Still no tki and no meds here is husbands latest blood work how bad is it?
Posted 02 November 2015 - 11:57 AM
Posted 02 November 2015 - 08:35 PM
You have previously said he has the T315i mutation which means he will only respond to the drug Iclusig. But he has stopped taking it.
His lab tests shows the CML has definitely gained control, but it is not nearly as bad as it will get. His white blood count is only about 55 (normal is about 7), so it will go much higher into the 500 range or higher. His other white blood cells are showing signs of advancing CML. The CD34+ cells are blasts (poorly functioning immature white blood cells), and they are becoming a little elevated (there should be none in the blood).
Over all he is not near the end yet. Things will get a lot worse for him, probably in about 6 months. So although he has deteriorated quite a bit, but there will be a lot more ahead. He probably is not suffering much now, but that will soon change. Or if he THINKS he is suffering a lot now, he will soon learn what real suffering is like.
Overall, suicide by CML is dumb and selfish, and it also has a lot of suffering associated with it. He is just about to enter the real suffering zone. In the coming months he begin to lose immunity to many illnesses and infections he formerly could shake off. He will be constantly ill. His organs will starve for oxygen as his blood becomes thick with leukemic blood cells which do not function well. And he will most likely die from pneumonia or some other virus or infection.
This is just as factual as I can present it. Not overstating the suffering that is coming for him. This will seem to take a very long time, even though he likely won't last 12 months.
Posted 02 November 2015 - 08:44 PM
Posted 03 November 2015 - 08:10 AM
I just wanted to say I feel so, so sorry for you, having to go through this. Your husband is stupid and selfish.
Posted 03 November 2015 - 10:28 AM
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
Posted 03 November 2015 - 08:18 PM
Diagnosed June 2014. WBC 34.6 and Platelets 710 at diagnosis. Bone Marrow Biopsy pre-op diagnosis: Leukocytosis. Post-op diagnosis: the same, Leukocytosis. No increase in blasts <1%. Quantitative BCR/ABL testing and formal chromosome analyses confirmed CML diagnosis.<p>Supplemental Report: Abnormal BCR/ABL1 FISH result t(9;22). Molecular test for BCR/ABL1 fusion transcript by RT-PCR positive for BCR/ABL1 transcripts, b3a2 at 133.561% and b2a2 at 0.001% and ela2 at 0.001%. Followup monitoring showed negative for ela2. BCRABL1 was 148.007 at diagnosis. Started Sprycel 100 mgm and blood work was normal at 3 weeks. MMR at 3 months: 10/4/14 was 0.106. Stayed in that range with one dip to 0.04 once and back to 0.1 range. Oct. 2015, BCRABL1 was not detected, following with 0.0126, 0.0092, <0.0069, 0.0000, <0.0069, 0.0000. Now on 70 mgm of Sprycel. Continuation of PCR test results: 07/07/2017, 0.0000%, now on 50 mgm of Sprycel, PCR 9/12/17 0.0074%, PCR 11/3/17 0.0000%, PCR 1/17/2018 0.0000%
Posted 03 November 2015 - 09:46 PM
Tlb, I haven't been posting on here for long, so I'm not familiar with your husband's health history. I've seen several male patients get angry when they are diagnosed with a serious health condition. Sounds like he could use a support group or other guys with the diagnosis to talk to. If only that were possible, right?
With my own diagnosis, I've had the thought of what if a cure was right around the corner, when thinking I could not or would not want to take a TKI for the rest of my life. We had a friend die from Hepatitis C a few years back and now, there are drugs that IIUC, cure hepatitis C. So, that meant back when our friend died, there was a cure right around the corner.
Sorry, you're having to go through this. Sounds like your hubby could have depression.
Posted 04 November 2015 - 08:01 AM
Posted 04 November 2015 - 10:26 AM
I am so stunned, I couldn't answer right away. I remember your earlier posts about your husband, but I assumed he had come around to sense. From Trey's analysis, it does not appear that your husband is unsalvageable at this point, but will be within a year. If he took his Iclusig, even now, it's quite possible he could live a normal life of normal length. Does he know this? Do you? Have his doctors contacted you both personally? Have you questioned and researched CML? I am being very presumptuous and I apologize. It's just that I can't believe that you both have given up. If he took the Iclusig he probably would come all the way back to the land of the living and stay there for a regular lifetime - DO YOU GET THIS????!!!?? I'm taking a chance here of doing more harm than good, and bringing great criticism down on my head, so I apologize in advance if I have made you unhappier when you quite clearly need understanding and comfort.
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.
Posted 04 November 2015 - 02:52 PM
I've thought about you over the months and wondered how your husband was doing. I'm sorry to read that he has persisted in his decision to end his life this way.
This has to be a terrible situation for you and your children and I continue to believe he is not able to think clearly or he would not be doing this to his family.
My deepest sympathies to you all for the sorrow you must be feeling.
P.S. Although I am not religious, as the mother of a recovering addict, I rely on the Serenity Prayer to bring sanity back into my life when I need it.
God grant me the serenity
To accept the things I cannot change;
Courage to change the things I can;
And wisdom to know the difference.
I hope you find peace in your waiting.
"You can't change the direction of the wind but you can adjust your sails."
DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>
Posted 04 November 2015 - 08:49 PM
Can you hide the medicine in his food somehow? This is awful... Make applesauce or a smoothie or something and grind it in to hide it. Tell him its a antibiotic, anything.. I am so sorry... Sending prayers he turns to the medicine to help him...
Its never to late to live happily ever after/ Do not squander time; for that's the stuff life is made of
Posted 05 November 2015 - 09:12 PM
Posted 05 November 2015 - 09:48 PM
I have tried to make him understand what will happen. That's why I asked what will happen previously. He does not have any iclusig anymore he called biologics that delivered it to him and cancelled the prescription. He refuses to see an oncologist and only sees his quack primary doctor. Who seems to think he made the right decision. I am no longer included in medical decisions he makes. He knows what he's doing and doesn't care. Not what I expected out of the man ive been married to for 16 years.
As a patient he certainly has the right to choose not to pursue treatment, but as someone in the healthcare field, I say he also has the right to informed consent-- which, IMO, being informed of all treatment options available *and* all consequences of not participating in treatment. Otherwise, the healthcare system has not provided full informed consent on which he can make an informed decision about his healthcare.
Posted 06 November 2015 - 09:10 AM
Wow.. I am so sorry. I have played with my dose of Tasigna, getting down to 20% of recomended dose. I did become detectable again and took a larger dose for a few months. But I have to admit that I take my meds for my family. I do kinda understand your husband beind down about the sub par quality of life. I wish myself or anyone else on here had the answers. The only advice that I can give you from my first hand experience is for you to be very persistant to have God in your family. I hadnt been to church in probably 20 years and a friend got me back in. I always thought of myself as a nice person before, but I am a much better person now. I will continue to pray for everyone involved.
Diagnosed in September 2011. Tried one year of Sprycel. Had great response. Became undetectable in a few months. Changed to Tasigna hoping for less side effects. Self medicated myself down to 20% dose and held for 3 years before becoming detectable again. It has been a journey that has helped me realize what life is about! I am all about a balanced life. I firmly agree with my decision to lower my dose. What is life if you aren't living? Mine will never be the way it was, but it is going to be as good as I can make it! Drs PRACTICE medicine, we can guide our dr to help us with a better life! Don't settle until it's acceptable to you!
Posted 06 November 2015 - 11:10 AM
CyCR - Aug 2014, Positive for 1 chromosome Sep 2015. PCR: 12.77 in Oct, 2012 to 0.04 (MDA) in Mar, 2016. 4/2016 - 0.126 (Local lab (IS); 05/2016 - 0.195 (local); 6/2016 - 0.07 (MDA); 7/2016 - 0.03 (local) 9/13/2016 - 0.16 (MDA); 9/26/2016 - 0.31 (MDA); 11/2016 - 0.012 (local); 01/2017 - 0.24 (MDA); 04/2017 - 0.09 (MDA); Cytogenetics show der(1:7)(q10;p10)7 chromosome mutation. Repeat of Sep 2015. PCR - 6/2017- 0.035 (local); 10/2017- 0.02 (MDA)
Posted 13 November 2015 - 01:34 PM
I am so sorry and like most people I think he is seffish! However on the other hand I can understand because I am now on a half dose of Tasigna and I'm about to go for a pain iv. Some days I want not be on a TKI. I have Cerebral Palsy.
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