Javascript Disabled Detected

You currently have javascript disabled. Several functions may not work. Please re-enable javascript to access full functionality.

Life-saving cancer drug can also cause heart damage: Study

Started by CallMeLucky , Feb 16 2014 09:54 AM

Prev

Next

Please log in to reply

67 replies to this topic

#41 hannibellemo

Advanced Member

Members
728 posts

LocationNorth Central Iowa

Posted 02 March 2014 - 03:32 PM

Hi, Phil! Are those like pork rinds? I love them, too. There is no hope for me.

Glad you check in occasionally.

Pat

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.

Back to top

#42 PhilB

Advanced Member

Members
130 posts

Posted 02 March 2014 - 05:25 PM

A quick google reveals that is indeed the US name. Even more amazingly it revealed someone trying to claim that these teeth-breaking lumps of fat and salt are less unhealthy than potato chips!

I've been dipping into the boards off and on for the last couple of months, but was worried it seemed to have all got a bit serious and sensible. I was very happy to find this thread showing my BIFs back on their usual form!

Back to top

#43 Marnie

Advanced Member

Members
396 posts

Posted 02 March 2014 - 07:49 PM

Ewwww. Pork rinds look disgusting enough that I've never tried them. 'Course if you put a bit of orange dye on them, they just might look like round Cheetos. Hmmm. . .that's a thought.

No. Never mind. Pork rinds. Gross.

Back to top

#44 PhilB

Advanced Member

Members
130 posts

Posted 03 March 2014 - 03:50 AM

You're not the only one to think they look disgusting - a friend at college always used to call them 'Niki Lauder's ears' - I'l leave Simone to explain the Formula 1 reference!

Back to top

#45 hannibellemo

Advanced Member

Members
728 posts

LocationNorth Central Iowa

Posted 03 March 2014 - 12:40 PM

Susan,

So glad to hear that I'm not the only one to love sweet and salty junk food - eaten together!

On a more somber note, I'm glad your mom is coming back to her own home. Is she off all CML meds? Please keep us informed and let her know that she is in the thoughts and prayers of many!

Pat

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.

Back to top

#46 simone4

Advanced Member

Members
64 posts

Posted 04 March 2014 - 10:29 AM

Phil, it is indeed a cruel reference and I am guessing this friend of yours was James Hunt. Right?

Simone

Back to top

#47 hannibellemo

Advanced Member

Members
728 posts

LocationNorth Central Iowa

Posted 05 March 2014 - 07:17 AM

Ok, Simone, dish! (oops, forgot you are French, that means "out with it")

Pat

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.

Back to top

#48 PhilB

Advanced Member

Members
130 posts

Posted 05 March 2014 - 08:32 AM

You'll just have to watch the movie 'Rush'

Back to top

#49 hannibellemo

Advanced Member

Members
728 posts

LocationNorth Central Iowa

Posted 05 March 2014 - 05:00 PM

I didn't watch the movie, but I did google Niki Lauda and a picture is worth a thousand words!

Pat

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.

Back to top

#50 TeddyB

Advanced Member

Members
203 posts

Posted 07 March 2014 - 04:39 PM

Back on topic.......i went for my 2 year checkup this week, and i asked my onc about Gleevec and heart related incidents.

She wasnt aware of any here in Norway yet, so i will try not to think to much about this.

And, off topic again:

Cheers, and enjoy your weekend with Cheetos or pork scratchings

Back to top

#51 PhilB

Advanced Member

Members
130 posts

Posted 10 March 2014 - 12:49 PM

I had my 5 year checkup this afternoon and my onc, unsurprisingly, hadn't heard anything about dodgy Canadian mice either.

The good news though, is that I have finally got my fourth log!

I realise that 0.0095%.is to all intents and purposes identical to the 0.0108% I had last time, and that it could just as easily be back up again next time, but I don't care. I've been hunting that second zero after the point for four and a half years and I will therefore be celebrating with several glasses of something or other and large quantities of my favourite junk food

http://www.youtube.c...h?v=LarhVD5kgsc

Cheers to one and all

Phil

Back to top

#52 GerryL

New Member

Members
0 posts

Posted 10 March 2014 - 06:50 PM

Congratulations Phil.

Back to top

#53 Marnie

Advanced Member

Members
396 posts

Posted 10 March 2014 - 07:03 PM

Congratulations! I'll go pour myself a(nother) glass of bubbly. And have some cheese. . .mmm Jarlsburg. It really is amazing how great those zeros make us feel!

Marnie

Back to top

#54 hannibellemo

Advanced Member

Members
728 posts

LocationNorth Central Iowa

Posted 11 March 2014 - 03:29 PM

Congratulations, Phil! I had my 5 year checkupthis year, too - in January (a month late). That was a very good feeling in itself!

Pat

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.

Back to top

#55 Guest__*

Guests

Posted 13 March 2014 - 12:03 PM

This is my first time on this LLS discussion board. I was just diagnosed with chronic M. leukemia. I am on chemotherapy. I feel very weak. All this time I thought that I only had a few years to live, but the way you people talk, I probably will live longer. What is the survivol rate please? Does anyone know? I am very discouraged.

Back to top

#56 mariebow

Member

Members
13 posts

Posted 13 March 2014 - 12:08 PM

There are people living with this disease 20 years, according to former cml patients, with all the new tki drugs, living longer is very possible.

Back to top

#57 thomaskk

Member

Members
13 posts

Posted 13 March 2014 - 12:19 PM

Adel

I am also a new cml patient. Lucky we have excellent medicines to handle our cml. More than 95% of us will have normal lifespan. It is almost close to people living with diabetes or BP. More interestingly search for a cure is in final stage . So take your medicine s regularly and follow what your doc says

Thomas

Back to top

#58 GerryL

New Member

Members
0 posts

Posted 13 March 2014 - 06:49 PM

Hi Adela,

Welcome to the board. Which drug are you on?

Back to top

#59 Trey

Advanced Member

PS Beta Group
1,705 posts

LocationSan Antonio, Texas

Posted 13 March 2014 - 08:11 PM

There is a 90 - 95% chance of living a normal life span with CML on today's drugs if diagnosed in chronic phase.

I would suggest you read this post for newly diagnosed CML leukemia patients:

http://community.lls.org/docs/DOC-1271

Other information about CML leukemia:

http://community.lls...ttype[document]

Back to top

#60 GerryL

New Member

Members
0 posts

Posted 14 March 2014 - 01:46 AM

Hi Adela,

One of the things you need to make sure of is that you're reading current information on the Internet. There is a lot of outdated info out there. Trey has provided the links to his info, understanding the acronyms and names of things is very helpful, it will make you feel a bit more in control of things.

If you have a copy of your results, you can always post them here for Trey to have a look at, I know it helped me when I was first diagnosed to do that.