43 replies to this topic

[Susan61]

Hi:  I saw my Oncologist today, and I am still PCRU.  I have hit the 9 year mark of PCRU, and so pleased.  My platelets are holding.  They were 96 back in April, and now 97.  She was not concerned with anything, but I did not get to see my blood work copy until I left the building.  She sat and went over everything off of her copy.  When I got to really look everything over I could see everything is still holding as usual, but my Urea Nitrogen was slightly elevated.  I know that is not the same thing as Uric Acid, but I do not want to see any numbers out of range.  Normal is 7-25, and I was 28.  Never had this before.  Odd also because I think I was starting with the Gout with pain for a few weeks in my big toe.  No swelling or inflammation, and then it stopped hurting just this week.  Naturally I started to look things up, and there are so many reasons why these kidney numbers can go up which included Dehydration and Diabetes.  I am Diabetic.  I think I should just keep an eye on my next set of results which is in Oct. and relax for now.

    I guess I am like a lot of other people with the way we look at our results.  She also does not want to lower my dose of Gleevec yet.  So we are leaving things the way they are for now.  I appreciate any feedback.

Susan

[Susan61]

Forgot to mention the one thing I was so concerned over was my filtration rate GFR, and it came up to 51 from 43.

I was so relieved not to see another drop.

[GerryL]

Hi Susan,

No info on the kidney side of things - but did she give a reason why she didn't want to lower your dosage. After some reluctance from my doctor, my dosage has been dropped to 300mg, my next test isn't until October, so will find out then how I am going.

[Antilogical]

Congrats on your continued PCRU status!!!!!

[scuba]

From Susan, "I appreciate any feedback".

You know, Susan - I've got to weigh in here. You know what I am going to say.

You are 9 years ... let me repeat ... 9 years PCRU. You started with Interferon and then proceeded to Gleevec.

Lots of evidence that patients on Interferon FIRST followed by Gleevec have had remarkable outcomes. And 40% of those who stopped taking Gleevec have had no recurrence after just a few years of PCRU and you have NINE. And this is especially true of the Interferon folks - which be you.

http://www.healio.co...inuation-in-CML

YOU ARE CURED, BABY. There ain't a single CML stem cell left in your body. It is gone. dead - long dead. You made sure of that by first having the Interferon. Even those who are not PCRU had continued decreases in CML once stopping. And they stopped after two years. You have NINE years.

I know...I know....

Maybe - you might consider cutting your dose from 400 down to 200 and see how that goes. I mean our buddy, Trey - he reduced his dose from 400 to 200 and he is still PCRu and he was PCRU only half the time of you. I will wager Euro's that you will be PCRU again 3 months from now even if you drop dose to 200. I know you won't go to zero just to see (and your platelets will recover) if you stay PCRU. I understand - but I can't wait for the chance to try.

Anyone else want to join in on the wager?

[mariebow]

That is so Great!

[janne]

Susan,

Congratulations once again on your PCRU status !! I vote with Michael. He presents a very persuasive argument. If you are not ready to stop completely, reducing your dose to 200 mg would certainly be a viable option. I realize your doctor's comments weigh heavily on this issue. Your overall compliance over the years and your 9 years of PCRU victory certainly should be considered. I would hope to see you feeling better in general and cutting your dose could certainly help you along towards that goal. But all in all, I still vote with Michael for doing a trial off the drug.

In regard to your BUN result, it is very possibly related to the hotter weather of summer and not being hydrated enough. I have seen mine vary several points in relation to hydration.( I have to think about it the day before and the day of blood draw and concentrate on fluid intake  just to prove to myself that adequate hydration makes a difference..)

Whatever your decision, I am certainly happy for you for your continued PCRU status and hope that your doctor eventually comes around to seeing things from Michael's point of view...ha !

[Susan61]

HI Janne:  I value everyone's opinion, especially the younger people who are determined to get off these TKI drugs. They do not want to be on them forever, and I just do not want to do anything that could jeopardize what I have accomplished in 9 years.  I have decided to see how everything looks in Oct. at my 3 month blood test, but I get my next PCR test in Jan. My doctor told me today that she had a man who was PCRU, and doing well. He did not like the puffy eyes because he felt his looks were important in his line of work.  She let him cut back on his dose, and he lost his reponse.  I think she is afraid to let me try it.  Everybody's body and metabolism is different. I guess its everyone's decision for themselves.

    I have been very upset with the Kidney functions for awhile now, and actually after I got that high BUN I did read some material.  It said exactly what you just said about dehydration.  Almost everyone is suffering with this hot summer, it has been brutal all over.  I was glad to see my GFR come back up a little bit.  I was diagnosed a few years ago with CKD, so its a big issue with me.  So your saying that hydration has helped you.

   I have a lot of other problems also, and I am going to take this all one day at a time.  I do not think it will matter if I wait this out for a few months.  I will be living with CML 14 years this Dec.

   I do Thank Everyone for their Caring and Well Wishes, and I hope seeing my response to my TKI will help someone else.

Susan

[Susan61]

Hi:  I knew I would hear from you before anyone else.  You can read what I just wrote back to Janne. I have to decide what I want to do.  I was 52 years old when I was diagnosed with CML, and I see so many younger people like you who are getting CML at a early age.  I can certainly understand all of you looking for a better answer than to take a TKI forever. CML used to be for people 50 and over if you read old reports.

    Thanks for all your positive support you always give me.  I will be 65 in Nov. and I have so many other health issues to deal with also.  I have a lot on my mind all the time, but if I could do something more with this CML I think it would help me.  I just need some more time to really make up my mind, and be more aggressive with my doctor.

Thanks So Much Michael

[Susan61]

Hi Gerry:  I am trying to answer everyone who has given me such great support here.  Read some of my other responses so I do not repeat myself.  I am doing anothe test in Oct. and I think I am waiting to see what that shows.

I need some time to get my head on straight with all of this.  I guess its a case of "IF IT AIN'T BROKE DON'T FIX IT"

     I am just so glad that I have all of you to talk to who know where I am coming from.

Susan

[GerryL]

Hi Susan,

I can understand your hesitation with a dosage lowering, you've had a harder road than a lot of us newbies. 

I read a thread from someone on Jerry's board, who has had CML for 21 years and is now only achieving MMR on Ponatinib - so it appears length of time is not a marker re who can stop/reduce their Gleevec. My doc doesn't believe Interferon is the answer either. In the recent info they appear to think that you need a rapid response, two years of PCRU and a low sokal score to be able to look at trialling coming off Gleevec. My doc doesn't like 200mg of Gleevec (and Dr Druker doesn't seem to either), I'm assuming they consider it too low a dosage to combat CML - though it does appear to work for Trey.

[scuba]

HI Susan -

You wrote, "My doctor told me today that she had a man who was PCRU, and doing well. He did not like the puffy eyes because he felt his looks were important in his line of work.  She let him cut back on his dose, and he lost his reponse".

Questions I would ask your doctor:

1. How log was he PCRU? (was it NINE years?)

2. Did he take Interferon prior to starting TKI therapy? (Evidence suggests strongly that those who had Interferon first have a much higher chance at cure).

3. When he restarted his therapy after losing response, did he re-achieve PCRU?

Question 3 is the real key in my opinion. Everything I have read suggests that when a patient stops TKI therapy after having achieved PCRU and then loses response, they regain it quickly as soon as the next test. I don't recall reading anywhere, a single example, where a patient who had been PCRU, loses response by stopping and then progresses even with renewed TKI - not a single case. So that gives me HIGH confidence that even if a PCRU person stops therapy and loses PCRU, they will regain it again by resuming therapy. And the good news is that 4 in 10, maintain response. That is why so many people with Dr.s blessing are trying the 'stop TKI' path to test the idea. The risk is low.

In your case, I understand how you feel (the risk is not zero after all, just low) - but I write these comments because of the other health issues you cited. TKI's are nasty drugs. Your body is working hard to get rid of it all of the time. Your liver, Kidneys and other organs are affected. And you have low platelets, which in later life is especially important to have handy.

So in your discussions with your doctor, ask the 3 questions above and inquire about what health "benefit" should you expect if you did indeed lower your dose or even stop. Energy level?, muscle cramps?, organ function? etc. Better quality of life?

I said you are "cured" and I really believe that. But peace of mind is important - and you should only do what you feel comfortable doing. I just wanted to add that there are folks here that are with you if you decide to go down the less is better route. Trey went the less is better route and so far has had a great result.

Regardless your choice - you are my hero for blazing the trail and proving that a long life awaits us despite this disease.

p.s.

Drink a lot more filtered tap water - that should help with the Uric acid levels. And take vitamin C (1,000mg).

Michael

[Trey]

The blood urea nitrogen (BUN) levels along with other kidney indicators as you have previously reported show that your kidneys are not functioning at peak performance.  But the levels are not awful, either.  Personally, I would view this as a good reason to lower dosage, even more so than the long term PCRU.  You should protect your kidneys in any way you can, and lowering Gleevec dosage may be one of the easiest ways to take some strain off them, since some of your other health issues are harder to control.  You could ease into it by reducing first to 300mg, which is still a fairly therapeutic dose even for many with measurable CML.  Also, if you are not currently splitting dosage, that would also spread out the effects on the kidneys. 

Michael:  Interferon prior to TKI drugs has not been shown to increase the probability of anything.  All data was statistically insignificant.  There is some evidence that Interferon plus TKI drugs simultaneously may have some advantages, but there is no "cure" evidence.  Some studies are just starting on the use of simultaneous drugs.  But maybe Interferon could cure hyperbole?  Probably not.  Appears to be resistant.

[ChrisC]

Congratulations Susan: whatever you decide to do or not do, now or the future, you have an excellent track record of maintaining PCRU, and that is monumental! Well done, enjoy it.

All that I can suggest is that if/when you are ready to make this decision about your CML treatment, I would hope that one of the steps you would take would be to get a second opinion from a CML expert. That carries a lot of weight, mentally, which fortifies you in your thinking about your treatment. Worrying about "this road" or "not that road" can be an extra weight to be carrying around, and you want to be always moving lightly. And if you decide to not change your dosage at this time, might it be better to then leave a year or two of being free of thinking about it? A lot changes in a year or two!

My hema/onc said that he couldn't take the responsibility for allowing me to stop Sprycel and that I would have to see the specialist, which I gleefully did. And we know how that worked out: still PCRU ten months post-Sprycel, so that's no change from 0.000 since Sept. 2009.

It is your life, you can do anything that you are willing to take responsibility for, so getting expert advice is very important! Staying on Gleevec, stopping Gleevec, lowering the dosage: you decide. The trials have been very clear about what happens when folks stop after at least two years PCRU (these were folks who also were quick responders to their TKI, quickly achieved PCRU, and maintained it unwaveringly: these are key to the studies; much is still to be learned from folks with a slightly different history, but the findings so far are encouraging).

I'm personally not in the camp voting for lowering the dosage, as my feeling is that I am wanting to allow my body to "remember" how to handle itself, and having faith in its ability to locate and eliminate any non-healthy situations that may come along is a big part of that. The studies show that if there is not an increase in BCR-ABL, or just a slight increase that is stable, then there is no need to restart the TKI. It is only if the increase is sharp, or the trend of increase is ongoing over a few months, that restarting the TKI is advised. This way the body is allowed to find its feet again, so to speak. Plus, reaching six months post-TKI without needing to restart treatment is achieved by 40+% of the folks in the studies, and as far as I've heard (Jan. 2012 by Dr. Shah in SF), only one person who was still PCRU (or close) who went past the six-month mark w/o their TKI has needed to restart their treatment! If there is ever a need to restart TKI therapy, then everyone in the studies, as Michael points out, has regained PCRU quickly. That is good to know.

Wishing you good health in the coming months, and remember that we are all your biggest fans and support whatever you do!

ChrisC

[scuba]

Susan:

You wrote, 'if it ain't broke, don't fix it'. Your Renal issues (Uric acid) suggest that something is getting broken. The article below highlights Gleevec's potential impact on Renal failure:

http://ckj.oxfordjou...ent/2/1/27.full

Talk to your doctor about this. As Trey pointed out, lowering your dose may help alleviate the problem. And I stand by what I said about Interferon prior to Gleevec. There is an outstanding chance you will remain PCRU.

Trey:

http://www.ncbi.nlm....pubmed/20142590

There is no cure for CML - except the possibility of outlasting the disease to get a functional cure. After nine years PCRu - and especially after having Interferon PRIOR to the start of Gleevec, Susan has a very high likelihood (as high as 75% chance) of having eradicated the disease.

There is even a great chance that you have outlasted the disease (5 years PCRU). I appreciate not wanting to find out (in both your cases). But I am very encouraged that a functional cure is possible.

[Judy2]

Hi Susan,

I'm in a rush but I will email you later privately.  I wanted to let you know you are FINE.  DO NOT WORRY.  As you know I see a top nephrologist

due to my Wegener's.  My last GFR was 26 and my last BUN was 54.   If I'm reading the responses to your questions correctly it seems as though people are telling you to lower your Gleevec because of your kidney function.  I'm a little concerned about this advice. I know a little bit about kidney function, let me reiterate you are doing fine.  Will email you sometime tonight. 

Hugs, Judy

[Marnie]

Susan. . .congratulations!!  I don't have anything to add to the conversation except a "congratulations."  You have been an inspiration and I hope to be in your position some day.  After my first PCRU, my numbers went back up, so I am not there yet.  But your story is very helpful to all of us on the board.  Good luck figuring out what to do with the numbers that are making you uncomfortable.  Don't let the stress get to you.

Marnie

[Susan61]

Hi Trey:

    I have everything floating around in my head, but the fact that you mentioned splitting my dose could be a first thing for me to try before my Oct. blood work.  I just got my Gleevec delivery before I had my doctors appointment, and its a 90 day supply.  I am going to start splitting my dose and take 200 in the morning and 200 at night.  I might even see a difference in some of the side effects.

   Everyone is being so supportive and trying to give me some advice to feel better and do better, and I do appreciate it all.  I am going to start that change tomorrow, and then go from there.

Susan

[Susan61]

Thanks Marnie:  I was thinking along those lines, because I do get stressed out very easily.  As a matter of fact I had a very stressful day with nothing to do with my CML.  Just one of those days where nothing went right, if you know what I mean.  Thank You for your support, and I hope you do better with your treatment.  Just keep in mind that a lot of people do not even get to PCRU, and still thrive very well.  I tell people that all the time, because I know some who are still trying to get to that point. 

      I know how you enjoy life no matter what is going on around you.  Enjoy the rest of your summer months.

Susan

[janne]

Susan,

I completely respect your decision making  process and your reasoning for what you do and would absolutely not want you to feel compelled or pressured towards anything that is just not in your comfort range. I do not believe anyone would want you to feel that way. You have certainly been a forerunner in this battle and I highly respect what you have attained, particularly since your diagnosis was prior to TKI therapy.You have an absolute right to hold onto what you currently have; you worked very hard to get there !!!  I want you to feel better in whatever you do and please know that you are a blessing to all of us. When we make decisions of this nature, whatever it is in  life, we have to be convinced from deep in our own hearts to do just that, and I mean that in the most sincere way. I am not yet at PCRU so I do not yet have that sense of having attained the ultimate goal. I too gain much insight from those on these boards. Peace to you.