Its’ strange how you know as soon as the consultant says “please have a seat” Some how you sense this is not going to go the way you so wish it would. Even chatting to the very pretty receptionist whom we have come to know over these years did nothing to allay my fears. Although Hamada had his bloods taken very quickly on arriving at Haematology yesterday and the waiting for the results was really very short indeed. I found it so difficult to sit patiently and concentrate on anything. Hamada always sits so calmly and yesterday buried his head in an interesting ‘Flight’ magazine. I nearly always listen to something calming on my ipod or read, but yesterday found myself reading the same line over and over again, being an avid reader this is not something that normally happens to me I ‘drink’ words as fast as I can. For me these consultations get more difficult as the months go by. Well a couple of results had not change too much – we are grateful for anything good! – the Haemoglobin was a little lower at 10.1 the Bence Jones was pretty level on last time results at 0.04 and the platelets had even risen a bit to 51. Then doom hits you like a weight sitting on your chest, the not so good… White Cell count now at the lower 1.5 and the Neutrophils at a very poor 0.72! and the dreaded Para.Protein*(M.Spike) is now at an alarming 10.7 !!
We discussed again with the Doctor what plan of action would be next and how far we should allow the Para Protein to rise, before the next battle begins. This depending now on a second Para Protein test done again yesterday,checking and double checking.
The Doctor stills feels Hamada should hold out longer, as he seems well enough in every other respect, some pain in left shoulder, back when moving and Oh! so VERY weary. So the figure of P.P. (M Spike) at 20, was thought to be the bench-mark for Hamada to start with Velcade. This figure of 20 seems high to me? I do understand the need to balance between the very poor blood counts and the rising P.P.
The Doctor also mentioned Revlimid again and this would be their second choice of action. Both extremely harsh drugs that must be considered very carefully.
I am aware of the recent news reports in America about our National Health Service here in the UK. I would like to assure any of our American friends, that what is reported in your press and on television, is nothing like the care and attention we receive here. Our consultant and his team, are well read and very aware of all the innovative work that is being done at such places as Little Rock,Arkansas. They seem very well versed on all the latest medicines and nothing is being held back from Hamada due to cost. Hamada drug regime is approx forty maintenance drugs per day and one 60 micro gram injection of Aranspt Darbepoetin alta, per week. He has been spared nothing and for that, I am eternally grateful. I would welcome any comments on this, email or here, on the decision to wait until the 20 PP mark. Thank you good friends, who bother to leave comments here and for caring to following Hamada’s Journey.
*Myeloma cells characteristically produce and release into either the blood or urine monoclonal proteins. Monoclonal proteins are referred to as either, M-protein, para protein or M spike. They are terms that mean the same thing.
The monoclonal protein is an immunoglobulin and in myeloma cells one or more mutations have occurred in the genes responsible for immunoglobulin production. Typically, the antibody function of the immunoglobulin is lost and since it is not performing it’s antibody function normally, more and more are produced therefore causing an increase in protein levels.
I had been anxiously awaiting further info about H's visit. And I wish I could contribute something more than my ongoing care and concern for you both and my prayers. Hematology, nephrology, and oncology beyond the basics, are beyond my fund of information/skill sets. I am grateful Hamada has wonderful specialists with cutting edge information/abilities and all the available medications to help guide you both through all the best steps. Thank you, Susie, for your post and the most recent results. I, too, know that feeling when you *know* by the minuscule changes in tone of voice, in that "have a seat" and slight differences you perceive in the other staff around you. Keep up your courage and know that you both are wrapped in the love and prayers of many…including mine 🙂
Sigh….well, it's certainly not what we had hoped you would hear. Some of the numbers look okay though, so, that's good. I'm not an authority, so, I am not qualified to judge/comment on the m-spike other than I know that is high, but, there are other factors that need to be weighed with that to know if you need to be too concerned. I've heard of higher m-spikes, but, I don't know what the 20 would mean? As for the Revlimid – that was my first (and only) line of treatment. It is very powerful and tough for a lot of us to tolerate. It wouldn't hurt to ask your oncologist if Hamada could start at a lower dose (10mg or 15mg)and see how that works to reduce the m-spike rather than start at the higher 25mg which "wipes out" most of us with extreme fatigue – he doesn't need that in addition to his weakness from the blood counts. Just a thought.
Lastly, as far as the health care you feel Hamada is receiving, it's good to have faith and confidence in your team. As long as you have that, it's more important than the news reports. Keeping you both in my prayers. Will be waiting with great anticipation for the next plan of action. From your friend across the pond – Lora
It is good to know everything that can be done is being done, or considered. I never doubted Hamada was getting the very best care the world has to offer, both at the doctors, and especially at home.
As worrisome as this is, I'm with everyone else – you know Hamada is receiving the best care possible.
You and Hamada continue to be in my thoughts and prayers, Susie. And I'm with Karen – I wish there was more that I could offer than that…
You are both in my prayers and daily intentions for better days and I do so want the team to find the right combination for Hamada's improvement. I will keep on knowing the doctors are being divinely guided to achieve that goal!
Dear Susie, I too have a waiting room situation to face today so I know exactly how you feel. I wish I understood the numbers better – but our doctors keep saying the numbers are not "the point", and that its his overall condition that matters. I wouldn't wish a major chemo episode on Hamada too soon – the more I read, the more I understand that this is viewed as the last resort by many doctors – our own included. Oh Susie, what can I say – good wishes to both of you, and just love each other as I know you do!
Susie You are fighting so hard. Hamada wouldn't be alive today if it wasn't for you. Yet you find tranquility in your home and the small joys that come.
Long may your happiness last.
Ruth
Adding my heartfelt support and good wishes for you both.
It is frightening the distortion of the reality about health care both in the UK and here in Canada that the American public is receiving. It is doubly frightening the news media permits special interest groups to paint such a false picture unchallenged.
I am joining your story and Hamada's in mid stream, and I am sorry to hear his latest test results. He sounds like a marvelous man–with an amazing wife.