Jump to content


Newly diagnosed.... Worried about my wife's side-effects

  • Please log in to reply
6 replies to this topic

#1 Puneet



  • Members
  • PipPip
  • 14 posts

Posted 03 December 2014 - 07:55 AM

Hi Guys,


As you are aware, my wife has been newly diagnosed with CML and was on Sprycel 100 mg (basically 2 50 mg pills at night). Last month, her Onc reduced it to 100 mgs MWF (3 days) and 50 mgs for other fours days of the week. He plans to bring it down to 70 mgs 7 days a week as soon as the current stock get's over.


Now.... here is the concern..... For the last 3 weeks, she has been having lot of pain in her right thigh bone. To the point that she is not able to sleep on her right side and needs to be massaged. Some days she has trouble walking.... She was able to narrow it down to the bone (and not the muscle). That has me worried.


Secondly, she has been extremely lethargic and complete loss of energy. Last time when we talked to her onc, he was not worried and feels that it should get better - that was almost 1.5 months ago. Her WBC had also crashed to nearly 1.3. But her feeling extremely tired has not gotten better. We are really hoping that this not something that she will have to cope for long-term. She is not sure and I am hopeful.


This month, she is supposed to get her ABR-BCL test done - which will happen next week. Should we wait till we get the report or go in to meet the doctor as it has been 1.5 months since last visit.


Any help would be highly appreciated.




#2 Trey


    Advanced Member

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

Posted 03 December 2014 - 09:34 AM

With her WBC so low, the RBC (and therefore HGB and HCT) must also be very low, so she certainly has anemia, and maybe severe.  So her lethargy is understandable and even expected.  I assume the low blood counts are the reason for the lower dosage.  She should be getting weekly CBC tests at this point.  This lower dosage may help, but it could take quite a while.  Many struggle with low blood counts for extended periods of time.  The body is trying to switch from uncontrolled proliferation of leukemic cells to now making good (non-leukemic) cells, and that changeover takes some time.  Although CML is primarily a disease of the white blood cells, it also affects the red blood cells and platelets since the originating leukemic cell is so high in the blood making system.  You can read more about that in a paper I wrote:



The bone pain is also a common side effect of the drug.  The CML TKI drugs cause the bones to turn over minerals faster.  This can cause bone pain, especially at first.  Such pain is often in the thigh bones.  This should subside over time, but probably not as quickly as she would want.  The most recommended pain reliever for us is naproxen.  Tylenol is too hard on the liver and ibuprofen can interfere with TKI drug absorption.


So overall I would not expect quick resolution to these issues.  Often women struggle more than men with the anemia issue, so it will not likely go away soon.  She should take a good multivitamin and extra Vit C at a minimum.  But there is no long term solution except for the body to adjust and make more good red blood cells.  The bone pain should generally lessen and maybe even go away within a few months. 

Edited by Trey, 03 December 2014 - 09:35 AM.

#3 jjg


    Advanced Member

  • Members
  • PipPipPip
  • 80 posts

Posted 03 December 2014 - 08:06 PM

The first year of treatment is often harder than those that follow. I struggled most between 3-6 months purely due to drug related fatigue as my RBCs were never particularly low. It takes time for the body to adjust and I think it's pretty normal to be sad/pissed off about the changes. Hopefully, as things get better you enjoy the improvement rather then compare to where things were pre-diagnosis. A big step for me was realizing that the doctors would never be able to solve the fatigue problems and that I needed to make adjustments, also moving from gleevec to tasigna saw big improvements. When I have energy I use it and when I don't have energy I (mostly) accept it and (mostly) recognise that some time very soon I'll have to rest. When I was first on treatment my husband gave me lots of support when I was tired, now it's just part of life except he gets annoyed when I push on and don't rest because we both know that until I rest I'm just going to be grumpy, bitchy and no good at anything. 

Dx Dec 2010 @37

2x IVF egg collection

Glivec 600 & 800mg

PCRU March 2012

Unsuccessful pregnancy attempt - relapsed, 3 months interferon (intron A), bad side effects from interferon

Nilotinib 600mg Oct 2012

PCRU April 2013, 2 years MR4.5 mostly PCRU with a few blips

April 2015 stopped again for pregnancy attempt (donor egg), pregnant first transfer, 0.110 at 10wks, 2.1 at 14wks, 4.2 at 16wks, started interferon, slow dose increase to 25MIU per wk, at full dose PCR< 1 for remainder of pregnancy

Healthy baby girl Jan 2016, breastfed one month

Nilotinib 600mg Feb 2016

MMR May 2016

PCRU Feb 2017

#4 CallMeLucky


    Advanced Member

  • Members
  • PipPipPip
  • 216 posts
  • LocationCT

Posted 04 December 2014 - 04:10 PM

Right now she is sick so she is not feeling well. Over time the mess will work and she will feel more well. This can be anywhere from a few months to a year or two. She may never feel 100% but quality of life should improve to point where it is not unreasonable.
Give it time it's hard at first.
Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%


#5 pammartin


    Advanced Member

  • Members
  • PipPipPip
  • 631 posts
  • LocationPennsylvania

Posted 05 December 2014 - 12:54 AM

My first six months were pretty rough, the first month was awful with the headaches and the lack of energy.  I spent months on the couch only getting up when I had too or to try to make some form of dinner.  I think it was about six months or so before I started feeling a bit like myself.  I started Sprycel in October and by spring I felt good enough to get out in the yard and clean up some branches and leaves.  That sticks in my mind because it was the first time I remember feeling good enough to work outside. 


The side effects are difficult, and most times none of us are feeling much like ourselves because we didn't realize we were ill.  Everything catches up and once and we slow down to a crawl.  I remember going through so many emotions, anger, fear, frustration, sadness, and often they tended to hit all at once.  I didn't want people around me and I would become angry if someone kept asking me how I was.  It was only me venting, but it was a reaction to what was happening.


This is all an adjustment period and it is not a fun time.  Positive thoughts to you, share here when ever you have the thought, and we discuss many different subjects.  This board is a great place to find answers, vent, support, and sometimes laugh. 


#6 Puneet



  • Members
  • PipPip
  • 14 posts

Posted 11 December 2014 - 04:57 AM

Thanks folks for responding back to me. It has been four months and the fact that she is down and out is hurting her. She was otherwise a very active person and so now becoming a couch potato (becaue of this disease) is what is bugging and demoralizing her most. What makes it more difficult is the fact that this is the second time we are encountering this. My daughter was treated for ALL and so this is so deja-vu for us. She does not believe whatever I say or do because of our previous experience. I am really hoping that her body adopts to the new change quickly and she is able to recover most of her energy (at least 80%).


Trey: Here RBC is not really that low (although it is on the lower side of the range) with her HGB at around 11. So, not sure if she is anemic. I will take your recommendation on Vitamin C and multi-vits......

#7 gerry


    Advanced Member

  • Members
  • PipPipPip
  • 1,035 posts

Posted 11 December 2014 - 07:29 PM

Exercise can help with the fatigue.

1 user(s) are reading this topic

0 members, 1 guests, 0 anonymous users