Hi Jeanie!

Was wondering if you are on a statin drug for high cholesterol. Every statin 
drug causes achy joints in varying degrees for people. This is the biggest side 
effect of statin drugs. I refuse to go on them.  Was on lipitor for awhile 
until I did some research. But of course everyone can do their own thing.

I also take turmeric (a simple spice) with pepper combined to keep my 
inflammation in general down. It is very effective. Without something in pepper 
that helps the turmeric digest, you are wasting your turmeric. It does not 
absorb into your body without it. Everyone fights inflammation for one reason 
or another. Just a tip.

Also fighting essential tremors and other things, besides the cml. Beginning 
another new drug today to help tremors. In reference to Marty saying we can all 
feed ourselves, pee, etc. Funny, but I am trying to learn to eat with my other 
hand because I shake too bad with the usual hand. Soooo thankful I am somewhat 
ambidextrous! But typing has become a problem. Did I mention I am so thankful I 
can pee, sleep, chew food, walk, talk and especially laugh?  My husband makes 
sure of that.

Have wonderful holidays and enjoy every day!!!
Thanks Marty for making us all laugh!!!
18's,
Love and prayers,
Susan Z.






Susan F. Zimmerman
"All who humble themselves before the Lord shall be given every blessing, and 
shall have wonderful peace." Ps.37:11

On Friday, December 22, 2017 'Jeanie' via CMLHope <cmlhope@googlegroups.com> 
wrote:

Hi all,

Have you considered Moffitt cancer center. I go there and like it. You go to 
the blood center and get your blood checked and then in about an hour they are 
faxed over to doctor and you see him. I go every three months. 

I was wonder if any of you have your bones aching?  My right little finger and 
hand ache and legs hurt sometimes at night. I've been fighting cml for almost 
14 years and never had this. Blood counts are all good. Thanks all.  

My Motto:

Faith and Pills

With Love

🐠18's

Dx 1/2004 CML Leukemia

Started Gleevec 2/2004

Started Tasigna 9/2009

Started Sprycel 11/2009

Started Ponatinib 1/2015

Doctor Balducci Moffitt Cancer Center 


On Dec 21, 2017, at 6:56 PM, Marty Gartenberg <wa2...@gmail.com> wrote:

Listen Greenie,


This is what i do because of a promise that i once made to GOD. Let me tell you 
about this.

When i was about to receive my total body radiation almost 30 years ago,


 just before they were about to close and lock that radiation chamber door i 
got down on my knees clasped my hands in front of me and prayed to GOD asking 
HIM if he would spare me i would help people that were in my situation that i 
would try to help them. So far i have helped 1,286 people in the past 30 years, 
and wrote my journal about each and every one of them. This will never be 
published because of confidentiality reasons, but on occasion i will send some 
of them parts of my book in order to try and help them.


Listen i am no saint just a plain human being but someone that once made a 
promise to GOD and i am still here after many many death defying things that i 
have gone trough. And that is why i do what i promised to do. I hope that you 
understand why i do what i do...


There is also why i write 18's when ever i end any posts that i make, because 
that is what i believe. 18's to me represents LIFE.


If you care to send me your personal email address i would like to send you 
something. Mine is wa2yyx@gmail,com


18's,


Marty 


On Thu, Dec 21, 2017 at 4:28 PM, Myvety2k via CMLHope 
<cmlhope@googlegroups.com> wrote:

Marty, I want to thank you for your fast reply, I hear you.  I do have a 
Nephrologist and he had me get some blood work last month and he seems to be 
O.K. with the results.  I do have the paper work and will scan it and send it 
out so you can check it out.  I want to thank you so much, you have made me 
feel so much better and I will listen to what you wrote me.  Again I want to 
thank you.

 

Greenie

 

In a message dated 12/21/2017 11:31:29 A.M. Eastern Standard Time, 
wa2...@gmail.com writes:

Hi Greenie, 


First of all, you mention that you are worried. Why may i ask are you so 
worried? When people worry about things that they have little or no control 
over then it not only effects your mind but also your body. I know all about 
this because that is exactly what i used to do and i learned to direct my mind 
in more productive ways. Now just try to relax and get yourself going in the 
right direction. 


Now you mention about CRI so read this..


CRI (color rendering index) is a measure of how accurately a light source 
illuminates objects' true colors. Our LED lights have CRI values of up to 98, 
indicating that our LED lights are able to produce white light that 
approximates halogen or incandescent lighting and natural daylight.


It however has some effect on your kidneys because if they are having problems 
than it is a very simple thing to just go to a Nephrologist and see what is 
happening and why.


As you mentioned the normal Hemoglobin count for women should be from around 13 
to 17 however not necessarily for men because men don't have their time of the 
month as woman do, so men require a bit less of Hemoglobin.  


Now a count of 10.7 shows that you are enemic and that can from a verity of 
different things. One being the effects from your TKI being Gleevic which i 
think may be the cause, now mind you I am not a doctor but someone that does a 
lot of research into things that i have already been through.


Another thing would be kidney problems which i kind of doubt because your 
doctors haven't mentioned it. Do you know what your 


Levels of creatinine in the blood reflect both the amount of muscle a person 
has and their amount of kidney function. Most men with normal kidney function 
have approximately 0.6 to 1.2 milligrams/deciliters (mg/dL) of creatinine. Most 
women with normal kidney function have between 0.5 to 1.1 mg/dL of creatinine..


My Creatinine level was 8.2 before i started on my dialysis and i had to go 
onto dialysis which lasted for four years. Then i was able to get a kidney 
transplant from a 20 year old deceased  man who was anonymous, and about two 
weeks later it dropped down to 4.1 and kept dropping to where it is now at .8 
and it now stays there. Remember, i have only one kidney while  most other 
people have two kidneys so i know that having only one kidney is doing very 
well for me, and no more dialysis for me anymore.


What you did mention is that your counts are now at   "My white count is find 
at 5.8).  Iron was 88 (50-212), Iron binding capacity was 281 (250 - 450)". 
Which are quite acceptable and very good for you.


And speaking about your kidneys let me give you some information. When my 
kidneys started to fail i noticed that my Hemoglobin also was dropping 
especially after i began to receive dialysis. They were at 14 then would 
gradually drop to being 9.9 and that was the magic bullet that triggered that i 
would be able to start receiving Procrit or Epogin injections which brought my 
Hemoglobin to usually 11 and it would take about a week. Then a few weeks later 
another shot and so on. The reason why is that your kidneys produce a *hormone 
that is sent to your bone marrow that stimulates Red Blood cells into your bone 
marrow.

*Erythropoietin (EPO) is a hormone produced by the kidney that promotes the 
formation of red blood cells by the bone marrow. The kidney cells that make 
erythropoietin are sensitive to low oxygen levels in the blood that travels 
through the kidney.


This is what happened to me so i know what i am talking about. Ever since i 
received my kidney transplant about two and a half years ago my Hemoglobin has 
gotten to be around 14


Now i am not saying that you have any problems with your kidneys but i am 
puzzled why did your doctor mention about CRI?  As I mentioned why not go to 
see a Nephrologist . Couldn't hurt. 


Another suggestion that you have already mentioned, and because you have a 
smart doctor looking after you why spend over $600 to fly to Chicago when you 
have loads of very fine doctors in Florida especially in your area?


Now I have given you a lot of useful information and hopefully it will help you 
and do you know why? It's because i was there and had to go through all of this 
and i learned what i had to do, and besides your worth it! Yes you are. Just as 
was my friend Lottie. She did a lot of research as well in her time which i 
never forgot... In fact so did Zavie,


Now finally, since AOL is going out then you already did the right thing by 
switching over to another (FREE, I love that four letter F letter word)  
internet provider. You also may want to get another F word like gmail just in 
case as a backup. 


Please, please Greenie try to stop worrying, just take it one day at a time. 
You know it will all work out.


18's,


Marty  


On Thu, Dec 21, 2017 at 7:10 AM, Myvety2k via CMLHope 
<cmlhope@googlegroups.com> wrote:

To all of my CML friends and care givers.

 

I took a flight to Chicago Dec. 6th to see my cancer Doctor get blood work.  A 
week later she called me to tell me that my Hemoglobin was down to 10.7 and the 
norm is 13.0 - 17.5.  My Hematocrit was 32.1% and the norm is 38.0 - 50 %.

She wants me to get a Bone Marrow test here in Florida because the airfare to 
Chicago would be $601.00. That's not going to happen.  I'm also taking Folic 
acid for the last 6 months (1mg). Folate is 16.7 >=5.9.

 

She sent my other cancer Doctor down here a fax as to what she wants. I have 
and appointment set for Jan. 2 and talk to him about what to do. (I'm worried). 
She made a note to him that I also have CRI which may be Contributory.

 

So back in 2010 my counts on these two item were Hemoglobin 13.3 and Hematocrit 
was 39.0. 

 

So back in 2015 my counts on these two items were Hemoglobin 12.0 and 
Hematocrit was 36.1. So the counts are coming down and I think it's from the 
Gleevec.

 

My white count is find at 5.8).  Iron was 88 (50-212), Iron binding capacity 
was 281 (250 - 450).

 

So anyone that may have some answers that may make me feel better just hop 
right it and I will very happy to hear from you.

 

ALSO, I don't know now to do it but AOL is no longer going to be as of Jan 15. 
My new email address is  (myvet...@comcast.net) and it's free for me and much 
better.

 

Any feedback would be deeply appreciated.  

 

Thank you all and have a Very Happy and Safe Holiday.

 

Greenie for South Fort Myers, FL.

 

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