Thanks, Finn. I’ve managed to speak to a specialist nurse today and they are confident of no clashes as they are all tried and tested meds used extensively with no reported problems through interactions.
As regards Ferrous Fumarate; When originally diagnosed with Myeloma in 2013, the ONLY symptom I presented to the GP with was severe anaemia. I also have a history of low blood pressure. IIRC, I was put on FF straight away even before Myeloma was confirmed – at which point my HG was 69. I was on 3x 200 mg a day throughout chemo and into 2014. I was then reduced to 2x210mg which is where I am now, despite restarting chemo. Mind you, my last HG was 116 which I believe is only about 15% lower than a safe level. I have very little stomach pain per se, but the one continuing symptom throughout semi-remission is regular, if usually short-lived indigestion (not neccessarily acid reflux). This I pit down to a combination of liver cirrhosis, permanent physical damage (including hernia which surgery is not advised unless strangulation symptoms present); side effects of omeprazole; lack of exercise (its more problematic in winter) and posture (basically we need a new sofa!); and certain foods (too many carbs and not enough bran?).
I think it is certainly an idea to raise the subject of Allopurinal even though they tell me it does react with anything else I’m on (this backed by a website on interactions, I’ve looked at). However, I have no history of gout and (touch wood) my kidney function has remained very good throughout my illness. So thanks for that point in patricular.
I currently have swelling of both abdomen and legs/feet. I was on the RCD trial, but after various problems – latterly, a massive drop in sodium levels – corrected by 4 days of saline drips and virtually no liquids by mouth (eating normal meals was fine), the Relivmid was dropped for the 4th cycle. The abdomen is uncomfortable, especially after pulling a rib muscle three days ago, and as I am in the middle of the Dexamethosone, the usual fatigue is setting in. The abdominal swelling resulted in a liver biopsy (My LFT readings have been high throughout), revealing scerosis, but not establishing whether the chemo was the sole cause. The sodium drop also led to my Water tablets (Spironolactone) being stopped, but they have just been restarted on half dose (50mg a day). I would say my abdomen is "full term pregnancy" levels, but last time the Water tablets did start working within a week or so. They also worked on swollen ankles and feet, but this time, my swelling has extended to the right thigh and calves.
Is Frank on Water Tablets? Also, has draining the Abdomen been discussed?
I'm due back in the liver clinic at Manchester Royal on Tuesday to discuss options for the abdomen, but I can't see a draining of the abdomen helping my legs!
Thanks, San. What I didn't mention is that when I returned to clinic from having the ultrasound done, I was then seen by the original doctor. He was all for admitting me to stew in hospital over the four night Bank Holiday weekend, until he actually spoke to the ultrasound technician. Instead, I was called back in today, just for another round of blood tests, but (surprise, surprise), I was not expected. Anyway, the Nurse sorted it, but it meant (again) I didn't get the oppurtunity to raise a "side effect on side effect" question. The dilated stomach had stretched the skin below the abdomem, leading to an occasional burning senstation – to be expected, apparently. However, this is now affecting my left thigh. With the usual precaution of using nothing that could impact on the liver, can anyone recommend an "off the shelf" cream or ointment to allay these symptoms in the short term?
Apple
Chemo still suspended. New doctor quickly organised an ultrasound. Ascites diagnosed, with 50mg a day of Spironolactone prescribed, for now. Hope it begins to take effect soon.
Apple
Thanks, San.
My feet were a little better this morning, so I have managed to get some new stretchier socks on, and go and trawl some shops for alternative (ie. 2 sizes above normal) softer, footwear. I've got two different pairs, and as each cost less than the taxi fare to the hosptial, they will pay for themselves in one use. Besides, it meant I got some much needed exercise and fresh (ish) air.
No date for a liver scan yet, but a long delay in restarting chemo will be a bit of a shock, as apart from raised liver function recorded on day 7 of each of the first two cycles, and a short suspension of Lansoprazole on the second occasion, I've been led to believe that nothing unexpected was causing the doctors concern. I doesn't help that out of 7 check ups, I've seen the MacMillan Nurse once, and five different doctors.
Apple
Having got through the first cycle, and started the second cycle quite well, I "hit the wall" on day 13 with severe fatigue. I dragged myself in to the check up the following day (2 hours late and by taxi), where all results were "normal". The fatigue took a further 5 days to even start wearing off, but I completed cycle 2. On going for the check up last Friday, the doctor has suspended cycle 3, pending a liver scan. Results weren't discussed, but he seems to have made this decision based on my increasingly distended abdomen. No idea when liver scan will be, but continuing with all the other drugs and due back in clinic Friday.
And what's all this got to do with swollen feet (due to Water retention)? Simple, its getting worse and this morning, for the first time ever, I simply couldn't put anything on my feet. Note that the doctor won't prescribe water tablets or similar, in case they affect the liver. So, if they don't go down naturally, how do I get to – and indeed around – hospital on Friday? Not to mention going stir crazy worrying about the implications of liver problems, chemo delay….and the fact that the Insurance company have rejected my claim for the holiday I was due to start three days after diagnosis, but won't explain clearly why! Over £2000 is at stake.
Thanks, Dai – and just about my size too! When I lloked on Amazon, there seemed nothing in the 7-11 (shoe) size for any socks. This will help medium term, but still hoping to get through next three days.
Hi again, Eve.
I should have been more explicit. Work have actually been very accomodating, especially with my reduced hours. The problem is there is physically nowhere to raise my feet. Conventional socks were stopping the water at my ankles, so it eased once I got home, removed all footwear and bathed. Its only this last few days – coinciding with using these bedroom sandals, and starting Cycle 2, that my feet themselves have been swelling.
Normally, you would be right regarding bus fares – anything above 2.5 miles return is a minimum of £4 in Greater Manchester – however, I have a free pass.
Again, though, I have to stress, its the next three days I am most concerned about.
Thanks, Eve. There is a factory outlet a few miles down the road – albeit the bus is only hourly at weekends. I have been lent a pair of bedroom sandals, but don't think these will do for the office. I'm about to lie on the bed with raised legs, and I suspect this and the drier weather forecast for tomorrow are my best hopes for working the rest of the week.
Phil
Thanks again, Eve.
I know I'm obsessing on things as they come up at the moment – basically to feel that I'm doing all I can myself to minimise the various pitfalls looming. The more I go in to it, the more it seems its just a matter of adding more water to my usual routine unless the Doctor himself makes a more specific recomendation. One pharmacist has just told me to make up "at least half" the target with water. Once you include 500ml plus just to down the tablets, another litre isn't anything like as daunting.
Phil
Thanks, Eve. I think I'm about 58kg, so again thin, but I always have been. It also sounds like (in general), maximising water intake is more relevant to kidneys rather than liver. I'm not going to manage the 2 litres of sparlking today, but I think I'll manage 1.5. Even once out of the fridge it is staying fresh a lot longer than tap, even though it loses its fizz a bit. Equally, I don't want to be gassy all night, anyway. Plus, if you then just use tap water for the tablets, you still surpass 500 ml – more so when taking 20 individual tablets for the Dextro. So, the 2 litres will easily be reached, before considering other fluids.
I am also up to 16 injections now, and tonight's actually went as smoothly as any. For some reason, they are generally easier on the left hand side of the belly. Notwithstanding a shallow bruise on that side, there has also been less blood leakage on that side.
Thanks, DickB and Ann.
Yes, I'm using bottled water, and it does last a bit longer than tap water before going stale. I'm closely monitoring my total liquid intake today – as I am not leaving the house – and will just total it up to see how close I can get.
Ann illustrates the confusion over fluids though, and I'm going to approach the Doctors and Nurses in a bit more detail about it.
Phil
Wow – that must taste awful! I find tap water stale after about 20 minutes, maybe a bit longer in bottles. Sparkling lasts a bit longer. Obviously, there are ways to get round that, but I think I'd better get the calculator out; 150 ml an hour doesn't sound so bad, but how many more visits to the bathroom a day? Like anything else, I suppose its an adjustment, but it would really be more practical if it included soft drinks, juices and milk.
One other thought, is warm (as in boiled but left for a while) water just as good?
Thanks, David. All (healthy) ideas about putting weight on are welcome. I have a high metabolism anyway, so have always been thin. I'm almost 6ft, but have rarely exceeded 10 stone all my adult life. Currently, 9st. I too am not bothered about hair loss – barbers never open on time round here anyway!
I do struggle with the water intake. One question, how literal is "water". Others just say 2-3 litres of "fluid". Presumably, Coffee doesn't count, but does tea? Also, milk itself? Sugar apart, presumably all soft drinks (except Cola?) and juices do?
DickB: Slightly more depressing, as in general (not just me personally), the Doctors are pinning high hopes on Revlimid/lenalidomide. Having said that, the readings were based on the first 6 days of treatment, as they were awaiting the next results. They haven't rung me back to say alter/reduce the intake, so I suppose they are reasonably happy with the 2nd week's results.
Thanks, Perky & DickB. I have not been specifically diagnosed with any sugar intolerance, but in the long round of tests to reach the MGUS diagnosis, gluton and wheat intolerances were suspected. The suggestion of porridge oats is a common theme, and I am going to trawl round one of the local Supermarkets with some ideas off their own home deliveries section later this morning. Unfortunately, traditional markets are fast disappearing locally, underneath town centre retail parks and associated car parks, so on a day like today, anything bought fresh at the nearest remaining one (about 4 miles away) will start to deteriorate after a bus/walk of nearly an hour. OTOH, the Supermarkets themselves do have small "fresh markets" and baking sections as Perky says. Although, general attempts have been made to cut down processed foods, particularly at weekends when there is more time and choice, the latest advice from the Myleoma nurse on the ward is not to obsess on this sort of thing.
I have always been naturally skinny, and indeed my weight at diagnosis date was actually half a stone heavier than the figure that caused me to go to the GP at the very beginning of this process in late 2007. Consequently, to build my strength up – not least to provide alternative sites for Dalteparin injections – I've been told a bit of body fat will actually be beneficial. Yes, usual rules; stir fry not deep fry; white meat not red (especially if the Iron tablets are working), but don't worry about veggie based pizzas etc.
I'm now past the half way point of the first cycle, and the only concern (and its par for the course) is my Liver function is suffering. Nevertheless, they have said to continue the last week without changing the regime, and they will presumably weigh things up at the end of the first cycle. Strict alcohol ban for now, but that is no problem for me, and I suspect its yet another aspect helped by constant fluid intake.
