Don't you worry too much about the support bit David my friend… you are well in credit on that score… just drop us a note every now and then telling us about the wizzes and the whatknots… all the good stuff… and we will see you you in 3 months… enjoy it and we will Vasbyte while you are away. 😎 🙂
Dai.
How is John doing Angelina? Any change? Back home or still at the hospice?
Dai.
Yeah, well… pick on the plums not me… 😀 🙂
I bet you are just a great big softie Lancastrian really… I often find that when the scousers and mancunians and suchlike drop their local guard the sweet natured lancastrian comes shining through… and the Crowther bit of me came down to work on Fishguard Harbour 1918 from Collyhurst, Manchester… so there's a bit of that in my make-up too.:-)
Dai.
Hi Min,
Please excuse me for treading water in the carer's section… and I'm a little bit frightened of Eve… [i]so I'll keep this quiet and down to a minimum…[/i] I just want to say how much I admire you (yes all carer's of course) but you in particular… because I have followed your journey from the start and realise just how much you have both been through… but particularly I have been taken by your strength of spirit and your phlegmatic refusal to be bludgeoned by your responsibilities… all of them.
Shhh… that's all.
Dai. xxx
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.:-)
Hi Meika & Christin,
It is always awkward to say welcome when you would rather be saying anything else but you know what it means…
On to David… (that makes 3 active on the board… I'm a Welsh David… so therefore Dai.:-)) he is bound to be in shock… the pain and discomfort will not be pleasant but they are manageable and they are surmountable, given time and the pain will become a secondary issue. You say he is only 48… so there is hope that he is not totally technophobic…meaning you might get him to interact on the board at some time… I hope so.
David needs to get off and out of his bed, he has a life to live and he has a long, long way to travel with MM, so he might as well start packing for the journey. MM, believe it or not, is akin to an extreme sport and does entail a lot of head done and yomping to the finishing line(s)… (s) because there are a lot of them and there are going to be a quite a few resting points and hopefully quite a few years of remissions, where he will feel about as normal as it is to be notwithstanding any bone damage etc., that might change his boundaries slightly.
I had my mantra 'Whatever It Takes'… and that lasted me throughout my initial chemo, stem cell harvest and Stem Cell Transplant. When I relapsed I changed it to suit and I am hopefully getting ready for my second bit of remission… David will need his mantra's, he will need positivity…. please take note of my next statement, I believe it passionately and completely…
The biggest killer in MM is NEGATIVITY… sorry for shouting but it needs to be heard. Negativity comes in many forms, including sympathetic, smiling faces and well meant endearments and encouragements… don't let them cross your threshold, don't be frightened or scared to send such thoughts… and people from your door. David need to be positive, truly positive… he has to believe that the meds will work,… they will. He has to form a trusting relationship with his medical team (as a joint, well informed partner) and then trust them and then he has to maintain a positive outlook and reaction to all his treatments to ensure that he gets the best from them… which will include great swathes of normalcy… possibly years and years of normalcy.
Unfortunately David is young and fit… far too young for such a disease BUT fortunately David is young and fit and that is going to stand him in great stead for the fight he is about to take on.
Personally, from everything I have read and consumed, I do not believe that a cure for MM is around the corner… certainly not my corners BUT I do believe, NO… I know that there are a whole bunch of meds and treatments that will knock the damned disease back a few notches as I progress… David is different… these are exciting times for MM sufferers… the same sort of fright as white knuckle frighteners I'm afraid but there you have it 😛 but David will be amongst them… and if he can last the journey, with a positive outlook and positive outcomes then he could quite possibly be in the generation where the lines between 'incurable but treatable' become very, very blurred indeed.
Lecture over… tell him to get out of bed.8-) 🙂
Dai.
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.
Hi Jo,
Roz has got to be strong for her own good IMHO – she has done so well up to now, I just feel she needs closure (said with love and support if you are reading Roz). xxx
I have got 3 CD's to Bring out before Xmas Jo:
'Country Bound' – Mixed genre Country style songs.
'King For A Day' – A chronological account of my Folk Songs (Most in demand by friends and family)
Songs In The Key Of 'D' – Indie, pop, jazz-song, blues, rock (My personal preference but…)
I have most if not all of my songs recorded but they need remixing and house-styling (volume, panning etc.,) and most of all collecting, selecting and collating). I will have 14/16 songs on each album from a choice of 140+… and I know I will upset some friends, family and you, my fan 🙂 if I get the choice wrong. Janet will have the final word… I trust her judgement as a listener.8-)
Dai.
Hi Wendy,
When you get your profile picture up you should be given the opportunity to 'crop' the picture… as you do it should make the picture smaller… just click on the photo until it fits into the 'copped' square and then we should be able to see you.
If this fails we will call in one of the big tech names – Tom & David spring to mind.:-D
Dai.
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.
Hi Gate,
I appreciate that you may be exhausted by the treatment… but if you do 'pop' in… just take note of our love and support… and when you are ready, if you are able, please let us know how you are. 🙂
Much, much love…
Dai xxx 🙂
Its allowed Roz,
Everything is allowed when you are grieving… I followed every second and every word of Michael's passing and I know that he never got that one chance to recover from the infections that would have given him a chance with the treatments. I also remember how much you struggled to keep connected with Michael with little to no support from his family.
I wouldn't give his family the choice with his ashes if I were you… I would take my holiday to the south coast and scatter his ashes in a place you both loved, say your goodbyes properly and then you can start living with his memory… good, loving and happy memories of the Michael pre-myeloma, not the Michael who was so ill and so tired of fighting this damned disease.
It is your life, not theirs…. do with it as you will. 🙂
Dai. xxx
Well done Steve,
That sort of energy and mobility is a testament to good medicine and Steve's iron man will.8-)
I have come to terms with the fact that 'that' Dai Crowther has been confined to history and that this one is just happy to be able to walk around unaided… although I must admit that I have been 'banned' from trying to recapture my 'action man' status.:-)
I was promised pins for my arms and left femur… before my SCT… So I am going to re-approach the subject once I get my Velcade aided 'CR'. Anyone else had them?
Dai.
Its old hat for some f the regulars here but I was diagnosed with Secondary bone cancer, primary unknown and that prognosis stayed with me for 14 months. They tested for MM but only for heavy chain, missing the urine test, which my Nottingham consultant called a 'medical student level mistake'. After just 3 months my local hospital passed me onto a hospital in another area, 80 miles away, to the Head Of Nuclear Medicine who had treated my crushed vertebrae… under 9 months of his 'care' I received 1 shot of radiotherapy for shoulder pain… he took the notes from my local hospital as 'bible' and did not take 1 single blood test or carry out any other form of investigation apart from a series of x-rays after being being pressurised by my GP to give me a CT Scan (the Radiologist called her boss in during the CT and he sent me for the X-rays – which showed very aggressive uptake in 8 areas not marked down by the local hospital results.
My GP told me that my consultant wanted to 'see' me urgently… he told me that I would now most probably get the investigations and treatment I should have been getting from the stat (instead of the disbelief of my complaints that had been his usual MO).
Instead I was treated to a diatribe consisting mainly of my inability to 'accept' my condition… that until the primary showed itself there was to be no treatment or investigation of any type 'whatsoever' and that, in his very own words, 'I will more than likely see you on my mortuary slab and still not know what your primary cancer is'. To which he sat back in his chair as if to say 'well that's shut you up'. I just got up and told Janet, who like the nurse in attendance could hardly believe her ears, that we were going:-0
Four weeks later we had upped sticks from out beautiful Pembrokeshire, travelled lock, stock and barrels 270 miles and found ourselves a rented house and an excellent oncologist in Nottingham City Hospital (thanks to my GP) who diagnosed me and transferred me to my haematologist team within three weeks… and I was away. 😎
And no thanks to the Doctor I am still here… I have no doubt 'whatsoever' that if I had stayed under his care that I would have been dead by Xmas, 2009.>:-(
Dai.
Poor Peter and poor you too Min,
There can be no excuses for such poor care, not being flagged as neutropenic is detrimental care and someone should be held to account. The one thing Peter does not need right now is infection and they should be taking every precaution… so let's hope they can sort his neutrofils out sharpish so he can carry on with his treatment.
I will be rooting for him to get over the cough so that he can get some sleep, I know how precious that can be when you are in hospital,
Take care of yourself too, please.
Dai.