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Questions to ask @ upcoming appointment


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#1 tiredblood

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Posted 18 October 2017 - 07:26 PM

Thinking about asking about when the doc would consider a TFR trial, although I'm not optimistic with my WBC count remaining a little elevated. Of course, I reached 0.000% within 4 months. Been on TKI since 12/2013.

I've had an optimal response with Gleevec 200mg/day . Should I ask to reduce dose even further, or remain content?

#2 gerry

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Posted 20 October 2017 - 05:07 AM

If you've had 2 years of 0.00, you should consider trying TFR if your doctor is okay with the idea. Does the doc think your WBC is related to your CML?



#3 tiredblood

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Posted 20 October 2017 - 09:46 PM

At 22 months on Tasigna is when I went off the TKI to see if I lost response in order to have my first and only BMB to confirm diagnosis and rule out other Dx. Unfortunately, I did loose response and had the BMB. CML was confirmed. Restarted TKI with great response. That is one reason I'm not optimistic about achieving a TFR.

I think the hem/Onc does not believe the wbc count is related to the CML. Hem/Onc has checked for several things. I think now he is attributing it to inflammation. He checked me for multiple myeloma, but didn't tell me up front. I supposed so as not to alarm me. I just happened to ask the lab tech what the doc ordered that day, and she wrote it down for me. It took me by surprise but I'm happy to know it was negative. He has really done a lot to try and figure it out including sending me to a rheumatologist and I've been compliant with the rheum. Treatment. So, anyway, I'm not sure what to think. I'll be asking at my next visit. I'll get labs on Monday in prep for my 11/1 hem/Onc appointment.

I'm tired of CML, TKIs, SEs, and going to the doctor. I do like my hem/Onc. You can tell he loves what he does and cares about his patients. His notes are well written and he is great at systematically examining patients. He'd make a great detective if he weren't a doctor.

#4 gerry

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Posted 21 October 2017 - 12:57 AM

If I work out your dates you had a go at TFR around Oct 2015. So you are possibly a couple of months shy of the latest 2 years negative? The percentage of people achieving TFR the second time round is less than the 40+%, but some have achieved it according to the info. You could try again, but as you know you have to be prepared for it not to work.
If you find you don't want to go through it, then the least amount of TKI would be the best option. :-)

#5 tiredblood

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Posted 21 October 2017 - 09:29 PM

Yes, 10/2015 is correct.  I pulled out my office visit note to be sure, as I've had brain fog lately.  I may ask his opinion on cutting my Gleevec 200mg/day dose to 100mg/day.

 

If ABL001 tests to be promising in combo with current TKIs, does anyone have any idea how long it would be before it was approved for and Rx'd for those of us who are PCRU on our current TKIs?  Or any idea how long one would have to stay on the ABL001/current TKI combo?  I know it would all be speculation.



#6 tiredblood

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Posted 01 November 2017 - 08:35 PM

Trying a dose reduction to 100mg/day. So, when my Rx order comes Friday, I will have a 6 month supply (just reorderd earlier this week). Praying to have reduced SEs and maintain deep molecular response. Retest in January, except I think he meant Feb.

#7 Buzzm1

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Posted 01 November 2017 - 10:55 PM

Trying a dose reduction to 100mg/day. So, when my Rx order comes Friday, I will have a 6 month supply (just reorderd earlier this week). Praying to have reduced SEs and maintain deep molecular response. Retest in January, except I think he meant Feb.

tb, I don't remember your history; how long have you been PCRU on Gleevec 200mg?

 

How long will you stay at 100mg before going to 100mg every other day?


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 BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt


#8 kat73

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Posted 02 November 2017 - 10:30 AM

And I'd like to add to Buzz's questions - As I read your posts, I wondered just how high is your WBC?


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 tiredblood

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Posted 03 November 2017 - 09:28 PM

Anywhere from just over the high side of normal 11,??? To just over 17,000-ish. I'd have to pull out the results for exact numbers. Neutrophils have been hovering just above the norm too.
Cancer - PCRU/ no other known cancer, no infection, only thing left is inflammation.

#10 thatguy

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Posted 03 November 2017 - 11:27 PM

Don't know if it's been done, or worth doing, but I'd want a whole body PET or MRI.
3/25/2015- Dx'ed by FISH : 85% of cells dual-fusion signals, 7% with tri-fusion signals, WBC 212,000. Started Gleevec 400mg.... Calculated .93 SOKAL

08/17/2015- 14.793 % I.S P210 (quest)
10/15/2015- 3.313 % I.S (quest)
12/23/2015- 1.891 % I.S (quest)
1/07/2016- Tasigna 300mg 2x daily
1/14/2016- 4.414 % I.S P210- City Of Hope lab, mutation negative.
1/26/2016- 1.589 % I.S (quest)
2/22/2016- 1.719 % I.S (quest)
2/29/2016- 1.133 % I.S (quest)
3/03/2016- Tasigna 400mg 2x daily.
3/29/2016- 0.663 % I.S (quest)
4/27/2016- 0.781 % I.S (quest)
5/04/2016- 0.652 % I.S.(quest)
5/24/2016- 0.501 % I.S (quest)
6/28/2016-0.534 % I.S (quest)
7/15/2016-0.881 % I.S (quest)
7/22/2016- Bosulif 500mg
7/28/2016- t315i test- Negative
8/22/2016-0.432 % I.S (quest )
11/15/2016-0.325 % I.S (quest)
2/1/2017- .0445% i.s (genoptix)
5/6/2017- .0968% i.s (genoptix)
5/12/2017- .12 % i.s (quest).
6/4/2017- .083% i.s (quest)
6/11/2017- .0295% i.s (genoptix)
8/5/2017- .0501% i.s (genoptix)
11/6/2017- .0270% i.s (genoptix)

#11 tiredblood

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Posted 04 November 2017 - 11:09 PM

I've been working on my sig line, CML/TKI timeline.  I haven't finished it yet, so the following may not be totally accurate.  Don't shoot if I made an error. :P  It would have been easier if I had done the timeline as time passed.  I'll put it in a sig line when I'm sure I have it accurately recorded.

 

I think the hem/onc ruled out PV and somewhere in there he checked for MM, and Cushing's. I've had a rheumatology workup (do have some inflammation), had CT chest, MRI cervical and thoracic spine. As an aside, I did recently donate blood to a genomic health initiative that checks for 59 actionable genes and  IIUC, by having CML, whole genome sequencing will be done. Hopefully that will help someone else down the road.

 

No discussion for even further reduction, Buzzm1.  Doc didn't seem optimistic for me achieving/maintaining a TFR, and honestly, I'm not that optimistic about it either.

 

 

11/2013 Dx by single peripheral blood PCR, p210 transcript 123.210% IS, +JAK2 V617F 0.1% allelic ratio

12/2013 Began Tasigna┬ę 300mg twice daily

2014  (3/2014) 0.000%, 0.000%, 0.000%, 0.000%

2015  0.000%, 0.000%, 0.000%, 0.000%

10/2015 D/C'd Tasigna, will have BMB if/when loss of response to confirm dx, TKI withdrawal syndrome ~beg. within several days of D/C

1/4/2016 molecular relapse, PCR 0.065%

1/7/2016 BMB BCR/ABL:ABL ratio 0.575%, normal female karotype, +JAK2V617F low allelic ratio, FISH neg. for BCR-ABL1 gene fusion, neg. for calreticulin mutation, mild myelofibrosis

1/7/2016 Began Tasigna 150mg twice daily

2/3/2016 0.200%

4/4/2016 0.000%

2016 see above,  0.000%, 0.000%

11/2016 D/C Tasigna, start Gleevec 200mg daily

12/2016 0.000%

2017 0.000%, 0.000%, 0.000%, 0.000%

11/17 Reduced Gleevec to 100 mg daily






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