WOW!! Thanks for the clarification! Here, I thought I was such a wonderful researcher and I was fairly mixed up. I really thought CMML and CML were really both the same thing...that either people just used them interchangeably or the difference was a language thing, as I am from the US. Now, please correct me if I'm wrong-but I think the difference is that CML is the one where the chromosomes 22 and 9 break and translocate, respectfully; while the CMML also has trouble with chromosomes, but can be different ones and don't necessarily translocate, right?
OH-forgive my manners; FIRST; THANK YOU, THANK YOU for setting me straight, and for the support from both of you, Sandy and Darley. I can see that you are both very active here and have helped a lot of people...Bless YOU!!
A couple more questions...as that is the main "action" I can do now, is get informed on the front end-so when (and hopefully IFF) a doctor calls to tell me I have this, I'll be prepared with the right follow up questions, requests for tests, info-etc.
1) does the BCR/FSH test for both CML and CMML?
2) I'm pretty sure it doesn't test for the myeloproliferative diseases...so if this comes back negative my twin sister (AKA: ANNIE) is pretty firm that I HAVE to press my new doctor for a test for those. I was thinking of taking a wait and see approach. The whole reason I have a new doctor is that my last doctor accused me of "looking for new problems" ;( saying I have enough going on without looking for new problems) so I am really self concious about not wanting to act like a hypochondriac to my new doctor. When your body lives with a major birth defect for 52 years, there are a lot of side effects (or co-morbidities, as doc's say) so it seems I am always going in with some new lump or horrible pain I.... I really try to pick my battles. Sorry getting a little side-tracked, just thought it might help for you to know background before helping to guide me as to whether to push for further testing-if this comes back negative. I am developing a new relationship with a doc-so I don't want to start off acting like I need every reassurance under the sun, if not necessary now..at this point-I can wait; but don't want to wait if it would make a big difference in my outcomes.
3) Is there a way to go directly to your stories...I've seen messages of people being inspired by them-but didn't see a direct link...although I didn't check again after logging in-only from the public sight; which brings me to
4) I don't know who the site designer is-or if they are open to ideas for it-but I think it would be helpful for new forum members if there was a button or highlighted area that would remind people if they want to post they have to log in. I completely forgot that is what I had done last night and I spent quite a bit of time trying to figure out how to reply to your posts (there was no reply button because I hadn't logged in) Of course, that is probably well known among people who use the internet/forums a lot; but I am on disability due to my other health issues-and other people like me might be a little flustered with this whole thing...so a nudge about logging in might be helpful
That being said-THIS IS SUCH AN AWESOME SIGHT!!! Yes-I did read the CML facts-and was just a little mixed up (because of my own confusion on the acronyms)-BUT YOU GAVE ME HOPE RIGHT AWAY!! I have been doing lots of research, and these new TKI's are just not being talked about very much-till I came here-and hit the Motherlode-Thank you, so much-this is incredible news! Not only is it there (the new drug class) but there is a whole body of people with experience that I can ask questions to about it. Because of my other issues-I tend to have troubles tolerating drugs. One of the biggest is that I do have chronic kidney disease. So, if they affect kidney's at all, It's probably not an option for me-but I haven't seen anything like that-I will do more research of course! I also have a lot of trouble with belly pain and absorbing drugs-due to the fact I've had over 6 feet of my intestines removed due to bowel obstructions.
If anyone knows of side effects that have been most prevalent among the group-that would be invaluable to me. ...as opposed to "drug facts" that post statistical mumbo -jumbo that may or may not be evident in the real world) this really helps me so that when the time comes-if a doc says take drug "X" and I know quite a few of you have already had "tummy trouble" I will ask for a different drug, instead of wasting time and possibly going into a flair up of horrible intestinal spasms that can sometimes take a week or two to get calmed back down.
THIS is the sort of action I'm talking about-being educated enough to talk to doctors and not have have every thing they say go in one ear and out the other....it just feels so much better going into this armed with voices of experience!
Oh dear-I just realised how long this note is-I'm sorry-I'll try and keep it down in the future-I'm just so happy to have found you! I also forgot to check the text to see if you asked me questions that I needed to reply to-so I'll do that and reply on a new string if so. Anyway, thank you so much. AS i said, I would love to hear your stories, I'm sure they are full of hope and comfort, as is the rest of this site.
best wishes, glo-
