33 replies to this topic

[mike43147]

I was wondering because Gleevec stopped working for me in Feb 2010.  I was off all medication for 17 days while they ran some very unpleasant tests to determine why.   The only answer so far is the CML progressed into a different stage, no mutations or infections or if there are any they have not told me yet.  From Feb 15 to March 22 I received 17 units of blood to boost my hemoglobin.  Saw a CML specialist at the Mayo Clinic in Minnesota on March 22 follow up is next Monday, 4/18/2010, when they do a second bone marrow biopsy previous BMB was 2/23/2010. 

Trey and Phil keep the humor coming.  I read the posts every day, not much else to do since the doctors won't let me back to work.

Thanks,

Mike

[prljm10us]

wow sounds like you've been through alot!! i was on gleevec and it worked fine until i developed a skin rash then i was switched to sprycel which worked well until water started to gather around my lungs and made it hard to breath. now im on tasigna and its been working good. good luck

[Trey]

It is good news that no kinase mutations showed up.  Gleevec can stop working for several reasons, one of which is over-expression of an enzyme called LYN, and this does not show up in regular tests.  Sprycel can overcome this issue and many other Gleevec failures in many cases.  There is a very good chance that Sprycel will work for you, based on statistics from others who have been in your situation.  You should be able to continue to benefit from our therapeutic puns, paranamasias and paroxysms.

PhilB and a duck walk into a Pub.  Duck says, "hey, that's my brother on your hat!"  PhilB replies: thats not a duck, that's a.....

Phil: Over to you for the answer.

[hannibellemo]

Hi, Mike - can I call you "Mike" for short?   I also go to Mayo-Rochester for my treatment - I see Dr. Louis Letendre. As a matter of fact, I was just there yesterday for my quarterly checkup. BMB (sedated), FISH, and PCR. This will be my first major checkup since I switched to dasatinib from Gleevec due to hepatotoxicity. I was off all medications for about 2 months before I started dasatinib and had only been on it for 6 weeks at my last quarterly checkup so this one will tell the story. However, we are so positive that this will be good that he only scheduled a PCR for next time! As you may have realized - Mayo is big on FISH until CCyR.

Why do I always feel like I am tempting fate by being positive - how do I get around that?

Dr. L is very good at keeping me informed - if they had an answer for you I believe they would tell you. Sometimes mutations may not show up right away on the tests even though they are exerting their influence on the disease.  There are some very good trials available right now for treatments that are having good effect on even the most troublesome mutations.

Good luck next Monday, I'll be thinking about you.

Pat

[mike43147]

Pat,

Yes you may call me Mike. 

The Mayo Clinic is my second opinion.  I found it to be a great place.  I saw Doctor Santana, very nice person and seems to be a great doctor.  It will be six weeks since I first started taking Sprycel.  This is the best I felt in 6 months.  I hope this drug is working as I don't really like the BMT as a fall back option. 

Thanks for letting me know how things are working for you.

Mike 

[janekaye]

Hi Mike,

After about 8 months on Gleevec and horrible side effects, I switched to Sprycel.  I can't even tell you how much better it has been for me!!!  Of course there are still side effects (like rashes and for me, pleural effusion).  But so far, even those things are under control, and I feel so much better than I did on Gleevec.

My PCR has been on the decline since the switch, but like Pat, I will get to see my new numbers in about a week, so I'm anxious to see how that goes.  I have reached hematologic response and cytogenic response, but just not mmr yet.

I'll keep my fingers crossed for you.  Good luck next week - if you make the change, I hope it works for you.

Take care,

-janekaye

[Trey]

Pat,

Quote: "Mayo is big on FISH until CCyR."  After that, do you switch to tartar sauce?  Please send your recipe.

Quote: "Why do I always feel like I am tempting fate by being positive - how do I  get around that?"

Tedsey can teach you.

[janekaye]

Pat,

I beg of you! Come up with a really good answer for Trey.

His kind of humor is what keeps us all going --- oh yes, and his knowledge

too!

-janekaye

[hannibellemo]

Tartar sauce indeed - nothing but an excellent Beurre Noir will do in that situation! However, you are completely correct about Tedsey and BethG comes to mind as well.

It is a good thing that PhilB is back to throw maths and Shakespearean sonnets at you, Trey. You've been nothing but helpful while he was on vacation, handing out excellent advice, etc., etc., etc., but it was obvious that lurking very near to the surface you were in great danger of losing your humility.

Quick, PhilB, some maths!!!

Pat

[Trey]

Beurre Noir (Dark Butter) Recipe

Two table-spoonfuls of butter, one of  vinegar, one of chopped parsley, one teaspoonful of lemon juice, half a tea-spoonful of salt, one quarter of a teaspoonful of pepper. Put the butter in a frying-pan, and when very hot, add the parsley and then the other ingredients. Boil up once. This sauce is for fried and broiled fish, and it is poured over the fish before sending to the table.  Use in place of MAYO for your big FISH after you have CCyR'd it.

[PhilB]

That's not a duck, it's an ostrich feather.  I wondered if anyone had spotted the picture yet.  The National Portrait Gallery had an exhibition at Beningbrough Hall in Yorkshire last year as part of which you could dress up and create your own 'old master' portrait.

On the subject of ducks and as this seems to have turned into a cookery forum, here's one of my signature dishes - duck salad for 2:

Take a large barbary duck breast, a french loaf and salad (watercress, rocket (arugula) and spinach, tomatoes and onion would be ideal) Score the skin on the duck breast and rub with salt.  Fry it skin side down on a very low heat for ten minutes or so until almost all of the duck's fat has melted into the pan and the skin is crisp.  Turn over and cook for 1 to 2 mins on the other side then set aside to rest (the duck should still be very rare inside as the fat will have insulated it).  Fry 4 slices of french bread in the duck fat (isn't it great that Glivec lowers cholesterol?) then drain on kitchen paper and sprinkle with salt.  Thinly slice the duck breast and place on the salad.  Mop up the juices from slicing the duck with 2 more slices of bread.  Enjoy.

[Trey]

So, PhilB and an undercooked duck walk into a Pub.  Undercooked duck says, "would you eat tartar sauce on duck tartare, or would you prefer dark butter on the dark meat?"  Without allowing an answer, duck continues, saying "there is only one way a person could get an ostrich butt feather stuck on their hat...no wonder you needed to wear the cape."  PhilB answers.....

[PAMKELLAHER]

Hi,  I just switched from 400 mg of gleevec (been off of it for about 3 weeks) to 100 mg of Sprycel yesterday!  Hematological response but after 1 year still 100% leukemic cells on Gleevec.  Anyway Is it to soon to see any real side effects from the Sprycel?  Wasn't sure if they start right away or after the drug has a while to build up in your system.  Been 1 full day and everything feels okay.  Just don't want to be too optimistic too soon!  Would value any input.

Thanks,

Pam

[PAMKELLAHER]

Sorry I accidentally posted twice.  Someday I will get used to this Website!

[Michael]

Sorry, but I have all sorts of computer problems of late.

To update all on my status, I have switched from 400 mg. Gleevec to 70 mg. Sprycel once per day. The switch was necessary following a horrendous rash (errythema multiforme) that totally wiped me out. I was off CML meds for approximately 6 weeks. I began Sprycel on April 17th and so far the only side effect has been tiredness. I also had to switch from Rhythmol (atrial fibrillation med that prolongs the QT interval) to Digoxin and Atenelol. We will measure my EKG on April 22. The Gleevec had me in a Ph+ free cytogenic response in February, but after stopping it and having a March 15 biopsy, I now had 2 of 20 cells positive. The onc has started me at 70 mg. Sprycel. I hope this updates my status and I will be glad to respond to all on this subject and others. Sorry for the delay.

Michael

[janekaye]

Hi Pam,

When I made the switch to Sprycel, I had a rather rough 4-5 days - nausea,

fatigue, loss of appetite, general feeling of having a stomach flu. (As I

recall, Pat had a similar experience.)

If that happens, DON'T GIVE UP! On about day 5 or 6, I felt so much better

and it only improved from there. I've been really happy with Sprycel and

the fewer side effects.

Also, remember that everyone is different - lots of people make the switch

quite painlessly, and I hope you're one of them!

I'm sending good vibes!

-janekaye

[PAMKELLAHER]

Thanks ChrisC and Janekaye!

Took 2nd bill at 10:30 this morning and still feeling no real side effects!  Hope this lasts!  Hope it helps in killing all these little CML monsters too!  Hope you're all doing well!

Pam

[Tedsey]

Unless you guys are being sarcastic about BethG and me, I have little story from a great cognitive behavioral therapist (who has so greatly helped me to stay on the road of happiness--however, I do swerve off from time to time--but I haven't hit a tree yet!).

She told me that research supports that pessimists are probably slightly more accurate in seeing things the way things "really" are.  However, optimists, although very slightly less accurate, have happier lives, better immune systems, and report an overall better quality of life.

So, here is support for you to stay positive Pam!  We can be miserable with this monster inside us and think the worst, or we can be hopeful and snatch at anything good that pops up (a better way to live, in my opinion).  I am trying hard to snatch away, especially after non-stop calls yesterday from 9am-6pm from onc's office, pharmacy, and insurance with my kids jumping on me and screaming & crying and the baby getting a 102F temp midday and up all night.  Man, I am wasted, esp. with a mega period.  And my ANC is .6   Oy vey!  As usual, the onc's office relayed the wrong information.  And I didn't even have to take a Xanax!  But I did lose it once for a few minutes.  However, I got what I needed, that is, my shot of Neupogen.  I did it myself this a.m. (with help from a wonderful in-law).  And now I can bypass the circus to some degree next time.

Pam, I so wish you the best.  I would be just as anxious to see if the Sprycel is working.  Sending waves of good wishes and positive thoughts your way!  Rootin' for ya!  Thinking of you.

[janekaye]

I think your behavioral therapist is absolutely correct! And I try hard to

live my life that way - although, like you, I have my "relapses"

occasionally. Thanks for reminding me!

[PAMKELLAHER]

Tracey,

You make me embarrassed about all you've been through and with 2 little babies yet!!  You are an encouragement to me everyday!  Thank you so much for your input!  You are one positive mother!!  I truly wish you the best!  Next time I feel scared I'll think how afraid you must be for you and your little ones!  Thank you always and the best of luck to you!  Sprycel for the last 2 days has been reaaly good so far!

Thanks Tracey!  Best to you!!