[TinaPParticipant]

Hi All,

I've been told that I must try and drink 2 litres of water a day. I'm finding this difficult. I know I must protect my kidneys, but 2 litres is a struggle.
Anyone having the same problem???

[tomParticipant]

Hi Tina

Yes it is hard to do but i was told 3 ltr a day :-0 and that can include tea, coffee and or fruit juice I myself have also added to that list "Vodka,red wine and of course beer" ha ha.

Good Luck and Happy Drinking 😎

Love Tom "Onwards and Upwards" xxx

[BADGERParticipant]

hi Tina

I was told 2/3 ltrs a day the more the better and yes it can include tea squash not much coffee for me as i have damaged kidneys also the odd glass of wine is ok if you have some water along side kidney specialist told me this I prefer red myself!!:-) 😀
Good luck Jo x

[jmsmythParticipant]

Hi Jo and Tom and all

Frank says to tell you to add guinness to the list!!!

Love jean xx

[TinaPParticipant]

I like Guiness, so looks like it will become my favourite 'tipple'.
Thanks for all the support.
Should be starting on the MyelomaX1 trial in a couple of weeks.

[tomParticipant]

Hi All

Well I love the Irish they are great people but I cant stand that black stuff they Make 🙁 but that said it might be better in dublin? who knows I just might try a trip to dublin and try a half?, hope you all are enjoying your 3 ltr of fluid ? lord knows how much vodka I had last nit lol

Love Tom "Onwards and Upwards" xxx

[eveParticipant]

Hi Tina
Fluid is a must,I have the same problem getting water down Slim,I bought 2 plastic jugs with lids,and fill them up with week juice,and put in fridge,Slim found it easier to have a small glass,so kept it filled up constantly,he went through a stage of fizzy drinks,my attitude was anything that goes down,you will find your taste alter all the time,if you want to be more regimental about it,1/2 pint every hour,but when you go out,make sure you take bottles with you,I use to freeze them so during hot weather you always have cold drinks.
Good luck with the trials Eve

[DaiCroParticipant]

I'm having a rough few days at the beginning of my Revlimid & Dexamethasone regime… not helped by a 'frozen shoulder' which in truth is a new area of mm. So, while I am feeling a bit sorry for myself I know that a couple of decent nights sleep, a bit of pain management and upkeep of my liquids will soon have me feeling much better.

The liquids (and controlling the No.2's through poo juices) are essentials for MM'ers… they are the first indicators that something is wrong and should never, ever, be dismissed lightly, or even as a nuisance.

I don't feel like drinking at the moment, it is a bit of a chore but if I don't I will end up in hospital because I have learned that dehydration is inevitably followed by infection.

Drink up, keep a bottle of water at hand, topped up often and ask a loved one/carer to remind you.. and soon you will be balanced and balanced means better.

Trust me on this.:-)
Dai.

[susan123Participant]

Hi All,

I drink about 2.5 litres of water per day and have done for the last four years since diagnosis. I use a water filter jug and a 2 litre plastic bottle, and drink it throughout the day. I also find that in the winter it is really difficult to drink water so I don't put it in the fridge as it goes down much easier when it not too cold. In the summer I find it easier to drink the water when it has been in the fridge, I hope this helps – oh and yes I drink guinness too !!!( in moderation of course )

Love sue xx

[tomParticipant]

Hi Dai

The frozen shoulder being a new area of MM can you throw more light on that for me please as I have discomfort rather than pain in my right shoulder (lol i hade to check which side it was on L/R lol)

I hope you dont suffer too much on the early days of your treatment.

I dont kow if you buy water I used to as our water aint that good, so when we did a new Kitchen I had a filter put on the tap and you pull the bar forward for normal cold and push it back for filtered and I can tell the difference

All the best

Tom "Onwards and Upwards"

[DaiCroParticipant]

Hi Tom,

I was due to start Rev & Dex on January 9th but I was (easily) persuaded to hold off on the chance of getting on an active trial for Carfilzomib (of which I have heard nothing but praise). To qualify I had to have 0.5% myeloma present in my urine.. which I didn't manage to achieve over 3 x 24hour urine collection tests conducted over the following 7 weeks… and now they have closed all entrance to the trial.

On January 9th my kappa light chains (Bence Jones MM) were only at 120… so very low and no active disease showing but over the following 7 weeks I started getting rib aches and other 'flags' that my disease was getting active. My shoulder started hurting a couple of weeks ago and I reported it.. but we were so close that we decided to hold off. Off course, just my luck, the trial closed and I have active disease.. which means the Rev & Dex have to start work straight away, damping down current problems, instead of just keeping them quiet like they are meant to. Revlimid is a therapy, not a chemotherapy, so it might well do the job but it means having to get my mm straight first… whereas if I had started Rev & Dex in January there is an excellent chance that the new disease would never have formed.

We took the chance… we failed and now I have got to pay the price for a while. Hopefully it will settle down soon and we can form a relationship that lasts long enough for Carfilzomib to become an alternative. Only a couple of years or so.:-S

Ho Hum.;-)

Dai.

[tomParticipant]

Hi Dai
Thanks for that info I have had a little bit of dicomfort on my shoulder but I put that down to doing too much and or sitting in a drafty room at work ?

And re your new? treatment I have said before if anyone can do it your the Man 😎

All the best Dai
Tom "Onwards and Upwards"

[mhnevillParticipant]

Hi Tina

How I sympathise with you over water intake. I know it's so important to me, but I really struggle with it. I hate our tap water (and feel guilty about it!) I have to drinl squash which my son-in-law says are full of carcigens! Your post reminded me I must try harder!!!

Best wishes.

Mavis

Hi Dai

Glad you have at last got on a regime of treatment – soory it has been a bumpy landing. Like Tom, I'm fastinated to hear how they know your shoulder pain is down to MM and not arthritis or muscle strain? Did you have another xray or MRI scan?

Hope things go better from now on, who knows, you might respond better to Revlimis and Dex better than you would have the Trial drug. Hope you don't get too many restless nights with the dex.

Very best wishes.

Mavis

[PerkymiteParticipant]

Interesting – I was told to drink 3 litres of water a day, Tea, Coffee were not included because they are diuretics.

I drink 6 pints = 3 Litres a day. I use a pint glass to ensure I get it right. I find putting it in my microwave for 30 seconds takes any chill of it. I have now been doing this for 2 years and have got quite used to it, in fact if anything I now enjoy it. However, I still enjoy my Guinness and Red wine as well.

Kindest regards ? Vasbyte

David

[DaiCroParticipant]

Hi Mavis,

My consultant hasn't ordered any new scans etc., saying that while it might be a coincidence, where myeloma is a factor she doesn't believe in coincidences. Remembering that this is not in isolation… I do have other, older areas that have flared up at this time, specifically in my ribs.

I go back next Monday (week tomorrow) for my first bloods reviews (Rev can play havoc with white cells and neutrofils so they keep an eye on them over the first couple of months) if my shoulder is any worse, or even still the same, I will ask my specialist nurse (doing the review) for further investigation. My consultant did say that if it is new disease then the Rev should see to it… so I have got to give it a chance.;-)

Dai.

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