I watched the programme last night and found it very moving. I often see patients in the day case unit in their early 20's, mostly with Lymphoma and even a MM patient just turned 30. In Alex's case it was an almost instant call of terminal illness and he was determined to make the most of the rest of his short life… although he was surrounded by a very loving group of family and close friends the real sadness for me was in his finding true love amongst the tragedy… everything changed then because I believe it made him realise just what an extended life could offer.
He was never in denial but the introduction of Ali made him want to fight and survive… something he already knew was not an option.
This was not a medical programme, it was an affirmation of courage and fortitude but nonetheless inspiring as a portrait of one young man's determination not to be defined by his illness.
Dai.
Hi Helen,
The muscle pain should be the residue from the GCSF and should go pretty quickly – I am so glad your numbers were good, hopefully enough for 2 SCT's (usually 5 million or more but 4 million will be enough).:-)
I hope you get your dates sorted out soon – there are plenty of back posts that give you information in that regard and Jet is just ahead of you.
All the best 🙂
Dai.
Hi Helen,
I had the Stem Cell Collection from h-e-l-l … 5 days on the m/c including 2 late night return visits to the hospital for very expensive Pleriaxafor booster injections which scraped 2.1million cells… the bare minimum for 1 SCT… and I wasn't 'wiped out' at all. Apart from needing the week-end to recover from a busy week I was Okay by Monday/Tuesday of the following week.
Most people manage to get enough cells after a couple of days on the m/c… I was unlucky after having six heavy doses of radiotherapy 9 months before which decimated my stem cells.
Good luck with your harvest and a speedy recovery with little to no effect.:-)
Dai.
Thank you Bridget,
You are right of course and the voice of reason as always.:-)
I have every reason to be happy and I know that I am… considering what I have achieved so far. I have said that I can't complain and to that I should add that I am very happy to be where I am… and hoping to be happier still as my treatment progresses.:-)
Dai.
Hi Scott & Gill.
I had my consultation yesterday followed by Velcade Cycle 4/1. My Kappa Light Chains reduced from 13 to 11 and although I was slightly disappointed my consultant was happy. She explained that CR starts at 18 and goes down to 0… so both 13 and 11 are well within the technical range of CR. On hindsight I am happy because I felt so bad/ill during V3 that I half-supected that my light-chains had actually risen.
The bad news lies with my left leg – which has been causing me problems for the past few weeks. My consultant would like me to complete the 8 Cycles – to hammer home the benefits… but if my leg gets worse during Cycle 4 she says we might have to finish there – wherever 'there' is… and while that will probably still be well within the CR range it will not be in as strong a position that 8 or even 6 might produce.
My dose has been slightly reduced once more V1&2 2.77 V3 2.1 and V4 1.77 – so its a double-edged sword. The reduction might well help reduce the side-effects, especially on my left-leg but conversely the stronger dose would reduce the overall levels quicker… I hope the balance works because I do not want to finish treatment until I achieve CR 0 if I can help it… although my consultant has said that they have reduced the Velcade treatments to once a week before now, which enables the body to cope better – we will have to wait and see.
I can't complain but to get this close… I will do whatever it takes to get that bit further. 😛 🙂 😎
Dai.
[b][i]'But by the time you buy the 12 inch hot dog and giant popcorn they get it bac[/b]k!'[/i]
Its a good job you didn't have one too – it would have cost a fortune! :-0
Seriously though Min, its good to see Peter taking an interest (in the weights) and showing a willingness to get out and about (the cinema). It would be so easy to say 'later… or another time'.
Here's to a gradual build up of energy and interests.8-) 🙂
Dai.
Hi Jet,
[b][i]'I've had different responses from different medical staff regarding how I'll actually feel in terms of energy, weakness, appetite, etc.
One nurse gave me the impression that I'd be completely wiped out, have no energy, need to sleep a lot, lose interest in food and not want to see anyone or do anything for quite a few weeks and I imagined feeling as awful as I felt in January prior to diagnosis. Another nurse, when I was having a Zometa infusion the other day, gave me the impression that it could be as mild as I felt after the chemo prior to stem cell collection, which just made me feel a bit more tired than usual.'[/i][/b]
From sitting in the day-room on Fletcher Ward (my room was not quite ready) having my Mephalan and sucking on the ice-pops provided by the nursing staff… to leaving for home with a bucketful of meds took 19 days.
For 14 of those days I felt only slightly worse than the description provided by Nurse 'B'… the other 5 days (from day 10 to 15) I felt more like the description given by Nurse 'A'. It did not help that Janet started sniffling during the night of day 3 and was not considered fit to visit until day 18… but in a way that was a blessing because she did not get to see me when I was at my worst.
Even at my worst it was only a matter of total lack of energy and ennui… I did not feel 'ill' in the generally accepted sense.
They will start the 'daily bloods' a couple of days after your Stem Cell's return… when your levels have 'bottomed-out'… looking for/waiting for evidence of the rise in your neutrofils. The day will come when the results come back as 0.1.:-) As long as there are no other underlying problems they will allow you to go home when your reading reaches 0.5. (I was kept in an extra day because my platelets were a tad low).
From my own experience, and from those of my contemporaries, there is nothing to be 'fearful' of. Just accept that there will be a period when you may well feel 'bottomed out' but that this period will pass quickly and it will be just as quickly followed by the time for home recovery and hopefully a long and healthy remission.
Blessings and best wishes.
Dai.
I agree with Gill… good news is in short supply at the moment so your news is most welcome.
I think that sometimes people are reluctant to post items of good news, remissions, successful treatments etc in case it is deemed to be crowing or being insensitive when others are going through the mill or just starting their journey.
Personally I think we all need to see the success stories… it shows that it is possible to achieve good results, remissions and other periods of reasonably good health… if not with one treatment then with another.
Good news? Bring it on… and give us something to strive for.8-) 😀 🙂
Dai.
Bara-Brith is basically a Welsh fruit-loaf (literally 'speckled (or mottled) bread'. It is delicious on its own but much better with butter. Janet has her own prize winning recipe but Delia's is also very nice. Janet won't pass hers on 😛 – so here's Delia's. 🙂
http://www.deliaonline.com/recipes/type-of-dish/autumn/bara-brith.html
'Man cannot live on meat alone' but Bar-Brith's a different matter.;-)
Dai.
Very, very interesting. It works in a similar way to Velcade… I'm wondering if this is in trial somewhere in Myeloma World… if not why not? Is it a novel agent or does it need a pal (Dex/Thalidomide etc.,) or is it a genuinely new agent that just needs letting loose?
I'll watch this space. 🙂
Dai.
I lost 1.5 stones initially but nothing since. It was good to be able to fit into trousers and shirts comfortably but since starting CDT 2 years ago I have put a stone back on… >:-( :-0
We eat healthily, with lots of fruit and vegetables and although we enjoy the occasional take-away and some of Janet's wonderful home baking it is always in moderation and way below the pre-myeloma levels. Neither of us drink alcohol, we have never smoked and since Janet was diagnosed as a type2 diabetic we have watched the sweet stuff very closely. So I am baffled by my weight retention.
Well, thinking about it I suppose my exercise levels have dropped dramatically and most of my weight seems to be around my stomach, evenly distributed rather than a beer-belly and I feel bloated all the time rather than bone-fide fat. I have been taking Movicol consistently for 2 years and I always feel bloated after taking them… until they work… and then I have a 2 hour window of opportunity to dress to the nines and look good… if I only had somewhere to go at 4am in the morning. 😀
Anyway, as my Nana used to say: 'Fashion is just for passing in the street'… usually followed by 'Do you want some home-made butter on your Bara-Brith?'
Mmmm…. Bara-Brith and full-fat butter… JANET!!!!
Dai.
Thank you to all,
I am feeling considerably better today, the one fly in the ointment being the PN in my left leg which is affecting my walking… I don't believe I could drive at the moment and I'm not having that! I have managed without a stick since I finished CDT and I don't want to start now… not through side-effects from treatment I don't – so I hope that that improves somewhat when I have finished with Velcade, 😎
I have a week's holiday at home in Fishguard, Pembrokeshire from 3rd of September… a chance to meet up with some dear friends, play a gig and share a house with two of my brothers and my baby sister (and their spouses) for a week means more to me than a fortnight in the Bahamas… although I wouldn't turn my nose up at that either.:-)
I have my fingers crossed for CR Gill – it was mentioned in dispatches… but by a junior doctor who had no evidence… still, I'll know by tomorrow lunch and then, hopefully, my last cycle of Velcade,
I don't suppose they will bother with a PICC line if this is to be the last cycle of Velcade but I am surprised they didn't consider one last week when they were decimating my hands and arms… which look a right mess even now. The trouble is I must have seen a dozen doctors last week, including one of my consultants but none of them (excepting a late night registrar) more than once… so there is no chance for consistency. On the Monday night, (they woke me at 1:50am) when they were trying for the fifth cannula since Saturday morning, the night sister had a trainee nurse trying to fit one. :-0 After a couple of attempts where she confused tracking a vein with deep seam mining I gave the Sister a look which said 'enough' and she took over and got it first time… the attempt site remains my largest and most painful bruise.:-S
Hopefully tomorrow evening will find me a happy chappy, back on track and charged with positivity. 😎
Dai.
'Haha to Dai – "quite often" – LOL! I think we've seen each other at the hospital once! And once at the Info Day.' 😀
Well I have only known of you a few months… 🙂 and actually its the Info day, plus twice at the hospital… we came out from our consultancy meeting and you were in the large waiting room… but you were head down, deep in conversation, so we didn't disturb you.;-)
I'm so glad that your Harvest experience was so positive… I hope the transplant is as successful… with little to write home about and out before you know it… some are like that. 🙂
Best Wishes
Dai.
Thank you Jo and Sarah,
All three of my children are great singers, my eldest Becky has a wonderful resonance and tone to her voice but saves it for karaoke while Ross is happy to play guitar and sing for his wife and son.
Amy is the professional. I have been extraordinarily proud of how she conducts herself as a professional singer.. and of the quality of the shows she puts on… last year alone she played over 250 gigs – travelling all over the UK and Europe… I couldn't keep up with her… flying out Egypt for 2 days… back to a hotel in Sheffield, followed by a couple of days off… then flying out to Lanzarote for 4 nights before a 7 night tour of Wales/The South East/West/Cornwall… then back to Egypt and begin again… A very busy and frenetic life but the top hotel groups are good to work for and she has made some excellent contacts. How she manages to perform through sniffles and colds is beyond me… 'Technique Dad, its called technique'. 😀 😐
This ABBA show surprised me… but I can see how it makes sense… especially as she and her fiance split up after she had been in Majorca only four weeks (the time it took to meet up with the other three ABBA's and rehearse the show in readiness for the season).
He encouraged her to go.. and then told her he wanted to split when she flew home for a close friend's wedding. They have split 3 times in 10 years and although I was very concerned for her, I accept absolutely that her greatest feeling about the split (along with sadness) is one of grateful relief.
She Skyped the other day to tell me of a series of joint shows with South Africa's answer to 'Il Divo'… four classically trained singers who, having recently left university together, are having the time of their lives. The shows (at weekend town festivals) are a mix of' 'ABBA' and 'Il Divo' where Il DIvo sing ABBA, ABBA sing IL Divo and both do a couple of medleys together – from a large, two-teir stage. Amy says that she can now sing a third of the songs in Spanish… and the way things are going she will be speaking like a native by the time she leaves at the end of October.
She and the other ABBA'a have two apartments next door to each other, literally 5 minutes from the beach. She works 6 days a week up until the schools break and then it will be seven + the occasional festivals. She gets up about 11am, breakfasts on the balcony or at a local cafe and usually heads for the beach about 12.30. They travel the island for their work so usually they leave the apartment at 6/6.30… arrive, set up and sound-check by 8/8.30pm and go on stage for their first set at about 9/9.30pm – for 45minutes. The second set normally starts about 11pm and goes on to about 12.15am. They arrive back at the apartment at about 1/1.30am… and go out for something to eat and a drink… with bed at about 2/2.30am.
Somebody's got to do it. 😎 😀
Dai.
btw… Amy sings 'Frida's' part while 'Agnetha's' part is sung by Irina (from Romania)… 'Bjorn' is also from Romania while 'Benny' is from the Czech Republic. They are all consummate musician's and singers… they have to be because sometimes they are asked to 'support' or play music (and provide backing vocals) for drop in 'Stars'. Their costumes are replicas of the actual costumes used by ABBA, as are their instruments… their preparations for musical and vocal authenticity are second-to-none.
The one thing that made me laugh was that Irina is a natural brunette while Amy is a natural blonde… yet because of their vocal tones and ranges they have to wear wigs. I have watched a short video o them performing at a festival and I have to say, proud Dad to one side for the moment – that their looks and their sound is jaw-droppingly good… and they have to do it night after night after… well, you get the picture… but they all take great pride in maintaining the highest possible standards and every night has a brand new audience eager to see just how good they can be.
Still, I miss her… Skype notwithstanding. xxx
Dai.
[b][i]'Sorry to hear that Gordon's second SCT has not done the trick. Stephen is seeing his specialist on Friday to find out if his second SCT has helped.
He is feeling quite unwell at the moment so I am worried that the news will not be good. I hope Gordon's new drugs help and wish you both luck
Gill x[/b]xx'[/i]
I make that today. I will be praying, wishing, hoping and crossing parts various for good news for you and Stephen Gill. I have been reading your reports and I know that Stephen's recovery has not been in the same league as the first time (where at this stage he seemed to be consuming stacks of 'T'Bone steaks for fun while loading his wheelbarrow for France…) perhaps a bit fantastical on my part but you know what I mean.
I'm hopeful that Stephen's poorer responses and lengthier, more troublesome recovery is part and parcel of second time-itis and that they will introduce a regime to get him moving forward…
As I have said before, you two are my MM mentors and to some extent my beacons. If Stephen was to gain an extremely good and lengthy response to his 2nd SCT I for one will be extremely happy for you both… and while the signs, in terms of general health, are not indicating fireworks and celebrations… who knows? It might be no more than a slow, slow burning fuse… and why not?
Much love and best wishes to you both today.
Dai.
