[andygParticipant]

Hi Sarah
I was told to avoid certain foods too. I even think there’s a list on the MyelomaUK site of foods to avoid. As you say it’s pretty much the same advice given to pregnant women. Ie no live foods no unwashed or unpeeled fruit and veg and sea food is best avoided. The advice is given because we MMers have low immunities and a stomach bug is a serious problem to us.
It’s ok saying I continue to eat normally and nothing has happened to me BUT if you do come across some “bad” food the consequences could be dire! Everyone is different some choose to play Russian roulette with their health ie smoke, drink excessively, do drugs and get away with it others don’t and get struck down. For me I follow the advice I’ve been given on food because MM is bad enough without taking unnecessary risks.
With MM you don’t normally die of MM but of infections.
Rant over 😉

Every day is a gift
Make the most of them

Andy xx

[hikernickParticipant]

Andy,

I don’t think I’m playing Russsian roulette with my health, and I’m not sure that kind of emotive language is helpful. I don’t tend to eat much in the way of seafood etc. that carries high risk anyway. I just wanted to put the other side of the coin for Sarah who had been warned about a great long list of foods, and wanted to know if others had received the same advice. It turns out some have, some haven’t. So the medical advice is not entirely consistent either.

MMers have low immune systems while the chemo drugs are depressing them, but that goes in cycles with the drugs. The rest of the time our immune system is as measured by our blood counts. I’ve always had a robust approach to food, and a very strong immune system. I was brought up before antibacterial wipes etc. were ever even imagined. I’m just extending my philosophy into my treatment time, that’s all. More careful, but not paranoid.

Trust me, I’m not treating my MM lightly either.

The Myeloma UK diet infosheet is here: http://www.myeloma.org.uk/information/myeloma-uk-publications-list/living-well-with-myeloma/diet-and-nutrition-infosheet/

Regards

Nick

• This reply was modified 10 years, 10 months ago by  hikernick.

[hikernickParticipant]

The infosheet is here: http://www.myeloma.org.uk/information/myeloma-uk-publications-list/living-well-with-myeloma/diet-and-nutrition-infosheet/

Nick

[eveParticipant]

Hi Andy

Well do you feel,you have had your hand slapped!! Lol

Andy after all these years on this site and your countless experiences of so many,many different chemo,and people with different opinions and approaches!!!

Hope you intend to go out for Sunday lunch and enjoy a pint of real ale,treat it the same way as the BT .lol.

As for infections,and food plus advice on what to eat and what not to eat,it comes down to common sense,plus learning as much as you can,then tearing up the text book and just being grateful that the person is enjoying what every they choose to eat!!

Hospital advice differs from one hospital to another,and this subject has been taken very personal,on more than one occasion on this site!!and I am sure no personal affront was intended.
It’s rather sad,when opinions are taken out of context. Eve

[jmsmythParticipant]

Hi Sarah

Frank had his SRCT in Belfast City Hospital in March. He was also told of all the same things not to eat. Just like a pregnant woman’s diet. I was not allowed to bring him packaged sandwich from the hospital shop. The thing he missed the most was farmhouse pate. Like Megan I used bacterial wipes on every surface. I drove my grand daughter mad as I wiped the trolley at the supermarket (actually still do) and everyone who were well that visited him at home had to use antiseptic hand wash. I think that I took it too far as even now I won’t use shop door handles, push lift buttons with my finger etc

• This reply was modified 10 years, 10 months ago by  jmsmyth.

[jmsmythParticipant]

Sorry Sarah site playing up again or my IPad is. Part of the post was missing and wouldn’t let me correct my mistakes. But anyway I wish you and M the very best
Love Jean x

[Ang287Participant]

Hi Sal
Sorry to hear your husband has been recently diagnosed and is at present in hospital. I hope he is home soon.
My husband was diagnosed in May at the age of 55 following 5 months of really bad bag pain which was getting worse. He had fractures in his spine and had really bad back pain which eased after a couple of months of chemo. He has now had the 6 months chemo and the the removal of stem cells (which took 3 days) and is due to go in for his SCT in 2 weeks. Since coming off his chemo his taste buds have improved and he can enjoy the taste of bacon again. I am now making him food that he really enjoys before he goes in and as his favourite is a biryani. He had a lamb biryani and naan bread last night from his favourite takeaway and really enjoyed it. We were unaware that there were foods he should avoid so he has been lucky in a way as he has just eaten what he has wanted to eat with no side effects. We know he will be having “clean” foods when in hospital but have no idea what these are so when he goes to sign consent form this Tuesday we will ask then. The 6 months have flown by very quickly and he has been able to carry on working part-time and also working from home and I have carried on full time but have saved my holidays for when he is in hospital soon and for when he comes home.
We have done things as normally as able since his diagnosis once his back pain started subsiding with regularly going out socialising with friends, going to karaoke’s where he likes to sing and we even made a family Christmas video at a recording studio at Christmas which was a treat for all the family from our youngest daughter which was really good fun – the sound of it is awful though!
I find out as much as I can about the disease and Graham regularly asks me to research things as he is too scared to google anything. This website is brilliant and we have been told to keep to this and go on websites where things may be out of date as things have changed so much in the last 10 years.
Best wishes to you both,
Angela
I hope your husband is home soon

[HelenParticipant]

Well it’s all very interesting….. We were not given any dietary advice … In fact were told there is no evidence to suggest that there is any problem with any foods as gastric acids continue to do their job!
I have eaten anything I liked or felt like eating since day 1, nearly 3 years ago, I’ve had induction chemo, SCT, relapse and second lot of chemo and though I’ve had a lot of infections in the time, I’ve never had food poisoning.
I just smell stuff first and decide if I want to eat it!
Helen

[mhnevillParticipant]

Hi Sarah

Welcome from me. I have been having trouble getting on site lately and am only just catching up.

I came into MM the same way as M, but fortunately with no break to complicate things -only the caging in my back. I had a further trauma a year later when I again lost mobility. That’s when I starter on chemotherapy, CDT. Fortunately I got into remission after six lots.

I got no direction about food, BUT I found I lost my appetite because I had a horrible metallic taste.

I had a fever after my first lot of Zometa, but I have only had it once since and I have been on it for well over two years. at the time of starting chemo I was full of lyric lessions, including in my head(!) and my Consultant was very worried I would get stress fractures, but I haven’t. I’m sure that is down to the Zometer.

Getting your mobility back is a long haul, but the proper exercises do help. I am much older than M, but I rely on crutches when out, for very short distances, but had an electric scooter, that goes into the car boot, to give me mor freedom. We have even taken it abroad. (Free on the plane!)

They do now seem to be using Velcade as front line drug. Supposed to be very good for those going to have a SCT. Is that the idea for M? Do take heed to the advice folk give about neuropophy. My husband has it as a result of diabetes and, if it gets bad, it can be very debilertating.

Very best wishes to you both.

Mavis x

[SalParticipant]

Hello everyone!

Thanks so much for your replies and for telling me about your experiences Andy, Nick, Eve, Jean, Angela, Helen and Mavis. I really appreciate your help and good wishes. Angela – it really cheered me up to think of you going out and having a good time and enjoying life – particularly the karaoke. It has helped me to feel less neurotic to know that some of you haven’t been given any advice about food and that you’ve all found your own ways of dealing with it. Maybe  I don’t have to be Mary Poppins (practically perfect in every way!)!

M is still in hospital. He had his first chemo on Friday and has felt grotty since then.  He should be able to come home as soon as the occupational therapists have sorted a few things out – like how he can get in and out of bed and up from chairs and the loo! Someone is supposed to phone me to arrange to come round in the morning but I’ve heard nothing. It’ll be a bit embarrassing showing them round the house as it’s in a bit of a state. I’m not a domestic goddess and I’ve somewhat neglected the tidying and cleaning recently. Fortunately M’s mum is coming at the weekend and she loves ironing, so my enormous piles of un-ironed clothes should keep her happy for a while.

Mavis – no-one has talked to us about SCT yet. He was only diagnosed on 2 January and the focus has been on pain management and getting the chemo started. It’s probably best for M not to have to deal with any more than one day at a time right now, so if I ask any questions about it I’ll do it when I’m not with him. I’m usually someone who plans things and has all sorts of things worked out. As far as dealing with Mark’s illness, though, I don’t actually want to deal with more than one step at a time.

Thanks again everyone. It is so helpful to have your help with my questions.

Sarah

[SalParticipant]

Well – M is home at last. Now I have to get to grips with things on a practical level, but I think we can relax a bit more in our own home, even though he did have excellent treatment in hospital and his pain is now under control. The big bottle of handwash is by the front door for anyone who visits, and we are now equipped with raised loo seats, a handle to help him get out of bed, and a couple of grab handles should be fitted on Monday or Tuesday.

M is currently working on a spreadsheet so that we can record all his drugs, when to take them, and when he has taken them. He had his second dose of chemo today and seems ok at the moment, but we know that it gets worse for many people as you go through the cycles. We have also got a patient diary which we will begin to fill in.

So here we go for our first weekend at home post-diagnosis.

Hope you all have a peaceful weekend, whatever the weather.

Sarah

[hikernickParticipant]

Have a great weekend together!

[Ang287Participant]

Glad to hear M is home. Your husband’s spreadsheet takes me back to last May when my husband came home with 2 carrier bags full of drugs ready to start his treatment last May. He is an IT teacher so the first thing he did was make himself a spreadsheet and I went out and bought him a flat screw box that had different sized compartments in it for various sized screws and nails in it with qa see through lid and he labelled up about 7 compartments for different times of the day when he had to take his tablets. Some days it had 44 tablets in it! Filling it for the next day was his last job of the day and I always worried in case he felt to ill to fill it but he took control of it for the full 6 months of his chemo and it worked well. I wanted to buy 7 of these boxes so we had them ready for the full week but my husband said one was enough.
He also filled in a diary and if he had a bad day he would look back to see how he felt on that day of the cycle the previous month and he could see that things were gradually improving when reading back to the previous month. The time flew to be honest and now just a week off stem cell transplant. We are out for a night out with friends tonight as it might be a while before we will be visiting a bar again 🙂
Have a good weekend
Angela

[SalParticipant]

Thanks Nick!

Angela – hope you have a lovely weekend that will keep you going for  the weeks ahead. Time spent with friends and family is precious and time well spent. Hope you have lots of laughs.

Sarah

[bandityogaParticipant]

Hi Sarah

It will be good to have your husband home. Ian is now walking with sticks and getting stronger. We got a grant for a wet room with hand rails. He also has a riser recline chair, Comdex also used in the shower and a hospital bed. Speak to your social worker if you need anything.

Maureen x

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