16 replies to this topic

[Susan61]

Hi:  I got my PCR results, and I am PCRU which makes it 9 years now.  I was very glad to hear that.  Just concerned now with my other numbers regarding my kidneys.  My GFR rate jumps all around from 47 then up to the 50's, and I knew I was dehydrated when I did this last blood test.

I just do not drink water at all. I am always drinking coffee, and that is a automatic dehydration drink.  I was hoping if I could get more fluids in, would my numbers come back up.  They told me years ago that I had CKD.  It seems like no matter what you go through, there is always something else to be concerned about.

    I was wondering if anyone else has this problem.  My kidney functions have always been crazy even before my diagnosis of CML, and years ago you did not get the GFR, that is new the past 5 or 6 years now.  My doctors used to just tell me to drink more water.  Sometimes I would drink tons of water before my test, and my numbers were all normal.  I think I stay away from the water, due to my Overactive Bladder.

  I should just Thank God for today, and what I have accomplished through the years with my CML. 

[Pin]

Wonderful news about your continued PCRU Susan!

My GFR is usually a bit wonky too - I'm 29 and it fluctuates around the 70-80 mark (I always though it should be better for my age). On my tests it says something about it only being an estimate, and that it can be influenced by food/fluid intake. My theory is that mine appears lower because of my low (animal) protein intake (I hope anyway!) as it has been this low at other tests before my CML. Just a theory.

As far as fluid intake is concerned, I think that they are ok with you drinking anything, including tea and coffee and not as worried anymore about the dehydrating effects of things like coffee as long as you are drinking enough fluid in general. Water is best, but any kind of drink will do. Does that make sense?

[scuba]

Ah...my dear Susan. Imagine if you stopped taking Gleevec for three months. And then did another PCR. I would wager that it would come back ZERO. And zero after that and after that and after that.

No doubt in my mind your are CML free. Congratulations on a continued string of success.

The lovely lady is cured.

(p.s. it was that Interferon prior to Gleevec that set the stage.)

[GerryL]

HI Susan,

Congratulation on the PCRU.  A girlfriend of mine who is on the kidney transplant list was told to watch that she didn't drink too much fluid, but she is on dialysis.

[Tedsey]

Long life to you!  Thanks for sharing your good news.  And I hope your kidney issue never becomes serious.  My sister-in-law who is over 60 has decreased kidney function due to excessive NSAID use, (she has had very bad knees and just had them both replaced).  She is still going strong despite.  She takes care of her seven grandchildren, runs two houses, is active, travels, and lives a full and happy life.  I wish the same on you.

Teds

[janne]

Congratulations Susan ! My prayer is that you would continue in your success and feel terrific as well ! Many, many more years to come !  Janne

[Judy2]

Hi Susan

Congratulations on your PCR test, I'm so happy for you. Regarding your kidneys, I have kidney problems due to Wegeners. Last Feb, I was in renal failure and again in June when I had a uric acid stone. My nephrologist told me when I figure the % that my kidneys are working at I should divide the GFR by 80. My last GFR was 28 so 28 divided by 80 = 35 so my kidneys are functioning at 35%. I'm using 80, but I think this depends on your age, I'm 53, as the older you get the less kidney function you have. As we age we all have less kidney function, no ones kidneys function at 100% after a certain age. As I said I use 80 to figure my %, I'm not sure if size, muscle mass, also figures into the equation. Anyway we really can get by with less kidney funcion  then you might think. If we figure your GFR out of 80 then at 50 your kidney function would be 62.5% which is not bad at all. Do you know what your creatinine is? As a side note, last Feb. I was headed to the emergency room because I was in renal failure, on the way to the emergency room, I think my kidneys were functioning at around 10% at the time, I stopped at Dunkin Donuts for honey dipped munchkins. Renal failure or no renal failure a girls gotta eat!!!

Anyway, this is how I understand the kidney fuction tests. I could be wrong as TKIs plus stress = brain fog. If you have any questions you should see a nephrologist but I really think you are doing fine. Also, a GFR of > 60 is considered in the  normal range, so a GFR of 50 is better than you might think.

Judy

[Marnie]

Yea!!! Congratulations!!!

[grannyd]

So happy for you Susan!!! congratulations!!! You are such an inspiration to me. I just had my one year PCR test & happy to say I am still CMR--when my Dr. called this morning she was so happy to tell me the good news of UNDETECTABLE!!!! I hope I can continue on as you have and may you have many, many more years of PCRU!!! Prayers to you & everyone granny d

[pammartin]

How wonderful Susan, congratulation!

[Susan61]

HI Judy:  Thank You for the detailed information about kidneys.  I was seeing a Nephrologist after I had a abnormal bun and Creatnine test a few years ago.  I would go see him, and he would just say Oh your doing okay with your levels, and then I would have to pay the $30.00 co-pay for nothing.  I finally stopped seeing him, and I watch my numbers ever since.  Actually my BUN/Creatnine has been normal for a long time, and its only the GFR that goes back and forth between 47 and 53.  I even went back into my old records to see how my numbers were, and they seem to be running the same for years.

     I think I have to just stop worrying about it, and I really should be drinking more water than I do.

Susan

[Susan61]

HI:  I knew you would say something like you did.  I did talk to my doctor, and she said that if I can handle the Gleevec, to just stay on it.  She did not want to cut my dose or stop it.  I have to say I agreed with her.  She wanted to watch how I do for the next 5 years.  She was telling me how some of her patients had extreme side effects from Gleevec, and that she uses my case a lot as an example to new patients etc.

     You probably think I am nuts.  I just feel that I have come a long way, and the fact that when I was on the Interferon and Ara-C which failed I had no other choices available to me until Gleevec.  I really thought I was done.  Not having a bone marrow match to top it all off.

    I am very happy for everyone, especially a lot of our young people that there is so much available to them than what I had.

   How are you doing?  I had not been on for awhile, and asked about you not knowing you changed from Michael to Scuba.  What are you taking now?  How are your lab tests doing?  You are a real fighter for the cure, and I hope your plan proves it all to be true with Curcumin and other natural choices.

Susan

[Judy2]

Hi Susan,

I hope you do stop worrying about it, you are doing great in all ways. I hope you can relax and enjoy your great results!!!

Judy

[Susan61]

Hi:  If your around the 70 or 80 mark you are doing real good.  They are happy to see 60 on your GFR.  Hope your doing good.  I have a hard time keeping up with everyones progress.  We have gotten so many new people on here, and everyone is on a different treatment with different responses.

    As for the water, my husband is constantly telling me that he never sees me with a glass of any kind of liquid.

I am also Diabetic, and never thirsty.  Usually when you are diabetic you feel thirsty.  My husband is diabetic, and he says he always has dry mouth and feels thirsty.  He drinks these big glasses of Ice Tea in between his coffee constantly.

Thank You and Everyone Else who has sent me their well wishes and Congratulations.  I just like to inspire others that these TKI drugs do their job, and give you a good response even if it takes awhile.

Susan

[Pin]

Bless you Susan, you are so kind! I am currently doing ok on Gleevec, sitting at about -2.43 log reduction from baseline at 6 months, which I am happy with.

All the best

[scuba]

Hi Susan - This new format confuses login name with real name. I use Scuba to log in - my name is Michael.

My wife and I Scuba dive as often as we can. There was a short time when my Neutrophils were so low that I was advised to stay out of warm salt water. I waited until my Neutrophils were back above 0.5 and then in the water I went.

I survived.

[hannibellemo]

Fantastc, Susan! Couldn't happen to a nicer or more deserving person. Here's to many more.

Pat