56 replies to this topic

[Trey]

Psyllum husk....Also found seeds...

Right. Plant psyllium seeds in your anus and see what that does for you.  At least they would be well fertilized. 

 

I'd stick with the alcohol.  Sounds like you need it. 

 

Norwegians are supposed to be the happiest people on earth.  Where's the "happy dappy" stuff?

http://www.reuters.c...a-idUSKBN16R27B

 

Your friends at Lake Wobegon salute you.

Edited by Trey, 09 June 2017 - 08:30 PM.

[gerry]

Just ignore Trey this once Teddy.
Psyllium husk is branded as Metamucil. Should be available in your supermarket. The one I buy isn't in a tablet form. I took it while on Gleevec and still take it today as I figure I probably eat too much processed food and not enough fibre. I am trying to avoid bowel cancer down the track.
Don't take when you are taking your TKI as it can prevent absorption of the drug.
I took psyllium husk and the probiotic and only occasionally had shart issues. :-)

[TeddyB]

Right. Plant psyllium seeds in your anus and see what that does for you.  At least they would be well fertilized. 

 

I'd stick with the alcohol.  Sounds like you need it. 

 

Norwegians are supposed to be the happiest people on earth.  Where's the "happy dappy" stuff?

http://www.reuters.c...a-idUSKBN16R27B

 

Your friends at Lake Wobegon salute you.

 

 

There is enough going on around my anus at the moment and planting a psyllium seed sounds like much work.....

Yes i definitely need the wine!!!! But 1 month without should do me good

We are the happiest people on earth only when we drink Akvavit! But seriously when my tummy is functioning as it should, life is good

 

Trey, since you are here, do you see any benefits in splitting of dose and taking it morning/lunch instead of taking it morning/dinner? Or should it be just the same either way?

 

 

Just ignore Trey this once Teddy.
Psyllium husk is branded as Metamucil. Should be available in your supermarket. The one I buy isn't in a tablet form. I took it while on Gleevec and still take it today as I figure I probably eat too much processed food and not enough fibre. I am trying to avoid bowel cancer down the track.
Don't take when you are taking your TKI as it can prevent absorption of the drug.
I took psyllium husk and the probiotic and only occasionally had shart issues. :-)

 

Fiber is always good, i am trying probiotics and some dietary changes (with more fiber), if it does not help i will try Psyllium.

[TeddyB]

I began having stomach issues that cause be to lose 10 pounds and loose bowels after almost three years on Sprycel 100 MGM. Onc didn't think it was the medicine since this was a new side effect for me.
I was also had a very small questionable PE.
We reduced my Sprycel to 79 MGM and all these issues are much better. So I believe it was the dose I was on and now reduction has shown improvements.

 

Thats why i wanted to reduce dose myself. I am sure Gleevec is causing it or at least plays a big role. But hopefully splitting dose morning/evening should help.

[Trey]

Trey, since you are here, do you see any benefits in splitting of dose and taking it morning/lunch instead of taking it morning/dinner? Or should it be just the same either way?

 

I doubt there would be much difference.  But you can always try.  And you don't need to do what your Onc says if you choose.  You are the one who puts the pills into your mouth (and the psyllium aborally).

 

Hope your agricultural experiment works out.  I am working on a derivative version of the plant and will call it Silly-M.

[Kali]

Hi Teddy,

That is why I shared what I did because of what you are dealing with. I think it is interesting that I had no side effects on Sprycel for a very long time. Now in the past few months I have had some.

It makes me wonder that since I have near pcru numbers for the past year or so, if this highly potent drug doesn't have as much to target with less bcrabl1 cells in my body so it is targeting other areas of the body more ferociously.

Just a question in my mind that I have pondered.
Anyway, I know reduction of dose helped. I wish you the best😊

[scuba]

I should add he has concerns about the cancer overtaking the drug if dose is too low.

I will share the article where Dr. Cortes starts newly diagnosed patients with 50 MGM.

 

His concern that the cancer can overtake the drug if dose is reduced too low is valid. This is why when dose is reduced,  you should have your PCR checked at 4-6 week intervals to verify impact. When I was reduced to 20mg, I tested once a month for several months until a new trend was established. 

[TeddyB]

I doubt there would be much difference.  But you can always try.  And you don't need to do what your Onc says if you choose.  You are the one who puts the pills into your mouth (and the psyllium aborally).

 

Hope your agricultural experiment works out.  I am working on a derivative version of the plant and will call it Silly-M.

 

Hehe, thanks for your input.

I am trying breakfast/dinner, now 3 or 4 days in (hard to remember without my red wine), and it seems to work pretty good.

Only drawback of my new "diet" is: Its Saturday night, and no wine, the wife is having a nice glass of Rosé, and i am drinking carbonated water........oh well.

If my pcr results come back negative (will know in a few weeks) i might go for 300mg pr day, but im not sure that 6 months pcr testing intervals is a good idea while trying reduction.

For a drug switch i will have to get my onc on board first. She has one patient trying cessation because of really bad side effects, so far so good for that guy. I find it strange that she is on board with cessation but not reduction.

 

Hi Teddy,

That is why I shared what I did because of what you are dealing with. I think it is interesting that I had no side effects on Sprycel for a very long time. Now in the past few months I have had some.

It makes me wonder that since I have near pcru numbers for the past year or so, if this highly potent drug doesn't have as much to target with less bcrabl1 cells in my body so it is targeting other areas of the body more ferociously.

Just a question in my mind that I have pondered.
Anyway, I know reduction of dose helped. I wish you the best

 

Thank you for sharing, i hope your side effects get better, are you considering further dose reduction?

Yes one day, i will hopefully get on a lower dose, or even a drug switch, but for now i will have to continue playing "the waiting game".

[campanula]

Thanks for starting this thread, Teddy - and for posting your results.  This thread and another about the fickleness of PCR testing has helped me deal with my PCR results this past week - an "jump" from <.01% to .03%, my first increase .  Unfortunately, this means no dose reduction for me in the near future.     Next PCR test will be in September.

[Kali]

Teddy, you asked if I plan to reduce my dosage further. Yes, that is my hope and I plan to start that conversation with my onc. I just finished my first 30 days of 70 MGM and if my numbers stay near PCRU on that amount, then I would like to go for further reduction to avoid serious side effects as much as possible.

[gerry]

Teddy - there has been more trials and published results for cessation. So perhaps that is why your doc is more comfortable with the idea. My previous doc was originally a full dose man, but he came round to the idea of dosage reduction. But I only started it after a year of PCRU.

[crob20]

I'm joining the dosage reduction conversation.
I have been lobbying for dosage reduction and did go to 300mg Gleevec last spring when side effects were just too much for me. Finally my Oncologist let me cut to 200 mg last month. Fingers crossed.

I kept giving the treatment team links to studies. Last visit I emphasized that Providers underestimate the impact of these side effects on our quality of life. This was part of the ASH conference last December.

I have some success with Metamucil wafers to manage the diarrhea and cramping.

[Kali]

crob20,

Do you know how I can find the talk at Ash about side effects hat you referenced on here? Thanks!

[gerry]

http://www.ascopost....eloid-leukemia/

Reducing Doses and Stopping Tyrosine Kinase Inhibitors Gain Favor in Chronic Myeloid Leukemia

[Kali]

Thanks, Gerry!

[TeddyB]

Thanks for starting this thread, Teddy - and for posting your results.  This thread and another about the fickleness of PCR testing has helped me deal with my PCR results this past week - an "jump" from <.01% to .03%, my first increase .  Unfortunately, this means no dose reduction for me in the near future.     Next PCR test will be in September.

 

I have had a few increases myself, but they always went back down, your next test will hopefully show pcr down again

 

Teddy, you asked if I plan to reduce my dosage further. Yes, that is my hope and I plan to start that conversation with my onc. I just finished my first 30 days of 70 MGM and if my numbers stay near PCRU on that amount, then I would like to go for further reduction to avoid serious side effects as much as possible.

 

Keep us updated

 

Teddy - there has been more trials and published results for cessation. So perhaps that is why your doc is more comfortable with the idea. My previous doc was originally a full dose man, but he came round to the idea of dosage reduction. But I only started it after a year of PCRU.

 

I will have to compile a list of trials for my next onc vist

 

I'm joining the dosage reduction conversation.
I have been lobbying for dosage reduction and did go to 300mg Gleevec last spring when side effects were just too much for me. Finally my Oncologist let me cut to 200 mg last month. Fingers crossed.

I kept giving the treatment team links to studies. Last visit I emphasized that Providers underestimate the impact of these side effects on our quality of life. This was part of the ASH conference last December.

I have some success with Metamucil wafers to manage the diarrhea and cramping.

 

Great to hear you got your dose reduced, i think i will have to bring printed out copy of some of the latest developments, maybe she will read them

 

 

I have been scanning through the internet today and found out carbonated water (which i drink maybe 0,5 - 1 liter daily) can impact gallbladder and bile production (can this be a reason for me not being able to handle fatty foods lately?), and Sorbitol (which is in my trusty pocket companion "Fishermans Friend", which i also eat 5-10 daily) can definitely cause diarrhea. So tomorrow i am switching to regular water and mouth wash (not to drink of course, even though some have alcohol in them, and i do miss alcohol at the moment). It might not do anything at all, but surely worth a try

[kat73]

TeddyB - Trey is being very silly about the psyllium husk.  It is completely mainstream, tried and true, in lots of OTC stuff you see on any grocery or drug store shelf.  Not hippy dippy.  More like Old People!  Powder is the best form.  No need to grow and grind your own! (That's a joke.) 

 

If you hear gurgles, then you're going to have diarrhea at some point in the day, and it is the sound of water going too fast through your intestines.  The psyllium husk absorbs many times its weight in water, effectively (but gently, temporarily) blocking your upper intestine long enough for the food to be processed properly and carried onward to get absorbed into your system in the large intestine.  This way, you don't have water and undigested food whooshing too fast through the pipes:  diarrhea.  Just eat two Metamucil wafers at breakfast with 8 oz of coffee or tea to wash it down.  No more gurgles will you hear.

[TeddyB]

TeddyB - Trey is being very silly about the psyllium husk.  It is completely mainstream, tried and true, in lots of OTC stuff you see on any grocery or drug store shelf.  Not hippy dippy.  More like Old People!  Powder is the best form.  No need to grow and grind your own! (That's a joke.) 

 

If you hear gurgles, then you're going to have diarrhea at some point in the day, and it is the sound of water going too fast through your intestines.  The psyllium husk absorbs many times its weight in water, effectively (but gently, temporarily) blocking your upper intestine long enough for the food to be processed properly and carried onward to get absorbed into your system in the large intestine.  This way, you don't have water and undigested food whooshing too fast through the pipes:  diarrhea.  Just eat two Metamucil wafers at breakfast with 8 oz of coffee or tea to wash it down.  No more gurgles will you hear.

 

I will probably try Psyllium husk if my current routine does not help. I have at least found that eating fat/greasy foods triggers my nausea and diarrhea, so i am thinking of having it checked out with a blood test, perhaps test for levels of Lipase and Amylase, my onc will hopefully know more of this than me. If this turns out to be my problem, then a dose reduction or switch should most definitely be on the table. I dont know if i can get Metamucil Wafers in Norway, could not find anywhere that sells it. But Psyllium powder and seeds are accessible

[Red Cross Kirk]

I'd recommend 200mg per day.  I've had less muscle cramps and no eye bleeds since reducing.

[TeddyB]

http://www.ascopost....eloid-leukemia/

Reducing Doses and Stopping Tyrosine Kinase Inhibitors Gain Favor in Chronic Myeloid Leukemia

 

Thanks, i have printed it out and will take it with me to my next appointment.

 

I'd recommend 200mg per day.  I've had less muscle cramps and no eye bleeds since reducing.

 

If my next pcr comes back negative, i will ask for a reduction.

Only GI issues and some annoyance with tinnitus and fatigue for me, but the GI issues are the worst. My new low fat, low sugar and no alcohol diet seems to be helping though