17 replies to this topic

[JoshLee]

Hey Everyone,

        I just had an incredibly rough morning. I woke up realizing that I am so sick of having CML being the first thing that comes to my mind when I wake up and the last thing that I think about before I go to bed. I think I am feeling this way because my PCR has been stuck for so long. I am at like 1.3% IS and I have CCyR, but I basically get the impression from a lot of the papers that I've read that I am probably waiting around to lose it. Maybe I read too many papers. My doctor thinks I should stick with Tasigna and actually, when I "asked the experts" for the National CML society, they all basically said that same thing. That there was no scientific data to support that switching to Sprycel would do me any good. I feel like a sitting duck. I can't do anything to help my medicine work better and it's very depressing to me. I try to have hope, but looking at it, I can't see my PCR moving, when it really hasn't moved at all in about a year and nobody has any idea why. I am sorry to be depressing, I was just hoping for this to work better and I am scared. I feel like I would be able to sufficiently put this out of my mind if I was MMR or CMR. I am a goal oriented person and this is hard to stomach. Thanks for your help. -Josh

[Tedsey]

Josh,

I understand how you feel.  Every time I read another is PCRU or MMR, I feel so sad (I mean, I am happy for those who achieve it, but just scared for myself).  I have been dx 2 years and 8 months.  I am on full dose Sprycel.  The only milestone I met was CCyR at around 1 year.  Things moved along quickly with Sprycel after 3 months (I was first on G, then switched because PCR was still high and I stalled 3 times in a row).  But that is pretty much all I got on Sprycel.  My PCRs crept down slowly, but recently the last two PCRs stayed the same.  I get scared too.  Everything I read puts me into the "doomed to progress" category.  How long have you been dx?  I cannot help but think that I have had almost 3 years.  The disease is supposed to progress in about 5 (without drugs, but if the drugs don't work...).  I like to think I have more time, and I don't do anything to prepare (I have two toddlers who will lose their mommy early).  I just can't until I get there.  Anyway, I cannot help but think what I should be doing with the short time I have left.  It is overwhelming emotionally and, like I said, I do nothing.  I also feel like a sitting duck.  It is so hard to just "live" when you have this timebomb inside you.    The odds a SCT really working is still very low.  Also, I am not very young.  I don't know if it is worth all the pain and suffering for a few more months, if I get that. I am trying so hard to find peace while living.

I wish you peace and I hear what you are saying.

Hugs,

Tedsey 

[JoshLee]

Hey Teds,

     I will be 19 months post dx on July 5th and 17 months post beginning tasigna. Yeah, I can't make any sense out of it. I don't have a mutation....So what's the hold up? Am I absorbing the drug poorly or what? I definitely feared being a poor responder and it looks like that fear became a reality. I have an awesome girlfriend who I love very much and I really hope to be around with her for a long time. I feel like maybe I shouldn't have ever read anything about CML, its not like it has helped me in anyways. I am scared to switch to Sprycel. Can switching to a different TKI cause you to progress or mess things up?

[Trey]

No one knows how any individual will respond to each TKI drug.  The only available process is trial and error.  There is also no precise definition of when a switch should be made, just general guidelines.  And all 3 TKI drugs are approved for first or second line use.  You meet the guidelines to either switch or not, so it is up to you.  If you are going to continually stress over the issue, then the only way to resolve this is to switch to Sprycel and see what happens, as I see it.  There would seem to be a potential for improvement, but unlikely any negative response issues. 

[JoshLee]

Thanks for the replies. Thanks for the advice, Trey. I always appreciate your level headed responses. I've been dealing with the stress of this well lately, it's just sometimes I think about all of this and it is so overwhelming. I am still a student, I am not married (yet ), I want kids, the cost of the drugs is astronomical, when I finally get a job will I be able to get insurance?, I want to be a home owner, I love my career and want to keep it. I just think about all of these things at once sometimes and get tired of feeling like a mosquito with an impending hand of doom hovering over me. I just needed to vent and get some responses from some people that know these pressures.

[TeddyB]

Sorry to hear you are feeling down Josh, i hope your next pcr improves.

Would an increase in dosage be an alternative to try before trying Sprycel, if you feel uncomfortable switching?

I would listen to Trey though, a switch to Sprycel would seem the next logical step if you feel the results arent up to par.

Also, if Tasigna loses its effect over time, and even Sprycel doesnt work, maybe a trial with Ponatinib or Bosutinib?

I think there are still many options before considering a BMT/SCT.

Hope you are feeling better as well Tedsey, the drugs seems to work for both of you, but not optimal, i hope that changes, and remember, new developments in drug therapy happen for each day you hold on, so please, dont give up.

I know i am new here, and just reached CHR a few weeks ago so i might not know exactly what you guys are feeling now, but after reading somewhere that survival after 10 years was now around 90% i feel pretty optimistic about the future, being "only" 36 years old, and with to small kids i feel i have no other choice than to be an optimist. But i am counting on you to cheer me up if i get depressed sometime in the future

Hope the both of you are feeling better, and that your pcr`s improves soon.

[LivingWellWithCML]

I agree with Trey - if it were me, I'd probably make the move to Sprycel ... especially if CML consumed my mind day and night (and I totally know that feeling, Josh!).

Keep your head up though - you are CCyR, your disease does not appear to be progressing, and you have options.  I know it's hard to look at the positives, but I've been working on that very hard on my end and I'm starting to turn the corner and accept the fact that I will be living with CML for quite some time.

Be well buddy .... we're here for you!

[pamsouth]

JohnLee,

I think sometimes we let CML become our whole life, instead of living. 

I was diagnosed in 2005 and have been on Gleevec every sense.

My world got turned upside down last fall when my onc gave me a big push to change to Tasigna.  Yep it was like reliving that first year of being diagnosed. 

My prev onc, says,  Newer, Better, drugs.   That is plain crazy in my way of thinking, not enough data, they all have their demons, and who knows how one medication work on for each individual. 

My PCR had went up last year, but when I called the lab they had changed over to the IS scale.  In fact there were others on the board, where their PCR took a leap up, same problem, the labs had changed.  Interesting I also got a letter from Novartis they weren't giving out any more co-pay assistance for Gleevec, only Tasigna.  I talked with my primary and she knows well, how the drug industry works. Newer isn't always better.  My Prim Doc says she likes to wait until new drugs are on the market awhile, also some drug makers are always trying to push drugs to the newer patents.  None of the drugs are a cure.  CML is only controlled.  Even if you were undetectable  you would still have a million plus leukemia cells.  What about your lab counts and quality of life. 

Long story, short, I have been CCYR  for almost 7 years and doing well, until I started freaking out about my labs that were mailed out of state and supposedly took a sudden hike.  My PCR were suppose to be undetectable for about  5 years, but the new onc said that couldn't be because my FISH were positive.  I do have all the labs for PCR, FISH, etc. and yep that is what they say.  Anyhow the new onc did a test to see if I have any other mutations and no I did not.  So no one really knows why the GenPath lab of N.J. came up with PCRU, in fact Gen Path would rerun the PCR and they couldn't figure why I had a PCRU with a positive FISH.  Neither can the new lab and new onc. 

Anyhow I saw my primary today.  I said it has been almost 7 years since diagnoses and as long as I am CCyR, and my other counts are close to normal and I still have a quality of life, outside of some old age (64 years old) I am one happy camper.  I said otherwise my life becomes about cancer, doctors, side effects, labs, and then what is the point.  Nope (only speaking for myself) I am happy to be in a controlled ranged.  After speaking with my primary today I am perfectly happy where I am!  Beside I get tired of feeling like an experiment. We are not guideline statistics we are individual that need our med's specialized for just the individual.  I not so sure it is such a good ideal to keep comparing ourselves to each other, because if we don't match, we are upset thinking we are not doing well. 

To bad they don't do studies with low dosages and CCyR stability.  Controlling CML with a quality of life until a cure comes about.  I read one post where they think if you can have a deep response you might kill the ancient stem cell that causes the whole mess.  However I am along the line of thinking it is much more complicated then that.  Would the bone marrow produce another defective stem cell, I think so, and why.  I don't think these drugs are even close to the cure.  But until the cure, I am happy with CCyR and a reasonable quality of life at 64 years.  If my new onc decides to change our original plan, my primary and I have a back up plan. 

PamSouth

[GerryL]

Hi JoshLee and Teds,

On Jerry's site there is a lady there who writes that she has had CML for 21 years and has only just reached MMR on Ponatinib.

[Marnie]

Hey Josh. . .

Hang in there.  You will reach a point where you are able to stop thinking about cml constantly, though it's always there in the back of the mind.  It took me almost 3 years to reach CCyR.  Switching to Sprycel helped, but my numbers have continued to fluctuate.  I understand your frustration.  Wish I could tell you how to alleviate the stress, but I haven't figured it out yet, either.  Trey's advice seems sound.  Stress is a very bad thing, and you need to figure out how to address it.

Best,

Marnie

[Pin]

Hi Josh, I can't offer any advice as I've just hit a wall too (although I am mmr, and this is only my first plateau result, which makes me feel dreadfully ashamed and guilty of  how I feel ).

I don't need to tell you this as I know that you know, but we do now know that CCyR is essentially equivalent to an MMR in terms of progression anyway, but I guess it's  hard for us to accept that because of what we all learned about our condition in the beginning. Like Dan, I am coming to terms with the fact that there is just no endpoint or final goal to this, this is what makes our disease so challenging mentally - I think I am somehow equating hitting a certain milestone with "cure" or "can now get on with life" or also that it will help me for having kids, but it's just not true - even if I got there, it's still no guarantee of anything, the next test might show something different, and that is something I have to accept. I do think it is worth you trying Sprycel though - if it can get your numbers down a bit and helps you cope mentally, then that is just as important for your long term health, regardless that the data shows you are at low risk for progression with a CCyR.

[tiouki]

@ Josh Pin and Ted

Hello, sorry to see that your numbers reached a sort of plateau

I think there is not much worry to have though : you have reached CCyR, which should prevent disease progression. When Ted said that "the disease usually takes 5 years to progress" it is not true at all anymore when you are under a TKI treatment.

Also, I believe that for many people they reached some plateau and after some time the numbers started to drop again, even though it can take some time, so this is a thing to have in mind also.

Good luck to you

Pierre

[katiekatjacob]

Sorry to hear about your morning! Mine has been tough too. 

Praying for ya,

Katie

Message was edited by: Abena

[Trey]

Katie,

You are a shameless spammer.  Thanks to Abena from L&LS for deleting your spam advertising.  You need to go away.

[Marnie]

Instead of a trike, check out the Can-Ams.  They look like fun (Sorry, Josh, for hijacking. . .hope that you are finding ways to lessen your stress!!!)

Marnie

[Happycat]

Josh,

I'm on vacation, but had to post to you. I'm sorry you are having a rough time accepting your response thus far. However, I have to ask you if you have set the right goal for yourself?  Is MMR the right goal?  Or is it really a lack of progression?  And, if so, what wil help you reach that goal, being MMR or CCyR?  Sometimes you need to reframe the goal.

That said, Trey is correct that switching to Sprycel is the only way you will know if it will work better for you than Tasigna. You might want to consider it just for the peace of mind aspect, that you tried all you could.

Regarding all your other life goals, I do hope you are not allowing the CML to derail them. Please do not put off your goals until you reach MMR.  Your other goals are not all that dependent on CML.  You can still get married, own a house, get a job and even have kids. (See Hans on that one.).

The point I'm trying to make is that you should live your life now, and don't wait until the CML is "under control". You deserve to live your life with all those happy goals obtained. Don't let the fear of the future hold you back.

I will also say this regarding thinking about CML all the time. I don't. The reason I don't?  I've got too many other things to worry about!  My job keeps me busy, then there is all the stuff I need to do for my kids, plus dinners, grocery shopping, school work, etc.  Mostly though, it's the kids needs that occupy my mind the most.

My point is if you obtain some of those other goals, you too will have less time to worry about CML.  I'm sure you will have a long and happy life ahead of you.

All my best,

Traci

[pamsouth]

Pin,  I do believe you hit the nail on the head. 

>"I think I am somehow equating hitting a certain milestone with "cure" or "can now get on with life" or also that it will help me for having kids, but it's just not true - even if I got there, it's still no guarantee of anything, "<

I saw my primary doctor last Monday, we talked about all this stuff.  I would say she is in her mid fifties and she is one smart doctor with lots of wisdom through out her years of experience. I wish she could be my onc.  Anyhow her husband is a patholgist at one of the hospitals, several miles from me, but I do not go to that one.  She is going to talk to her husband about my prev labs from Gen Path and when they switched over to the IS, she is also going to discuss my new labs with my new onc with her husband. Thank God for Primary doctor's they sort of pull it together and make common sense out of it all!!

Sorry got side track, my Primary Doc is totally on board with what I am thinking in ways of treatment plan, labs, quality of life.  We agreed these TKI only keep CML in control it is not a cure.  It is more important to stay in a range and tweak the dosage and other med's your taking with your age, and your lab counts and your life style.   I am good with, that whether is CCyr or PCRU, Or whatever is working for me, don't sweat the guidelines.  I am thinking the first studies and theories about CML & TKI have changed just a bit.  Doc also agreed with me, if I am staying in a range, instead of jumping on a new drug, at least wait unit the new drug has been out for at least a few years.  Remember in the old days drugs were studied much longer then these TKI'S.  She said sometimes the drug sales people come in to  talk to her, with a newer better blood pressure pill, but they are not necessarily any better.  they are pretty much the same as the 5 basics they just tweaked it a little to get a new patent.  I think it was 5 basics.

I am so glad I have a wise primary, that is just not pushing drugs for the patent.  Got to tweak for the individual.  She did say in the old days we were taught to go to one extreme, then we went to the opposite extreme, hopefully most of us will go down the middle.

Just stay in a range where you can still live your life, and your other labs counts are not horribly affected, and you have as less side effects as you can have.  To me it is not much fun living with continued side effect.  I think for most drugs the side effects lighten up by themselves or lowering the dosage.  However it seems we still have guideline onc who want to stick with the guidelines. I felt sorry for the lady on a clinical trial and should could only lower or Sprycel to 80mg, when she might do well on Sprycel at 60, 50 or 40, whatever works for her.  I keep say we got to keep tweaked for us and not comparing or thinking we are going to reach the same milestone as someone else. 

PamSouth