16 replies to this topic

[Susan61]

Hi:  I just had my 6 month check-up, and I am still PCRU which makes it 11 years this year.  I hope everyone who is trying to achieve a PCRU can make it this year, but if not just be Thankful for where you are with your TKI.  When I saw my Oncologist this past week, she said that she has never seen so many people who do not have to undergo a BMT because of what the TKI drugs have done for so many patients.

     I just pray that something even better than a TKI comes along soon.  These TKI drugs do have side effects no matter which one we take.

I am on Gleevec now for 13 years, and I still have issues after all this time. but I Thank God for each day that I have remained at PCRU.

[pammartin]

Congrats Susan!! 

[GerryL]

Hi Susan,

Congratulations on another PCRU.

[Pin]

Fantastic news Susan! I hope you are feeling well otherwise?

[mariebow]

Congrats Susan61

[SUE]

Congratulations, Susan.  That's wonderful news.

Sue

[Ray99]

Susan,

  Congratulation!!  Very happy for you.

[cleocans]

Congratulations Susan!  Such great news!

Kim

[Tedsey]

Long life to you Susan!

Hugs,

Tedsey

[TeddyB]

Great news

Teddy

[scuba]

Susan -  You no longer have CML. It's been gone from your body a long time.

After 13 years using both Interferon followed by Gleevec and the fact that your CML counts dropped quickly in the beginning those so many years ago to below detection without a single uptick is pretty convincing. There is growing evidence that the population of CML stem cells bun out given enough time. You have been taking Gleevec for 13 years.

You should consider lowering your dose in order to lower your side affects if not discontinue Gleevec altogether. But I suspect the "mental" aspect of this disease is too strong. There is a comfort in taking the pill every day for many of us. It's an insurance policy.

I envy your position. I am working to get to PCRU so I can stop taking this toxic drug. I may even stop without achieving PCRU in the test that low level MMR is durable.

Regardless - congratulations on your continued zero. You truly are at zero - not just below detection.

[Susan61]

Hi:  You always make me feel good about my CML, and yet as you mentioned the mental aspect of it I do worry about losing my response.  I had read the one post where someone lost their PCRU response after 10 years.  I just do not trust this cancer.  I make myself crazy with all of this, and yet I would love to cut the dose.  I asked my Oncologist again, and I also asked her about my kidneys because that is the only abnormal on my blood work besides my RBC.  She is blaming my kidney functions on my long term use of BP medication.  The pamphlet with the Gleevec clearly states that it can cause Renal Impairment.  So I am still doing my 400mg a day. Thanks Again for your Positive Attitude toward me being cured.  Hope your doing well.

Susan

[mdszj]

hi Susan - congratulations and good for you.  God bless you, I am sure you have had your share of battles with this.  It is good for the folks that have had cml a long time to post on here.  As a relative newcomer (< 1 yr) I like to read your posts because it shows me that, yes there are long time survivors out there.  Thx Mike

[janne]

Congratulations on your PCR test once again.  I am glad Michael makes you feel good about your CML..it makes me feel good about your CML too ....

[GerryL]

Hi Susan,

Have you tried asking your doctor to get in touch with Dr Druker. Perhaps agreement from Dr Druker that you could lower your dosage to 300mg would be enough to convince her that it was okay.

I definitely felt the difference in side effects between 400mg and 300mg of Gleevec.

[scuba]

Susan - You are cured ... but let's talk about your blood pressure and Kidneys. Blood pressure is serious. Our arteries are not simple pipes. They can expand a factor of three when needed. But when they are "calcified", they can't and so blood pressure goes up in order to try and keep the blood volume flowing that is necessary for our metabolic demands.

So - look at vitamin K2 (yes....Trey, I know ... supplements) - and what it can do to help your arteries and renal function. I take (Trey is going to be all over me on this one) 90mcg of Vitamin K2 a day along with Natto. I also run a few miles, but vitamin K2 will help with your Kidneys. It's good for bones also.

Michael

p.s. Lower your Gleevec dose to the same as Trey.

[Susan61]

Hi Mike:  1 year you said.  Plan on many more years ahead.  I was diagnosed in 1998, and even though I have gone through some rough times with the old treatments back in 1998 which were destroying my liver I still am glad I went on Gleevec.  I believe anything you take has side effects, but I have to keep looking ahead at the fact that its almost 15 years since diagnosis.  They originally were setting me up for a BMT, and I went for other opinions at that time.

I think I made the right choice.  The old doctor who did my clinical trial told me that I would never survive a BMT with all my other health problems.  He said Try the Gleevec, what do you have to lose.  If it does not work, then we have no choice but a BMT.  We do have choices now, that were not available 15 years ago.  I am sure there will be even more in the future now that they know how to treat CML.

I wish you the best with your treatment and some great responses. God Bless You Too.  Prayer is the best medicine of all.

Susan