Re: [CMLHope] Stopping Gleevec

2018-02-02 Thread L Clapp 
I was on Gleevec for about 6 years and then it stopped working.  They moved
me to Sprycel and many of the side affects, just as you mentioned, of
Gleevec went AWAY.  It was a wonderful change.  Now after 8 years on
Sprycel, they are moving me to Bosulif due to water around my heart and
lungs.  I enter a new journey but the one on Sprycel was much, much better
than Gleevec.

On Thu, Jan 25, 2018 at 11:35 AM, Jamie Tufariello 
wrote:

>
>
> On Saturday, August 5, 2017, Vivi  wrote:
>
>> After seventeen years on Gleevec, and considered "in remission," my
>> oncologist asked me if I would like to stop taking Gleevec.
>> At first glance, this sounded spectacular but then she said:
>> "you'll have to come in once a month to be tested."
>> After deep thought (about twenty seconds), I said, "Talk to me about this
>> again in ten years."
>> Has anyone else stopped taking Gleevec after years of being "in
>> remission?"  If so, how's it going?
>> What has changed in your life?  Have any of the obvious physical
>> side-effects (leg cramps, blood in the whites of your eyes, swollen eyelids,
>> abdominal fat) retreated or been reversed?
>> I'd appreciate any information other CMLers might have.
>> Best to all.
>>
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Re: [CMLHope] anemia

2018-02-02 Thread L Clapp 
Who is her oncologist because my oncologist Dr. Talpaz just moved me from
Sprycel to Bosulif. ?

On Fri, Dec 22, 2017 at 2:10 PM, Ana Burgos  wrote:

> Hello,
>
> my mum is suffering from very low hemoglobine and very low iron.
>
> any of you happen the same?
>
> another question is what do you think about bosutinib, after 14 years in
> gleevec the doc. is thinking of changing to bosutinib
>
> what about side effects comparing it to gleevec?
>
>
> thanks in advance
>
>
>
>
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[CMLHope] New drug, Bosulif, anyone on it

2018-02-02 Thread L Clapp 
Have had CML from 2004.  Gleevec to Sprycel and now they are moving me to
Bosulif 100 mg.  Anyone on Bosulif and what has you side affects been?
Thank you

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Re: [CMLHope] off Sprycel

2018-02-02 Thread L Clapp 
I had almost the exact treatment and drug changes.  I just went to the
Oncologist, Dr. Talpaz, U of M and he has taken me off the Sprycel and I am
now about to start on 100 mg of Bosulif.  Is there anyone else on Bosulif?
I would really like to know what I am about to be faced with.

On Thu, Jan 25, 2018 at 11:44 AM, Jamie Tufariello 
wrote:

>
>
> On Tuesday, June 9, 2015, Choi  wrote:
>
>> Hi, this is Choi from South Korea. One of my CML friends had some
>> problems and I just wonder who had a similar experience.
>>
>> He was diagnosed with CML chronic phase on july 2012 and started Gleevec
>> 400mg for 16 months and switched to Sprycel due to E355G mutation.
>> At that time his PCR was 1.89. He started Sprycel  and E355G mutaiton was
>> disappered. He was on Sprycel for 12 months.
>> He developed pleural effusions after 12 months of Sprycel at that time
>> his dose was 100mg. His doctor stopped Sprycel for 2 weeks and restarted
>> Sprycel 80mg for 3 months.
>> Once again he developed pleural effusions so he was off Sprycel for 4
>> weeks and restarted Sprycel 60mg until now and still had minor pleural
>> effusions.
>> PCR count was 0.37, 0.47, 0.45 and never drop to under 0.1% so his doctor
>> was considering to switch to other drugs but hesitated to switch because of
>> he had E355G mutation.
>> Is there any one who had a similar experience?
>>
>> Choi.
>>
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Re: [CMLHope] off Sprycel

2018-02-02 Thread 'Jeanie' via CMLHope 
Hi Beth
So good to hear from you. I have a new oncologist at Moffitt and they are 
moving our entire unit to another out patient building close to the Moffitt 
hospital.  
I go to a pain clinic as my onc at Moffitt wouldn't write my pain meds anymore. 
I was upset about it as it means more dr visits and more dr bills. 
The DEA has the dr afraid to write pain meds.  I wonder if anyone else on this 
group are on pain meds?   Would be a help to me to know if possible. 
Beautiful weather on its way in Florida. 
My daughter booked us a cabin in the mountains for the summer.  The Great 
Smokey Mountains. It is beautiful in June. Can't wait. 
Also going to take in St Augustine in March.  
My youngest son want to retire in Melborne Fl when he retires. 
Blessings

My Motto:
Faith and Pills
With Love
18's
Dx 1/2004 CML Leukemia
Started Gleevec 2/2004
Started Tasigna 9/2009
Started Sprycel 11/2009
Started Ponatinib 1/ 2015
New Doctor--Dr Martine Extramine
0 CBL. ABL

> On Jan 29, 2018, at 12:12 AM, Marty Gartenberg  wrote:
> 
> Lovely Beth!
> 
> 18's,
> 
> Marty
> 
>> On Sun, Jan 28, 2018 at 11:47 PM, bkbarney via CMLHope 
>>  wrote:
>> HI Choi,
>> 
>> This sounds very difficult. While your friend is not in molecular remission 
>> his blood work is stable..it has not spiked while on less sprycel. Is it 
>> possible he could go on 40 mgs or 40 five days a week and 60 two days a 
>> week? Sometimes just enough medication will keep the plural effusions at 
>> bay, while still keeping the cancer at bay as well. The risk is getting 
>> resistant, which he has already done with the Gleevec. But there are other 
>> options and another in trials that works in a different area than the other 
>> TKI's that is showing promise. So hopefully your friend can find the right 
>> med at the right dose to keep his disease in check. He may not tolerate full 
>> doses of the more recent and more potent meds..but there are several left to 
>> try. 
>> I can only tolerate 40 a day. Keeps me in check. I cannot go off med as I 
>> cannot take a high enough dose to get into that level of remission..but it 
>> works for me.
>> 
>> Others who did not tolerate Sprycel have gone on bosutinib and it has worked 
>> for them...
>> 
>> Take good care..
>> 
>> 18's hope and love,
>> 
>> 
>> Beth 
>> 
>> 
>> -Original Message-
>> From: Jamie Tufariello 
>> To: cmlhope 
>> Sent: Thu, Jan 25, 2018 10:44 am
>> Subject: Re: [CMLHope] off Sprycel
>> 
>> 
>> 
>> On Tuesday, June 9, 2015, Choi  wrote:
>> Hi, this is Choi from South Korea. One of my CML friends had some problems 
>> and I just wonder who had a similar experience.
>> 
>> He was diagnosed with CML chronic phase on july 2012 and started Gleevec 
>> 400mg for 16 months and switched to Sprycel due to E355G mutation.
>> At that time his PCR was 1.89. He started Sprycel  and E355G mutaiton was 
>> disappered. He was on Sprycel for 12 months.
>> He developed pleural effusions after 12 months of Sprycel at that time his 
>> dose was 100mg. His doctor stopped Sprycel for 2 weeks and restarted Sprycel 
>> 80mg for 3 months.
>> Once again he developed pleural effusions so he was off Sprycel for 4 weeks 
>> and restarted Sprycel 60mg until now and still had minor pleural effusions.
>> PCR count was 0.37, 0.47, 0.45 and never drop to under 0.1% so his doctor 
>> was considering to switch to other drugs but hesitated to switch because of 
>> he had E355G mutation.
>> Is there any one who had a similar experience?
>> 
>> Choi.
>> -- 
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