106 replies to this topic

[hannibellemo]

In "a few weeks"? It sounds, if nothing else, uncomfortable.

[TeddyB]

TeddyB - Fecal compaction!  What next down there?  Do they think it has anything to do with the fistula procedures?  I'm just free-associating here, but could there have been some effect from anesthesia products of some kind?  Or pain relievers?  Also, the mind can play tricks on the body - if elimination is associated with pain (fissures, fistulas, etc.), then maybe the body holds off on pushing that stuff out?  I'm sure you are thoroughly sick and tired of dealing with this part of your anatomy!  Thinking of you.

 

Hello Kat. "Compaction" may indeed be the correct translation

My nausea (other than the "usual" Gleevec nausea) started around the same time the surgeon first poked around in my fistula (before pain killers and anesthesia)  with a sharp instrument (felt like a steel wire) and around the same time i had my first enema

 

 

In "a few weeks"? It sounds, if nothing else, uncomfortable.

 

Hello

I actually do not feel much discomfort or pain in the area, "only" nausea, but knowing something is in there, or at least thats what my doctor thought (after percussion, and palpation of the abdomen) , i sure want to get it checked out as soon as possible. I am pretty sure it has nothing to do with my spleen as it was more in the colon region, but i tend to always think the worst in these situations, so my mind is kind of racing with thoughts at the moment.

[TeddyB]

Hmmm, over the last few months my creatinine has been a bit over reference levels (109) when taking blood tests in the mornings, and just inside of reference levels (103) when taking bloodtests later in the day. (Reference levels in my lab is 105, i see 110 other places)  Is 400mg Gleevec to much to handle for my kidneys i wonder?

 

Maybe this can in some way be related to my nausea?

 

From livestrong:

 

Symptoms associated with a high creatinine are most often due to reduced kidney function. Examples include:
-- fatigue
-- headaches
-- loss of appetite
-- nausea or vomiting
-- weight loss
-- itchy skin
-- swelling of the hands and feet
-- increased or decreased urination
-- colorless or dark urine
 

 

Maybe its time to cut the red wine and Akevitt completely..........

[kat73]

TeddyB - Reporting is different in my lab for creatinine: normal range is somewhere around .5 - 1.1 but I think this is just a decimal point thing.  Anyway, yours, I think, are not alarmingly high and I don't think you need to worry about those kidney symptoms listed.  I think you'd have to be pretty darned far along and sick to get those.  Also, if you have no protein in your urine (micro is OK), then you don't have to worry about kidney disease right now. 

 

I can't help but think about how much you've been through and for how long, and how particularly unpleasant it has been.  I think generalized nausea might not be such a bad response by your body when approached with yet another pokey instrument.  After all, YOU can't scream, "Get away from me with that - I've had ENOUGH!" but maybe your poor innards can.  Also, maybe he roughed up a nerve in there that triggers nausea, and it needs to settle down and heal.  A thought.

[TeddyB]

TeddyB - Reporting is different in my lab for creatinine: normal range is somewhere around .5 - 1.1 but I think this is just a decimal point thing.  Anyway, yours, I think, are not alarmingly high and I don't think you need to worry about those kidney symptoms listed.  I think you'd have to be pretty darned far along and sick to get those.  Also, if you have no protein in your urine (micro is OK), then you don't have to worry about kidney disease right now. 

 

I can't help but think about how much you've been through and for how long, and how particularly unpleasant it has been.  I think generalized nausea might not be such a bad response by your body when approached with yet another pokey instrument.  After all, YOU can't scream, "Get away from me with that - I've had ENOUGH!" but maybe your poor innards can.  Also, maybe he roughed up a nerve in there that triggers nausea, and it needs to settle down and heal.  A thought.

 

Thanks for making me feel a bit better. I have to agree with you on the kidney part, and maybe all i need is some time for the body to heal

[TeddyB]

So, i managed to get an earlier appointment for both CT of my abdomen and ultrasound scan of my gall bladder and surrounding area.

The first thing the doctor said when taking the ultrasound was that i had A LOT of gas.

 

I am not sure if my onc checks my lipase and amylase levels, maybe that could be a good idea as well, even though i thought it was mainly Nilotinib which has the most issues with the pancreas.

 

Getting the results from CT and Ultrasound tomorrow, should be interesting..........

[kat73]

Fingers crossed you get an answer - one that includes an easy fix!

[TeddyB]

Fingers crossed you get an answer - one that includes an easy fix!

 

Thank you kat

 

No easy fix, but everything looked normal, no obstruction in the intestines and no gallbladder issues. Also liver, kidneys, pancreas and glands all looked fine, which is great news in itself, but i was hoping for an easy fix for my nausea issues.

I have been having some issues (nausea) with fatty foods, especially fried foods, maybe i just need to eat healthier and start excising more.

[kat73]

Don't excise anything without permission!

[TeddyB]

Don't excise anything without permission!

 

If it will help my nausea....................meant exercise of course

The good thing is i can blame that typo on a combo of Gleevec and red wine induced brain fog

[TeddyB]

Hello again

 

Quick update of pcr results, and now my onc wants to do a BMB because of the 0.02%, what the heck?

I said there was no point of doing that if i kept below 0.1%, or even 1%, but she insisted 0.01%........

I might go for a second opinion, i am not taking a BMB "just because".

If the PCR test i took yesterday shows a big increase (will probably have to wait 3 weeks for the results), then i will do it, but as long as its way under 0.1% i dont see the point.

 

What do you guys think?

 

 

               International Scale:

          BCR-ABL1/ABL1        BCR-ABL/GUS

04.11.12     76%                         21%

06.14.12     17%                         10%

07.26.12     3%                           3%

10.24.12     0.10%                      0.08%

01.15.13     0.014%                      0.01%

04.11.13     0.014%                      0.01%

07.16.13     0.032%                      0.03%

09.12.13     0.021%                      0,02%

12.04.13     0.013%                      0,01%

03.05.14     0.017%                0.02%

06.11.14     0.025%                0.02%

09.12.14     0.018%                0.02%

12.11.14     0.031%                0.03%

03.23.15     0,014%                X.XX%

15.06.15     0,013%                X.XX%

16.09.15     0,01%                  X,XX%

16.12.15     0.01%                  X.XX%

16.03.16     0.01%                  X.XX%

xx.06.16     PCRU

12.09.16     0.015%

xx.01.17     PCRU

xx.04.17     0.02%

xx.06.17     0.02%

[scuba]

Any Oncologist that recommends and/or insists  on a BMB when your PCR is less than 0.1% and you have had no other indications (other chromosomal or CBC abnormalities) should not be your doctor. The variability of your results are in the noise of the test.

[TeddyB]

Any Oncologist that recommends and/or insists  on a BMB when your PCR is less than 0.1% and you have had no other indications (other chromosomal or CBC abnormalities) should not be your doctor. The variability of your results are in the noise of the test.

 

Thank you Scuba, thats what i thought.

 

My CBC "abnormalities" were:

 

Hb: 13.2

B-Het: 0.39

B-Erytrocyte: 4.0

Uric Acid: 500

S-Creatinine: 119

eGFR: 65

 

All were almost within normal range, and just off by a tiny bit, maybe not even off on some scales, but it was the PCR of 0.02% that worried her. I have seen simular "abnormalities" earlier as well.

I was moved from the leading CML hospital (because i was doing fine) to a small town hospital nearby where i live, at the end of 2015, here they just take blood tests, ship them off, and i talk 10 minutes with my new onc.

 

WBC was 5.7, and she kept nervously feeling on my spleen like it was a pizza dough for 2-3 minutes.

 

Right now im more worried about the BMB than the CML......i thought i was doing well and i still think so.....

[scuba]

You do not need a BMB. Your oncologist "feeling" your spleen while knowing your WBC is 5.7 shows ignorance. You should ask your oncologist how many CML patients she treats. That answer should be informative to you.

[Trey]

T,

 

Your new Onc would be better at making pizza dough than making assessments of your CML status. 

[TeddyB]

You do not need a BMB. Your oncologist "feeling" your spleen while knowing your WBC is 5.7 shows ignorance. You should ask your oncologist how many CML patients she treats. That answer should be informative to you.

 

I think she only has 4-5, and they are only sent to there when they are "safe"

 

T,

 

Your new Onc would be better at making pizza dough than making assessments of your CML status. 

 

Hehe, even though i should not be glad to hear that, i actually am, because at least now i know im not crazy.

I will contact my GP and maybe ask for a change in oncs or at least ask what she thinks.

If i cant change, i will at least ask my onc to get a second opinion from the specialists before poking me.

 

 

Thank you both for answering.

[scuba]

Your oncologist could fulfill a different role - one of technician. She can maintain and prescribe your medication and perform the blood tests because she has the authority to do so. But leave interpretation and action planning to someone else. In your case, you don't need much planning and care. You're stable, borderline PCRU with near normal blood tests. Your focus should be on your general health.

[TeddyB]

Your oncologist could fulfill a different role - one of technician. She can maintain and prescribe your medication and perform the blood tests because she has the authority to do so. But leave interpretation and action planning to someone else. In your case, you don't need much planning and care. You're stable, borderline PCRU with near normal blood tests. Your focus should be on your general health.

 

I agree, and as long as she does not poke me with a screwdriver i am happy.

 

By the way, got my latest test results back: "BCR-ABL not detected", at least now she wont push for a bmb (not that i would have taken it unless i was >0.1%)

 

Wine tonight!!!!!!!!!!!!!!

[kat73]

Congratulations, TeddyB!  Hope all the other troubles have settled down, as well.  I seem to have put the fissure and abscess adventures to bed for good.  But now, I may have to start Bosutinib which has diarrhea as a big side effect - what about all my new religious habits of high fiber diet?  Yikes!

[TeddyB]

Congratulations, TeddyB!  Hope all the other troubles have settled down, as well.  I seem to have put the fissure and abscess adventures to bed for good.  But now, I may have to start Bosutinib which has diarrhea as a big side effect - what about all my new religious habits of high fiber diet?  Yikes!

 

Thank you kat

Still nausea going on 1-2 days pr week, i think i will start drinking the Gleevec for a while, and see if that helps. The diarrhea has settled at least. Fissure and fistula seem to be healing nicely, not much traces left from what i can see.

 

Bosutinib in your future? Lets hope your stomach manages the switch well, even with the high fiber. Please, keep me posted.