[DaiCroParticipant]

Okay, where to start?

I went into clinic today for a meeting with my Specialist Myeloma Nurse just to check that all was well following last weeks short stay in hospital following my high temperature.

I had bloods taken and then Jenny took us to a consulting room for a chat. I was admitted last week with my HGB at 9.3. 24 Hours later it was 7.3… so 2 bags of blood were ordered and received and my HGB went up to 9.6. My WBC were 3.8 , my Platelets 109 and my Neutrofils 1.5. Fine, that's where we left it. I was told that while the Bendamustine was active in my system that my bloods might drop a little (they did on Cycle 1 and the strength was adjusted accordingly for Cycle 2). So I was interested to see where they were today.:-)

Jenny had a quick look and then showed me the results. HGB 11.8 WBC 3.7 Platelets 88 and Neutrofils 0.77.

So my HGB is the best I have had for years (usually 10.5 is very good for me) and I am Neutropenic??!!! :-0

Go figure, as my American friends often say. Jenny consulted with a consultant and I have been given 2 GCSF injections to administer tonight and tomorrow. Although we usually get given GCSF injections at stem cell harvest time, to shift the little b*ggers off the side and into the bloodstream the primary use of the drug is to boost white blood cells and bolster our immune system… news to me but there you go. I am now half-way through my first rest week with next week to follow before Cycle 3 in the week beginning 25th February… Jenny told us that usually this period is the time when our blood levels should start improving on their own (as per HGB) so hopefully my Neutrofils should improve somewhat over the next week or so. I have been booked back in on Monday for a look see and check up. 😐

Jenny asked if anyone had discussed my Light Chain test results from Cycle 1 and I told her no. Now the last I was informed my Light Chains were at 525 (beginning of December) which prompted the end of Revlimid and the option of Bendamustine to which I reluctantly agreed. But Jenny stunned me by saying that when I started Bendamustine at the beginning of January my Light Chains stood at 2200! So after coming off Revlimid, where my Light Chains had increased by 400 over a 10 month period and where I am still convinced only did so because my undiagnosed C: Difficule had stopped the drug from being properly absorbed… my Light Chains had increased by 1600 in 4 weeks! 😛

But hold on… it's good news really. Despite this surge from 525 to 2200 in 4 weeks the 1st Cycle of Bendamustine had brought my Light Chains down from 2200 to 840. Excellent news! Although my light chains are still above where I thought they were to start with it shows that Bendamustine is working for me… Hallelujah!8-)

Bring on Cycle 3… as long as my bloods can stand it.

BTW 1 – I reported my problem right shoulder and Jenny arranged an X-Ray there and then and she will ring me tomorrow if any action is needed… (it's getting better so I'm hoping it's okay). 🙂

BTW 2 – I asked about my cocktail of antibiotics and she said that although there is no centralised pharmacist keeping an eye on compatibility my consultants do and the drugs each had a purpose for either my high temperature or my Bendamustine Chemotherapy standard issue. I still have 2 long-standing antibiotics – Vancomycin for my C: Diff and a.n. other which I take on Mondays and Thursdays which Jenny tells me are 'just in case' to ward off chest infections for which Bendamustine is famous for.:-)

So there we are. Good news, bad news and old news that nobody bothered informing me about… but all in all (assuming my Neuts come back up) excellent news in the shape of a Chemo doing its job and keeping me in the game. 😀

I thank you for listening. 😉

Dai.

[PatGParticipant]

Hello Dai,
I just wanted to say that I find your posts most informative and very easy to read. Although not directly relevant to my condition (AL Amyloidosis),because the treatment is so very similar I do find a lot of information on this site very useful. Not to mention the general upbeat nature of the people on here who really make what is a very difficult journey at the best of times, understandable and bearable to say the least. God bless you all I say ( I sound like Tiny Tim don't I?)
The fact that ordinary people can explain what is happening to them in language we can all understand and for us to be able to read and absorb the information when not stressed at a consultant meeting is so very helpful.
I follow all your stories and cheer you all on (silently as I do not have much to add except encouragement)but support is support however it reaches it's destination.
You can probably tell from the time that this is a Dex high for me today which means that I will be catching up on all things domestic before I crash tomorrow. At least by now I know the pattern and can plan things around it. I am on VCD cycle 4 of 8 and am very anxious to get the treatment finished as I want to go to Canada to see my new (and first) granddaughter Beatrix. She is growing well and weighed in last night at 3lb 8oz. I will be there before her first birthday! Hope your new arrival is doing well as are you at the moment. The fight is worth it and it certainly does seem to be to going in the right direction.
Keep up the postings Dai – I for one really look forward to following your progress.
Keep well
Pat
xx

[tomParticipant]

Hi Dai

And a Well done from this corner of our world 🙂
I never asked about my tablets cos am still not on anything and am free to roam for another four months 😀 .
You keep up the Good Work and as the bad bits drop in I know you will roll with them like a Pro.

Keep well Dai its soon spring 🙂

Love to you and Janet

Tom Onwards and Upwards x

[DizzylizParticipant]

Hello Dai,

That's great news, here's hoping you continue to respond to your new regime, by the way isn't it great to have Jenny back in clinic, I think her and Sarah make a good team.

Keep well Dai and Janet, love liz & kev xx

[jmsmythParticipant]

Dai great news. Hope things go on improving. I too love reading your post, keep them coming

Hope Janet is doing well and the new baby bringing you loads of joy

Take care
Love Jean xx

[KeithH17Participant]

Hi Dai, I also had GCSF injections when in hospital to boost my WBC. My Hb was 9.1 Neuts 1.8 and Plts 12. I was brought back in for Plts Thursday which should have given them a boost. I will be back Tuesday for bloods and then Zometa just hope I don't need any transfusions. Good to see the Bendamustine seems to be working for you. The problem with my treatment is there is no break from it so just as you start to feel better you're back on it again.Anyway I'll battle on and hope my body can carry on taking the flack. I'm visiting the hospital 2-3 times each week and just need a break from it. Still get tired and spaced out but hope this clears up in time.
Take care Dai and I hope things continue to go well for you.

Keith.

[BADGERParticipant]

Great news Dia

just what we all need to hear a new drug working for you long may it last
lOVE jO X

[meganjaneParticipant]

Hi Dai,

That is wonderful news, I hope the neutrophils behave themselves, Phil has had two short courses of GCSF injections since he has been home from his transplant and both times they sent his neutrophil levels way up (I think they went to 18 once!) and although the neutrophils dropped again once the injections were done they did not drop as low as they were so the boost does seem to help.

Good luck for tomorrow.

Megan

[Author]

Posts