I had never had any knee problems prior to dx and like you was very fit and healthy.
I hope your situation improves and congratulations on the arrival of your baby boy.
Sarah

Hi Sarah/Chris

Thanks for getting back.

Sarah, its very strange, but at least I'm not the only one. Did you get an MRI? I was blown away when I had the results to mine, so much so I have asked for a 2nd opinion. I was told I was fine after X Ray and by MRI report via the orthopaedics secretary, but told I had problems in a 5 minute appointment with the consultant himself then shown the door. Bizarre. The crepitus was never there and my knees like the rest of my body were fine, no one is linking the CML but it seems very coincidental I begun to get problems with my lower spine, shoulder and knees which rapidly got worse just months before getting bloods and being diagnosed with CML. Hopefully you continue to improve and things pick up as your only young too! Thanks for the congrats.

Chris, good to hear from you again. Everything you say is sound advice. I just feel I need a plan of some kind, a process of elimination. Regarding TKI, my team have always said a switch to Nillotinib was on the table should I need/want it. I just wanted to see how I got on with Imatinib. If they deem my joint pains, aches, crepitus are from or increased via this TKI and suggest a change maybe its time to listen.

All the very best for 2014!

John

Dear John

I'm sorry to hear of your problems with your joints. That must be very tough.

How are you doing now?

If you think it might be an adverse reaction to Imatinib, you can report this for yourself on a 'Yellow card' (so called because they were done, long ago, on yellow cards) - it doesn't have to be done by a doctor. The link to do this is:

http://yellowcard.mhra.gov.uk

(We have actually been encouraged to do this by our CML specialist re. a drug interaction with Imatinib.)

If Chris and Sarah report their experiences too, then that is 3 'yellow card' reports which perhaps will trigger someone into looking into it properly. Rare adverse events are only picked up by individual cases being reported.

best wishes,

Linda

This may be a bit late, but Prof. David Barrett at Southampton is an expert on this. He performed surgery on both my sister-in law's knees for patellofemoral arthritis and resurfaced my wife's knee after a decline in her Oxford knee replacement.

http://www.professordavidbarrett.co.uk/

Of course everyone is going to be different and I'm sorry to hear of the difficulties you're having.

I have never ever been on a support group before or even if it comes to that talked to many people who even have leukaemia and really because I just didn't want to have in my mind what "might be" and then start "infecting" myself with something because someone told me I might suffer from something... does that make sense? I might not be expressing that very well!

However having stumbled across here, I thought it might be more encouraging to recount my personal experience and by way of reassurance for those who might just have started this drug or just diagnosed.

I was diagnosed 20 years ago. Had a range of treatment and then ultimately a MUD bone marrow transplant 18 years ago and then 13 / 14 years ago went on imatinib (Glivec) and ever since then have been on 400mg per day.

As far as I'm concerned it's an absolute wonder drug.

And now for some context I'm nearly twice the age of the original poster: 63 years of age and own an Equestrian Centre and work as a Horse Trainer and Horse Riding and Carriage Driving Instructor. I'm involved in the sport of Horse Driving Trials... all VERY physical stuff and VERY hard on bones. Frankly I could talk for England on bones to break and damage when you're around horses. There's not many people who do what I do now and have done over a life time who don't have secondary joint disease and I've got knees that often make me wince if I've been inactive or not doing what I ought to be doing in terms of conditioning. And... they're no worse now than they were when I was 42 and just before I was ever diagnosed. Believe me when I tell you I'm a heck of a lot better than most of my age and even a heck of a lot better than many who are 20 years younger than me. I also have a lovely mechano set of plates, fixing and screws in one ankle and leg as a consequence of serious injury and a bad fracture and none of that is anything at all related to having leukaemia or the drugs I've taken.

It's a consequence of my genetics and what I've done with the body I have.

I've approached the issue of joints and conditioning no different to how I would if it were a horse I was training. I try to make sure I'm fit and do low resistance activity to improve supportive structures and I do eat sensibly and including such as nuts etc high in vitamin e and selenium and omega 3.

In my opinion it's really important not to attribute everything you experience to the life saving medication you're on and to seriously consider that arthritis in the knee is a huge problem for a heck of a lot of folks that do sporting activity. As an orthopaedic consultant told me over 30 years ago when I had my first knee problem "knees are shock absorbers and joints and though they should last a lifetime, they really aren't made for a life time of repetitive pounding riding horses, running on roads, playing rugby etc". I'm thinking half marathons and cycling and two predisposing factors ;)

Incidentally I have a lot of horse trainer and jockey friends who highly recommend knee replacement and I'm keeping that ruled in as a serious option for the future.

The only side effects I've had with Imatinib are cramp. And I mean BAD cramp and a tendency to really bad indigestion. Both of which I've managed to manage by making insignificant changes.

For cramp I drink a lot of tonic water because of the quinine it contains and I ensure I have plenty of fluid and electrolytes. For me that means sodium potassium and magnesium. So I eat bananas and salted peanuts.

I managed to sort the indigestion by just changing the time I took the medication and by taking it with a light snack.

You can indeed have tests for bone density. It's something often done for such as those who are at risk of osteoporosis.

Good luck getting sorted.