28 replies to this topic

[Lucas]

hey, congratulations rcase!! 0.01% in 6 months is amazing!! this is very normal and that's not a small fall. you are doing great! i'll go to my endo next month to see what's going on with my thyroid, but i feel ok. no symptons at all.

[mlk210]

rcase - CONGRATULATIONS! As far as the synthroid, I'm on Sprycel and Synthroid, and I do separate them out, but I know you have to take two pills a day whereas I only take one. I know you can't eat anything with Synthroid for a half hour before and after and I believe it is also for any other medication. BUT I don't know for sure. I know there are a few people on here that take both Tasigna and Synthoid because I had formed a question once on this board months back. Hopefully they'll chime in. 

[Billie Murawski]

rcase,  One of my biggest bitching is when we go to another doc and they have no idea what a tki is, pcp,cardio, and a lot of others some of them don't even know what cml is. These doctors are supposed to treat a lot of side-effects that are caused by tki's. I always explain to the nurse when I make an appt and I tell her the doc might want to read up on my disease a bit or call my onc. When I had the pe I was in bad shape I was really having a hard time breathing so in the er that's when they called the doctors in and they asked a zillion questions go figure.

[Louise1403989338]

I am currently on 50 mg of sprycel.  Almost as soon as I went on sprycel I had a problem with thyroid, went into early menopause and basically didn't know whether it was the cml, tki, age, stress, etc. causing havoc over my body.

 

I went to a nutritionist, went to an endo, and my primary doctor.  I was prescribed synthroid. I took synthroid for a while, didn't feel it really helped me and  I also read about synthroid and I didn't like what I read.  

 

I went to a local compounding pharmacy and found a "wellness doctor",  I am now taking armour thyroid.  I take 120 mg a day.  They started me slowly on 30, getting tested every three months. I have recently be put on 120 mg and finally feel better.  I just seem to have more energy.

 

I also take vitamin d3 with k2, I had low vitamin D, about 27 after supplementing with 1000 mg a day.  I take between 5,000-10,000 a day.  I take the curcumin everyday.  I was not as religious with this but have become more strict with this and take the 8000 mg a day.  4000 mg in the morning, 4000 mg in the evening.  I no longer take any tylenol or anything else for pain and/or headache.  I take 400 mg of magnesium and 1000 mg of vitamin c.  I have been pcru for about 9 months.

 

I go to a "cml specialist", about 9 months ago he said to me "keep on doing what you are doing".  I left there and said to myself "really????" this is all you have....????? I have bone pain, and lack of energy etc.  I really fine tuned everything I am doing and the pcru just seem to finally get there.

 

I am a true believer in what Scuba said in the posts.  You need to build your own wellness team.  My primary doctor detected the cml.  She basically sent me to an oncologist who specialized in breast cancer.  I did research eventually and switched to a specialist in CML.  However, I have ONLY been on sprycel, and if I started with my "cml specialist" I would be on gleevec, personally I am happy to be on sprycel, although there have been many side effects.  

 

 

 

 

I got more serious, 

[Gail's]

Louise, just curious, was your first onc in Oregon? Sounds like same onc I have who specialized in breast cancer and recently became hematology oncologist

[Lucas]

hey, RCase, i just came back from my endo and all my thyroid levels are normal now. that's crazy!! how are you?

[Floa7]

I have been on Tasigna since Jan 2015,The Onc keeps checking my TSH, last time was 1.2, she never checked my T4. I have had a goiter removed from my thyroid around 8 years ago. But no thyroid problems then.

 

My BP was 120/62 Onc said  the 62 was low, so ordered an EKG in three weeks. If it is so low why am I waiting 3 weeks?

 

I also have arthritis and taking Aleve for that now. Seems like I am now holding fluid and  BP has gone up.

 

Its a never ending battle, especially when my son who lives with me also has CML.

[rcase13]

hey, RCase, i just came back from my endo and all my thyroid levels are normal now. that's crazy!! how are you?

Doing good. My thyroid levels shot real high then crashed low. I take Synthroid (generic form) and seem to be doing fine. I have another appointment at the end of the month.

[Lucas]

nice to know you're doing fine, rcase! it's crazy how those hormones can change quickly.

Floa, hope everything can settle down a little for you and your family. good luck!