Hi Keith,
I do hope that you manage to get home tomorrow… I am sure that the sense of release you get from leaving the confines of the hospital will act as a physical boost… it does for me.
I was admitted last Monday am after my bloods and a consult with a temp of 39.3 but fortunately they got my temp back to normal within 2 hours… through the magic of paracetamol.:-/ They took blood for the usual cultures and told me that if my temp stayed normal I could go home Tuesday afternoon. It stayed normal as they gave me 24 hours of IV antibiotics but come the next morning, following the 6am bloods, they informed me that my HGB had dropped from 9.3 to 7.3 (a result of the high temp apparently) so they were keeping me in for another 24 hours + 2 bags of blood later that evening. This was followed by an extension of the IV antibiotics and 2 other kinds of oral a/b's.
I was fortunate that everything fell into place and I was allowed home on Wednesday afternoon. My temperature stayed normal throughout and I don't suppose they will ever know what caused the spike. I do know that Cycle 2 of my Bendamustine will have to do with only 1 infusion… my consultant said that Bendamustine is a strong chemo and would have driven my bloods down to the point where I would have been neutropenic… she is happy that I have enough juice in me to be going on with and Cycle 3 will continue as normal.
I am convinced that my temp was connected to lack of fluids. I had 2 bad nights with chronic lack of sleep (Friday/Saturday) and I woke on Sunday and took my morning meds then fell asleep again… I didn't wake until 4.30pm and my temp was 38.6. I managed to get it down to 37.8 by drinking for Wales and then took 2 paracetamol. It stayed at around 37.6 all evening so I took another couple of paracetamol and fell asleep. I woke at 4.30am with a temp of 37.2 and thought I had cracked it but at 7am it was 39.2 so I rang in. As I had a consult that morning they told me to come in early and the rest is as above.
I have felt good since coming home (apart from my right shoulder which is 'frozen' and quite painful if I stretch) but generally I feel good… excepting that I fell asleep after my morning meds and woke an hour ago with my temp at 37.5… bit of a panic but I have drank a lot and it has stopped climbing.
I am convinced that lack of fluids has a direct effect on my temperature and I need to keep my intake up at all times. It seems stupid to compromise my health because I 'forget' to drink.
I wish you all the best in your battle to get out and stay out of hospital Keith… I hope that the CDT does its job and continues to harness your PP's and bring them down to either 0 or at least a good, controllable plateau.
Now then, where are those pesky paracetamol?;-)
Dai.
Hi Tom,
I realised that I have Face-Time on my main Mac… I will check it out and set it up… it will be interesting to see who in the family have got it already. Thanks for the reminder.8-)
Dai.
And what a night… the Dex buzz kept on working until 4am when I finally zonked. I woke at 6am and took my meds (I am on 5 different antibiotics this week… down to 3 semi-permanet from next Tuesday – in the meantime I have had to resort to a chart because of the distribution during the day with med-takes at 8am – 2pm – 6pm – 8pm & 10pm. It's easy to miss a med-take or go for the wrong med, so a chart has been devised to get me through until 3 of the AB;s finish their course life. 😛
Hey Ho and dozy. 😎
Dai.
Tom, Mavis, Jo, Vicki & Colin
Thank you all for your support and best wishes… it does me the power of good to hear it and see it, knowing that friends, that I may never meet are out there plugging for me… thank you all so much. 😀
Dai.
Hi All,
Having Grandchildren is one of my greatest joys and also of of my saddest regrets for obvious reasons… but saying that I have a range of ages.
Starting with Becky with Matthew at 16 in March 6' 2'', an intelligent, good looking boy, who has a lovely, slightly dry sense of humour, is caring and sharing, loves his Mums and plays the guitar like a pro (my influence and unashamedly proud of it… if pride comes before a fall then bring it on). 😎
Kirstin and Andy gave us Alfie who will be 7 in May… way too intelligent but so grounded, a joy and a half. His sister Edith, 5 in April (born 2 days before I was first diagnosed with secondary bone cancer, primary unknown) Such heights of joy followed by a life's best low, now that definitely is life. 😛
Edith is a throwback… absolutely gorgeous of course… but her Mum and Dad are both solicitors… well Kirstin is a Charity and Trusts specialist in a Nottingham City firm but Andy is rather a big shot in commercial and contracts law for Boots, taking him hither and thither, Switzerland, Monaco, Chicago and Milan last year, nice work if you get it etc., but both of them are very grounded people and it's easy to see where Alfie gets it from… but Edith? Since her first steps and words (one followed the other in a space of 2 weeks) she has been all Peppa Pig, fairies, princesses, ballet, everything pink and flowery and as girlie girl as it is possible to imagine. She loves to sidle up and start telling you a 'made up' story with big pink beginnings which eventually trail off as she runs out of either words… or pink. I am besotted by her.:-D
Ross and Kelly started with Owen who weighed in 3 years ago in March and now he has a brother… Ethan James. Matthew is in Mansfield, 20 miles away, a hop, skip and jump. Alfie and Edith are 4.45 miles way… a hop… but Owen and Ethan are in Kent – Isle of Sheppey and so until they are able to travel up (end of April) we are tied to Skype, which is absolutely brilliant but not quite the real thing. I want to be able to smell Ethan before the new baby aroma fades away. If the treatment starts working to the point where I feel up to it we hope to travel down for a couple of weekdays before then… we will have to wait and see. 😎
Family ramble over. 🙂
Regards
Dai.
Hi Rob,
What's occurring, as Spock might have said if he holidayed in Barry. 😉
Regards
Dai.
Hi Maureen,
Many of us have had periods where our mobility has been restrained for one reason or another and it is a frustrating state to be in. For me it was an 6 to 10 weeks period following my DVT's… one (left leg) in the Summer of 2011 and the other (right leg) in the Autumn of 2012. 😛
I do hope that Ian regains full mobility sooner rather than later… any improvement will be a fillip to him and will encourage him to persevere… so I hope that some improvement occurs soon. 😎
Like Slim my mobility these days is governed by bone damage… I am fine over short distances but tend to seize up if I get ambitious… I have rearranged my ambitions as I go along. 😀
Regards
Dai.
Excellent, informative, relevant and valuable post… thank you very, very much. 🙂
Regards
Dai.
Hi Ann & Pete,
4.6million is excellent, especially given the struggle first time around.8-)
Ar they going to put them all back or are they going to freeze a couple of million for a second SCT? I'd go for the split because you have them in the bag and there are no guarantees that they will get enough at a second harvest… but it's your choice. 😐
Good luck for a reasonably easy ride through the SCT.:-)
Dai.
Hi All,
I know these spam posts are a nuisance.but all we need to do is to go into a subject heading and bump up the previous message… Just write 'bump' and post.
A couple of bumps each from the first few on board and we will have our board back and it will look more welcoming as well.
Just an idea.
Dai.
Hi Tom,
I have been a lifelong trade unionist… like my father before me. My Dad was 'Father Of The Chapel'… a leader of the print union the NGA. I was a Youth Delegate, Area Delegate, Branch Secretary and Area Executive Officer for the NUM… Chairperson then President of NATFHE (Further Education Union) and then Regional Officer for the East Of England (from Watford to Grimsby & Hull, East Anglia, Sheffield, Rotherham, Doncaster and of course Scunthorpe) for the Musicians' Union… 17 Branches with their own Branch Secretaries that I oversaw and managed.
I have got to say that most management officials hid behind their head office… but occasionally there were exceptions… like your management. I think that they have been wonderful with you and to you and they obviously think very highly of you to set you up as they have. 😎
Well done them… and well done you. 🙂 😎 😀
Dai.
Hi Tebebe,
As CDT was my first/Frontline treatment I didn't know what to expect by way of side-effects. It wasn't pleasant with almost exactly the same effects as you describe… but neither was it overwhelming or crippling. I persevered because I knew I had no choice and there was a very good chance that it was doing me some good. It was. I started treatment with my light chains (Bence Jones Myeloma… governed by Kappa Light Chains rather than PPs) at 8,500… by the end of Cycle 1 it was down to 3,500 by the end of Cycle 2 it was 250… I was in complete and full remission, with no visible or invisible sign of Myeloma by the end of Cycle 4 and treatment was stopped. That was in October 2009… I had the unfortunate incident of an infected Hickman Line that caused me to miss out on my Stem Cell Harvest so we started again after Xmas and I eventually had my SCT in early March, in and out in 14 days. When I started my SCT I was still in complete remission… almost 5 months since reaching that point. I had wanted to run with the CDT until it showed signs of waning but my consultant said it was a 'no brainer' to go for the SCT straight away… I wasn't so sure, I did not want to waste a single day of extended remission from the CDT… I still cannot understand why that was not considered an option, especially since my SCT only lasted 10 months but there you go… in hindsight I should have pressed for what I wanted but I didn't know then what I know now. 😉
So hold on and hold out… when you start seeing the results of your treatment the side-effects will fade into the background… I had a mantra 'Whatever It Takes'… and that has stood me in good stead, keeping me centred and positive from those early days until now. 😎
Good luck and best regards 🙂
Dai.
Well done you Joe,
I remember your posts from last year and I remember how positive you were then. 🙂
I wish you the best of luck in your endeavours and you and I both know that your Dad will be whispering encouragement every step of every race. 😎
Regards
Dai.
Hi Pat and Jean,
Yes we are both overjoyed although Ross is the product of myself and my first wife, Shelley. Fortunately we have always had a good relationship since our divorce back in 1997 and more recently, since my diagnosis in 2008 we have become friends again… Shelley is very supportive and she and Janet and Shelley's 80 year old Mum are very relaxed and chatty whenever we meet up at Becky's or at our children's events and celebrations. 😎
We are in rural Nottinghamshire and Ross is in Kent… so I won't travel down until the Christening now, although I know that Ross, Kelly Owen (2.1/2) and Ethan are planning to visit early April… until then we will have to do with Skype and Facebook for photo's etc. 😛
Ross is a prison officer on the Isle of Sheppey and Kelly teaches at another prison on the Island… The day of Ethan's birth, 31st January, was to be her last day at work before maternity leave. She was due to be induced on February the 13th… Shelley was due to travel down for a 3 week stay (mainly to look after Owen and generally take the strain off Kelly… but everybody's plans were thrown awry by Ethan deciding that enough was enough. 😀 Shelley was there by 11am next day… Becky drove down with her and is coming home alone tomorrow.
Ethan James Crowther was born at 9.46 weighing in at 7lbs 12 Ozs and started his first breast feed an hour later. Kelly panicked when she saw his eyes fluttering and that his lips had turned blue… Ross went out and shouted for the nurses who rushed in and rushed back out carrying Ethan away with them, He was put in an incubator and was fed oxygen… but he was back with his Mum within the half hour with the nurses showing little to no concern. They said it was a fairly common event with first feeds… he was so greedy suckling with his face pressing into his Mum's breast that he forgot to breathe.:-0 He was a bit fragile for a few hourd but was back to normal by mid-afternoon. Kelly and especially Ross, were frightened of Ethan going back on the breast but the nurses said that is was highly unlikely to happen again, now that they both knew what to look out for. Apparently Ross watches every second of every feed and quite often dives in and pulls ethan back a bit… I wonder how long Kelly will put up with that. 😀
All the best to all us new Grandparents. BTW, we are known as Mamgu (Mamgee – soft G as in Geese) and Tadcu (Tadkey) by our Grandchildren. 😎
Dai.
Hi Vanessa,
I completely understand that you are mad and sad by turn and that you want Stewart to have the very best chance of a successful SCT. His frontline treatment was CDT, a tried and trusted treatment and it has got him into the safety zone… PP's @ 14 is doable although I fully appreciate that 10, 7, 3 or 0 would make you happier. As others have testified their PP's continued to fall without the aid of treatment or indeed maintenance drugs… some slowly and stopping at a low plateau and others to full remission.:-)
The stage is set for Stewart now, he is young, reasonably fit and will handle the rigours of the SCT better than most. It won't be a breeze but he will cope and recover perhaps quicker than most. His PP's will be measured for the first few months and I for one will be surprised if his PP's don't reach full remission within the first 6 months or so. 😎
The only resin for further treatment now will be if Stewarts PP's start rising before his SCT… and even then the medics first answer will be to bring the SCT forward as soon as they can, although their is no reason to suppose that that will happen… I had CDT as well and I reached full remission. For various reasons… an infected Hickman line that had to be replaced which caused me to miss my harvest, followed by Christmas and starting the harvest cycle again etc., meant that my initial plan for a pre-Christmas SCT was postponed until the first week in March. My Light Chain remission didn't huge an iota… I was still clear after nearly 5 months and was still clear after the SCT. I wasn't randomised for maintenance treatment and my consultants prognosis of 3 to 5 years (based on the rapid success of full remission after only 3 months of CDT) proved to be a tad optimistic as I relapsed after only 10 months… which only goes to prove that MM is a very individual disease. :-0
Unfortunately, although the disease is different from individual to individual the treatment programme is the same for everyone… based on financial rules for progression by NICE, the clinical and financial body that determines the levels and order of treatments for MM. So unless you can afford to move to the states and find a specialist MM hospital to take Stewart on you are stuck with NICE's programme.
Frontline
SCT
Velcade
2nd SCT (if he has produced sufficient stem cells, otherwise Velcade is given as a stand alone treatment).
Revlimid
Whatever is available (depending on Myeloma levels, bone damage etc.,) .Bendamustine, Pomalidomide… both through applied for funding… or, if you are lucky, a trial for a new drug but these trials are getting far less common than a couple of years ago.
Of course, by the time Stewart relapses from his 1st SCT the world of MM will have moved on apace and the above model might be completely reordered or at least extended by several new treatments. Our American cousins are bullish about MM being downgraded from a terminal to a chronic disease (by the median survival rate being at least 10 years. They say that survival rates of 15 to 20 years is not that far away either… but the terminal to chronic downgrade is imminent (3 to 5 years tops… so the future is looking good (relatively good that is)… not for me and some others on this board but for people entering SCT's at this time, with a post SCT to relapse of 3 to 5 years can feel much more confident of falling into the longer survival category.8-)
Carfilzomib was licensed in June/July 2012 in the states under the name of KYPROLIS. At some time, however much Europe and the UK drag their feet, Kyprolis will be licensed here. It has had excellent trials and will become available either as a frontline treatment or as a treatment combined with Revlimid and Dex or suchlike, further down the road. The last treatment to be fully licensed in the UK was Revlimid, in 2006. Although Bendamustine has been around for years and Pomalidomide for the last couple of years, neither has ever been granted licensed status and your hospital has to apply for funding in able to secure their use for treatment.
But treatments in the USofA are far more flexible and suited to the individual, with many hospitals doing away with SCT's altogether, preferring novel agents and tried and trusted treatments (many at a much lower levels than we get) and their survival rates tend to be much longer than ours. Our medics are hidebound by NICE and now a government that is decimating medical services in the UK that have a direct or indirect effect on our treatment. But eventually we will catch up (by only being a year or so behind America) and their treatments and their methodologies will force the hands of Governments and, in our case in the UK – NICE into following their lead.:-D
So while this bloody awful disease is not what any of us would wish for, the relatively short-term future is looking much better than it does right now… so good luck to Stewart and his SCT and I wish him a long and healthy remission and the better choice of treatments available to him after his SCT's.8-)
Ramble over…:-) regards
Dai.
