62 replies to this topic

[CallMeLucky]

Thank you, I don't think I am going to have much of a choice when it comes to switching.  I just went up to 70mg two days ago.  I have a painful swollen lymph node in my neck, I have a rash and hives all over my body and I am running a low grade temp about 100.    The bottom of my feet itch I want to smash something!  Just took one Benadryl, one Advil and put on some topical caladryl lotion.  I'll get my BMB and then move on to something else.  I just have to find the set of side effects I can live with.  The reality is if Sprycel just gave me this rash I could tolerate that.  Ok, done complaining.....

[ChrisC]

Hey Gary,

Wishing you well throughout this transition time, then on to better QOL and perfect health

One little thing to suggest: choose to have your attention on what you want, then let it go. When we focus on what we fear, or what we don't want, then that grows stronger in our life (unending worries, fulfillment of our fears, etc.). In the same way, when we turn it around and acknowledge what we want ("complete comfort and perfect PCR tests of 0.000 ever-after") then that grows stronger in our life. Same amount of energy, used with practice in a new, life-supporting habit.

Good luck!

ChrisC

P.S. You can always let us all know what you want us to put our attention on for you, to boost the blessings!

[CallMeLucky]

Thank you Chris, I really appreciate it.  This transition time has been quite the challenge, as they say when it rain it pores.  I spent last night in the emergency room.  I woke up around 1:30 AM to use the bathroom, I was having trouble opening my eyes so I looked in the mirror and my eyes were swollen almost shut.  I looked like Rocky Balboa in round 15.  This is added to the low grade free I have been running past few days with swollen lymph nodes in neck and hives. 

I kept pretty calm about it, while I worried about CML, this had allergy written all over it.  I thought it may be result of bumping up Sprycel to higher dose, but I have also been on an antibiotic for 12 days.  ER gave me anti-histamine and steroids and ran a CBC to be prudent, blood counts were normal and they sent me home after about 4 hours.  I called Onc this morning and he said he didn't think it was Sprycel because I have been on Sprycel for a while and never had this and even though I increased to 70 I had been on 70 a few months ago and even 100 for a while so it didn't make sense it was Sprycel.  I called the Urologist that prescribed the antibiotic and he said he felt it was 100% the antibiotic and to stop it immediately.

So home today resting, swelling has gone down a bit.  The lymph nodes also seem less irritated.  Will be interesting to see if the intermittent low grade fever stops.

BMB first thing tomorrow morning, hoping to put this behind me and get back to a place where things are a bit calmer.  I try not to worry so much, I really wish I didn't but it is the way I am.  I have been reading some literature on it and there are theories that say there is some amount of natural influence and that it is not all learned behavior.  This type of obsessive worrying runs in my family.  Not everyone does it, but there are some of us who seem to be cursed with it.  It sucks to be that way to begin with and then add a serious chronic illness to the mix.  I say all the time I know way too much about my illness.  But I am learning to live with it.  For instance I'm trying to be a little less involved in my care, I know that sounds opposite of what we are told as cancer patients, but the reality is I am always going to be over thinking things anyway so if I can pull back a little I can try to give myself less to worry about. 

For instance last night in the ER the Dr told me my blood counts were normal.  Typically I would ask for a copy and inevitably there would be something in the counts that catches my eye because it just doesn't look right.  Everything could be perfect but one count ever so slightly off and my mind will start racing on what that means and the doctors always look at me like I am nuts (because I am).  I have found after 3 years of doing this that there are going to be little weird things along the way and they never turn into anything.  I know I am seeing onc tomorrow and he will do another CBC, I just had one two weeks ago, so if there was something there that was going to be a problem it would show itself and me analyzing it and worrying about it isn't going to change a thing.  So I am trying to let go a bit and let things come as they may.  Not easy but I am trying.

I appreciate the kind words and the positive thoughts, I am trying to work on meditating as a way to get some control over my mind, it is not easy for me at all, very difficult, but I will keep trying because the other way isn't working.

Thanks again and let's go with the "complete comfort and perfect PCR tests of 0.000 ever-after"

Gary

[Marnie]

Geez, Gary. . .you have been through the wringer!!  Hang in there!  Hope all will go well with your BMB (I'm sure that it will). 

Marnie

[Susan61]

Hi Lucky:  I like your attitude, as far as you not wanting to know everything.  I am starting to feel like that myself, because I dwell on things like you do.  I get my blood work results, and I am told all is fine.  Then I have to fine tune everything to see why each number is what it is.  Then I get myself all worked up.

It does sound like you had a bad allergic reaction.  One time at work many years ago I was having bad Arthritis pain.  The nurse gave me a Naprosyn, and then I went to the lunch room.  I was only there about 15 minutes, and my whole face blew up.  I got shortness of breath and chest pain.  Luckily I worked in a medical office.  They said I had a  Anaphylactic Reaction.  They had to give me a shot, and lay me down in one of the examining rooms.  To this day, we are not sure if it was the Naprosyn, but I always list it as allergic to this drug.  Thank God I was with doctors and nurses.

    Enjoy your summer, and find some things to do to get your mind off of all this.  I know its hard.  Right now I am so busy taking care of Gary's issues, and my 88 year old mothers issues that I have had to leave my problems alone this week.

   Meditation sounds good to relax you.  I start my day everyday and end my day in prayer, and I know thats what is getting me through all this.

   So glad we are all here for each other at all times.

Susan

[CallMeLucky]

Well the BMA is done, now comes the waiting.  Should have results of karotyping and FISH in a week.  The expectation is that they won't find an PH+ cells given my MMR status, so that would be a surprise if they did, hopefully no blasts or other genetic abnormalities.  Assuming that is clean then we wait for the mutation analysis, which could take up to 2 weeks.  Once we have that we'll see where we go.  Currently at 70mg of Sprycel and doing ok, Dr says he doesn't want to rush back up to 100, wants to wait for results and see what next PCR looks like at 70mg.  My White Count was high today, 10.9, but he said he was not surprised based on the allergic reaction and the prednisone, he said he would expect them to be higher.  All other counts were normal.

So hopefully everything comes back clean and it comes down to just needing more drug.  Trying not to go to the dark place in my mind with the what ifs.

[alexamay09]

Hey Lucky.  Thinking about you. It's hard not to become anxious. I'd an agonising week after a recall for mammograms, scans and a biopsy related to my previous cancer.  Got the ok yesterday but in some way s the fear never really goes. I will be getting bloods done on Friday for cyto genetic testing then the 3 week wait for results.  This stuff changes life so much.  I will be looking point for your results.  Xx

[CallMeLucky]

Thanks, glad you got some good news on your tests.  It does change you and the fear does not go away, but we try to push forward and focus on the good days as much as we can.  I'm trying to scale back the time I spend worrying since it is mostly wasted time.  I keep asking myself "is worrying about this going to change the outcome".  The answer is always no, so I try to stop thinking about it.  I'm not great at it, but I am trying....

[Pin]

Geez Lucky, you have had a rough week! I too am working on the whole not worrying thing - boy it is difficult. I am really struggling this week -  I think in anticipation of my next PCR next week. Before the last one I was absolutely convinced it was going to go down again, and when it didn't, I felt really unsure of what to expect next. This time, I am hesitant to expect anything in case I get burned again - but I think under all that, I am starting to expect the worst. I can't work out though if my pessimism is based on facts, or just 'feelings', which we know are unreliable - it's hard though when you feel like all you are getting is confirmatory evidence...

Anyway, I really do hope you are feeling ok after all of your tests - you have had a rough time of it lately, and I really am wishing you some good thoughts this week.

[TeddyB]

CallMeLucky: I dont think a few % blasts in the marrow necessarily is bad (I found this on a site, and ive read it a few other places as well: "In normal humans, up to five percent of the cells found in bone marrow are blast cells"), if its in peripheral blood on the other hand its probaby not a good thing.

My last PCR was 0,01% and 0,02% IS, and my BMA came back fine, but i had 2% blasts in marrow on which my onc wrote "Normal findings", i also asked my gp about this and she said it was not anything to worry about.

I dont think you will find any mutations since your PCR is so low, i am hopefull that you will put your mind to ease a bit after these tests, and i wish you the best of luck!!!!

I have my 15 month pcr draw coming up on monday, after the small uptick on the last test i am somewhat nervous, but it was well withink the margin of error so i am still trying to stay positive

Also i have never been as stressed as when i draw my last PCR, i was having both pcr and bma, and there had been a big car accident on the main road to Oslo, so we had to take a side road, and arrived 1 hour late to the blood test, and 5 minutes late to the bma, im hoping my stress could have had something to do with the small uptick.

Teddy

[CallMeLucky]

Agreed, a low percentage of blasts would be expected in bone marrow.  The key is for it to be a low amount and for there to not be any other genetic abnormalities.

Right now I just want to get through the next two weeks, hope the results come back clean, I get on a drug I can tolerate at the proper dosage.

That and I need to figure out what is going on with this allergy.  After being fine all day yesterday, I woke up with my eyes and face completely swollen.  Back on more prednisone.

I think my last three PCRs all done within weeks of each other show that there can be some fluctuations in PCR numbers.  I wouldn't expect stress to cause your PCR to go up, but if it did, that would perhaps explain mine.

Good luck with your next draw.....

[TeddyB]

Thanks Lucky, having a glass of wine trying not to think to much about it

Yeah, ive read some people think stress can cause the pcr to pop up abit, but i think thats more of a feeling than exact science, but who knows. If exercise can cause pcr to increase right after exercise, who knows what a few hours of "mega-stress" might do......

[CallMeLucky]

I think if there is any validity to the theory it would be based on the fact that stress and exercise can increase WBC production.  So I guess you could say if the WBC count is elevated then there could potentially be more BCR-ABL floating around.  I don't know how sound that theory would be though because the assumption there would be people with low counts would have low PCR and high counts would have higher PCR, since it is not based on absolute count, but rather ratio, it would seem that the increase in WBC would be irrelevant.  Now if stress itself could cause Leukemia gene to be more active, well then I am screwed and better get myself on a thorasine drip immediately.

[TeddyB]

Lets hope stress doesnt interfere with pcr, cause i am more stressed than i like to admit myself sometimes, at least around PCR time.

They give me Diazepam before my bma`s, never heard of thorasine, but it sounds "nice"

[CallMeLucky]

Frustrated and having irrational thoughts.  Still no results on my BMB or mutation analysis, which is slowly driving me nuts.  A couple of nights ago I started having some pain in my mid left side abdomen.  I noticed it while sleeping right behind my rib.  Now it is more persistent througout the day.  I'm trying to be reasonable, I keep telling myself my PCR from 3 weeks ago was still MMR and my CBC had no blasts, although WBC was 10K+, but Dr said that was because of predisone.  I can't tell if this pain in my belly is muscular or my spleen.  I think it would be so unlikely that things went haywire so quick and now my Spleen is bothering me, but the waiting on the test results just makes my mind wander and even the most unlikely scenario starts to not sound so unreasonable each day that passes.

I hadn't had this problem with Sprycel early on, although I do have muscle pain around the sternum, left pectoral, and left armpit and the bump up to 70mg has aggrevated that more.

I am also taking the Levaquin for 21 days and I read on the side effect profile it can cause "upper abdominal pain".  So again I am trying to be reasonable.  I just get these bad feelings and can't shake them, so frustrating.  Hopefully this pain will settle down and I will get results soon and they will be alright, I need to get passed this bump and get back to place where I can feel somewhat at ease.

I hate this so much........

[scuba]

Gary - Levaquin is dangerous. I was prescribed Levaquin several years ago just before I was diagnosed with CML for 'bacterial' Pneumonia. I had the same reaction and had to stop after 3 days of the drug. It can cause heart damage, tendon damage and all kinds of other problems:

http://www.levaquina...vaquin-dangers/

Levaquin should never be prescribed - unless dying with no alternatives.

Prednisone is also another nasty drug: http://ghthomas.blog...isone-anti.html

Until you can get off the other drugs, it's hard to know if sprycel alone is an issue. I suspect it is not. I also suspect you had a good response on 50mg and that if you could have stayed there, that your PCR would most likely drop back down again to "undetected". Sometimes you have to stay the course for awhile and let these things work out. CML is not an "unknown" disease. It's slow, it's predictable (for the most part) and they have many treatments. Most anything you do with CML takes months before they can see the result.

Get rid of those other drugs one way or another.

[LivingWellWithCML]

I agree with @Scuba!

When I had 'supposed' prostatitis (which started about 6 weeks after I started on Gleevec), my PCP put me on ciprofloxacin.  Within 7 days, I had all kinds of terrible side effects, pain, and unusually high levels of anxiety/worry - all of which I believe were induced side effects (including the anxiety, BTW), so I stopped it immediately and things subsided.  In my uneducated opinion, the fluoroquinolone class of antibiotics is nasty stuff, and I will never ever take it again.  For what it's worth, I was moved to doxycycline + bactrim DS and I handled a 21-day course with no apparent side effects.  If you **need** a course for something bacterial, then it might be worth a change.  But -- I never had a confirmed bacterial infection, so the urologist was just guessing.  I found that my prostatitis-like symptoms subsided when I treated the resultant anxiety to a manageable level (which I still believe was induced from cipro in the first place).  Also note that the high levels of anxiety caused me unexplainable abdominal pains, swelling/pain in places around my body, etc.  You're waiting on some important test results, so it's entirely possible that the mind/body connection is acting up a bit ... I know it has with me.

I don't have any direct experience with Prednisone, but anti-inflammatory steroids is another class of medication that I completely avoid.  With this whole 'ringing in the ears' that I now get, the ENT prescribed a 10 day course of one of those steroid medications to see if it might knock it out.  Despite his reassurance that it wasn't dangerous for me to take it for 7 - 10 days, I shredded the prescription.

You are super knowledgeable about CML, so you already know that the scenarios your mind's playing out are --extremely-- unlikely.  If I posted a similar challenge in my journey (which I very well might at some point), I know it's what you'd be telling me right now.

I will be thinking of you Lucky and am confident that this will settle down for you very soon -

[CallMeLucky]

Mike and Dan

Thank you I appreciate all the sound rational advice.  I know the antibiotics are a variable I certainly don't need right now but I am quite tossed on that one.  While they have not been able to find an infection in my urine samples there is a belief that I could have an infection in the prostate and when you have a chronic infection you need an extra long course of antibiotics.  A lot of times it doesn't work but you have to rule it out.  Since I have been on antibiotics my prostatitis has been considerably better.  That is not unheard of many prostatitis sufferers claim that antibiotics help but then often it comes back.  But sometimes it doesn't so I am trying to stick it out and see if I can knock out the prostatitis.  If I didn't have the BMT results hanging over my head I would just chalk it up to side effect and stick it out.  It's not the pain it is worrying what the underlying cause of the pain is.  I was on Bactrim and it worked great until 12 days it I wound up in hospital with allergic reaction.

My abdomen pan is probably the antibiotic (maybe stress).  I just want to get the all clear on the BMT so I can stop with the irrational 1 in a million thoughts and just push through all of this.

I'm reading Philadelphia chromosome and about the early cml people in the phase 1 trials and I'm thinking to myself they gave these people low doses for a while starts and stopped them and most of them did well once they got to therapeutic dose.

Hopefully this will resolve in a few days for the best and I can get back to a normal level of worry:)

Thanks again, even if I already know something it really helps to hear someone else say it.

[Tedsey]

Sorry to hear you are having a tough time with this and had to go through a BMB.  I had a short course of Levaquin for pneumonia right after dx.  I developed terrible pain in my Achilles tendon during the course, but finished it.  I am not an advocate of taking antibiotics without labs to back up a real issue.  I always ask the doctor if I could go without.  I have never met resistance to this question, and keep an open mind that if things don't get better, I should probably try the antibiotic.  Sadly, we cannot use the common antibiotics prescribed because of interactions with TKIs.  Cipro and Levaquin, both very strong, "when all else fails" drugs, are used first with us. 

I think this article (non scholarly) about antibiotic use in meat relates and of course I could send you some on "over testing" and that many common tests used have no support in prolonging life if cancer is found.  Lately, I have seen and heard about a lot more of these articles popping up.  Here is the link:  http://www.pbs.org/w...e/overview.html  It's good food for thought anyway.

It is also my belief that anti-inflammatory drugs are overused without due cause.  When I was younger, I had a ton thrown at me for aches and pains.  I also had a childhood filled with steroids for my terrible eczema (and nothing cured or relieved it).  It turns out physical therapy and not drugs cured my physical pains, but it took a long time to find that out.  Drugs were used first.  I am not anti-drug, but I will never forget the devastating news about the CML I never felt until it could be detected.  Truth is, medical science is not so advanced that it can be determined with flawless accuracy what will develop into cancer or another devastating and/or "life limiting" illness, or what is the exact cause of inflammation.  I am not sure how much control we or our doctors really have heading things off at the pass.  Some things, sadly, just come into being.  And we all hope they don't.  It seems most people don't think about it, but I think once you have been dx with a deadly disease, it is more front and center.

I wish you the best, good health, and peace with these issues.  It is hard not to fear the worst when we have already had one of the worst kinds of news possible.  Where cancer was the absolute worst thing we could get, now we are free to imagine other horrible things with no abandon (since it "happened to us").  But because we got CML, it doesn't mean it is fodder for the rest.  Keep us posted on your results.  Keeping fingers crossed.

Teds

[Tedsey]

I just wanted to add, my spleen was very big.  I didn't feel it until it started to stick out.  Then, it was only sore when my kids crawled on it.  Otherwise it was not that painful.  But that was my experience.  I have a poor memory, but I think you were not dx with splenomegaly.  So if you have pain there, it may not be your spleen.  Hope my previous post didn't make you feel worse.  If you feel best on the antibiotic, by all means I support you taking it.  I was just sayin'. 

Take care,

Teds