You are here

Sydney recommendations?

Hi all!

am trying find a Hamotologist in Sydney that will give me another go on low dose Sprycel.My former doc doesn’t want to go there and my new one is pushing for Tasigna and am feeling quite lost and abandoned as no one is monitoring me at present as I continue taking 300 mg Glivec.Can any Australians in here recommend a good Sydney Doctor please?Can I just start myself on Sprycel again,as I have a jar here,or do I require monitoring?Thanks for hearing me and God Bless everyone on this forum.

Commenting on my own post.Hope someone responds!Saw original Haemo.going start 50mg Sprycel from tomorrow Thank God!I will take Vitamin D,as have noted its importance and try add tumeric...Can anyone respond and let me know best time of day to take it please?am feeling grateful...God Bless 

Hi Tanya ,I take my Dasatinib at bedtime ,I take magnesium about an hour before bed,and in the morning .Take vitamin D3 in the morning along with vitamin K2 best to take both ,just started on vitamin B12 because I am a bit anaemic and Turmeric 3 times a day after food,I take these with a probiotic drink .You will probably have a bit of a headache for a few days when you wake up but they pass after a few days .Hope you get a new Doc soon ,best wishes ,Denise.

Denise - Ditto.

Scuba ,I learned from The Master haha .Denise.

If I were in Tanya's shoes ... actually, I was in Tanya's shoes. I was taking Gleevec, first at 400mg. but then had to have it lowered to 300 mg.due to blood suppression - and in the end it was not working for me. I ultimately was switched to taking sprycel - first at 70 mg which, research showed was way too much and impacted me dramatically (myelosuppression) and my doctor didn't hesitate and lowered me to 20 mg after just a week at 70 mg.

And surprise for me, but not my doctor, my CML responded dramatically (although I was also adding curcumin and vitamin D3 by that time). I remain 'undetected' for over two years now getting ready for TFR.

so ... if I were in Tanya's shoes, switching to 50 mg, making sure my blood vitamin D level was over 50 ng/ml and ideally around 70 ng/ml and taking Curcumin, she could very well experience a great CML response with lower side effects. Over time, she could even lower her dose further to 20 mg.

Lowering dose should be a milestone worth achieving. As long as there are no blasts a patient can experiment (with their doctor's approval) to find the correct dose for them. Sooner or later, hopefully sooner, more and more doctors will be moving in that direction as experience shows success. We are ahead of the curve by about two - four years. That's why I like this forum. We learn first.

Thank you Denise for that.Bit concerned that I won’t know how I feel on Sprycel if I take it at night but will have a go and hope to sleep on it.Will keep taking Vit.D and start tumeric too.What is Vitamin K?Thank you for responding to me.love Tanya 

Thank you Scuba,yes quite excited as to how this is going to work and I have an agreeable Haemotologist so that’s great!I may need to stay on antidepressants and start HRT but that’s another story...If Sprycel can lower the amount of CML in my blood,I will be thrilled and yes,it’s ONLY because of this forum that I heard about lower dose Sprycel treatment being so effective,so once again,thank you all and will post follow ups:)

Hiya, apart from the headaches in the morning you probably won't feel anything,hopefully you will feel better than on Imatinib.Vitamin k2 helps move calcium from your blood to your bones and teeth basically so worth taking ,Google it for a bit more information.Also I have a reduced appetite ,Imatinib made me feel hungry all the time so I put on a bit of weight ,now I don't eat half as much and the weight is coming back off ,Good Luck , Denise.

Thanks again Denise,sounds great!hope yr going well too x 

Am not sleeping on Sprycel.Have upped antidepressants and added HRT but still no good.Its menopause adding to issues.Maybe if take Sprycel in morning it may help?Will give it a good go,and if still unable to cope,will have go back on Gleevec.Am literally waking up at least 10 x per night needing to urinate,was same on Gleevec but could cope better.Mental health is crucial,as is sleep...Nothings helping...anyone offer any advice?Thank you

Hiya Tanya ,you really are having a hard time .Sprycel has had no effect on me regarding sleep ,are you taking magnesium about an hour before bed as that can help with sleep.Do you have caffeine if you do try cutting it out having decaffeinated tea ,coffee and coke instead will help with sleep and might also lessen going to the loo so much as it's a diuretic.Not too much chocolate either.You are probably very anxious about starting a new TKI aswell give it a bit more time I think you are blaming it for all your problems and it probably isn't that at all.I know the menopause can be tough going I am past that stage now but hang in there you can do this girl ,things will get better if you can try and relax a bit don't give up keep fighting on .Much love ,Denise xx.

Thank you Denise,you are very sweet and kind to get back to me so quickly.Did you not have any menopausal things going on?I do take magnesium but will lessen coffee and not going take HRT.Going stick with it for a while and appreciate yr care and hope yr going well.love Tanya

Hiya,when I was going thru the menopause all I had was the occasional hot flush used to carry a small battery fan haha .The night sweats were a bit of a bugger so cotton nighty and cotton sheets rather than a duvet and a quiet fan by my bed worked a treat .Also a water bottle with iced water to sip when needed .You are living in a much hotter country than me so can imagine it's harder to cope with .Your country looks absolutely fabulous never been please try and enjoy its beauty and get well soon .xx

Thank you friend,yes it is an amazing place and once again,am grateful for your support and advice!Gotta make the most of everything I guess,and be thankful😊❤️🙏🏻