Jump to content


Photo

Advice on Sprycel dosage for CML newbie


  • Please log in to reply
43 replies to this topic

#21 kat73

kat73

    Advanced Member

  • Members
  • PipPipPip
  • 884 posts
  • LocationWashington, DC area

Posted 03 November 2017 - 12:55 PM

P.S. to my post above - I looked back at my platelets counts and, to summarize for you:  They dropped dramatically in the first few weeks of Gleevec 400, always coming back up with a drug break, then continuing to be lower than anybody'd like for many months (62-119, for instance).  Eventually I settled out around 130 and everybody was happy.  When I switched to Sprycel (after 2 years on Gleevec) the same thing happened, only over the years I've come up to 155.  Even so, there's the occasional dip, as low as 84, 92.  I take care to notice, but I do not get freaked out anymore.  Please read Trey's CML blog, particularly the section on Low Blood Counts.  He talks about how the spleen sequesters platelets, they don't always show up in peripheral blood, etc.

 

Scuba is right, the CBC is an important source of information as you begin.  But you don't want to switch so quickly to another drug just because you have low platelets after only a short time on a particular TKI.  For one thing, they ALL are myelosuppressive - my platelets actually got lower on Gleevec than they did on Sprycel.  (Platelets aren't technically part of the 'myelosuppressive' umbrella, but for our terms we throw them in.) 


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.


#22 LouiseS

LouiseS

    Member

  • Members
  • PipPip
  • 24 posts
  • LocationCA

Posted 03 November 2017 - 01:32 PM

To follow up on our doctor's visit, the doctor was very happy with his progress and doesn't want to see him again or do more testing till Christmas or New Years when they will test BCR/ABL percentage ,which he is confident will have gone down. I was a bit thrown about waiting so long between tests just a month into taking Sprycel so he did say we can have a blood test in between if we wanted. He told us to look out for rash of little red spots or bleeding as a sign platelets get too low.

I asked about his views on lowering dosage at some point and his view is that you stay on 100 mg for as long as your body can handle it and forever. I found that a bit depressing given what I am hearing about long term side effects and how effective lower doses can be . He has only reduced patients on Sprycel when they have fought for it to be reduced. So I think after the three month appointment we will seek a second opinion because even though my husband is tolerating Sprycel at 100 mg right now there is no guarantee this will always be the case , and it makes sense anyway to be on a lower dose if that is equally effective.

Riggered I believe if you find a doctor you wish to see instead, you simply ask your doctor's office for a referral and ask for them to send over your records. I believe it is very common to seek this out and so you shouldn't worry about causing offense. Your health is far more important.

#23 ROMO

ROMO

    Advanced Member

  • Members
  • PipPipPip
  • 76 posts

Posted 03 November 2017 - 03:27 PM

During my trip with Sprycel and low platelet counts my Onc was not too worried
but I was as they were continuing to go lower evey blood test.
Started in the 350k range and went down to the 100k range.
So I did my own research and came across some studies that suggested Papaya 
Leaf Extract is accepted therapy for low platelets counts for people with
Dengue fever. This is accepted medicine in the third world. I tried it and my
platelet count stabilized, I'm not saying this will work, I'm just saying it seemed
to work for me. I get it at Amazon. It cost about $70. for 16oz.
An oz a day added to a water drink. Stored in the refrigerator.
A bottle last about a month. give or take.
My platelets are now in the 150k range and stable.
For what it's worth.
 
Romo

DX August 2016. WBC ~160K
PH+ Cells 36%
No Spleen enlargement
No Symptoms. Other counts ~Normal
BCR-ABL p210 (Detected)
BCR-ABL p190 (Not Detected)
 
Sprycel 100mg.
PCR   02/01/2017    0.146 IS
PCR   08/07/2017    0.022 IS
Next PCR:           12/XX/2017
 

#24 Riggered

Riggered

    Member

  • Members
  • PipPip
  • 19 posts

Posted 05 November 2017 - 02:05 PM

Just to say thanks to everyone for your experience and support . This forum is an incredible source of information and support. I've soaked in your responses for a couple of days and feel grounded based on all you've given. 

 

I'm going to talk to a different local onc, one that has been mentioned in a monthly support meeting I go to. He is known for being a good listener and collaborator and he is part of the UCLA system, so access to bigger guns is possible if needed. I don't think there's anything terribly unique anout my case, I just want to work with someone who is a bit more thoughtful and consistent. I'll be starting the payaya leaf extract on Tuesday and expect to have my PCR results mid week. New 50mg Sprycel script arrives on Tuesday. 

 

Many thanks! 


Aug   1 -2017      DX as a result of annual physical. I had been feeling tired and out of breath, WBC 130, 

                            Baseline PCR 100 IS

Aug   4                Start Dasatinib 100mg daily

Aug 30                Stop drug due to Myelosuppression, CBC counts too low

Sep   8                Resume drug. (Onc prescribed 100mg every other day even though 50mg was the new desired                   

                           dose, this tactic because I had coincidentally just received 30 tabs of 100mg.) This every other day regime                             continued through Nov 8.

Nov   3                PCR 35.96 IS

Nov   7                New Oncologist

Nov   9                Start taking Dasatinib 50mg daily

Nov  25               Bump up dose to 70mg daily 

Nov  30               PCR 14.79 IS

Jan    4-2018       PCR   2.65  IS

 


#25 Riggered

Riggered

    Member

  • Members
  • PipPip
  • 19 posts

Posted 14 November 2017 - 12:27 AM

Hey all.....

 

Have a consultation with a new Onc Last Tuesday Nov, 7. Very smart, attentive and appears to be humble too. Have decided to go with him. Going to switch records etc. before this Thursday, Nov. 15 when I have first appointment. He commented on my initial PCR and BMB saying blasts were quite low and he felt good results and a long life could be achieved. Nice to hear. 

 

I've been on 50mg Sprycel daily since last Thursday, Nov. 9. 

 

Meanwhile I had a call from orginal Onc this evening, Nov 13, telling me my 3 month PCR results came in today.  

PCR is at 35%, down from 100% at DX. (maybe the result of 60 days of alternate 100 mg day dosing? not sure, but gotta move on)

 

She suggested two alternatives:

1. Stay on sprycel and watch platelet count. 

2. Switch to Nilotinib. 

 

She said she wants to do another PCR on Nov. 30 to make sure we are headed in the right direction with Sprycel. 

 

Any thoughts??

 

......I was hoping for a lower PCR, but it is what it is.   

 

Staying on 50 mg. Sprycel as I transition to new onc. I tolerate Sprycel pretty well, especially at 50mg, so I hope to stay on it as

as long as its effective. 

 

Misc:

 

I've been taking papaya leaf extract since Nov 7. Maybe this will help with the platelets. will see on Thursday when I get CBC. 

and Oh Boy...it really helps with digestion. All machinery moving..

 

btw, Stopped Multi Vitamin and now taking B complex, this on advice of accupuncturist. 

She wwants to help up the RBC count.   

 

Grateful....

 

Riggered


Aug   1 -2017      DX as a result of annual physical. I had been feeling tired and out of breath, WBC 130, 

                            Baseline PCR 100 IS

Aug   4                Start Dasatinib 100mg daily

Aug 30                Stop drug due to Myelosuppression, CBC counts too low

Sep   8                Resume drug. (Onc prescribed 100mg every other day even though 50mg was the new desired                   

                           dose, this tactic because I had coincidentally just received 30 tabs of 100mg.) This every other day regime                             continued through Nov 8.

Nov   3                PCR 35.96 IS

Nov   7                New Oncologist

Nov   9                Start taking Dasatinib 50mg daily

Nov  25               Bump up dose to 70mg daily 

Nov  30               PCR 14.79 IS

Jan    4-2018       PCR   2.65  IS

 


#26 scuba

scuba

    Advanced Member

  • Members
  • PipPipPip
  • 1,044 posts
  • LocationHouston, Texas

Posted 14 November 2017 - 09:32 AM

What is your current FISH level? 


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"


#27 rct

rct

    Advanced Member

  • Members
  • PipPipPip
  • 77 posts

Posted 14 November 2017 - 09:47 AM

I'll add some experience with Mrs, since 2006.

 

She has never had "normal" ANC, particularly ANC -> WBC ratio, which is typically 50%, so a white of 3000(not bad for a leukemic) should have an ANC of 1500.  Mrs has not been above 700 ANC for...ten years now.  We've had months of sub 100 ANC with a 2600 WBC.

 

This was considered traumatic at first, lots of stuff was done to try to counter her low counts, Gleevec breaks, Neulasta monthly, and Neuopgen as needed, etc.  Each Gleevec break time her PCR would rise fairly quickly from undetected, so breaks weren't all that helpful.  Neulasta is awful, Neupogen is not much less awful and is actually not indicated for leukemics.  It would help her counts for sure, but the physical cost was just too high.

 

2010 we combined one of our trips across the country with a stop in Portland OR to see Druker. His opinion was that she was of that small number of people that just don't fit what is "normal", and that the numbers used to indicate "normal" on a blood panel have absolutely no basis in medical fact.

 

Further work with some docs outside Philly ended up confirming those ideas, that we use these numbers as a starting point, not as a concrete reference.

 

So we are in 2017, she has never had decent ANC ever, has not gotten sick as a result, and we just muddle through knowing she is one of the oddballs that is not ever going to have "normal" numbers without a detectable PCR.

 

She has been off Gleevec since September and this Thursday we meet with onc to either stay off TKI longer or start on Sprycel at low dose and work up.  11 years of Gleevec has been enough for her, it is time to try something different.

 

The bottom line is that no matter what her ANC does, we will be happy if she can maintain a decent PCR without the constant sickness that Gleevec brings, and we are hopeful that will happen, even if she is just super low PCR without PCRu.

 

Druker made it clear to us, followed by the three oncs we've had since, to not let her counts lead the way, to let PCR lead the way and what works to keep that as low as possible is what we need to do provided she is not in need of massive transfusions or anything.  The reason for her continued low counts has been checked and re-checked and studied and they can't come up with anything.  Our current onc is fine with an ANC of 200, so we are too, since there isn't much we can do about it.

 

None of which is the same as low platelets, we get that.  But it is an indicator that sometimes we have numbers we use because we don't have anything else to use, but not everybody fits those numbers.

 

Good luck with it and hang in there.  PCR is what matters, the rest can have stuff done about it.

 

rct



#28 kat73

kat73

    Advanced Member

  • Members
  • PipPipPip
  • 884 posts
  • LocationWashington, DC area

Posted 14 November 2017 - 02:58 PM

WELL SAID, rct.  Riggered - heed this, and stay the (Sprycel 50) course a little longer.  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.


#29 Riggered

Riggered

    Member

  • Members
  • PipPip
  • 19 posts

Posted 15 November 2017 - 12:17 AM

Scuba - sorry to say No FISH test since initial one at DX.

RCT - Thanks for jumping in with valuable info. I hear the "lead with PCR" message. Will do 

Kat - Ditto. 

 

Seeing new onc in two days. 

 

Hanging in and on.....Riggers never let go!


Aug   1 -2017      DX as a result of annual physical. I had been feeling tired and out of breath, WBC 130, 

                            Baseline PCR 100 IS

Aug   4                Start Dasatinib 100mg daily

Aug 30                Stop drug due to Myelosuppression, CBC counts too low

Sep   8                Resume drug. (Onc prescribed 100mg every other day even though 50mg was the new desired                   

                           dose, this tactic because I had coincidentally just received 30 tabs of 100mg.) This every other day regime                             continued through Nov 8.

Nov   3                PCR 35.96 IS

Nov   7                New Oncologist

Nov   9                Start taking Dasatinib 50mg daily

Nov  25               Bump up dose to 70mg daily 

Nov  30               PCR 14.79 IS

Jan    4-2018       PCR   2.65  IS

 


#30 rct

rct

    Advanced Member

  • Members
  • PipPipPip
  • 77 posts

Posted 16 November 2017 - 08:49 AM

Like...a shipyard Rigger?  That was a tough bunch!

 

rct



#31 Riggered

Riggered

    Member

  • Members
  • PipPip
  • 19 posts

Posted 16 November 2017 - 11:34 PM

rct........Entertainment rigging as a profession, sailing as a passion. slightly different crowd than the shipyard guys, but rigging is rigging...

 

Went to the new onc today and we made a new plan.

 

I've been on the 50mg Sprycel daily for a week now, 

3 month PCR from Monday = 35%. Today WBC is 3.71, PLT 94 

 

Were going to add 20mg pills on daily basis when they come in 4 or 5 days, so I'll be at 70mg for as long as CBC counts hold. We are hoping to make up some lost ground and get a deeper molecular response ASAP. Big relief to feel my onc is paying close attention and working with me. Next appointment Nov 30 for another CBC and PCR. 

 

All hail the gods of PCR (U)  

 

riggered 


Aug   1 -2017      DX as a result of annual physical. I had been feeling tired and out of breath, WBC 130, 

                            Baseline PCR 100 IS

Aug   4                Start Dasatinib 100mg daily

Aug 30                Stop drug due to Myelosuppression, CBC counts too low

Sep   8                Resume drug. (Onc prescribed 100mg every other day even though 50mg was the new desired                   

                           dose, this tactic because I had coincidentally just received 30 tabs of 100mg.) This every other day regime                             continued through Nov 8.

Nov   3                PCR 35.96 IS

Nov   7                New Oncologist

Nov   9                Start taking Dasatinib 50mg daily

Nov  25               Bump up dose to 70mg daily 

Nov  30               PCR 14.79 IS

Jan    4-2018       PCR   2.65  IS

 


#32 kat73

kat73

    Advanced Member

  • Members
  • PipPipPip
  • 884 posts
  • LocationWashington, DC area

Posted 17 November 2017 - 11:00 AM

Sounds like a good plan.  Have you rigged shows for rock bands, festivals, that such?  My son's in a band - you can PM me for the name (if you care, which of course, you shouldn't! :))


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.


#33 Riggered

Riggered

    Member

  • Members
  • PipPip
  • 19 posts

Posted 11 December 2017 - 09:57 PM

Hi all...

 

Its been a week of real hell fire (Thomas fire in Ventura, CA). We were evacuated from our house last Monday and have been bouncing around since then dodging smoke and more fire. Fire dept. miraculously save our house, but we can't move back in because the surrounding air is Bad. 

 

The good news came today:

 

My PCR on 11-2-17 PCR was 35% 

My PCR on 12-1-17 is down to 14%

 

This in response to daily dose of 70mg Sprycel. My onc is very pleased with this development and I am thrilled to be headed in the right direction. btw, I'll get organized and summarize my info as part of my signature soon.

 

Gotta run, but wanted to share this.

 

Riggered 


Aug   1 -2017      DX as a result of annual physical. I had been feeling tired and out of breath, WBC 130, 

                            Baseline PCR 100 IS

Aug   4                Start Dasatinib 100mg daily

Aug 30                Stop drug due to Myelosuppression, CBC counts too low

Sep   8                Resume drug. (Onc prescribed 100mg every other day even though 50mg was the new desired                   

                           dose, this tactic because I had coincidentally just received 30 tabs of 100mg.) This every other day regime                             continued through Nov 8.

Nov   3                PCR 35.96 IS

Nov   7                New Oncologist

Nov   9                Start taking Dasatinib 50mg daily

Nov  25               Bump up dose to 70mg daily 

Nov  30               PCR 14.79 IS

Jan    4-2018       PCR   2.65  IS

 


#34 kat73

kat73

    Advanced Member

  • Members
  • PipPipPip
  • 884 posts
  • LocationWashington, DC area

Posted 12 December 2017 - 10:39 AM

Riggered - I think on all fronts you are getting in the groove.  How are the platelets on 70 mg Sprycel?

 

So sorry to read every day about the fires!  Glad your house made it through intact.  But what a mess ahead of you.  Our experience with our vacation house in SC that got hit by BOTH Hurricane Matthew and Irma isn't nearly as bad as what you are dealing with, but at least I'm familiar with the complete unspooling of your forward momentum in life that a disaster makes.  California has had way more than its share of trouble!

 

(I sent you a return PM Nov 20, but my computer skills are nonexistent and you might not have gotten it.  No need to respond, of course!  But I will add here that I recently found out Son#2 is indeed signed on to tour again all next year, so my hopes that he was finished with this world are dashed.)


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.


#35 Riggered

Riggered

    Member

  • Members
  • PipPip
  • 19 posts

Posted 12 January 2018 - 12:21 AM

Hi All, 

 

Some good news from the front. 

 

5.5 months into this journey. I've bumped around with some funky dosing and less than desirable results. I got a new doctor and feel like things are falling into place. Today I got results of Jan 4, 2018 PCR and I am at 2.65 IS. I've been on 70mg Dasatinib for the last 48 days and its working. Its thrilling to be within the guidelines as I understand them, now less than 10% within 6 months. My Onc believes I will achieve a Deep Molecular Response. I seem to tolerate the 70mg pretty well, its getting easier. Fatigue comes and goes. Cold hands and feet are a regular feature. I'm taking it all one day at a time, but I am hopeful.  

 

Housekeeping questions:

 

I tried to clean up my history and summarize it in a signature. I see that my signature has magically appeared above on previous posts and I hope it will appear when I post this. Any comments about how I presented my history / info are appreciated.

Also, Is it appropriate to continue to add on to this thread or should I start a new one? 

 

I read all the posts and appreciate what everyone brings to this meeting place. To the Elders..I am especially grateful for your experience and the time and energy to give to everyone. Its so helpful to have this resource.  

 

(Kat73, I tried to get back to you on PM, but I am not swift on operating machines that don't have handles:)

 

Good night from the land of fire, flood and mud. We are intact.

 

Riggered


Aug   1 -2017      DX as a result of annual physical. I had been feeling tired and out of breath, WBC 130, 

                            Baseline PCR 100 IS

Aug   4                Start Dasatinib 100mg daily

Aug 30                Stop drug due to Myelosuppression, CBC counts too low

Sep   8                Resume drug. (Onc prescribed 100mg every other day even though 50mg was the new desired                   

                           dose, this tactic because I had coincidentally just received 30 tabs of 100mg.) This every other day regime                             continued through Nov 8.

Nov   3                PCR 35.96 IS

Nov   7                New Oncologist

Nov   9                Start taking Dasatinib 50mg daily

Nov  25               Bump up dose to 70mg daily 

Nov  30               PCR 14.79 IS

Jan    4-2018       PCR   2.65  IS

 


#36 Buzzm1

Buzzm1

    Advanced Member

  • Members
  • PipPipPip
  • 972 posts
  • LocationSilicon Valley

Posted 12 January 2018 - 02:06 AM

Rigggered, you are doing fine.  Thanks for adding your CML history status into your Signature.

 

You are on track to reach 1% at six months.  After that the next goal is 0.1% MMR (Major Molecular Response).

 

Your oncologist is hopeful that you will reach DMR (Deep Molecular Response).  Not everyone does.  We only know it when we get there.

 

Until then just keep taking your Sprycel 70mg, report any problems you experience, ask questions, test periodically, update your status, continue to stay safe, and hope for the best. 

 

Continuing to post on this thread is fine.  

 

Again, you are doing well.

 

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 BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

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


#37 scuba

scuba

    Advanced Member

  • Members
  • PipPipPip
  • 1,044 posts
  • LocationHouston, Texas

Posted 12 January 2018 - 03:39 AM

Riggered - How are your CBC counts now that you are back up to 70 mg Sprycel?


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"


#38 Riggered

Riggered

    Member

  • Members
  • PipPip
  • 19 posts

Posted 12 January 2018 - 01:47 PM

Thanks Guys......

 

Scuba, Most recent CBC counts called out as lower than normal range:  

 

                  WBC     PLT

11-16-17 = 3.71      94

11-30-17 = 3.7        99

12-14-17 = 4.8        83

 

Onc thinks I am OK and stable. I am scheduled for CBC and PCR on April 12.

 

3 months without seeing the doc......,a combination of anxiety and freedom, heavy on the freedom. 


Aug   1 -2017      DX as a result of annual physical. I had been feeling tired and out of breath, WBC 130, 

                            Baseline PCR 100 IS

Aug   4                Start Dasatinib 100mg daily

Aug 30                Stop drug due to Myelosuppression, CBC counts too low

Sep   8                Resume drug. (Onc prescribed 100mg every other day even though 50mg was the new desired                   

                           dose, this tactic because I had coincidentally just received 30 tabs of 100mg.) This every other day regime                             continued through Nov 8.

Nov   3                PCR 35.96 IS

Nov   7                New Oncologist

Nov   9                Start taking Dasatinib 50mg daily

Nov  25               Bump up dose to 70mg daily 

Nov  30               PCR 14.79 IS

Jan    4-2018       PCR   2.65  IS

 


#39 scuba

scuba

    Advanced Member

  • Members
  • PipPipPip
  • 1,044 posts
  • LocationHouston, Texas

Posted 12 January 2018 - 02:18 PM

Sprycel is known to cause myelosuppression - and in my case - severe myelosuppression.

The blood counts to watch most are your neutrophil absolute numbers (ideally above 1.7) and Platelets (between 150 - 450).

 

As your Sprycel dose was increased from 50 to 70, you should monitor your blood counts more frequently than the next PCR test. Any lab can give you a CBC blood test. No need to visit a doctor.

 

I would have kept your dose at 50 mg as you were doing fine and not tempt myelosuppression again.


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"


#40 cmljax

cmljax

    Advanced Member

  • Members
  • PipPipPip
  • 115 posts

Posted 12 January 2018 - 03:00 PM

My CBC's were weekly until I hit CHR, then biweekly until I hit MMR (.1%).  My PCR's were monthly until I hit MMR and then were supposed to be quarterly until I hit DMR (Mr 4.5 or better), but 3 dose reductions meant more frequent testing after MMR. I go to Mayo, which tends to be conservative, but I think waiting 3 months to your next PCR is too long.  You definitely should have more frequent CBC's until those counts are stable and safe.


Dx 9/26/16 WBC 28800; platelets 749; FISH 97% PCR 43%

Tasigna 600MG per day

October 2016                     PCR 22% IS

November 2016                 PCR 5.8% IS

December 2016                 PCR 0.1% IS  MMR!!

March 10, 2017                 PCR 0.006% IS  MR 4.22

Tasigna 450MG per day

April 5, 2017                      PCR <.003% IS

June 5, 2017                     PCR <.003% IS (dose reduction validated!!!)

Tasigna 300MG per day starting June 15, 2017

6-day drug break starting June 20, 2017 due to multiple AE's

July 24, 2017                     PCR <.003% IS

September 18, 2017          Negative, AKA PCRU

Tasigna 150mg per day starting 9/18/17

October 30, 2017               Negative

December 11, 2017           Negative





1 user(s) are reading this topic

0 members, 1 guests, 0 anonymous users