47 replies to this topic

[gerry]

Gerry my doc will be testing me monthly but if it rises that quick I would hate to be right in the middle of my pregnancy. He wants me to get pregnant as soon as I go off tasigna, but I'm wondering if waiting a month to see if I lose response quickly will be an indicator of wether or not I could make it through the whole pregnancy without interferon? Awwwww the tangled webs we weave:(

Though I know it is hard, I guess the decision is how much do you want another baby and what are you prepared to go through for one. You have to assume that the CML will more than likely show up, if it doesn't that is a bonus. CML doesn't always show up in the first month anyway, so that may not be a good predictor of whether it will return or not. What's the old saying - hope for the best, plan for the worst.

[gerry]

AllTheseYears, once you've got back to PCRU are you able to lower your dose to maintain PCRU? Not sure if that might help cost wise while still maintaining your health?

[kat73]

This is so discouraging.  To be undetectable for 5 years (in JrsBoo's case) and 14 (sheesh, 14!) in AllTheseYears' case and then for the CML to come roaring back like that - I just don't understand it.  The takeaway for me is, it doesn't seem to matter beans if you get to undetectable - you're either in the magic group that can quit from the very beginning or you're not.  So much for the stem cell exhaustion theory!  Everyone's all excited about immunotherapy, but first they'll have to show that the stem cells are annihilated - otherwise, it's just an easier way to treat this stupid chronic disease.  I agree with Trey, I'm looking for ABL001 to be an improvement.  If we have to do without a cure, at least we could lessen the side effects.  How sad to hear of how good JrsBoo and ATY felt after being off the TKI!  A glimpse of themselves from the old days, from the other side of the looking glass.  I'm just so angry and frustrated.  Trey, you call CML unpredictable.  But I thought we had all these assurances that hitting CCyR meant we were safe from progression, or that once you're MMR you have it made in the shade - things will stay the same (bad enough, but still)  If you've been undetectable for 10 years, and your number starts coming up WHILE YOU'RE STILL TAKING THE TKI isn't that proof that CML in the age of TKI's is actually no different than all the other cancers after all - they eventually all become resistant to treatment? 

[AllTheseYears]

 

AllTheseYears, sorry about your loss of PCRU

 

While In the Medicare Donut Hole, Consumers pay:

2016: 45% for brand-names and 58% for generics

For 2016, the Medicare Donut Hole will be $3,310 to $4,850.

 

Once you exit the Donut Hole for the year (likely on the first fill of your Rx), and enter the Catastrophic Phase of Medicare, from then on you will pay 5% of the Rx cost for the remainder of the year.

 

Medicare is a Federal program and a state's drug parity law plays no part in it.

 

As of August 1, Sun Pharma loses it's six-month sole proprietorship of a Imatinib/Gleevec generic.  There should be a substantial drop in the price of the generic.  

 

Buzz 1: Yes, my estimated yearly Gleevec cost of $10,000 to $12,000 takes what you said into consideration.  Wasn't sure about the drug parity; thanks for clearing that up...but the high cost still depresses me.  Hope you're right about the "substantial drop" in generic pricing August 1. Meanwhile....

[JRsBoo2]

This is so discouraging.  To be undetectable for 5 years (in JrsBoo's case) and 14 (sheesh, 14!) in AllTheseYears' case and then for the CML to come roaring back like that - I just don't understand it.  The takeaway for me is, it doesn't seem to matter beans if you get to undetectable - you're either in the magic group that can quit from the very beginning or you're not.  So much for the stem cell exhaustion theory!  Everyone's all excited about immunotherapy, but first they'll have to show that the stem cells are annihilated - otherwise, it's just an easier way to treat this stupid chronic disease.  I agree with Trey, I'm looking for ABL001 to be an improvement.  If we have to do without a cure, at least we could lessen the side effects.  How sad to hear of how good JrsBoo and ATY felt after being off the TKI!  A glimpse of themselves from the old days, from the other side of the looking glass.  I'm just so angry and frustrated.  Trey, you call CML unpredictable.  But I thought we had all these assurances that hitting CCyR meant we were safe from progression, or that once you're MMR you have it made in the shade - things will stay the same (bad enough, but still)  If you've been undetectable for 10 years, and your number starts coming up WHILE YOU'RE STILL TAKING THE TKI isn't that proof that CML in the age of TKI's is actually no different than all the other cancers after all - they eventually all become resistant to treatment? 

Yes, the shock was bad.  I only really got 2 weeks of my old self.  But boy did that feel good.  I am afraid I am one of the super sensitive ones, and the Sprycel actually kicks me into disabled mode, regardless of the amount.  

 

I am super lucky, my husband works for the railroad and between that amazing insurance and the medicaid I get for being disabled, and the tricare that kicks in alongside that, I am completely covered financially other than a $50 copay once every 3 months.  It wasn't always the case, and I had to declare bankruptcy early on.  

 

The emotional rollercoaster has been a blast too!  I have lost so many friends, who just can't handle the chronicness of all of this.

 

I wouldn't wish this diagnosis on anyone.  

 

Sorry, wish I was more upbeat, but this setback is just too new.  And it sucks.  A lot.

[kat73]

I recognize the feeling so well.  I am SO sorry.  I won't sling any positive stuff here, I know you're telling it to yourself and trying to feel it.  Just remember, from other setbacks, you'll rally and cope and things will seem better.  Just takes time.

[JRsBoo2]

I recognize the feeling so well.  I am SO sorry.  I won't sling any positive stuff here, I know you're telling it to yourself and trying to feel it.  Just remember, from other setbacks, you'll rally and cope and things will seem better.  Just takes time.

Thanks.  I am on the whole an annoyingly upbeat person.  This will all get better.........or rather, back to where I was.  Hopefully nothing got too screwed up with this resurgence.  

 

I am happily painting little tiny watercolor squares again.  

--Caroline

[r06ue1]

This is so discouraging.  To be undetectable for 5 years (in JrsBoo's case) and 14 (sheesh, 14!) in AllTheseYears' case and then for the CML to come roaring back like that - I just don't understand it.  The takeaway for me is, it doesn't seem to matter beans if you get to undetectable - you're either in the magic group that can quit from the very beginning or you're not.  So much for the stem cell exhaustion theory!  Everyone's all excited about immunotherapy, but first they'll have to show that the stem cells are annihilated - otherwise, it's just an easier way to treat this stupid chronic disease.  I agree with Trey, I'm looking for ABL001 to be an improvement.  If we have to do without a cure, at least we could lessen the side effects.  How sad to hear of how good JrsBoo and ATY felt after being off the TKI!  A glimpse of themselves from the old days, from the other side of the looking glass.  I'm just so angry and frustrated.  Trey, you call CML unpredictable.  But I thought we had all these assurances that hitting CCyR meant we were safe from progression, or that once you're MMR you have it made in the shade - things will stay the same (bad enough, but still)  If you've been undetectable for 10 years, and your number starts coming up WHILE YOU'RE STILL TAKING THE TKI isn't that proof that CML in the age of TKI's is actually no different than all the other cancers after all - they eventually all become resistant to treatment? 

 

Don't get discouraged Kat, immunotherapy is probably the cure that we are seeking, seems to be working well with ALL patients so far, just need to wait for that CML immunotherapy to be discovered.  

 

http://www.lls.org/t...6ue8aAkJs8P8HAQ