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Am so nervous,changing to Sprycel from Gleevec...

Am changing to Sprycel but am very nervous bout it...body gotten used to Gleevec,now another onslaught!Dear God!just hope it works better and that I have less sides...just needed share this,hope that’s ok...

 

Hiya Tanya,I am in the same situation as you .I think Imatinib May have  stopped working for me 2 small rises in BCR- ABL But I was on Antibiotics so I think a rise could be possible .So I am going to have one more test to see if it has risen again and had a bone marrow test done yesterday then I will know for sure .Nurse explained all the side effects we could have which are bloody scary but of course we have read everyone's experiences on here too ,some bad but a lot are good so who knows .Yes I am very scared too because I have coped with Imatinib well after sorting the usual loo situation out ,getting a bit of a rash and coping with fatigue ,I am 14 months in .So I wish you well in your change over take it at night and maybe you will sleep thru some of the side effects .Keep in touch and if I change over too we can compare notes haha .Good Luck, Denise.

 

Thank you Denise,I appreciate your response and yes,please stay in touch and let me know if you changeover to Sprycel.

Hi Tanya, 

I changed from Imatinib to Sprycel nearly 7 years ago as my counts had plateaud (is that a real word?!) at 0.4 for about 6 months after 18 months on Imatinib.  I have had no problems with it at all, touch wood, and was on 100mg for 5 years then 50mg for 2 years, my counts stayed between 0.008 and 0.002 at both doses.  Am now trialling TFR and after 3 months am still at 0.005.  It is more potent but does more to prevent CML than Imatinib and quicker, deeper responses if tolerated.

Hope it goes well and know everyone react differently to the drugs.

Cheers

Ian

Tanya, as I've said before, Sprycel was a godsend to me after the same sort of troubles with Gleevec you have been having.  I went straight from one to the other, no transition period, and never had a headache or any GI troubles.  Everything that had gone wrong with Gleevec got steadily better on Sprycel.  It hasn't been absolute heaven:  I did have a strange recurring months-long rash with peeling about a year in, but only twice and only on my torso, and it went away completely and never came back.  I treated it myself with ordinary moisturizing cream.  I did develop pleural effusions several years in, and yes, that's an adverse event one has to take seriously, but I've so far been able to stay at 0.006% IS on 20 mg Sprycel and a very small residual effusion that gives me zero symptoms and is stable.  So - trytrytry to have an optimistic attitude going in. That's half the battle.  Pulling for you!

Thank you dear CML friends for all of that!Will take Sprycel with hope,then!Will let you know how it goes when I start it and much love and thanks to all!

Tanya - what dose are they going to have you start?

Scuba I got her to start me on 70 like you suggested,(she wanted make it 100 but I got her to change her mind:) then I have blood test and see her in a month and said I want to drop it to 40(like you said too:).What should my bloods indicate to her that she should drop it?Also I sent her some info.you had all about Sprycel and the lesser dose...Am nervously waiting for script and taking copious amount of anything to feel better...would love to take a drink but am recovering Alcoholic as well...Thanks for listening,Scuba and any advice I will take it on🙂

Scuba

just got script in mail and she has written 100mg daily instead of 70mg so don’t know what to do now...bloody doctors!any further suggestions friend ?

Tanya

Hiya Tanya,As you say bloody doctors just don't listen, just had a situation with my consultant too. She Obviously doesn't like being told what to do ,but stick to your guns and just ask her to change it .Good Luck ,Denise.

 

Thank you and yes,will do

Hi Tanya,

She agreed to start you on 70 mg so should be no problem asking her to rewrite it for 70mg.

Perhaps you can use the current script and tell the pharmacy it is supposed to be 70 and to verify with your doctor.

Studies have shown now that 70 mg is fine as a starting dose, so yes, pursue getting that.  But I would caution you to put the brakes on further reduction UNLESS AND UNTIL the following:  If you have severe, intractable myelosuppression then you will need to stop, let things return closer to acceptable, then try again, possibly at a lowered dose, like 50 mg.  Absent SEVERE myelosuppression and any other EXTREME side effect or adverse event, you should wait until you get a very good response and it's stable.  That means at least MMR and through several PCRs.  I can't stress this enough:  FIRST you clonk the CML to smithereens and THEN you can reduce dose.

http://www.bloodjournal.org/content/130/Suppl_1/1611?sso-checked=true

https://www.thelancet.com/journals/lanonc/article/PIIS1470-2045(18)30359-0/fulltext

https://www.ncbi.nlm.nih.gov/pubmed/29723397

"CONCLUSION:

Dasatinib 50 mg daily is active and well tolerated in patients with newly diagnosed CML-CP. It should be further explored as a new potential standard-of-care option for chronic myeloid leukemia. Cancer 2018;124:2740-2747. © 2018 American Cancer Society."

https://learningcenter.ehaweb.org/eha/2018/stockholm/216328/jangik.lee.t...

"Conclusion
The higher Dose/BSA of dasatinib not only increased the chance of DLT occurrence but also decreased the probability of MR achievement. It appears necessary to administer a lower initial dose of dasatinib to an individual patient in order to achieve a higher MR as well as to keep a lower rate of DLTs in the treatment of patients with CP-CML."

Ok and thanks for that.

I used to cut my 100mg tablets in half with a tablet cutter. enlightened

But how do I make it 70 mg from 100 mg tabs?it would not be easy...

You should not try to split 100's to try to make them 70's.  As I understand it, you have either not even started Sprycel yet or just have - better give the 70's (or 100's) a good go for a few months and see how your PCR does.  You have plenty of time to consider reducing the dose.  I know it's hard, but try not to worry about the what-if's - you can worry when and if, you know?  Try to think:  The Sprycel is going to kill the CML like crazy, I'm going to feel and look better, and I'm going to get on top of this bump in my life.  My next PCR is gonna be great!  

Awesome response!Thanks again Kat!much love❤️❤️❤️

I am going to start myself on 50mg Sprycel tmorrow,against my doctors knowledge,and get blood test and follow up with her in a month and see how it’s going.Everything I have read seems to say that less is best so here’s hoping!Will keep you informed as to how it goes.Thanks for hearing me again.

Dear Tanya

I can definitely identify with all the emotions you are experiencing since I moved to imatinib from dasatinib last year.  The anxiety is overwhelming... but in my case, there was no need to worry because I have (so far, touch wood) responded to imatinib with few side effects.  What was wonderful to me was how my side effects on dasatinib vanished and how much better I felt!  So it can be a good thing.  

Please let us know how you get on.  Best of luck!

Martin

Glad you've decided on your course - I think you will be successful at 50 mg.  However, it makes me a little nervous that you are not telling your doctor what you are doing.  The trust thing only works as a two-way deal.  If you feel strongly about starting at 50 mg, and she won't agree to it, then either you switch doctors or you knuckle down and do what she advises for awhile.  I don't want to unnerve you, but that's my take.  I wish I could dispel the anxious urgency and hurry I sense you feel - all I can assure you is that you've got time to revisit all this and tweak it, but first you have to try it.  If she's willing to start with 70 mg, take it and see what happens (it's going to be good, I think).  If she insists on 100 mg and you're seeing her in a month, she will catch any myelosuppression happening on that dose.  This is not a final exam - you get do-overs!  

Love your hopeful positivity Kat,I can be so overly dramatic with my thinking and need learn to just trust the process...my doctor did say I could start on 70mg and now she’s gone back to 100 mg I am going to start the 50mg and see how I go then see her one more time and change doctors closer to where I now live.I feel at ease regarding the decision and your contact helps too! Much love and thanks and hope yr doing well!

 

Thanks heaps Martin,that has eased my anxiety and fears as well!You are kind and hope yr doing well! tanya

Thanks for that Ian,hope it works as good for me as it has for you.

Hiya Tanya ,Just checking up on you to see how you are feeling on your new meds ,hope you are feeling ok.Havent started on mine yet ,Denise.

 

Hey Denise,started on Sprycel 50 mg.Have taken 4.Dont see doctor til end March so hopefully results will be good!Have been feeling bit weird in them,itchy scalp emotional and bit depressed but taking them at night with magnesium and tumeric..Havi g hot/cold sweats too,which is unpleasant but just trying ride it out for now...Thanks for asking after me and how are you doing?

Hi, saw my doc,had lots of blood tests including HIV and all the Hepatitis ones goodness knows why and an ECG to see how I am doing before starting on new meds .She wants to start me on 100 mg and I said no because of toxicity so she was going to check with another consultant and get back to me ,don't know what to do if he agrees with her.Havent bought Magnesium yet haven't chosen which brand to go with all the reviews are so different .Hope your side effects wear off soon and you can get on with your life .Keep ya chin up chuck .x

Magnesium citrate is good form to take.Had enough of feeling unwell quite frankly...hot cold anxious depressed hair loss aches all over early menopause etc.The good things are that there is hope for us all to live long lives,to be possibly in remission enough to stop meds,but having said all of that,Ivstill would’ve liked life to go bit differently..Need remain grateful...