Everything

[Guest guest]

Hi everyone,

I apologize I have neglected to post but do sometimes read the posts.

I know there has been some trial and tribulations for sure. I hope

everyone in hurricane country is safe and I will be thinking about

you.

My husband has been desperately looking for a teaching job over the

summer and we have been wrapped up in that...still no luck though

much to our shagrin. BMT on hold for now and taking my Gleevac like

a good little CML'er. I'm having the hardest time with my

oncologist. I think they're not up to treating me. I had a hard time

with all the side effects but doing better just out of shear

determination. I guess the biggest problem is I feel " soggy " . I

also did get my 6 month bone marrow but they didn't do a PCR like

they did on the initial bma! How is that even comparable? I have had

ONE FISH DONE! I couldn't get the lab to do the correct lab test and

the doctor just kept sending me back with the order etc. My one FISH

test was less than 0.5%... which was negative given the parameters.

The FISH on the BMA was negative too but I can't help wondering what

a PCR would have shown. I don't have ins still so It's hard

advocating for tests.. they just don't listen! They have said that

I'm in remission...not really specific and I'm suppossed to have

blood work done in the next month again. So, I need to figure out a

way to get the lab to do the right test this time.. they kept doing a

PCR but it was the one that didn't show the % of CML cells just that

I was " CML pos " I was thinking of calling LLS to see if they could

somehow help. I don't have the means to go to the oncologist next

month either. I was on a county program that did pay for specialist

but funding was lost due to budget cuts in our state etc. (NV). I can

go to a clinic for free but they are dumber than door knobs and I

have a better chance of being diagnosed properly by my 7 year old

daughter!! Thoughts?? OH, contacted City of Hope and they wouldn't

set any appt unless I had some type of ins. I would go to anyone who

has a clue... I have feeling things are not being managed right. It's

been 10 months since I've been diagnosed. Thoughts?