7 replies to this topic

[LLawrence]

I found the following National Cancer Institute grading scale of adverse events from chemo.  I thought this might be helpful to other folks who are either newly diagnosed or changing meds.http://ctep.cancer.g...ocs/ctcaev3.pdf.  Good luck to all.  I naively thought that the side effects were graded on a 10 point scale (wrong, 5= death), so grade 4 side effects didn't sound so bad. Hope this helps.  LL

[Tedsey]

I guess I really do have one foot in the grave (and holding for the last 3 years).  In the blood department, I am and have been steadily 3s & 4s.  Uggggh!  Not sure if this totally relates to our TKIs though.

[LLawrence]

Am changing from Gleevec to Tasigna, so I may experience some of those higher grade effects on my counts.  No life threatening side effects with Gleevec, but ALL of the non-lethal ones (and worsening over time).  That's what lead me to read up on the definitions of the side effect profiles.  Does this get less scary with time?  I'm 8 mos into treatment.

[Tedsey]

Uh oh!  I didn't realize with whom I was talking.  When I was 8 months in, I was still terrified.  I apologize.  Although low counts can be serious business, it is not totally uncommon with people on TKIs.  For most people, it takes some time to get back to "normal" levels.  Most of us continue to run a little low (blood counts) years into treatment.  I cannot speak for others, but I have had serious low counts, and with some, I still do.  I had seriously low hemoglobin, white blood count, including my absolute neutrophil count (medical professionals look at neutrophils to the body's potential in fighting bacteria), and very low platelets (below 30K).  With some shots, blood transfusions and a change in TKI, I slowly crept back up out of the "danger" zone.  However, I still sit in the 3 and 4 range according to your article.  FYI, TKIs are not chemotherapy.  So, the side effects that we experience may or may not be related to the article you posted.  However, I have seen oncologists grade side effects using what I think is the same scale.  Please don't freak yourself out reading these kinds of articles.  But we all do that in the beginning.  You will read and even hear all kinds of things.  Not everything published is the "word of God".  Some things reported are wrong.  The best thing you can do is post here and ask.  There are many smart people on this board that can help you sift through what should be considered and what should be disregarded.  Oncologists don't live with our cancer.  They read books and treat people and most doctors don't spend the time we do obsessing about our life with CML.  The worst of having this disease is emotional/mental.  None of us want to be considered a person with a "shortened" life span.  Ironically, many of us will not fulfill that label.  I hope you are one.  Remember, things may head south before the start to return to the north (no offense to my Southern friends).  I have been diagnosed for 3 years (end of May 3.5).  Maybe I have been lucky, but the low counts have not changed my life.  Just knowing I have CML has.  Otherwise, I live a pretty normal life.  It does get better, but from time to time I find myself feeling blue about getting this disease.  I hate it.  I wish for a cure in my lifetime.  It is not silly to hope for that.  The disease is one of the best understood of the leukemias.  Treatment has been very successful in prolonging life.  And for many of us, maybe indefinitely (until something else knocks us off--like old age or a speeding bus).

Wishing you peace and all the best,

Tedsey 

[LLawrence]

Thanks, Tedsey.

[Susan61]

Hi Tedsey:  I wish you the best, and I think you have been holding your own pretty good.  My WBC is always in the 3's, as well as my RBC.  My Platelets have dropped to 119.  I am due within the next few weeks for my regular blood work, but no PCR test till July.  The Gleevec has had a lot of side effects, but nothing that I have not been able to live with.

I would hate the thought of switching after 12 years of taking Gleevec to something else that might not work for me.

So I just keep doing what I am doing.  Praying we all get to see that cure in our lifetime.

Take Care

Susan

[CallMeLucky]

It gets less scary with time.  Humans are resilient and we adjust, somewhat.  Some of us will be more stressed based on our nature and some of us will respond better to treatment than others.  Overall the outlook for CML patients is pretty good considering it is a malignancy after all.

Tasigna should typically result in fewer side effects than Gleevec, the tradeoff being the side effects from Tasigna are rarer but potentially a little more serious.  They are not typically considered serious in the sense that they would kill you instantly, more along the lines of show stoppers that would require you to take a break from the drug or potentially stop the drug permanently, for instance with pancreatitis.  With Gleevec a lot of the side effects are not very dangerous so we are encouraged to stick with it and ride them out.  Everyone responds differently to each drug so you will know soon enough what it does for you.  Try not to let it worry you too much.

[LivingWellWithCML]

Lawrence,

I've been on Gleeevec 400mg for two years and according to this doc, sometimes my CBC comes back with Grade 2 neutropenia - the lowest I've recorded is an ANC of 1.45 which is right on the upper edge of Grade 2, but I had bloodwork two weeks after that and recorded an ANC in the normal range ... and my WBC since starting TKI treatment has come back between 3.2 - 4.6, but I've never been able to get back consistently into the normal range, and I imagine I never will as long as I remain on 400mg.  Meanwhile, per Tedsey's post, my biggest challenge to-date is more emotional and anxiety - despite my initial panic over the first 12 months, I've remained healthy over the past 2 years and still get sick less often than the rest of my family!

I think many/most of us live in a "new normal" in the Grade 1 and 2 neutropenia range, right?  The onc I've been seeing shows zero concern as long as my ANC > 1.0, so I think as long as you can maintain Grade 2 or better on Tasigna, then you'll probably be fine.  I do wonder if the onc's decision to put me on Hydroxurea for the first couple of weeks (while we waited on my Gleevec prescription) damaged my bone marrow further and has not allowed me to return to a normal range.  What's done is done, but I wish I had known more at diagnosis -- I was 155,000 WBC and ran a 5K road race a few hours before I got "the call" to report to the ER, so I imagine I could've survived for another 2 - 3 weeks and let Gleevec beat down the WBC instead.

Although I was already a thin guy at diagnosis (and a runner), I lost an alarming amount of weight over the first 6 months because I was so worked up - I was already a pretty high strung guy, so that didn't help.  But I've managed to gain weight over the last 5 months or so, and my wife believes it's because I've finally calmed down and learned to live well with CML.  So yes, it does get better.  My advice is to continue interacting with all of the great folks on here who have been on treatment for a while and are doing great (see Susan above - she's the ray of hope for so many of us), and note that many of them have gone through TKI changes successfully as well (see CallMeLucky above).  My 2-year is coming up, and I don't know what will happen or if my course will need to change, but if it does, I feel like I am in a good place knowing that others have successfully transitioned across TKIs, and the fact that we have several approved options in the arsenal in case one transition doesn't work as well.