I'm having a rough day of nausea and feeling sorry for myself. Today the treatment feels worse than how I felt with the disease before diagnosis. Will someone give me a reality check and tell me what the course is with untreated CML? I know it's fatal, but I'm asking how those last few years look like.
Worst case scenario
Started by
Gail's
, Jul 16 2015 11:13 AM
14 replies to this topic
#1
Gail's
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Posted 16 July 2015 - 11:13 AM
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
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
#2
jmoorhou
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Posted 16 July 2015 - 12:20 PM
Gail, give it a year, I've been on Gleevec for 15 months now and the only side effect I have is puffy eyes. Your doctor should have prescribed something for nausea.
I've actually lost 20 pounds (I needed to lose) and my cholesterol numbers are way down because my sense of taste is not that good...I just don't binge eat like I used to...now I binge on Netflix...the first year is the worst!!
There are good things about Gleevec.....try not to google side effects because like a lot of other drugs...Novartis is "covering their ass" by listing every possible side effect anyone could have...
Diagnosed 3/2014 WBC 28 Non detectable within 3 monthsGleevec 400 mg 5/2014 one hour after dinner really improves nausea300 mg 12/15/2016200 mg and 300 mg Gleevec 2/25/2017 (after 3 years on Gleevec) For last four months taking 300 mg per day. Last CMC showed liver enzymes elevated, went to a good Naturopath and he recommended 4 Tumeric, 10,000 mg Vitamen D, and 3 milk thistle (silymarin) daily. Also use One<p>Day Detox Dandeloin tea, and Nettle Tea and a slice of ginger every day...in two months liver tests were below normal.Janis
#3
dede5
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Posted 16 July 2015 - 12:26 PM
Gail, I'm so sorry you're having a tough time right now. I won't say I know how you feel, because we all have our own journey, but I can say I have those, too, off and on. I'll have to leave the medical info to someone else, but I can offer you my support and prayers that this will soon pass. *Hugs*
Dx: 01 March 2011
Sprycel 100 mg per day since dx
MMR: July 2013
numerous side effects
Thankful for the gift of each new day, and try to live it to the fullest 
#4
Antilogical
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Posted 16 July 2015 - 02:02 PM
Trey made a response in the thread titled "Husband has quit treatment" that contains the information you seek.
http://community.lls...quit-treatment/
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.
#5
JPD
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Posted 16 July 2015 - 03:04 PM
Death due to CML is hellish. No amount of side fx can match the hell you will go through in the final stages. Not to mention the pain your loved ones will have to endure watching you go through this. If your meds are too terrible to handle, tell your Onc and try something else.
Antilogical is right - look at what Trey wrote and then think long and hard about it. We can LIVE through our disease. So do so. It aint easy, but its easier than pancreatic or liver cancer. And, IMO, we owe it to those people that cant survive cancer to do just that... survive and LIVE. Its hard. Its depressing. But it's our obligation if you ask me.
January 15: .53%
April 15: .78%
July 15: 1.1% - upped dosage to 400mg after this test
Oct 15: .85%
December 15: .28%
March 16: .29%
July 16: .34%
October 16: .11%
January 17: .081%
April 17: .055%
July 17: .135%
Oct 17: .008%
#6
Buzzm1
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Posted 16 July 2015 - 04:02 PM
Hi Gail,
Sorry to hear that you are continuing to have problems with nausea. Have you tried splitting your 400mg dosage as Trey has mentioned numerous times to others who have experienced difficulties with their medication? As mentioned, this is more easily accomplished with the 100mg pills. Also, it seems that most have better success taking their med in the evening after dinner (usually a heavier meal) and sleeping through some of the side-effects.
When I was experiencing the Gleevec nausea phase, I developed a habit of laying down and sleeping for an hour, or so; it helped, and as I mentioned before, taking my Gleevec an hour after dinner, which I still do, works best for me.
Buzz
For the benefit of yourself and others please add your CML history into your Signature
02/2010 Gleevec 400mg
2011 Two weakly positives, PCRU, weakly positive
2012 PCRU, PCRU, PCRU, PCRU
2013 PCRU, PCRU, PCRU, weakly positive
2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)
2015 300, 250, 200, 150
2016 100, 50/100, 100, 10/17 TFR
2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000
2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17
At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.
In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.
longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation. GFR and creatinine vastly improved after stopping Gleevec.
Cumulative Gleevec dosage estimated at 830 grams
Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.
Trey's CML Blog - Stopping - The Odds - Stop Studies - Discussion Forum Cessation Study
Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt
#7
Gail's
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Posted 16 July 2015 - 04:43 PM
Thanks for the support. I have no intention of stopping treatment, but as I said, sometimes need a jolting reality check to remember why. I'm on my 3rd nausea med, now taking zofran with my gleevec to try to be able to get a good sleep when it hits. Tried using it every night but am finding I need to skip a night here and there to keep from getting constipated. None of the nausea meds allow me to stay alert, so I just take them at night. I've always had a sensitive stomach. Guess I'm just blessed.
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
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
#8
kat73
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Posted 16 July 2015 - 05:39 PM
Gail's, forgive me if I don't know your history accurately, but I know I felt worlds better when I switched from Gleevec to Sprycel. Is that a possibility for you to try? Or another one? I'm always amazed at the wide range of reactions we all have to the same meds. I never actually felt "good" while on Gleevec, and even though I discovered early on the trick of taking it with PLENTY of food, I never knew when I suddenly would feel nauseated and, sometimes extremely inconveniently, actually throw up. I lived like this (fatigued, depressed, vaguely sick - like morning sickness without being happy) for 2 years. I didn't have even one single good day. When I was switched to Sprycel it all melted away like a toxic fog. The relief was unbelievable. I'm not saying, of course, that Sprycel would do this for you, but a change of TKI's to one of the others really ought to be tried. You just shouldn't have to live like that.
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.
#9
Gail's
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Posted 16 July 2015 - 06:40 PM
Kat73, I'm 6 months into treatment and on gleevec 400 mg. my onc isn't open to reducing dose so soon and I'm trying to ride out the side effects and stay on gleevec in hopes I'll get past this. It's a cost issue for me as I am soon to retire. I thought I'd try a year, and if no relief of nausea, fatigue and occasional muscle pain, I'll ask to switch. In theory, that's what I'll do, but as you can tell, I'm losing resolve. No plan to not treat but just want to feel better. Get a predictable life. This puking is getting the best of me. I called the onc pharmacy to see if they know of anything else that will help. Not heard back yet.
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
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
#10
Trey
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Posted 16 July 2015 - 07:37 PM
Do you split dosage? If not, taking 200mg morning and 200mg in the evening might help.
#11
CallMeLucky
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Posted 16 July 2015 - 09:57 PM
Quality of life is just as important as surviving. You shouldn't suffer, there are other options, try a different drug like Sprycel or Tasigna and see how you do.
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%
#12
gerry
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Posted 16 July 2015 - 11:31 PM
Hi Gail,
Fatigue is possibly going to be an issue with most TKIs, if you can get past the nausea would that be the biggest help?
#13
Gail's
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Posted 18 July 2015 - 12:43 AM
Gerry, most definitely I could deal with the fatigue better without the nausea. The pharmacist ordered reglan, anti nausea med #4 for me. We'll see how it works.
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
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
#14
gerry
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Posted 19 July 2015 - 08:35 PM
Hi Gail,
I'll keep my fingers crossed for you. I was on Maxalon for nausea, though it does make you a bit tired.
#15
lguecho
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Posted 19 July 2015 - 10:55 PM
My husband was recently diagnosed with CML. He is 67 yrs. The doctor had him on HYDROXYUREA 500 mg. capsules twice a day. His WBC went even higher. He is now on Sprycel. I don't see a lot of side affects except a lot of depression and weakness. Tomorrow we will know if it is working for him. He lost weight even before he found out he has CML. He is able to eat. Mostly small portions. I think the depression is worse. Just knowing he has this CML took a toll on him. I try to stay positive but at times he is very quiet. I was a care provider many years but when it comes to family its not as easy. Tomorrow I will post on his WBC. Then we will know how the Sprycel is working. Prayers to all of you on this site.
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