19 replies to this topic

[Marnie]

The good news is. . . PCRU, even after 2 short drug breaks.  Yea!!  That was a surprise!  Doc is happy to have me stay on 50 mg (he is becoming more progressive!)

The bad news is. . .ruptured disk. . .I have no common sense and snowboarded on it all day last weekend.  Excrutiating pain.  Back to work tomorrow, which will be rough.  Hope the recovery doesn't take too long.  I still have 2 pre-paid ski passes (yes, I am an idiot).

[August1]

Marnie,

Congratulations on the good news! Can't blame you for taking advantage of the great conditions. Sometimes you just have to go for it. Hope you feel better soon.

Bill

[Tedsey]

That is awesome!  So are you.  Sorry about the painful disk!  Hope it heals fast.  Sadly, degenerative disks run in my family.  I have had  mine since I was 16.  Drs said my back looked like an 80 year old when I was just a kid, (may I live that long--poo, poo---Greek/Italian thing to say to protect me when I make such a statement).  Ironically, I don't have much pain and ironically have always been active.  I have bad disks from tush to neck (lots of injuries though).  I was warned chiropractic manipulations would kill me.  Ugggh! 

Re. Sprycel, tried to convince my doc to let me take 70mg a couple days ago.  She feels very skeptical because it has "taken me so long to get to MMR".  I am not sure what the published expectations are going around now (I say this somewhat sarcastically).  Things seem not to have changed on the CML Guidelines.  I was dx Nov. 2009.  CCyR at 12mos. (on dasatinib 3+months).  Achieved MMR at 23 months on dasatinib (this is when the same lab changed to IS AND at that time, I was unaware that I was MMR because hem/onc made long calculation on a calculator and told me I was NOT).  After that, I had very low, stable MMR until I became PCRU last May.  I am now waiting for the most recent PCR to come back.  I was on Gleevec to start and switched to Sprycel after 9 months.  I seem to have been on the published CML Guidelines track all along.  It turns out, after all my lamenting over being a turtle, I was pretty average.  I was just behind the pack (my BIFs) here on the board.  My hem/onc has no time to compare numbers.  However it appears I have done even better than average since less than half of people on TKIs achieve CMR or  PCRU status--unless the number of those lucky dogs increased. 

Do not want to appear too bold, (I am very clear on the probability that I will never go off this drug unless there is a cure).  I just want to ward off PE and possible damage to my organs.  It appears eventually most people on dasatinib 100mg get PE at some time.  I am now a pretty big believer in dosing as needed.  Do I just have to wait to get PE before I will be allowed to reduce dosage?  I question that I am a "bad candidate" to go lower like my Dr suggests.  Wish I could find what the numbers are with people developing PE on dasatinib over 3 years on the drug (or what the avg. time frame on the drug is for those who get PE, and what the overall % is of those who take dasatinib who get PE).  It appears to be almost certain that if a person loses MMR at a lower dose, they can go back on a higher dose and regain it (hence, drug breaks due to low counts, PE, etc., so forth and so on..).  As long as a person is monitored, a decrease in dose should be no problem, and the probability that the disease will "take over" or "mutate", is low.  Where are the published articles on this?  Sorry, not asking you specifically!  Anyone?--if anyone else is reading this! 

Sorry to hijack Marnie.  I am so happy to hear that you are doing so well on such a low dose.  Hope you will hold CMR on 50!  Maybe it will help your back heal faster!

Take care,

Teds

[Marnie]

Hey, Teds. . .if it makes you feel better, my doc was extremely skeptical about taking anything less than 100 mg of Sprycel.  Finally, because of the pleural effusion(s) I was forced to.  We had some miscommunication and I took a 15 day drug break (second time. . first was 9 days).  He didn't intend for me to be off drugs at all.  When the results came back at zero, he (and I) were completely surprised.  At the appt, he started babbling on about the trials where people who have been 2 yrs PCRU have been off TKIs, some with success (I already knew all of this, but maybe he didn't). . .anyway. . .I was blown away when he commented that maybe 50 mg was my number.  He even said that in 3 months, if my numbers have gone up, it still might make sense to stay at 50 mg since the side effects at 100 mg are bad.  I think he's realizing that you don't always have to go exactly by the guidelines. Docs are working with patients to find what works, and the accepted guidelines have gray space now, as more information is coming in. 

So. . .maybe your onc will come around, as well. 

Also. . .makes me feel better to know that a blown disk is not an extremely major thing.  I've never had issues so this was a complete surprise.  I wasn't even doing anything when it went.  I had been carrying an extremely heavy ski bag, climbing a bunch of stairs.  Set things down, we sat down to relax with a cup of hot chocolate, waiting for the chair lift to open up.  Went into the bathroom, bent over to start pulling clothing down and my back went "bang!"  Felt like my spine was slamming down on itself.  My knees buckled and I almost went to the floor.  Caught my breath, went back out, did some stretches (not my back. . that hurt too much), and decided to try snowboarding.  Getting on and off the lift was excruciating.  Oddly enough, snowboarding down the slopes wasn't all that painful. . .but the chairlift was bad.  The drive home was extremely painful.  Didn't know if I'd be able to make it without husband pulling over to let me get out and walk around. 

Onc's p.a. wrote a script for a muscle relaxant, and so last night I was actually able to almost sleep through the night.  The two nights previous were bad. . .slept about 3 hrs each night, in half hour stretches. 

Today was much better.  I can't imagine how you have lived with a bad back your whole life.  And remained active!  Wow. 

Your comment about being a turtle struck me.  I've always considered myself a turtle as well.  It was always so darned frustrating to hear about how quickly everyone else on the board reached PCRU.  That said. . .I consider myself very lucky.  I'm still pretty healthy (compared to most folks) and have a (mostly) fun and active life.  Got an e-mail this morning that one of the guys in the local BMW riding club dropped dead of a sudden heart attack yesterday.  About my age, a little bit older.  You just never know. . .

Marnie

[PhilB]

Congratulations Marnie on the PCRU.  Sorry about the back though as it really is horrid - I damaged mine a few years ago when I accidentally surfed a concrete storage heater backwards down the stairs.  All better now, but it's amazing the things you just can't do if your back doesn't work.

You and Tedsey being PCRU are great examples of the old adage of slow and  steady wins the race.  I was MMR in 3 months, but am still waiting for my fourth log after 5 years.

[TeddyB]

Great news Marnie! (Not the ruptured disc of course, hope you get well soon)

[Marnie]

PhilB. . .I am trying to get a picture of that in my head.  Not sure what a concrete storage heater is exactly, but the backward surfing brings up an interesting image.  Ouch. 

[Susan61]

Great News on your PCRU.  I have not been around lately with taking care of my elderly  mother and her CML etc.  In the meantime I also have degenerative disc disease.  Having severe pain in my sacrum area.  I have not been able to sleep in weeks.  I sit with a heating pad on the tailbone, then moving it up to my neck for my bad Arthritis of the neck.

I also start getting my Ortho-Visc shots in my knee this week for the bad knee.  When my back goes out, I use a rib belt to keep it secure until it heals up.  Hope your getting better.  Was not sure what they do for a ruptured disc? I never got my back checked with all the episodes where my back went out on me, but it felt a lot like what you just described.

Take Care

Susan

[PhilB]

Hi Marnie,

The storage heater was basically a slab of concrete weighing something like 150 or180 lbs, in a smooth metal case, with heating elements running through it.  You heat it up overnight on cheaper electricity and then it gives off the heat slowly over the course of the day.  I needed to remove them from the house when I put central heating in and I stupidly tried to get one downstairs on my own, going down backwards, lifting it down a step at a time.  About 2 steps down it fell back onto the stairs and started shooting on down like a sledge.  I had about half a second to choose between being run over by it or jumping aboard for the ride.  The ride was pretty impressive and I might have got away with it had it not been for the wall at the foot of the stairs.  Ouch indeed.

Hope your back is feels better soon.

Phil

[GerryL]

Hi Phil,

Sounds like you could have been a competitor for the Luge at the Sochi Olympics.

[PhilB]

Well as we get so little snow here, it really is the only way we can practice!

[Marnie]

I hear the guys from Jamaica have a good time with the luge.  Surely you Brits have got more snow than Jamaica!  I was in England during January many years ago.  Not much snow, though pretty cold, as I recall. 

My back is slowly healing up.  Today on my 50th birthday (see Billie. . .I don't stay 47 forever) I'm not quite walking around like a 90-year-old, though I sure felt like it last week.  I'm hopeful that I will be able to use my remaining 2 ski passes. . .I'll stay away from concrete heaters and crazy guys that ride them down the stairs. 

[reedgirl]

HaPpY HaPpY BiRtHDaY Marnie....here's to life, skiing, bad backs, CML, and a great support group!!! Hope you had a fantastic day and the back is healing enough for you to really celebrate it up!!!

Audrey

[PhilB]

Happy Birthday.  I hope you had a great day, preferably with a large, moose-shaped cake and several glasses of something fizzy.  No snow at all here at the moment, but plenty of opportunities for water skiing as half the country seems to be flooded.  When I started cycling to the station a few months ago I read an article which said on average in the UK you'd only get rained on whilst commuting on your bike 12 times a year.  I seem to be halfway through 2017 already.

[mariebow]

Good news Marnie, sorry for that disk.

[Tedsey]

Happy belated Birthday Marnie and many, many, many more until you are old and gray!  Hope your back is healing fast! 

Teds

[janekaye]

Hi Tedsey,

I don't post often these days, but thought I would share with you briefly my experience with dosage.  Dx in 2008, after about 8 months on Gleevec, I had to change to Sprycel because of many drug-associated issues.  My doctor was not thrilled, but I insisted and went to Sprycel 100mg.  Turned out to be the perfect drug for me, despite minor side effects that continue even to this day.

I had some minor PE over the next year, but my tests were going great, approaching PCRU.  I decided to go see Dr. Cortes more than 3 years ago, just for a second opinion bc I wanted to reduce my Sprycel dosage.  I had already been to Johns Hopkins in Balt.  At any rate, long story short, I had a bunch of tests including another bone marrow biopsy.  When I visited with him the next day, he told me to immediately drop dosage to 50mg which he considered the appropriate dose for me at that point.  I did so as soon as I returned home.  Approximately one month later I was PCRU and thankfully have remained so since that time.  My onc was very much opposed, so I switched to a new onc in the practice who miraculously had done a two-year fellowship with Dr. Cortes.  Everything happens for a reason, I've come to believe.

I hope you can lower the dose soon. I have had no serious PEs, but also take 80mg Lasix daily to keep them at bay.  I know when they're building up even slightly, so get myself a quick chest x-ray to be safe.

Best of luck!

JK

[hannibellemo]

janekaye,

So good to hear you are doing great!

Marnie,

Happy belated birthday!! What crazy thing did you do to commerate the day?

Pat

[Marnie]

Did do anything too spectacular.  Husband made fondue and we had a candle light bread and cheese dinner.  I was still gimping around from  blowing out my back, so I was feeling old and crotchety.  And wrinkly.  And old.