Hi Livia, The pregnancy issue is always quite difficult. Make sure your Doctor knows what our ultimate goals are. You could probably stay on low dose IFN throughout your pregnancy, I am aware of other women who have done this. At least it does help to keep the CML in remission. Did you know that when you are pregnant your body produces IFN? It isn't enough to stop CML from progressing, but it helps the body not to reject the baby which is "foreign".
I know what you are saying about the weight and it isn't a vanity issue at all. I think it is very important for us all to be more concerned about the weight issue. Additional weight puts additional strain on our system and we need to be careful about that. Additionally, if the extra weight is due to water that's not too healthy either. So, I think loosing weight is a good goal and I think this combination may help. I know I lost weight when I went on IFN. Like you Livia, I think the combo trial is very important especially for younger patients who face a very long time on one drug therapy or another. It is nice to think that you might be able to have some time without drugs and still remain in remission. Please keep me posted. Cheers, Cheryl-Anne On Apr 9, 1:54 pm, livia klescova <[EMAIL PROTECTED]> wrote: > Hi Cheryl-Anne, > > Yes, your email definitely helps me to understand things better. As you > know that trial I am on, if successful, I should be off the medication at > all. But my concern is to have a baby, so I am thinking, is it better for me > to still remain on IFN? I wouldn't mind to stay on IFN just to be sure that > something is maintaining my CML, even if undetectable... we all know that it > still may be there... Let's say just to stay on some kind of low maintenance > dosage to maintain PCRU? > > I would also love to lose some weight and I just pray every day that this > trial will work for me and I can taste for a short or long term my weight > back!!! Guys, I gained like 35 - 40 pounds. I went from a size 6 to size 12 > - very depressing I tell you J I am only 29 and my whole female part of the > family, including my 80 years old grandma, are sizes 2 - 8 max. I know that > most of us are familiar with this problem and we shouldn't worry, but I can't > help myself. It bothers me. > > I also hope that most of the people will do well on this combo and more CML > people can it in the future. I think that it is great, of course maybe some > people can't tolerate IFN, but for those who can, I think that it can be > amazing approach to treatment, because then we can do Gleevec, Gleevec and > IFN, IFN only, nothing - just waiting if CML comes back, and then if all > these options do not work, we can look at other treatment options ... isn't > it buying us some time? (hate to use this expression). > > Anyway, I can feel a little bit more water retention since I am on IFN and > Gleevec and I am tired!! I already adjusted to "hurting myself feeling" J > haha, because it was really hard to inject myself. Now, I am becoming a > professional, there are no bruises anymore and the redness from the injection > is also disappearing as I control it with Benadryl cream and I do not scratch > myself like a dog J > > I am going to see my doc this Friday, so I will update you and the group > what's going on. > > Livia > > "[EMAIL PROTECTED]" <[EMAIL PROTECTED]> wrote: > > Hi Livia, > > As Trey mentioned, they are essentially the same thing. Although I > can tell you from personal experience with both IFN and IFN pegylated > my side effects, that were very low with regular IFN, were even less > with Pegylated IFN. I am not sure why that should be the case, there > are theories, but then again those are just theories. > > However, the trial you are on is much different from the trial I > posted about back in December. The trial I posted about from ASH was > looking at using Pegylated IFN as a maintenance after stopping > Gleevec. Interestingly, data continues to point to the usefulness of > this strategy. Patients in Europe on this trial start therapy with > both Gleevec and IFN. Once they achieve PCR U (undetectable) after a > while they are "weaned" off of Gleevec. They continue on the > pegylated IFN but in a very low controlled dose. Pegylated IFN is > only injected sub cutaneously (under the skin) once a week or once > every 10 days. Side effects usually start almost immediately after > and last a day or two, then taper off. The nice part of this is that > it gives you freedome from remembering taking pills everyday. Plus, I > lost close to 15 lbs on this "diet" of IFN ;-) Meaning I didn't retain > as much water as I do with TKI's. > Anyway, the results from this trial show that you can maintain > longterm responses to Gleevec and IFN with just low dose IFN. The > important hypothetical next step would be can those patients be weaned > off of IFN and achieve long term sustainable drug free remissions? > Perhaps we shall see something like this in the future? We do know > that pre Gleevec anywhere from 5 - 20% of patients on IFN therapy did > achieve this type of remission. So, it isn't too hard to imagine. > However, no one really knows exactly how IFN works, so it is hard to > knwo for sure if the combo approach of Gleevec and IFN as was the case > in this trial would help us achieve this potential. > > Hope this helps, > > Keep me posted on how you are doing ;-) > > Cheers, > Cheryl-Anne > > On Apr 9, 9:26 am, livia klescova > wrote: > --~--~---------~--~----~------------~-------~--~----~ [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. 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