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Helen 12 years, 4 months ago.
Hi Dai
Mmmm yes never quite know what to expect until you get there, most unpleasant and unpredictable , almost disabling sometimes
Love Helen
Hi Helen,
Now ain't that the truth.:-D
I have had some of the most painful and stressful times of my 'journey' while sitting on the toilet with a constipated blockage… now normally a few quick successions of Movicol does the trick but can still wipe me out… then there are the liquid pessaries, saved for emergencies which can be quite productive yet still debilitating… but then there the few occasions when everything has been tried and everything has failed and I am completely bushed and feeling beaten… but you know you can't leave it. :-S
Then it becomes a mathematical problem.. where you have to think things through, take very deep breaths and contracts before sitting forward and work the problem out with a pencil… or your fingers and toes (well, perhaps not your toes).>:-(
Those occasions are truly horrific and thank goodness they are rare occurrences but as recent as a fortnight ago since the last one… when I really thought I would need to give in and call the hospital… it was painful beyond measure. But I got angry with myself and imagined myself back down the pit.. where I just went for it without a stop for a rest and I won… but the price was a hard one to pay… I was bedridden for two days… just completely and utterly wiped out and I made like a jelly.:-P
Not a pleasant post I know… but if it acts as a warning then all well and good. If you are on Movicol or some such similar medicine then take it religiously… even on, no, especially on those days when everything is passing well and you feel good… those are the days you have got to watch because you can't afford to fall behind… catch up is a dangerous game to play… as I have found to my cost on more than one occasion… and I of all people should know better.;-)
Still, it's out now (excuse the bad pun) and I hope my bad experience acts as a caution for others. 😎
Dai.
Hello all,
Yes not a pleasant post Dai but one I concur with. I haven't experienced any problems with constipation as yet in fact the total opposite. Today I took Dex early morning and Rev at 18.30 to see what difference if any that makes.
I've had slight cramps today but not so severe and the diarrhoea has abated and haven't felt so tired. Zometa tomorrow and I'll see how it goes. All I want to see is those PP's starting to fall and then we may just have a result.
One thing I do find a bit of a bind is those injections to keep my blood flowing. My stomach is covered in bruises and I've only just started. The problem is you supposed to pinch an area of loose skin around the navel but my stomach area is quite firm so when I put the needle in it forces itself out. I'll have to start eating more meat pies and the Dex should take care of that. If it's not one thing it's another. I did mention this to the nurse and she said maybe I will be switched to an oral alternative.
Keith.
Well boys as we've 'got down and dirty' and totally personal………;-) . I have noticed that there is a pattern, and here is where the diary comes in handy again to make notes! The first week is normal to diarrhoea, the second normal to bunged up and the third is daily fibre, prunes, figs, movecol, dynamite, calls to the CSN for extra supplies, total fatigue and general fedupness, usually by 10 am! In my experience.:-( And terrible wind and bloating all the time.! I can tolerate it……. Just!! Because if it keeps my bone marrow like Beirut instead of Gosforth so the mm cells don't like it, then keep it coming. However so far with my extra days off it I've no improvement with my sense of taste yet, maybe it's gone for good?
I'm just on soluble aspirin with it as antiembolic.
Love Helen
Hi Helen,
I agree it's a small price to pay to get the PP's under control so I'm with you bring it on. I had really bad constipation and agonising pain during the first two cycles of Vad (my first treatment) but no problems with my second treatment which was velcade. Have you had any mouth ulcers? My tongue in particular feels like I've been chewing broken glass. I always use a none alcoholic mouthwash so hopefully it will take care of it asap. The Dex is the culprit and being on such a high dose is certainly not helping.
Take care of yourself…Keith.
Hi All
Can i put my two pence worth in!!!
I can not comment on the treatment because Slim has not had it, but and its a big whopping but.Slim had an anti sickness tablet that caused constipation.So much so .I ended up walking out of the hospital with the biggest carry bag of bowel stuff i have ever seen.
Movicol twice a day Lactulose three 5ml spoonfuls twicw a day and two senna tablets at night and that is one months supply,I think once the bowel has problems you need the movicol to stimulate the bowel.
The worst thing you can do,is sit on the toilet for hours,i know its a horrible feeling knowing you want to go,and scared of getting caught short,but lets face it,its just ….. gloves come in handy.With movicol in time should get the bowel back to normal,if you think about what the chemo does ,plus extra tablets that are great to make you stop feeling sick.Its a wonder they do not supply these things as norm.
Keith for your mouth i would recommend Nystin [spelling]works wonders.Eve
Hi Keith,
What strength of Clexane/Enoxaparin are you on?
I was on 140mg for 6 months (from July '11 to end of December '11 – started when I developed a DVT during Velcade) and since then, starting in January this year I have dropped to a maintenance level of 40mg… making it a year in total.
I have lost weight overall but my stomach always looks extended (a bit of a beer belly without the advantage of the beer:-( ). I have had periods where my stomach has resembled a dart board, with similar coloured segments… but I now have a system where I start on the very outside and alternate… with the second on each side in the middle, back to the outside, into the middle… again alternating top and bottom… you get the idea.
It was worse with the big dose because of the bigger needle and the copious amount of liquid… [b]an unintended, sometimes involuntary rub of the area after injecting is the worse thing you can do because it causes bad bruising[/b]… you have to allow the liquid to disperse naturally… with a 'grin and bear it' if it stings.
The 40mg dose is a doddle in comparison…. with a micro needle and far less liquid to disperse.8-) But I'm told I will be on it for life.;-)
Regards:-)
Dai.
Hi Keith
I've had a few mouth ulcers but not many, I can't use mouthwashes at all because they sting too much, so I just clean my teeth and rinse with cold water, extra strong minty toothpaste is unpleasant. My mouth feels as though I've just burnt it with too hot tea, so I have to be careful not to burn it if you get my meaning. I still find spiced food, alcohol, most citrus and believe it or not, cinnamon flavoured jelly beans caused me a great deal of discomfort yesterday, so I'll not be having them again:-(
I have just got used to it over the last 17 months, it's disappointing when you go out to eat and things taste funny, so I don't feel as sociable, but as I say at the minute I want length of life and will cope with reduced quality if the revlimid gives me it.
Hope it eases off soon,
Love Helen
Hi Phil,
great to hear things are working out for you after your 2nd SCT. I had mine in August also but relapsed after only 8 months. I never got the magic zero PP's as I did the first time but that isn't unusual in itself so I battle on.
As for the passing out incident I think it was just a blip on the day. Once I managed to get back on the bed I was fine and it only happened the once. I put it down to the new effects of the Revlimid and the hospital are in agreement with that. I have gone from Terrible Diarrhoea to equally awful Constipation all in the space of a week and from what I've been reading this seems to be quite common with Revlimid. Otherwise things aren't too bad and more will be known when I reach the 4th cycle or thereabouts as to how it's actually working. My PP's went up from 5.65-29.66 in the space of 3 months the last reading being just before the latest treatment started and the BMB showed 35% MM marrow activity. Bloods will be tested on a month to month basis so more should be known next time.
Once again good to hear from you Phil and I hope you stay well for a long time to come.
Take care.
Keith.
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