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It became real to me this weekend


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#1 amcantley

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Posted 16 September 2015 - 04:43 PM

 (This is whiny) I was diagnosed on 8/26 and started Sprycel 100 mg on 9/5. I've had some side effects but considered them par for the course. This past Saturday after going to a bracelet making class with my sister, I came home and felt warm but not bad. I checked my temperature a couple of times and I had a rising fever. I figured I'd call my oncologist and they'd say "don't worry." Instead they called me right back and said since my fever was 102 I needed to go to ER to get blood work done. So I went. Funny thing, when you say you have leukemia and a fever you get bumped to the front of the line. I figured the whole thing would be no big deal and I'd go home after having some vials drawn. Boy, was I wrong! My pulse was 133 and my BP was really low. They ended up admitting me after drawing blood for cultures. When I finally left the hospital yesterday I had been pumped full of IV fluids and IV antibiotics all the cultures came back negative, so no infection, but I still have an elevated pulse and a fever. Over the course of my stay I became very frustrated with my inability to control my body, with how it has betrayed me, how this body that was from all outward appearances the picture of health not even a month ago, is now struggling to keep up with the minor things I ask of it. Like fight a common cold or making it through a work shift. So although, everything is as good as it could be (no infection) the reality of where I am struck me. I kept the smile and my sense of humor up because I feel I owe it to others. I came closest to expressing my disappointment to my husband but still held back much of it, just because I don't want to put anything else on him. But this really sucks! I hate that my body has betrayed me! I know CML is very treatable and I feel good about that. But I am frustrated by the reality of it all. Thanks for listening. I'm so glad I found this group.



#2 kat73

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Posted 16 September 2015 - 05:09 PM

amcantley - You have had a real shock and a lousy beginning; that was bad luck.  I know so well that feeling of betrayal by your body. I hope Trey will come along and give you some advice about the fast pulse and elevated temperature - that's over my paygrade.  But I can tell you that many of us have spent too much energy trying to present a brave face to the world and spare our loved ones any burden, just as you are.  I will tell you that you will need to stop, but you will find this out for yourself.  Let people help you.  Don't pretend things are OK when they're not.  Learn to say no and learn when you need to quit and take a rest.  It might take a long while, but someday you will actually FEEL lucky and not just like you OUGHT to.  But not yet.  Just let yourself feel what you feel right now.  Concentrate on solving the problem in front of you, which is this pulse/temp issue.  Keep us posted


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.


#3 Trey

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Posted 16 September 2015 - 05:20 PM

The combination of fast heart rate and low blood pressure is called tachycardia.  It could have been brought on by a virus or as a side effect of the Sprycel or a combination of the two.  The high temperature points to likely involvement of a virus, which can easily go undetected by the doctors.  And add the TKI drug and odd things can occasionally happen.  You likely will not know what really happened unless it happens again. 

 

These issues can hinge on small changes caused by the drugs.  Overall the body usually adapts and figures it out. 



#4 dlb65

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Posted 16 September 2015 - 07:13 PM

I just thought I might add that in a newly diagnosed patient started on Sprycel, an experienced Hematologist in the picture you describe of elevated heart rate (tachycardia), decreased blood pressure (hypotension) and a fever, would initially need to rule out fluid accumulation in the heart known as a Pericardial effusion, a well known side effect of Sprycel. In the acute setting this can lead to a potential situation known as a CardiacTamponade (where the fluid accumulation limits the ability of your hear to fill with blood) which presents with Tachycardia and hypotnesion. The diagnosis is confirmed by an Ultrasound of your heart.  Additionally fluid accumulation in either the Pericardium or the lining of the lungs (Pleura), both associated with Sprycel, can develop an inflamatory reaction (Pericarditis or Pleuritis) which can explain the elevated temperature.

I can't say for sure if this applied to you, but it is a non-infectious explanation for your situation which luckily resolved. Hope this helps and as mentioned you likely will not know what really happened unless it happens again.



#5 chriskuo

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Posted 16 September 2015 - 08:14 PM



Several weeks after I switched to bosutinib, I did develop a fever, my sodium dropped dangerously low, and I ended up in the hospital for 5 days. No cause was found but it may have something to do with the fact that I took only a short break when switching and my pleural effusion had not cleared. Before I restarted bosutinib at a lower dosage, I took a 6-week break until my effusion cleared. Things have gone smoothly over the last 5 months.

#6 MsLaLa

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Posted 16 September 2015 - 09:40 PM

I literally just started Sprycel 100mg today, let's see how it goes.
­čî║MsLaLa

#7 Billie Murawski

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Posted 16 September 2015 - 11:56 PM

Ms LaLa, I've been on Sprycel for 5 years my biggest problem was the Sprycel headaches, they do ease up rather quickly my first 3 days were the worst. I started on 100mg now I'm down to 20mg. A lot of people who go on a tki have very minor side-effects or none at all. Try to relax and just let your body adjust to it. I remember my first pill it was Gleevac ,once I got the nerve to take a pill out of the bottle I must have held it for about an hour before I took it. Then I sat in my chair and waited to die or have some horrible side-effect, my phone was close by I was ready to call 911 my affairs were in order so I was ready for anything. I took the pill and waited and waited nothing happened I was so mad at myself for getting so worked up. I had stomache problems before G so eventually I had to go to Sprycel because G aggrivated it. We have ups and downs on these meds, that's what is so great about this board and knowing that other people have similar problems and they do go away is very reassuring. good luck  Billie



#8 CallMeLucky

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Posted 27 September 2015 - 10:04 PM

Yeah it's tough at first, the body has taken a beating with the stress and now new drug. Reality is though, the body that betrayed you is actually quite resilient and wants to make you proud. It will take a beating but it will keep going. It may show some wear, it may get sore or tired, but it will keep going for you.
You have a choice to make over time, forgive your body and support or stay mad at it. Eventually you will find forgiveness, acceptance and support. Right now it is still new and raw, but over time you will get there.
Imagine if you were talking with a sick child or even a sick pet and they were apologizing to you for getting sick because they know it's hard on you; what would you say to them?
Give your body a chance and hopefully you will see as I did. My body is not the same anymore, but I respect it and appreciate it a lot more than I used to. It's doing the best it can and I'm proud of it.

Best of luck to you.
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%
 

 


#9 scuba

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Posted 28 September 2015 - 08:01 AM

People who take Sprycel for the very first time and at full dose need to have their blood monitored weekly for the first month.

 

This is very important.

 

Sprycel at full dose can cause severe myleosuppression. Doctors and their patients need to be on the watch out for this. When Leukemic cells are high in number (at diagnosis), collapse of the leukemic system (which is good) brought on by the Sprycel leaves little immune protection, especially with bacteria unless the normal immune system can ramp up in its place. In many patients, the normal system can't ramp up fast enough (happened to me)  fast enough leaving a gap in protection.

 

I assume you had a CBC done while at the ER. What were the blood number? Low neutrophils and other white blood cells significantly below normal would be the tell tale sign. Treatment usually would be to lower dose or even stop to allow your immune system to pick back up.

 

Never let a fever go above 100 until your system is normalized. That can take months of treatment.

 

All the best


Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein

 

Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.

 

2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"


#10 amcantley

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Posted 28 September 2015 - 06:59 PM

Yeah it's tough at first, the body has taken a beating with the stress and now new drug. Reality is though, the body that betrayed you is actually quite resilient and wants to make you proud. It will take a beating but it will keep going. It may show some wear, it may get sore or tired, but it will keep going for you.
You have a choice to make over time, forgive your body and support or stay mad at it. Eventually you will find forgiveness, acceptance and support. Right now it is still new and raw, but over time you will get there.
Imagine if you were talking with a sick child or even a sick pet and they were apologizing to you for getting sick because they know it's hard on you; what would you say to them?
Give your body a chance and hopefully you will see as I did. My body is not the same anymore, but I respect it and appreciate it a lot more than I used to. It's doing the best it can and I'm proud of it.

Best of luck to you.

What a sweet post, thank you for your kind words and gentle reminder to be kind to myself. I'm a few weeks into this now and I can already see my body starting to adjust. I'm only good for about four hours at work before I get tired but my body is slowly adjusting to its new reality.



#11 Tedsey

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Posted 05 October 2015 - 05:34 PM

It appears from this board, heart and lung issues do not start soon after taking Sprycel.  They take some time to develop if they do.  I have been on dasatinib for over 5 years and I don't appear to have any issues that show up (although I have been freaked out about it and had it checked out).  I would not worry about that right now. 

 

As I have been delving into nutritional genomics, we are probably NOT responsible for most of the diseases we get.  How the cards fall in the creation of a human being appears to have a lot to do with how our parents, grandparents, and great-grandparents, etc. ate, behaved and what they were exposed to.  However, the media, some practitioners and many health websites, etc. love to blame the victim.  It is all around us.  Shame on those people who blame the sick for their illness and do nothing to help cure them!  They are inducing toxic shame and anxiety and we all know that ain't healthy!  

 

You are not responsible for getting CML.  Even if we are, no one can pin down how we did it.  For some, including myself, there is a certain shame in being diagnosed with an incurable chronic disease or being considered a "sick" person, especially if you were always the poster child for excellent health and habits.  And we will be sick our whole lives because a cure, if anyone can be supported enough to cure it with all the drug pushing out there, is likely far in the future.  However, the disease, as you know, in most cases can be managed well--many thanks to those who cared to try.  That is good.  And we can do all that we can to get our health back on track.  This forum is great for that! 

 

Take care, and I wish you quick healing and the ability to forgive yourself for something that is totally not your fault.  I understand because it has taken me a long time to realize this myself. 

 

Tedsey



#12 RayT

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Posted 08 October 2015 - 07:14 PM

Amcantley, I know exactly how you feel. I've had CML since Jan '14, after battling Hodgkins Disease in the early-mid '80s, which left me with no spleen and an inferior wall MI (heart attack) from the chemo.  I now have CHF, which further complicates my CML Tx and results in multiple trips to the ER, usually followed by inpatient admission for 1-2 weeks. I spent a total of 4 weeks inpatient in 2014 and have already logged an additional 8 days this year.  Anytime I get a fever of 100.0, it's an immediate trip to the hem/onc office or ER for bloodwork.  I was in hem/onc office 2 days ago for regular monthly BW and numbers came back worse than their usual poor results.(RBC=2.7, HGB=8.6, HCT=26%) After my oncologist and cardiologist have a "meeting of the mindless" I may be looking at a blood transfusion next week. Because my left heart only functions at 25 of normal, I can go from being dehydrated to human water balloon in the blink of an eye. I had over 2,000ml of fluid drained from my lungs 6 weeks ago (bilateral pleural effusions.)

 

Accepting the fact that you're sick, tired and need help is VERY frustrating, especially for a career paramedic whose current "retirement" gig is working part-time for the county Sheriff.  You have to recognize that there will be good days and bad days, making the most of your capabilities on any given day.

 

TALK TO YOUR HUSBAND!  Let him know exactly how you feel about all this.  You will probably find that he shares many of your feelings and is probably angry and frustrated that he can't do anything to help you.  Let him take care of you. We men go crazy when we can't "fix" things. I thank God every day for my wife of 29 years, a breast cancer survivor herself since 1997. She is the 1 person who will listen and help me through the times when I feel helpless, angry and/or depressed, often just holding me and reminding me that I've made it through some really bad stuff and that the current situation isn't as bad as what I've already survived. 



#13 rcase13

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Posted 08 October 2015 - 07:36 PM

I commend you on your attitude. I wish I was as strong. Your comment about going crazy when men can't fix something is so true. I have always been mister fixit around our house. It drives me nuts that I can't do near what I could prior to CML. I overheat instantly and have to sit down.

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!


#14 amcantley

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Posted 09 October 2015 - 12:06 PM

Thanks RayT. You have had quite the journey. I'm trying harder to accept where I am and give my body the time it needs. However, it is still a struggle to not feel like I'm letting people down when I'm tired. I was mildly reprimanded by my boss yesterday for even being at work since I have my second infection in a month and now my cbc shows I've gone too far in the other direction. (the joys of working with the public). She pretty much told me that I was not coming into work today. I came home and slept and really haven't done much of anything today. I let my husband take our daughter to school over the last 2 days and have said no to events. So I'm getting better.



#15 RayT

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Posted 09 October 2015 - 02:04 PM

Amcantley, sounds like your boss and my former boss are sisters. My boss (and my coworkers) "carried" me through the final year between my diagnosis and retirement. I ended up using all my vacation and over 400hrs of accumulated sick time. Many days it was lunch time or later before I showed up for work.

BTW, I never got out of bed until noon today. Waiting for wife & daughter to come home from school so we can enjoy the evening. Hang in there!

#16 ARTWOMAN

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Posted 13 October 2016 - 12:32 PM

It's an odd thing for me, this CML being real. I was diagnosed 10-29-2015. When my side effects and symptoms abate a little and I feel halfway human, I am able to focus on living more. Yet, when my side effects and symptoms are pounding me so very hard, which is often lately, then I know for sure that my leukemia is for real. I've been to the ER at least 3 times in the past month or so, twice just last week end, for the unmitigated side effects of nausea, vomiting, spleen/liver/abdominal pain, dehydration and rectal bleeding (sorry for being graphic). I am on my third type of TKI - Bosulif/bosutinib. My oncologist just lowered the dose from 200 mg to 100 mg daily. We tried to go up to 300 mg (500 mg is the usual starting dose) but the side effects really ripped me apart. I was initially on Gleevec for 4.5 months - became intolerant. Then Tasigna 1 dose - hypertensive crisis. Now, bosutinib for more than 5 months. Still having trouble eating although I take Zofran for nausea which begets constipation which begets senna laxatives which adds to the bleeding which begets more abdominal pain. Whew! What a wild ride this is. So, I try to keep some quality of life up, because I am not ready to die. But lately, I have been wondering, yes - once again - about no TKI or other treatment. This is not what I really want. I want to live, not die. It is just that living with my CML and it treatment thus far has been a living hell with poor quality of life. Yeah, my CML is all too real now. Thank you for "listening." For those with CML, the LLS Community chat room on Tuesday and Thursday nights 8-10 EST is a blessing!  Take care all and hang in there. :) 



#17 Gail's

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Posted 13 October 2016 - 11:53 PM

Art woman, I'm so sorry you're having such a rough time. When the side effects are bad, and go on & on & on, it's depressing. A friend asked me what I was looking forward to. I actually had no answer so have started working on having one thing to focus on that's good. Today it was looking forward to chatting with my son about his kitchen remodel. May sound like a little thing, but it made my day! Hope this might help you. Take care!
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

#18 r06ue1

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Posted 14 October 2016 - 05:21 AM

ARTWOMAN, have you asked about the ABL001 trial?  Maybe you qualify, not sure.  


08/2015 Initial PCR: 66.392%

12/2015 PCR: 1.573%

03/2016 PCR: 0.153%

06/2016 PCR: 0.070%

09/2016 PCR: 0.052%

12/2016 PCR: 0.036%

03/2017 PCR: 0.029%

06/2017 PCR: 0.028%

09/2017 PCR: 0.025%

12/2017 PCR: 0.018%

 

 

Taking Imatinib 400 mg


#19 tiredblood

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Posted 15 October 2016 - 09:26 PM

I know exactly how you feel, Artwoman. I've not had as serious side effects as you have, but however, have had side effects. SE usually come and go, but when they pile up on you all at one time, it's rough. And, even on 1/2 dose. Since being diagnosed in 2013, these past few months have been the first time since diagnosis that I've been scared-- mostly about what unintended adverse effects the TKI is having on my body.




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