[AliParticipant]

Hi Eve,

Yes, have a wonderful time away, you both deserve it:-)

Love Ali x

[AliParticipant]

Hi

My Mum was definately more tired towards the end of RCD, the treatment was not quite as hard as Mum feared. Once she gets her head around something she has the attitude of "whatever it takes" and im so grateful for that. Yes, she had her down days and im sure many more that I am not aware of. She had pnuemonia and was in hospital for that whilst on treatment and developed 2 clots during initial treatment, but she got through it:-)

My Mums doing really well now, in complete remission and building up strength now after SCT. Awaiting her maintenance treatment. I hope your partner regains some strength before SCT. It will be tough on you to, so remember to look after yourself too.

Love Ali x

[AliParticipant]

Hi Keith

Im with the others – Good luck to you

Love Ali x

[AliParticipant]

Hi Jacqui

My Mum is on this trial. She had 6 cycles of RCD (was going to be 5 but her consultant wanted to try 1 more). Her last cycle was April this year and then went on to have SCT at the beginning of August. I think it just depends on when the pps plateau or best of all go to 0. Mum stayed at <2 for 2 months so the they decided it was time for SCT. Shes now been randomised for Revlimid and Vorinostat as maintenance. I hope this helps you.

Love Ali x

[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

[AliParticipant]

Hi Liz and Kev

Im really sorry to hear that Kevs been having a tough time of it. Hope the rev/dex gets things under control again very quickly. I know what you mean about this forum being a godsend. Its just nice to know there is someone out there understands what you are going through, whether you are the patient or the watcher.

Love to you both Ali x

[AliParticipant]

Hi Karen

My name is Ali and its my Mum with MM – shes 58 and was diagnosed last November. Mum was on RCD for 6 cycles and then had her SCT at Nottingham City under Prof Russell in August this year. As Dai says the whole team there are brilliant, and you will be looked after well.. She was told last week that she is in complete remission and has no detectable myeloma in her bone marrow:-D . Its been a shite year for us all as a family (sorry for the swear guys) but you will get through it, and as our friend Tom would say its "onwards and upwards".

Love Ali x

[AliParticipant]

Hi Chris

You have done so well, fantastic that you are home and seem in such good spirits. Dallas, well I didn't expect her to be ken Barnes daughter did you?. Keep taking it easy though.

Love Ali x

[AliParticipant]

Hi Vicki and Colin

My Mum was still quite ill from both ends (if you know what I mean) when they let her home. So as Tom said they must think its possible for the weekend. Its the homestretch now, nearly done:-)

Love Ali xx

[AliParticipant]

Hi Eric

Im Alison, its my Mum with MM. Shes having the same sort of worries as you at the moment. She too is on Myeloma 11 trial. Having completed 6 cycles of RCD and SCT Aug 2nd this year. She is just starting to feel "normal" again, or as close to it as she can:-) Shes now been randomised to Revlimid and Vorinostat.

Whilst on RCD she developed 2 clots and had to inject Clexane to prevent more. Both Revlimid and Vorinostat are known to cause clots so she now has to take Warfarin to be able to continue with the trial. Shes apprehensive about the Vorinostat, as again we go back to the fear of the unknown. She knows she can cope with the Revlimid, especially as this time it will be a lower dosage. I also know that she would have kind of felt cheated had she have been randomised to no maintenance, and (once she gets her head around it) will just get on with it. Going to see the consultant tomorrow, find out more hopefully.

Have you actually been randomised yet? How are you recovering after your SCT?

Ali x

[AliParticipant]

Hi Vicki,

On the home straight now, wont be long until Colins back home. Keep smiling 🙂

Love Ali xx

[AliParticipant]

Hi Vicki and Colin

Hope things are still going to plan. As Helen says try to stay cheery when you walk in the room, though its so hard. My Mum was pretty much the same as Helen. The second week especially I would walk out of the ward and burst into tears, its so awful to see your loved one in that way. But, when things were on the up she did seem to improve quite quickly:-)

Chin up, you can do it, you both can.

Love Alixx

Hi Helen, Hope you had a nice time despite the weather. Hows the whoop? are you feeling any better?

xx

[AliParticipant]

Hi Mavis

Well done you and thanks for sharing your good news. Enjoy.

Love Ali xx

[AliParticipant]

Hi Pat

Sorry to hear you are having a rough time of it, you have every right to have a moan here and there im sure.

Its my Mum with MM. Both her wedding ring and cross that she wears on a chain around her neck have tarnished unfortunately – both gold.

She got very shaky on the dex days, even her voice. We used to call them the "Larry the Lamb" days. Probably lasted for about 3 days each time. She too could drop off at any time during the day, but could not sleep all night – must have been frustrating. You sound alot like my Mum about being dependant on others – she hates it and refuses to be molecoddled (spelling?) unless absolutely necessary, which it was abit after her SCT:-(

All I can say is my Mum always said "whatever it takes", yes she had her down days and probably many more that Im not aware of;-) what im trying to say is that you will do it Pat, im sending you a big hug as you are so brave and I think you deserve it.

Love Ali xx

[AliParticipant]

Hi Tina

Welcome home:-)

All I can say is my Mum felt exactly the same as you when she came home. She got quite upset and down that she didnt seem to be making any progress. But little by little and week by week she got stronger. Things she used to eat before SCT she said felt all wrong in her mouth ie a sandwich. Wet foods were not appealing either such as a stew or spag bol. Once she found something she could eat she would have it every day! Shes eating all normal stuff now (3 months on) but perhaps not the same volume.

All clothing she wore in the hospital were thrown away when she got home, they were all an association with her hospital stay.

She also kept herself topped up with anti sickness, and if they are not working there are others you could try.

Keep at it Tina, like Eve says soon you will look back at this time and you will see how far you have come.

Love Ali xx

[Author]

Posts