Having been very remiss of late with no postings, time for a little update I feel.
As you will all understand life has been very busy indeed! Firstly at a most crucial moment,the publishing of my second book "A Power Within" my brand new laptop decided it was not happy to be working so hard for me, and refused to turn-on one morning. That really upset the apple cart! I was lucky to have saved the most vital information and all was not lost but a good reminder once again to back-up more often.
My book has really taken off, it seems there are many lovers of romantic poems and how generous people are in supporting this good cause. Not easy at this time of year and in the present climate but I know that many of the books sold are going for Christmas gifts, also many ladies are treating themselves to a little romance. It is so pleasing to know that there are many of you looking forward to curling up during the holiday season with your Christmas chocolates and treats and reading the love contained between these pages. Thank you for the lovely comments sent via my emails and here, telling me of your favourite poem and how much you are enjoying these poems of love in your daily read.
And So I thank you very much indeed, for this has now generated going into a second print, superb after less than a month!.
The wonderful Man whom all this writing is for, continues quite well, with a little improvement. WCC now at 2.1 Plat now at 54, and Creat 382 but the Paraprotein (M-Spike) is now 16.9! which we expected or thereabouts. No decision has been made to start Velcade, one of the only drugs Hamada has not tried. We had thought that perhaps this consultation would bring this. The feeling is still, that while Hamada is managing his quiet life with controlled pain and no other further symptoms, it would be wise to watch and wait a while longer. These past months have been so much better for him in many ways, a respite from the harsh Chemo drugs that pull him down badly. Although very weak he does manage to enjoy his days in a quiet way, is always happy, with seldom a down moment and just as amazing as ever. Now we even think of a New Year! who would have thought this possible at the beginning of this blog?
Never give up hope MM sufferers, even when given a poor prognosis and told the outlook is grim. So many are now proving the statistics wrong,giving them no credence. Many stories come to my ears of lives continuing well with many good and productive years. Keep strong and believe that with the wonderful new drugs that are now available thanks to good continuing research, that all will be well. My sincere wishes to you all and thank you so much for supporting MM.
A Power Within - fifty poems of love, is available via http://www.susiehemingway.com/books/
07 December, 2009
Time For An Update I Feel.
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7 comments:
Good to hear Hamada is "keeping steady" as we say up here! No point in rushing into another drug regime if he is basically "well". Good luck to both of you!
Thank you Roobeedoo, I must say I feel this way too, certainly to see a slightly better quality of life for H is so nice. I was very happy to read about the Velcade for FL and for the good results - gives us hope.
Hello Susie and Hamada,
Velcade is a very effective treatment, and I hope your hematologist starts it before Hamada has any further injury.
One of the side effects, though, can be painful neuropathy. Doctors have recently discovered that the neuropathy can be avoided for many people by using a once-per-week regimen rather than the usual twice-per-week. This may require more cycles of the medicine, but well worth it.
Perhaps you can suggest this to the hematologist. If you need references, there were several papers at the recent ASH Conference and I can help find them.
Best -- Don
Thank you Don for your very valuable advice. I am concerned with the very high M-Spike but Hamada has in the last few months been able to a little break from all the trouble and sickness, although very weak. I keep thinking his consultant will say now is the time to start with Velcade but I also know it is a very harsh drug, efficient but with a danger of neuropathy. I am most interested in the once-per-week regime, that too may be easier on his kidneys? I will mention all this in January dv. Many thanks for your concern and good knowledge, which is very much appreciated. Our best wishes to you and yours.
Susie,
Do you have a Carfilzomib trial
available to Hamada? It is the same exact type of drug as Velcade
but has a better side effect "profile" including less or no neuropathy. It is working very well for MM'ers, some say even better than Velcade. It is past the early trials now, I think, so they know quite a bit about how it
is working.
Happy Holidays!
Thank you 'Tim's Wife, Have been reading a lot about Carfilzomib but not available/offered to us as yet. We are to have further discussions in January. It really does seem that a decision must be made but I can understand clearly what the Doctors are saying and their worries just at the moment,re: kidneys! and the very poor quality of blood etc, Still we are very concerned of course.
Seasons Greetings to you and your family.
Many thanks for your update and glad to read that your husband is doing fine. As you said towards the end of your beautiful post, never give up hope.
Greetings from London.
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