Very Scared and Confused...

Hi Philip I am so sorry for your pain. There are others here way more expert than me but searching the info sites I use, low vitamin D was suggested as a possible source for bone pain. Can you have your level tested? Also an anti inflammatory diet, avoiding sugars, dairy, gluten was recommended. A good anti inflammatory supplement to take is Curcumin. you need to take  a high amount, at least initially to make a difference. If you search for Curcumin  here you will find discussions about it.

My husband has CML,  and I bet your wife is just like me, worried about you, wanting to help and look after you, so don’t at all feel you are being a burden to her by sharing your pain. It’s much better to do that than bottle it up. That is what a marriage is all about. 

i really hope the  new TKI will help you. my husband is on Sprycel and we are just trying to reduce his dosage to avoid some side effects. I have come across many patients who have found their first TKI has not worked or have had too many side effects but by changing dosage or TKI, can get there in the end. 

You sound pretty young and it does seem that the younger you are, the tougher the time you may have initially. 

Take care of yourself and good luck with the new TKI.

louise 

I am on Dasatinib and have been since I was diagnosed in October 17.  The bone pain is significant but I've started taking Curcumin/Tumeric and also magnesium.  I also have a Bowen massage/treatment every month.  You can find your nearest Bowen practitioner online.   All three things have helped me with the pain.  I used to wake up 4 or 5 times a night with pain, but now I am sleeping through much more.  I also walk every day for at least an hour.  

I would try to cut down on alcohol as much as you can.  That being said, I still have a glass of wine once a week/fortnight. 

I do hope that a change in TKI will help you.  If it doesn't, I would urge you to put pressure on your consultant.  You don't want pain killers as such, but you do want a TKI that works better for you than what you are feeling right now.

You can't change having CML (god knows we would all like to!!) but you can change your treatment to one that works for you, not against you.

Regarding the rash from Tasigna, it depends on what kind it is - Tasigna can do different things to the skin.  For dryness, a skin moisturizer works well; for folliculitis, your dermatologist can prescribe various different washes and topical antibiotics that help; for petechia, there isn't really a whole lot you can do because the TKI is the underlying cause. 

What is your PCR trend?  Perhaps you could start talking to you doc about dose reduction if you are at or below MMR.  I started on 600 MG/day of Tasigna but am now on 150 mg/day due to some pretty nasty side effects.  I have been bouncing between undetected and <.003% for almost a year, so 600 mg/day was way too much.  My side effects are much more tolerable now and some have gone away.

Good luck - try to stay positive by focusing on the good things in your life.  It's hard some days, but you have a disease that is controllable and with time and proper dose titration, you can reach a "new normal" life state that isn't all that different from your pre-CML life state.

Thank you I have some and will start on it again. It didn't work for the Gleevec but may work for the Tasigna I just started. I'm also ordering Queesy Drops the pharmacy gave me a sample of some and they worked because my stomach was real bad so I used 2 of the Queesy Drop candy's and I didn't vomit so that was a plus. 

Well been on Tasigna 3 days and I'm finally getting used to it as long as I drink a ton of water and eat a few Queesy Drops candy right after I take 300mg of Tasigna . First dose was horrible it knocked me out sleeping for like 5 hours. I woke up drenched in a pool of sweat but every dose after has been getting better. I'm just praying the rash and itchyness don't come for me because it seems like the bone pain is slowly getting less over the last 3 days but I'll see this week when I go back to work Monday. No time off for me my work is busy and I'm backed up for a few months right now. 

Hi Romer,

I had similar problems to you with imatinib, so too switched to dasatinib. 

For what it's worth, I spoke to my haematologist about whey protein after workouts and she says it is no problem. I would stick away from more "exotic" workout supplements without speaking to your doctor though. 

David.