Guest guest Posted March 21, 2006 Report Share Posted March 21, 2006 Hello , greetings from downunder Aren't you lucky, 100mg once a day! I take 70mg twice a day. After the first 2 weeks which were rather miserable I seem to have ajusted to the drug and now feel quite ok. I will have another Blood sample taken tuesday next week and am curious about the results. I hope you are doing fine with the BMS without too many side effects. Keep me updated will you Take care Ursula Leigh personal account <susanleigh@...> wrote: Hi everyone, especially Susie and Ursula down under I was just wondering how you were both getting on with BMS. I started 100mg once a day today...... Will let you know how it goes Regards from cold London [ ] Moffitt Hi all, I have been back from Tampa a week after seeing Dr. Bhalla at Moffitt. I liked him very much. He was very knowledgeable and so was his staff. He would like for me to go off 800mg if possible. He thinks that is probably too high for me. But of course first we have to find out all the results from the tests they are running. Fish and PCR. Also I was low on potassium also. They put me on potassium pills. Dr. Bhalla said he attributes that to the Gleevec. I probably will not qualify for a trial right now unless. I have increased on 800mg. I have been waiting for a pcr to come back from Mayo since 2/16. I also have to have another bmb here in Jax, by my onc. Dr. Bhalla will tell him what to look for other translocations etc. This has been a terrible 2 months made worse by the fact I had the flu for 2 weeks. Thank you again and Zavie for the feedluck and support. I was going to call you, but had a friend with me driving and I was recovering from the flu and was generally not good company. I will return to Moffitt in 3 months if all goes well. Oh he also told me BMT was out I am too old. I was a little relieved.If anyone else is going to Moffitt I would love to talk to them. Take care, Joan Porter dxd 7/03 Gleevec 400mg until 1/6 increased to 800 mg. pcr 6.9% Zavie #662 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2006 Report Share Posted March 22, 2006 Thanks for the friendly note, Ursula. I haven't had any side effects yet. I do get more headaches but I also have a new stressful job and new glasses and contact lenses so I blame them. Other than that I haven't had any side effects. What do you have? Of course I'll find out how my counts are doing next week. That's what I don't know yet. Thanks again for the note. L [ ] Moffitt Hi all, I have been back from Tampa a week after seeing Dr. Bhalla at Moffitt. I liked him very much. He was very knowledgeable and so was his staff. He would like for me to go off 800mg if possible. He thinks that is probably too high for me. But of course first we have to find out all the results from the tests they are running. Fish and PCR. Also I was low on potassium also. They put me on potassium pills. Dr. Bhalla said he attributes that to the Gleevec. I probably will not qualify for a trial right now unless. I have increased on 800mg. I have been waiting for a pcr to come back from Mayo since 2/16. I also have to have another bmb here in Jax, by my onc. Dr. Bhalla will tell him what to look for other translocations etc. This has been a terrible 2 months made worse by the fact I had the flu for 2 weeks. Thank you again and Zavie for the feedluck and support. I was going to call you, but had a friend with me driving and I was recovering from the flu and was generally not good company. I will return to Moffitt in 3 months if all goes well. Oh he also told me BMT was out I am too old. I was a little relieved.If anyone else is going to Moffitt I would love to talk to them. Take care, Joan Porter dxd 7/03 Gleevec 400mg until 1/6 increased to 800 mg. pcr 6.9% Zavie #662 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2006 Report Share Posted March 23, 2006 > > > Hi everyone, especially Susie and Ursula down under > > I was just wondering how you were both getting on with BMS. > > I started 100mg once a day today...... > Will let you know how it goes > > Regards from cold London > > > > [ ] Moffitt > > Hi all, > I have been back from Tampa a week after seeing Dr. Bhalla at > Moffitt. I liked him very much. He was very knowledgeable and so was > his staff. He would like for me to go off 800mg if possible. He > thinks that is probably too high for me. But of course first we have > to find out all the results from the tests they are running. Fish and > PCR. Also I was low on potassium also. They put me on potassium > pills. Dr. Bhalla said he attributes that to the Gleevec. I probably > will not qualify for a trial right now unless. I have increased on > 800mg. I have been waiting for a pcr to come back from Mayo since > 2/16. I also have to have another bmb here in Jax, by my onc. Dr. > Bhalla will tell him what to look for other translocations etc. This > has been a terrible 2 months made worse by the fact I had the flu for > 2 weeks. Thank you again and Zavie for the feedluck and support. > I was going to call you, but had a friend with me driving and I > was recovering from the flu and was generally not good company. I > will return to Moffitt in 3 months if all goes well. Oh he also told > me BMT was out I am too old. I was a little relieved.If anyone else > is going to Moffitt I would love to talk to them. > Take care, > Joan Porter > dxd 7/03 > Gleevec 400mg until 1/6 increased to 800 mg. > pcr 6.9% > Zavie #662 > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2006 Report Share Posted March 24, 2006 Hi Ursula Just to update you on my progress on BMS. I had a headache the first day, could be nerves thou'! I seem to be fine since, just taken my 5th dosage. No stomach problems which is great so far......I do feel quite tired and last night felt a little grotty for about half an hour. However the neuropathy is absolutely no better.......I had been off glivec for 10 days and it hadn't yet disappeared and was still there when I started the BMS. So is it related to the glivec or BMS?? I go back to the hospital on April 3rd for counts, I responded well to glivec so I am pretty sure I will respond to the BMS. I will probably ring the hospital later and mention it to them but I will keep on with it and see. Greeting from rainy dull London, spring is late here and there aren't even flowers in the gardens yet. Send me some sunshine. Let me know how you are doing [ ] Moffitt Hi all, I have been back from Tampa a week after seeing Dr. Bhalla at Moffitt. I liked him very much. He was very knowledgeable and so was his staff. He would like for me to go off 800mg if possible. He thinks that is probably too high for me. But of course first we have to find out all the results from the tests they are running. Fish and PCR. Also I was low on potassium also. They put me on potassium pills. Dr. Bhalla said he attributes that to the Gleevec. I probably will not qualify for a trial right now unless. I have increased on 800mg. I have been waiting for a pcr to come back from Mayo since 2/16. I also have to have another bmb here in Jax, by my onc. Dr. Bhalla will tell him what to look for other translocations etc. This has been a terrible 2 months made worse by the fact I had the flu for 2 weeks. Thank you again and Zavie for the feedluck and support. I was going to call you, but had a friend with me driving and I was recovering from the flu and was generally not good company. I will return to Moffitt in 3 months if all goes well. Oh he also told me BMT was out I am too old. I was a little relieved.If anyone else is going to Moffitt I would love to talk to them. Take care, Joan Porter dxd 7/03 Gleevec 400mg until 1/6 increased to 800 mg. pcr 6.9% Zavie #662 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2006 Report Share Posted March 24, 2006 Susie I am glad to hear that you are tolerating this drug better. What a relief, long may it continue. I seem fine so far, bit of a headache on day one and feel a bit tired. No stomach problems so far but the neuropathy is still the same - no better yet.........I had 10 days off glivec and I think it was still in my system when I started BMS. I will keep going and see what happens. Due back at the hospital on April 3rd for counts and ECG etc Let me know how your results are. Regards from miserable dull London [ ] Moffitt > > Hi all, > I have been back from Tampa a week after seeing Dr. Bhalla at > Moffitt. I liked him very much. He was very knowledgeable and so was > his staff. He would like for me to go off 800mg if possible. He > thinks that is probably too high for me. But of course first we have > to find out all the results from the tests they are running. Fish and > PCR. Also I was low on potassium also. They put me on potassium > pills. Dr. Bhalla said he attributes that to the Gleevec. I probably > will not qualify for a trial right now unless. I have increased on > 800mg. I have been waiting for a pcr to come back from Mayo since > 2/16. I also have to have another bmb here in Jax, by my onc. Dr. > Bhalla will tell him what to look for other translocations etc. This > has been a terrible 2 months made worse by the fact I had the flu for > 2 weeks. Thank you again and Zavie for the feedluck and support. > I was going to call you, but had a friend with me driving and I > was recovering from the flu and was generally not good company. I > will return to Moffitt in 3 months if all goes well. Oh he also told > me BMT was out I am too old. I was a little relieved.If anyone else > is going to Moffitt I would love to talk to them. > Take care, > Joan Porter > dxd 7/03 > Gleevec 400mg until 1/6 increased to 800 mg. > pcr 6.9% > Zavie #662 > > > > > > Quote Link to comment Share on other sites More sharing options...
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