Hi Sue

I'm Ali, its my Mum with MM.

I'm sorry to hear you are having such awful side effects.

Just a thought, my mum was severely allergic to the cotrimoxazole. When she stopped taking that she was much better. It's quite common to be allergic I think. As soon as she stopped taking it she felt much better. (It's the Mon Thurs one isn't…[Read more]

Hi,

Hope everyone is on the mend now. My Mums in hospital with it :-(. Being stuffed full of iv antibiotics.

When (if) the warm weather arrives, will the risk of chest infections decrease?

Love Ali x

Hi Helen

This seems like good news, no new treatment yet and not a definate relapse:-) I'm really happy for you. Just sorry you have to wait for the results:-/

What's happening with the parking space? Have you lost it for good? I can understand you not wanting to go, especially if you have far to walk before you even get to do your shift,…[Read more]

Hi Helen,

Just to let you know that I too have fingers crossed for good results, and you dont have to start any treatment for many a year:-)

Hi Vicky,

Yes, Mum still sometimes has a nod. She does try to resist though. I think sometimes she doesnt intend to nod, it just happens. (Funny, same happens to my hubby – though he has not got…[Read more]

Im back 🙂

Month 2 Mum had an awful, kind of allergic reaction, silmilar to your heat lumps but on a larger scale – she was given cetirizine to help and it did. Thought it was a reaction to the Vorinostat but its not happened since. Mum says she can cope with the side effects she is getting, fatigue and tummy troubles mainly (the tummy…[Read more]

Hi Phil

Its my Mum on the Rev/Vorinostat maintenance. She started in December last year. You are right, theres not many people on it as yet so its hard to get an understanding of side effects etc. We dont really get any answers from Mums consultant about Vorinostat, things are so unknown, but I guess thats why its a trial.

Im sorry to…[Read more]

Hi Vicky,

My mum still has days where she's really fatigued, not necessarily after shes done too much, just seemingly random attacks. We have started walking in the evenings now the weather is a little better and she can give me a run for my money so when she's having a good day its brilliant! I think the maintenance has a lot to do with the…[Read more]

Hi Andy

They are great results! Well done you!

/
Love Ali

Ps everyday is a gift, that's why they call it the present 🙂

Hi Eve and Slim

I'm so sorry its reared its ugly head so soon for you. Eve, I don't know you of course, but from all of your comments on here, I imagine you to be made of strong stuff, you will cope because you just have to.

I know things are very individual, but if Revlimid is to be the next treatment , my Mum didn't have many side…[Read more]

Hi Nicki

That's really good news. So encouraging for you both. Hope you both have a really good Easter weekend, don't over do the eggs!

Love Ali x

Hi Helen

Brrr its just a little cooler than Lanzarote 🙂

I too hope the treatment is a long way off for you.

Mums doing well at the moment, still getting used to the maintenace regime, had a few little blips but touch wood things are ok. She's not managed to get away yet, though she is going on a cruise in May. She was told she had to…[Read more]

Hi Babs

Happy (belated) birthday to you lovely stem cells.

Enjoy all of those holidays – you deserve them:-)

Love Ali x

Hi Helen

I just wanted to say hello 🙂

Im sorry to hear your numbers are rising. I hope you can put it to the back of your mind, maybe in a box – one with a sturdy padlock, until the time comes. I dont know how it works, but could it just be some form of blip?

Glad to hear you are feeling well though and the cough has gone!

And…[Read more]

Hi Ann and Pete

You will go from strength to strength now Pete. Try not to look at how far you have come on a daily basis. Leave it a week and you will be amazed at the progress week after week.

Vicky, its funny but I had labrynthitis last year and I'm sure it was stress related. Hope you are soon feeling yourself 🙂

Love Ali x

Ps…[Read more]

Hi Vicki

Nice to hear from you! How do you both feel about the No maintenance? I bet its lovely for Colin to be drug free. The curly hair? Lol I think its getting Mum down hers is so curly and so thick. Shes not had it cut yet.

In general my Mum is ok although shes really tired , especially the afternoon. I think its the Revlimid at…[Read more]

Hi Dai

I really hope you stay lurgy free. As Helen says you seem to have covered all bases.

This is a really tricky one isnt it? My son aged 9 said on Tuesday morning he had a tummy ache and felt ill. As Tuesday is a day I work I said there there you will be ok, off to school you go. Had it not been a work day I would have kept him off…[Read more]

Hi Jane

Sorry you are having a down day, I feel you have every right to one every so often.

My Mum was so worried about losing her hair, this didnt happen until she had her high dose chemotherapy prior to Stem Cell Transplant. When it happened she had "got her head round it". So im sure you will have several months to sort a wig out. She…[Read more]

Hi Jane

My name is Alison, its my Mum with Myeloma. She was diagnosed November 2011,aged 57, none of the family had heard of it and it shook us all really hard. Fortunately we are a strong family and have muddled through and I truly believe we are closer for it:-)

Mum is now in remission after having her stem cell transplant in August…[Read more]

Dear Sue

I'm so sorry to hear of Michaels passing.

Love Ali xx

You two

Fantastic news. I'm thrilled for you. Sleep easy tonight x

Love Ali xx