Your right there can only be Judy2. I hadn't seen her on the board for awhile and she was a frequent one. I knew she was tired had started Sprycel not to long ago. I was wondering if she was OK. She is a sweetie. I hope the side effects and being tired soon take it's course and she adjust nicely. I know she had a couple of problems to deal with, so I was just kind of concerned that she is Ok. She was always cheering me up even if she didn't agree, she is like that, you know!!
I had several phone calls back and forth from Indiana University Simon Cancer Center yesterday from the onc nurse. It seems we had a few misunderstandings. I thought the new onc and I were on board, same protocol, when I went for consultation last Nov. I thought I was going to be have 3 fish/pcr and genetic labs and after an established baseline was made, with their labs. The good doc and I would sit down and talk about the results and the TKI and the future protocal. The onc had said that some doc go strictly by the guidelines but he did not. That if I were in a certain range and holding steady, he had drawn a chart on the board, he did not have a problem with me staying on Gleevec. In fact he said he had some patients who had chosen to go off TKI and usually go back on them within the year. So this wasn't new to him. Although he said most patients are the opposite they just want the lated drug or trial and most don't do a lot of research about their disease like me. There are two oncologist and they only see patients on Mon & Thursday's. The rest of the week the 2 docs are doing research. The older onc is stepping back (he is 54 years old and been working with leukemia patients for over 30 years) but he is letting the younger onc take over the research.
Well I had my first PCR/FISH and labs Mar 19th and the FISH was 1.5 and the PCR 7% and there were no other mutations or problems, only had the P210 bcr/abl 9/22. However he said to come back in 1 month, so I thought he wanted to do more labs, and then wait 3 months after that, and do another one, to establish the baseline. I don't know I was confused. Anyhow I made the appointment for 2 month later (instead of 1) after the Mar 19th. I called the onc nurse and told her I wanted to come in 2 weeks, before my appointment with the doctor, and do the labs. I don't like how you see the onc, then have labs done, and then they call you back, to talk to your about the labs. Actually I had a gut feeling from the nurse he wasn't real thrilled about me being on Gleevec, but i figured I was still in that range we had talked about. PamM, actually I think I got that ideal from you, to have the labs done before you see the onc. We are now playing phone tag. This is last Thursday, I called back and said we have already discussed counts and protocol and I was only came in for additional labs to establish baseline. Well she didn't call me back until yesterday and she leaves a message (phone tag) he wants to do a BMB. I am freaking out now, because we had discussed the BMB last Nov (I said NO More BMB). After hearing on my VM I having a BMBSo I am now very upset, because I made it clear to new onc at consultation; I have had two BMB done and I would not have another one, because of the sever pain for weeks. I had to use a walker and ice down and take pain pills, and go to physical therapy, and I was now 6 years older at 64, and I'm not going thru that again.
The bottom line, I said please call me, if the doc is aboard with me, I want to reschedule the labs for 3 month intervals, and make the labs 2 weeks before the 3 month appointment. I said if he (onc) WAS NOT on board with that, that was OK too, but I needed to know, as I would need to make other arrangements. Anyhow she straight away, called me back, and we actually talked person to person, and she said she understood about not wanting to do the BMB, and the onc agreed reluctantly, to do the 3 months of labs, 2 months apart, two weeks before my appointments and I could stay on Gleevec. For some reason she tried to discourage me from doing the labs 2 weeks prior to appointment, she said why make have to come back, I said because I want the labs in front of me when I see the doc. I don't want a call later to come back to discuss counts.
This whole thing blew my mind. We had covered most of these issues back in Nov. In fact the consultation fee was over $400.00 of which I have to pay $277.00. And the nurse said she couldn't find the my previous 2 years of labs, I gave them (they were copies) from the old lab, done in NJ. So I don't know what went wrong there. But IF the conversation had went badly, I was prepared to move on to another oncologist. Maybe fly to MDAnderson every 3 months for the next years, as I have been there twice was in 2005 and once in 2006.
The nurse did send me a warning from the onc, since I was not Undetectable I could mutate. I felt sorry for her she, to be in the middle between relaying message from me and the onc. Shed had just completed her clinical and I imagine they don't get many patients like me. I did tell her I was sorry, in that I did NOT mean to be difficult, but I was not new to this, and at this stage of the game, I knew what I felt I needed to know and even though he was the doctor, I had to live with this everyday, and this was the way I wanted it to go down.
I had told her, you know what, I could be undetectable or fly under radar and still mutate. The TKI's are not cures, they only kill at the bottom level not the original defective stem cell causing the mess and even if they did my body would probably only create more of them. The disease is chronic and they are mature CML cells that do function, so if we keep a check every 3 month I am more then a happy camper, then to go experimenting with other drugs or God knows what, and I am getting old. No matter what the choice there are no guarantees, and what sort of quality of life down the road am I going to have. I think if I were young I would perhaps have a very different outlook, they are targeted drugs but the body gets worn down with the chemicals and age, then again every one is different. I told her I remember my mom those last few years and you can only give the elderly small child doses of med's. I know how it works they hit you hard then if you have trouble they give you more pills for this and that or shots and transfusion or whatever. So now we have killed a few more cancer cells but what was the price. It took me two years to adjust to Gleevec, I even had my gall bladder out that looked perfectly normal but it quit working, my kidney number went down, but not in danger, my face and eyes swelled like a good year blimp, I lost my balance my vision, etc. Everyone ignored all of this and said your doing fine, well now here I am 6 1/2 year later I have adjusted and I'll be d if I am going thru 1 day of that again, if I don't have to.
Sorry got carried away. Easy to ramble on and on, thinking out loud. I guess most have their own theories of their own situation that is if they have been around a few years and know how their bodies are reacting and whether or not they want to change, you know all that stuff you have a little more hind site. I envy the ones that can take a small dose. That didn't happen for me and I was hit hard and brought down low. Was hard to make a come back, a long haul..........
Sorry I Hijacked someones thread.
Got to go hubby home today. Going out for a nice meal. Then cleaning out the office, oh dear boxes and boxes of files then painting mostly him painting, got a bad left hand. Then we have two 8 x 10 throws we got on sale for 30 % off. We built this house in 2008 and put all hard wood floors in except the living room, so I just put a few large throws down, then when they get to dirty I just roll them up and toss them. We got a great deal, my husband works part time at the store and got special discounts.
Better go or won't get anything done.
Pam glad you made it thru the induction of Sprycel and took the fall and now on your way to a better life. That can be a hard hit to begin with. But then you are a busy lady with her critters and all to keep you distracted.