Jump to content


Photo

Fatigue on Gleevec again

fatigue gleevec

  • Please log in to reply
27 replies to this topic

#1 max1m

max1m

    Member

  • Members
  • PipPip
  • 21 posts

Posted 30 August 2015 - 07:10 PM

I am again running into fatigue with Gleevec about 3 months in.

I hit these symptoms around 1.5 months after starting Gleevec. At that time oncologist gave me

a break for 9 days and then resumed. The second time around it has been smoother sailing

in terms of other side effects, but right around the 1.5 month mark I again started feeling fatigue

symptoms which don't seem to be improving. One thing that seems to help is eating something

every 2 hours. I go through around 4 cycles of fatigue feeling better with eating/some rest/caffeine and then more fatigue throughout the day.

 

Do these symptoms get better over time or we just get used to them? I was almost like normal before these symptoms started showing up again.

 

All my blood numbers from last week look quite good even though near the lower ends of normal.

WBC 4.1 RBC 4.45 HGB 12.7 Nuetrophils 2.2 Platelets 181. I am due for a PCR in the next couple of weeks (it was around 36% 1.5 months back).

Also, I started taking iron supplement since I took the break so I think that my iron levels should be fine.

I have also started taking multi-vitamins (Any suggestions on which one is good)?

 

What is striking is that the symptoms have reappeared around the same time after being on Gleevec around 45 days.

Last time I suggested to my onc. that I break the dosage into 2 per Trey's suggestion but he said lets try again with the full 400mg at night. He also said that he might consider lowering dosage if we hit issues again. However, from what I read, dosage reduction is considered only with lower numbers not just side effects. So, I am not sure whether that will happen or is a good idea.

 

Also, I had one good day last week and what I had done different was eat around 1.5 times my usual dinner with more proteins but I don't think I can eat that much everyday. I thought that maybe having the pill in the morning after lunch might be better in terms of more food being in the stomach through the day. Or I will try to convince the onc. to allow me to split the dosage.

 

I have an appointment coming up in 2 weeks and I fear I am going to break down and ask for dosage reduction as sustaining the status quo is taking a lot determination.

 

Thanks.

 



#2 gerry

gerry

    Advanced Member

  • Members
  • PipPipPip
  • 1,035 posts

Posted 30 August 2015 - 07:44 PM

Do you have an exercise regime at all, exercise can help with the fatigue even if you're just looking at going for a half hour walk every other day.

Plus have you tried taking the Gleevec at night?



#3 max1m

max1m

    Member

  • Members
  • PipPip
  • 21 posts

Posted 30 August 2015 - 08:14 PM

gerry,

I used to exercise regularly before I was diagnosed but stopped after due to fatigue and shock of diagnosis. I have started with some push ups and small walks this week and hope to increase the frequency.

 I have been taking the Gleevec at night after dinner around 8 and there is a 12 hour gap before I have breakfast in the morning which I suspect may be causing some of the issues. However, overall, I am eating at or beyond my capacity and have regained 8 of the 10 pounds I had lost already.



#4 Trey

Trey

    Advanced Member

  • PS Beta Group
  • PipPipPip
  • 1,705 posts
  • LocationSan Antonio, Texas

Posted 30 August 2015 - 10:13 PM

Part of Gleevec fatigue is due to changes in sugar metabolism.  You are correct that diet changes such as eating smaller portions and more often can help.



#5 kat73

kat73

    Advanced Member

  • Members
  • PipPipPip
  • 884 posts
  • LocationWashington, DC area

Posted 31 August 2015 - 09:59 AM

I hate to be a downer here, but you asked, so - I have never found a solution to the fatigue and it is very real.  (Six years.)  When I was at your point, I was distressed beyond words and was acutely aware of my "before" and "after" level of energy.  It's been so long now that I have adapted to it, and I only mourn the way things used to be about one-tenth of the time.  It's sort of a distant memory.  I do get frustrated on a daily basis, when I have started in on something and find that I can't finish it - or worse, that I have three things of equal importance that I need to get done, but I know - I KNOW that I will have to choose only two.  Which two?  I don't know - I have to see how the day goes.  I'm not too much fun to travel with!  I applaud your efforts to observe yourself and try and understand.  If you find a remedy for yourself (as others have, I believe) then it will be worth it.  But be prepared to find that you might have to get used to it.  I have never found that exercise helped, btw.  It just made me more fatigued!  Also, sore for a week, not just the next day. But others swear by exercise, so try and see what you think.  I have never been able to discern a pattern to the fatigue.  One day or hour I feel good and can walk fairly quickly, and another random day or hour my legs feel filled with sand.  Wet sand. During the day I can just suddenly be overwhelmed by fatigue - out of seemingly nowhere.  Anyway, I've given up looking for an answer.  I just make sure I get outside every day because that lifts my spirits, and I try to capitalize on my energetic period to get as much done as possible really quickly, I'm mindful of when I'm getting low on fuel and make sure I eat something good for me, and I sit down with a book or close my eyes when I'm tired, and let myself fall asleep when sleepiness comes over me.  I say no to a lot of stuff ahead of time - I've learned!  These are the ways I cope.  Six years ago I was taking the stairs two at a time and routinely ran down them - a zillion times a day, singing as I went.  Now I hang on the bannister and will myself to put one foot in front of the other and KEEP GOING.  All the docs seem to care about is shortness of breath - I say, no none of that - I just can't make my muscles move - my body just screams to please stop and hold still, don't lift any appendages - get horizontal, now.  There may be something to the glucose level theory - I don't know - my levels are always normal and about the same when I do bloodwork - and that has been done under different conditions and times.  I'm on Sprycel, but I began the fatigue while on Gleevec.  It was pretty night and day obvious.  Anyway, apologies again for the depressing note, but I figured you need to hear all sides.  I fervently hope you get some relief.


Dx July 2009 on routine physical.  WBC 94.  Started Gleevec 400 mg Sept 2009.  MMR at 2yrs.  Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved.  Kidney issues developed because of Gleevec.  Switched to Sprycel 70 mg in Aug 2011.  Above side effects disappeared or improved.  Have been MR3.5 - 4.5 ever since.  Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017.  After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS.  Pleural effusion returned within a couple of months, same as before (moderate, left side only).  Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved.  At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.


#6 Gail's

Gail's

    Advanced Member

  • Members
  • PipPipPip
  • 634 posts

Posted 01 September 2015 - 12:30 AM

The fatigue is real. I'm just 6 months in and take gleevec split dose 200 in am and pm. I just had some blood tests due to fatigue. My CBC is fine but my ferritin (usable iron) was 5 which is less than half the low end of normal. My onc wants me to add iron supplements. I just messages her back to find out if it will interfere with gleevec absorption. I've had ferritin tests before but they were never this low. It took a long time of iron supplementation to budge my ferritin up. Not looking forward to GI side effects either. I sound like Debbie Downer. Hope treating this will pump up my energy levels.
Diagnosed 1/15/15
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088

#7 gerry

gerry

    Advanced Member

  • Members
  • PipPipPip
  • 1,035 posts

Posted 01 September 2015 - 02:13 AM

I used to take my iron tablets when I took the Gleevec, plus the Gleevec is coated in iron. I now have too much iron since I've become post menopausal - specialist didn't pick that up, GP did.

#8 Antilogical

Antilogical

    Advanced Member

  • Members
  • PipPipPip
  • 284 posts
  • LocationPittsburgh, PA

Posted 01 September 2015 - 12:31 PM

I'm struggling with the iron issue, as well.  My onc saw an unusual drop in iron and MCV, and sent me for a visit with a GI specialist, plus a couple of IV iron infusions.  GI-guy was not alarmed, as the iron had started to come up by that time (prior to the infusions).  Now I am to take iron supplements so I don't have to do anymore infusions.  I tried the ferritin supplements a couple of times, each time suffering from severe stomach pain.  Now I'm trying a product from GNC called "Gentlesorb Iron".  Took it last night - no pain this morning.  Woohoo!


Dx: Sudden severe anemia detected 07/2011, followed by WBC spike. CML Dx 02/2012.

Rx: 03/2012-Gleevec400.  Reduced 02/2013 to Gleevec300 due to side effects (low blood counts).

Response: PCR-Und within 7 mo. on G400. Maintained MMR4-MMR4.5 on G300. PCR-Und since 02/2016.


#9 max1m

max1m

    Member

  • Members
  • PipPip
  • 21 posts

Posted 01 September 2015 - 03:47 PM

kat73, thanks for your comments. I had a better couple of days since :) I do understand that for some of us there may be no solution to the fatigue and we just learn to deal with it. What I have observed/tested over the last couple of days is that it is definitely related to the glucose level somehow. I will talk to the onc. to see if there is some testing we can do throughout the day to establish that as the numbers always appear in range during the blood tests.

 

Also, those taking iron supplements consider taking it with Vitamin C to help with absorption of iron.



#10 gerry

gerry

    Advanced Member

  • Members
  • PipPipPip
  • 1,035 posts

Posted 01 September 2015 - 06:42 PM

I used to take Fefol (which supposedly has a slow release of iron) not sure if it is available in the States.



#11 OhNanna

OhNanna

    Member

  • Members
  • PipPip
  • 21 posts
  • LocationBakersfield, CA

Posted 02 September 2015 - 01:26 AM

Can someone provide information regarding the comments about glucose levels? I'm also a diabetic and about two months into taking Gleevec. I hate feeling crappy most of the time, fatigue, headaches and nausea and I'm really struggling to keep my glucose level. I'm having super high highs and lots of crashes too! Any ideas?

#12 Trey

Trey

    Advanced Member

  • PS Beta Group
  • PipPipPip
  • 1,705 posts
  • LocationSan Antonio, Texas

Posted 02 September 2015 - 09:04 AM

Gleevec has been found to lower blood sugar levels, which for diabetics is an improvement in sugar management.  Some type 2 diabetics have been able to decrease or eliminate insulin therapy. 

 

http://jco.ascopubs....22/22/4653.full

 

There is some question about whether this is a long term issue or self-corrects over time.  For me, my blood sugar levels went back up over time.



#13 Antilogical

Antilogical

    Advanced Member

  • Members
  • PipPipPip
  • 284 posts
  • LocationPittsburgh, PA

Posted 02 September 2015 - 07:05 PM

Ditto, Trey.  My blood sugar is back to "normal".  (Sigh.)

However, my cholesterol is lower than ever.  Awesome!


Dx: Sudden severe anemia detected 07/2011, followed by WBC spike. CML Dx 02/2012.

Rx: 03/2012-Gleevec400.  Reduced 02/2013 to Gleevec300 due to side effects (low blood counts).

Response: PCR-Und within 7 mo. on G400. Maintained MMR4-MMR4.5 on G300. PCR-Und since 02/2016.


#14 gerry

gerry

    Advanced Member

  • Members
  • PipPipPip
  • 1,035 posts

Posted 02 September 2015 - 07:14 PM

Ditto, Trey.  My blood sugar is back to "normal".  (Sigh.)

However, my cholesterol is lower than ever.  Awesome!

 

I found the same thing about the cholesterol, went off my Lipator while on Gleevec. Cholesterol has slowly risen again now I'm off Gleevec and I'm back on the Lipator.



#15 OhNanna

OhNanna

    Member

  • Members
  • PipPip
  • 21 posts
  • LocationBakersfield, CA

Posted 03 September 2015 - 12:29 AM

Thanks Trey! This might be the first good news so far! The Oncologist has me taking Prednesone temporarily with the Gleevec because of side effects (sever rash, hives, itching), with the plan to slowly reduce and eliminate as my body accepted the Gleevec. I knew that was the probable cause of the high blood glucose readings. This might explain some of the crashes. Of course I'd love to reduce oral mess and insulin!! The last two months have been totally miserable, so a little good news is great!

#16 Gail's

Gail's

    Advanced Member

  • Members
  • PipPipPip
  • 634 posts

Posted 03 September 2015 - 12:36 PM

First 3 months of gleevec I had to cut my insulin in half. Are a lot more carbs between bouts of nausea just to keep sugar up. Stayed there a few months and noticed sugars creeping up. So increased insulin a bit. This week has been really hard for lows. The other night ate a higher carb snack and my sugar was 232. 2 hours later it was 40. My primary doc told me she's really glad I wake up when it drops like that. I spent the next couple of days working like mad to keep my sugar up and being incredibly nauseous. Made it hard to eat.
Diagnosed 1/15/15
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088

#17 kat73

kat73

    Advanced Member

  • Members
  • PipPipPip
  • 884 posts
  • LocationWashington, DC area

Posted 03 September 2015 - 01:35 PM

Oh, Gail's, what a hard road!


Dx July 2009 on routine physical.  WBC 94.  Started Gleevec 400 mg Sept 2009.  MMR at 2yrs.  Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved.  Kidney issues developed because of Gleevec.  Switched to Sprycel 70 mg in Aug 2011.  Above side effects disappeared or improved.  Have been MR3.5 - 4.5 ever since.  Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017.  After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS.  Pleural effusion returned within a couple of months, same as before (moderate, left side only).  Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved.  At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.


#18 OhNanna

OhNanna

    Member

  • Members
  • PipPip
  • 21 posts
  • LocationBakersfield, CA

Posted 04 September 2015 - 02:05 AM

Gail's I feel your pain! I hate those lows and the horrible feeling that comes with them. I guess it does help to know that I'm not the only one. Or that you are not the only one!

I sort of feel duped, the doc said this would be easy, just take one pill a day. I thought easy-peasey, I can take one pill. He really mislead me about these crazy side effects.

#19 Antilogical

Antilogical

    Advanced Member

  • Members
  • PipPipPip
  • 284 posts
  • LocationPittsburgh, PA

Posted 04 September 2015 - 10:43 AM

I'm sure your doctor did not intend to mislead - he just has a different point of reference, OhNanna.

 

We (patients) compare "before diagnosis, when I felt good" to "now I'm on TKIs dealing with these side effects".

 

Doctors compare  "traditional chemo" and "targeted chemo".  For most people, both the process and the side effects are easier with TKIs.  However, we take TKIs daily, so some of us never get a break from certain side effects.  That's the hardest part, I think.


Dx: Sudden severe anemia detected 07/2011, followed by WBC spike. CML Dx 02/2012.

Rx: 03/2012-Gleevec400.  Reduced 02/2013 to Gleevec300 due to side effects (low blood counts).

Response: PCR-Und within 7 mo. on G400. Maintained MMR4-MMR4.5 on G300. PCR-Und since 02/2016.


#20 rcase13

rcase13

    Advanced Member

  • Members
  • PipPipPip
  • 523 posts
  • LocationCharlotte, NC

Posted 04 September 2015 - 12:05 PM

Yeah you hit the nail on the head Antilogical. Our side effects are generally milder than traditional chemo but they never end and we are never cured. We are in this for the long haul.

A colleague of my wife had testistical cancer. It was rough for him for a couple months. He is 100% recovered now and cancer free.

10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)

01/02/2015 0.06% Tasigna 600mg
04/08/2015 0.01% Tasigna 600mg
07/01/2015 0.01% Tasigna 600mg
10/05/2015 0.02% Tasigna 600mg
01/04/2016 0.01% Tasigna 600mg
04/04/2016 PCRU Tasigna 600mg
07/18/2016 PCRU Tasigna 600mg
10/12/2016 PCRU Tasigna 600mg
01/09/2017 PCRU Tasigna 600mg
04/12/2017 PCRU Tasigna 600mg
10/16/2017 PCRU Tasigna 600mg
01/15/2018 PCRU Tasigna 600mg

 

Cancer Sucks!






1 user(s) are reading this topic

0 members, 1 guests, 0 anonymous users