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.
07 May, 2010
Labels:
chemotherapy,
multiple myeloma,
neutrophils,
velcade
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13 comments:
OK... Up to the top of the prayer list... Keep us informed about how things are going and what the next steps are....
Any chance for Revlimid? Velcade never worked for Richard but Revlimid gave him about 15 month reduction in MSpike.
Best to both of you.
Teresa
Oh Susie,
what a painful blow !
I will be redoubling my daily prayers for you both.
much love,
Elizabeth
Thank you so much very nice people x
@tk, Yes there was talk yesterday of trying Revlimid another Chemo H has not had yet. So hopefully we will finish-up this last course and see what the Consultant has to say, would certainly take 15 months remission x x
As you are both in my prayers daily, I can only continue with the intention that there is another solution being found right now to improve the situation... hugs from far away...
I, like so many people who follow you and Hamanda, hope desperately that things work out for you both. I can really empathise and sympathise with you both. x x
I think of you and your love often. I will be praying for you. Much love to you dear.
I just finished a round with Cytoxan on top of Velcade and Dex and will find out next week if its working (when we measure the light chains in the blood). I am in the same boat, the Velcade stopped working, I was doing the V-R-D regimen and could not tolerate the Revlimid at all. We have Doxil as the next line of defense if Cytoxan doesn't cut it, then possibly another stem cell transplant. But the cancer grew substantially even through 7 cycles of V-R-D so I'm in a pretty scary.
Keeping you both in my thoughts.
Oh Susie.. I am so behind in checking the blogs,and just let out a big sigh..
I know you have great docs, can you go back to basics, thal and dex?
Perhaps shaking up the routine?
YOu are both in my heart and prayers, and miracles DO happen.. so push forward and keep asking the docs for other alternatives..
wishing you all the best and great strength..
Such wonderful messages left on my Facebook page yesterday:
Joan Abegglen Kahley I am so very sorry to hear that. But never give up hope. Prayer is an amazing thing. Through God all things are possible. I will continue to pray for Hamada and you.
Friday at 14:20 ·
Judy Locke-Eekhof oh my dear friend I am so very sorry to hear that! You both are in my thoughts and prayers!!!! luv ya!!! xo
Friday at 15:29 · .Zena Jean Giessen Thinking of you both always, HUGS XXXXXXX
Friday at 15:46 · .Ben Hobbs So sorry to hear of your setback,all your friends are praying for you both,Hamada will beat this, lots of love xxxx
Friday at 16:07 · .Elaine McGrath We are thinking of you all too.XX
Friday at 17:24 · .Marguerite Adair A sad day, yes. but where there is life, there is hope. Let’s keep hope alive, and I lift you and Hamada up in prayer. And send Light and love to you.
Friday at 17:32 · .Paulette McEneaney I am praying for you xx
Friday at 19:29 · .Lora Abegglen Conrad And we NEVER give up hope because without hope, we have nothing anyway. This calls for additional prayers because you’re both worth the extra effort. Love always!
Friday at 21:48 · .Catherine Waldren Oh Susie – I’ve just read your posting and am so disappointed for you and Hamada – what a blow. Let’s hope and pray for a miracle in the next cycle – as you say, however little, it’s always something. Sending you both much love and prayers xxx
Friday at 22:00 · .Joan Mcguire Sorry to hear that Hamada has not responded well, We are all thinking of you both and we all send our love, hope the next cycle will be the one
Yesterday at 02:44 · .Audrey Blincow Thinking of you here in Dubai, and so sorry to hear the news is not as expected but hope that he improves with a little rest. Love Aud and co x
Yesterday at 09:36 · .Rosemary Liewald Susie I am so sorry to hear this set back you have both been so strong throughout this rigorous period of treatment . Have hope and I know you will continue to be as always strength to each other . Much love from The Liewalds x
Yesterday at 09:40 · .Jo Moursi We have had miracles before, all my love !!!! Xxxxx
Yesterday at 11:19 · .Jo Moursi he’s a fighter alright! Xx
Yesterday at 11:39 via Email reply · .Ken Clark So sorry Susie; my best wishes are with you both. x
Yesterday at 12:32 · .Hollie Tyrone Watts Thinking of you Susie, miracles do happen xx
Yesterday at 23:07 · .Karen Craven Hannon Im thinking of you both and pray that a miracle will happen xxx
6 hours ago · .Jenny Robson Miracles can happen, that’s what we will all pray for. Keep fighting brave man!! xxx
I see that Revlimid is an option and that was what I was going to suggest. It is so disappointing when a treatment doesn't work, but don't lose hope. Hugs.
So sorry to hear this news. I'm sure Revlimid is the obvious next choice but wonder if you have access to any clinical trials where you live. Carfilzomib and vorinostat are drugs Tim's doc is seeing very good results with in patients that sometimes don't respond to other novel drugs.
Sending warm thoughts and prayers for you and Hamada.
Denise
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