My leukemia's back.

[LittleLakePhil]

Hi Racheal I don't know your whole story. But I came across this forum today while researching why my ducks quit laying eggs.

I was diagnosed with CML leukemia in 1995. I first underwent chemo which didn't work. I eventually had a non related bone marrow transplant at The University of Michigan BMT unit.

Although this a probably was the hardest part of my life it was worth it. It allowed me to watch my kids grow up and so much more. I was on Immunosupresstives for about 24 months give or take.

I bounced around reading a few comments here and there as I don't have time to read all 2000+ comments. But you seem to have a lot of supporters and now you have another. I'll keep you in my thoughts and prayers.

If there are any questions I may be able to answer I'll give it my best......

.....Phil

 

[sourland]

Hey, Phil, welcome to BYC and to this thread. 20 years healthy for you! That's great, and exactly what we are wishing for Rachel - she's an inspirational lady!

 

[donrae]

Phil! It's great to know there's light at the end of the tunnel...sometimes I wonder.


so, appt yesterday. I love my doctor, the man is just scary smart. I think he has to consciously dumb down everything he says so we can understand him, but he does a great job explaining things. I love that I learn something every time I talk with him.

He's going to try a new medicine for my mouth, a steroid ointment. It's doing a bit better, and my appetite and food tolerance is improving. I'm ambivalent about that....it was bad to not be able to eat, but as someone who has been overweight all her life, the effortless weight loss was pretty cool!


And the lungs. Finally felt like someone took me seriously. He thinks it's an inflammation pneumonia referred to as BOOP . they'll set up some modified pulmonary function tests to confirm the diagnosis. Then, treatment is Singulair, Zithromax and I think Flovent mdi. Not sure how long the treatment is, but he says they get good results. This is pretty common with transplant patients after a respiratory infection, I guess.

so a little validation is good. Now I don't feel so bad for getting short of breath and coughing when Honey and I go on our walks. Eager to start treatment and see improvement.

 

[sourland]

Always a good thing when someone says, "Hey, this is what the problem very likely is, and this is how we will address the situation."

 

[LittleLakePhil]

I couldn't eat for weeks after my transplant. I went from 165 to 112 lbs.

The anti rejection drugs make everything taste like clay.

But once I started eating I couldn't stop....

I still take predisone on and off ( mostly in the winter) for Asthma and COPD and it still has that effect. Makes me real hungry but food taste is not optimal.

Doctors are scary smart that's why they are DRs...but you pretty much have to trust them...its what they do.

 

[donrae]

Always a good thing when someone says, "Hey, this is what the problem very likely is, and this is how we will address the situation."

It was so refreshing! And he didn't even skip a beat to think it over, he just listened to my symptoms and did an exam and went right to....well, what you said. Lined out treatment, discussed doing a burst of oral steroids but decided to hold off (yea!) and we were good to go. Sometimes I wonder why I go see the local guys every week. I mean, they're nice enough, but I can get nice anywhere. I just don't feel the medical care is that great. Well, it's what I've got for the moment, and it beats driving to Portland all the time.

 

[donrae]

I couldn't eat for weeks after my transplant. I went from 165 to 112 lbs.

The anti rejection drugs make everything taste like clay.

But once I started eating I couldn't stop....

I still take predisone on and off ( mostly in the winter) for Asthma and COPD and it still has that effect. Makes me real hungry but food taste is not optimal.

Doctors are scary smart that's why they are DRs...but you pretty much have to trust them...its what they do.

I lost right at 10% of my body weight post transplant.....and then gained it all back

.

Honestly, not all doctors are that smart. That's why I was grateful to have the University available, cause the local guys are good for a lot, but not something super specialized like this.

 

[Blooie]

I lost right at 10% of my body weight post transplant.....and then gained it all back

.

Honestly, not all doctors are that smart. That's why I was grateful to have the University available, cause the local guys are good for a lot, but not something super specialized like this.

You have had some doozies taking care of you from time to time, Rachel, I must admit!

 

[lazy gardener]

Welcome Phil. Good to visit with someone who's come out on the other side of it. Rachel, I'm so glad your doc was able to figure out your mouth issue and outline a treatment plan. Looking forward to better days ahead.

 

[1FlewOver]

I'm a little freaked out now after reading a 58 page report on my Cancer...and not only the frequency of the areas I'm having problems as a source area for my paticular Cancer, but also, the frequency at which this paticular Cancer migrates from where it was originally diagnosed......

Crap!!!!!!! That's not enough, but just studying the medical drawings, and the location of salivary glands....(where my Cancer was diagnosed) ....and where I've become lumpty dumpty....it doesn't look good....Oh well....I'm just gonna get there sooner ....Y'all will be along eventually....