[DaiCroParticipant]

Just a quick update to say that the reduction from 2.77 to 2.1 seems to have helped with the PN in my hand(s). My left hand has eased and I am now able to pick up my guitar and play – although mainly strumming with little finesse… but it is promising nevertheless.:-)

My HGB also moved up by its own accord from 8.3 to 8.8, so good news there too. Generally tired but less general side-effect than normal so far – hopefully this is all down to the reduced infusion of 2.1… nearer to my 'individual' dosage. 🙂

Two more infusions… Monday 27th and Thursday 30th and then a consultants meeting on Monday 4th July during my 'rest' week which will determine where I am from my wonderful reading of 13 and how many more Cycles to go. 🙂 😎

Dai.

[RozParticipant]

Well done!!

Keep up the good work.

All the best
Roz

[mhnevillParticipant]

All the best Dia! Keep that music coming!

Good luck for the forthcoming meeting. It is "our life in their hands" isn't it!

Love

Mavis

[MariParticipant]

So pleasd to hear you can play again, i know that must mean a great deal to you. It sounds as if you are responding marvellously, keep going.

Also good to hear you doctor is considering something approaching a 'personal dose' for you as well, you will surely tolerate it so much more

Best wishes for the rest of it,

Mari x

[brochoParticipant]

Hi Dai glad to hear the pn is lessening and your bloods are behaving It wont be long before you are playing comfortably again , I cant imagine anything keeping you from your guitar for long !! love Bridget x

[DaiCroParticipant]

Quick update for those following the Velcade/Dex treatment plan.

I had my Velcade Cycle 3 Infusion 3 yesterday and apart from exhaustion (no doubt helped by the heatwave) and general fatigue I seem to be holding up well. My PN is manageable but there is definitely a tighter, compressed feel in my feet… it sometimes threatens to turn into PNProper-Job (technical term) but has failed to do so yet – which is a blessing because they have reduced my infusions from 2.77 to 2.1 this cycle and I want the dose to stay as strong as possible to get the job of making that reading of 13 > 0CR. When they do (Not IF!) then there is the possibility of 1 or 2 more cycles to 'Make Sure'. I started Cycle 3 on 13 which was wonderful news, so I am hoping that this cycle might be considered as 1 and the next 2… I really do not mind if there are another 2 but given the PN in my hands in particular (still there but no further progression) I would prefer to get into remission with no further damage – I just have too much writing – novels and songs to complete before the next stage and my fingers do all the walking for my talking… if that makes sense. I know you can get some seriously god dictation packages for the Mac but Terry Pratchett doesn't use them so… Mind you, he does have a personal assistant whom he dictates to… and Janet used to be a PA… Janet, Oh Janet!!!! Look away folks, this could get messy.8-) 🙂 :-0

Last infusion of Cycle 3 on Thursday before my 10 day rest (the rest bit seems to kick in on about day 5 or 6) BUT… I have a very important Consultant's meet next Monday which should be very enlightening… 13>0 – 13>0 – 13 – 0 positive vibes……………….:-D

Dai.

[MinParticipant]

13>0 13>0 over and understood. Now close your eyes and visualise… some people actualy believe that stuff and whatever it takes…. Good Luck to you.
I am sitting here listening to the Tennis while Peter is watching it having missed all last weeks games and sharipova or whoever she is is making a hell of a racket (pun) while the little dwarf. whose name sounds like fungi shuie….is as quiet as a mouse. Can you tell I am not a tennis fan.
at the Infoday I went to they said using coconut butter was very useful for PN… Its probably the only side effect Peter has [u]never[/u] had from this sodding disease >:-(
Im curious to know did you lose any weight during velcade? My poor man looks like a matchstick man now got to feed him up like the fatted calf.:-P
Min

[DaiCroParticipant]

Just finished watching Sharapova stuffing the Bulgar 6-1 6-1 poor girl.

Weight loss? I should be losing weight, eating very little really… but I have developed a beer belly from whatever. wherever? Dex I imagine, I just feel bloated all the time, regardless of how many poo juices I drink… its frustrating because I have several really nice summer short shirts that don't quite fit… I mean they are Okay but I like a bit of room in my shirts when they hang out… still, if that's my main worry then I can't be that bad. 😀

I used to use Coconut Butter when my legs balloned under warfarin but my legs are perfectly fine now… Janet! Where's the butter? Hold on, this could get complicated… it doesn't have to be… but I'm on Dex and the tennis has finished…. 😀 Janet! I'm really calling you know… >:-) oops, she's here. :-0

Dai.

[RozParticipant]

Hi Min

Michael went right down in weight with Velcade. He weighed less than an eight yr old they told him, he had dieticians ( spelt that wrong) coming around him all the time.

Hope Peter starts improoving soon

Love to you both
roz

[DaiCroParticipant]

OKay,

Velcade Cycle 3, infusion 4 over and done with. In at 10:30am no time to even sit down… My favourite lead nurse Jenny, whipped me straight in, a bit of kefuffle finding a vein but then it turned out that Bob was my uncle and I was out into the pouring rain by 11:40am… course record.:-D

So its a Dex day today and then 10 days rest before my next consultation on the 10th of July, followed (hopefully) by my last Cycle (No.4).

I started Cycle 3 with a flurry of excitement when we found that my Kappa Light Chains had descended from 264 to 13 in 2 Cycles… so I am hopeful that the good work carried on and that I reached Complete Response (CR) sometime soon during the 3rd Cycle… and that this will count towards my treatment plan (My consultant said that if/when we reached CR she would authorise 2 more Cycles to 'hammer it home'.) So I am hoping that those last 2 Cycles include Cycle 3 (with 4 as the last).

A bit complicated I know… and if I have to have 4 & 5 then all well and good… but even with a slightly reduced strength during Cycle 3 my PN is hovering on the line between manageable and full blown… I can feel it, live with it but I don't want it to cross the line… I know that it can regress but…

A little bit cowardly custard but if it needs it bring it on… just staying positive for the consultant's meeting on the 10th and then I'll let you know where we go from here.

I hope that this mini-blog is of some help for anyone about to traverse Velcade… I will, of course, pass on any other Velcade related treatment/procedures that may arise as an issue or inquiry. 😎

Best wishes…

Dai.:-)

[GillParticipant]

I am pleased that you are doing so well. Stephen still has PN in his feet but I believe that this side affect does go eventualy.

Gill xx

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