[AliParticipant]

Hi Vicky

Im going to follow Helens protocol next time, Im not farting around pretending it will be ok (like it used to be:-( )

Do you know, I was just starting to feel a little easier, then I remember, and I could just cry.

Im sure Mum will have a fantastic time on holiday (armed with antibiotics), maybe you and Colin should start planning some time away? Time to forget a little and time to relax.

Love Ali

Helen – you are missing a treat, Tom in his onesie!

[AliParticipant]

Hi San

Hows your Mum doing? any nearer to coming home?

Hi Helen

Thanks for that. When Mums been ill before theres been times when Dads phoned in to the ward and they have said go in, other times hes had to phone emergency out of hours doctors, so never very sure! The thing is this last time my Dad was working nights and half way round the country, so I was "In charge". Im really mindful that Mum [b]does not [/b]want to go into hospital, so when her temperature went down, and after a conferance call/committee meeting with Dad, I was kind of relieved I didnt have to take her in! Of course, when she woke up with a temo of 39.7, we all realised she should have gone in. Im not pratting around next time though and will follow your protocol – thankyou 🙂

How are you doing? Chuffed you got your parking space back – how very dare they?!

Love Ali x

[AliParticipant]

Hi Vicky

Mum was discharged tea time yesterday. Shes still not well but shes now on oral antib's so able to come home. Shes got a chest infection. When her temp got to 39.7 Dad rushed her in.

What we dont understand is when to take action when she is unwell. I suppose its been brewing for a while….cold, cough and muzzy head. She felt bad enough Tuesday am to go to GP who gave anti biotics, then temp started to rise in the evening, then fall, then back up early hours Wed.

Think what im trying to say is should she just have bypassed the GP and gone straight to hospital? What does everyone else do?.

Holidays in 6 weeks or so, think shes abit worried as shes going for 17 days. This is the 2nd hospital stay this year and I think its knocked Mums confidence. Just as shes starting to feel better shes back in hospital again.

Hope Colins pain relief gets sorted Vicky. I do so understand the worry of it all. Has he slowed down a little at work?.

Love Ali x

[AliParticipant]

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 it?)

Sorry to be brief I am on the school run!;

Love Ali x

[AliParticipant]

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

[AliParticipant]

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, the stress of finding parking also awful. I feel for you about it.

When's cornwall?

mums also got a lot of back pain at the mo

Love Ali x

[AliParticipant]

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 the same excuse;-) ) Its been 8 months since Mums SCT and she says this is the best she has felt in a long long time. As I said she still has days where she cant be bothered to do much, so she doesnt do much. Then other days she is raring to go.

Im sure Colin just needs to slow down a little and listen to his body.

How are you now after you labrythitis – has it gone?

Love Ali x

[AliParticipant]

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 troubles I think are due to the Revlimid, as she had this on her frontline treatment).

I do know that Babs on here was also on this treatment but she has been pulled off the Vorinostat as it did not agree with her – hopefully she will come along and add to this thread.

BMB at 6 months after commencing maintenance therapy isnt it?

Funny about your moustache growth – fortunately Mum does NOT have that problem:-)

Please keep us informed on how you are doing

Take care

Love Ali

[AliParticipant]

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 hear you are having probs with you neutophils. My Mum is one of those patients who does not want to know the facts and figures, so each time we have been to see her consultant we have just been told everything is within "normal" range – I hope that if she were neutropenic we would have been told!

Will carry on later as she has just arrived for her tea!

Love Ali

[AliParticipant]

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 tiredness, after all its still chemotherapy isn't it? She's looking forward to her cruise next month 🙂 still got mega curly hair, my brother asked her last week if shed had perm lol. She's having her first cut on Friday, she's really nervous about it. We are off for her monthly check and to pick up her bag of meds tomorrow.

Maybe Colins overdoing it abit, but I admire his get up and go. I know what you mean about being nervy, mums had an aching back for a week or so and you can't help thinking can you?

I will say goodnight now

Love Ali x

[AliParticipant]

Hi Andy

They are great results! Well done you!

/
Love Ali

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

[AliParticipant]

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 effects.

Look after yourselves

Love Ali x

[AliParticipant]

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

[AliParticipant]

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 wait until she had been vaccinated, on her 2nd doses she had a terrible allergic reaction and spent a few days as an impatient on iv antibiotucs and with cellulitis. They have now abandoned the vaccination plan!

No plans for over the easter hols. My hubby is only off Easter Sunday and the weather doesn't look all that promising. Big family get together at Mums on Friday which I'm looking forward to. What are you up to? .

Happy Easter

Love Ali x

[AliParticipant]

Hi Babs

Happy (belated) birthday to you lovely stem cells.

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

Love Ali x

[Author]

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