21 replies to this topic

[Tedsey]

So sad today.  I have been dx with CML for 2 years and and 9 nightmarish months (had some major issues with severely low counts along the way).  Not to say I have not had some wonderful times and some happiness during, but having a disease that I don't even feel right now, knowing all the time it can kill me, really sucks much of the enjoyment out of life.  Anyway, my PCR came back higher.  It is considered within range for stable, but it is so depressing.  Again, I was so hoping to be MMR.

Despite hearing that that CCR is still good, most every article I read mentions that reaching MMR or better yet, PCRU quickly, (or on time, and I have not according to Trey's calculations), have a very little chance of progressing.  I am on a full therapeutic dose of Sprycel (100mg) and have been for 2 years.  My blood counts are still very low (well, just on the border of needing shots for the red and white blood cells).  I can only think that since my blood quality has been so poor for so long, it is a bad sign.  Moreover, I usually come up with "toxic granulation" in my blood counts.  I have heard on this site, it could be trouble, but since it has been so common for me over the years, and I have yet to pop off from some infection, I am probably OK.  The only thing that I know is that it is common in people who suffer from leukemia.  So, it seems to be that leukemia is still very rampant in my body. 

I started taking curcumin for a year now (and Omega 3).  I upped my curcumin dose 3 months ago.  And I have not noticed any drop in any of my counts (PCR included--it actually has crept up).  Ironically, my PLT have increased to 70,000.  This is the highest they have ever been on a TKI.  So, it appears curcumin and Omega 3 are not making my counts lower.

Nevertheless, I have not really seen much change in my PCR taking Sprycel and curcumin (and Omega 3).  So, I will stop the curcumin and see how the next PCR in Oct. comes out.  If it stays the same, I could only guess the curcumin is not making the Sprycel work better for me.  However, I have this crazy idea in my head that the curcumin is helping to reduce inflammation, which cancer patients have a ton of.  I would hate to stop just for that reason alone.  But unless I do, I will have no idea if curcumin is helping to keep my PCR at my current level or not.

I have in mind that if I were MMR (or the heaven-sent PCRU), I could reduce my dose of Sprycel to get my counts up.  I cannot say that I notice anything different about my life with my current low counts, but I just would feel safer if they were normal.  So much for that. 

Just having a hard time with this.  I remember someone writing about a woman they know of who has been CCR for 14 years.  I guess that is fine if there is research to support that just being CCR forever = a very miniscule chance of progression---ever.  But that is not supported.  MMR and PCRU appears to be (or best liked).  Among other things (i.e. normal blood counts).  I feel like a failure and that this disease is silently and slowly beating me.

Anyway, seriously thinking about asking to see Dr. Tapez (he is closest).  After crying to my husband for half an hour on the phone, he suggested we take a long weekend to go see him, if only to make me feel better about my current CML status.  Perhaps when Ponatinib is finally approved, it will work better.  Hope my leukemic cells can be staved off that long.

I am so scared I will not survive a SCT.  And I don't want to continue life with any more misery that one would surely bring and with a small chance of living longer.  It would be a very difficult choice if the time comes.  Would I want to take a chance that it may extend my life?  Or would I have lived longer just letting the CML take its course with palliative care (it is considered a chronic cancer...).  It will be a tough decision.  But I hope it never comes to that for me or any of us.

To end, is it time to see a specialist?  I want to be proactive.  I think if my blood counts were more normal, I would not be as distressed.  My onc stays it is still because of the disease.  It has been almost 3 years.  And my PCR has been the same for the last 9 months.  I cannot say how disappointed I am.  It would have been great if Gleevec worked for me (cost-wise too since it will become generic first).  I cannot help but get so depressed that on 100mg of the strongest approved TKI on the market, and at 100mg, I am still only CCR after 2 years.  But yes, it could be worse.  My husband tells me, "Honey, no one lives forever."  I know he means well.  But you just don't say that to someone suffering with a deadly illness.  It is like a knife every time. (I think it makes him feel better and he is trying to be Zen about it.   but being Zen only really seems to work for those in good health and have had little personal tragedy in life (not to mention---have reached a considerable age--aren't most of the masters really old?).  I am not sure he really understands what it is to live a Zen lifestyle.  I think the biggest thing is compassion.  Well, anyway, I digress... At this point, I would like to make it to 50.  But I would be so incredibly grateful to die of old age.

Thanks everyone for giving me the opportunity to vent.

Tedsey

P.S.  My first onc said that I have no more good stem cells left (she had me on a SCT route until she contacted Dr Druker).  I was dx with 180,000 WBC 600,000 PLT and a very enlarged spleen (it swelled a week before dx).  She made her decision about the stem cells based on my spleen size and then on my blood counts that would not go back to normal.  Could what she said be true?  Even with the TKI keeping the CML in check for the last 2.9 years?  If I am CCR doesn't that mean there are some healthy stem cells reproducing?  Her gloom and doom way with me was so hard in the beginning.  I was already so terrorized by the dx I couldn't sleep for almost a year.  I was so afraid of the dark.  I still hear her prediction of doom for me despite my new onc who has just a "wait and see" attitude and seems OK with things as they are.  Wish I could let it go.  I guess if I were doing better, I could.

[Sneezy12]

I would absolutely see Dr. Talpaz as soon as possible, if for no other reason than your peace of mind. I'm sure that your husband would agree. Frank

[scuba]

Hi Tedsey,

I was sad to read your note. I had hoped you would be resolving by now. For what it's worth - my PCR a few months back came back double and I was told it was within the error range (i.e. one full log). The test was re-done to verify if the increase was real and it came back a full 1.5 logs lower than earlier. PCR tests can be highly variable. But I understand how you feel.

Dr. Cortes told me over and over that he does not use PCR as a prognosticator for success (i.e. you will live). He uses cytogenetics and how long it takes to get to CCyR. If your FISH counts are zero you are doing great. And you surely have good stem cells. Cortes would be concerned if PCR did start to climb 1-2- 3 logs and then he would want to go in and look at the cells again. So PCR is like the canary in the mine shaft for him. As long as PCR is stable and relatively low, he's not concerned. And if it changes within a log, he considers that noise.

I do wonder if you need the full 100mg. Sprycel? You may still be able to maintain your current PCR level with only 50mg. Sprycel and still stay CCyR.  In this way, Sprycel's myelosuppression effects might be lessened for you and your good counts would get better.

On Curcumin - when I received a PCR test result that showed double last test - I increased my dose of Curcumin. It is absolutely essential to take at least 8 grams of Curcumin per day or not enough Curcumin gets into the blood. How much Curcumin were you taking?

My next PCR test six weeks later showed my PCR had dropped significantly. I don't know if the Curcumin helped or not. It may just be absorption issues for you? What brand are you taking? How much were you taking? One could take a bunch of Curcumin, but if it is not getting into the blood - it doesn't matter. If you PM me, I'll tell you what brand I am taking and exactly how I take my Curcumin to maximize absorption.

Hang in there, Teds, - you'll get through this!

Michael

[rct]

I think about you all the time Ted.  It is worth wherever you have to go to get one of them guys to help.  We drove from NJ to Portland OR, about as far as you can drive in this country!  Yours is even more complex than ours, so I'm not sure what he'd tell you, but it's a beautiful country along the way and back too.

rct

[CallMeLucky]

I feel very badly when I hear about the way you feel.  I know it can be torturous and when I hear you speak, that is what I think of, someone who is tortured daily by these thoughts.  I don't have anything profound to say, while I know this can turn on me at any time, I know my response has been pretty good, so I won't take the position that I can tell you how you should feel or say things like "it will be alright".  I don't know if it will be alright, I think it will be, perhaps there is some optimistic hope in there, but I do believe from what I have read that if you can hold the CCyR you will likely be alright.

I think going to see Talpaz would be a very good idea, he is not that far from you and I think it would go along way towards helping you to be alright with where you are.  Your response is not ideal or excellent, but it is good.  For many cancers your results would be ideal, but we have more sensitive testing so we can look deeper under the covers.  I think right now you are questioning if things would be different if your saw a top specialist - do it and eliminate the doubt.  If he tells you your response is good enough, it likely won't make you feel a whole lot better, but it may help a bit.  More importantly it will rule out if there is something else you should be doing.  If Talpaz feels you could benefit from Ponatinib (and he just might) he can get it for you now, you wouldn't have to wait.  It is available for those who need it.  Ariad is also rushing to get it approved.

I don't know why you are not responding ideally and I hope at some point you do.  I won't offend you with cliche's about mortality, although I like to believe your husband is trying in some way to make you see some bigger picture that he thinks will make you feel better.  He doesn't have it, its hard for him to understand.  On the other hand he is probably scared and saying those things as a way to diffuse his own anxiety.  It would be easy to say that is selfish, but he probably doesn't even understand why he is doing it.  The only thing I will say is that you are here now.  You are alive now and you said physically you feel ok - now.  I am not trying to be Zen when I say we don't know what tomorrow will bring for any of us.  Your mortality is front and center in your head right now and rightfully so.  Your anxiety is exacerbated by the fact you have young children.  But here you are 2 years and 9 months later and still plugging along with no impending demise in your view.  We all have the ability in each and everyone of us to choose to be happy.  I'm not saying it is easy, I struggle with it, but I have learned or rather I have come to accept that I alone am the only one who can make me happy and my happiness is my choice.  In the face of the worst tragedies I can still choose to be happy (note I am not talking about walking around like a psychotic with a dumb smile on my face).  I am talking about my perception of my life state and how I choose to face this world.  I've been doing it for so long with a negative attitude that it was hard to even conceive of a different way.  But there is a different way. 

You have it tough no doubt about it, tougher than others but not as bad as still others.  Not that it matters, your path is different than mine and everyone else's, so comparing who has it worse isn't very helpful.  Your situation is unique to you and in that uniqueness also lies part of the solution to your dilemma.  You have constructed a path that leads to your premature death based on statistics, when in reality each person's cancer is unique.  How I respond does not impact your chances of survival.  There are always outliers and those outliers go both ways.  There are those like you who are not doing as well but continue to plug along and there are those who appear to be doing well who  have the rug pulled out from under them when they suddenly take a turn.  None of us know how this is going to play out.  We try to comfort ourselves with stats to make ourselves feel better and get back to that state of mind we had before diagnosis when we thought death was something way down the road and we didn't have to think about it.  I will tell you something you already know - it is just an illusion.  It's the mind's way of protecting itself from this curse we have as conscious beings.  We know we are going to die, it is kind of unnatural.  To cope, our minds pretend it isn't going to happen.  When we get sick it is hard to pretend.  We find facts that make us feel better as if they mean anything, but in reality nothing has changed all that much.

One thing you should note is that the survival rate for someone with CML who is CCyR is considerably higher than most other cancers.  Also note that the difference in Overall survival for people in CCyR vs. MMR is not that big, in many studies it is less than 10%.  Of those you have to factor in age and other health issues.  Again, I know that doesn't help much trying to see the sunny side of the road.  The only thing I will tell you is to try your hardest to enjoy life now - you are not a statistic.....

[LivingWellWithCML]

These guys are correct re: CCyR.  I see a recognized CML specialist and he has been very clear in that cytogenetic response is the best indicator for the long term, and he has patients who are CCyR but not MMR for years and they are doing fine.  I haven't fully accepted that either, but the data just isn't significant enough to say that MMR is that much better.  He also said that he has patients that have taken many years to achieve MMR as well.  There are many cases like that that we don't hear about on the board .... Since there are thousands of CML patients on TKIs.

Hope this helps at least a little bit ... Hang in there!

[Happycat]

Teds,

I'm sorry you had disappointing news. I think the best thing you can do for yourself is to see Dr. Talpaz. It will make you feel better knowing you are being proactive and who better to consult than an expert?. Ask your specific questions. Is CCyR good enough?  Can I be stable without MMR?  Is there anything else I should do to help me get to MMR?  Is there cause for concern with this recent increase in PCR?

From everything I've read, MMR is a nice to have, but CCyR is the best prognostic indicator for survival. Yes, there is a difference in survival between MMR and CCyR, but I don't believe it is that much. Still, those are questions for Dr. Talpaz.

Go see him, and let him know everything that you're thinking. Let him know how your first onc seemed convinced you needed a SCT, and how that continues to play on your mind.

As for your dh, I'm sure he must think he is helping you somehow. He just doesn't see how it might come off sounding to you. Have you told him that phrase just doesn't work for you?  I think we all feel like we should say something to make someone feel better, when in reality, just listening and being there may be enough.

Hope you feel better,

Traci

[pamsouth]

Tedsey.

I have been CCYR for 7 years now, on Gleevec.  On my CBC lab I have a few counts that may be border line low or just under normal.  But I am happy to stay at CCyR and live a relative normal life, with as few side effects as possible.  The only other med's I take is a blood pressure, a diuretic, and a low dose Lorazepam before I go to bed, to help me sleep.  I do have chronic bone pain, but that started long before I was diagnosed.  I sort of blame it on CML but then again it could just be my genetic make up.  I am thankful I haven't had to have any blood transfusion or infusions or PE.  I do have a slightly round face, and my eye lids are a bit droopy from the first couple of years on Gleevec and Hydrea.  But other then that I function pretty good on CCyR.  I have no desire to change med's and am not worried about being PCRU, but applaud those who make it.

Prayers and hugs xoxo

[Susan61]

Hi Tedsey:  I feel sad because your sad. I know you have been through a lot.  I also think you should go see Dr. Talpaz, and see what he says.  If you read one of my previous posts about a woman who has CML for 16 years, and has held her Ccyr all this time.  She is so determined to have something work for her after all these years, and she just wants to get to PCRU.  If you can stay stable with the Ccyr, then you can get the Ponatanib which could be the answer before you undergo a BMT.  I really do not know as much as others, but I do know that Faith Can Move Mountains.  Your in my prayers for your visit to Dr Talpaz that he has some positive things to tell you.

Susan

[Trey]

Tedsey,

You have good reason to be disappointed, but not to be concerned about your future.  You have made progress, and as with most progress, it is often not in a straight line.  Your recovery to having a stable blood cell making capability has been a  relief to those of us who have watched you struggle.  That has been good progress.  Although seeing Dr Talpaz might reinforce that you should stick with what you are doing, it would not provide any great revelations.  When Ponatinib is approved you could switch to it, but it would not be available to you now under any scenario since you have not failed Sprycel, and do not qualify for clinical trials.  You are doing well enough, and although not great, good enough is good enough.  Steady wins the race.

[Antilogical]

Tedsey -

Consider how wonderful it is that you are still winning the battle against CML.  Those of us who are just starting out in this journey are inspired by - and aspire to - your results.  Don't let up and don't get discouraged.  We're with you every step of the way!

[Pin]

Teds, I'm so disappointed that you did not get the news that you deserved.

I know this is not likely to help, but sometimes I think we all get a little caught up in the stats of it all -  we all want to be in the large percentage that the drugs work for, but even more than that, we all want to be in the really small percentage that they work really well for. Really, when it comes down to it, the stats are just stats - sometimes we use them to make ourselves feel better, and sometimes they make us feel worse - but the actual numbers never actually have any influence over what happens to us. When looking at the numbers, I get myself in a panic sometimes just thinking that at any moment, things could change (I could be any number in that statistical set). But what's also true, is that things are also likely not to change. Probably much more likely, especially when you have reached the CCyR milestone they think is the marker (I think that soon we will have further research about CCyR being a better predictor, especially given the margin for error in PCR scores, but turning research into papers can sometimes be slow - I am listening to the scientists at the forefront of this area, they make these judgements based on what they are seeing right now, they just haven't published it yet). Anyway, it might be of some help to think about it from that point of view.

It really, really stinks that you are not getting the peace of mind that you deserve, but I hope you can feel better about this soon. If seeing another doctor might help with that, then it would be worth it.

Pin xxx.

[janne]

Teds,

I just cannot even add to the heartfelt messages sent your way here....your friends on this board are beyond terrific in their support of you.   I would have to agree with you seeing Dr. Talpaz seeing that your husband is also on board with that. It is so hard for those who are by our sides and do not know exactly what to say as they are not living it, like Lucky says. Just know that we are cheering you on to find answers for your heart to be consoled, that you would continue to feel better than you have been, and you would not feel like you are alone in the dark. Susan is right, faith moves mountains. You are such a trooper ! Peace to your heart ...Janne

[pammartin]

Hi Tedsey,

I have been trying to consider comforting words, and either they fall short of the mark or I would be echoing other's posts, either way you are in my thoughts and prayers.  My situation is different, although my counts are still very low, but heading to Cleveland and seeing a person who sees CML patients every day and knows the treatments/options has finally given me comfort and peace.  I no longer second guess my treatment, labs, or worry about the time frame between them.  This cannot be all removed from your mind, but seeing a specialist and that person reviewing your records and talking to you while providing an expert opinion might be the best way for you to feel better about what is happening.  Had I not found peace at Cleveland, we already discussed the next step, I was headed to Michigan to see Dr. Talpez.  Positive thoughts to you and I hope you find some peace this weekend.

Pam

[Melanie]

Hello Tedsey

My heart goes out to you about your disappointments and frustrations. I pray that you find peace and the comfort that comes with it. I think a second opinion will help with that. Just someone else's qualified eyes looking at your situation and giving their opinion is pro-active and makes you feel in control a bit. All the waiting, worrying, and wondering zaps our positive outlook, so taking some type of action allows us to feel we're at least doing something to fight. 

I also struggle with the low blood counts and still get weekly labs. There's always anxiety waiting for the results...luckily, usually by the time I get home, the results are on my fax machine and a call from my Dr's office isn't far behind. Based on those results each week, we decide whether to stay, tweak, or keep the same treatment plan. I've been doing this for 15 months and Monday I go in for my 2nd fish and pcr test. I have a partial cyr and a 2.8 log reduction at last test. I don't expect these new test results to be better due to lower TKI dosage and I've stopped taking Curcumin on Dr orders, in an attempt to manage my low counts. I'm content, at the moment, to do baby steps. I've gave up a long time ago on reaching the "recognized response milestones". Each of us are different and I realize that those averages don't apply to me...they're just a measurement of progress and my progress measurements will be different...but "progress" all the same. 7 months ago, on my Dr's recommendation, I was being typed for a SCT and found a good donor...but based on that second opinion I received at the Mayo clinic, I'm still here fighting this diease with drug therapy and will continue to do so until there's absolutely no other options left, no matter how long it takes. It's been a new experience for my Dr too, but he's willing to try, go against the "normal guidelines", all based on that 2nd opinion, so here we are. My warning signal is blast cells...no blast cells, then I'm good.

I say all this to hopefully let you know that you're not alone in this fight and to give you encouragement, just like your's and everyone else's previous postings of wisdom and experiences have given me. You've given me much hope and inspiration in the past, as all the others...thank you. This board has been wonderful in so many ways...but most of all it's the feeling of not being alone in this and knowing that all you have to do is come here and there's help, laughter, and hope. My prayers are with you and all...Melanie

[TeddyB]

Tedsey:

So sorry you are feeling so bad. I hope things turn around for you soon.

You mention Ponatinib could work better for you, well, if we are lucky, Ponatinib will be approved in first quarter of 2013, so the wait will hopefully not be to long.

http://www.boston.co...RMeK/story.html

Hope your feeling better.

Teddy

[Tedsey]

Thanks so much everyone.  I could have spent the whole weekend in a depression.  The day I read my PCR number, I didn't even brush my toddler's teeth.  I let them get into and eat junk, didn't dress them and spent the day in my pj's.  I just couldn't do anything.  Your posts really helped.  I got my act together and took care of my kids.  I fed them a good dinner and brushed their teeth in the afternoon.  I felt really mad at myself for doing this to them.  My husband was away for 2 days and nights and it was really hard to deal this time.

Well, if I can hold CCyR until I am good and old and see my kids grow up, I will have had all my dreams come true in this life.  That's all I really want, and peace on Earth, but it appears CCyR is more available.

I feel so much better.  I cannot thank you all enough.  What can I do but keep on plugging through?  I have always had an unusual physiology and have responded differently to all medical interventions, medicines, etc. my whole life (the large nerve in my face is also in an unusual location, so when I got my first filling, it was quite a sticking fest--if that doesn't continue my fanaticism with oral hygiene, I don't know what else...).  Why would things change with CML?

Take care.  I am so glad you all are here.  Thank you so much for being there when I most needed you.

Hugs to all,

Tedsey

[GerryL]

Hi Tedsey,

I'm glad you're feeling a bit better.   I think I've mentioned to you before about the lady on Jerry's board who wrote that she was CCyR for around 21 years and has only now achieved MMR on Ponatinib. Perhaps that will be the drug for you which will get you to MMR and allow you to feel safer.

My wish for you, is that not only do you see your children grow up, but also your grandchildren as well.

Sending good vibes your way.

Hugs

Gerry

[pamsouth]

Wow,

CCyR for 21 years.  That mean she was Diagnosed before Gleevec.

Good news to hear!!

PamSouth

[pammartin]

Hi,

Your comments about the dentist almost put me into fits of fright.  Of all the things I am still fearful of......the dentist chair is a biggie. 

I am glad you are feeling better, and don't beat yourself up.  The kids were fine, the junk food didn't hurt them for a day and you have to give yourself leeway because you are human.  That reminds me of a similar story, when my son's father and I divorced I let him eat cookies for breakfast.  To this day he still remembers that and he reminds me of it occasionally.  To him it was a big deal, I laugh but feel guilty that is one of his strong memories, go figure. 

I hope you had a peaceful Sunday and I will place money I don't have on the fact your children's teeth are cleaned and sparkling before they touch the sheets this evening. 

Take care, positive thoughts to you and yours.

Pam