Hi All,
I was determined to start Cycle 6 with a positive outlook and with a healthy approach and a new regime of getting out into the fresh air and getting out generally.
Monday was good,:-) Tuesday was better… 😀 but I spent this morning monitoring my temperature because I woke with a temperature of 38.3 and a rumbling, grumbling stomach… pretty much the same as last week.:-( After last week's stomach bug I was ready for something different… Instead I have more of the same… so much for the anti-biotics.:-P
I deluged myself with water, drinking 4 litres in 2 hours, opened the window for fresh air and took my temperature hourly. After 4 readings over 38 I knew that I had to ring in.. and ringing in meant going in. :-0
So I had an away day in the Day Case Unit. They took bloods, Temp/Blood Pressure etc. and then more bloods for cultures. Quick efficient and thorough… and when everything was done I had to wait 3 hours for the doctor to become available. She was thorough and after declaring my bloods okay she allowed me paracetamol (received at 5pm) and gave me a different course of anti-biotics, with instructions to come back on Friday for a check-up and to see if the cultures came up with any answers.:-|
Today was supposed to be my DexDay tm… changed fro a Tuesday to Wednesday last week… so now it will be Thursday.:-S
Hey Ho and so much for a healthy start to Cycle 6… 😛 postponed 'til Saturday.8-) 😉 🙂
Dai.
Good luck with the radiotherapy Andy. I had extensive radiotherapy to blast away a couple of vertebrae that had crumbled onto my spinal cord… which was successful and got me walking again.8-)
A year later I had one single shot on my left shoulder which was painless and effective. I have to see an oncologist next Tuesday to consider a blast at the fracture on my left scapula… its not bothering me at the moment (healed itself?) but I'll be guided by her judgement.;-)
Here's to the Cyclophosphamide… and its quest to lower your PP's alongside Rev & Dex. I had CDT… (Thalidomide instead of Rev) for my frontline and it did the job in no time at all… so the very best of luck with it.:-)
Dai.
btw Did you get to see Prof. Jackson?
What a relief for you both Mari!
It may mean a few extra days and a bit of moving about but it will be worth it when Steve's stem cell count reaches 2m. 🙂 😎
Dai.
Hi Mari & Ali,
Plerixafor is very expensive (not sure now but I was told once and if I recall correctly more expensive than gold).:-D
The harvest machine does a series of cycles and then stops to store what it has collected… so the more days on the machine, the more bags you have. Each bag contains your collected stem cells plus a preservative… they are then ether prepared for return or frozen for later use… a lot of this work is done back in the laboratory.8-)
As far as I know I genuinely hold the world's record for the amount of bags returned. Due to my 5 full days on the machine, plus the plerixafor, my collection of 2.1 million stem cells were returned to me via 14 bags. I was told that the previous record for Nottingham up to that point was 8 bags, which one nursing sister told me was a record they thought would never be beaten… then I came along.;-) 😀
Tell Stephen to gird his loins (is that the same as hitching up your trousers?) and take the 3 days… whatever it takes… it will be worth it.:-)
Dai.
Much joy Liz & Kev,
I have a fifteen year old Grandson and I love him very much but I did not see as much of him growing up as I would have wished due to distances involved, although now we are only 20 or so miles away and we have grown much closer.:-)
But our other two (6 & 4) are almost on our doorstep and we can see them as often as we like. We can virtually see them grow and we can share or hear about, with graphic description, every lost tooth, every adventure, knocked knee and every new experience.:-)
I love seeing them and my time with them is now… and now will do nicely.8-)
Dai.
Hi Mari,
My initial harvest was cancelled when my Hickman Line leaked, giving me an infection, a week of being neutropenic and finally a replacement line… by which time all of the prep for my harvest, including my CSF injections and the chemoblast were null and void because I had 'missed the window'.
That was 3 weeks before Xmas… so they waited until after the holiday and started again (thankfully no more chemo) but there were a few delays on their(the hospital) part due to harvest machine availability, so it was mid-February before my harvest.
Day one was very disappointing… so they gave me an extra double-dose of GCSF but the next day proved almost as disappointing… so the Prof ordered up a dose of Plerixafor, which I came back to the hospital a 11pm to receive. Wednesday was a little better but still poor (about 400,000 in total so the Prof ordered another dose of Plerixafor for Wednesday night).
After 5 days on the harvester, + 2 doses of Plerixafor, I finally managed to squeeze out 2.1 million Stem Cells… enough for a single SCT (the Prof said he would have run with 1.8m). So don't despair yet.
The Plerixafor worked for me… encouraging all my Stem Cells to stop sticking to the sides and to throw themselves into the mainstream.
I hope that this powerfully expensive but powerfully good agent works for Steve as it did for me.
Dai.
Hi Keith,
I am glad that your news is relatively good… and that your team seem to be sorting out your Dex intake.
I asked my consultant today about my Dex intake (20x2mg once weekly) and she said she would like to keep it at that for the present until we see some definite movement downwards with my light chains. That agreed I mentioned that someone from this site was on a significantly higher intake and she physically flinched… 😀 25mg Rev per day + 40mg Dex per week seems to be her idea of 'Maximum'.:-D
I hope that Cycle 2 is better, easier and far more comfortable for you… personally it took about 4 Cycles before I felt comfortable/at ease with my regime (although it hasn't changed since Cycle 1).:-)
Regards
Dai.
I can only wish you the best of luck Tom… I am sure you have exactly the sort of personality they want on the show… it would be great to see you… and even better if you won some big money.8-)
Will Elaine be on the front row to guide you I wonder.:-) 😀
Dai.
Glad to see that while you are going through the normal low points that they are running smoothly. Twelve days in? That's gone quick. In which case I'm predicting 0.1 for Tuesday am. Either way you must be getting near and then it will be home for recovery.
Keep up the good work, rather than going through the mill you have had the run of the mill and that can't be bad. 😎
Regards and best wishes 🙂
Dai.
Good work Keith… At least you know the plan and it does seem to be having a good effect.
I have my consult next Monday too… all I want is the okay to carry on – to Cycle 6. my ought chain reading should be back but I am not too concerned… I don't suppose it will have dropped too much but my body tells me that it hasn't't risen much if anything at all because know that my infection seems to have abated my body feels quite good.
Here's hoping that you pp's continue to drop… Hopefully to 0 but al least to a plateau that can be maintained for a long, long time.8-)
Dai.
The trouble is that while throwing large doses of Dex at the cancer can have magic results, it is a high risk strategy regarding side-effects.
The worst side-effect of Dex is not the range of beauties that we can see and feel but the silent one… the one that allows, protects and disguises infections. Infections appear, develop and grow because Dex encourages their existence, feeds them and then disguises their effects until they have taken full hold, making the treatment of them far harder that that of ordinary infections which can be recognised, monitored and treated relatively early.
So it is of utter importance that we are taking the right dose at the right time of our treatment… especially if we are prone to infections. Of course it is a problem for people like myself and Keith who have taken Dex many times before reaching this stage… and any pre-existing proneness to infection has most likely been as a direct result of our exposure to so much Dex… it's a vicious circle… and one that we need to break or at least one that everybody is aware of, with the situation closely monitored.
Dex is my friend… but preferably a friend in small doses.;-)
Dai.
Okay, I'll be your Huckleberry.:-D
One of my all time favourites.
Dai.
The Mother Superior was waiting at the nearest railway station for her newest novice to arrive from London. The convent car was an ancient Ford with a large rounded bonnet but it looked good and worked fine and she had thoroughly enjoyed the twelve mile scenic drive down from the Derbyshire hills.
At last the train pulled in and only one passenger alighted. The slim, pretty faced novice was dressed in her white robes but the Mother Superior had to suppress a smile at the sight of the largest personal crucifix she had ever seen dangling the length and breadth of the Novice's torso. It was made of mahogany with a large silver relief of Jesus being roughly twice the size of a Barbie doll.
They made their introductions and climbed into the car. It was dusk and by the time they reached the wooded foothills, five miles from the convent it was pitch black, with the ancient headlights giving minimum relief, so the Mother Superior slowed down to a steady twenty miles an an hour.
The novice, a fishmonger's daughter, had a strong East-end accent but she had answered the Mother Superiors last question about favourite hymns by singing her three favourites in a soft but beautiful contralto voice. The Mother Superior felt blessed.
Suddenly something landed very hard on top of the bonnet… at first the Mother Superior thought she had hit a deer but then she realised that in fact it was a man… a man like no other.
He wore a large dark cloak that he had wrapped up around his face. He pulled away the cloak to reveal a pair of blood red eyes and then he opened his mouth wide to reveal large pointed teeth with overgrown incisors and a large blood-red tongue.
At first the Mother Superior had jumped on the brakes… but her survival instincts kicked in and she revved up the old engine and the car shot forward up the hill until she reached fifty miles an hour… hurtling dangerously around corners with little help from the headlights, trying furiously to shake the Vampire off… to no avail. He stuck like a limpet and spread his cloak to block her view of the road.
Then the Mother Superior was inspired. She turned to the Novice, who was grimacing at the Vampire but showing no sign of fear.
'Show him your cross' she shouted at the Novice. 'Show him your Cross!' The Novice nodded in reply, pulled up her sleeves, wound down her window fully, leant right out of the window until her face was no more than two feet away from the Vampires face and screamed:
'Hey you, Vlad The Impaler… Get off the f….ing Bonnet!'
Hi Jen,
Re: Can he continue with the treatment the answer is yes, yes, yes. As long as it is not too unbearably painful or causes the inability to use his hands then they can reduce the dose which should ease the symptoms… but don't discontinue lightly. 🙁
Your Dad will need Velcade later on down the road and if he has abandoned it at this stage they might not offer it as an option… and we need every option we can get, Without it, it could reduce your Dad's life span by 9 to18 months or even more. I had an unpleasant time on Velcade (easier now they administer it subcutaneously) and I reached full remission… but it came back within a couple of months… but it still gave me 12 months (including the wait for my next treatment) of which I am very grateful to have received.:-)
Dai.
Hi Keith,
I've been on 40mg once a week from the start… the same dose as on CDT & Velcade. 🙂
I have a DexDay TM on Tuesdays, where I basically veg out with a book, Kindle, iPad and TV… with several changes of tops due to the excessive sweating (though I have to report that the ever observant Janet has noted that Cycle 4 had four changes and Cycle 5 only 3… so perhaps I am finding a balance). But stlll, going out on the DexDay is not really on. 😐
My GP was astounded that I was taking such a high dose at one go and suggested I talked to my consultant about spreading he dose… so if you are taking a higher dose that 40mg something seems seriously amiss IMHO.:-(
Just re-read your post… You are taking 420mg per Cycle… I am taking 160mg per Cycle… if I had to take an extra 260mg per Cycle I'd be half dead. Ring in tomorrow and get it checked out Keith… I can't see that being right in any way, shape or form my friend.>:-(
Dai.
Hi Helen,
I typed hi ho into the search myeloma uk box and I found all the replies but they appear individually with no clue to where they are collected. sorry.
Dai.
