It was a sad day for us both yesterday which brought bad news that Hamada is just not responding well enough to the chemotherapy drug Velcade. With just eleven infusions received since starting in late February and many stops and starts along the way due to a chest infection, severe reduction in neutrophils and platelets, it has been hard work for him from day one. Now again the next and what looks like the last cycle of four Velcade infusions- unless a miracle happens- will be supported with Filgrastim 30MIU/05 injections started yesterday and continuing throughout the next four infusions. Hamada’s Doctor at Lincoln informed us that a very poor reduction of 4.5 in para-protein level after eleven infusions is really not good enough and is most unlikely to make the 50% reduction needed to continue. Yesterday neutrophils were an alarming 0.68 and PP still at 14 !

So dear family and friends unless another miracle happens and we’ve had a few, Velcade will not be the wonderful elixir we so hoped would work for dear Hamada.

Never Forgetting How Far We've Come !

Never forgetting how far we've come I've posted the above photo today showing Hamada when he first come home from Nottingham City Hospital after his Stem Cell Transplant. This was in late 2007 and there have been a good few battles along the way since then. With his courage, good medicine and management of this difficult disease,Hamada has beaten many odds and now once again is fighting his way forward, this time just having received his 10th infusion of Velcade. A few stops and starts along the way with lowering of Platelets and Neutrophils, a nasty chest infection, some needed G-CSF injections and the wonderful skills of the phlebotomist at Lincoln County Haematology department, who's gentle care on extremely over used veins (twice weekly, showing how delicate this whole regime is)just constantly amazes me. Particular thanks goes to Jill who kindly uses paediatric phials for Hamada, these little things help ease the way, and with such gentle care, praise indeed.
We do not have the current Para protein M-Spike reading but are forever hopeful it has fallen again from the last 14.4 marker.
Bloods are holding: HB at 9.3 Neutrophils at 1.66 WC 3.1 and platelets at a great(for H)47! Kidney function is now 18%.
The journeys are tiring at least twice a week and sometimes four if other clinics need attending and on Chemo days, the wait is long between blood taken and the results but it is a tiny weeny price to pay for any lowering of the myeloma burden and we feel joyful on the return from Oncology when success is had.
Although it is early days with the Velcade, Hamada is having no other side effects and seems brighter and with what I call his Dex face - looks better than he has for some time.
So never forgetting how far we've come, we forge forward with hope that Hamada will reach his 50% reduction target after the next six infusions and so be able to continue according to the NICE UK Ruling.

Addendum:
Hamada completed his 11th Velcade on Thursday but platelets dropped from 47 to 28 in two days, I spoke too soon! He received platelets again on Friday and feels much better again. A weeks rest then check-up next Thursday and hopefully continue the Velcade the following Monday. Onwards to success DV.

Hamada Continues With Velcade

Hamada started his second course of Velcade this week, his platelets have risen back to 33 and although having a bad cold, the Doctor after a good examination, deemed him well enough to continue. Coupled with the twice weekly Velcade, Hamada is taking 20mg Dexamethasone x 4 times weekly and a course of 21 days of Aciclovir. Each week before receiving the Velcade push a full CBC is taken, so we hope that his blood and most of all his platelets remain stable. He is experiencing some 'sweats' which mean a lot of bed linen and PJ changes. These sweats of course are difficult to distinguish between the cold and the effects of the Velcade, but with continuing normal temperatures which I take everyday, I am not overly concerned.

Hamada feels upbeat and cheerful and as the sun is now streaming in our windows and Spring seems well on it's way I leave you these little pictures showing the sheep in our lane having escaped from their field for a little walkabout.


PS: Hamada received radiated platelets yesterday which came all the way from Sheffield ready for him at 10.30 - excellent treatment from the Alex Medical Day Unit at Lincoln - great team there.

To Fight Again - Thoughts by Susie Hemingway

Late winter months as news imparts
the gravity of this new start
dear God as we begin this fight
in restless days and feverish nights,
as poison flows through damaged veins
please not let this be in vain…
Smaller smiles through struggling days
of waiting for the nausea waves,
understanding strange regimes
jab jab as harsh it always seems,
as draw for tests to go ahead
when all he wants is his fresh clean bed.


Perpetual hours that make me sigh
impatience that since child has always been
and now this purgatory of hopeful scene,
as tedious the walks I make
through lengthy corridors and doors of pain,
please Lord! let there be a gain.
How good the compassionate nurses who
bring solace to my broken warrior,
a smile or a tender word all make a difference,
I notice a gentle hand on his shoulder,
in their relentless comforting care.
I also notice many sitting there,
with their dreams of better days…


My mind whirls as the precious cylindrical vial arrives with pomp and ceremony,
to scientists far away who have tried to bring
with knowledge gained, further days.
It is received with hope and joy
but will it work to overcome?
for this Man who waits expectantly with those oh! so trusting eyes.


A Poem about Chemotherapy February 2010– all rights reserved

To Fight Once More.

"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...