4 replies to this topic

[VickiW]

morning everyone  :0

geeeeeeeeesh, I am beginning to not like mother nature's sense of humor.  Felt so good after switching to Sprycel I took a mid-level job with census this spring.  Had loads of fun, especially after being paired with a friend to do some quality control.  Long story short we had to do a lot of hiking in to find cabins (can you believe we got paid $16.50 and hour for hiking?) and then we would both be throwing ticks out the windows as we drove down the road (yuch).  Anyway, I missed one and I wound up with Lymes.  I am on antibiotics for it but now I don't know if the swollen knees, painful muscles and joints and fatigue are from the Lymes or a "cycling" of the Sprycel. I haven't had any of these particular side effects return (at least at this level) since switching to sprycel so I don't know what is which!   I know it's not the CML because I just had a Qpcr done and I am still in PCRU (whew).

Also need everyone's help.  My insurance changed FOR THE BETTER and I can now switch to an Onc closer to home.  That's the good news.  Bad news.  When I asked the onc nurse at the new clinic if they used anything for pain when doing BMBs she looked at me like I was NUTS !!!  Pieces of the following conversation went like "I've been doing this for 18 years and never had anyone beg for pain killers or break out in tears", me asking, "have you ever had a BMB?".  You are getting the picture.  Anyway, does anyone know where the threads are where we talk about getting BMB's with/without pain meds and what was used?

By the way, since the antibiotics they have me on are super sun sensitive, I am banned from my gardens in the daylight again!

[Trey]

Previous discussions:

http://community.lls.org/thread/1843?start=0&tstart=0

It may be difficult to separate the symptoms in the near term.

[PhilB]

Sorry to hear about the Lymes disease.

Regarding the BMBs, I wouldn't be worrying about pain relief in your situation - I'd be more interested in knowing why on earth your onc thinks he wants to do one in the first place as you are PCRU?  If the PCR test isn't finding any evidence at all of the little beasties then a BMB certainly won't.  Unless you had some other issues with your marrow or something interesting happening with your non-leukaemic cells in previous tests then I'd simply tell him you're not having any more.  The guidelines say you don't really need them anymore once you hit CCR let alone PCRU.

Best wishes

Phil

[scuba]

Phil - That raised my curiosity - what's in the bone marrow that's not in the blood?  I don't understand why they need to do a BMB at all? 

[VickiW]

Thank you for the link Trey!  Yep, that's the problem.  What symptoms are caused by what.  Since I am almost done with the antibiotics and still dealing, I may have to make another trip to my PCP.

Phil;

thanks for your response too  .  Didn't explain very well.  I don't need a BMB now, BUT, should I in the future I just wanted to know in advance what this new clinic's policy was on providing pain killers.  Didn't know that was an option when I had my first BMB (at dxd they just kind of literally grabbed me and ran) and just don't want to go thru that again.  My current Onc did my BMB a year ago when the Gleevec stopped working mostly to check for possible mutations, etc. (you know the drill-oops pardon the pun-hehehe) and I was very pleasently suprised when he sent me off to "lala land" .  When I thanked him later he just said, "I am not a barbarian.  You've already been thru enough".

It is just so nice to be able to shop around at my leisure now for the right Onc, clinic, etc.  (there are at least 3 within an hour of us now that are in our insurance plan)  I hate giving up the wonderful Onc I have now and I just am not going to settle for anything less.  I wouldn't change at all but those 2+ hour drives just to get there can easily turn into 4+ up here in the northwoods most of the year and if for some reason I have to do another hospital stay, that commute is just too rough on my poor hubby and he hated staying in a hotel last time.

thank's once again everyone for your imput