Thanks Phil,
Yes, I have to back in two weeks for blood tests to watch my white cell count and my neutrofils. My specialist nurse will check the results and recommend any alterations… obviously I am hoping to stay on the highest dose possible if I can.
What else to you take with the Rev? Is the trial your frontline treatment or further down the line?
Regards
Dai.:-)
Hi all,
Thank you very much for your supportive replies.:-)
I have to take the Revlimid tablets one per night for three weeks, folowed by a rest week… then repeat, hopefully for many, many cycles.
The dex (20 tablet, once per week continuously – they only seem to do one size) I took yesterday morning making Tuesdays 'dexdays'.:-S
Imagine it will take a good while to suss out what the side effects of the Revlimid will be, fatigue seems to be the most reported, but the dex held no surprises, being my third time in its company.;-)
I took my first Rev on Monday evening, followed by the dex next morning and so far dex is winning. Yes I feel fatigued but that has been the norm for a while during this relapse. The dex managed to wake me after a coupe of hours sleep and kept me awake for a couple of hours until I gave Janet a nudge and I did a complete change of nightwear with a double towel placed on my sheet, my jimjams felt as if they had just come out of the washing machine.:-P
The sweats, coupled with a feeling of something coursing through my body, plus sleeplessness seems to be my norm with dex… luckily for me it has never really shown itself as dexitude… so watch this space.
I hope I can take to the Rev… my consultant says that most that do settle down into a comfortable relationship with the drug after the first 3 cycles… I do hope so and will be visualising a good relationship with my friend 'The Rev.':-)
This morning has found me with far less 'sweats' and little to no 'coursing'.. so if that is what to expect each week I will cope with that. Will report more as I find it.:-)
Dai.
Hi Kerry & Melvin,
I'm sorry but I missed your post for a while… it may sound strange, stupid even at this stage but while you will remain 'scared', hopefully at a much lower level than now, you will nor be 'frightened' for long.
It will not take long before things start settling down as you gain a better understanding of the what, why, when, and where etc of MM and this forum will act as a buffer for personal support, shared experience and information.
Stay positive, get Melvin to visualise each treatment working and see himself well and in reasonable good health, trust your medics, listen to your nurses, don't be scared to say 'I don't understand' or 'help' but always keep your eye on options and try to ensure that you are receiving the correct standard of care – this forum and the experiences of people ahead of you will help you to understand what that is.
'Welcome'… not to the world of MM but to this forum.
Regards
Dai.
Hi all,
I have informed my consultant that I have a dull ache/stiffness in my left shoulder but she didn't seem too concerned (concentrating on getting me through the qualifiers for the 'Aspire' trial) but I am getting concerned that its not getting better (but not worse either). Its been there for just over two weeks and I don't want it to start affecting my ability to drive, which is one the the few physical pleasures left for me at the moment.
I have my 'D' Day for the trial tomorrow… but either way I want the arm/shoulder examined.
Hope you are all having a restful Sunday.:-)
Dai.
Good on you Tom,
It's good to hear really positive news… and your continued presence and positivity are well regarded and personally speaking always gives me a smile and a boost.
Thank you.:-)
Dai.
Thanks Folks…
I took the bottle in and paid for the testing with some bloods.
While I was waiting for my bloods test my consultant came past and collared me. She said that she had had an email from 'Onxy' the manufacturers and leaders of the 'Aspire' trial and they want all screening results in now!
I have been consented but not screened… so my consultant has said that a specialist nurse will be in touch to tell me which/what regarding the screening processes but we will do them all next Monday (the day of my next consult) regardless of whether the urine test results are back from Birmingham or no. The screening 'qualifiers' include BM Biopsy, ECG, full body x-rays and an MRI or Catscan as well as other bloods… so I will get a top-to-toe examination regardless of acceptance onto the trial…
but I am still hopeful that I qualify AND survive the 50/50 coin toss.
Starting with 0.5% in my P3.;-)
Dai.
Hi Cinzia ,
You don't say if you were given any anti-sickness tablets (Metracoclopide or something like) with your CDT meds. I took them and they worked … every time. They work best if you take them at the same time as your CDT or even an hour or so before.
Dai.
Thank you Jo & Mavis,
I wrote this for my son Ross a few years ago… since then he has married and presented me with a Grandson Owen… perhaps he will write him a song one day – who knows.:-)
Dai.
HI Zoe,
There are a great band of carers here… like buses you might have to wait awhile but then they will all turn up together.:-)
Right now you must feel like someone has pulled the carpet from under your world… the shock and coming to terms with MM must seem overwhelming… but it does start to ease as you find out about the medic's plans and Dan starts getting treatment.
My MM journey started with a tumour on my vertebrae that was touching my spinal cord… but I also had two quite substantial tumours on my head… the frontline treatment I received – CDT – soon saw them off and they have not returned, although they have left little craters in my skull.
Dan is very young and it is very unfair but there are a plethora of new treatments and drugs coming online now and over the next few years and hopefully Dan will stick around until MM truly earns its status as a chronic rather than terminal disease. I was first diagnosed with cancer in April 08 and the drugs and treatment regimes have changed dramatically since then… with trials and new drugs coming on board quickly… each a bit better than the last as far as I can see.
There is another young man who attends the same hospital as me (Nottingham) and he is currently in remission following his SCT (Stem Cell Transplant) as far as I know he has returned to work and the last time I saw him he was looking really fit and healthy.
Please don't despair. This is an excellent site – all you need, so please ignore the temptations of Google and the internet… most of that information is either clinical or out of date – its all here, both the medical information and the moral support.8-)
Stay as positive as you possibly can and don't let despair cross your doorstep.
Regards 🙂
Dai.
Hi Min,
Its great to see that life in general is keeping you upbeat and busy… you are surrounded by love… most of it unconditional, excepting perhaps a few doggy treats and their favourite dinners.
I'm glad you made a friend, even if the 'commonality' was the least expected and the last wanted.. ife really is 'like hat' at times.
I loved your post and I love you.
Dai.
Hi Bridget,
Thanks for replying. I asked in your thread exactly what treatments you have had… I was wondering how you fared on Revlimid… but you have said that it didn't work for you – did they give a reason, or did it become obvious through tumours, new disease etc.
I hope that you find a suitable treatment soon… in the meantime enjoy your new laptop and the new car in a few weeks time. I don't know if you are aware but the Motability scheme now gives a £250 cash back to [b]every[/b] car as long as it is in reasonable condition… assuming that you are on the scheme. We had our new Motability car in October and we paid an excess of £500 to get the model we wanted… but that was cut down to £250 by the Motability cashback scheme.
I hope you well enough to enjoy both… and are still fit and reasonably healthy enough to choose your next car in 2015… you never know, you really don't.:-D
Much love
Dai.
Hi Bridget,
That is rough, tough news but at least they are looking at and discussing options. First step is the surgeon… hopefully he can get to the tumour and take it out… or at least enough of it to allow the radiographer a bit more leeway. If it is down to the radiographer then so be it. I appreciate the problem but these surgeon/radiographers are pretty good at working at close quarters and hopefully he/she will be able to get to it and zap it for good.
I am sorry to hear that the Bendamustine wasn't successful… but there are other novel agents out there… pomolamide (sp) etc… or perhaps a suitable trial.
What have you had so far? I know that my consultant has talked about the possibility of CDT or a similar combination for me further down the line because it worked so quickly and so well for me the first time around.
Try to keep positive as you always are and I hope you have some good news for us soon.
Much love 🙂
Dai.
14 lyrics by the 29th February – different genres depending on how I feel – hopefully I will find melodies and I will record (and post here) any that are completed.
If I end up with 14 lyrics, 7 melodies and 4 finished (recorded) versions I will be happy… with completion of others to follow.
Here is the first lyric… a little country number for starters… melody in mind but another couple of lyrics to follow before I start recording.
Dai.
[b]FAWM Lyric 1.[/b]
[b]Nine Hundred Miles Away
1. [/b]
I met up with an old friend, from a thousand years ago
I always take it easy but man he takes it slow
We took a gig at his local bar, for a steak and bottled booze
And I sang a little country while he drowned himself in blues
[b]2.[/b]
She sat in the front row and her red hair caught my eye
A breezy blonde was set on me but my heart passed her by
A single look was all it took to make me want to stay
But my home and job in Philly, was a thousand miles away
[b]Chorus:[/b]
I need to see her face to face, where nothing can disguise
The binding truth and certainty that echoed in her eyes
If she tells me that she want me, my roots will change that day
?Cos I can?t love her as I should, nine hundred miles away
[b]3.[/b]
A word or two alone with her then a slim hand grabbed her arm
Her blonde friend was at the end to pull her free from harm
A glance over her shoulder, a smile then she was drawn
Away from me and I was on the road home come the dawn
[b]4.[/b]
For several weeks that glance and smile haunted every day
My whole life suspended; my thoughts all bent her way
Then my old friend he called me and slowly broke the news
She was asking after me and I knew I had to choose
[b]Chorus:[/b]
I need to see her face to face, where nothing can disguise
The binding truth and certainty that echoed in her eyes
If she tells me that she want me, my roots will change that day
?Cos I can?t love her as I should, nine hundred miles away
[b]Bridge:[/b]
I could take the first step and climb aboard a train
I thought about a Greyhound but then I thought again
Too much time for thinking and I might change my mind
So I jumped on board this airplane and left my doubts behind
[b]Chorus:[/b]
I need to see her face to face, where nothing can disguise
The binding truth and certainty that echoed in her eyes
If she tells me that she want me, my roots will change that day
?Cos I can?t love her as I should, nine hundred miles away
Hi David & Mavis,
Thanks for the concern and the nudge.:-D I last posted on Monday but I suppose I have been a bit quiet for me lately.:-)
I took in my 24 hour urine collection last Thursday and had my bloods taken in reediness for my selection for the Carfilzomib trial… or not. I then stood back and waited for news of the results. I was expecting a phone call from my consultant on Monday or Tuesday to serif I had to prepare for the next step or start on Rev & Dex. I thought that if I was on the trial I would have had a call – either way… because I have the Rev & Dex and antibiotics etcetera from my January 9th appointment when my relapse was confirmed.
I received a letter yesterday calling me in for an appointment next Monday… whether for the trial (only if Myeloma showed up in my urine) or the straight Rev & Dex etc. I don't know. I could call but there is a part of me that feels I shouldn't have to. We will wait and see.
I have a pain/ache in my left shoulder which is new… it could be the disease or it could be posture/sleeping position etc.,.. once again we will wait and see.
I really do want to go on the trial but I feel that a month after confirm of relapse that I should be starting treatment of some sort. Apart from the shoulder ache I fee l quite good… recovered from a cold with no ill effects (no pun intended) and my appetite is good… but I must admit to feeling a bit down and stressed because I just want to get on with it.
… and its snowing again.:-)
Has anyone got a link to Jet's blog?:-)
Dai.
