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Massage - Nilotinib

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Hey guys,

I have been having some joint pain mostly mild. I noticed a week ago left side of my neck/shoulder near the joint is achey. As well in some other minor places.

Ive not seen anything to suggest I can’t get a massage (maybe stay away from the oils?). I asked one of the nurses at my pre-chemo about complementary therapy said she’d ring me back 2 days ago but didn’t so looking to get one sorted myself.

Another question slightly off topic now that my spleen is back to normal is there any exercise that’s off limits. I used to do some weights and cardio but didn’t want to do anything that makes the disease or my recovery worse?

Thank you guys.

Alex

 

 

 

 

Hi Alex,

I think massage and exercise sound like great ideas!  I'm thinking they are healthy activities and should be beneficial to your fight against CML.

Kirk

Hi Alex, massage is a great help for stiff muscles. I don't see any reason to avoid any oils or anything. I suffer from stiffness too, not too bad really and probably just part of the ageing process! I find yoga ot be really helpful too, really helps stretch out some muscles. Worth a try maybe?

David

Hi Alex

I would strongly suggest going for it and getting the massage done!  However, I have a cautionary tale to tell that might help you:

Six months after my diagnosis, I decided to book myself into a Hydro Centre here in South Africa for two weeks of rest, relaxation, massages, healthy eating and hydrotherapy.  It is in Stellenbosch near Cape Town and 1 200 km from where I live, so I had to take a flight there.  Imagine my surprise when, after telling them I have CML, they refused to give me the massages and the hydrotherapy!  Apparently there is a widely-held misconception that massages and hydrotherapy can spread blood cancers due to their effect on the circulatory system.  

Fortunately, I was able to get in touch with my haematologist, who immediately faxed through her medical advice: there is no evidence at all to show that spa treatments are contra-indicated for CML.  When they received this letter, they immediately allowed me to have the treatments and they helped me a great deal, both physically and emotionally.  Apparently the centres are required to cover themselves legally before they offer such treatments!

The two weeks at the Hydro were truly one of the best experiences of my life and I would strongly recommend these treatments to any CML patient.

I hope this helps!  Good luck, Alex.

Martin

Hi Alex

I would strongly suggest going for it and getting the massage done!  However, I have a cautionary tale to tell that might help you:

Six months after my diagnosis, I decided to book myself into a Hydro Centre here in South Africa for two weeks of rest, relaxation, massages, healthy eating and hydrotherapy.  It is in Stellenbosch near Cape Town and 1 200 km from where I live, so I had to take a flight there.  Imagine my surprise when, after telling them I have CML, they refused to give me the massages and the hydrotherapy!  Apparently there is a widely-held misconception that massages and hydrotherapy can spread blood cancers due to their effect on the circulatory system.  

Fortunately, I was able to get in touch with my haematologist, who immediately faxed through her medical advice: there is no evidence at all to show that spa treatments are contra-indicated for CML.  When they received this letter, they immediately allowed me to have the treatments and they helped me a great deal, both physically and emotionally.  Apparently the centres are required to cover themselves legally before they offer such treatments!

The two weeks at the Hydro were truly one of the best experiences of my life and I would strongly recommend these treatments to any CML patient.

I hope this helps!  Good luck, Alex.

Martin

Hi Martin!

Many thanks for your recommendation. I’ve only been on Nilotinib for about 6 weeks or so so it’s all very new to me. And raw!

I’d say the joint pain is more prevalent now 6 weeks in and i’d imagine that’s because the medicine is getting deeper into my system through my muscles and into my bones and joints. At least that’s my hypothesis as I am no doctor lol.

Yes I’d imagine that these places do lots of “bottom” covering for insurance claims etc. And like you my understanding in this case CML it is fine and no eveidence as you and your doctor to suggest it’s not OK.

I will with your advice be cautious of experiencing something similar!

All the best to you and your CML.

Alex