[HelenParticipant]

Hi Ali
Thank you, I like to think we girls scrub up ok when the fancy takes us! We were at a wedding so pushed the boat out a bit, it was so lovely, but way too close to Christmas (22 nd). I hope you and the family had a good time? Less worry this year?
Re the Revlimid, my relationship with food has been poor since starting it. I have lost my old sense of taste and smell and quickly feel full when I eat. I also find fruit and veg more palatable than anything else, no idea why. I'm finding the first 2 weeks of the cycle the best and things tail off badly in the 3 rd week of the cycle, then I stop, get better again and start all over. I am so much better though, even though not as I was, I'm continuing with it fairly optimistically, still on the higher dose of 25 mg.
Dear Carmen I hope you continue on watch and wait for a long time, as you see I probably had several years of smouldering before a reason for the anaemia was found.
Love Helen

[AliParticipant]

Hi Helen,

Thanks for that. Mum has found that week 4 (no meds) she can eat normally. Its just getting used to the change and adjusting as required I suppose. Mums on 10mg of Revlimid I spotted today as well as the Vorinostat.

We has a wonderful Christmas this year thankyou – my 9 year, when asked what he would like for Christmas said "I would be happy with just a box of chocolates, id rather have my family" . How true is that?.

Any hols booked yet for 2013?

Love Ali x

[HelenParticipant]

Hi Ali
A impressive response from a 9 year old, they can be so astute when they want to can't they? I'm on my week off Revlimid and feel much more like eating again, now catching up on the advent calendar and the Christmas chocolate that I couldn't face at Christmas!
One thing I do notice is when I'm about to get an infection, I don't feel like eating much, so it might be a warning sign of sorts too.
No holidays planned yet, but looking at things for March!
Love Helen

[AliParticipant]

Hi

I have eaten all of my chocs and biscuits very quickly this year, once they are gone I can start with the healthier eating (well that is the plan anyway)and its safe to say I dont think I can cram anything else in, im craving a salad!

Funny you should say about infection, Mum spent last Sat evening in a&e, high temp 38.5 and no signs of coming down whilst at home even after the usual paracetamol. Was advised to go in to be checked over and released at 2am. Temperature went back to normal. She has had a nasty cough/cold for some weeks now and 1 lot of antibiotics.

Mum starts her immunisations later this month, so she is getting closer to being able to go abroad.

Thanks for replying

Love Ali x

[VickiParticipant]

Hi Ali and Helen,

Glad to hear you both had good Christmases! How right your 9 year old is Ali! Sorry to hear your mum had a hospital visit. How's she doing now?

We had a good Christmas and new year too which was surprising given that Colin's dad passed away just before Christmas. What I was wondering is that Colin has been doing really well, his hair is growing back quite quick, can't get used to it! However just before Christmas he has a real feeling of fatigue and a bit of tummy trouble, sniffy nose and a bit of a cough, we went to hospital and he got tamiflu and antibiotics which cleared it up. What I'm getting to sorry for long story…. This last week we had Colin's dads funeral Tuesday (long day), Wednesday he went to have bloods done at hospital and then call in to see a friend who'd been in hospital (out most of the day), Thursday had to do some stuff for Colin's mum and then by the afternoon felt very fatigued, tummy a bit upset but nothing else no temperature etc. but he had been asleep last night from7pm and then on and off all day today. . Is that the normal fatigue following sct or is there something else we should be watching for? Is it me worrying too much?

Happy belated new year to you both x

Vicki

[AliParticipant]

Hi Vicki

Im sorry to hear about Colins Dad:-( But im extremely pleased you had a nice Christmas and New Year.

It does seem that Colin may be overdoing things? You have had a few really busy and long days and hopefully he is just catching up on some rest. You are bound to worry Vicki. Main thing, I think, is no temperature. If you are still feeling uneasy sometimes its best to phone in for advice? Does Colin feel unwell?

I know that Mum still gets tired, and its only just the past month or so she has not felt like a nod in the afternoon. She has had the dreaded cough/cold since before Christmas and cant seem to shake it. I have told her to keep away from A&E tonight!

As for hair – well Mums has a mind of its own! Its so curly and its really thick. She doesnt need the wig anymore, just puts on a hat when she goes outside for warmth. My brother said she hair like Judy Dench the other day!

When is Colin due to be randomised?

Love Ali xx

[VickiParticipant]

Hi Ali,

Glad all is well. Colin's hair is really soft and fluffy. Someone recommended almond oil to rub in to get better quality hair? Ref your mums hair, judi dench style isn't too bad is it? Curly…that would be Colin's nightmare. Like your mum he has a selection of hats to wear out in this cold weather. He got an ear infection a while ago so it's pulled well down over his ears, which he hates! 🙂

I think Colin has been overdoing it but when he feels so well it's hard to stop him. He has gone from feeling as bright as a button to very very tired with just a hint of an upset tummy and a few gripes. Before Christmas it was the same but he had a cough and cold then too. His temperature has remained really static at 36.7 so much so I thought the thermometer had broken! The trouble is I've been so used to us going to hospital that at the merest hint of something I want us to go to hospital. What I'm not sure about is whether you have to go to hospital or to a Gp if there are no temperatures? He has an appointment with the sct nurse tomorrow so hopefully we will know more then if nothing else flares up! Hope not as it speaks of heavy snow down here later on tonight!

Have a great weekend and I hope your mum continues to improve x and looking forward to those holidays abroad ( I can't imagine that at the moment, we were too worried to go up and and stay in leamington spa overnight for Colin's dads service in case we had to go to the hospital! Hope it comes with confidence 🙂

Vicki

[andygParticipant]

Hi Helen.
Just seen the photo you posted 😀 looking good.
Hopefully you are feeling good too and had a good Christmas and new year.
I see you are having trouble with food re Revlamid I don't find it a problem. I have a problem with cyclophosphamide putting me off food and making me feel nauseous. I have 3 courses of cyclo. per cycle and my taste gradually improves after the 3rd until I start my next cycle. Of course this could all be relative and the Revlamid could be affecting my taste but not as nearly as bad as the cyclophosphamide.
As to holidays Steph and I have booked to go the the lakes in march and are talking about maybe going to Belgium in April and hopefully get to go to Greece May/June time. If everything goes our way 😉
Right I'm going to try and sleep now if Dex will allow me.
Take care.
Love Andy & Steph xx

Ps when the weather improves we'll have to arrange to meet up for a coffee and a good old chinwag 😉

[tomParticipant]

Hi All

Well who has put a Great Photo on 😀 you both Look great and yep you scrub up real well (not that either of you need to )

Love iccle ole me xxx

[EvaParticipant]

Dear Helen,
I'm very pleased you're doing so well and that you have acces to maintenance.
Hope you're stable for a long while,
Eva

[HelenParticipant]

Hi Ali and Vikki
This infection lark is a nuisance, I'm so grumpy just before the next one rears its ugly head, and sadly I never realise until its on top of me. I'm beginning to see a pattern here, when I do lots and lots of stuff, then rest a bit more – then I seem to pick things up. Had a lovely christmas then a cold, now conjunctivitis and a perforated ear drum, and the cough getting worse again too. All swabs negative 'its just a virus', so lots of early nights again for me. Hope the service went well Vikki, not an easy thing with all that you've been going through recently.

Andy it's good to know you are getting the priorities right and booking up all the holidays, just leave one or 2 for the rest of us eh 🙂 and yes a little trip out for coffee would be good, when the snow has let go it's grip. I was never sure at the beginning of my treatment what made my tastes change, I was on RCD for induction, but now I'm sure it's the Revlimid that caused the trouble, I can't taste or smell very much of anything now. Makes food rather boring!

Tom and Eva thank you very much………. And the occasional scrubbing up is quite fun! My daughter and I had a great time choosing the frocks, hubby not so keen on the pain in his wallet;-) but we're worth it…!
Love Helen

[VickiParticipant]

Hi all,

Helen, thanks all went well and at least Colin was able to go! Sorry to hear you've been feeling so rough on and off. It's the time of year for it. I read one of your other posts about being angry you have this mm….it's hard not too isn't it as life seems a constant battle. Still as long as we are battling, we are here so that's good :-). We are snowed in at the moment. One good thing, not sure if anyone else has been offered complimentary therapy?. Colin has been offered qi gong(like tai chi), reflexology, aromatherapy, a course for 3 days on holistic whole life therapy and physio. We were gobsmacked….I can go as well and it's free…..wow! Colin has his bone marrow assessment next Thursday, weather permitting. It's scary as well know how successful it's been, so fingers crossed for us. Hope you are feeling better soon, I suppose it's better to do stuff and get a bug than doing nothing at all? Take care.

Hi Andy, glad to hear from you, wondered where you'd been. Glad to see you've got some stuff planned and hope you are feeling well. Our update is above. Take care and enjoy your planned breaks, stay warm and well 🙂

Vicki and Colin x

[sharonboyleParticipant]

Hi
My name is Sharon and i am caing for my mum who has recently started CDT for her myeloma after 3 years smouldering this is near the end of her third week.
The terrible thing is she was well at 69 years of age and had no symptoms it was just her para protein that went from 19 to 29 then had bone marrow to confirm treat was neccessary. Since starting treatment however she has had lots of symptoms mainly bone pain in arms legs and neck and i am just wondering if this is common she is good on steroid days with hardly any pain but after 2 days off the pain comes so i am not sure if this is the treatment doing its job or its not working and disease getting worse, we have hospital on thur for second lot of meds but any advice would be appreciated

[HelenParticipant]

Hi Sharon
It is normal for all sorts of arthritic pain to disappear when you are on steroids, but I think you should mention the pain at the next appointment – if there is bone dammage, it is something they need to keep an eye on. And adequate pain control could be started.
Love Helen

[Author]

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