[AliParticipant]

Hi Jacqui

Yes, my Mum had her SCT 1st/2nd August. How are you feeling now? May I ask about your hair, has it made a re appearance yet? and if so could you describe it?

The Greek islands sound lovely, seems you have the same sort of idea as us. We just want a couple of weeks having fun in the sun, relaxing and being together:-).

Mum and Dad would have liked to go on a cruise over New year and when she asked her consultant thats when she said about the immunisations. Mums also booked in for her flu jab (having checked with the Consultant first).

Love Ali xx

[AliParticipant]

Hi Vicki

Thanks for listening to my little moans!

The immunisations are the childhood ones – like a newborn baby ( Polio , diptheria, tetanus and such like). Its funny as my baby nephew is having his at the moment! They are to start 4 months post SCT – so that will be December. Shes to have 1 set everymonth for 3 months. Her consultant was adamant not to travel abroad until shes had the full course, so of course Mum will do as she says.

Your holiday choices sound wonderful Vicki, we can all dream, and when Colins recovered from SCT – why not?:-) (after his jabs, of course!) I dont know if different hospitals give different advice?.

Hope you have a lovely weekend and Colin is feeling not so tired.

Love Ali xx

[AliParticipant]

Hi Vicki

Sounds like you had a lovely weekend, it will do you both good to get out and about. Stayed out til 10pm – you dirty stop outs! 🙂

Glad you have dates, and yes let us know when Colins collected all those lovely millions of cells.

My Mums doing really good thankyou, except for the mouth ulcers and burning acid. Shes on lots of different things to counter this but nothing seems to be working much. Her appetite is coming back and she has more energy now. Her hair seems to be making a tentative appearance again. Although she didnt lose her eyebrows completely they were very sparse after the cyclophospomide, and they seem to be sprutting abit. She goes to see her consultant in Nov for bone marrow biopsy and the randomisation for the next arm of the trial. Shes abit down at not being able to travel abroad until shes had her imunisations which will probably take her to next March/April 2013. I think her and Dad deserve a break, they had to cancel a Carribean cruise last Dec for my Dads 60th. We are looking forward to a big family holiday next year at some stage, which will be lovely:-)

Better go get ready now, Mum and I are off shopping after kids have gone to school (great to do normal things, we have always done grocery shopping on thurs am:-)

Good luck with it all you guys, im rooting for you!

Love Ali xx

[AliParticipant]

Hi Sarah

Thats just fantastic news:-)

Enjoy!

Love Ali xx

[AliParticipant]

Hi Chris

Enjoy the coast, hope the weather stays dry and sunny for you.

Maybe Pam left as she couldnt bare for Bobby to see her like that, but wasnt Ken her brother? there maybe some mention in the next episode! Lets hope.

Love Ali xx

[AliParticipant]

Hi Mari

Just wishing Steve all the best for his SCT and hope that it all runs smoothly from now on.

Dont apolologise for not being around! seems you have had alot going on. I hope everything is ok with your Dad now.

Love Ali xx

[AliParticipant]

Dear Cathy

That all sounds very positive news:-) Ivans had a rough ride hasnt he? with the added complication of the dialysis. I hope that he improves slowly but surely and he gets to come home soon, thats where he will get his strength back.

Thanks for posting – take care

Love Ali xx

[AliParticipant]

Hi Chris

I too have been pondering what happened to Pam so I looked it up on wikepedia and found this [b][i]Season 10 saw Pam leave Bobby after she was involved in a car crash which resulted in her suffering severe burns. She disappeared from the hospital and Bobby never saw her again[/i] [/b],cant wait for Ken Barnes' return too ( how very sad are we?):-)

Yes, rest and regroup for the next part of your journey.

Love Ali xx

[AliParticipant]

Hi Cathy

Just checking in to see how Ivans scan went? and how he is feeling.

I do hope you are taking care of yourself too, it can be very draining visiting hospital everyday. My dad found hed come home from visiting my Mum, then have to telephone round people to give updates which took about an hour and by that time it was bedtime and he hadnt relaxed at all!.

Please keep us informed of Ivans progress

Love Ali xx

[AliParticipant]

Hi Chris

Great news! Well done that man. That will give Vicki and Colin lots of encouragement.

You will have missed Dallas though, episode 2 8/10:-)

Please let us know when you get the date through for the big event.

Love Ali xx

[AliParticipant]

Hi Helen

I hope your chest/cough is a little better? and good on your daughter for doing the Great North Run – bless her, shes brave 13 miles, has she done alot of training?:-)

Mums been on several types of antacid (if thats what they are?!), including Lanzoprazole. Been to see the consultant today who said to retry the Lanzoprazole but for double the dose for 1/52, to see how that feels. Also been given a mouthwash and something else, so I hope the combination does some good. I will get her to try yoghurt, but she not a yoghurty person (I think she try anything though). Mums bloods are now all within normal range, which is great news.

Shes also abit down in the mouth (excuse the pun) about not being able to travel abroad yet. She has to wait until shes had her inoculations – so probably looking at next April. She can go in this country of course, but she says its not quite the same and I agree. I dont know why she turned me down when I gave her the chance of coming to Butlins with my brood lol.:-D

Any way, have a lovely weekend

Love Ali xx

[AliParticipant]

HI Vicki and Colin

Well, firstly congratulations on the funding! That seems like a victory in itself:-)

Its no wonder Colin feels abit low (and you) we have said before about the rollercoaster ride this MM journey is. Highs and lows all the time and we are just not used to it are we?

I have no doubt though that when the time comes for the next round Colin will be prepared and will have found some more strength. He has to, simple as that!

The hair loss will be a downer for him too ( my Mum had a close number 1, with hindsight it would have been better if it was even closer as the hair was very prickly and poked through her scarves, suppose its different for a man though).

Anyway, take care – both of you.

Love Ali xx

[AliParticipant]

Dear Gill

Im so very sorry for your loss.

Love Ali xx

[AliParticipant]

Hi Vicki

My Mums having a bit of bother at the moment. Shes still got a lot of acid in her stomach, which in turn has given her loads of ulcers in her mouth – she reckons about 30! They have tried her with 3 different types of antacid tablets but none are doing the trick. The acid wakes her up at night, then shes up for a few hours. Its such a shame as if it werent for this she would be really good. Her energy levels are a little better, she hasnt had any anti sickness tabs for 3 days or so, and her spirits would be better. She goes to see her consultant on Monday (brought forward on the advise of one of the nurses on here – thankyou!) so we shall wait and see if there is anything else to ease it. Shes been discharged from the hospital she had her SCT and is back to our local hospital now, her consultant is so friendly and easy to talk to so fingers crossed they will be able to bottom it! Im undecided if to do some meddling to see if shes (the consultant) had any cancellations or if they have an appointment before the weekend – I just hate to think of my Mum in pain:-(

Anyway, there endeth my moan:-)

Hows Colin?

Love Ali xx

[AliParticipant]

Hi Eve

Helen is right
When my Mum saw the specialist nurse 2 weeks ago she told us Mum would be randomised at 3 months, to either no maintenance, revlimid only or vorinostat and revlimid, which is version 5 of the Myeloma 11 trial (she said it was very new) so of course I got home and googled it and like you couldnt really find anything about it being used for maintenance. I will keep looking and of course if I find anything out will share….

Hi Helen

Sorry to hear you have a chest infection, I think you felt it "brewing" for a few weeks. Hope you are feeling better soon 🙂

Love Ali xx

[Author]

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