My leukemia's back.

[N F C]

Thank you so very much. I truly appreciate the prayer support.

Keep us posted on how you're getting along

 

[Alaskan]

For those that pray, please lift me in your prayers. The latest chemo meds, once again, are not working.

Oh Clue! I am so sorry!

Keep us posted on how you're getting along

Yes, please!

 

[getaclue]

I've always been able to pull up all my medical test results through Moffitt's online portal. A few months ago, I noticed the only test results I could pull up, were my CBC's which are one of the tests on my bloodwork. The blood tests for my liver panels was not being posted, nor were the results of my CT scans. Last Wed. when I saw my Oncologist, I had her print out the results of the CT scan, and give it to me.

We went through the scan results, pertaining to the cancer, but I noticed a line mentioning my heart. I don't remember my heart ever being mentioned in any of the prior reports, so it caught my attention, but the doctor never said anything about it, and I saw the word "stable" mentioned a couple times pertaining to the heart, so I didn't think much about it.

Since then, I've paid more attention. The line reads, "Heart and great vessels: Borderline heart size. Prominent calcification of the LAD is stable. Ectasia of the ascending aorta measuring 3.4 cm, stable". The line after that reads, "Mediastinium: Unremarkable".

What the heck is borderline heart size? Did it shrink a slightly? Am I becoming the Grinch? Did it get enlarged some? Was I the Grinch before, and now my heart got slightly bigger? I began researching the part about Ectasia of the ascending aorta. I had no idea what that might be. Well, I've got a little bit better idea about what it is, and was devastated to learn how serious this can be. I haven't even gotten into researching the "calcification of the LAD is stable" portion yet, but I know the other part is serious enough to warrant me getting myself to a good cardiologist.

I don't know if this development with my heart is from the chemo, or if there is something else going on. I've never been on any type blood pressure medication, cholesterol medication, since it's never been an issue before.

At this point, I'm a bit preterbed at my Oncologist for not addressing it with me, AND it's made me question something about the scans, and the way results are reported. Clearly, the focal point of the report is regarding my cancer. Does that mean, when each type of specialist requests a CT scan, the resulting report is geared mainly for the specifics that the requesting specialist is wanting, and less detailed about other things found?

Regardless, my Oncologist didn't say a word about the change in my heart, or mention that, even though it indicates the condition is reported as being currently "stable", I might want to consult a Cardiologist moving forward, to keep an eye on it.

Needless to say, I WILL be consulting with a Cardiologist.

Please continue to keep me in your prayers. I truly appreciate it, more than you'll ever know.

 

[N F C]

@getaclue good for you on taking the reins, these days we all have to be our own advocates. If it helps any little bit, I've had experience with 2 cardiologists (one in FL and one in KY) and they have both been among the very best docs I've had...very caring and thorough. Hope you have the same experience with one.

 

[getaclue]

Thank you, NFC. I went this morning to a distant neighbor's house. She is a nurse currently working in NICU, but for years she was on the board at the hospital, that evaluated lawsuits against the hospital, and doctors. She has the real low, down low, dirty, nitty gritty on the doctors, among other things. She knows who's good, and who's not so good, and who's downright terrible. She was asleep, because she works tonight, but tomorrow is her day off, so her husband is going to have her call me.

She did this for one of our neighbors. I know he (the neighbor) had a difficult diagnosis, and the odds were really stacked against a good outcome. She steered him to a top notch Cardiologist, that successfully did his surgery, with a great outcome.

In today's age, if you don't advocate for yourself, you're foolish. The medical industry is not like it used to be years ago. I'm not saying it's all bad, or that you can't trust anyone, but it's YOUR health, and YOU take the risks, not them, so it's in your best interest to pay attention, and advocate for yourself as needed.

 

[ronott1]

I've always been able to pull up all my medical test results through Moffitt's online portal. A few months ago, I noticed the only test results I could pull up, were my CBC's which are one of the tests on my bloodwork. The blood tests for my liver panels was not being posted, nor were the results of my CT scans. Last Wed. when I saw my Oncologist, I had her print out the results of the CT scan, and give it to me.

We went through the scan results, pertaining to the cancer, but I noticed a line mentioning my heart. I don't remember my heart ever being mentioned in any of the prior reports, so it caught my attention, but the doctor never said anything about it, and I saw the word "stable" mentioned a couple times pertaining to the heart, so I didn't think much about it.

Since then, I've paid more attention. The line reads, "Heart and great vessels: Borderline heart size. Prominent calcification of the LAD is stable. Ectasia of the ascending aorta measuring 3.4 cm, stable". The line after that reads, "Mediastinium: Unremarkable".

What the heck is borderline heart size? Did it shrink a slightly? Am I becoming the Grinch? Did it get enlarged some? Was I the Grinch before, and now my heart got slightly bigger? I began researching the part about Ectasia of the ascending aorta. I had no idea what that might be. Well, I've got a little bit better idea about what it is, and was devastated to learn how serious this can be. I haven't even gotten into researching the "calcification of the LAD is stable" portion yet, but I know the other part is serious enough to warrant me getting myself to a good cardiologist.

I don't know if this development with my heart is from the chemo, or if there is something else going on. I've never been on any type blood pressure medication, cholesterol medication, since it's never been an issue before.

At this point, I'm a bit preterbed at my Oncologist for not addressing it with me, AND it's made me question something about the scans, and the way results are reported. Clearly, the focal point of the report is regarding my cancer. Does that mean, when each type of specialist requests a CT scan, the resulting report is geared mainly for the specifics that the requesting specialist is wanting, and less detailed about other things found?

Regardless, my Oncologist didn't say a word about the change in my heart, or mention that, even though it indicates the condition is reported as being currently "stable", I might want to consult a Cardiologist moving forward, to keep an eye on it.

Needless to say, I WILL be consulting with a Cardiologist.

Please continue to keep me in your prayers. I truly appreciate it, more than you'll ever know.

Good job at being proactive and usual!

 

[Molpet]

I've always been able to pull up all my medical test results through Moffitt's online portal. A few months ago, I noticed the only test results I could pull up, were my CBC's which are one of the tests on my bloodwork. The blood tests for my liver panels was not being posted, nor were the results of my CT scans. Last Wed. when I saw my Oncologist, I had her print out the results of the CT scan, and give it to me.

We went through the scan results, pertaining to the cancer, but I noticed a line mentioning my heart. I don't remember my heart ever being mentioned in any of the prior reports, so it caught my attention, but the doctor never said anything about it, and I saw the word "stable" mentioned a couple times pertaining to the heart, so I didn't think much about it.

Since then, I've paid more attention. The line reads, "Heart and great vessels: Borderline heart size. Prominent calcification of the LAD is stable. Ectasia of the ascending aorta measuring 3.4 cm, stable". The line after that reads, "Mediastinium: Unremarkable".

What the heck is borderline heart size? Did it shrink a slightly? Am I becoming the Grinch? Did it get enlarged some? Was I the Grinch before, and now my heart got slightly bigger? I began researching the part about Ectasia of the ascending aorta. I had no idea what that might be. Well, I've got a little bit better idea about what it is, and was devastated to learn how serious this can be. I haven't even gotten into researching the "calcification of the LAD is stable" portion yet, but I know the other part is serious enough to warrant me getting myself to a good cardiologist.

I don't know if this development with my heart is from the chemo, or if there is something else going on. I've never been on any type blood pressure medication, cholesterol medication, since it's never been an issue before.

At this point, I'm a bit preterbed at my Oncologist for not addressing it with me, AND it's made me question something about the scans, and the way results are reported. Clearly, the focal point of the report is regarding my cancer. Does that mean, when each type of specialist requests a CT scan, the resulting report is geared mainly for the specifics that the requesting specialist is wanting, and less detailed about other things found?

Regardless, my Oncologist didn't say a word about the change in my heart, or mention that, even though it indicates the condition is reported as being currently "stable", I might want to consult a Cardiologist moving forward, to keep an eye on it.

Needless to say, I WILL be consulting with a Cardiologist.

Please continue to keep me in your prayers. I truly appreciate it, more than you'll ever know.

Glad you are checking this out. One would think they would mention it.
Holding you in my prayers.

 

[N F C]

In today's age, if you don't advocate for yourself, you're foolish. The medical industry is not like it used to be years ago. I'm not saying it's all bad, or that you can't trust anyone, but it's YOUR health, and YOU take the risks, not them, so it's in your best interest to pay attention, and advocate for yourself as needed.

So true!

Sounds like your neighbor will be a terrific source of info.

 

[Alaskan]

So sucks @getaclue

I will keep you in my prayers.

Sure is tough going!

 

[Kayler2699]

I really haven't wanted to post this, but denial can only take you so far.......

Some of my byc family remembers I was diagnosed with leukemia in June 13. I did all the chemo and had a clean bone marrow in Feb 14, indicating remission. Well, that didn't last. My labs started dropping and I had another bone marrow biopsy, it confirmed I'm relapsed. I go back to OHSU in Portland on Tuesday for induction chemo again. This means a 4-6 week stay, 250 miles from home

. It's going to be quite a challenge for my family. My honey's having a hard time not being able to be with me, but he's got to hold down the fort at home. The boys aren't happy, of course, but at least we've had some warning this time. After Induction and some more chemo, they'll be looking for a bone marrow donor since I don't have appropriate siblings. This whole process is going to take a long, long time.

I know God's got my back with this, and it's His plan no matter what happens. It's just hard being so far from my family. And then even when I can come home, I'll be immune compromised and have to live like a germaphobe again--most of you know I'm pretty much the opposite of that!

So, I'd again encourage anyone who is able to donate blood. Not specifically for me, but for everyone like me out there who relies on a transfusion to keep going.

All my friends who are praying folk--your prayers are always accepted! For those who aren't praying people, feel free to start any time

.

This must definitely be hard for you and your family. Praying that this new round of chemo doesn’t have any negative side effects and you are quickly able to get back in remission!