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#21 Marnie

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Posted 05 November 2011 - 09:53 PM

No more chocolate, please.  I can't button my pants any more!!



#22 Guest_billronm_*

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Posted 05 November 2011 - 10:47 PM

My dear Marnie,

  With Sprycel,and menopause give it up. Just go buy elastic waist pants. This bp medicine is killing me I'm walking around like a Zombie. I called my pharmacist he said I should get used to it eventually.

Thanks Buddy. Oh God chocolate fondue sounds so good I never had it. I guess Ron will be hitting Steffanellis first thing Monday morning. Are you feeling okay? You have about a week then it starts all over. I remember like it was yesterday.This bp med can cause deppression great. At least now I can claim my crying jags on my meds.   I had one because I burnt my toast. Well after next week I should know if we'll make it to Fla. by Thanksgiving. If we don't leave by the 19th then I don't want to go until after Thanksgiving. That traffic is horrendus anyway and Thanksgiving Holiday no way will I travel then.  Sanibel Island is way down south in Fla. So once we finally get to Jacksonville we still have 11 more hours driving time. I can't believe i'm doing this again! I want to fly but Ron wo'nt. And we would never put Annie through that. I can't let him drive all that way by himself I would feel to guilty. I'll keep you updated.     lol Billie               



#23 pammartin

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Posted 05 November 2011 - 11:15 PM

Oh Billie, I am so jealous, Sanibel Island is one of my most favorite places in the entire world.  It is sugar white sand, miles of endless beaches, and  untouched/developed beauty.  I hope you take LOADS of photos!



#24 GerryL

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Posted 15 November 2011 - 05:54 AM

Just thought I'd briefly cover off my appointment with my Hematologist (he is a lovely man and I'm glad I was able to become a patient of his).

He told me I was in remission, didn't like to correct him with the word response. He deals with a lot of different types of leukemia, so not sure if it is because of that, or he uses the word remission because he thinks I would understand that better. I just smiled when he said it.

Good news is I bought up the potential of reducing the dosage in a couple of years, if I can keep the PCRU. He is okay with it, in fact I think he likes the term "maintenance" dosage. I think he said he only had one other patient on a reduced dosage. Normally he transfers his patients to another TKI if side effects are intolerable.

We talked about the other two TKIs, I said I wasn't keen to move to them as my current side effects are also caused by Sprycel (fluid retention) and Tasigna (skin issues). He feels Tasigna is the best option all round - better than Gleevec, and it will probably become the first line of treatment in Australia replacing Gleevec. Tasigna also shows less side effects than Gleevec. I'm still not sure about it. He was also a little bit concerned that I was needing to take a fluid tablet 3 or 4 times a week. Note: I took one this morning but between the heat today and the ham, cheese and tomato sandwich I had for breakfast my ankles are a bit puffy tonight, so I would not be looking to switch to Sprycle unless I really had to.

My doc is off to a world conference on CML in a couple of weeks - darn I might have got some more info out of him if my appointment was a couple of weeks later. I asked him whether he had heard anything on the South Hampton vaccine trial - he said there were several vaccine trials going on at the moment, but he doesn't think anything will come out of it at the moment.

He also commented that it is his belief that most people will not be able to stop taking their TKI.



#25 Fas

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Posted 15 November 2011 - 05:19 PM

Hi Gerry,

I am a newbie to these boards and do not know the road you traveled to get to your new, wonderful destination, but I wanted to offered my very best wishes and congratulations on your good news.  By all means celebrate the moment. 

Fran



#26 jjg

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Posted 15 November 2011 - 06:52 PM

Hi Gerry,

I missed (somehow) your recent PCRU news. That is fantastic!

When the last set of recommendations came out in July for the PBS (for our American friends that is the Pharmaceutical benefits scheme in Australia) both Tasigna and Sprycel were on them: http://www.pbs.gov.a...recommendations

NILOTINIB, capsule, 150 mg (as hydrochloride), Tasigna®

Novartis Pharmaceuticals Australia Pty Ltd

Major submission

Chronic myeloid leukaemia

Extend the current Authority required listing to include treatment of newly diagnosed patients in the chronic phase of chronic myeloid leukaemia expressing the Philadelphia chromosome or the transcript, bcr-abl tyrosine kinase, and who have a primary diagnosis of chronic myeloid leukaemia.

The PBAC recommended listing on a cost-minimisation basis compared with imatinib 400 mg.  The PBAC considered that the
equi-effective doses are nilotinib 553.9 mg and imatinib 423 mg.

DASATINIB, tablet, 20 mg, 50 mg, 70 mg, 100 mg, Sprycel®

Bristol-Myers Squibb Australia Pty Ltd

Major submission

Chronic myeloid leukaemia

Extend the current Authority required listing to include  treatment of newly diagnosed patients in the chronic phase of chronic myeloid leukaemia expressing the Philadelphia chromosome or the transcript, BCR-ABL tyrosine kinase, and who have a primary diagnosis of chronic myeloid leukaemia.

The PBAC recommended listing on a cost-minimisation basis compared with imatinib 400 mg.  The equi-effective doses are dasatinib 93.88 mg and imatinib 395.77 mg based on the average doses from Study 056.

But then when the new listings came out a little while ago as far as I could see they were not there. Still if we are talking about cost-minimisation, regardless of clinical benefits, you'd have to think it is only a matter of time. If they were listed we could swap across and try on the new side effects, kinda like shopping for a new outfit.

J


Dx Dec 2010 @37

2x IVF egg collection

Glivec 600 & 800mg

PCRU March 2012

Unsuccessful pregnancy attempt - relapsed, 3 months interferon (intron A), bad side effects from interferon

Nilotinib 600mg Oct 2012

PCRU April 2013, 2 years MR4.5 mostly PCRU with a few blips

April 2015 stopped again for pregnancy attempt (donor egg), pregnant first transfer, 0.110 at 10wks, 2.1 at 14wks, 4.2 at 16wks, started interferon, slow dose increase to 25MIU per wk, at full dose PCR< 1 for remainder of pregnancy

Healthy baby girl Jan 2016, breastfed one month

Nilotinib 600mg Feb 2016

MMR May 2016

PCRU Feb 2017


#27 GerryL

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Posted 15 November 2011 - 07:29 PM

Hi Fran,

Thanks for the good wishes.



#28 GerryL

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Posted 15 November 2011 - 07:39 PM

Hi Josie,

My doc also mentioned that two of his patients on Sprycel have Pleural Effusions - definitely will look to avoid this drug if I can.

f I knew I wouldn't react to Tasigna, I might give it a go - but I've managed really well on the Gleevec, I figure I can last out two years then cut the drug back (if I can stay at PCRU) and hopefully the side effects will disappear with the reduction. I feel even better now I have a potential plan in place.

Have a talk with your doc to see what she considers the requirements would be for you to switch to Tasigna (I got the impression this time round with my doc, that it would be easier to switch). The Tasigna should be able to work quicker to get you to where you want to be and hopefully the side effects would be even less than the ones from 600mg Glivec.



#29 pammartin

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Posted 15 November 2011 - 08:31 PM

Congratulations on the great results!  I want to know what kind of cheese with that ham and tomato sandwich, so far it sounds wonderful!



#30 GerryL

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Posted 15 November 2011 - 11:30 PM

Probably swiss - I bought the sandwich so don't really know, but they are really nice toasted. Unfortunately cheese and ham have salt in them, but you balance what you enjoy against the results you may feel later LOL



#31 pammartin

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Posted 16 November 2011 - 02:50 AM

Sounds heavenly toasted.  Balance, I think I tend to tip the scale on a daily basis, character flaw. hehe






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