Hi Sue,
It's 1:30am and I came on board for no reason and every reason. Sometimes I just want to stay away and concentrate on my own condition and my own problems… I have enough to be going on with that's for sure.
But then again I also realise that I have made my commitment to this board, in good times and bad, to share, support, ask for help and offer help where and when I can.:-|
You and Michael have been on and to the forefront of my mind for the past few days. I was in for the day to receive 2 units of blood on Tuesday… 2 units to 'buck me up'… my saying because although my HGB had dropped to 8.6 they don't normally offer blood until I drop under 8.0. It was a totally unexpected 'gift' from my consultant on Monday and I gratefully accepted the boost.8-)
There were only 3 of us in for blood… the schedule had 6 down for treatment but for one reason or another 5 had dropped out… leaving 2 members of the Haematology team of nurses for the 3 of us.
I sat down on the chair at 10:00am and got up out of it at 3:15pm… Janet saw me comfortable and then went shopping… specifically to a Husqvarna shop we had spotted in Nottingham. A sewing machine shop fills her with the same frisson that I get from a music shop, so I knew she would be happy for a few hours.:-D The other two 'customers' slept for most of the time and although I did doze for 30 minutes mostly I just read from the Kindle on Janet's iPad or just let my thoughts roam.:-|
And my mind turned to you and Michael… the latest in a line of cyber friends to have reached this 'waiting' juncture. Some of us succumb to infections… others to palliative care at the end of the line with no more effective treatments. I became painfully aware of your condition… of your state of mind as you wait… and then I thought of Michael and his condition and his state of mind.
So there I was… Janet out shopping, me receiving a boost of blood… and both of us would return home at the end of the day for supper and TV and whatever the tomorrow brings. My light chains continue to rise and I live in hope of the Rev & Dex managing to bring them down now that they seem to have brought my C: Diff under control… I live in hope but I truly don't know if it will work… If not it will be the end of Rev & Dex with nothing currently available to replace them. Either way I know that I am on the road home… and I will either succumb to infection or be introduced to palliative care at the end of the line.:-|
For now I can think about my novel… write a few songs, play guitar and push MM to the corner of my mind… while Janet can wait for her new Husqvarna parts to be delivered, carry on quilting and enjoy her mastery of the iPad.:-)
We can wait… for a little leeway of hope for newly licensed treatments… and we can wait for a whole jumble of small 'this and thats'… but for now… for now we don't have to wait for the end.:-|
Our thoughts are with you and with Michael… I urge your Guardian Angels to be with you and to stay with you for as long as you need them.
With loving regards:-)
Dai & Janet.
Hi Keith,
Only 20 minutes and 3 attempts by the same person to get my cannula in and then it went in easily and stayed in with no problems… so just a 5 hour day for me. The No. of beds/chairs taken up for transfusions has had its effect on the Day Case Unit and so they have shipped transfusions up to a large side-room off the Burns Unit, staffed by 2 nurse members of the Haematology team… no Doctors and up to 8 patients maximum. This was my third visit this year and the maximum has been 4 patients, so there has been a good level of care, leaving the Day Case Unit freed up for other things.8-)
I have had the C: Diff for 4.5 months… end of June to present day with another 2 weeks of current treatment on Vancomycin… we will see from there. I do know that if the C: Diff had not raised its head I would have had a lovely illness free summer… and from that I take it that the Rev would have responded differently… with better absorption and hopefully better light chain results. For one of my consultants to say that this cycle should prove whether or not there has been any correlation between the Rev and the C: Diff is a bit silly when I will not finish the course of Vancomycin until the same time as my current Rev rest week… as far as I am concerned I need a month where I am not on any C: Diff treatment at all before they can start looking at correlations… I am utterly convinced that there is a correlation and that Rev has not had a proper chance to absorb and do its job properly.:-0
As far as no more treatments go, my other consultant (October's meeting) said that currently there are no treatments available… period. Nothing licensed , nothing on trial, nothing in the pipeline… so it's either Rev & Dex or a previously used treatment… end of… she really was that succinct (and, as I heard it, very frustrated too). 😐
So I'm hoping for at least one more Cycle of Rev & Dex to carry me through to the new year and then positive news of a downward spiral in my light chains (even if it's only 0.05). 😎
We need NICE and its satellite bodies to get some licensing done in the near future… but that that costs money… :-S
Hey Ho!.
Dai.
Excellent news Mavis… and I hope that your remission is both long and successful… but make sure you help it along by lving as healthy a life as possible.:-D
The best of luck andplease stay in touch.8-)
Dai.
Hi Keith,
I was in for a consult today… my Light Chains are at 435… up from 325 in September… creeping up but nothing drastic as yet and anyway, I am told there is nothing else for me at the moment…no trials, no novel agents (such as Bendamustine etc.,) so it's Rev & Dex or nothing.:-/
The Vancomycin treatment for my C:Diff seems to be working… and the order of the day seems to be to let that treatment finish (2 more weeks) and see if the the C:Diff has been causing problems re: absorption with the Revlimid. My consultant said she was willing to let this cycle through but I think it needs one more after this to give the Vancomycin a real chance. If the Light Chains remain up, or move further up, then it will show that the C:Diff has not been causing the problems… I think it has but we will wait and see.;-)
Oh, and I am also in for two units of blood tomorrow as well… 😀
Dai.
Hi Sue,
I am so sorry that Michael has reached the end of effective treatments. It is pointless saying that he had a good run because regardless of the timescale he has now reached the end of his fight against MM.
It seems that by recommending your local hospital for palliative care your consultant has confirmed that Haematology can offer no more… Several good friends have been through this forum and chose between home care, with a Macmillan nurse in support or a local Hospice. Both will ensure that Michael will be made as comfortable as possible and most importantly, pain free.
I am on Rev And Dex at the moment, so I am on the road home too… Although I am hoping for a year or two yet. Janet and I have spoken about our options and for the moment home is our choice (as much as the freedom allowed to family and friends to come and go as we please). I hope that in comfortable and pain free surroundings you will be afforded sufficient time and space to make peace and say your goodbyes as you wish… Although I know that however long you get it will never be enough.
With loving regards
Dai.
Just a 'Best Wishes' for as smooth a SCT as is possible and to reiterate Davids advice about post recovery.:-D
It's taken a long time to get here… now see it through and enjoy the results.8-)
Dai.
Hi Sarah,
I assume its your GP that you have been seeing… if so you need yo get Henry to your Haematology team. They will be far more knowledgeable about how MM and chest infections go together… even if it means going in far a far more powerful anti-biotic through an IV drip. 😎
The longer this goes on without the proper treatment, the harder it will be to treat.:-(
Regards and best wishes.
Dai.
December 21st? Well… knowing you it won't ruin your Christmas.
If the PP's have decided to rise above the accepted parameters I imagine your consultant will put you on a 'watch and wait' brief for four weeks anyway but if your instincts are right about the muscle via bone pain in your side then what a wonderful Christmas present a 'Celebrate & Saunter On' declaration will be. 😎
I have had one major infection this year, a lung infection back in May… which left me with another in the recurring shape of ''C – Difficule' which, thanks to my second DVT in 2 years (right leg, giving me a matching pair) had me hospitalised for both problems and after assessment put me in the very capable hands of the QMC's Intestinal ward. 😀
They seem to have got the plot and I am now on a 7 week course of extra strong mints (Or Vancomycin as they call it)… a course that starts off with 4 a day, goes on to 3, 3, 1 – 1 every other day, 1 every 3rd day and finish. I am currently on 1 every day and feeling good – much better than before, with no side-effects to note… so far, so very, very good. The DVT has been a high price to pay but the way that 'C-Diff' was dominating my life it is a price worth paying if they either clear the problem or get it firmly under control. 😀 😎
I have been on Revlimid & Dex since the middle of March and I can honestly say that I have had no problems with MM… my Light Chains have risen but not out of the ball park as yet… the rise has been due to Rev;s inability to properly absorb into the my system due to the recurring 'C-Diff' infection… hopefully the Rev will have a better chance to absorb over the next few months with the 'C-Diff' under control and I too will have a Christmas of celebration and not desolation. 🙂
I wish you well with your PP's David… and your other little local problem… either way I am sure that:
[quote]you can meet with Triumph and Disaster
And treat those two impostors just the same[/quote]
Regards 😉
Dai.
As far as I understand it the medics look at the ratios for overall guidance and if the PPs or Kappa Light Chains are acceptable they will press ahead with the SCT process . 🙂
There are parameters of which 0, Nil, Zilch, Zero, nothing… are the ultimate base camp aim…. with an upward level which has been set as the acceptable level of the parameter. I.e. they may say that they are looking for 0 but will accept any level between 13 and 0 for the next treatment to commence. I imagine that the parameter settings are dependant on the person, their particular history and expectations. 😀 😎
Again, from what I can ascertain, the starting blocks numbers of readings and ratios have no bearing on either the success of the SCT or the length of the remission…. 😎 🙂
Whatever.. you have qualified… Enjoy :-S 😛 :-0 – 😀 😎 🙂
Dai.
Hi Eve,
In a previous lifetime, while doing my stint as a full-time union official for the NUM, I was put in touch with a TV producer who 'collected' people who could provide resources in the way of interesting human beings for TV programmes. I considered myself 'interesting' (especially when the daily rate plus expenses for travel and sustenance was the equivalent of a weeks wage) so while I provided people I always included myself which was not a problem for my producer friend. (about six programmes, plus a feature film, over a three year period.) 😎
One show was Sarah Kennedy's 'Today', on which I appeared four times in two years and one programme in particular was on the subject of stress. There was an audience of approx: 100 plus a few celebrities… on this show they included Ernie Wise, the actor Alfred Marx and Andre Previn. The idea was to determine what occupations raised the most stress and there was a bank of experts to explain the different kinds of stress, with the exposition of the top three 'stressed' jobs.:-|
According to the top expert…Third was deep sea divers, second was soldiers on active duty and first was coalminers. This stunned the A&E Doctors and Nurses, the surgeons, firemen, police and paramedics etc., who had argued their case volubly and clearly.:-0
The expert said that stress was only dangerous if you internalised it. That is, doctors, nurses etc., etc., reacted to stress by doing something about it… whereas the divers, soldiers and miners worked in conditions where they outwardly suppressed danger but internally their senses were ever sharpened by the elements around them over which they had no control.:-P
Carers of MM sufferers get extremely stressed and angry but they are not unlike the doctors and nurses in A&E inasmuch as their stress is an outward phenomenon… reacting to outward expressions of anger, confusion, helplessness etc., whereas the MM sufferers themselves have little or no control over their disease and the further they travel down the treatments route the more often they are exposed to surges of internalised stress. :-/
This is evident in the attendance at consultations, where every four weeks they have to wait to find out if their treatment has failed or not… relapse taking them one step nearer the end, success giving them four more weeks of progression. Of course the carers share this experience but they cannot truly share the internalised stress of the sufferer. While all MM sufferers are exposed to an enormous amount of stress it is those that actually reach the end of treatments with nothing else to try that get the full gamut of internalised stress. 😐
But I am convinced that stress, in whatever shape or form, can be managed. You recognise it, acknowledge it, address it and externalise it. Giving in to it or allowing it a credence and precedence it does not deserve only makes the whole process of living and dying with MM much, much harder… on yourself and those you love.:-(
Which is why I believe that there is a time and place for anger and external stress at the beginning of the whole MM experience… after that it is a self imposed misery. If you take away one set of behaviours (stress and anger) you leave room for other, far more healthier behaviours (self-determination and positive thinking). The first two are destructive, the second two are constructive… it takes work and self awareness but the sort of stress that we associate with MM can be replaced with better behaviours… and I am convinced that those that adopt such attitudes not only live longer but also cope much better with both the illness and the progressions… good and bad. (See exhibit 'A' Tom Lappin. 😎 )
Anyway… that's my (cheerful) rant… externalised and out there… and it is an excuse to have a mild rant and in no way aimed at you. 😉
Dai.
Thanks Scott…
As I see it you are leading the pack… with me and Keith treading on your heels.;-)
The problem is that Rev & Dex might settle down and give me 18 months to 2 years… perhaps more if Kyprolis (Carfilzomib) is licensed while Rev & Dex are still working… my consultant was quite bullish about the efficacy of Kyprolis working with Rev & Dex. But the treatment could relapse at any moment as well… talk about living from month to month!!!:-/
Do these Proteane Inhibitors work with Bendamustine as well? I don't know that much about Bendamustine… how are you finding it?:-|
There are several good medicines out there at the moment… it's a matter of getting them licensed and into Europe while we are still in the game… hopefully.:-| 😎
Dai.
Hi Peggy,
I suppose you have got your answers now but just a note to say that I have never heard of a harvest process that didn't include chemo-priming and GCSF injections… if I am wrong on this I would like to know what process was followed.:-|
Best of luck any which way (Look… me using an Americanisation… whatever next???):-D :-0
Dai.
Hi Eve,
Thanks for replying… 🙂 I thought I had frightened people into submission… :-0 which was not my intent. 🙁
[i][b]I am writing this through you, not necessarily for you E[/i]ve.[/b]8-)
What I had noted was that the majority of the angry, stressed and disturbed contributors were nearly all in the early stages of the MM experience. I do understand the need to let fly and rant and rave at this stage… life is not fair and why should it happen to them? To admit an inordinate amount of stress and strain at this juncture is normal and the need to externalise the call for help is both understandable and valid.:-)
But… once the frontline and SCT stages have been breached there is the potential for a good length of time before the last steps that lead to end of life and grief and the life beyond. I'm glad that you mentioned mentally mourning and grieving Slim when he was very ill… I have had myself half buried or severely scorched at times and when slim was really bad I had him ready as well.:-P
But this level of stress cannot be kept up… there is a life worth living out there that will only be diluted and even shortened if a negative, worse case scenario is adopted and upheld. The way I look at it is this:
Frontline treatment >>> the first attack on MM… an attack that includes novel agents (Thalidomide & Dex for instance) along with a bone fide chemotherapy, Cyclophosphamide is bound to produce some nasties by the way of side-effects, mostly short lived with a return to normality within weeks of finishing the treatment. After that it is all about the preparation for the Stem Cell Harvest and the Stem Cell Transplant itself… a step into the scary unknown and extremely stressful indeed. But:
The SCT could realise a remission period of 3 to 5 years or more… followed by relapse and, if there are enough Stem Cells, the possibility of a course of Velcade followed by a second SCT… which, while usually shorter than the first, could still give 18 months to 2 years further remission. 😎
Currently this is followed by Revlimid and Dex, with a current (and expanding) median of 30 months. This is before the newly licensed Proateane Inhibitors (PI's) reach us from the USA… these Inhibitors (including 'Kyprolis' (formerly Carfilzomib which many of us have followed with interest) knock back the MM, allowing Revlimid and Dex to do their job more efficiently. 'Kyprolois' is just one of quite a few new novel agents becoming available through licensing from the USA and the European licensing should follow in the next 6 to 9 months… so there is hope for us all with the extension that these drugs afford to existing drug regimes.:-D 😎 🙂
So… as a possibility if not quite yet a probability:
SCT 1 – >>> 3 years
Velcade – >> 1 year
SCT 2 – >>> 1.5 years
Rev & Dex & PI – >>> 2 to 3 years
A.N. OTHER – >>> 1 year or more
Pure conjecture of course… but most of these are proven and the new ones (with more, bigger, better new ones following behind them) give an enormous amount of hope and takes the disease into the territory where the medics can call the shots for MM to be reduced from a terminal disease to a chronic disease (10 years survival rates to qualify). The medics think we are nearly there… and I am inclined to agree… even if I am unlikely to make the first draft. 😉
The above conjecture could easily be expanded by 2 or 3 years to get the MM patient comfortably into the 10 year survival rates… and that is a long time to hold onto stress. So be positive… allow the early stages of anger and stress and the need to externalise… but please then grab the initiative, stay positive,, be strong, enjoy life and squeeze every minute of love and joy and life that you can. 🙂 😎 😀 😎 🙂
That's my 2p worth. 😉
Dai.
Hi Jean,
Keep an eye on Frank's legs, it could be down to several things and a DVT (Deep Vein Thrombosis) is one not mentioned in your posts.:-0
Last year (the summer of 2011) I had a badly swollen leg and wondered if it could possibly be a DVT. (I reported all on here and in a nutshell it turned out to be a DVT after several weeks of complaining and an eventual Doppler Ultrasound Scan on my leg.) :-/
I was down for a scan as an emergency measure but the Doctor had to be at another hospital in the afternoon and dropped me (I was strapped on to the back of one of those electric cars at the Daycase Unit waiting to go for the scan when it was called off. It took 3 weeks before the scan eventually proved the DVT… 3 weeks of care and observation with several worried nurses at the Unit giving all sorts of advice.:-P
My main symptom was that my left leg looked like an Elephant's leg, badly swollen and thrice the size of the right. I was treated with self-administered, daily Clexane injections (150ml) and eventually it returned to normal.:-(
[i][b]As of 5 weeks ago my right leg developed the same symptoms with the same result… a matching DVT[/i]. [/b]
I had followed the Clexane (blood thinner) 150ml treatment for 6 months (supposedly the maximum length of treatment) for the left leg before switching to a 40ml maintenance dose last January and had continued that treatment until this latest development. I am now back up to 150ml and will stay on this dose until mid-March and we will take it from there.:-P
If I was you I would ask about the possibility of a blood clot (DVT) and a Doppler Ultrasound Scan to confirm or deny… to not do so, given the symptoms, could have disastrous outcomes if it does turn out to be a DVT… a pulmonary embolism (clot travelling through the heart to the lungs) not the least of them.:-/
I had a Pulmonary Embolism (following extensive radiotherapy) just after my initial diagnosis of Secondary Bone Cancer, Primary Unknown 4 years ago.:-|
It was quite late… the pub had been closed for an our or so and I was doing some recording when I suddenly felt very breathless and lightheaded… It hit me hard and I collapsed unconscious on the floor while calling Janet's name on the way to our bedroom. My Ward Consultant at the time reckoned that my shouting Janet's name and trying to stay conscious could possibly have saved my life… all I know is that I collapsed 5 feet from the bedroom door where Janet found me after hearing me go down.8-)
I awoke to an assembly of Janet, my step-daughter and her partner (who lived and worked with us) and 2 para-medics… I eventually recovered enough to walk down from our living quarters to the upper restaurant of our pub (lots of narrow winding stairways) and onto a gurney. I didn't develop a DVT that time… I simply jumped straight to a Pulmonary Embolism due to a number of floating clots left after the radiotherapy treatment on my tumour and the crushed vertebrae.:-0
Anyway… that's my story… don't even allow the possibility of it being similar to Frank's… ask the questions and get him scanned. Better safe than sorry.:-S
Dai.
Hi All,
I'm still around…. popping in 2 or 3 times a day to see what's occurring. 🙂
The wedding day was as sweet as a nut… everything went absolutely fine, with excellent weather, excellent service and a truly lovely reception. I manage to walk Becky down (up?) the aisle and, after saying that I was glad to give her away, I was allowed to sit down. 😎
This was my first 'Civil' ceremony but it was beautiful… and apart from the script, no different from any other registry office wedding that I have attended. There were 70 people waiting for us and the Registrar could not not have been more helpful or accommodating if she had really tried. The 'County House' is an old country house with lovely grounds, so the whole experience was first class and in keeping with the occasion. 😎 🙂 😀
I will post some photo's as soon as I have worked out how to do it.;-)
I still post an answer here and there but at the moment most posts are related to frontline treatment and SCTs and there are more than enough people with more recent experiences than me in here at the moment… I don't exactly feel redundant but I am happy to let the next wave take the lead. 😎
Best regards 🙂
Dai.
