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Interferon as maintenance following TKI cessation

Started by scuba , Feb 09 2016 10:37 AM

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#1 scuba

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Posted 09 February 2016 - 10:37 AM

Interferon alpha 2 maintenance therapy may enable high rates of treatment discontinuation in chronic myeloid leukemia

http://www.nature.co...leu201545a.html

 

Interferon is natural to the body. Research (above) shows that use of interferon before TKI start and then following TKI cessation leads to a much higher rate of TKI (Gleevec) cessation success - as high as 84%.

 

I wish I was started on Interferon first. There is a strong correlation that patients (our Susan is one) who had Interferon first followed by Gleevec and then stopped therapy after achieving MMR or below remained treatment free. It is a super high percentage that succeed this way vs. Gleevec alone.

 

It's exciting that research is moving in the direction of managing CML via various cessation, drug reduction and careful monitoring than just one size fits all - i.e. full dose - take every day for the rest of your life approach.

 

Trey has been PCRU for a very long time (> than two year minimum for cessation attempts) and now takes 200 mg Gleevec for "maintenance". I do wonder if switching over to Interferon alpha2 would be just as good but without the Gleevec side effects. 


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"

#2 Kali

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Posted 09 February 2016 - 11:12 AM

Good stuff, Scuba. Thank you for sharing. Positive advances for CML management or maybe even a cure gives encouragement. It is good to know the research continues to yield more information that could end up being productive.

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%

#3 Frogiegirl

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Posted 09 February 2016 - 04:00 PM

I wonder if interferon alpha 2 would be the type of interferon they would put me on during my pregnancy if I lose response? ????? Hmmmmmm

Diagnosed Oct 2013 Started 600mg of Tasigna  on Nov 4th. Lowered dose a few months later to 300mg due to side affects stayed here declining PCR until March 2015 small jump from 0.0072 to 0.0083 scarred my doc into full dose of Tasigna again 600mg(been miserable since) but reached PCRU 06/15/2015(next test) and have been there ever since. Hoping to have another little one. I have the support of my doc to go off anytime, just scared to jump. might go two years PCRU but he said it wont make much of a difference. I just figured I could possibly go into a trial while preggers if I got the two years behind me.

Nov 8th 2017 went off Tasigna

Dec 1st PCRU off TKI

Jan 5th PCR Detected .0625

Feb 1st PCR Detected .7815

Added 8-6 grams Curcumin daily in Feb

March 3rd PCR Detected 3.2646 YIKES!

 stopped trying for baby after February reading. will start new TKI march 16th 2017 (Sprycel)

FYI I'm not done trying for my last little one.

#4 scuba

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Posted 09 February 2016 - 04:22 PM

I wonder if interferon alpha 2 would be the type of interferon they would put me on during my pregnancy if I lose response? ????? Hmmmmmm

 

More than likely. There are different types of "interferons" for different purposes. Interferon alpha is primrily for cancers such as leukemia (http://www.webmd.com...jection/details).


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"

#5 Frogiegirl

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Posted 09 February 2016 - 04:52 PM

I don't think I could give myself shots. My neighbors husband is a nurse, maybe I could hire him to give me the shots during my pregnancy. ....although I'm hoping I don't need it;)

Diagnosed Oct 2013 Started 600mg of Tasigna  on Nov 4th. Lowered dose a few months later to 300mg due to side affects stayed here declining PCR until March 2015 small jump from 0.0072 to 0.0083 scarred my doc into full dose of Tasigna again 600mg(been miserable since) but reached PCRU 06/15/2015(next test) and have been there ever since. Hoping to have another little one. I have the support of my doc to go off anytime, just scared to jump. might go two years PCRU but he said it wont make much of a difference. I just figured I could possibly go into a trial while preggers if I got the two years behind me.

Nov 8th 2017 went off Tasigna

Dec 1st PCRU off TKI

Jan 5th PCR Detected .0625

Feb 1st PCR Detected .7815

Added 8-6 grams Curcumin daily in Feb

March 3rd PCR Detected 3.2646 YIKES!

 stopped trying for baby after February reading. will start new TKI march 16th 2017 (Sprycel)

FYI I'm not done trying for my last little one.

#6 hannibellemo

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Posted 09 February 2016 - 04:55 PM

I personally, not knowing much about it, would prefer low dose TKI if all interferon treatment (alpha, 2 or whatever) have the same propensity for really awful flu-ish side effects.

 

Just me.


Pat

 

"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>

#7 rct

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Posted 10 February 2016 - 08:16 AM

Have you talked to your oncs about interferon?

 

Most common side effects, 30% occurrence: 

 

Flu-like symptoms, but not long lasting.

Fatigue

Low Blood Counts  that isn't very helpful at all

Hair loss

Nausea and Vomiting

Diarrhea

Shortness of breath

Cough

Sore throat and mouth sores

Depression

Muscle pain

Weakness

 

Sounds like...Gleevec!  Except they don't list half of those with Gleevec, the half that hurts the most people.  I don't know about your oncs but our oncs, including Druker, pray that the day never comes that Mrs has to take interferon, for we know that time is very short when that happens.

 

rct


#8 jmoorhou

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Posted 12 February 2016 - 01:29 PM

I've heard some bad things about Interferon.  Natalie Cole who died couple of months ago took it for Hep C and it destroyed her kidneys...she had to go on dialysis before she got a transplant...she was a singer and Nat K. Cole's daughter.


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

#9 lanadal

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Posted 12 February 2016 - 02:13 PM

I took Peg Interferon (not sure what this means about the type of Interferon) for @ 6 months when my PCR started climbing after almost two years on Gleevec. At that point back in 2005, there were no other TKIs available. It was miserable...just like having a case of the flu continually.It also left me with peripheral neuropathy. I actually got really used to giving myself shots so that wasn't a problem. Unless the dosages were really small, I wouldn't want to be on that stuff again. It did it's job and brought my PCR back down though.


My facts: 

Diagnosed 2003 and have taken Gleevec 400 mg until recently. I am now taking 200 mg and will go have PCR testing every three months to see if all stays relatively stable. Have bounced between PCRU, PCR "weak positive", and .005 ever since.  Had a brief rise in PCR in 2005 for which I added Interferon (Yuck!) for 6 months which sent me back to previous levels and left me with neuropathy.

#10 scuba

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Posted 12 February 2016 - 02:23 PM

There are several different types of medical Interferon and they all have different side effects profiles. I know Pegylated (Peg) interferon is nasty and was used in the early days of treatment. The only good news out of that period is that patients who started on Peg Interferon and then went on Gleevec had a much higher incidence of treatment free remission later (much higher over 85% success). I don't know if starting on Gleevec first then Peg later has the same impact.

 

The interferons that are used now are milder in side effects (alpha 2b).

 

It was just an interesting article.


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"

#11 missjoy

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Posted 12 February 2016 - 07:25 PM

Thanks for sharing the article,Scuba! The article about Interferon is very interesting. It gives hope specially for young patients. I recall some other papers stated that patients who were treated with Interferon had high rate of success in TKI secession. I also read there is a TKI +Interferon trial going on at Johns Hopkins. Hope we will see the results soon.

#12 Buzzm1

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Posted 12 February 2016 - 07:40 PM

The following two Stop studies included patients who had prior treatment with Interferon:

 

STIM1 http://bit.ly/1Ho12iw 2009

half of the patients were previously treated with IFN leading to a non-homogenous cohort of patients
39 of 100  remained treatment free 
 
Twister http://bit.ly/1kU7zre 2013
half of the patients were previously treated with IFN leading to a non-homogenous cohort of patients.
a minimum of 3 years of imatinib and a minimum of 2 years of UMRD
a prospective study of 40 patients with UMRD by using a qRT-PCR assay with a sensitivity of 4.5 log.
18 of 40 (45%) remained treatment free

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

#13 gerry

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Posted 12 February 2016 - 11:08 PM

I'm interested in what the results will be for the second generation TKIs and stopping - more people are getting to PCRU with the opportunity of stopping, but will this mean an increase in the percentage of people being able to stay off their TKI?


#14 Bb1823

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Posted 13 February 2016 - 07:04 AM

I was wondering the same thing Gerry!

#15 missjoy

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Posted 13 February 2016 - 02:52 PM

http://www.ncbi.nlm....36/#!po=34.3750

There are several clinical trials on second generation TKI and Interferon in Europe .

#16 Terran

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Posted 13 February 2016 - 04:22 PM

Interferon alpha 2 maintenance therapy may enable high rates of treatment discontinuation in chronic myeloid leukemia
http://www.nature.co...leu201545a.html
Hmmmm???
Very interesting....
I must now learn about interferon.

#17 gerry

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Posted 13 February 2016 - 04:24 PM

Yes, but still waiting for results to be published. For those of us that have managed to stay off our TKI and were on Gleevec, at the moment it is is considered to be the immune system (NKs) that are controlling it.

I guess I'm waiting to see if using the second generation TKIs, which are getting more people to PCRU, also increases the number of people being able to stay off the TKI, or does it stay at the same level around 46% or will it reduce due to it being the TKI and not the immune system doing all the work.

At worse even if it is the last option, this then gives them a better target to work towards, if that makes sense.


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