13 replies to this topic

[BPilgrim]

Has anybody switched to Sprycel or Tasigna, but then switched back to Gleevec?  I ask because while I've had a terrific response to Gleevec, the side-effects are getting worse for me.  Still, I fear that the second-generation drugs might not work for me as well as Gleevec, and if they didn't work, I worry that if I switched back to Gleevec, it would no longer be as effective for me PCR-wise (perhaps because I've introduced new drugs into my system, etc).

Any thoughts or experience?

Thanks.

[CallMeLucky]

I don't have direct experience but am interested in the subject given I am in similar situation.  There was someone on the board who started with Tasigna or Sprycel, then switched to the other and then wound up going to Gleevec and that was the one that seemed to be working for them.  I think it was side effect related and not an issue of efficacy.

I wouldn't worry too much about the second generation drugs not working as well, for me the issue is what if the side effects on the second generation drug are the same or worse.  Then I'm paying for the more expensive drug and not getting any benefit.

I can't think of any reason why Gleevec would stop working after you started using one of the second generation drugs, but who knows, I don't think there is going to be a large sample group of people in this situation.

I just keep thinking about what my doctor told me when I asked about switching and if it was a good idea.  She said "most people tell me when they switch they got their life back".

[Trey]

Switching back to Gleevec is an option when the issue is finding the best side effects profile.  It would work the same way it did previously.

[BPilgrim]

Trey, I am going to read your May 27, 2009 post on Sprycel vs Tasigna tonight, but I wonder if there has been any consensus since then as to which drug is more preferrerd for patients switching away from Gleevec soley for side-effect reasons?

[Trey]

Depends on which side effects you are trying to escape or avoid.  You cannot avoid all of them unless you are very lucky.  Read the S vs. T posting and then ask again.

[pamsouth]

Not yet, but doctor is trying to convince me to switch and I am not a happy camper.  Been on Gleevec since 2005.  Doc been trying to get me to switch for about a year.  Last year she said it was a better drug.  Last week PCR counts up.  However I called the lab and they have changed their scale to international scale about a year a go.  How in the world can a doctor know how an indidual is going to react to a new drug.  Besides Gleevec has been out longer and has a good tract record.  These newer drugs are still uncharted territory.

Not looking forward to engaging my ONC,  Think I will fly back down to MDanderson Cancer center Houston TX where they do in house labs which are much more accurate.

[BPilgrim]

I hear you Pam.  It's not an easy decision because of the potential new side-effects.  But if your PCR counts are going up, that's a different story.  Switching might make more sense in that case.

[pamsouth]

I just listened to the CML Telephone Conference with Dr. Michael Mauro. (10/25/2011)

One of the questions asked was "Why is the cost of Gleevec by Norvortis so expensive?"  The caller was having a hard time paying for the drug.  The answere was try co-pay assistant.  I personally have called them but they won't tell me their formula or how much assistance until you lose your insurance.

I have heard other's  complain of the same thing.  In spite of  applying for co-pay assistant many people do not meet the quoto for a lot of help.

Gleevec was patented in 2001 and I hear it will expire in 2013 or 2015, and once it becomes generic it will become much cheaper. 

I can't help but wonder with the slash of research money from the federal government and patents about to expire, if that is perhaps is why the push to the newer patents, to find up for the lost, research money.

Problem with that is these expenseive drugs are driving our insurance cost up.  Compaines are reluctant to hire full time because they can not afford the high cost of insurance.

My beef, how can our country sustain these drug cost.  If the Labs have changed their formula then it is not the leukemia cells are up, it is beauracy of the drug companies,  My insurance is complaining about the high cost.  No longer will ship me 90 day supply only 30 days and right down to the wire.

[cometbro]

I switched from Gleevec (first 2 weeks after initial diagnosis / end of Oct 2010) to Tasigna (about 8 months), to Gleevec (almost 4 months and counting).

I switched from Tasigna to Gleevec because of severe reflux (see my post on why)
http://cmlc.ml...huge-pcr-increase-in-2-months

I did stop taking TKIs for about 3 weeks and had a huge increase in PCR (as you'll see in the post).  My Onc says this is due to stopping the TKI and not because of Gleevec not working. I will have my next PCR in the middle of next month to really determine how well Gleevec has been working for me.  Although, since i'm now getting reflux from Gleevec as well (to the point where it is interrupting my sleep every night), I am thinking of switching to Sprycel, but haven't decided yet since i'm afraid of getting new side effects.

Gleevec is more convenient for me because I can just take it once with food and forget about it.  Tasigna will always be an option but now that I see how easy it is to take the Gleevec pill, I would only go to Tasigna unless it is really necessary.  Sprycel is the other option.

I will update the other posting when I get the results for my next PCR.

[pamsouth]

@ comtbro.  I have been on Gleevec since 2005.  Was not well the first year, but after that it was a piece of cake except; for the night sweats, which are not so bad now, and I have had night sweats since I was 53 ( I am 63) just the sweats got worst after Gleevec.  I also have chronic bone pain, but I have had that since an injury at work in 1994 to lower back and another injury to the neck in 1997.   When I was DX with CML I did not have a high white count, my platelets were 2 million & they shouldn't be over 500,000, and my granulates were slightly off, you know the Neutrophil, Eosinophil, Basophil.  I have had some blood pressure issues this year but I think that is because we have had a lot of stress in our family with two death and my husband was very sick for 2 months and my son was in the hospital for 88 days.  So I don't think it is the Gleevec. 

My PCR have been undetectable the last few years, but the last one was up 23 %.  However I called the lab and about a year ago they changed to an international numeric scale, which can make counts much higher when in fact the leukemia hasn't changed just the way they do their labs.  Also PCR test are very sensitive to test for more leukemia cells, etc, but there is much more room for error when they are sent out of state, as the test need to be done quickly and go thru a lenghty process, and are magnified over and over.  Cancer centers like MD ANDERSON of Houston Tx do their labs in house, so much more accruate.  I don't really  know if my leukemia cells are up or is it the way the lab is doing their scale or is it the buracacy over the drug research money?

Anyhow last week did another blood drawl.  I believe it is sent to St Francis first to put on slides then somewhere else, then to New Jersey.  Not Sure exactly how that works, but always get a bill from St. Francis Hospital and from New Jersey BioReference lab Gen Path.

If the PCR is still up my Oncologist is wanting to change me to Tasingna.  Which she says will be a piece of cake.  By the way my CBS'S are Excellant and my FISH is usually 92 % to 100 % undedectible.

I am having anxiety issues to change to a new drug in un chartered water and who knows how one will react to it.  Plus my insurance is getting upset over the cost of Gleevec which is less then Tasingna. Also the Gleevec Patent came out in 2001 so it will be expiring sooner then the other durgs, and will become cheaper as a generic, not sure when Tasingna came out but much longer patent. I just got an email from leukemia foundation to sign a petition as the research money from Blood Cancer.  I believe I read a report some time ago that over 88% of the patients that started on Gleevec in 1997 are still alive.  So only time will tell the longivity and the long term consequences of these drugs, so I'm still voting on Gleevec. I shutter to think of changing to a new drug.  I really don't like my docotr brusing it off as a piece of cake.  When I had my gall bladder out, well you my be uncomfortable for a week or so, but changing Leukemia or cancer medicine is a whole different ball game.

If this PCR comes back bad am thinking of flying from my home INdy Indiana to MD Anderson Cancer Houston TX.  That is just how upset I am over changing drugs.  I can remember doctor telling me what a piece of cake it would be on Gleevec it was not a piece of cake for a very, very long time.  Don't want to go thru that again!!!

[pamsouth]

Praises to the LORD for answered prayer!! my PCR lab for leukemia came back good!!! There are 3 Genetics marker they check for; the lab last week was; b2a2 up to 23.45%, this week lab was NOT DETECTED, last week b3a2 up 23.45% this week only 12.12%, last week e1a2 NOT DETECTED. this week STILL NOT DETECTED.

I believe that still puts me at a 4 log reduction on 2 markers b2A2 & E1A2 and a 3 log reduction on b3a2.  I think Trey said to convert it from percentages to move the decimal over 2 places therefore the 12/12 % - .1212 and a 3 log reduction is 0.113.

I can't tell you how much i appreciate all the folks prayer and support. Just know that someone is praying, means everything. May God Bless His People with riches untold.  I find it is so easy to praise God with unspeakable joy when on the mountain tops, but when in the valley it drives me to my knees.  So I want to give thanks for this site to help relief my anxiety/vent and lean on your shoulders.  May God have Mercy on us and give us strength and joy in these uncharted territories.  May God give our Health Care Providers, that we entrust ourselves to, wisdom in all they do, and realize that we are humans, with unknown fears and complex disease, and please listen to us and let us have second opinions and choices with out intimidating you. 

Just a reminder that life is short, so put things in order and say thank you, to the ones that stand with you and give a shoulder to lean on, and remember to pray and forgive the ones who walk away.  Thank You for all your post and God's Blessing On All!!  I haven't kept up with the post until  these last couple of weeks, but I will now and I will be praying for each and every one!!

Prov 16:24  Pleasant words are a honeycomb, sweet to the soul and healing to the bones."

[Trey]

You posted this two places, so I will repeat my other posting:

I need to correct an item -- you did not accurately quote me about moving decimal points.  If the PCR is already a percentage, you leave it alone.  If it is a ratio, you move the decimal point to the right, not to the left (which makes the number  higher, not lower).  So your PCR really is 12.12%

I know that you said the lab switched to International Scale (IS).  On the IS the 3 log reduction is .1%

If  you have multiple breakpoints such as b2a2 and b3a2, you add the PCR numbers together to get the total PCR score, and the log reduction is calculated based on the total number, not on individual numbers.  You said your previous b2a2 and b3a2 were both 23.45% -- that would be a very unusual statisical coinicidence, if accurate.  And even more unusual that the b2a2 would go from 23.45% to zero in a week (why 2 PCRs  in 2 weeks?).  Not trying to be negative, just trying to double check.

[pamsouth]

Hey Trey,  I sent you a reply on the other discussin board and since I posted here, too,  I will just do a copy and paste.  WARNING IT IS WORDY!!

I was hoping you would follow up with me regarding the decimal & rational.   You really pay attention!  I have really been reviewing these reports.  With the PCR LAB last week my emotions have been all over the place try to stay positive.

I am with you Trey,  "very unusual coincidence."  This whole year has been confusing for me on my PCR.  The way the numbers are going up down seem weird to me, as the previous years have been undetectable. Before that I was felt so blessed to have such a wonder drug as Gleevec, except for that first year, and it was a ruff one.

By the way my ONC has been trying to get me to switch from Gleevec to Tasigna for about a year now.  I have taken Gleevec since 2005, (6 years)  My CBC are almost alway near perfect and my FISH is anywhere from 92% to 100 % normal nuclei.

The fish report for 10/18/2011 was 96 % normal 1 green BCR, 1 orange ABL and 2 yellow fusion signals (x1000).

I was just so excited today when I picked up my lab results.  This last week I was have anxiety attacks just thinking of changing drugs 7 that my leukemia was on the rise or had mutations, I hear it not so good if you into blast or acute, that was my fear, going into a blast.  In fact my doctor didn't even call me to tell me the labs were in yesterday like she did last Tuesday. Today I called the office and had them make a copy and went straight away to pick the lab report up.  After reading the lab all I cold say was Thank You Jesus.  Doc really had me scared last week.

I beginning to  think something is not right with the laboratories, but what do I know I am not an expert.

The last two PCR are dated (1) 10/24/11, Collected 10/19/1011, The PCR before that one was, (2) date of report 10/18/2011, colleted 10/12/11.

The lab is BioReference Lab GenPath of New Jersey, (800-29905227.) I live in Greenwood, Indiana, just a couple miles south of Indianapolis, In. where my Oncologist office is.

I have the PCR reports in front of me. plus I am looking at the chart,  that has a scale dated from 8/29/2009 to last report 10/24/11.

The reason the 2 PCR  is because my ONC was alarmed that my b2a2 and b3a2 were both 23.45 and she wanted to switch me from Gleevec to Tasigna.

But then again Onc  tried to get me to switch to Tasigna  last year, when one number was up just a tad, but the report said they had made a mistake, had to draw from another well (whatever well means) and it was negative.  Until I pressured the receptionist to check for more paper work, I found out there about 3 or 4 pages on the PCR report that Dr. didn't bother to tell me the lab made a mistake and drew from another well for PCR Then, I believe at that time the b3a2 ws only 0.19, which I though was strange to warrant another PCR and alarm me that Gleevec wasn't working and there were better drugs, and it would be in my benefit to change now!!  Even though the lab had already corrected the mistake, she still did a another lab and sent away.  I really didn't get the whole thing because first of all it was only up a tad  and the lab had already corrected the mistake.

I am looking at PCR report dated 10/24/11.  It shows B2A2 NOT DETECTED.  B3A2 12.12 %.  Now I a looking at the scale chart that saysPRIOR ACCESSIONS;   Lab Rec 10/14/11 B2A2 & B3A2 both at 19.53 %.

Next one says Rec Date 11/23/10 B2A2 0.00 % & B3A2 0.10.  Next line up says.  Date rec. 11/23/10 B2A2 0.00 % & B3A2 0.19 %.  Next line up says, date rec. 6/19/10 B2A2 & B3A3 both 0.00, Next line date rec 9/19/10 is the same.  Next line is 8/29/09 is B2A2 0.00 % B3A2 1.20 %.  ALL THE E1A2 are 0.00 %.

i noticed that from the date lab collected usually on a Wed to the date of report is usually 5 days, so wonder how quickly they get the blood lab and quickly it is processed in that there is a week end.

It does seem to odd to me that lab collected on 10/12/11 Wed, & lab collected on 10/19/11 Wed, b2a3 would go to 0.00 % from a 23.45 %.

It also seems odd to me that both b2a2 and b3a3 would be 23.45 % on 10/14/11 and both b2a2 & B3A3 would be 19.53 % on 2/24/11.

I really need to scan this document over to my laptop and attach it, but not sure I could figure it out in a short time.  Have not scanned anything over and attached to a document for a long time.  But I believe (if there are no type error) these number are correct.

I was glad to hear you question the numbers, as I don't know anyone to compare these notes with, just had a gut feeling the number seemed odd.  However I am reminded that a drop of blood out of millions of cell could pull up anything just seems odd that some of the number are identical on two different genes.  Is that what you call b3a3 and b3a3 genes?

I know most people just go along with whatever a doctor says, but I have been around the health care for so long and I have seen so many mistakes.  We took care of my mother for 3 years before she passed and I spent many hours in the hospital.  My husband was sick for 2 month last year and I thought I was going to have to put him in the nursing home.  It turned out that he was allergic to the generic of mobic an arthritis medicine and the doctor kept increasing the dosage and added pain, pills, gabatone and predizone  and he was over medicated.  Think I misspelled some of those drugs. He  swelled up, couldn't hold a utensil in his hand or button his shirt and falling down. His lab were so awful and he had a bleed.  I was taking him to so many doctors, thought he might have cancer finally weaned him off the medicine and now he is working part time.  Then my 38 year old son just got out of the hospital a couple of weeks ago,  He was in 3 hospital for 88 consecutive days, and on full life support for about 30 days.  I carefully documented his journal on caring bridge and kept daily notes.  He is now home taking care of himself but still has pneumonia in the lower left lung and braces on his feet. Well enough said but I have been around this redo before.  I am just getting to old at 63 and with CML  stressing is not good thing.  In fact back in Feb had to change my blood pressure med as developed irregular heartbeat, to much stress, also had 2 deaths in the family.  Seems like I have spent a lot of my retirement years being a caretaker.

Thanks for your comments I really appreciate them, as have been stressing waiting to get this report, but I really feel relieved that the pcr is much better then the one two weeks ago 7 perhap the labs is have some difficulties.  I told my Onc my CBC and Fish report are so good, and she said yes but this PCR is so much more sensitive, but added it does have room for error as it is magnified over and over. Also she said my CBC will not be good within the next 6 months.  So she said lets just do another PCR go off gleevec for 2 weeks and then go on Tasigna, and it will be a piece of cake and you won't have to worry. But some reason I just had a bad gut feeling it was not a good ideal at this time to be thinking of switching from Gleevec.  I read somewhere that over 88 % of patients that have been on Gleevec since 1997 are still alive and doing well that is a pretty good track record.  I know these trials experiments are important but so much uncharted territory.

Was wondering where you get all your knowledge on the subject of PCR and the log, etc?

Thanks Again