Discussion with UK Onc
Usual clinic appointment today followed by Pamidronate. I showed Dr Barrett's Registrar the recommendations made by the Leonardis Klinik.
They have agreed that the recommendations seem sensible although have reservations about starting the Navelbine so soon if the tumours are not giving me a lot of pain. They didn't think there was a need to rush things even though there was evidence of spread from the PET scan. As an alternative, they discussed the possibility of postponing chemotherapy until after Christmas. If any tumours were giving me any pain then they could treat each individual area with radiotherapy. It was pointed out that there was no evidence to suggest that treating with chemo early helps slow the progression! Also, they don't want to run the risk of running out of chemo options. I declined the radiotherapy at this point.
I said that I did not wish to wait and wanted to start Navelbine as soon as possible (as per Dr Draczynski's recommendation) and therefore I shall have my first infusion on Wednesday 18/10. The UK Onc said that normally this chemo is given as two infusions, 25 mg on day 1 and 25 mg on day 8 and then a 7 day break. However, as recommended by the Leonardis, they have agreed to give me 40 mg every three weeks and will monitor my blood count accordingly.
An MRI scan has been requested and I shall be having an X-Ray next week.
It has also been suggested to me that I discontinue the Pamidronate infusion and change to Bondronat tablets due to the possibility of long term use of Pamidronate causing more problems in the bones - especially in the jaw. I said that I was not happy to do this as I had read on the internet that tablets are not as effective as infusions. They are happy to continue with the infusion whilst I am having chemotherapy but would like to consider a change in the future. I did question whether this was a monetary issue! I need to get some advice from the Leonardis Klinik as I have also been shown a medical article which says that Zometa is more superior than Pamidronate.
So much information is buzzing around my head!!!
Following the meeting I went up to West Ward for my Pamidronate. Unfortunately this wasn't as straight forward as usual. The needle that went in yesterday wasn't allowing any blood withdrawal or any flushes in unless I pushed it down which wasn't going to be any good as the Pamidronate takes an hour. So, that needle had to come out. They tried the next needle and I nearly went through the roof. It hurt! This needle bent. So they tried another needle which was successful and has been left in until next week when I have the chemo. I hope they can order enough of the right needles so that I don't have to go through that again!!!
They have agreed that the recommendations seem sensible although have reservations about starting the Navelbine so soon if the tumours are not giving me a lot of pain. They didn't think there was a need to rush things even though there was evidence of spread from the PET scan. As an alternative, they discussed the possibility of postponing chemotherapy until after Christmas. If any tumours were giving me any pain then they could treat each individual area with radiotherapy. It was pointed out that there was no evidence to suggest that treating with chemo early helps slow the progression! Also, they don't want to run the risk of running out of chemo options. I declined the radiotherapy at this point.
I said that I did not wish to wait and wanted to start Navelbine as soon as possible (as per Dr Draczynski's recommendation) and therefore I shall have my first infusion on Wednesday 18/10. The UK Onc said that normally this chemo is given as two infusions, 25 mg on day 1 and 25 mg on day 8 and then a 7 day break. However, as recommended by the Leonardis, they have agreed to give me 40 mg every three weeks and will monitor my blood count accordingly.
An MRI scan has been requested and I shall be having an X-Ray next week.
It has also been suggested to me that I discontinue the Pamidronate infusion and change to Bondronat tablets due to the possibility of long term use of Pamidronate causing more problems in the bones - especially in the jaw. I said that I was not happy to do this as I had read on the internet that tablets are not as effective as infusions. They are happy to continue with the infusion whilst I am having chemotherapy but would like to consider a change in the future. I did question whether this was a monetary issue! I need to get some advice from the Leonardis Klinik as I have also been shown a medical article which says that Zometa is more superior than Pamidronate.
So much information is buzzing around my head!!!
Following the meeting I went up to West Ward for my Pamidronate. Unfortunately this wasn't as straight forward as usual. The needle that went in yesterday wasn't allowing any blood withdrawal or any flushes in unless I pushed it down which wasn't going to be any good as the Pamidronate takes an hour. So, that needle had to come out. They tried the next needle and I nearly went through the roof. It hurt! This needle bent. So they tried another needle which was successful and has been left in until next week when I have the chemo. I hope they can order enough of the right needles so that I don't have to go through that again!!!
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