[peterlParticipant]

Hiya again Rebecca,

I think it would take some proving that any benign mm strain (keeping a more aggressive one at bay) would definitely kind of ‘give-up’ on relapse and be courteous and let the nasty little devils take-over!  Whatever the Beacon says.  It could well be that on relapse (however one defines it – and that’s a whole chapter on its own), it’s just the magnitude or increase in the clone copies of the existing strain that causes the increase in whatever the parameters  of the items tested in your blood.  The mm cells do mutate, but they also identically increase I understand.

And I’m not sure of the accuracy of the claim that benign excludes nasties anyway?  But I stand corrected if the Beacon post is correct.  Sorry to be a bit -ve in this respect.

I stick by what I said, I personally (as a medical layman) think your unique response has been pretty good (I’m saying that as an understatement), and I think you can personally look forward with  optimism!  Get your schedule of renal blood tests securely in place, and forget about tomorrow.  If I were in your situation – I’d be happy – and certainly would look forward in a good way.

Best wishes,

Peter

[rebeccaRParticipant]

Hi Peter..thank you. My concern for kidney is when I relapse etc 4 yrs ago I was at 5% then 16% and stuck at that for months and was told it was unlikely to rise – SCT’d at about 20 (2yrs 10 months ago) slowly climbed to 32 then stuck and last check was 37% and am hoping it’s not a blip but another slow climb!

Hi Dean, Yes information overload and I am notorious for only remembering the bits I want to hear so used to take in a recorder with me to digest later. I am sure they mean you will be on an open ward for the chemo bit (very uneventful and no S&D) then move you when you start to decline after a few days? 3 – 4 weeks is what they tell everyone because if you hit a bad infection it will be that and if they tell you 2 -3 weeks you are desperately disappointed if you have to stay in – reverse psychology by telling you its a long time and you have that mindset and you are then very happy when you are out in 2 – 3 weeks. I hate to say it but as with everything associated with MM it is a very individual experience, yes we all have the S&D for a few horrible days but the severity of it varies. I went in fit as a fiddle, positive mindset etc and spent most of the time immobile because any movement made me sick..every morning I was turfed out bed and for my reward..I was sick etc. They have masses of sickness drugs so you just to have hit on your formula and in the end I was just nauseous.I cannot imagine you are in an open ward at all when you go down hill as in the private room and with varying drips I only had to take 3 steps to get to the bathroom..no time to wait in a queue. However, the first days were absolutely fine I actually wondered what all the fuss was about until I started down the neutroprenic route. I had mine at Leeds they made me get a hickman line fitted before I went on the waiting list so you were ready (this stopped me playing tennis and going to the gym) and I only got to go in just before xmas after several conversations from my consultant – so I hope you pin them down to a date. I had my new cells put in on my birthday and xmas day I knew I had turned the corner and was nearly home…all good omens! Boredom is the worst of it all and the lack of inclination to do anything, I’m afraid I wallowed like I have never wallowed before but I was on my own most of the time as I chose a hospital that was quite a distance away and my husband needed to work and be home for my daughter so we just phoned mostly which was enough. Skype may be better if you have a long travel – one day I asked him to come so he made the trip after sorting everything at home and then after 20 minutes I’d had enough. So, if you can, you dictate your contact to suit you and I used to just text family with little updates as didn’t feel like talking. Sorry I am not painting a good picture but it was all very doable just miserable. Nothing drastic happened – no mouth sores even tho’ I never sucked ice like everyone recommends – again think it’s all very individual. Looking back there is not one thing that I think was horrendous just a couple of weeks of miserableness. If you’re lucky you’ll sleep a lot and that will pass the time. I hear lots of people say they did but it never affected me that way unfortunately. As you are going in at the cold/flu season I would limit visitors as it’s quite frightening thinking they might be carrying germs. My husband was very scared to come in as he was at work with everyone having colds and whilst he didn’t (never does) he thought he might be a carrier. You really do start worrying about the dreaded germs and this side gets worse when you come home – all very expected under the circumstances. Try and have lots of good treats before you go in..it will benefit the whole family as this is a huge strain for partners and children and perhaps moreso when you come home and everyone treats you with kid gloves and become obsessed with washing hand, door handles, light switches…so before it starts all enjoy some less stressful times and then start planning for a fantastic xmas and optimistic new year.

Rebecca

[deanParticipant]

Thanks Rebecca for all your advise sorry that I have been keeping you busy.  Yes the hospital said there is a high chance I be on a open ward for the first week until my blood levels drop so not happy about that when sick… they also do transplants now for patients who need dialysis for there kidneys. . Got the impression it’s getting common. Also from next year they will be sending patients home after there chemo ( like they do in the states now) as most patients get infections from there body not others. Either way for piece of mind I want to be in hospital if given the choice.. A big thanks again

Regards Dean

[rebeccaRParticipant]

Hi Dean, Yes am always puzzled a bit about the outpatient procedure in the US and hope in the UK it is only for those close by and who seem fantastically well. I seemed to have obs done every 4 hours for all my stay and would have scared the family like hell at home as I did not look or act well. I think in London there are some use of hotels near the hospital but for a limited time only. For such a short time and the feeling that this is a “major” undertaking I’d want to be miserable in hospital with help to hand – tho having said that I never needed to buzz for help or imposed on the staff – it was just the regularity of obs which is both a nuisance but a comfort. Yes I am aware of STC on dialysis – the reason I had travel so far was because the hospital I would have chosen did not have dialysis facility so if I took a turn for the worse I would be ambulanced to a major hospital 10 miles away but the thought of having to do that and maybe having S&D at the same time was too much to comprehend so I opted for Leeds and didn’t need the facility thankfully.

Rebecca

[louishenryParticipant]

My experience was similar to Rebecca’s. First week twiddling my thumbs wondering what all the fuss was about, second week horribly horrible, third week recovering. I was in an individual room throughout in Southampton.

[greg777Participant]

Hi Dean,

Sorry for butting in, but I figured you might appreciate as much insight as possible. I have had two transplants and melphalan made me as sick as a dog both times – it didn’t last long though – only about 24-48 hours if I recall correctly. The other parts of the conditioning just made me really sleepy which was actually quite helpful being stuck in the hospital!

Also, if I have read the thread properly, my biggest advice for you now would be to build up as much strength and put on as much weight as you can between now and your transplant date. It will definitely help as you go through the transplant process.

All the very best, Greg

[deanParticipant]

Thanks for all the tips.. it really helps me.. regards Dean

[Author]

Posts