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