28 replies to this topic

[jrsboo]

Hi everyone,

I haven't been here in a while, but things are going well. 

Short review: DX 9/2010 but with only about 32K WBC (I was diagnose very very early), started on Sprycel 100 mg.  I had an immediate and deep response, and had normal WBC in about a week.  Undetectable/Indeterminate PCR in a couple of months. 

After two years on Sprycel 100, the side effects were getting to me, so we switched me to Ponotinib 15mg, to see if it was the class of drugs (tki's) or the specific drug that was causing the side effects.  That did not help.  Still had the leg pain, fatigue and confusion, but now had a ton of new side effects that made daily life difficult.  So after 6 months we moved to 50 mg Sprycel.  Side effects much improved but still the pain cycles in and out, as does the fatigue with constant memory problems. 

So depending on latest PCR results, which I will get on Tuesday, we are going to move forward and drop it to 20 mg.

Interesting discussing with my Onc.  It is so odd to be here on the cutting edge of medicine.  Two years ago there was only some vague discussion of reduction or stopping, if we could find a trial to get into.  Now there has been enough information circulated, that it is becoming more apparent that if you have a strong and deep reduction quickly in your PCR, it is more likely that you will be a candidate for reducing or stopping. 

What an interesting ride this is! 

I hope everyone is doing well.

Warm thoughts,

Caroline

[mdszj]

hi Carolyn

Please post any updates, this is an important subject that I also started to think about recently.  I also take 100 mg Sprycel, and things are going pretty well for me at this time.  Luckily my side effects are currently not too bad.  I was officially DX on 7/11/12 (WBC = 53K), reached MMR with PCR = 0.044% IS on 6/24/13 and reached undetectable (PCR 0.000 % IS) on 10/4/13.  I figured that I would stay with the 100 mg Sprycel dosage for at least 2-3 years to try to beat down any remaining Ph+ cells, then talk to my hemo about starting to slowly reduce dosage.

Good luck I hope things work out well for you.

thx Mike

[jrsboo]

Dear Mike,

That course sounds about right, from what I have been reading (and I read a LOT on this subject).  I am glad your side effects are not so bad.  Unfortunately, mine have been enough to actually qualify for disability.  I know there is another discussion on the board about how to apply and get it, so won't go into it here.

Warm thoughts,

Caroline

[acb]

Caroline,

This is great news! Please keep us posted. I would love to lower to 20 mg - heck, I would take 50 mg at this point. I have followed a similar path to you, but I haven't been able to convince my onc. to lower my dose below 70 mg. Dx July 2010 with higher wbc (I think it was 147k or thereabouts -- they took it 3 times in less than 24 hrs and ranged from 129k to 147k). I was put on 100 mg. of Sprycel and had a quick response as well. I was PCRU by October 2010 and have been PCRU since then. I talked my doc into lowering my dose to 70 mg (was trying for 50 mg) in July 2012 due to side effects. They weren't horrible but I was worried about heart issues especially. I have been asking her to lower again but she won't. I tend to just put up with the side effects but they are really starting to wear me down.

I'm curious about disability. I will have to read up on that. Thanks!

[jrsboo]

Dear ACB,

Well, all of this is so darn new.  I am actually surprised that your onc allowed anything lower than 100.  Still waiting for my PCR results.  I just this instant opened an email and sent it to her pinging her as she asked me to, to find the results.

As for disability, it was harder than I thought, but I was granted it AFTER proving medical records, having oncologist sign paperwork stating I was unable to work at any job (Not just the one I was trained for), and then Social Security had me examined by one of their own psychologists (despite me having a 14 page report from the head of the department at UW Medical on how my memory was compromised).  Luckily I "failed" the memory tests, just like the time before.  So many holes, my brain does not "write" new memories to short term memory, so there is nothing to go into long term memory, thus holes in my recall.

Will try and keep everyone posted.

Hugs,

Caroline

[jrsboo]

Ok, the onc called.  The PCR was low low positive (indeterminate), so she recommended going forward with the reduction to 20 mg.  The first couple of days were odd, still had fatigue and the confusion that has dogged me, although my brain seemed to be more active.  The third day was taken up by a massive headache. During this time, I am starting to wake up in the middle of the night two and three times, with brain dancing away, working on stuff (like it used to before all this CML stuff). And then...........for the next couple of days I have felt........human.  I am thinking quickly and accurately, and I have not been falling over with fatigue and in bed by 7 or 8 every night.  In fact, yesterday after cleaning the house in anticipation of a friend over in the afternoon, walking the dog, making a hot cooked breakfast, stripping a left over chicken for chicken salad, having lunch, visiting with friend, having dinner and knitting most of the day, I LEFT THE HOUSE at 6 pm to go OUT.  I went to a movie.  Thoroughly enjoyed it, had tons of energy to drive home and then read half a book, I didn't want to go to sleep ever!  I felt great!

THIS I can live with. 

I really really hope this lasts.  And that my numbers stay low. 

Hugs and Hope to all,

Caroline

[hannibellemo]

OMG, Caroline, that's fantastic news. I hope you can retain your PCRU at 20, would you be satisfied with MMR? This whole thing about feeling normal when I've had to take a break for one reason or another and then go back on the TKI and I return to "normal". It's all reminiscent of Flowers for Algernon, did you ever read it?

Pat

[Marnie]

Congrats, Caroline,  that sounds great!  I'll get my PCR results next week, after being off Sprycel twice.  I was surprised that starting up again at only 50 mg still gave me the Sprycel headache.  Maybe at 50 mg I'll have as much energy as you do??  Actually I can already answer that question.  This job is killing me, and the TKIs don't make it any easier. 

Flowers for Algernon was a wonderful book (the movie was good, also, though it may have had a different title), but the ending was not so good. . .

[hannibellemo]

Charlie was the movie, and it was very good. I just remember thinking the first time I was off G for the extended period, that I didn't realize how bad I felt on G, until I wasn't taking it and felt so good. Like Charlie, I knew I was returning to the way I felt before the break, just like he was aware he was losing his super intelligence and returning to the low IQ he had before the experiment.

Maybe a little too dramatic?   

Pat

[Marnie]

I hadn't made the connection to the book/movie. . .but now that's what I'll always think of.  It was SOOOOO nice to get rid of the Sprycel rash for a couple of weeks.  But now I'm back to the old, tired, rashy Sprycel-me.  Darn.

This is also weird (I assume that everything a little weird is due to Sprycel). . .lately, when I'm talking, odd words will drop into my sentence, instead of the word that would make sense.  I'm starting to sound like an idiot when I speak.  Maybe it's stress. . .the job is pretty darned awful.. .but it's the weirdest thing.  I've always been fairly well-spoken, and I typically sound at least somewhat intelligent when I talk.  Not so much anymore. 

Marnie

[Marnie]

Billie. . got your e-mail.  Will reply sometime.  Right now I'm in the middle of report cards.  Electronic grading system is not working.  Today, while having to deal with the full-time job of teaching, I also had to spend the day e-mailing a number of administrators to try to trouble shoot why the damned report card was printing grades in second semester instead of first semester, and why the p.e. teacher's grades were only partially printing.  IS THIS MY JOB??!!  Shouldn't be.  Seems like someone else (administration perhaps??) should be dealing with the technical issues. 

Things will calm down once we get into second semester. . .maybe.  Then I'll type up a nice, calm, interesting e-mail with no ranting and raving. 

Now I'm dealing with a crappy head cold, sore throat, snotty nose, no voice.  At least my lungs seem to be clear.  Will find out next week how my PCR numbers are.  Gah!  What a whiner.

Marnie

[LoriC14]

Hi everyone - hope you are all doing well.  It seems like ages since I have been on... guess when things get bad, i turn to folks who are going through the craziness that is living with CML.  Helps me to feel not so alone.  Marnie and Caroline's posts have really hit me hard - it's like they have taken the words out of my head and posted them here.  I was DX the end of June 2011.  Immediately put on 100 mgs Sprycel - never on any other drug.  My PCRU has been great since 2012 - so my hematologist is happy with keeping things status quo (2nd dr as my first dr retired).  2012 I started having pain, mentioned it to my dr, but really didn't stress too much as I was busy taking care of my Mom before she passed.  They gave me Hydrocodone for the pain and told me to track the pain - mainly headaches, back pain and leg pain.  In 2013 - it got really bad.  I get a bit confused and don't remember things at all - walk into a room and can't remember why I went there, my dr thinks that is age (53) and not the meds.  After coming to this BLOG which helped me maintain my sanity when I was first diagnosed, asked my dr about lowering my dosage.  He was 'reluctant' - he gave me a week's break - pain was so much better, but I couldn't say it was totally gone.  So back on to  the 100mg Sprycel I went.  I don't know if the dr thinks it's in my head or what - but after reading what you all wrote, gives me back some courage to speak up for myself... especially you Marnie and Caroline.  Thank You!  If I won't be an advocate for myself, no one else will.

[Marnie]

Hi, Lori. . .don't know if you read my latest thread about PCR results and my doc finally being o.k. with lowering my dosage.  If my doc was finally convinced that maybe people can do ok on lower dosages, then there is hope that your doc might get to the same place. 

The more personal stories I see and hear on this site, the easier it is to push my ideas onto my onc.  I respect him. . I think he's really good. . .but he is definitely conservative and uncomfortable about not following the guidelines exactly.  But he's coming around. 

Good luck!  I hope that at some point you'll be able to try 50 or 70 mg, and then see how it goes. 

Marnie

[LoriC14]

Thanks Marnie - called my onc yesterday and she is speaking with my hem and neuro... stay tuned! 

[jrsboo]

Yes, I have often used the analogy to Flowers for how it feels to use these drugs.  I can feel myself getting stupider and slower while on them.  I have a great deal of trouble with cognitive disruption on them.  The 20 mg is better.  but not like being off of them.  This is tolerable though, mostly because I have the best husband on the planet, who announced that no matter how good I feel, I never have to go back to work, that we can live off of his salary just fine.  Who SAYS that?  I am so lucky.

[jrsboo]

It is the Sprycel.  I have lots of odd words that pop up (and if you remember I was an attorney--no longer because of the effects of the drugs).

[jrsboo]

Lori: go back to your doc!  At the ASH convention in December they all talked about lowering dosages, and paying attention to quality of life.  If your doc won't lower you (and I am assuming that your numbers have been great for a couple of years), go find another doc.  Try and find a CML expert.  Travel if you have to.  There are so MANY side effects, and I am becoming convinced that there are some that are exacerbated by taking the drugs long term.  As of this, I am the only person on record who has a kidney issue directly traceable to the Sprycel, so they don't know everything yet.  I spill protein so it looks like kidney disease, but when I stop taking the drug, it doesn't happen anymore.  At 53, you should not be "losing" your facilities.  Those are the old days when doctors blamed everything on menopause!  I still get leg pain, fatigue, headaches, and tongue sores on 20 mgs.  Just not as long a cycle of everything.  Usually lasts only a day or two now instead of weeks at a time.  Good Luck.  And yes, YOU are your own best advocate.  YOU are the one living in your body.  The doctors work for YOU.

[LoriC14]

Thanks for the info Caroline - I have found some similar information on a Google thread as well.  It was a wake up call I needed.  The pain hasn't been as bad lately, so I let things slide a bit by not following up with the doctors.  Reading this and the google thread on the long term impacts of Sprycel at 100mg - the google thread was primarily on lung/breathing issues and nose bleeds (had a major nose bleed this weekend that I hard time stopping - so I got scared... again).  I definitely can't ignore  those bad days just because I am enjoying days when the pain/issues aren't so bad.  Even after 2 1/2 years, I guess I still try to bury my head in the sand sometimes and pretend I don't have CML.

[jrsboo]

Lori: as for head burying..........I still expect someone to call my name at the Onc's office and say "hmmmm, this says Mrs. Eddington" has leukemia........not Edmiston (which is my last name).  3.5 years and I still think it might be a mistake.  It is not.  I have leukemia.  And I follow up on every single twinge and weirdness..........because you just never know.  The remark that such a side effect would be "rare" has no effect on me.  I already have a rare disease, with rare side effects.  I would probably take it in stride if I started to grow a parasitic twin on the back of my arm..............now THAT would be rare.