[AliParticipant]

Hi Everyone

Just thought id update you on my Mums progress since SCT in August.

Shes recovering really well, slowly but surely:-) Appetite back to normal. Problems with acid and sore mouth I told you about seem to have gone (reaching round for some wood to touch). Hair growing back nicely. We have got so much to be thankful for.

We went to see her consultant last week and were told shes in complete remission, with no detectable myeloma in her bone marrow:-D

Shes been randomised now to Revlimid and Vorinostat, which she is due to start soon. First she has to go on Warfarin as she developed 2 clots whilst on the Revlimid last time:-(

Its been the most awful year, and I would just like to thank you all for your support, advice and information. Got to pinch the saying "onwards and upwards" – thanks Tom.

Love and Hugs from Ali xx

[HelenParticipant]

Hi Ali
Good news for your mum and the rest of you, and hope side effects are few, I have just completed my first year on Revlimid since my SCT. I'm still improving even now.
Hope all this progress continues and life returns to a more even keel.
Love Helen (still coughing)

[EttaParticipant]

Hi Ali that's great news about your mum. I hope my news is the same I go on the 27 of this month for my 100 day results.
Then off to Oz on the 7th dec ,hope you and your family are all ok and here's to a better year.
Love Etta x

[GillParticipant]

So pleased to hear your news

Tip for sore mouth Corsodyl you can get mouthwash and if she can bare cleaning her teeth the toothpaste helps a great deal

Keep the good news coming Gillx

[jmsmythParticipant]

Hi Ali

I have been following your mums journey and over the moon to read your news. Long my the remission continue and I hope your mum enjoys every minute. It's also been hard on you so hope you can relax a bit and take it easy.

Love Jean x

[VickiParticipant]

Ali,

That's absolutely wonderful news, good on you all, especially mum for doing all the hard work! So pleased to hear things are slowly and surely improving. Including the hair…..is a new style in order? Very best wishes to you all. This will be a good Christmas for you all…..best present ever, mum on the mend 🙂

Vicki

Ps Colin might hopefully be coming home sometime this week 🙂

[meganjaneParticipant]

Hi Ali,

That is wonderful news about your Mom, a great way to end what has been a long and tough year for you all. My husband Phil will be having his stem cell transplant just in time for Christmas but we are looking forward to a better year in 2013:-)

Megan

[tomParticipant]

Well Done Ali's Mum 😀 Thats great news Ali, and yes its a hard year or tow to getting back to near normal but as your Mum health and strenth improves thats when you will say "Well that was worth it" and I hope thats not too far away now 😎

The "Onwards and Upwards" is not mine to give 🙁 but its certanly yours and your Mums to take 😎 well done again.

Love to you both from one "Onwards and Upwards" to two "Onwards and upwards Folk"
Tom xxxx

[BabsParticipant]

Hi Ali,
I, like your mum have been randomised to Revlimid and Vorinostat but I also take daily aspirin, I started mine on Saturday 17th November.
I had my SCT on 22nd March this year and although I still have 2 to 3 % cancer cells in my bone marrow, which are currently dormant so I am said to be in "full partial remission",
My hair has grown back quite a lot and is extreemly curly! Two shades lighter and looks like I have had it highlighted, the things chemo can do to us!
I had been infection free till I got toncilitus on 11th October for which I was given antibiotics which cleared it up, unfortunatly the antibiotics then left me feeling very unwell for the next two weeks,my appetie dropped away and I lost 9 lbs in weight. ( as we had been advised we rang our local hospital ward but as I had normal temperature they said to ring my GP, he just said due to my cancer we knew it would take longer for me to get over infections, I then saw another GP at my surgery who gave me good examination and when he felt my stomach I yelled with the discomfort, he advised me to take lopramazole, this I did but there was no improvement in my condition, after two weeks my husband in desperation rang the trials team and spoke to their senior nurse,I was going in for my 4 weekly Zometa so she said while I was there she would get their Dr to see me, between the Dr and this senior nurse they diagnosed cadidia in my stomach and throat and I was given two weeks supply of Fluconazole). I am now almost back to my previously good health but am amazed how quickly my stamia has fallen away.
Good news on your mums progress.
Babs

[DizzylizParticipant]

Hi Ali,

What great news for you, your mum and all the family! So pleased for you all.

Love liz xx

[AliParticipant]

Thanks guys for your well wishes, I really appreciate them and if my Mum would ever drop in here so would she. Although I do read her snippets occasionally:-)

Helen, surely that cough is due to go soon? Did you say you expect it to be gone for Christmas? I do hope so. ) Bet you have strong abs from all the coughing though, must be very tiresome now though.

Etta, yes I too hope you're results are as good. How are you feeling now? Bet you are excited for Oz seeing your family (Bit jealous to be honest! we lived on the goldcoast for a year before the children arrived – seemed funny to write my xmas cards in my bikini) Keep us informed re your results/randomisation if you can.

Gill, thanks for the Corsodyl tip. Mums ulcers are tons better now, but they are a usual ailment so I will tell her to get some in, just in case.

Jean, thankyou. We are going away for a few days over the xmas hols and intend to enjoy (unlike last year).

Vicki and Colin, Home stretch for Colin now, you will be so relieved. Dont know about the new hairstyle just yet, shes so proud of it though, its quite thick but not much length yet. We have decided not to go to town on prezzies this year, its family thats important:-) Looking forward to hearing that Colin is home.

Megan, has Phil got his date yet for SCT?. Yes just think this time next year it will all be behind you.

Tom, what can I say? You are lovely:-D

Babs, How are you feeling on the new treatment ( I know its early days yet ) Im sorry you got the dreaded toncilitis, its awful at the best of times. Hope you are fighting fit soon. Will you let us know how you are getting on?

Liz, I replied to your post!

Phew!

Love Ali x

[meganjaneParticipant]

Hi Ali,

Phil is due to have his cells harvested on December 5th and will then go into St Bart's in London on December 17th for the transplant. Not quite the Christmas we would normally have but MM has never seemed too concerned with our plans:-D

Our view is get it done and dusted and then bring on the New Year and start fresh. Here's to 2013 🙂

Megan

[AliParticipant]

Hi babs

Just checking to see how you are doing on your new maintenance regime.

Love Ali xx

[BabsParticipant]

Hi Ali,
As I said only just started on Saturday but Monday, Tuesday and Wednesday I had really itchy head, drove me to distraction and thankfully now stopped, I have also had one bout of the dreaded constipation followed by tremendous stomach ache then very loose motion all in about two hours, (sorry for be so graphic but don't know how else to tell you.)
Having read the paper work the tablets can cause these, I am also finding it really difficult to drink the suggested 8 glasses of water a day, I have resorted to warm water which is easier in this cold weather than cold.
I have also found actually taking the Revlimid capsules have been making me reach so am not enjoying breakfast time but hopefully this is just me worrying about taking them and I will soon get over it.
Has your mum started her course yet and if so how is she doing?
Love Babs.

[HelenParticipant]

Dear Ali and Babs
I'm just back from weekend away, Peebles this time. Very cold and crisp.
Anyway, I've now had a year on the Revlimid as maintenance and I just thought I'd put in my 2p worth on the time of day for taking it. Because it makes me very tired about an hour after I've taken it, I find it much better to take it at about 7-8 pm , that way I can have a couple of glasses of water or tea and not be up all night either. :-/ As for the tummy problems Babs, it does settle down, eventually! 😛 I find a diet of many vegetables and much fruit is the only option now, and definitely warm water is easier to swallow in large volume.
Hope this helps and how is your mum Ali?
Love Helen ( still coughing)

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