74 replies to this topic

[kat73]

I hope you will get no harsh words here.  We are all rooting for you!  Keep us posted every step of the way, OK?  (Well, all right, not EVERY step of the way . . . !)

[VickiW]

Mine too!!!  I know exactly what you mean.  (Not the baby thing, a little old for that, hehehe) I too did not make my decision lightly.  I had badgered my onc for his blessing for over a year then last fall he went to the "big" conference and met first hand with those on the forefront of TFR and the new protocols etc.  The next time he met with me, he gave his blessing IF I did it within a clinical trial.  We worked for months but that couldn't be worked out because of distance, requirements, etc.  Long story short, new information, study results, protocols,,,,,and he finally relented and said the decision was mine.  That's when the twinge of "what the &^%$ are you doing?" and I almost backed away but then I remembered my own words about being the poster child for trying and about how would we know if no one tried and this being my way to "pay it forward" for all the brave souls that did the first TKI trials that got me to this point.  I don't want to hear all the negative stuff either.  I am fortunate actually that no one near me really understood (or asked too many questions) so there has just been mostly silence and that's the way I like it.  I hit some negative reactions on another thread but I think this is definitely our safe place. 

 

Nothing but good thoughts and prayers for you, and your other half, from me!!!  What courage!  And what an amazing ride you both are in for!  By this time next year I am expecting to see lots of beautiful baby pics!  In the mean time, if I can do anything to help, listen, whatever, I'm here, as I am certain lots of others are. 

[gerry]

Hi frogiegirl,
Good luck with the cessasation and pregnancy. Fingers crossed you fall straight away.

[Gail's]

Great news Vicki and Jessica. I'm looking forward to the new baby, so yes, keep us posted on your progress!

And one last thought, I think it's horrible that people stay away from this site due to criticism of their chosen course. Everyone has the right to choose or refuse treatments or make a choice in between. The black and white thinking is not helpful and our unique voice or choice should be celebrated, not put down. We are here for support.

[Melanie]

Congratulations VickiW on your cessation! Very happy for you and it's great that you have an oncologist who cares so much! What a blessing and comfort that must be to you!

Frogiegirl, so excited for you to be moving forward with your baby plans. Praying your world is filled with only positive people and attitudes! Hope you keep us updated on your journey!

[VickiW]

Thank you Gail and Melanie 

It really does mean a lot to have a "safe" place to share my journey.  Not just for those on "my" side of this fence of course!  I am also eager to hear from everyone about where they are and what they've learned (good and bad) and hopefully I will be able to help someone else.  I was initially very excited to share my decision and actually a bit blindsided by the reaction but now I think I understand.  I didn't before or I would have been more sensitive and a bit less "enthusiastic".

 

 And for Trey, yes, I really do understand the odds and really do get that a "forever" remission may not be in my future. You would have to know me and my history to "get" why I am able to see how I could be one that beats the odds.  (I've done it already, more than once).  I appreciate you being the "ying" to my "yang".  The balance of showing both sides truly is important.  I did my own due diligence independently (did I mention my veterinary background?) but others may be turning here for answers to their science based questions.  Sometimes I forget that.  

[SUE]

Best of luck, VickiW and Frogiegirl.  

 

Sue

[jjg]

Good luck VickiW and Frogiegirl.

Frogiegirl don't forget to enjoy the drug free time, everything else is outside your control. I'll be thinking of you and hoping to hear news (good news hopefully but feel free to share the not as good).

[Frogiegirl]

Thanks for all the support! To say I'm scared, nervous, and excited is an understatement:) I was hoping sir Trey would have two cents to put in, any advice for me moving forward maybe? We will be doing cbc and bcr_abl monthly. Oh and iron free prenatals. The iron is not kind to me;) I also think I will start Journaling to keep track of everything, maybe it would help a mom to be in the future with cml? Thoughts?

[Trey]

FG,

As you said earlier, it is a very personal decision.  You weighed the risks and made a decision.  Life is a series of calculated risks.  Don't look back, or else don't do it, one or the other.

 

That was only worth 1 cent.  So I owe you 1 cent.

Edited by Trey, 08 November 2016 - 08:42 PM.

[Frogiegirl]

I'll take the 1 cent. ...may need it for diapers;)

[jjg]

FG

I didn't journal, I did think about it though and it could be useful for others. Two reasons why not - for me it would have concentrated the uncertainty and made me more fearful. Secondly once I started interferon and got up to the dose that worked for me I didn't have the energy.

I think that the trick is to make the decision and then believe there was never a choice.

[Frogiegirl]

JJG I am trying to remember your stats as far as your response, and when in your pregnancy you had to go on interferon? Oh the lovely fog....I asked my doc at what point do we begin interferon or when will it become an option, he said he has other things he can do, but he told me that if he hasn't made himself clear in the past, that I was his front runner and champion and he believes there is very little risk with me moving forward. I definitely did not come to this decision lightly. I lost a lot of sleep and dealt with high anxiety coming to this life changing decision. I don't see a signature of your journey below your comments and I am super curious   And yes once its done there is no choice for me, I keep telling the hubs why couldn't we have an oops so the decision was out of our hands.....

[jjg]

FG, I moved onto interferon at 16 wks when my PCR was between 1 and 10 (can't remember the exact number). Some people are comfortable with waiting until the wbc rise others start on interferon straight way. There is so much variation.

I should get round to fixing up my signature but generally only get short bursts on the computer due to the 10 month old "side effect" from my time on interferon :-)

[Frogiegirl]

Jjg were you pcru before being preggers? If so how long? Yep little ones definitely take up time. ...in a good way;)

[jjg]

I was PCRU for 2 years (-10days) before stopping but then the PCR the day I stopped came back at 0.002 so we know I had been sitting just below detectable that whole time. The PCRs take 3 weeks here so I had already had the embryo transfer before the result came back and then my hematologist sat on the result without telling me until after we got the positive pregnancy test. Given what we know from the stop trials we probably would still have gone ahead if we had seen the 0.002 before I got pregnant.

[Frogiegirl]

Jjg that's stressful were you on gleevec or a second Gen tki? Uhhggg I hope this works!

[jjg]

Tasigna

The just detected didn't stress me much because some people in the stop trials bounce around a bit and actually the test 6 weeks later was PCRU again as hoped. However, the test at 12 weeks was 0.11. This wasn't a major stress because I had confidence that interferon would keep us safe if I could tolerate enough of it (I'd already been on it before). I was super bummed that that I would have to do the interferon.

[SandyG353]

Congratulations Vicky.  Knoppi,, I am wondering why your oncologist said that if you were in the cessation trial and the numbers came back he would put you on sprycel.  Most of the people that didn't succeed in the cessation trial, who were on Gleevec, were put back on Gleevec.  In New Jersey there was a cessation trial that was started 2 years ago which my daughter's oncologist told her about.  However, it was far from where she lives and works, and she didn't want to leave the oncologist.   She has been on Gleevec for 7 and a half years and reached total molecular remission in 6- l9 months after starting Gleevec. Her oncologist  is going to take her blood this month; and if the numbers are the same, he will have her stop the Gleevec , and he will monitor her monthly.  He feels that she is a good candidate and did say that she has a 50% chance of succeeding.  He gave her a test which showed that she would not be resistant to Gleevec if the numbers came back up, but said that should that happen he will double her doseage of Gleevec. She feels confident about this.  She is a single parent with a 9 year old son and does not fear any major problems with stopping the Gleevec.  I will keep all of you informed.  I have mentioned about issues that she had like swollen lymph nodes and a cyst needing aspiration.  Both were aspirated and found to be of no problem so she will go forward with the cessation  of Gleevec.  She is not in a trial.  Her oncologist has been reading all of the information regarding the cessation and is choosing to have her stop and continue as his patient.

[Buzzm1]

if the numbers came back up, but said that should that happen he will double her doseage of Gleevec. 

Get a second opinion ... what is the justification, or precedent, for doubling the dosage? Makes no sense. 

 

For clarification, you are saying that after she stops Gleevec, should her numbers come back up (lose MMR), he will put her on Gleevec 800mg ... is this correct?