This topic contains 8 replies, has 7 voices, and was last updated by DaiCro 13 years, 5 months ago.
I woke up twice during the night of 19/20th with a completely dead left arm… I have had this feeling before (to a lesser extent) when I have slept heavily on a limb but this time the arm was hanging down at my side. Janet managed to get it back to almost normal on both occasion but my hand remained numb and 'heavy'. I woke in the morning and went for my consultation, complete with heavy hand. The worst news for me was that it was impossible for me to pick up and play guitar.:'-( 🙁
I had my bloods taken and was seen by my original consultant. She is fine but I had hoped for my now regular consultant… we seem to have established a good relationship.
Any, it didn't matter. Before she had had the chance to switch on the computer Janet jumped the gun (first time ever) and asked the question: 'Is the Velcade working?' To which the consultant said 'Oh Yes!'
We had to wait while she examined the top sheets on my file and the results on the computer. We had been reminded in the Day Case Unit that we had to achieve 50% of my starting point by the half way mark of the end of Cycle 4 – I had had 2 Cycles to this point and this was my first interim results so we were anxious to see how we were getting on and by exactly how much we had reduced (if any) the light chain plasma cells reading… our starting point was 250 and we were due to go start my 3rd Cycle straight after this consultation.
My consultant looked up and said, 'I see that you are quite anaemic (HGB 8.3) and I understand you are having some Peripheral Nueropathy problems but we can try and help that by reducing your Velcade dose from 2.77 to 2.1, we can afford to do that.. we can even drop it some more if it persists… but your treatment is working very well… (Janet and I are fit to explode by now)… you started at 250… no, 264 at the start of V1/1… and your reading today is… 13. (Big Smile).
Janet,,, '30?' Me (the deaf one) 'one three?'
Consultant: Yes 13, one three.
So… I have nearly made it. CR (Complete Response) 0… which I had hoped to achieve by Cycle 6 almost in touch after 2 cycles. In the words of the Day Case Lead Sister when she asked 'Absolutely fantastic, no truly, an absolutely fantastic result… Wow!'
We were sent away for 2 hours or so while they made up my Velcade and we celebrated by ordering our new car and shopped at a new ASDA. We returned for another 1.5 hours wait but we didn't care. The Day Case nurses said that there is a very good chance that the PN in my hands (less so in my right) will return to normal in the days after treatment and the inability to play guitar is the only blot on the landscape after this wonderful news.
The consultants want to see me on the Monday following the end of Cycle 3 to see where we go from here. I was told that when I achieve CR that they will give me 2 more Cycles to make sure. Because I started Cycle 3 on only 13… and taking into consideration my PN problem… there is a chance that they might consider this cycle as one of the extra 2… with Cycle 4 as the final Cycle of my 'Velcade Treatment' and then… remission. I do hope so.
After such a miserable start to yesterday, today life seems very sweet… even if due to the 8.3HGB I am having to celebrate from my bed. 😎 🙂
Dai.
Brilliant news Dai you and Janet must be on cloud 9!!! Heres to the next results being a big fat zero!!! love Bridgetx
Holy Smoke!! Dai this is WONDERFUL news!! I'm so happy for you I could burst – yay!!
Wonderful, fantastic, super-dee-duper …. thanks so much for sharing, this is such a positive, cheery note and just what the doctor ordered for us all.
Well done to you and many congratulations too 😀
Big squeezy hug to you and Janet, I'm so very happy for you both
Sending love and healing thoughts too
Angelina xx
Well Done that Dai and Janet "the gun jumper" as for playing the guitar later trust me Dai I aint got PN and I still cant play a note he he.
Keep it up and Good Luck and well done to you all
Tom
Wonderful news HURRAH what a day, you must be so relieved even with a bit PN as for the 8.3 I have not been above 10 since I was diagnosed I have sort of got used to it although 10 o'clock at night is my witching hour had it by then, went to the renal clinic today kidneys still stable so that was one worry over for another month i always get worked up before i go got the cancer clinic tomorrow fingerd crossed if i could draw a sword of damacles above my head i would:-/
What sort of car did you order something sporty 🙂
Love Jo x
Dear Dai
I am so very pleased for both you and Janet, what a blessed relief it must be. PN well you can put up with that for a very short while, and it will all get right.
As long as you can still plonk your fingers on the keyboard you can continue to amuse bemuse and abuse us. Just kidding about the abuse!
I am not surprises your in your bed, Peters Hgb was 8.2 on Sunday when we went for platelets (yes we visit the hospital on Sundays too, no rest for the wicked.) On Monday they gave him 2 bags of cells. which makes him nice and rosy again and means I can turn the central heating off for a few days in flaming June as he is not so cold. Joy of Joys.
Your on your way boyo and brilliant news… I notice we you and I and probably a few others use the royal [b]we[/b] when referring to results etc. WE really are in this together therefore she is allowed to jump the gun….. Official. What car did you order jag, jensen intercepter or something more sedate? Mine wold be a mini…………
Thank you friends all,
My relief that it is working was all that mattered when my consultant she say yes! But then the 13 bit blew me right out of the water – I was stunned. 13, one three, smile, Heaven around the corner.
The 8.3 and the PN are bringers back to earth but I am strangely comforted by them now… because they are causes, side-effects of treatment, not effects of the cancer… because that is under control and for a blessed while, be it 6 months or 18, it will not exist in my daily life… and if needs be I shall wear sun-glasses to keep it in the shade while I look and feel cool. 😎 Just so. 🙂
I seriously looked at getting a Volkswagen Sirrocco… until Janet told me to get serious :-0 so we settled on a Ford C-Max (new model) an excellent car and easy to get in and out of.
Yesterday I'd have settled for a 30 year old Lada. 😉
Dai.
Hi Dai
WOW that is fantastic news, I dont get on here much these days, but when i saw your post just had to comment. Well done and I am so pleased for you and Janet. Long may it continue. with much love michelle x x
Thanks Michelle,
I am hoping that I'm down to zero before the next cycle and that cycle 4 will be my last… but as always I will be guided by my consultant and if she wants a 5th then so be it… I don't want to rush into a remission on a weak basis.
Please pass on my best wishes to your Mum, I hope they manage to re-kickstart her Revlimid, even if it does need some firepower with the chlorwhatsit sp and save the Pomalomide sp for later.
Dai.
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