It was my appointment at the Countess of Chester Hospital today. I was scheduled to have another dose of Velcade, but before going onto the ward, I was told Dr Lee wanted to see me. We discussed the amount of Velcade that I have had and it is unusual for anyone to have over six cycles and I have had seven so far and if I was to continue, eight! So the benefits of having another dose was talked about and actually we don’t know if it is doing any good or just giving me Neuropathy. So the plan of action over the next week is that I have had my bloods taken today and they we see at what level my paraprotein is at. If it has gone down or stayed the same (from 10/12) they will continue with the Velcade. If however it has gone up, it means the Velcade isn’t doing anything, so no point in taking anymore.
I will know the answer next week (Wednesday) and if I need more Velcade I will have it on the Thursday. I have been given some Dexamethasone to take in the meantime but as Dr Lee said, it doesn’t know if it will do anything as I am a unique case and he has no precedent to go by, but might be better than doing nothing.
So the question is what to do if the Velcade isn’t doing anything and my fear of it climbing while we wait for my transplant is true. The option that Dr Lee wants to go for is the Lanolidamide (Revlomid), he wanted to use this in the interim but his colleagues in Liverpool suggested otherwise. I think it was because of the cost, I’m with Dr Lee though and think that the cost shouldn’t be considered when it comes to a life extending decision.
If the paraprotein has gone up then I would expect them to put me on the Lanolidamide and I will be expressing my feelings in a polite way about it going up again and the last 6 months of pain and illness being a waste of time if we are just going to let it go back to the high level again while I wait for my transplant in these last few weeks. I ask myself if the people that make these decisions would come to the same conclusion if it was a member of their family they had to decided upon or themselves. Would they really put a family member who they loved onto a regime they new wasn’t the best and might not work, would they take the risk of the paraprotein increasing and thus increase the possibility of death due to rejection or the myeloma not being destroyed completed because it was too high. All because they need to save money. I would prefer the gamble with someone else's life than mine!
I have heard the arguments about the cost and someone has to make the tough decisions as to where the money is spent. a Cycle of Lanolidamide is enough to pay for a nurse for year etc. Maybe they shouldn’t provide any medical care for Myeloma patients, after all they are going to die anyway, think of the nurses they could pay for… where does the decision making stop becoming about accounting for money and is more about patient care, after all isn’t that what hospitals are for.!
Hospital - a large building where people who are ill/sick or injured are given medical treatment and care
I don’t see the mention of financial cost in the dictionary definition of ‘Hospital’ maybe we should add an addendum that says – providing it is cost effective and beneficial to the accountants/boards who manage the hospital budgets.
.. Rant over
