Tag: velcade

Another Miracle is Required.

On May 7, 2010

In Health Issues, Multiple myeloma, My Family, Uncategorized

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. Hamadaâ€™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 now 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 weâ€™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.

By Susie

On April 28, 2010

In Multiple myeloma, My Family, Uncategorized

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 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 once again. A weeks rest then check-up next Thursday and hopefully continue the Velcade the following Monday. Onwards to success DV.

Supporting www.myeloma.org.uk

To Fight Again-Thoughts by Susie Hemingway

By Susie

On February 26, 2010

In Health Issues, Love poems, Multiple myeloma, Poetry, Uncategorized

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 vainâ€¦

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 daysâ€¦

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.

Today’s visit to Haematology at Lincoln

By Susie

On January 28, 2010

In Health Issues, Multiple myeloma, My Family

For those who understand Multiple Myeloma and are following Hamadaâ€™s clinical details the M-Spike(PP) is now a whopping 18.1 !! the higher this reading goes the more damage will be done to Hamadaâ€™s bones and vital organs which is the nature of this disease.

Hamada is to have another bone marrow aspiration (5th one in all) and a further X-Ray on his back and pelvis next Monday then on the 15th February the consultant will discuss at a meeting with other Haematology Doctors and Prof Russell from the Clinical Haematology Centre at Nottingham, with the view to Hamada starting Velcade which is a newer chemotherapy drug and one Hamada has not tried before and is allowed here on the NHS for first relapse. This is not an easy decision to arrive at and must be weighed carefully against Hamadaâ€™s poor blood counts and his quality of life now but as MM rears itâ€™s ugly head once more, the feeling is we must wage war with further Chemotherapy.