Ummm…
I had the alarm set for 7am to ensure we were up and at the Day Case by 8.30am.
I fell asleep approx: 10.30pm. I woke at 1.15am with really bad stomach gripes. I tried to ease the pain by stretching and eventually the pain subsided but left me with the usual sore tummy. I stayed awake until 6am ish.:-(
Here's the Ummm bit. My temperature started to creep up yesterday evening so I took 2 paracetamol at 6pm. I took my temp during my 'gripes' but it was normal… and it has stayed normal ever since. The alarm went off at 7am but I had a dilemma.:-|
My stomach pains had disappeared… even my sore tum had almost disappeared. I had breakfast to force the issue but everything remained normal.8-)
So here I am at 3pm… feeling fine, no gripes, no temperature… nothing to report. So it's wait and see… I can't go into the Day Case with no symptoms… and this is the best I have felt for 2 weeks.:-D
Go, as our American friends might say, figure.:-)
Dai.
Thank you Tom & Gina, much appreciated.:-)
Not to worry Gina… this is common and garden side effects… more a result of my medication than MM so while I am complaining I'm still on my treatment. This time something seems to have taken up residence in my gut and needs a specific anti-biotic to clear it up. 😎
I am sure the medics will find it but in the meantime I am in the grip of a little bug that is dominating my summer… no bug and I would be having a great time. 😉
Take care.
Dai.
Hi Chris,
I'm spitting feathers. This is an obvious example of the postcode lottery at work right here.
To get to 7 is good… it means you need a boost and Pleriaxafor may well have done the trick… it did for me and several others here but there was no-one with enough political or financial clout to make the decision to give it to you.
This is your future well being they are playing with here. Okay, they might decide to double/treble your GCSF injections and that may well work… or they might make the decision to boost the GCSF followed by Pleriaxafor as an emergency measure… but that will be [i][b]after[/i][/b] the 'committee' has met… and you needed the Pleriaxafor today.
I[i][b]t is politics… it is financial restraints… applied to you because of where you live… they didn't apply to me and they don't apply to others[/i][/b].
It is plain wrong… and for me it should be one of the prime objectives of MUK… to ensure that all treatments are available to all patients… pure and simple, no argument, no discussion.
Dai.
Thanks for listening to my gripes and responding David & Jo.:-D
This current Boomerang/Yo-Yo complaint started at the end of June and is still here… we worked it out that of the pat 36 days I have had 8 days that I could call my own… free from gripes and associated grumbles… it's wearing, that's all.:-/
You may well be right Jo… the Doctor at the Day Case mentioned this as a possibility the last time I was in.. but I was unable to produce a sample before home time. (I would have been fine 20 minutes earlier but there you go).
We have Alfie all day today so I have taken 2 paracetamol when my temp was 37.3… but if it starts climbing again we will not bother ringing in we will just turn up bright and early at the day Case tomorrow AM and ask for it to be sorted.8-)
I mean… the Olympics are on and I'm missing some good stuff while visiting the White Bowl Stadium!!!;-)
I realise that there are people in a far worse state than me… but I just wanted it off my chest.
That's all.:-)
Dai.
Hi Eve,
Two months already… it may seem slow to you but I think time is flying.
Slim's whole system has had a reboot and kickstart and he is bound to develop aches and pains… some old, some new but there will be other changes as well. My hair (what I have left) went back to the tight curls of my youth and twenties… I was having problems with my eyesight and found that my eyesight had improved to a point nine years ago!!! 😀
I am sure that Slim's platelets will soon start moving up and he will start to look and more importantly feel, much better and more like his own self. It works at different paces for different people but it took me about nine to ten months before I could say that I was fully comfortable with my 'new' self.8-)
Enjoy your holiday… book it and go.:-)
Dai.
Hi Chris,
I hope all has gone well with a bumper crop to be getting on with. The setting of dates will follow so good luck and keep in touch.
Dai.
Hi Jean & Frank,
Congratulations to you for the forthcoming event. I have never been close for the actual birth of any of our grandchildren, although Janet has been there for two of the four having moved in with a week or so to go. We too are celebrating the same good news with my daughter-in-law and son expecting their second in February. They live in Kent… so no doubt it will be Skype and a dash down after the birth.;-)
Enjoy the proximity and all that goes with it.:-D
Regards
Dai.
Hi Charlie,
Welcome to the forum but I wish you were not here.
This is a confusing time… and frightening, with no option but to climb on board the treatment wagon and move forward to a better place.:-)
Yes, there is a better place but you have to be treated to get there. This is an excellent forum with people way ahead of you, just in front of you and regretfully just behind you too.:-|
We are always here to answer queries, offer experiential advice and sometimes… well, quite often actually, offer an ear when you just want to rant or rave. We have all been there and it can be quite cathartic and therapeutic.8-)
Regards
Dai.
Hi Kevin,
CDT worked very well for me bringing my light chains from 3,500 to 0 in 3 Cycles… I completed the 4th to make sure and then had my SCT 4 months later.
I have regretted that decision ever since as I was still in full remission with excellent BMB results when I started my SCT. I wanted to wait until the first sings of upward movement before starting the SCT process but my then consultant was quite bullish about the SCT saying it was a 'No Brainer' as far as she was concerned. 😛
This attitude convinced my wife who was frightened that I might compromise my chances if I insisted on staying with my CDT remission. Knowing what I know now I wish that I had insisted… but although it was my choice it didn't seem it at the time.:-(
I hope you get your CDT and run with it if it gets you to a decent plateau… or preferably full remission.8-)
Regards
Dai.
Hi Tina,
Plateau reached, SCT to bring it home and remission served… hopefully a very long and healthy remission at that.:-)
Enjoy your break and relax as much as you can.8-)
Regards
Dai.
Hi Paul,
Like many here I believe that your age, general fitness and most importantly your positivity will help you through the process with room to touch the sides.8-)
4.2 means enough in cold storage for SCT 2 at a later date…. is this what they have planned?
The very best of good fortune and try to stay in touch if you are able.:-)
Best regards
Dai.
Hi Dee,
Thankfully I have never suffered with kidney problems, although my Myeloma, the Bence Jones (light chain) Myeloma, is supposed to be 'high risk' for kidney problems.:-(
In a nutshell there are two main kinds of Myeloma:
Heavy Chain: Measured by the amount of Paraproteins in the blood.
Light Chain: Measured by the amount of Kappa Light Chains in the blood.
Your Dad should have been told which type he is. (Light Chain is rarer).
I imagine that getting your Dad's kidneys functioning correctly will be the first priority.
Who attends the consultations with your Dad? They should be able to ask questions and take notes… your Dad will no doubt be slightly overwhelmed at this stage and will not be up to taking notes.
There are some excellent guide booklets available on this site… hard copy or downloads… which cover all the basics and quite a few of the advanced topics. If you want a chat with a professional you can ring Ellen or one of her staff… they are used to dealing with people who are new and confused… we have all been there believe me.:-|
Welcome to the forum, I wish that you hadn't needed to be here… but as you are, welcome and I hopw that we can help you with specifics as you go along.:-)
Dai.
PS. I believe Jo (Badger) a regular here had/has kidney problems… perhaps she will pop in soon and offer some advice.
Hi Scott,
I am on Cycle 6 and my light chains have yet to settle which is a bit disconcerting but while they are yo-yoing up and down they seem to be staying within the same parameters as the beginning… so my consultant 'is not panicking'. I asked her about my Dex dosage and she said she won't consider a reduction until my light chains come down and stay down. 🙂 My readings so far (approximately):
Start: 300 – 225 – 128 – 212 – 175 – 125 – 210
So much of a muchness… but I am hoping to get them to 50 or under for the long term… the next reading might tell us something… as long as its not upwards I don't mind so much.;-)
So by comparison yours don't look so bad.:-)
Dai.
Hi Tina,
I have had quite a few dizziness attacks over the past four years, similar to your experience after a sudden move or burst of energy. I can't directly recall if they occurred after coming off treatment but they tended to be a series of 'one offs' rather than a continuous bout.
I have always blamed my medication but if your attacks continue I would go to your GP for a check up, just in case.
Dai.
Hi Amelie,
I subscribe to the newsletter for the information regarding new drugs and treatments but I have not tried to engage with their members board because we are always a year to eighteen months behind and so there is no dialogue that we can share on an equal basis. 🙁
The most interesting concept to come from the USA is there belief that less is more. Quite a few highly rated centres of Myeloma expertise are promoting lower doses of treatment and there is a move away from the SCT as the major goal of a MM patient. It is these sort of processes and procedures that attract my attention… that and the new drug regimes coming on board. 🙂
Dai.
