[appleParticipant]

I started pill based chemo on 22nd June. No major problems so far, but I'm having great difficulty reducing sugar intake (recommended due to the Dextamethasone) – mainly becuase of the massive sugar content in "healthy" cereals and fruit juices. Any suggestions regarding low/no sugar Cereals and juices/soft drinks – prefarably available from accessible Supermarkets, which in my case is Asda, Sainsburys or Morrisons?

Also, the Dalteparin injections seem to be causing my epidermis to toughen up after just 13 days, despite little visible scarring. I have very little flesh on alternative sites such as upper arms and thighs, so any thoughts on how to keep the distress to a miminum over the next 99+ days of chemo? I gather the toughened skin doesn't actually increase danger as the needles are not long enough to penetrate deeper if you go in faster.

[dickbParticipant]

Hi There,

Although we don't have a low sugar tolerence we are careful about intake. This is what we do:

We make our own Musli, the oats, Barley, dried fruit and nuts. All these things are available from the health section or baking section of the supermarkets. The dried fruit is cheaper in Baking sections than in the health section as well.

We dilute fruit juice with water, something like a 50:50. Orange juice does taste diluted but others are OK. Avoid stuff without sugar, they put in other sweeteners that can be more harmful – noticed how kids are so hyper they bounce of walls?

Porridge is good, mix some Quark in, it's not so bland. Avoid supermarket shopping of Fruit and veg, if you can, go to the market, its cheaper but be aware the fruit won't last as long, I assume you read the labels on the packaging to reduce the intake of processed food.

I am not a health expert but I do know how easy it is to buy convenience foods which in a lot of cases are more expensive and less healthy.

[PerkymiteParticipant]

Hi Apple,

May I wish you a warm welcome to the site.

I have been on the site since 2009 and I think that is the first time I have seen somebody ask about reducing sugar for Dex. I assume you are referring to the Lactose that Dex contains and have been told by your Doctor that you have an intolerance to some sugars?

We do have one or two "herbal" people on the site and they will no doubt pop in and help you.

Kindest regards – vasbyte

David

[appleParticipant]

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.

[PerkymiteParticipant]

Hi Apple, I was actually told to put on weight and maintain a stone over my fit weight it I could. Normally 11 to 11 1/2 stone is my weight but I have maintained 12 1/2 stone ever since 2009.

I have always said I do not mind being bald, and I cannot do anything about being short but I am blowed if I am going to be Short, Fat and Bald. And here I am with a little pot belly ahhhhhh :'-( on doctors orders !!!!!! 😀 😀 It is not to bad and I feel good and people say I look fit and well so it is not all bad.

Are you drinking the 6 points of water a day?

Kind regards – vasbyte

David

[dickbParticipant]

Read you comment about your liver function. I have just spent 3 months without Chemo because of raised Liver enzyme levels caused by the Chemo, I was on PAD, it was the 'A' drug that did it.

Get them to check and monitor your Alaninaminotransfer and Aspertataminotransfer Enzymes. I was jaundiced for a while and if there is a problem, they will suspend treatment. It will also limit future Chemo options, eg, I cannot have the 'A' drug nor Revlimid again. See my post 'Supposed to have started 2nd Chemo' in under 50's section.

[appleParticipant]

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.

[PerkymiteParticipant]

Hi Apple, Over the last 3 years I have heard many arguments regarding drinking the 2-3 litres (6 pints).

When I was told in August 2009 that I had to drink 3 litres of water a day to ensure my liver and kidneys were kept as clean as possible. I asked the Consultant what it included. He said simply it included water full stop. He said it is in my own interests to ensure I drunk it and not to listen to arguments about cups of coffee or decaph tea etc…etc … 6 pints a day end of story was his reply.

Ever since then I have basically complied. Every morning I fill 6 x 500 mil bottles with tap water. I put then on the side in the kitchen and ensure that by the time I go to bed they are all gone. I have taken the odd day off when I have to or drunk a little less because of circumstances of the day but 98% of the time I have complied.

Kindest regards – vasbyte

David

[appleParticipant]

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?

[dickbParticipant]

In layman terms. The idea of the water is to prevent damage to the kidneys, as I understand the very fine passageways in the kidneys can get blocked by the MM, once blocked, the kidneys can't function properly and then are damaged. The water is there to ensure the kidneys are constantly getting flushed through to prevent a build up of the damaging stuff, they are after all a filter and filters can easily get blocked and become useless.

Have you thought about bottled water?

[anndrysdParticipant]

Sorry, I can't comment about diet, but I aim for 2 litres of water and make the rest up with other things, e.g.fruit teas, teas and coffees or soup. After all they count them as fluids when you're an in-patient. I'm a bit more neurotic about it at the moment as my creatinine levels are rocketing about somewhat. I take the view that if I'm sitting ,I can be drinking. Fortunately the local Scottish water is eminently drinkable. I keep a nice French 400ml beer glass for that so it's more palatable. For out and about I have a "bobble" which is refillable and has a water filter as well. It's 500ml.
As to the Dalteparin my thighs have toughenend up. I used to go day about one thigh, tummy , other thigh. I don't have any lack of flesh there, but it was still a challenge to find a non-bruised bit. I would do them first thing in the day to get them over with. I needed the radio or tv on, just slightly too loud and would tell myself that it would be over in a couple of minutes. Now my platelets are well below needing Dalteparin, but I have EPO once a week and use the same priniples- though there's no stinging with it.

Hope this helps.

Ann

[appleParticipant]

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

[eveParticipant]

Hi

My husband Slim has a hard time with water in take,my attitude is why make your life miserable,as long as the kidneys are getting flushed through that is what matters,his tasty can change on a daily bases,so one day he drinks a lot of milk,another diluted orange,another fizzy drinks,he drinks a lot of tea,but if I put 6 bottles in front of him,it would become an issue,so a small full glass is buy his side all the time,going out I make sure drinks are put in freezer,so they keep cold.,it works for him.

Slim had 8 months on Claxane,recently started 40m of Claxane ,but it did not stop him getting a clot in his artery?????,So now on 100m talking about changing to new drug!!!!,I read an article that low platelets tend to thicken causing clots,so will have to do some research as Slims Platelets were 37 at time of clot .he injects himself 2 inches from navel either side working out ward,he does not rub his stomach ,every morning I moisturiser this area as well as any pressure points,it does help as Slim is by nature slim and at one point hit 60k. although no appetite ,a little and often in food and drink.

I think you will find hospital,s vary in there opinions,you can help yourself!! I make sure that Slim has 2bananas daily for potassium ,plus a mixture of nuts and fruit for magnesium ,I use to do meat and veg,but quickly went off fish and veg and heavy meats as he has been sick eating these,so put him off the food,but he will eat scrabbled egg and salmon ,once I gave him what he fancied the weight crept up slowly and now weighs 71.6 k.

My attitude is as long as he eats and drinks,also makes life easier,this bxxxxxxxy Myeloma is hard enough,plus all the pit falls along the way. Eve

[appleParticipant]

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.

[eveParticipant]

Hi Philip

Kidney,s to us is the danger as Slim was admitted with AKF but his kidney,s have regenerated so lucky there!!,but when he went to Kings in London,he found he had added complications with his liver,but for a man who has always loved his G&T plus wine,he totally went tea total over night,his body no longer likes the booze,.I think this is we're listening to your body comes in to play,it has always worked for us.

Also if I am in doubt about Slim at any time,I will question it,for example had SCT and after 6 months,I wanted another BMB done,the consultant said this is not normal,my attitude is Slimi is not normal,as no longer shows in blood. So I take the attitude prove my wrong,it had come back,no symptoms just gut instincts .

They may be experts in the field,I am an expert on Slim,very protective of him,it is a battle some times occasionally I get a bit of approval ,Dai would say I do not suffer fools gladly ,but I just want the best for Slim,and will fight his corner.
When you end up in hospital you have to remember ,not many know what Myeloma is!!!! And from being a complete novice 2 1/2 years later,you have gained an awful lot of knowledge.

CDR has worked for many on here,Slim is now on that as well but as third line treatment, had CDT then CDV then SCT,all considered failed,so third line treatment is CDR. With BMB every 2 months,the sad fact is what works for one person,does not mean,it will work for another person.

I hope you will be one of the lucky ones,many people sail through treatment,just try to do something positive every day,don,t sit there thinking have I drank enough liquid,its listening to your body that will get you through this,any doubts about anything,get it checked out,leave your dignity outside the door and pick it up on the way out. Eve

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