"The Journey"
Hamada starts chemotherapy once more, this time with the drug Velcade combined with Dexamethasone.
Velcade is a newer type of chemotherapy - at least here in the UK - an anti-cancer drug called a proteosome inhibitor. In the UK it is allowed on the NHS to people who have already been treated with at least one other type of chemotherapy (Hamada has received several types from 2006 until a Stem Cell Transplant in October 2007)
Velcade is allowed on the NHS for first relapse after a Stem Cell Transplant or in persons unsuitable for SCT.
Starting next Monday, Hamada will receive Velcade by infusion combined with 40 mg oral dex(over two days) this will be continued twice weekly for two weeks then 10 days rest and then repeated. He must reduce within four cycles or it will be withdrawn due to the enormous cost of the drug. Some people sail through the possible side effects some of which are very serious and so Velcade is not to be undertaken lightly especially when like Hamada whose blood is very damaged from previous treatments and his kidneys are compromised, it will be an extremely tough road to travel.
It is most levelling to watch as the disclaimer is signed, listing all possible side effects some of which, are particularly frightening but is there really a choice? Hamada is quite aware that while the Para protein (M-Spike) rises in such an alarming manner now at 18.6! something must be tried before more damage is done to his bones and vital organs.
Multiple Myeloma is not for the faint hearted. It was never a choice but we are ready together to once again fight this battle, we thank the patient doctor yesterday, for painstakingly answering my long list of questions and helping us to arrive at this decision and to those he consulted regarding Hamada particular case.
We also thank our dear family, friends and fellow bloggers for all the wonderful support given as Hamada continues his fight and his journey with MM. breathe...
19 February, 2010
To Fight Once More.
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13 comments:
Oh, gosh. I have a friend whose husband has multiple myeloma, and it is a tough journey. I will say a little prayer for him, and for you too.
He is lucky to have you. But I have a feeling he knows that. :-)
My prayers for you both as you undertake this particular journey.
Kyrie eleison.......
Hope it goes well for you both. Hope you are one of the lucky ones Hamada!
Disclaimer? I don't believe we were asked to sign one of those - interesting!
Thank you Jo - we are most greatful for all the prayers that come our way - there is no doubt the next few months will be difficult but we are very hopeful.
Dear Elizabeth,
Thank you so much for your good prayers - and yes Kyrie Eleison on my dear Hamada, for he needs the Lords mercy now.
Thank you Roobeedoo, Yes I have had some positive comments about Velcade and then the not so positive but as the Prof's advice is to try - not a lot of choice left now - Hamada has decided he wants to see if he can manage with it. I will be watching everything oh so carefully. Did you have the must reduce by four cycles or it is withdrawn bit? (then I believe if it does not work, the drug company pay pack the NHS)
Yes a disclaimer listing fourteen side effects or complications! quite enough to put you right off. Did FL not sign one? Perhaps it's different where you are? Interesting as you rightly say!
Susie & Hamada;
I will be thinking of you both as you take this next step. I am praying that the drugs are tolerable and the myeloma responds.
It's Monday here in the U.S. and no doubt things are already underway in the U.K., but I am sending Reiki energy and positive intentions that this exercise brings the desired results - for the highest and best good of all concerned - so be it and SO IT IS... I will be doing this every morning to align with you two and to support your courageous journey.
Hi Susie,
Indeed things are different in Scotland. I believe England has a NICE ruling about the drug company footing the bill if the drugs don't work, but the NHS paying if they do? Whereas in Scotland the NHS pays. FL definitely didnt sign anything, and we did our own research on possible side effects.
Yes Roobeedoo you are right about the NICE ruling - this is why H must reduce in the first 4 cycles by 50% if this does not happen Velcade is withdrawn and the money paid by the NHS will be returned by the drug company. It seems quite remiss that FL's consultant did not go through all the complications that could occur, even yesterday(1st infusion)we were in oncology a long time while the pharmacist went through the list of H's meds before proceeding.
I would be inclined to ask why there was no mention of side effects and more importantly no Agreement signed and also signed by the Doctor confirming that all the particular concerns regarding the Administration of this Chemotherapy had been explained to both the patient and carer. What if you had not been so knowledgable.
Dave is on Revlimid/Dex/Velcade. He gets weekly infusions of the Dex/Velcade. The infusions have been fairly easy and the side effects minimal, but the Dex started to become problematic so they have lowered it from 20mg to 8mg with the option to lower to 4mg if it doesn't improve. I will pray that it helps make a difference for Hamada with minimal problems!!!!!
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