Re: [CMLHope] Ponatinib is chemo

Beautiful doggie. 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 Doctor Balducci Moffitt Cancer Center > On Jun 1, 2017, at 12:03 PM, Marty Gartenberg wrote: >

Re: [CMLHope] Ponatinib

Yes. Thanks for sharing the slide show. 8's Richard On Monday, August 17, 2015 at 6:43:46 AM UTC-5, wa2yyx wrote: Richard, You see, I keep telling you the way it is now. All that I can see is the improvement in you. Some days may be good and some not so good but that is what life is

Re: [CMLHope] Ponatinib

Hi John and great news. I wish it was bringing my counts down. My platelets were ok but WBC went up to 12. Also Creatine was up too high. Go to Moffitt sept 3rd. I'll let you know what happens. Blessings My Motto: Faith and Pills Jeanie 18,s Dx 1/2004. CML Leukemia Started Gleevec 2/2004

Re: [CMLHope] Ponatinib

Hang in their Jeanie, my WBC are always on the low side of the scale but my creatinine is always on the high side been that way for years going as far back as 1997. greenie In a message dated 8/16/2015 1:22:43 P.M. Eastern Daylight Time, cmlhope@googlegroups.com writes: Hi John and

Re: [CMLHope] Ponatinib

Well now. I am beginning to see some positive progress within the CML community. This one is doing well because things are getting better because some of you fine people are finding their way to not being able to detect any more of those nasty cells. Others are also doing well because some

[CMLHope] Ponatinib

Hi Jeanie My last blood test was on Aug 5. I went for one month with only two pills. My platelets and wbc went down even then. So I didn't take the pill on the 6th and now I will wait until the 12th and another pill 3weeks later. So we will see what happens. Sorry your counts went up. John B

[CMLHope] Ponatinib

Hi Jeanie and everyone: Two weeks prior to last Wednesday I went on one pill a week. Last Wednesday my WB went down from 18 to 3.9 and platelets went from 63 to 18. So, now I am off the drug for three weeks. Obviously, I am very sensitive to the drug or it is very strong or both. The tweaking

Re: [CMLHope] Ponatinib

Hi John. So happy the drug is working. My reaction to the drug is very different. It has put my blood counts back in the normal range. I still take one 15 mg pill daily. My WBC are in the high normal range. Most if the side effects are gone. The doctor seems to worry about me blood

Re: [CMLHope] Ponatinib

Hi Jeanie, you seem to be doing OK. I am feeling fine. So glad that summer is on its way. Sent from my iPad On Jun 5, 2015, at 10:09 AM, 'Icandoallttc' via CMLHope cmlhope@googlegroups.com wrote: Hi John. So happy the drug is working. My reaction to the drug is very different. It has

Re: [CMLHope] Ponatinib

http://www.cmladvocates.net/3-news/newsflash/423-ash-2014-new-data-on-ponati nib-most-potent-but-overdosed good info on ponatinib In a message dated 6/5/2015 10:09:22 A.M. Eastern Daylight Time, cmlhope@googlegroups.com writes: Hi John. So happy the drug is working. My reaction to the

Re: [CMLHope] Ponatinib

Thanks for the update John. My WBC is creeping up with 1 15 mgs pill daily. Going to Moffitt next week. Will update you then. Hang in there. Prayers Blessings Jeanie 18,s Dx 1/2004 Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib January 2015

[CMLHope] Ponatinib

Hi Jeanie and the group: I had my counts done today and after four weeks off, my counts started to increase. So now I am on one 15mg of ponatinib a week. Two pills a week really reduces my counts so we will see what one pill does. I will see him again one week from today. Maybe I will just

Re: [CMLHope] Ponatinib

, 2015 4:26 pm Subject: [CMLHope] Ponatinib Hi Jeanie and the group: I had my counts done today and after four weeks off, my counts started to increase. So now I am on one 15mg of ponatinib a week. Two pills a week really reduces my counts so we will see what one pill does. I will see him again one

Re: [CMLHope] Ponatinib

Good to hear from you John. I am still on 1 pill daily and my platelets were still dropping. I've never been a sleeper and have insomnia.It seems strange when I get so sleepy can't keep my eyes open. Having eye side effect. Going to have complete eye check up tomorrow. My skin rash is

Re: [CMLHope] Ponatinib

Glad to hear about some good news from you, keep it up. greenie In a message dated 3/25/2015 10:22:36 A.M. Eastern Daylight Time, cmlhope@googlegroups.com writes: Good to hear from you John. I am still on 1 pill daily and my platelets were still dropping. I've never been a sleeper

Re: [CMLHope] Ponatinib

Thanks Greenie and how are you? I pray your news is good news. Good or bad we fight the good fight and hope to live to fight another day. Prayers Blessings Jeanie . 18,s On Mar 25, 2015, at 1:53 PM, Myvety2k via CMLHope cmlhope@googlegroups.com wrote: Glad to hear about

[CMLHope] Ponatinib

Hi Jeanie. It was such along time ago when I started ponatinib, I can't remember whether I was tired. I do have a tendency to drop off from time to time. I just turned 80 in January, so that may be part of the problem. As my hemoglobin counts go down, I certainly feel it. I go tomorrow for

Re: [CMLHope] Ponatinib

Hi John and thanks. I'm so glad the med is taking care if your leukies. My doctor said this is a very toxic med, but it is a last chance med too. I'm just happy I could get it. It cost $27,000 for a months supply but my insurance takes care of that. That is a miracle in and of itself.

[CMLHope] Ponatinib

Hi Jeanie: My counts were done last Friday. Hemo 124 plat 34 and wd can 3.2 They have not changed much in two and one half weeks. So I am off the drug for another two weeks. I am sorry you are having bad side effects. Hopefully they will subside soon. I am back in Toronto now after enjoying the

Re: [CMLHope] Ponatinib

Your counts are really low. You must count your hemo different than mine. Mine is 12. WBC 10 and platelets 151. I kept my hemo at 13 for a long time. I like for my WBC to be about 7 but after being so high I'm lucky they came down. I got some bag balm but it doesn't seem to be helping

Re: [CMLHope] Ponatinib

Hi yes we have been to the Edison estate. Maybe the counts are different in Canada Sent from my iPad On Mar 3, 2015, at 3:59 PM, 'Icandoallttc' via CMLHope cmlhope@googlegroups.com wrote: Your counts are really low. You must count your hemo different than mine. Mine is 12. WBC 10

Re: [CMLHope] Ponatinib

Hi John, my older brother lives in Naples and I live in south Fort Myers just min. from the beach. You have a nice week of weather last week it was on the cold side. Enjoy you stay. greenie In a message dated 3/3/2015 12:46:09 P.M. Eastern Standard Time, jl...@rogers.com writes: Hi

[CMLHope] Ponatinib

Hi Jeanie I am now in Naples. As We came down the highway I saw the Moffit Cancer Centre. Last Tuesday my counts were hemo 133' platelets 33, wbc 5.1. I am not seeing my onc until Mar 13, he took me off the pill. I use a lot of skin cream for dry skin and it seems to work OK. Good for you that

Re: [CMLHope] ponatinib info

Hi My eyes are more sensitive to light and I have dry eyes. I put drops of Sustane Ultra in my eyes daily. My gp said to disregard the expiry date on the bottle and discard the bottle every three after opening it. It is no longer sterile. So don't buy a big bottle. John B Sent from my iPad

[CMLHope] ponatinib info

Good evening to all, Below is some info on Ponatinib. The common side effects are listed. The most common side effects reported in the clinical trial include hypertension, rash, abdominal pain, fatigue, headache, dry skin, constipation, fever, joint pain, and nausea. So far I have the rash,

Re: [CMLHope] Ponatinib

this one will work for you in a bit of time. I am championing your warrior spirit!! Take care, 18's Beth -Original Message- From: 'Icandoallttc' via CMLHope cmlhope@googlegroups.com To: cmlhope cmlhope@googlegroups.com Sent: Wed, Feb 4, 2015 7:07 am Subject: Re: [CMLHope] Ponatinib

Re: [CMLHope] Ponatinib

championing your warrior spirit!! Take care, 18's Beth -Original Message- From: 'Icandoallttc' via CMLHope cmlhope@googlegroups.com To: cmlhope cmlhope@googlegroups.com Sent: Wed, Feb 4, 2015 7:07 am Subject: Re: [CMLHope] Ponatinib 11 years for me--still fighting !!! 9th

Re: [CMLHope] Ponatinib

-Original Message- From: 'Icandoallttc' via CMLHope cmlhope@googlegroups.com To: cmlhope cmlhope@googlegroups.com Sent: Wed, Feb 4, 2015 7:07 am Subject: Re: [CMLHope] Ponatinib 11 years for me--still fighting !!! 9th day on ponatinib. Sure hope it starts working. My onc says

Re: [CMLHope] Ponatinib

cmlhope@googlegroups.com To: cmlhope cmlhope@googlegroups.com Sent: Wed, Feb 4, 2015 7:07 am Subject: Re: [CMLHope] Ponatinib 11 years for me--still fighting !!! 9th day on ponatinib. Sure hope it starts working. My onc says it's my last choice but there is one more tki I haven't tried

Re: [CMLHope] Ponatinib

via CMLHope cmlhope@googlegroups.com To: cmlhope cmlhope@googlegroups.com Sent: Tue, Feb 3, 2015 8:31 pm Subject: Re: [CMLHope] Ponatinib Beth, get out the heating pad make sure it's a big one they make different sizes. I go fishing under the bridge going over to Sanibel sometimes

Re: [CMLHope] Ponatinib

Great news Greenie!!! Beth -Original Message- From: 'Icandoallttc' via CMLHope cmlhope@googlegroups.com To: cmlhope cmlhope@googlegroups.com Sent: Sat, Feb 7, 2015 2:02 pm Subject: Re: [CMLHope] Ponatinib Great news Greenie. You are doing fantastic!!! Prayers Blessings Jeanie 18

Re: [CMLHope] Ponatinib

, please share, I ' would like to add more options to my daily meditations. Thanks, Beth -Original Message- From: 'Icandoallttc' via CMLHope cmlhope@googlegroups.com To: cmlhope cmlhope@googlegroups.com Sent: Sat, Feb 7, 2015 2:00 pm Subject: Re: [CMLHope] Ponatinib Thanks so much

Re: [CMLHope] Ponatinib

for you in a bit of time. I am championing your warrior spirit!! Take care, 18's Beth -Original Message- From: 'Icandoallttc' via CMLHope cmlhope@googlegroups.com To: cmlhope cmlhope@googlegroups.com Sent: Wed, Feb 4, 2015 7:07 am Subject: Re: [CMLHope] Ponatinib 11 years for me

Re: [CMLHope] Ponatinib

@googlegroups.com To: cmlhope cmlhope@googlegroups.com Sent: Wed, Feb 4, 2015 7:07 am Subject: Re: [CMLHope] Ponatinib 11 years for me--still fighting !!! 9th day on ponatinib. Sure hope it starts working. My onc says it's my last choice but there is one more tki I haven't tried--bositinib--not sure

Re: [CMLHope] Ponatinib

: 'Icandoallttc' via CMLHope cmlhope@googlegroups.com To: cmlhope cmlhope@googlegroups.com Sent: Sat, Feb 7, 2015 2:00 pm Subject: Re: [CMLHope] Ponatinib Thanks so much. I do have CDs for meditation but send the site to me. I have done everything in my fight. I love the Psalms and have read

Re: [CMLHope] Ponatinib

the good fight of faith. Every day is a victory! 18's, Susan F. Zimmerman -Original Message- From: Marty Gartenberg wa2...@gmail.com To: cmlhope cmlhope@googlegroups.com Sent: Fri, Feb 6, 2015 5:36 pm Subject: Re: [CMLHope] Ponatinib Keep on going Jeanie. 18's, Marty

Re: [CMLHope] Ponatinib

: 'Icandoallttc' via CMLHope cmlhope@googlegroups.com To: cmlhope cmlhope@googlegroups.com Sent: Wed, Feb 4, 2015 7:07 am Subject: Re: [CMLHope] Ponatinib 11 years for me--still fighting !!! 9th day on ponatinib. Sure hope it starts working. My onc says it's my last choice but there is one more

Re: [CMLHope] Ponatinib

@googlegroups.com To: cmlhope cmlhope@googlegroups.com Sent: Fri, Feb 6, 2015 3:43 pm Subject: Re: [CMLHope] Ponatinib Hi John You give me hope. I'll be glad when I reach that point. Thanks. Prayers Blessings Jeanie 18's On Feb 6, 2015, at 10:19 AM, John Barrons jl...@rogers.com

Re: [CMLHope] Ponatinib

: Wed, Feb 4, 2015 7:07 am Subject: Re: [CMLHope] Ponatinib 11 years for me--still fighting !!! 9th day on ponatinib. Sure hope it starts working. My onc says it's my last choice but there is one more tki I haven't tried--bositinib--not sure if spelling. Thanks for the uplift

Re: [CMLHope] Ponatinib

: 'Icandoallttc' via CMLHope cmlhope@googlegroups.com To: cmlhope cmlhope@googlegroups.com Sent: Wed, Feb 4, 2015 7:07 am Subject: Re: [CMLHope] Ponatinib 11 years for me--still fighting !!! 9th day on ponatinib. Sure hope it starts working. My onc says it's my last choice but there is one more tki I

Re: [CMLHope] Ponatinib

about living your lives determined to fight the good fight of faith. Every day is a victory! 18's, Susan F. Zimmerman -Original Message- From: Marty Gartenberg wa2...@gmail.com To: cmlhope cmlhope@googlegroups.com Sent: Fri, Feb 6, 2015 5:36 pm Subject: Re: [CMLHope] Ponatinib

Re: [CMLHope] Ponatinib

via CMLHope cmlhope@googlegroups.com To: cmlhope cmlhope@googlegroups.com Sent: Tue, Feb 3, 2015 8:31 pm Subject: Re: [CMLHope] Ponatinib Beth, get out the heating pad make sure it's a big one they make different sizes. I go fishing under the bridge going over to Sanibel sometimes

Re: [CMLHope] Ponatinib

- From: 'Icandoallttc' via CMLHope cmlhope@googlegroups.com To: cmlhope cmlhope@googlegroups.com Sent: Wed, Feb 4, 2015 7:07 am Subject: Re: [CMLHope] Ponatinib 11 years for me--still fighting !!! 9th day on ponatinib. Sure hope it starts working. My onc says it's my last choice

Re: [CMLHope] Ponatinib

are transitioning to the new meds etc... Take good care, thinking of you. 18's Beth -Original Message- From: 'Icandoallttc' via CMLHope cmlhope@googlegroups.com To: cmlhope cmlhope@googlegroups.com Sent: Fri, Feb 6, 2015 3:43 pm Subject: Re: [CMLHope] Ponatinib Hi John You give me hope

Re: [CMLHope] Ponatinib

your warrior spirit!! Take care, 18's Beth -Original Message- From: 'Icandoallttc' via CMLHope cmlhope@googlegroups.com To: cmlhope cmlhope@googlegroups.com Sent: Wed, Feb 4, 2015 7:07 am Subject: Re: [CMLHope] Ponatinib 11 years for me--still fighting !!! 9th day on ponatinib

Re: [CMLHope] Ponatinib

) To: cmlhope _cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com) Sent: Wed, Feb 4, 2015 7:07 am Subject: Re: [CMLHope] Ponatinib 11 years for me--still fighting !!! 9th day on ponatinib. Sure hope it starts working. My onc says it's my last choice but there is one more tki I

Re: [CMLHope] Ponatinib

Subject: Re: [CMLHope] Ponatinib 11 years for me--still fighting !!! 9th day on ponatinib. Sure hope it starts working. My onc says it's my last choice but there is one more tki I haven't tried--bositinib--not sure if spelling. Thanks for the uplift. Prayers Blessings Jeanie 18's

Re: [CMLHope] Ponatinib

championing your warrior spirit!! Take care, 18's Beth -Original Message- From: 'Icandoallttc' via CMLHope cmlhope@googlegroups.com To: cmlhope cmlhope@googlegroups.com Sent: Wed, Feb 4, 2015 7:07 am Subject: Re: [CMLHope] Ponatinib 11 years for me--still fighting !!! 9th day

Re: [CMLHope] Ponatinib

: [CMLHope] Ponatinib 11 years for me--still fighting !!! 9th day on ponatinib. Sure hope it starts working. My onc says it's my last choice but there is one more tki I haven't tried--bositinib--not sure if spelling. Thanks for the uplift. Prayers Blessings Jeanie 18's On Feb 4, 2015

Re: [CMLHope] Ponatinib John

Subject: Re: [CMLHope] Ponatinib Beth, get out the heating pad make sure it's a big one they make different sizes. I go fishing under the bridge going over to Sanibel sometimes. If you do come down here we will get together that's for sure. Just get better. My son Derek's wife Ruby

Re: [CMLHope] Ponatinib

, Feb 4, 2015 7:07 am Subject: Re: [CMLHope] Ponatinib 11 years for me--still fighting !!! 9th day on ponatinib. Sure hope it starts working. My onc says it's my last choice but there is one more tki I haven't tried--bositinib--not sure if spelling. Thanks for the uplift. Prayers

Re: [CMLHope] Ponatinib

- From: 'Icandoallttc' via CMLHope cmlhope@googlegroups.com To: cmlhope cmlhope@googlegroups.com Sent: Wed, Feb 4, 2015 7:07 am Subject: Re: [CMLHope] Ponatinib 11 years for me--still fighting !!! 9th day on ponatinib. Sure hope it starts working. My onc says it's my last choice

Re: [CMLHope] Ponatinib

CMLHope cmlhope@googlegroups.com To: cmlhope cmlhope@googlegroups.com Sent: Tue, Feb 3, 2015 5:57 am Subject: Re: [CMLHope] Ponatinib Hi Beth, I received a call from my son Derek about the snow he lives in North Chicago. I hope I never have to move back north, can't handle the cold and snow

Re: [CMLHope] Ponatinib

(mailto:cmlhope@googlegroups.com) Sent: Tue, Feb 3, 2015 5:57 am Subject: Re: [CMLHope] Ponatinib Hi Beth, I received a call from my son Derek about the snow he lives in North Chicago. I hope I never have to move back north, can't handle the cold and snow. greenie In a message dated 2/2/2015 10

Re: [CMLHope] Ponatinib

cmlhope@googlegroups.com To: cmlhope cmlhope@googlegroups.com Sent: Tue, Feb 3, 2015 8:31 pm Subject: Re: [CMLHope] Ponatinib Beth, get out the heating pad make sure it's a big one they make different sizes. I go fishing under the bridge going over to Sanibel sometimes. If you do come down

Re: [CMLHope] Ponatinib John

Message- From: Myvety2k via CMLHope cmlhope@googlegroups.com To: cmlhope cmlhope@googlegroups.com Sent: Tue, Feb 3, 2015 8:31 pm Subject: Re: [CMLHope] Ponatinib Beth, get out the heating pad make sure it's a big one they make different sizes. I go fishing under the bridge going over to Sanibel

Re: [CMLHope] Ponatinib John

Subject: Re: [CMLHope] Ponatinib Beth, get out the heating pad make sure it's a big one they make different sizes. I go fishing under the bridge going over to Sanibel sometimes. If you do come down here we will get together that's for sure. Just get better. My son Derek's wife Ruby, she

Re: [CMLHope] Ponatinib

: [CMLHope] Ponatinib Hi Beth, I received a call from my son Derek about the snow he lives in North Chicago. I hope I never have to move back north, can't handle the cold and snow. greenie In a message dated 2/2/2015 10:42:17 P.M. Eastern Standard Time, cmlhope@googlegroups.com

Re: [CMLHope] Ponatinib

@googlegroups.com Sent: Tue, Feb 3, 2015 8:31 pm Subject: Re: [CMLHope] Ponatinib Beth, get out the heating pad make sure it's a big one they make different sizes. I go fishing under the bridge going over to Sanibel sometimes. If you do come down here we will get together that's for sure. Just get better

Re: [CMLHope] Ponatinib

5:57 am Subject: Re: [CMLHope] Ponatinib Hi Beth, I received a call from my son Derek about the snow he lives in North Chicago. I hope I never have to move back north, can't handle the cold and snow. greenie In a message dated 2/2/2015 10:42:17 P.M. Eastern Standard Time, _cmlhope

Re: [CMLHope] Ponatinib

That's great john!! Tkis are very expensive in the US. My Sprycel was over$10,000 monthly. I haven't gotten the price of the ponatinib yet but I heard it was high. I have Medicare part D that pays most of the cost. It hasn't worked for me yet--this is day 9--how long did it take for it to

Re: [CMLHope] Ponatinib

I was philly 100% positive until I was on ponatinib. I did then have a molecular change that reduced the Phillies to around 50%. I don't know where they are now but I will try to find out tomorrow. I can't remember how long it took to have the change, but it wasn't long, maybe three months???.

Re: [CMLHope] Ponatinib

Marty, everything you wrote is true. Stop lights and stop signs don't mean a thing here in Florida. When the light turns green and it's your turn 2 to 3 cars will run the light every time. I was hit 2 time in lest then 6 months and it was the other persons fault. But then they have no

Re: [CMLHope] Ponatinib

family. Love and 18's, Susan -Original Message- From: Myvety2k via CMLHope cmlhope@googlegroups.com To: cmlhope cmlhope@googlegroups.com Sent: Tue, Feb 3, 2015 6:57 am Subject: Re: [CMLHope] Ponatinib Hi Beth, I received a call from my son Derek about the snow he lives

Re: [CMLHope] Ponatinib

@googlegroups.com Sent: Mon, Feb 2, 2015 3:45 pm Subject: Re: [CMLHope] Ponatinib Jeanie, it's a good thing we don't get snow or ice here in Florida because the way these people drive here the insurances companies would go out of business in one day. They can't drive here when the roads are dry

Re: [CMLHope] Ponatinib

Saw the snow storm Wow Prayers Blessings Jeanie 18's  On Feb 3, 2015, at 5:29 AM, Marty Gartenberg wa2...@gmail.com wrote: Greenie, They are called Q-Tips because all that you see from behind is like looking at a giant Q-Tip. Sometimes you don't even see that. It is like the

Re: [CMLHope] Ponatinib

family. Love and 18's, Susan -Original Message- From: Myvety2k via CMLHope cmlhope@googlegroups.com To: cmlhope cmlhope@googlegroups.com Sent: Tue, Feb 3, 2015 6:57 am Subject: Re: [CMLHope] Ponatinib Hi Beth, I received a call from my son Derek about the snow he lives

Re: [CMLHope] Ponatinib

@googlegroups.com Sent: Tue, Feb 3, 2015 6:57 am Subject: Re: [CMLHope] Ponatinib Hi Beth, I received a call from my son Derek about the snow he lives in North Chicago. I hope I never have to move back north, can't handle the cold and snow. greenie In a message dated 2/2/2015 10:42

Re: [CMLHope] Ponatinib

Thanks John. I was in remission a few months after being on Sprycel. After a few months I was tested often. Then we changed it to every 3 months. It was during these 3 months that I lost my remission and my counts went way up. A blood test was taken to see if I had a mutant against

Re: [CMLHope] Ponatinib

@googlegroups.com To: cmlhope cmlhope@googlegroups.com Sent: Tue, Feb 3, 2015 5:57 am Subject: Re: [CMLHope] Ponatinib Hi Beth, I received a call from my son Derek about the snow he lives in North Chicago. I hope I never have to move back north, can't handle the cold and snow. greenie In a message dated

Re: [CMLHope] Ponatinib

Greenie, They are called Q-Tips because all that you see from behind is like looking at a giant Q-Tip. Sometimes you don't even see that. It is like the car is being driven without anybody behind the wheel. Some suddenly decide to stop right in the middle of the street for no apparent reason .

Re: [CMLHope] Ponatinib John

Hi John. Blood work wasn't good. Platelets only came down 20,000. (1505 million) WBC doubled. The doctor said this is my last chance so it's a wait and see. He was worried about my blood pressure. Does anyone take allopurinol with lisinopril? Both diuretics. Prayers Blessings Jeanie

Re: [CMLHope] Ponatinib John

Do you take a blood pressure pill also Marty? Prayers Blessings Jeanie 18's  On Feb 1, 2015, at 1:14 PM, Marty Gartenberg wa2...@gmail.com wrote: Hi John, Just so you know when you have CML then your uric acid will also usually be high. That is why you are then started on

Re: [CMLHope] Ponatinib

I have a son that has lived in the Seattle area 19 years. He says the same thing as you are saying in Fla. No one knows how to drive the hills plus the cities only a bare minimum of equipment that can't keep the freeways clean. By the way, That hugh Storm that just went through the Midwest

Re: [CMLHope] Ponatinib

I am so sorry you counts vary so much mine have been doing that now for a few years, Fri my HGB was 79.. my wbc was 1.5, .. plts was 17 .. neut 0.3... ANC 0.279 normally I would get somePLTS tomorrow but we have another big storm going to hit tonight and will have freezing rain in morning and

Re: [CMLHope] Ponatinib John

Hi John, Good to hear everything is ok. My WBC came down to 8 but the platelets remained in the millions. Some side effects--got a backache for some reason. Do you remember the side effects when you first started? Blessings Jeanie3 In a message dated 1/31/2015 11:39:12 P.M. Eastern Standard

Re: [CMLHope] Ponatinib John

Hi I do have gout but I think that is just a side effect from leukemia. I have had in the past terrible pains in my toes from gout, put not so much recently. I am growing nodules on knuckles on my right hand and on some toes. Other than that, nothing else Sent from my iPad On Feb 1, 2015, at

Re: [CMLHope] Ponatinib

My brother lives in Naples, I live in South Fort Myers min. from the beach. The weather will be Mon. 78, Tues 72, Wed 73, Thur 72, Fri 69 and Sat 68. Below normal should be in the low 80's BUT better then SNOW Greenie In a message dated 1/31/2015 11:39:12 P.M. Eastern Standard Time,

Re: [CMLHope] Ponatinib John

Hi John, Just so you know when you have CML then your uric acid will also usually be high. That is why you are then started on Allopurinol. I have been on it for more then 25 years and I hardly ever get anymore gout attacks. 18's, Marty On Sun, Feb 1, 2015 at 11:22 AM, John Barrons

Re: [CMLHope] Ponatinib John

Hi Jeanie I am allergic to allopurinol so I take colchicine Sent from my iPad On Feb 1, 2015, at 1:14 PM, Marty Gartenberg wa2...@gmail.com wrote: Hi John, Just so you know when you have CML then your uric acid will also usually be high. That is why you are then started on Allopurinol.

Re: [CMLHope] Ponatinib John

Yes I took when first dx. Now taking 100 Meg's daily. I've never had gout but my dad did. Have a good night. Prayers Blessings Jeanie 18's  On Feb 1, 2015, at 1:14 PM, Marty Gartenberg wa2...@gmail.com wrote: Hi John, Just so you know when you have CML then your uric acid will

[CMLHope] Ponatinib

Hi Jeanie: Where are getting treated? John Sent from my iPad -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to

Re: [CMLHope] Ponatinib

Hi John I go to Moffitt cancer center. How are you? Prayers Blessings Jeanie 18's  On Jan 31, 2015, at 10:47 AM, John Barrons jl...@rogers.com wrote: Hi Jeanie: Where are getting treated? John Sent from my iPad -- -- [CMLHope] A support group of http://cmlhope.com

Re: [CMLHope] Ponatinib

Hi I am OK I had my counts done last Wednesday and my platelets were 35 and white blood cells 2.8 and neutrofils were 1.5. Hemoglobin 135. I am still off the drug and have another check this coming Wednesday. I will go back on the drug then and probably at 2 or three a week. My wife and I will

Re: [CMLHope] Ponatinib

. Thanks, Beth -Original Message- From: John Barrons jl...@rogers.com To: CML Hope cmlhope@googlegroups.com Sent: Mon, Jan 26, 2015 4:29 pm Subject: [CMLHope] Ponatinib Hi I have been on ponatinib for over two years. I started at 45mg and have been on two pills a week

Re: [CMLHope] Ponatinib

: [CMLHope] Ponatinib Hi I have been on ponatinib for over two years. I started at 45mg and have been on two pills a week for quite a while. But I am so sensitive to it I can only be on it for about three or four weeks and have to go off it for two to three weeks. Right now I have been off

Re: [CMLHope] Ponatinib

people's doctors who are willing to do dosages that simply work for a patient but are not the standard. Thanks, Beth -Original Message- From: John Barrons jl...@rogers.com To: CML Hope cmlhope@googlegroups.com Sent: Mon, Jan 26, 2015 4:29 pm Subject: [CMLHope] Ponatinib Hi I have

Re: [CMLHope] Ponatinib

I get tested every week to two weeks. Mostly every two weeks, but it depends on whether I am taking two or three pills a week John Sent from my iPad On Jan 27, 2015, at 6:40 AM, ICANDOALLTTC via CMLHope cmlhope@googlegroups.com wrote: Hi John and thanks so much!! I hadn't heard from

Re: [CMLHope] Ponatinib

Thanks John I hope I can get down to a few a week. Glad to meet you. Prayers Blessings Jeanie 18's  On Jan 27, 2015, at 9:32 AM, John Barrons jl...@rogers.com wrote: I get tested every week to two weeks. Mostly every two weeks, but it depends on whether I am taking two or three pills

Re: [CMLHope] Ponatinib

Hi John and thanks so much!! I hadn't heard from anyone who is taking the drug. I was on Hydrea and I think the dr thought that would bring my platelets and wbc down but it didn't. This is good news! Maybe this will bring them down for sure. How often do you get tested? Thanks again,

Re: [CMLHope] Ponatinib

...always curious about people's doctors who are willing to do dosages that simply work for a patient but are not the standard. Thanks, Beth -Original Message- From: John Barrons jl...@rogers.com To: CML Hope cmlhope@googlegroups.com Sent: Mon, Jan 26, 2015 4:29 pm Subject: [CMLHope

Re: [CMLHope] Ponatinib

Hi I go to Princess Margaret Cancer Hospital in Toronto. It is one of the largest cancer research hospitals in the world. Sent from my iPad On Jan 27, 2015, at 11:35 AM, 'Icandoallttc' via CMLHope cmlhope@googlegroups.com wrote: Hi John Where do you get your blood tested? Do you have a

Re: [CMLHope] Ponatinib

Hi John Where do you get your blood tested? Do you have a cancer center there? I go to moffit to get mine done It's a big cancer center. Prayers Blessings Jeanie 18's  On Jan 27, 2015, at 9:32 AM, John Barrons jl...@rogers.com wrote: I get tested every week to two weeks. Mostly every

Re: [CMLHope] Ponatinib

To: CML Hope cmlhope@googlegroups.com Sent: Mon, Jan 26, 2015 4:29 pm Subject: [CMLHope] Ponatinib Hi I have been on ponatinib for over two years. I started at 45mg and have been on two pills a week for quite a while. But I am so sensitive to it I can only be on it for about three or four

Re: [CMLHope] Ponatinib

but are not the standard. Thanks, Beth -Original Message- From: John Barrons jl...@rogers.com To: CML Hope cmlhope@googlegroups.com Sent: Mon, Jan 26, 2015 4:29 pm Subject: [CMLHope] Ponatinib Hi I have been on ponatinib for over two years. I started at 45mg and have been

[CMLHope] Ponatinib

Hi I have been on ponatinib for over two years. I started at 45mg and have been on two pills a week for quite a while. But I am so sensitive to it I can only be on it for about three or four weeks and have to go off it for two to three weeks. Right now I have been off it three weeks as I was

Re: [CMLHope] Ponatinib

-Original Message- From: John Barrons jl...@rogers.com To: CML Hope cmlhope@googlegroups.com Sent: Mon, Jan 26, 2015 4:29 pm Subject: [CMLHope] Ponatinib Hi I have been on ponatinib for over two years. I started at 45mg and have been on two pills a week for quite a while. But I am so

Re: [CMLHope] Ponatinib

Hi John, What happened to you on sprycel? I have been on it for 5 years. Headaches and sinus pain has been my main problems on it. Jeanie Sent from my iPhone On Oct 22, 2014, at 7:13 PM, John Barrons jl...@rogers.com wrote: Hi Jeanie: Thanks for your support. I have been on gleevec and

Re: [CMLHope] Ponatinib

Hi I had severe water retention. I then went omacetaxine which is injected by me for a while. But that was a problem and I went on ponatinib. For two years now it has been doing OK. It really suppresses the production of red blood cells, platelets and white blood cells. My doctor said most of

Re: [CMLHope] Ponatinib

Hi John and thanks, I haven't had the PE so far. I've been fighting for 10 years now and am thankful for the meds. Tasigna was the worst for me and it never did work. Although Gleevec had many bad side effects I was on it for 5 years as the first drug available in 2004. Good luck, Jeanie

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