It was not a good consultation for Hamada this Monday at Lincoln. A very disappointing CBC again, alongside the news that the Doctor does not feel Velcade is in Hamada's best interest. We were so hoping for the benefits of this drug. The Doctor is of the opinion, that Velcade is way too powerful for Hamada's already weaken state, believing it will do more harm than good? I will of course, see what a second opinion thinks, but at this time the doctor feels it is not an option. There is thought that Thalidomide may be used once again, to try to reduced the very high, now at 6.3 para protein (M spike) or as a 'last ditch attempt'! It seems he would prefer to 'manage' the Myeloma in an effort not to do further damage with even more strong chemotherapy. Hamada has accepted this, but it does not 'sit well' with me at all. Although I clearly understand what the Doctor is trying to say - and knowing this time would surely come along - I am by nature, a 'fighter' and find this the most difficult time of all. It is written across Hamada's notes that this terrible disease is now too hard to treat!
It has not been easy to write this post, as I am sure you are all well aware.
For those who understand these readings: PLT.now at 39(normal 143-332) HGB10.7 WBC1.05 NEU 0.58 and Paraprotein 6.3
So my friends "make everyday a masterpiece"...
All comments welcomed.
11 February, 2009
A Disappointing Consultation.
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11 comments:
Sending warm and healing thoughts your way as you ponder the next step.
We are spiritual beings trapped in these delicate bodies, and you and Hamada are living proof. Best wishes from over here.
Yes, I have heard it often said that we are spiritual beings having a "human experience". I'm saddened by your news and it is a tough transition to make emotionally. It was very hard for me to accept my mother's decision to stop any treatment of her cancer as the treatment was worse than the disease and would buy her little time and none of quality. While intellectually I certainly understood, it was hard for me to accept. I'll be thinking of you a lot these next days and weeks ahead and continued hope.
Would Revlimid be an option for him or even melphalan and prednisone which is an old treatment that works for many? Best wishes to you both.
Teresa
6.3 isn't that high, surely?
I say this, because my FL's m-spike is at 3 and rising, and they tell us it is still "low"...
It all comes down to quality of life, and surely it is better to be as well as possible for as long as possible...and if the drugs knock you flat then maybe it is better not to risk it. But I know. I know. So very very difficult. Get a second opinion and love each other lots!
Thanks to you all, for your comments and very valuable input.
In answer to 'TK' - thank you, I know you have enough worries of your own right now x - I will ask again about Revlimid and to Roobeedoo - our best to FL - yes, 6.5 IS high and it seems to be going the wrong way much too quickly now! only 1.09 in August last. Hamada's team are most worried by the poor quality of his blood. Transfusions will harm his kidneys further and the strong drugs they say, will do more harm than good. Yes, first the quality of life of course. We do the very best with each and everyday and Hamada is content and comfortable and able to do quite a lot still but I so want to be doing more. My thanks to you all for your continuing help and support.
Dear Susie, thank you for your kind words. Life, in a way, lost meaning for me, and as you read that blog of mine is over.
I started writting to Lea, though, in another place... maybe she can read me, hear me, I don't know. Anyway, tell the world what I felt, and still feel, gives me one reason to go on, and so if you want to visit us there it would be very nice.
www.loving-lea.blogspot.com
She was the most beautiful person on earth, and I love her so... I'm going there on the 4th of March. Thank you, once again, and be brave too.
Celso, I was so very sorry to hear about Lea, I do hope you got my message. Keep strong.. you are in my thoughts and prayers...
Susie, thank you for your kind words.
We are thinking of you and Hamada... peace and blessings to your family from ours.
Susie, I am sorry to hear this news. I don't think we are ever prepared for these experiences no
matter how long we've been dealing with MM. Sending prayers across the pond to you and Hamada.
Denise
Thinking of you and Hamada. I hope that you and the the doctor come up with a good solution.
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