[Fi2Participant]

This is my first post although I've been reading the forum avidly for a few months now. My dad was diagnosed with MM back in December, aged 64 and after getting through the 4/5 months of CTD is now in the Freeman hospital, Newcastle, having his first stem cell transplant.

I live a long way from my parents and have young kids so am not with him as much as I'd like to be at the moment. I was just wondering if anyone can give any practical tips regarding recovery? He should be home in a couple of weeks and I know he has to take it easy for a good few months to come, but if anyone has any advice then please pass it my way. I suppose what I find so hard to get my head around is that his immunity is now at an all time low but there doesn't seem to be much information out there about how to help built it up. Did anyone take any good vitamin/mineral formulas that they could recommend for example? If you're like my father, you'll raise your eyebrows at this question. He's sceptical about the benefits of nutritional and complementary therapies but I can't help thinking that it can't hurt!!

I realise that this is such an individual cancer and everyone responds differently to treatment etc. but any advice would be gratefully received.

I have found everyones posts so comforting over these past few months and even though my father is yet to visit the forum, I've found that it's answered a lot of questions that we as a family have been pondering.

Thank you everyone, wishing you all well,

Fi x

[jmsmythParticipant]

Hi Fi

Welcome to the forum. We are a friendly bunch and you wil get a lot of support. I hope your dad recovers quickly from the SCT and gets home quickly

My husband had his SCT 3 months ago and goes tomorrow for 100 day assessment. Fi I can only tell you what I did. The most important thing I think is to vet any visitor. We only allowed family to visit for the first 6 weeks (think that's what it was). They knew they were not to come anywhere near their dad if they as much as had a sniffle. Hand sanitizer was left at the door and they used it before seeing their dad. All surfaces In the house house were wiped down twice a day and after visitors (I was a bit paranoid). I asked the consultant if Frank could take anything to help build neutrophils and she said no. She said that his diet should be that of a pregnant women – no patty, soft cheese , no takeaways until the neutrophils rose. Frank also continued to use the mouth wash for some time after leaving hospital. It did take him some time to get appetite back and was very weak for some time. (Mind you he was a bit quicker in having a whiskey 🙂

There will be other people coming along and giving you their tips. Hope your dad has a smooth recovery

Love Jean x

[meganjaneParticipant]

Hi Fi,

Welcome to the forum. I hope your Dad is home soon from his SCT. I agree with everything Jean has said, my husband Phil had his transplant in December 2012 and we went one step further and had no visitors at all for the first month (our family do not live nearby so this was easy to do). I also cancelled a few meetings with friends as they thought they might be coming down with something and I didn't want to bring the germs home with me. It is a relatively short time you need to be really careful so even if your Dad feels a bit like a hermit at first once his blood counts recover the visitors can come. If your Dad is anything like Phil was he was too tired for visitors to start with so it is not such a hardship.

Frequent hand washing and, as Jean says, wiping down surfaces, door handles, light switches, etc is a good idea. Your Dad will go for quite frequent blood tests after he gets home so just keep an eye on the neutrophil count, once that starts to rise and get back to normal your Dad will be better able to fight off infections. Although Phil's neutrophils are now back at 3 I still have hand sanitizer all over the house and wipe down surfaces a couple of times a week.

For food you should be able to get a leaflet from the hospital about the neutropenic diet or call Ellen and Maggie on the Infoline for help. Basically all your Dad's food needs to be clean, well cooked and from reliable sources. Buy the pre packed meat instead of things from the Deli counter, avoid soft cheeses, have pasteurised juice, things like that. Phil did not take any extra supplements, we just tried to makes sure he had a healthy diet to go with the chocolate, Phil doesn't normally eat chocolate but almost from the start of treatment he craved it and this craving carried on until two months after his stem cell transplant but now it is gone, we think his body needed the calories/sugar 🙂

Good luck to your Dad.

Megan

[tonyfParticipant]

Hi Fi, wish your dad the very best of luck with his SCT. I had mine at the beginning of February this year. I was hospitalised for just under 3 weeks. It was quiet scary coming home after that amount of time being nursed and cared for. We were careful about having visitors, anyone with sniffles or coughs and colds were asked to stay away. My wife didn't get to paranoid about cleaning but there were lots of wipes around the house, keeping surfaces etc clean.
As far as food is concerned we were advised not to go for supplements, go for fresh foods, buy pre packed not stuff from the deli counter. Myeloma UK will give you lots of advice.
Like Megan's husband I went for the chocolate box! I drank loads, drank lots of blue top milk as well as water, not juices, they seemed to upset me.
I tried to get my life back to normal as quickly as I could, I started walking the dog after about 5/6 weeks, driving short distances and having visitors, providing they were not full of cold. Bit difficult with a young grandson but we managed.
Now my para protein levels are at 1.6, no more treatments, no more drugs. Have to have all of my baby jabs, but doctor said go out and enjoy life, see you in 2 months!
Hope your dad has a smooth ride.
Regards
Tony F

[HelenParticipant]

Hello Fi
I had my SCT at FRH, I think they seemed quite happy if you kept enough fluids going in( and out). When you get home there is no special advice other than sensible, freshly cooked and prepared, whatever you fancy food and lots of fluids, any sort. They weren't too keen on supplements, preferring you to listen to your body and trying what it seemed to call out for! They do not recommend the neutropaenic diet, as there is not enough evidence to suggest that there is a benefit and it is more important to keep trying stuff when nothing tastes very nice. Even 4 mouthfuls of anything that tastes wrong will help keep body and soul together. I can remember I gave things like black pudding a try for a few weeks, not something I'm ever likely to choose from a menu normally but if you are low on iron it does the trick, it's a bit like being pregnant, not that the chaps would understand that!
Lots of gentle exercise is good, half an hour walking a day if you can from about the third week was what I managed on most days to build up muscle again and just lots of peace and quiet interspersed with germ free visitors. Clean handles and clean hands on everything to reduce the chances of dad picking up opportunistic infection.
Love Helen

[Fi2Participant]

Thanks Tony,
My dad has had a real taste for the chocolate too!
It's great to hear from people who've had first hand experience of the SCT and I will let dad see your post when he gets out. My two girls 8 & 6 mean the world to him and I think that's going to be the hardest part, not seeing them as much as he'd like to over the coming months, but hopefully that can be rectified once he's feeling stronger.
Great news about your PP levels. Hope you enjoy your drug-free time ahead,
Thanks so much,
Fi

[Fi2Participant]

Thank you Jean,

It's great to hear from people who've had first-hand experience of the SCT and caring for the person with MM. My mum's pretty keen on house-work so I'm sure she'll take great pleasure in keeping the place spotless and germ-free! Good tip about the mouth wash, dad's mouth seems to be ok at present but he's only 1 week in. I'll give you all an update in a few months time.

Thanks for taking the time to reply, it means a lot,

Fi x

[Fi2Participant]

Thanks so much for your reply Megan, it's really helpful to hear everyone's tips. I know my dad won't like not having many visitors as he loves company but I'm also aware that he might not be feeling as sociable as he was prior to the SCT. It's going to be hard keeping him from his grandchildren for a while but hopefully once he's stronger we can get to see him more.

His love of chocolate was something to behold when he was on the CTD cycle, it will be interesting to see if this remains the same when he gets home.

Thanks so much for replying. It's great to know there's a community out there all going through similar things.

Good luck with everything and I'll give you all an update soon,

Fi x

[Fi2Participant]

Hi Helen

Great to hear from you and thanks for replying to my post. Good to know that you have positive things to say about FRH, my dad certainly seems very happy with his care so far and he'll love the Black pudding tip, one of his faves!! I'll let dad know about your visit this week and if he's in any fit state, I'm sure he'd love to see you.

Good luck with everything and thanks so much again,
Fi x

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