This topic contains 12 replies, has 7 voices, and was last updated by 
brocho 13 years, 1 month ago.
The start of Cycle 6 last Monday co-incided with the great news that my Kappa Light Chains reached 0 across the board, putting me on the invisible edge of CR – 'Complete Response'. This was of course wonderful news… but it still left me with 3 more Cycles to complete.
4 infusions in all for Cycle 6 but without the option of SuBQ… which seemed a possibility before I went on holiday… but Nottingham's SuBQ policy does not, it seems, include provision for ongoing treatments… just new cases… ah well.
Infusion 1 was wrapped in the CR News and I floated through the first few days but infusion 2 was not so great and a 4 day reality check of tiredness and ennui brought me back to the difference between medical progress and medicinal side-effects… I didn't start feeling anything like normal until last night… and then only marginally.
I went in for infusion 3 this morning feeling sticky and sickly with Dex showing off and my PN leaving my feet feeling lumpen and lifeless. Apart from needing the hand-warmer to tempt a vein into performing at the 3rd time of asking everything else went fine, with a nice 4 way chat between myself, an elderly afro-carribean leukemia patient and 2 new Myeloma patients… well, new to me that is… with both of them being around with MM for 4 years or more… much banter and sharing of news medical and family… making for a really nice hour or so. Then my Velcade arrived and with it my bloods results.
[b]Hb 11.9![/b] A new 4 year record.!
I have a dicky haemoglobin… its always low, due to the Gypsy blood of my Balkan Brother & Sisterhood… which caused me great problems as a child and beyond but which is purely coincidental to my MM according to my consultant. Basically it means my haemoglobin is small… with an all time best of 12.6… and that was while I was as fit as I ever fiddled as a full-time miner and part-time County Hockey Player. Before I went on on holiday a few weeks back I dropped to 8.1… causing the medics to give me a couple of pints of the red stuff which brought me up to 10.6. Last Monday I had reached 10.9 and today 11.9… the best since October 2007 (11.5).
Okay, I still feel sticky and a wee bit sickly… but I ask you… 11.9! One Happy Bunny on this lawn. 😎 😀 🙂
Dai.
Hello Dai, what great news! It's lovely to hear your readings are fantastic for you
As kev is there ( nottm city) next Monday hoping for the CR word from the prof:
Sorry your feeling sticky and sickly and hope it quickly passes!! And you continue to be a very happy bunny:-)
Love liz& kev xx
Hi Liz,
The side-effects will pass, they always do… but… I just realised how insensitive I have been in my post above…
[i][b]'everything else went fine, with a nice 4 way chat between myself, an elderly afro-carribean leukemia patient and 2 new Myeloma patients… well, new to me that is… with both of them being around with MM for 4 years or more… much banter and sharing of news medical and family… making for a really nice hour or s[/i]o.'[/b]
Forgetting of course the 2 nurses who joined in with the conversation and banter… the daughter of the female MM'er and my wife Janet who pulled everyone in and made sure no-one was left out.. what a plonker (me that is).
Dai.
Dai you are amazing! throughout your treatment you remain cheerful and full of fun.
I'm so pleased to hear your blood results are so good …. hurrah!!
The stickies and sicklies will pass so stay off the rabbit food but hope you remain a happy bunny for a long time to come!
love Nettie x
Hi Dai
Great news about the numbers. One thing, as I reckon it you have only two more treatments, and then you will be able to get on with your life, in remission, and hopefully be treatment free for a long long time, and hopefully time for side effects to subside.
Hang on in there, let's hope the next two treatments are much less distressing.
Very best wishes.
Mavis
Hi Dai
How did the holiday go,plus the weather,must have just been nice to get away from treatment for awhile:-/
Soon passes it seems like yesterday you were saying about starting Velcade,Slims just finished second cycle,wish we had your turn round for bloods and Velcade,we do it in 2 trips.60miles all together.:-S 😛 Tried staying around longest 9 am arrival treatment 4 30pm.
Hot water bottle works for Slim,tried without it 3 nurses 5 jabs later!! starting to bruise tells the nurses I beat him up,I could swear one of the nurses believed him for a minute:-P
It seems to be lucking good for you,I see you are still awake through the night,if you find any thing that makes you sleep let me know,thats about the worst Slim has ,just cannot sleep,so we sleep in relays,one in one out,dog does not know which one to go with:-P love Eve
Hi Dai and may you be a happy bunny for a very long time to come love Bridget x
More excellent news on the numbers Dai. Long may it last for you and Janet,
Love Mari xx
Hi All,
What a strange unconnected day I have had. In for the last infusion of Velcade Cycle 6 – wearing one insulated glove on my left hand as I drove in to keep it nice and warm… which encourages the veins to rise… Janet made me.
The day-case unit was very, very quiet… never seen it so… we even got a parking spot opposite the front door! But it was 1.15pm when we arrived… and 'between' clinics, with most of the staff on their lunch-breaks. So apart from 3 or 4 dozing 'clients', cooking slowly while being basted with multiple marinades, there was me and Janet and 2 of my favourite nurses.
We were straight in, barely a minute's wait, off with the glove, in with the cannula, first time, clean as a whistle, a quick chat and done by 1.45pm. My nurse rushed off with my HB test and came back within 10 minutes – 11.4HB and everything else 'Just So' or even better than Monday. Given that I have 3 infusions doing their rounds and my daily 'Clexane' injections… all designed to keep your counts low… I was/am ecstatic.
As we left people started appearing out of crooks, crannies and shadows… patients, nurses, admin… even the Prof smiled at me from the Nurses Station as I passed by… surreal.
So me and my girl raided MacDonald's West Bridgford (after a quick rummage around Lidls for the first time in an age) and set off for the Holme Peirrepont Water Sports Centre (River Trent side) to munch on 1/4pounders and fries (with milk shakes) and watch, feed, and tease the ducks various for a good hour or so – sublime. 🙂
Dare I say it? I feel good. (Brave Boy, Brave Boy). 😎
Dai.
Hi Dai
Just got back from holiday and great to read your upbeat post. Do hope thst 13 days later you still feel that post Velcade high.
All very best wishes for a much better few months.
Mavis
Hi Mavis,
Well I'd like to say that I'm still on a high… but… I started my week's 'rest' – the third week of the cycle – feeling in good spirits but I started feeling unwell with dodgy waterworks last Sunday and ended up with a high temperature. So I made the 40 minute journey into the day-care unit of my hospital on the Tuesday afternoon. I had phoned the unit earlier and I was told by a doctor to make sure I got in before 5.30pm as the doctors went off duty at that time. I arrived at 4.45pm to find everything closing up and the only available Doctor (not the one I spoke to) with her coat on and about to leave.
The nurse were still on duty until 6pm but there was no one able to test the bloods etc… until one of the phlebotomists hove into view and one of the nurses collared him. The nurses are wonderful. Before I knew what was happening the phlebotomist and his colleague had fired up the requisite equipment, took my blood and got the results back within 15 minutes. The doctor had waited for the results and once she was satisfied that I was not neutropenic she took off her coat and preceded to examine. Within the hour I was on my way home with a five day course of anti-biotics.
The anti-biotics have worked… sort of but I still feel hot and bothered with my temperature hovering around 37.5 for most of the week and reached 37.9 last night. I took a couple of paracetamol and my temperature has dropped to 37.0 and stayed there… but I am writing this at 4.30am with no sleep and none to come by the look of things.
Still… clinic this morning, followed by the start of Velcade Cycle 7… as long as my consultant finds me fit for duty. 🙂
Such is MM.
Dai.
Hi Dai
here,s to today a new day,and Velcade 7,good luck.
Love Eve
Hi Dai what rotten luck to pick up an infectionnits so maddening isnt it ! Heres hoping the anti -biotics do the trick sooner rather than later so you can get on with your next velcade. LAots of love Dai feel better soon Bridget x
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