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I have had a reply from Sophie regarding the use of EPO at kings. As you would expect it is a full and concise reply where the information came from the clinicians at that hospital.
Basically all hospitals are looking to the use of EPO in treating MDS due in part to costs and to a better understanding of the efficacy and benefit of EPO for the various patient types. Basically if you are already started on darbepoetin then that will probable continue but no new patients will be started on darboetin unless a special funding request has been approved.
King's is using Eprex as their epoetin of choice but they currently have no experience in using Micera in MDS. That is to say that Micera could not be used but it would need to assessed by the treating trust for MDS.
However in my case my local hospital has now decided to put me back on darboetin. The switch to micera did not look as if it was well thought out, but was made quickly and under pressure from the Pharmacy. However in fairness when I bought it to the attention of a senior person in Pharmacy, they promised to review the decision straight away. After further and fuller consideration was applied then the switch back to darboetin was made.
I may well still decide to request a second opinion/overview as I am never given in my opinion a full consultation and never get much time for questions. There does not seem much time in resources at Consultancy level. given over to MDS patients. However as previously stated the haematology day center is excellent and always give me plenty of time, so would not want to leave my local hospital . As stated they are considering going down the road to transfusions and my Neutrophils have been as low as 0.6. Filgrastim has now been increased to 3 times a week. Now may be the time for the second opinion.
I note that Tina Hb has been 7.6 and that transfusions are needed. I do hope that you will have more energy and that it will be a great help. It is good that you both seem to have plenty of time for questions and get full replies at your Consultations.
I have noted Chris that you have come up with a full list of questions at the request of a new member. Can you think of any questions that Tina or myself should or could ask. Including some on treatments that may be outside the usual. Hope all is going well with yourself.
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- Joined: 01 Dec 2009 21:52
- Location: Essex
Interesting that your question to the Senior Pharmacist, Graham, seems to have prompted a change in the decision re the proposed switch in EPO treatment to Mircera. Maybe they did not have evidence of benefit for MDS patients as Sophie's reply suggests or maybe a simple mistake? I expect you are glad to be staying on a drug which has worked for you - even though the effect seems to be diminishing?
I understand that there are soon (not sure when but work in prgress!) to be some updated UK guidelines on MDS and treatment options. My feeling is that this document should be adhered to by all and that hospitals should not be "doing their own thing" but using UK-wide approved treatments from the MDS clinical excellence centres and research evidence. So regarding questions, with any proposed treatment we should always ask about the risks and benefits when a drug is started and ask about the reasons for cessation of a treatment if it is to be stopped. Clearly, if it does not appear to be working the clinicians should have an idea as to why this has happened and maybe have a Plan B, albeit that that may be supportive care with blood transfusions.
When I was first diagnosed, I was prescribed prophylactic daily antibiotics and a daily Chlorhexidine mouthwash as my white cells were low. When I queried this, I was told by my local consultant that "70% of haematologists would prescribe this". When I looked it up on Patient.co.uk I found that this was not recommended so I never took the antibiotics and dispensed with the mouthwash after a month when I realised it was staining my teeth black!!! Although my neuts are around 0.6, I have only had 1 cold and 2 minor - probably viral- chest infections in the 5 years since diagnosed so I take this as evidence that the antibiotics were not required!! Of course, I would take them if I had a neutropenic fever but it doesn't appear to be good practice in view of the growing resistance to antibiotics to take them as a preventive measure.
Am keeping well thanks. Next appointment early next month so we wait and see again!!
I have got the feeling that they my Consultants would go down the supportive care route with Blood Transfusions. However Blood Cell Growth Factors Darbepoetin & Filgrastim ares still effective albeit not quite so effective.
I did have a wry laugh when you stated that you would take Antibiotics if you had a Neutropenic Fever. When I had mine I was given 24 intravenous antibiotic injections plus 10 bags antibiotics on drips. 4 bags saline,2 bags Paracetamol and another bag to raise my blood pressure. This was over a period of 7 days with two transfusions. You do not lack for medication. I do not think that you would have much of a choice with antibiotics, but as you have been so long more or less without incident then you probable will not be prone to any sepsis.
Before diagnosis and before the results of my Bone Marrow tests were known I was held in isolation albeit with antibiotic therapy. My Neutrophils were 0.2. nobody informed me not to leave the room and I thought the notice on the door applied to a former patient, so i came went as I pleased until I was pulled up by the Night duty nurses who had read their notes. Not being ensuite it was hardly ideal, however was eventually moves to a new wing of the hospital with really good facilities. However could not hold me in my new ward forever but released me within four hours with dire warnings as to infections etc. Neutropenic diet with no real ale and warning not to eat the hospital canteen sandwiches. I did stop antibiotic therapy after two weeks but had to cancel our cruise. Six weeks later went down with sepsis. Stopped using the mouthwash when my Neuts were raised by the Filigrastim.
I remember having only a local anaesthetic when undergoing the Bone marrow procedure. I declined the stronger alternative as it was explained to me that I could stop breathing and a nurse would have to be on hand with the antidote to the drug.
Rambling on as usual and hope all goes well with everyone.
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