[AliParticipant]

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 nice to see you are getting plenty of holidays in!!

Love Ali xx

[AliParticipant]

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 is anyone going to th Nottingham info day?

[AliParticipant]

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 work. Shes just getting on with things really and has booked to go on a cruise which shes looking forward to. She had a stay in hospital a few weeks ago with cellulitis (we think it was from the vaccinations shed had) that was a bit scary:-(

Its a funny thing this maintenance treatment isnt it? I know Mum would be feeling much better without any treatment, but how do you know if its better in the long run? Shes happy to continue with it though. Go to see her consultant on Thursday and as long as her bloods are ok, that will be fine:-)

How are you both?

Love Ali xx

[AliParticipant]

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 school:-( My Mum who is at home twiddling her thumbs said why didnt you bring him to me id have loved to look after him? What do you do? I just said it would be foolish to run into a bug knowingly. It makes me cross that my Mum cant do grandparent duties when she would so love to do so. Bit of a rant over xx

Love Ali xx

[AliParticipant]

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 received many compliments about her "new" hair, by people who didnt know. We ordered it from the internet from a company called Banbury Pastiche. We ordered loads and sent the ones back that were no good 🙂

Just to let you know, the treatment was not as bad as Mum had imagined it would be and she coped really well.

Love Ali xx

[AliParticipant]

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 2012, and shes now having maintenance treatment as part of the Myeloma 11 study.

I truly dont know what id have done without the wonderful people on here, so any questions you may have, someone will have an answer for you.

Good luck with your treatment. Keep us informed:-)

Love Ali xx

[AliParticipant]

Dear Sue

I'm so sorry to hear of Michaels passing.

Love Ali xx

[AliParticipant]

You two

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

Love Ali xx

[AliParticipant]

Hi Vicki and Colin

Hope you are both keeping well:-)

As you know, my Mum is a little ahead of you in regards to treatment and was randomised in December for Revlimid and Vorinostat. I think she would have felt "cheated" to be randomised to no maintenance. I also think she would have been happier to have been given just Revlimid. Based on the fact that she had this as her frontline treatment and knows she can cope with the side effects. Vorinostat is another unknown entity. Anyhow, shes on her 3rd cycle now. The 1st month she was ok, but cycle 2 she developed itchy red spots(almost like bites) and it turns out she may be allergic to the Vorinostat. Shes to try again this month but to take Cetirizine to see if this helps the allergy. I dont know what will happen if she continues with the allergy? If she can continue with the trial on just Revlimid? I know that Babs on here has dropped the Vorinostat and is now just using Revlimid. We shall wait and see. It must be lovely to have no treatment at all, but as long as its tolerable Mum hopes she can continue with the maintenance.

Mum was admitted to hospital early hours Sat morning and is being treated for cellulitis in her arm (she has had the 2nd lot of chilhood immunisations and they think its a reaction to that?), its been a crap weekend for all:-(

Hope all goes well for Wed. Will you be told then what the next step is?

Love Ali xx

[AliParticipant]

Oh no you two:-(

I sincerely hope this watching and waiting lasts for a very long time.

Hope you have a lovely time in Barcelona Helen and good riddance to the cough:-)

Love Ali xx

[AliParticipant]

HI Suzy, any luck getting to the bottom of your husbands itchy rash? My mum has similar, she's using Aveeno lotion that my hubby was given for his excema.

Hope he's itch free by now:-)

Love Ali xx

[AliParticipant]

Hi Jean

I cant seem to post on this thread properly. I have sent you a private message.

Love Ali xx

[AliParticipant]

Hi Jean and Frank

I dont seem to contribute to this site much nowadays but I do check in regularly – Congrats on your new arrival:-)

Im sorry to hear you are still waiting for a bed, I agree with Megan – is there anyone you can chase at the hospital?

I hope this helps Frank (and you Jean)……My Mum waited nearly 4 months from end of frontline treatment to SCT. Delay, had to order Hickman line?, then waiting for bed. Her PPs were <2. Her SCT was early Aug 2012. We never asked about PPs afterwards (probably too engrossed with bloodcounts, platelets and neutrophils). We just assumed that after SCT the PPs would be totally wiped out?. At Januarys consult Mum asked about PP levels and was told Novembers result was 3. We were devastated – how could they have gone up? Anyway, I worried about it for a week and then phoned the specialist nurse. She said The Melphalan carries on working for 8 months or so. Not to get too fixated on the actual PP level but the stability of the level. Not everyone reaches the magic zero. So, I dared to ask about the previous weeks results and was told the PPs were too small to quantify. So hoorah, she was right. Mums went up (probably the wait for SCT) but then slowly went down after SCT.

I do hope you get a date soon:-)

Love Ali xx

[AliParticipant]

Hi Babs
I've been wondering how you are getting on with your new maintenance treatment. My mums on her 2nd
Cycle now and is feeling ok, except for a terrible shoulder pain and tonight she has come out in itchy lumps. It's nice that your hubby is going with you to your nex t meeting:-)

Hi Tom
I hope you are feeling well 🙂

Love Ali x

[AliParticipant]

Hi Vicki

Im sorry to hear about Colins Dad:-( But im extremely pleased you had a nice Christmas and New Year.

It does seem that Colin may be overdoing things? You have had a few really busy and long days and hopefully he is just catching up on some rest. You are bound to worry Vicki. Main thing, I think, is no temperature. If you are still feeling uneasy sometimes its best to phone in for advice? Does Colin feel unwell?

I know that Mum still gets tired, and its only just the past month or so she has not felt like a nod in the afternoon. She has had the dreaded cough/cold since before Christmas and cant seem to shake it. I have told her to keep away from A&E tonight!

As for hair – well Mums has a mind of its own! Its so curly and its really thick. She doesnt need the wig anymore, just puts on a hat when she goes outside for warmth. My brother said she hair like Judy Dench the other day!

When is Colin due to be randomised?

Love Ali xx

[Author]

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