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Very frustrated with results


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#21 Dina36

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Posted 22 March 2012 - 11:17 PM

Hi Lucky,

Sorry to hear that you are frustruated with your latest results,

lets hope that your next one we'll be a reason to celebrate again.



#22 GerryL

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Posted 22 March 2012 - 11:32 PM

Hi Josie,

Doc has already offered to swap me to Tasigna if I'm not liking the Gleevec side effects. He's not keen on Sprycel due to PE issues. I figure I know what I get from Gleevec so will stick with it and look to do a lower dose if I can maintain my PCRU

Where are you at in regard to stopping for baby making?



#23 pamsouth

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Posted 23 March 2012 - 10:25 PM

Lucky,  I gotta say I agree with your doctor.

I went to a seminar tonight held by the LLS called "A meeting with the Experts."

We had a nice buffet and all. 

Each expert spoke on the different blood cancers, then divided us up into groups, to ask the expert question.

I asked the question about the PCR and Fish.  Regarding the PCR.  He said don't get to concerned when they wave up and down a little, no big deal.  You can keep taking PCR test  everyday and they can fluctuate.  It is when it is a steady trend up, up, up over a long period of time.  I found it kind of interesting that he doesn't even do the fish, PCR only!

I had an appointment with my new CML Oncologist last Monday.  I  discussed with him some of the stuff on the  board.  Mainly about patients, doctors, switching their drugs around. I mentioned  all TKI have their own demons.  He said I wouldn't want to do any switching of drugs unless there is a real reason/need.

I told him about the board and mentioned some of the different TKI and patients complaints.

I also mention when I went to my previous oncologist and my labs were sent out state and we got some odd pcr labs back, they went way....... up and a week later ( a repeat in case of error) they went way....... down , and even then the number were odd, couldn't have been right.

The good doc said he got another new patient complaining about the same thing.  I forget which lab they were sent to but it was out of state.  I know my were out of state from Indiana to New Jersey and NJ had changed their metric over to IS scale.

I told him I wouldn't want to touch Sprycel.  People getting fluid in their cavities, then have a year or two of what they thought was good, only to have more issues with fluid and such, then change drugs and still have on going issues from the previous drugs. 

I told the experts, tonight, It seems as if on this board, the doctors are switching patients, off Sprycel after a year or two, they have side effects at first then they go away, then after a year or two they come back.  He said some of these Doctors don't know what they are doing, make sure you go to an Expert.  He also said some of these drugs are fairly new and we don't know things excepts as time goes along.  He also mentioned people don't take their drugs like they are suppose and they won't tell their doctor because they are embarrassed.

The above is paraphrased, I didn't take a tape recorder.

Remember All TKI have their Demons.  If I really, really, really needed to switch, I mean my life depended on it, I would otherwise I live with the side effects I have.

There were others there that had been on Gleevec for a long......... time and they were doing good, some side effects but we all have them.

Praying for wisdom, peace, and guidance for you.  Sometimes this journey seems like a rollin coaster ride.  I was at the point I was blaming gleevec because I have tenteniitis in my left arm and hand from painting and steaming the floors.  Also got to bad teen need to have a root canal and the other tooth has nerve damage.  If I didn't have CML I still would have tentinites and two bad teeth.

PamSouth

As for me I wouldn't touch Sprycel.  I do believe


PamSouth


#24 Guest_billronm_*

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Posted 24 March 2012 - 12:22 AM

Dear Lucky,

  I want to make you feel better, but I really don't know how. You have so much going on right now that I believe the only thing that will help you is time. You are grieving. For yourself, for your wife,for your family, for all your losses, for your health, for what has been happening to our one (Safe Place).

I haven't been on this site as long as some of you. Nov. 2010! was when I found my new family. I was dx Aug.2007. So I was pretty much on my own until I litterally stumbled onto this site. I am such a computer idiot all I knew was how to turn my computer on send E-mails and try to look up recipes on the internet. And that's it. But for some reason I was led to this site. It was amazing,reading all of your posts and seeing what good friends you were I thought you all really all knew each other personally. I felt more alone than ever.(and scared) I had no one to talk to and I had so many questions!  I was so excited I wouldn't turn my computer off because I was afraid I wouldn't be able to get back to this site. Then I learned how to join the site yahoo. So I finally joined, but didn't post anything but I did let my computer sleep for a while. The next day I went to log in and I was denied. I was devastated, I tried for 2 days nada. I finally contacted lls I still don't know how but they told me what I was doing wrong they said my user name was my e-mail address. Well stupid me I always used my mothers name as my user name. Why the hell did they wan't me to use my e-mail address as my user name? Why didn't they ask me for my e-mail address?

  I never did figure out how to read my bw, or pcr,mmr,123log reduction or what pcru,or iou or whatever that stuff means. I'm the type of person that if I understood all that stuff I'd be writing my obituary weekly. All I know is my bcr-abl has been zero for almost 2 years. Whatever that means. I know I'm anemic and my iron level is low but getting better so I'll let my onc deal with that. And that's the only way I can deal with this cml. Now if I get a phone call tomorrow from onc you better believe I'll be here with 490 medical books for Trey & You to decipher for me.

   The bottom line Gary Is, I'm not throwing a pity party,but for some reason I have had the most horrible tradgedys happen to me immaginable, over and over. But somehow someway I got through them, I truly don't know how, but I have a lot of faith, and I am always guided to a special place (like this site) who can help me heal. I truly hope that what has happened these last few days we can all put behind us. I have gone through something similar, and the best way to get over it is just ignore it. Or it will destroy us. So let this be the end of it, that's the best way to get rid of a bad seed.

  I'm depressed I wrote a reply on woof woof's post about energy drinks to Judy, I wan'ted to lighten things up and with all this crap today nobody read it. It's about all the meds we take, and how our bellys respond, let's all put in our suggestions!!!!  It'l be fun Love Billie

  Gary,  We are all here for you forever.  For about 5 minutes today I got scared. But to everyone else we are all here together forever,just like before. And as Chris C said carry on!



#25 jjg

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Posted 24 March 2012 - 06:30 AM

Hey Gerry thanks for asking. Well I was on 800 glivec for 3 months and 1 week and it was really hard, but we got what we wanted PCRU (< 0.003 IS) at 12 months!!! My PCRU date just happens to be my birthday, so this years birthday present was just a little better than last years when I had a minor operation and started glivec the next day. Peter Mac is taking simply ages to process the PCRs so it was 5 weeks until we found out. We all would have preferred I was younger and could have 2 years at PCRU, but I'm not and so it was 5 weeks. I'm  4 days into washout and rediscovering what it like to be human. I'm currently having nasty root canal pain, maxing out on nurofen plus AND I feel so much better than on 800 glivec. In the end the specialist  said he would have switched me to 2nd gen TKI except it would be for such a short time we wouldn't see enough benefit to make the switch side effects/risks worth it.


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


#26 GerryL

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Posted 25 March 2012 - 07:26 PM

Hi Josie,

Good news that you got your PCRU and are able to start putting your plans into place. I'll be keeping my fingers crossed and hopefully in about six months you'll be able to report that you're safely past the first three months of your pregnancy.



#27 jjg

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Posted 25 March 2012 - 10:25 PM

Thanks Gerry,

I saw the fertility specialist today (after seeing the 'poop' doctor who ordered a colonoscopy...sigh and before seeing the dentist who cut my gum to drain swelling... sigh again). The FS estimated that we have a 50/50 chance of a successful pregnancy. So lots to be hopeful for and some reason for caution. Now off to enjoy being glivec free!!!


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





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