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Trey - Quick question on Tasigna dosage


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#1 GerryL

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Posted 04 December 2012 - 11:35 PM

Hi Trey,

My doc is suggesting I switch to Tasigna, as I am still having muscle and joint issues on 300mg. I'm thinking that I possibly don't need to start at the full dosage of Tasigna, since 300mg Gleevec is still keeping me in PCRU. Do you know if it comes in different mg sizes and if so any suggestions on where it might be better for me to start in regard to dosage?

I've also agreed to switch to Tasigna, if I relapse when I stop taking the Gleevec in October next year. I figure he is expecting that to happen, but you never know I might surprise him yet.

thanks



#2 GerryL

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Posted 05 December 2012 - 11:53 PM

I've checked it out, I see that there are only two options with Tasigna 300 or 400 mg - looks like I would be on the 300mg.



#3 djm

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Posted 06 December 2012 - 09:04 AM

The capsules come in 150mg and 200mg and typically you would take (2) capsules every 12 hours.  So, with you being PCRu, you might not need to go as high as 300mg every 12 hours.  I don't know though, I'm still learning all this stuff. 



#4 GerryL

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Posted 06 December 2012 - 08:12 PM

Thanks for that, I hadn't noticed that it was two tablets every 12 hours. Gleevec comes in 100mg so it was easy to drop back on the dosage. I'll have a chat with my doc about whether there is a possibility of cutting back. Not sure that I'd have much luck though as there probably isn't a lot of info around for whether a reduced Tasigna dosage still works.

How are you going side effect wise?



#5 Trey

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Posted 06 December 2012 - 10:44 PM

Standard Tasigna dosage is 300mg twice daily (600mg per day).

http://www.us.tasign...376911797215187

As noted, it comes in different sizes to accommodate various dosages.  The equivalent to your current 300mg Gleevec would roughly be 200mg Tasigna twice daily.  I would either do 150mg T or 200mg T twice daily, if it were me (probably 150mg x 2 since that is half dosage).



#6 jjg

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Posted 07 December 2012 - 12:38 AM

Hi Gerry,

It's been a long time since I posted here but I've been popping in every now and again to check everybody is going well. I'm on tasigna now, 2x300mg compared to glivec (600 & particularly 800mg) for me it's like swallowing candy. A few little things in the first two weeks - mainly body aches and headaches. All my blood counts/chemistries, liver, ecg are normal - for first time on treatment there were no red numbers. Now there are times (couple of times a wk for a few hours) when I know I'm not 100% but nothing like glivec. Sometimes I can feel it hitting my empty stomach but no nausea. Small rash that comes and goes, no where near as bad as the rash I got from removing insulation from the roof last weekend. There have also been many days of being so normal, we'd kinda forgotten how energetic my normal is - my husband keeps asking if I might be tired and would I like to join him on the couch, lol

I see you are keen to both reduce dose and then go on to stop treatment relatively soon (was it after 2 years PCRU?). You many want to consider those two goals separately as at PCRU there are still a lot of bad guys left (a about a million I think). We know that people can maintain PCRU at lower dose (& good QoL) but we have no idea if those doses are dropping or maintaining the BCR-ABL levels. Anyway not trying to be too much of a wet rag because tasigna has been so good for me so far that I just don't need to reduce the dose for side effects (not that my PCR is in any condition for dose reduction). Now that everything is on the PBS you could always check the 2x300 tasigna out and reduce or even go back to glivec from there.

As an aside my doc said they had a patient on ponatinib - they were able to get it in Australia on compassionate grounds - apparently it is working for them too.


Dx Dec 2010 @37

2x IVF egg collection

Glivec 600 & 800mg

PCRU March 2012

Unsuccessful pregnancy attempt - relapsed, 3 months interferon (intron A), bad side effects from interferon

Nilotinib 600mg Oct 2012

PCRU April 2013, 2 years MR4.5 mostly PCRU with a few blips

April 2015 stopped again for pregnancy attempt (donor egg), pregnant first transfer, 0.110 at 10wks, 2.1 at 14wks, 4.2 at 16wks, started interferon, slow dose increase to 25MIU per wk, at full dose PCR< 1 for remainder of pregnancy

Healthy baby girl Jan 2016, breastfed one month

Nilotinib 600mg Feb 2016

MMR May 2016

PCRU Feb 2017


#7 GerryL

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Posted 07 December 2012 - 02:18 AM

Hi Josie,

Nice to hear from you. I'm glad you're doing well now on the Tasigna - my doc is keen to switch me to it as well. I've been dodging it the last couple of visits as rashes seem to be an issue with some people. I get a few odd things happening with Glivec, so wasn't too sure. I might switch next visit as the joint and muscle issues seem to be increasing on 300mg Glivec. I might see if I can do 200mg Tasigna twice daily as per Trey's information, particularly if I have another negative with the 300mg. But I'll need to get agreement from the doc of course. My doc doesn't like 2oomg Glivec so I won't drop anymore on Glivec without his consent.

I'm looking to have a go at coming off following 2 years PCRU. My doc has agreed, though I think he views it as a drug holiday and that I'll be back on Tasigna sooner rather than later. The majority of people relapse in the first six months, then about half of those still off their TKI relapse with the two years. You then restart your TKI and most returen to PCRU again.

I still have to wait until October next year before I stop, so am hoping for more information on it. And you never know perhaps they will have a cure for CML by then.

Hopefully we'll hear from you a bit more often.



#8 GerryL

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Posted 07 December 2012 - 02:22 AM

Thanks Trey,

I'll ask the doc in May about 200mg Tasigna, Though the side effects from the Glivec aren't the worst, I seem to be getting more pain and injury in my muscles and joints as I continue to take Gleevec. Interestingly though, I got a bit of strength back when I went to 300mg, now I can lift the light weights, but it hurts my hand to hold them.



#9 Pin

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Posted 07 December 2012 - 07:25 AM

Gerry, I'll be so interested to hear how you go on Tasigna. I have been feeling so miserable on Glivec lately, I have just been adding more and more compensatory pills to mix up all the problems it causes. Don't ge me wrong, I am incredibly grateful for how well it has worked (so far) but it can be a bit of a downer sometimes. Anyway, let us know how you get on :) My next test is due this week, hoping for some good news to show me I was worrying about nothing...fingers crossed.


Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).

Commenced monthly testing when MR4.0 lost during 2012.

 

2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)

2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)

2015: <0.01, <0.01, <0.01, 0.013

2014: PCRU, <0.01, <0.01, <0.01, <0.01

2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01 

2012: <0.01, <0.01, 0.013, 0.032, 0.021

2011: 38.00, 12.00, 0.14


#10 Pin

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Posted 07 December 2012 - 07:38 AM

Josie, it's so great to hear from you again, I wonder how you are going from time to time. I think you posted a while back and said that your ivf procedure wasn't successful and I wanted to say that I'm very, very sorry to hear that. Some people close to me have been through it and I know it is a very difficult process and I am sorry to hear of your experience especially given the added difficulty of the cml. You mentioned that you became unwell in other ways - are you better now? I hope so. It is really good to hear that you are feeling better on Tasigna. Was there a reason that they wanted you to change or was it your choice? How is your pcr now? Did it go up a lot by being off the Glivec? Anyway, it's nice to hear from you again :)


Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).

Commenced monthly testing when MR4.0 lost during 2012.

 

2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)

2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)

2015: <0.01, <0.01, <0.01, 0.013

2014: PCRU, <0.01, <0.01, <0.01, <0.01

2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01 

2012: <0.01, <0.01, 0.013, 0.032, 0.021

2011: 38.00, 12.00, 0.14


#11 GerryL

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Posted 08 December 2012 - 03:11 AM

Hi Pin,

I know how you feel, a lot of the time I think better the devil I know.

For some reason I've had the reverse happen compared to a lot of other people in regard to side effects with Gleevec, mine just seem to get worse. I didn't have a lot to start with, but those I've kept just get progressively worse. Apart from starting to now get a bit of soreness in my hands, I seem to have damaged tendons or muscles in my legs when I've got the occasional cramp. Had it happen again a couple of weeks ago. Not sure if they are a permanent injury now. Even reducing to the 300mg hasn't helped all that much.

You'll need to wait until May before I talk to my doc next about 200mg of Tasigna.

I'll have my fingers crossed for your next test, hopefully it starts to go down again, if not you might be starting Tasigna before me, which may not be the worst thing for you to do, side effect wise.



#12 jjg

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Posted 10 December 2012 - 06:35 AM

Hi Gerry and Pin, good to check in and I hope you are well.

I'll give an overview of the last 8-9 months, time flies when you're having fun and some of it was fun. I reached PCRU (<0.003%) with my 12 month test, the day of my 39th birthday and stopped treatment a month later when we (finally) got that result mid March. Obviously the CML was always going to come back but the question was how fast so (approx numbers from memory)

March, stop treatment

April, 1 month, 0.013%

May, 2.5 months, 0.71%

June, 3.5 months, 12.0%

July, 4.5 months, 24%, started low dose interferon

Aug, 5.5 months, 15%

Sep,  6.5 months, 12%

Oct, 7.5 months, 3.1%, restart TKI

So it came back much faster than it went away on glivec even though I was on 600 and 800.

They wanted to do a 3 month washout which seemed very long (by then my pcr was 0.71) but the high dose glivec I was on to get to PCRU had really messed with me so I probably needed that long to recover anyway. When I stopped glivec we realised I was carrying about 5% water weight - not much but without it my BMI was below 18 and guessing from my athlete days around 10% body fat. Coming off glivec was lovely - brain came back within days and within a week I was bouncing off the ceiling. We only got two ivf cycles before starting interferon, the first one frosty took but didn't stay, the 2nd one I didn't make any normal eggs. It was clear to me by then that the CML was returning. I actually detected I was sick before dx, even though I was dx with a WCC of 13, probably because I was so in tune with what my body should do with running and for no good reason something was wrong. Anyway by the time my pcr was 24% my running heart rate was higher than expected (resting HR fine),  I had a few unexplained fevers and a little very minor bone pain. It was weird to be calmly watching it come back - I wonder if the egg problems were to do with CML, my age was also a reasonable cause but in my favor I'd managed to put on 4kg to edge into the healthy weight range.

So then the fun finished and the interferon started. I started on 3.5 MIU 3 times a week and 3 months later had managed to get it up to 3.5 MIU daily. A number of times I thought it was trying to kill me but in the end it managed to bring my pcr down just a little. The first thing it did was put me into ovarian failure... fantastic!!!!... but after waiting 6 weeks of side effects my ovaries woke up and we got 2 more ivf cycles. I only made one good egg and that didn't fertilize. We tried to balance my side effects i.e. how much stress my body was under - too much, no point being on interferon cos not getting pregnant, too little CML getting scary. My hematologist let me decide the dosing on a day to day basis, but kept a close eye on me.  My fertility specialist  let my hematologist decide when we needed to stop for CML but the point at which we did stop she thought our chances of getting pregnant using my eggs were pretty slim. So we might get to try again with a donor egg, I don't have any friends of a suitable age (much younger than me) so that will be hard, maybe look OS, but right now we are taking a break from the whole thing and just enjoying the fact that I am well.

For the record the interferon was an interesting experience. I have no problem with injections, in fact if I could inject nilotinib to get around the fasting I'd totally be for that. The first injection was fine for about 2 hours, then it was like the worst flu for most of the night - uncontrollable shivering for hours then high temps - my husband slept through it all. There was no way I could have physically got out of bed for the first few hours and it took quite a while to uncurl enough to take more pain killers - really bad body aches. The next morning I dragged myself out of bed and did the craziest thing - sat on my bike (on the indoor trainer) and that helped so much. The first dose was by far the worst - the fevers and shivers lasted for the first month. Of course during that month we moved house (the doctors thought we were crazy, but these things happen). The body aches the day after the injections were horrible (it hurt to walk downhill even 12 hr later) but I preferred them to the nausea of high dose glivec. The fatigue was similar to high dose glivec but slightly more controllable. It did get better, which is why I guess my ovaries started working again and why I was able to slowly increase the dose. The unusual bad thing that happened to me were probably a type of complex migraines. I'd never had a migraine, I'd average 1 headache a year. The first migraine aura happened the second day on interferon and it was just the 30min aura followed by nausea and a moderate headache and sleep for a long while. It was scary but I rang my doc (when I could find her name on my phone through the aura) and she seemed confident it was ok to wait it out - plus I was headed home (on the train) which is 100m from a hospital. Then I had no migraines for a month, then multiple migraines per week for a couple of weeks and they started to get crazy with numbness moving down one side of my body e.g. one finger at a time but never more than one finger would be numb, or one half of my tongue. Another time I couldn't get words out. The best one was the time I couldn't read - the aura had gone, I could see the letters, I could see that they formed words but I couldn't read the words. Otherwise my brain was working and I was walking around trying to find my way into an imaging centre without being able to read the word imaging. All of this stuff lasted less than an hour. There was a lasting feeling of having just looked into a bright light - lasted for weeks at a time. Another not so minor thing was depression. I knew I was depressed but I didn't really know how much until it lifted a few days after my last dose. I now have a new appreciation for people who deal with depression. The hardest time with ivf is when it ends but that was also when the depression ended because I stopped interferon - a mixed bag. I also lost weight quickly in the first month, eventually 4.5kg and back down to a BMI that is not conducive to conception. Interferon completely killed my appetite. I would do gentle exercise (mainly stationary bike) before breakfast and be able to eat a normal to big breakfast and then struggle to eat anything until dinner. I was never hungry and would be full after a few mouthfuls.  Despite all of this my blood counts and blood chemistry were normal. I missed a lot of work.

The ivf procedure was really easy for me - pretty much painless and I did all the pickups with no sedation and could walk home straight away. Maybe it was easy because my body didn't respond well. Oh yeah I almost forget the breast cancer scare in the middle - normal to get lumps during ivf but this one was unusually big and hard.... but it was fine.

So it was a hard time, but I wouldn't take it back. We would have liked a better outcome, but we still have each other. I came home from the last ivf pickup (that yielded nothing) and my work mate had sent me a picture of his baby daughter born that morning.

All my counts, ECG, liver etc are normal on nilotinib and just waiting for my 6 wk pcr to come in around Christmas . It maybe too early to see much, but the Australian pcr results that trey likes to bag have been really consistent with trends in me, so I hope for a little drop that continues over the coming months. I should be more worried about it but I'm not... yet. At the moment I feel so well we have started planning our honeymoon - we were married a few days before I started glivec in feb 2011 so it's a little late.


Dx Dec 2010 @37

2x IVF egg collection

Glivec 600 & 800mg

PCRU March 2012

Unsuccessful pregnancy attempt - relapsed, 3 months interferon (intron A), bad side effects from interferon

Nilotinib 600mg Oct 2012

PCRU April 2013, 2 years MR4.5 mostly PCRU with a few blips

April 2015 stopped again for pregnancy attempt (donor egg), pregnant first transfer, 0.110 at 10wks, 2.1 at 14wks, 4.2 at 16wks, started interferon, slow dose increase to 25MIU per wk, at full dose PCR< 1 for remainder of pregnancy

Healthy baby girl Jan 2016, breastfed one month

Nilotinib 600mg Feb 2016

MMR May 2016

PCRU Feb 2017


#13 GerryL

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Posted 10 December 2012 - 07:55 PM

Hi Josie,

I'm glad you were able to write about your experience as it might help others who are at the same stage as yourself. I'm at a bit of a loss to know what to write, as though I know you're a strong women, the final outcome would have been incredibly hard, and if it were me, I would need some time to grieve. 

I know Trey bags our PCR testing, but for a lot of us the tests go through Adelaide, which is where our "CML experts" are, and they say they have the latest testing equipment. But I also know that for both of my BMBs I have never had a PCR result, so go figure.

Let us know where you decide to go on your honeymoon - maybe hiking in the Pyrenees since you have so much energy now that you're on Tasigna.



#14 Pin

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Posted 11 December 2012 - 01:40 AM

Josie - To say this would have been a difficult time for you is an incredible understatement and I am truly sorry for the outcome this time. I don't really need to say this because I know you know, but ivf is a difficult process anyway and with the added complications that we have it becomes even more so. I have been thinking a lot about how you are since you've been away and I sincerely appreciate you taking the time to share your experience in such detail, it is so valuable especially given the few of us who are in this position. But also those are considering stopping treatment soon - I am amazed at how quickly your pcr results went back up.  And the interferon experience too - wow! Those side effects are just awful! I am sure your next pcr test will bring in good results, you have been a great responder so far and Tasigna is only going to kick it even harder. Also, I'm super glad to hear that you feel heaps better on it - sounds like a lot of people here are going to be switched sooner. How does the window of food go? I get low blood sugar on Glivec if I don't eat frequently enough, and I don't fancy fainting!


Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).

Commenced monthly testing when MR4.0 lost during 2012.

 

2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)

2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)

2015: <0.01, <0.01, <0.01, 0.013

2014: PCRU, <0.01, <0.01, <0.01, <0.01

2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01 

2012: <0.01, <0.01, 0.013, 0.032, 0.021

2011: 38.00, 12.00, 0.14


#15 jjg

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Posted 11 December 2012 - 10:59 PM

It's really so nice to hear you guys say you're sorry for the outcome. In general people seem to be so terrified of bringing up the subject so there has been very little acknowledgment, although a couple of people have surprised. Actually I've been surprised, in a very nice way, with the support from my doctors - just little things that at big moments help a lot. So it turns out that my doctors are human after all and I have no idea how they find the time.

One thing for sure is that the interferon experience shows life could be so much worse - shit side effects/QoL and bugger all effect on the CML. In the "old" days that would have been the best part of the rest of our lives.

On my way to see my fertility doctor I'd often walk past Peter Mac (our cancer hospital) and I'd be thinking if I had a different cancer or it was pre-glivec I'd be in there, instead I get to keep walking to go to the hospital where people get a chance to have babies. So we never really lost sight of the fact that we were lucky to get that chance... although I had my moments... multiple moments to be honest.

We will see how it goes with the idea of using a donor egg, which means having children is not totally out of the question and my age is less important. I'm not welded on about having to use my eggs. In any case I worry a little bit about my genes not really because I have CML, but because I have CML and my only sibling has a genetic connective tissue disorder (maybe marfins) and on my mums side two out of three uncles died of childhood acute leukemia. If I get a good response to Tasigna I would go through the whole go off treatment thing again. The difference being I would want to be PCRU for much much longer than 1 month so the possibility is years away.

Pin, wrt to Tasigna - I take it at 5am and btw 4-6pm, but thinking of moving it all forward an hour. I set the alarm for the early morning one and go straight back to sleep, even my husband who isn't a great sleeper has adapted really well. The afternoon one is  not a time I would normally be eating. I do move the exact time around a bit so the main thing is noting the time that you finish lunch and taking it 2 hours later - I don't know much about blood sugar but I'm not starving 3 hours after lunch, although I have added tuna or something similar to lunch to make sure of this.

Gerry, you are so very close with the Pyrenees and hiking - maybe not the Pyrenees but definitely mountains (I spent a few days in the Julian Alps in Slovenia and would love to go back - but europe is so full of mountains) and definitely some hiking and hoping for mountain biking &/or road cycling up some mountain passes... the only thing I'm not looking forward to is trying to find travel insurance.


Dx Dec 2010 @37

2x IVF egg collection

Glivec 600 & 800mg

PCRU March 2012

Unsuccessful pregnancy attempt - relapsed, 3 months interferon (intron A), bad side effects from interferon

Nilotinib 600mg Oct 2012

PCRU April 2013, 2 years MR4.5 mostly PCRU with a few blips

April 2015 stopped again for pregnancy attempt (donor egg), pregnant first transfer, 0.110 at 10wks, 2.1 at 14wks, 4.2 at 16wks, started interferon, slow dose increase to 25MIU per wk, at full dose PCR< 1 for remainder of pregnancy

Healthy baby girl Jan 2016, breastfed one month

Nilotinib 600mg Feb 2016

MMR May 2016

PCRU Feb 2017


#16 GerryL

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Posted 11 December 2012 - 11:35 PM

The travel insurance is an interesting issue. When I bought travel insurance for my trip to the States, it was before I was diagnosed and I rang them once I knew, but they let it go through because I had bought it prior to diagnosis. Though our CML won't be an issue medication wise, I wonder if you got sick with something while you were away whether they would cover you for it, or say it is linked to the leukemia. I had to go to the doctor while I was on my trip - bronchitis, sinusitis and ear infection, which required antibiotics plus doctor's visit. All up it cost me around $300.00 which was reimbursed. But if I had been diagnosed prior to flying, would I still be covered for that - not sure if they would have blamed the CML for it. Which for me wouldn't be the case, I rarely get sick and it was only because I was a bit stressed that I may have to give myself Hepron injections, that I fell ill on the morning I was flying out. Let us know how you go with insurance, one day I may get to travel overseas again. LOL



#17 Pin

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Posted 13 December 2012 - 08:56 PM

To be honest, I'm almost positive the Glivec caused my blood sugar issues - so I guess if I was on another drug it might not be a problem!


Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).

Commenced monthly testing when MR4.0 lost during 2012.

 

2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)

2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)

2015: <0.01, <0.01, <0.01, 0.013

2014: PCRU, <0.01, <0.01, <0.01, <0.01

2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01 

2012: <0.01, <0.01, 0.013, 0.032, 0.021

2011: 38.00, 12.00, 0.14


#18 Pin

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Posted 13 December 2012 - 08:58 PM

Yeah, I wonder how this works. Last time I got OS travel insurance they told me it wasn't covered (of course) but I wonder how you demonstrate that getting sick in any way is or isn't linked with your illness. Interesting.


Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).

Commenced monthly testing when MR4.0 lost during 2012.

 

2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)

2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)

2015: <0.01, <0.01, <0.01, 0.013

2014: PCRU, <0.01, <0.01, <0.01, <0.01

2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01 

2012: <0.01, <0.01, 0.013, 0.032, 0.021

2011: 38.00, 12.00, 0.14





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