19 replies to this topic

[Dina]

Hi there,

I had an appointment yesterday with my doctor and I've asked him some open/specific questions this time,

my previous appointments with him were more concentrated on some other issues I had at the very beginning (like blood work and things like that),

plus he had some extra time yesterday(usually he runs out of the room so fast, they are always in some kind of a hurry).

My question: How long do I have to take the Tasigna? His answer: Forever, this medicine does not cure the CML it only controls it.

My question: If and when I reach PCRU and if I maintain it for at least three years, can I then consider of stopping the treatment?

His answer: There is no much data/evidence when stopping the treatment that the disease wont come back, so I do not recommend it.

I have a patient now who just did that and he relapsed. But it will come back, I know it will.

My question: Can I then ever consider to at least lower my dosage?( currently I'm taking 600mg)His answer: No, until there is sufficient data/evidence that

recommends that.

My question: How long can I live with the CML? His answer:I really don't know,certainly 20 years is not enough for you since you are still young,

we really don't know, we can only hope that your normal life span wont be shortened by the CML. Just don't know. Keep in mind that only a decade ago

patient who were dx with the CML had about only three years to live.

The feeling I got from my doctor yesterday is that he really does not know what the future holds,

and I can't beleive it that this is my life we are talking about, only 4 months ago I was perfectly healthy, it's just so hard.

[Judy2]

Hi Dina,

I know this is very hard but please remember you have lots of friends here who will give you lots of information and support. Vent whenever you need to, I find that really helps. I was dx in May and my onc said cml won't shorten your life. Most oncs are saying we can live 30 years and new drugs and possibly a cure are in the not too distant future. It is very scary to be dx with a chronic cancer. I also was healthy before last Feb. then was dx with a life threatening autoimmune disease and then 3 months later dx with cml, so I know just how you feel. Everyone says the first year is the hardest, as time goes on we won't think about it so much. Keep asking questions, everyone here will help.

Hugs,

Judy

[scuba]

Dina,

No worries, you are going to be just fine.  You will die of something else a long time from now and never from CML.  In fact, the only issue to worry about are side affects and "did I remember to take my medicine". 

A few years from now - there will be breakthroughs regarding the CML stem cell that will provide a functional cure.  There is likely to be advances in the T-cell method as well that will enable our own bodies to destroy CML so a TKI would no longer be necessary.  All of this is coming

And finally - I would recommend that you set time aside to visit at least one of the top specialists in CML in the country after about six months of your current treatment to get an assessment and have your detailed questions properly answered.  Your current doctor will likely only repeat the standard dogma they all have to say.  It's too risky for them to say otherwise.  The specialists, however, are the ones who invent the rules, publish the papers and influence direction of clinical treatment.  They often prescribe for their patients what the latest data reveals as best practice long before it becomes standard practice by others.

Hope this helps.

[CDW]

Hello again Dina,

I found when i got to the six month mark things became a lot clearer for me. No particular epiphany, simply realizing I was probably going to be ok, the meds were doing their job and that there was no real reason why my life expectancy should be drastically different from anyone else. I found as i transitioned from my 20s to 30s, I realized just how precious life is, especially when you start to hear about people of a similar age getting sick with nasty illnesses such as ours. In a strange kind of way I look at CML as a gift - if i was going to get a life altering disease I'm glad i got this one; especially with the amount of research and recent advances in this area.

Per Judy's comments, many CML specialists believe we'll die of something else and 14 months into treatment I can safely say i rarely think about CML (except when i'm on here and visting the onc). Consider that in the long run, all you have to do is take some tablets and take care of yourself. That's a real blessing compared to the alternative 15 years ago.

Initially this disease was a bitter pill for me to swallow - Type A male, demanding job and keen adventure sports enthusiast. The positive is I'm now healthy again (i felt rubbish at dx and for 3-5 months after), I'm responding well to the meds and living a very normal life.

It's ok to feel angry, disappointed, upset, and it's also hard to believe it's happened to you at times. But, even thinking pessimistically about the long term, there are people who have been on Gleevec for 13 years. Just think what advances can be made in 13 years towards a cure or even better meds. And on the positive side, tasigna will likely work for you and I for 25-30 years - just think what medical advances can be achieved in that timeframe.

Enjoy life and focus on your wellbeing and good quality family time - we could get run over by a bus tomorrow

Chris

[Dina]

As I write this my eyes are filled with the tears, I just can't thank you enough for all of your feedbacks,

I'm so glad that I've decided to join this site, you guys are great. I've learned here more about the CML then from my doctor.

Can't wait for that time to come for me as well when the CML won't be on my mind when I open my eyes in the morning,

this felling that I still have is just awful.

[LivingWellWithCML]

Dina,

I thought I'd never get to the point where I could wake up and proceed with my day without the anxiety of CML.  After roughly 9 months of treatment, however, I can honestly say that I go pretty significant stretches where CML is literally off my mind during the day - and it's a great feeling.  You'll get there soon ... especially knowing how amazingly effective Tasigna is at beating down this disease.

Hang in there!

[janne]

Dina,

I am glad you are finding consolation and direction from these BIF's (Best imaginary friends) we have here. I too have learned a great deal more here than at my doctor's..and that is not a slam against him at all. I think the world of that man, he is an incredible human being and he greatly cares for his patients. But what we have here are patients who live in different areas of the country who are getting more information either from their physicians that we are not getting, in the way of optimism and confidence or they have had specialist visits like Michael with Dr. Cortes who are getting way better prognostic data just because of the studies that Dr. Cortes has done on the numerous patients he sees. I can't help but get excited about that. I do not look at my life the way I did a year ago (now 3 years into the fog of TKI's). I am currently in the process of composing a letter to my doctor to discuss with him some of these quality of life issues raised by Dr. Cortes with his evaluations so that we might discuss them on my next visit. I too get that "run out of the room" kind of treatment, but once or twice I didn't. So I need something to hit him with when he walks in the room, because I just cannot think that fast !!!! and it will be, "Did you get my letter? " We WILL discuss some of these issues.

Thanks to all and their contributions. Look foward to any articles posted elsewhere with links on this site supporting lower doses, etc. Thanks all !

[Happycat]

Dina,

Your onc is rather cautious in his responses.  He is sticking only to what is known after 10-15 years of TKI therapy, and declining to prognosticate about the future. Sounds like he's pretty cautious with treatments, too. He'd like to see further studies before recommending anything outside the current treatment guidelines. That's not necessarily a bad thing.  It is just that his responses didn't leave you with a warm and fuzzy feeling. 

I think you did exactly the right thing in bringing the conversation to this forum. That way, you can get lots of different perspectives to round out the picture.

Traci

[tiouki]

Hello Dina,

I'm surely not a doctor (even though I'm gonna start a PhD so i'll be sort of a doctor ) but i will try to answer to some of your questions

My question: How long do I have to take the Tasigna?

A priori foverever is the right answer, even though 2 things : if you respond particularly well you might be able to try to stop it. And as scuba said there is a lot of reasearch I am also quite confident that new drugs/treatments will arise and lead to more and more cure

My question: If and when I reach PCRU and if I maintain it for at least three years, can I then consider of stopping the treatment?

Yes you surely can. My onc, Pr Rousselot, organized the STIM study in France (stop imatinib study) : for patients with PCRU for more than 2 years they stopped ITK and about half of them didn't relapse. I recommend you to read the abstract of the article on this website which gathers all scientific articles : http://www.ncbi.nlm....pubmed/20965785 . They also showed that those who relapsed responded well to gleevec after their relapse so it is safe to try to stop it. But remember that only a few percentage reach PCRU (10% with gleevec approximately). They think that it should be more with 2nd generation drug in first line treatment, which is our case I believe

My question: Can I then ever consider to at least lower my dosage?( currently I'm taking 600mg)

Here again he is very careful, actually many specialists think that after some time you  can lower the dosage. Apparently there are some people here that are treated with only 20mg sprycel and it does works. TKIs especially 2nd generation are very efficient even at lower dosage.

My question: How long can I live with the CML?

By now you will probably not die from CML. The worst case scenario is the blast crisis which is very very unlikely to happen when CML is well controlled by TKIs. The other bad scenarios are : 1) a mutation which makes your drug inefficient 2) adverse effects of the drugs.

For the 1) there is only one mutation that is resistant to the three TKIs (T351I) but new drugs like ponatinib can handle it. Some other mutations may cause resistance but they are very rare also. About 2) I think I read that you can tolerate well tasigna so there won't be any problem Plus you can still lower the dosage or change to sprycel.

I think all of this should make you feel better, at least it works for me   Thanks to these wonderful drugs we will all have almost normal lifes ! Don't worry Dina

[CallMeLucky]

Hi Dina,

As tough as your doctor's answers may have been to hear, they are accurate based on what is known today.  The doctor's job is not to indulge our fantasies - they need to keep things realistic and not speculate on what ifs.  Keep in mind that historically, cancer in general has been very difficult to treat.  There have been many times doctors have speculated that they have something effective, only to find it didn't pan out.  We are very fortunate with TKI drugs as they appear to have a durable response for most patients for many years.  It is ok for us to be hopeful an it is nice when the doctor is encouraging.  If you really look at what he said, there was nothing that most cancer patients wouldn't be content to hear.  We all want a cure and hopefully we will get there in the future.  Not so many years ago things were very different so I think that should be very encouraging.  But there is also the reality of where we are today, not to be confused with the most cutting edge research and trials that have not been vetted out yet.  We can speculate and be encouraged, but treatment needs to be based on what has been shown effective and only deviate from that when you have no choice.  I think too often we fall into the trap that doctors cringe about.  We go out to the world wide web and we start reading, and talking with a few people and then we start to come up with hypothesis and theories and we begin to take them as reality.  Just because CMLGUY922 says something doesn't necessarily make it true or at the very least it doesn't make it true for everyone.  We should try to avoid the tendency to compare what is the proven reality of today with the way we want things to be.  The future looks pretty good for CML patients.  The drugs we have today will likely keep us alive our normal life span (that was probably the only thing your Dr was too conservative on.  There are studies that have looked at life span and think they should be normal for majority of us).  Obviously no one has a crystal ball and we may find out that at 20 years IRIS patients start growing tails.  I think the pace of medicine is very promising and while we have to live in the reality of today it is very reasonable to believe that in the years ahead there will be further advances that will benefit us.  For today I think it's not about getting what you want, its wanting what you have.  (At least for me that is how I am trying to look at it, although some days it is hard).  I get frustrated with the "it could always be worse" line of thinking, but the reality is that it could be much worse.  You never know when the next thing life is going to throw at you is going to come along.  So try to be ok with where you are, I think we all have to do that to the best of our ability.  Wars are not usually won in days or weeks or months, it is usually many years...

*BTW - CMLGUY922 is not a dig at anyone on this board, it was a joke I had with my doctor about how the Internet can be both a blessing and a curse.  There's great information out there, but there is something blissful about ignorance as well.  I guess the goal is to strive for a good balance.

Hope you feel good today....

[tiouki]

hehe I feel a little bit like CMLGUY922 right now .

I agree with you call me lucky, especially on the way we should try to consider things. But still,when you say "As tough as your doctor's answers may have been to hear, they are accurate based on what is known today", I think that today's scientific data is a little bit more optimistic than what Dina's doctor said

I mean, this

"My question: If and when I reach PCRU and if I maintain it for at least three years, can I then consider of stopping the treatment?

His answer: There is no much data/evidence when stopping the treatment that the disease wont come back, so I do not recommend it."

Is not true considering recent scientific studies.

And that is a bit excessive too

"My question: Can I then ever consider to at least lower my dosage?( currently I'm taking 600mg)His answer: No, until there is sufficient data/evidence that

recommends that."

Pierre

[CallMeLucky]

Hey Pierre,

I would be thrilled with the idea of stopping drug at some point, and I will be the first to admit that I am not extremely well read in this area.  I'm just a patient, not a Dr or researcher, but to my knowledge there has not been put forth enough data to suggest that stopping drugs is a reasonable goal on TKI therapy.  Aside form the STIM trial, which was based on 100 patients, of which 69 patients relapsed, I'm not aware of any other studies.  Those numbers make it hard to argue her doctor's statement was wrong.  He's correct to the point that the majority of patients relapsed.  I know they are launching a new STIM trial and they are looking at it from a different perspective (i.e. not looking at just CMR but seeing if patients can hold MMR without drugs).  I will be interesting to see where this leads, but we do not know yet.  Also hard to tell what it means to hold MMR without drugs.  Is body really keeping disease under control?  Is it possible that without TKI, MRD can mutate?  All questions that need to be asked and answered.  If there are other studies that show otherwise, please let me know as I would like to read more about it.

As far as lower dosage, again the answer was correct based on where we are today.  The latest NCCN treatment guidelines only call for a reduced dosage in the event of serious AE and in those cases, the spirit of the guidelines is to get back up to therapeutic dosage if possible.  Of course these are just guidelines and some doctors are trying lower dosage, especially with Sprycel since this seems to be quite potent.  But to my knowledge, the doctor was correct when he said there was not sufficient data/evidence to support treatment at lower dosage.  It seems the research is forthcoming and I am looking forward to seeing that, I think we would all be more willing to stay on drugs longer if there were minimal side effects.  But until those studies are published and accepted - her doctor is correct, he's conservative in what he is saying, but he is correct.

[tiouki]

Hey CallMeLucky,

I am probably a little bit biaised because I am lucky to be treated by Dr Rousselot who told me about the latest research. Indeed the published data for stopping ITK is rather limited yet, but published data is always few years late on current studies that are going on and for which results exist but are not presented yet, as you said.

I cannot remember everything that my onc said but I am convinced that he has a very good overview of the disease and the treatments, so I try to share it as much as I can. And he is being quite optimistic. I mean, more than Dina's onc.

He clearly told me that the goal is to be able to stop drugs for as many patients as possible, and that it is safe to try it (in some cases). And he also thinks that even if for gleevec it was an option limited to a minority of patients, with 2nd generation TKIs in first line treatment this percentage will clearly increase. Considering the time since tasigna and sprycel are used in front line therapy, within the next year or so STIM-like trials results will start to appear, and will probably be better than gleevec results. I will ask him next time how are these studies going (preliminary results).

What I mean is that current data is not always published. For instance in my trial with adapted sprycel dose in front-line therapy, that started 2 years ago or so, they get 95% CCyr at 6month and only 1% pleural effusion, which is better than today's data on sprycel.

I believe that other hematologists may have diverging views, espacially since it is recent research. But I just wanted to share my onc's point of view with Dina to give her some kind of 2nd point of vue .

(Sorry for my english I hope it is understandable, it's hard for me to translate nuances )

Pierre

EDIT : http://www.nature.co...nc.2011.17.html  here is a recent article that speaks about the STIM study and some hypothesis (I think it has to be taken "with a pinch of salt" if that's the correct expression but still)

[CallMeLucky]

I think your English is very good, no problem understanding you.  What you are posting is great, it is awesome to see what is going on with the most cutting edge results as they are often very encouraging.  I was only saying to Dina that it would be a good idea to balance the latest buzz info with what is the current course of treatment.  It can be very discouraging, and I know this first hand, to want to go the route of something that you've read about and then have your doctor put the kabash on it.  You start to question good doctors because they are being prudent.  I'm just saying we need to be careful rushing into things until enough information is presented.  There is usually more buzz this time of year because of ASH conference, so I think we will see more published work coming out that may impact treatment guidelines.

I also think there is a cultural difference with doctors in US and doctors outside the US.  Outside the US there seems to be more appetite for stopping drugs.  US doctors seem to be more content with patients staying on the drugs, although I think that is changing, certainly with some of them.  The cost of long term treatment is very difficult to sustain so sadly while there are some doctors who are looking to get people off drugs for benefit of the patient, much of the motivation is likely to reduce cost.  In non US countries where the cost is picked up by the state, it seems to be more prevalent the idea of how do we get people off the drugs.  In US there seems to be some complacency, which is one of the main problems with a third party payer system.

[scuba]

Tioki - I want to emphasize your comment, "published data is always few years late on current studies that are going on and for which results exist but are not presented yet ...".

This is why I strongly recommend that new patients with CML visit an expert in CML who does research and publishes papers.  These specialists such as Drs. Talpaz, Drucker, Cortes, Rousselot are in a position to guide their patients in the Clinic with the latest results YEARS before it becomes part of the official guideline.  Every one of these experts I listed above know each other personally, often collaborate and otherwise borrow ideas and implement strategies for their patients.  Dr. Cortes is so matter of fact about what he prescribes.  I asked him - don't you think I should increase my dose to say - 40mg. - to get a bigger drop in my PCR numbers and he said it makes no difference (20 or 40 or 70).  And he has HUNDREDS of patients on Dasatinib low dose.  He said that it is a threshold response not dose dependent (i.e. more = bigger, faster).  Each patient has a level where they get response and more is not better.  His words, not mine.  He is keeping me at 20mg.  He starts his patients at 70 and monitors.  If no side affects and they get great response, he keeps them there.  If they have side affects (or adverse events such as myelosuppression), he drops them to 20 and monitors.  If they get good response and side affects diminish to manageable levels he keeps them there.  He is very straight forrward about it.

So again - my advice to any new patient in CML is to arrange within six months of diagnosis if at all possible to visit with an expert researcher in the field.  Let them review the treatment program you are on - review your lab results and consult with you.  And - also make sure you primary doctor knows you are doing this and to collaborate with the expert.  My primary Oncologist is little more than a blood taker now.  All interpretation is done by Cortes.  And by me.  I trust Trey's interpretation more than I would a non-expert Oncologist treating CML patients.

[tiouki]

I can only agree with what you say about the balance between the "buzz" and current treatment recommendation

About the US I know that healthcare access is not obvious but I don't really know how things work in details.

In France if you have cancer (and for most other diseases) the state pays for everything. So yeah the goal of stopping drugs is not mainly motivated by the cost (even though that plays a role too).

Some buzz to finish :

-another target for BCR-ABL protein inhibition (rather than ATP binding site), quite exciting from a theoretical point of view, because we could imagine coktails of drugs that target different parts of BCR-ABL  http://www.ncbi.nlm....Leukemogenesis.

-a potential new kinase inhibitor (article quite hard to understand, the exact effect of the drug is unclear to me)  http://bloodjournal....8/1607.full.pdf

-another one that seems to be more advanced than the latter and is similar to ponatinib as it is effective against T315I mutation http://www.ncbi.nlm....ubmed/21481795 . Some information on this page too http://www.deciphera...gs/dcc-2036-cml

[Dina]

Hi guys,

Thanks for all of your comments and support.

Also I want to thank you for sharing your opinions,experience and knowledge, I have to admit that I feel a lot better now.

Scuba, I think you are absolutely right about your recommendation to see a CML specialist at some point,

I will definitely set some time aside and plan on that. Here where I live we do have a Mayo Clinic which is great but there is only

one specialist who sees patients with all four types of leukemia, so I think I should just get on a plane and see a CML specialist only.

When I was reading comments between Call me Lucky and Pierre I was kinda laughing, and the reason is, when I was talking to my doctor,

and listening him and hearing his answers that I really don't want to hear, all of the sudden I said: But wait there are some Italian doctors who are more optimistic

about stopping the treatments and they are more confident about the second generations of TKI's, he then stopped, paused and started HAHAHAHAHAHAHAHA, you really

believe Italians, they are like that about everything.

I couldn't help but not to say anything(I'm from Europe myself, living in the States) So,I said: well that's what they say about You, American doctors, you are way too conservative and cautious about everything, you just beleive in the power of drugs.Then we both kinda started laughing.

I'm so thankful for the medicine we have today for the CML and thank God for it every day.

P.S.  I used to laugh all the time, I really miss it sometimes.

[ChrisC]

Well done, Dina! You are definitely getting the hang of dealing with the doctors. Carry on, you are doing great.

ChrisC

[Susan61]

Hi Dina:  I am just getting back on here, and still having trouble typing from my hand injury, but I can remember when you first signed on here as a new CML patient, and it was not that long ago.  Do not rush to cut back or stop your medication.  You have to give it a chance to work first of all, and be sure you stay at a good level with your counts etc.

If you are not very sick from your TKI, then just take it each day and live your life.  I have been asked constantly why I have not tryed to cut back or stop my Gleevec after all these years, and I say WHY?  Its doing its job, and the side effects I get are tolerable.  I feel very blessed, and this Monday Dec. 12th is 13 years since I was diagnosed with CML.

I do not even question when I can stop it.  I think your ONcologist has given you good answers to your questions.

I do believe in seeing a CML Specialist, and what I mean by Specialist is someone who has treated thousands of CML patients, and not somebody who just learned about CML.  I did experience that myself over a year ago.  My Oncologist retired, and the guy that took over for him was right out of medical school.  He was still learning, and he wanted to do an unnecessary BMB on me just to see what he could see. I left his office that day, and never went back.

Your doing good.  Just keep doing what your doing.

Susan

[Dina]

Hi Chris and Susan,

Yeah it's been only four months since I was diagnosed and I'm still struggling with it,

I think I'm just overwhelmed by the whole situation and want to know everything what to expect in the days ahead,

I will try to calm down a little and take it step by step, it sure is a long journey.

Thank You Everybody!