August and is doing good, apart from now having a virus which will not clear. That started…[Read more]

I haven’t posted in a while, but just wanted to say hello. It’s really good to hear you are doing well. I’m sure that you are just like me mum, uncomplaining to family. They too will think of diagnosis day and look how far you have all come and grown closer. Here’s to the next 5 years and beyond….I expect nothing less 🙂 xx

Love Ali xx

Ali xx

Ali xx

Apart from low back pain, she says she’s fine! No treatment at present and next appt April. Nice hat…how was the wedding? 🙂

Work day so got to get up.

Hi Vicki and Andy
Love Ali xx

Fab-u-lows!!! Well done xx

I am so sorry to hear your news. You are right, its not easier to take 2nd or even 3rd time round. Did Colin have cyclophosphamide added to the velcade/Dex regime? ( I think that’s what Tom had ) I also know nothing about Bendumustine, so cannot offer any advice. But I can send my warmest wishes and a big hug to you both. Let the…[Read more]

Love Ali xx

I’m very sorry to hear about your Dad, must have been a huge shock.
Film festival? I have definitely missed something there!

My parents are selling up…they have already moved into new house with my Nana, proving to be quite stressful I’m…[Read more]

Love Ali

Alison x

As you know we are going through the same thing. Started back on the rollercoaster, Mum just completed cycle 1 of Velcade/Dex.

I completely know how you feel 🙁

Any time you need to rant, feel free!

Love to you both

Alison x

Such wonderful news! I am thrilled for you. Fingers crossed for July.

Love Ali xx

That really is a lovely picture. My Mum has the same problem!, she looks really well and you would never guess her diagnosis. Did you have a lovely birthday?

Love Ali x

Happy birthday! Hope you have had a lovely day xx

Hi Stanley

When do you start your treatment? My mums plasmacytoma is a fairly new thing,…[Read more]

I wanted to wait until we got more facts before posting again. So, after the MDT meeting today they have decided that although pps remain stable at 4, bloods are ok and no more Myeloma cells in bone marrow that more treatment (velcade) is to start. The theory behind this is that there must be some kind of Myeloma activity going on…[Read more]

We are hoping this…[Read more]

Just look forward to your daughters wedding. Whats the date?

Sending you a big hug 🙂

Love Ali x

Hey Helen, no, not heard a thing. Nothing has been done at all, no further investigation, no xrays. Probably to do with the bank holiday. She goes to see haematology consultant on Thursday so we should find out then what has been tarranged.Could I borrow…[Read more]

Thankyou for your reply. Did you have the plasmacytoma before or after your MM diagnosis? Did you have to have radiotherapy after surgery?

Mum is still waiting for
further investigations, its frustrating that the medics don’t consider it as urgent as we do, and the
bank holiday weekend doesn’t help! Still, mums got a stinking cold…[Read more]

Retirement! Good for you! You will not know how you found the time to go to work. I bet there is a market for your knitwear, family orders will keep you busy for a…[Read more]

,
ts the only way to be. In hopes I can shove the Myeloma back in its box!

Stanley, read up all you can, know…[Read more]

Hi Helen, thanks for your reply. Mums to have full body xray, its been 2 years sinc e the last one. Her consultant is on annual leave, which is typical. This was an incidental…[Read more]

Great to see you on here and even greater to hear that Velcade has been worth it for you.

Budget setting for your daughters wedding hehe, good luck with that one!

Have a lovely trip to Madeira, my in laws went last year and really enjoyed it.

Love Ali x

Yes get with it! Tom and Andy and Eve are on!

Mum is good thanks, tiredness is an issue for her too. Some days worse than others and seemingly no rhyme or reason to it. Also, mysterious pains that come and then go again just as quickly….we try not to read anything into it

When Mum goes away she does take the thermometer with her,…[Read more]

I must agree, the treatment my Mum has had from the NHS has been great and I for one cannot thank them enough 🙂 I Wish you both all the best on your husbands journey.

Sorry to butt in on this post, just want to say hi to Vicki and Colin. Im sorry I have not been in touch for a while, had trouble logging in to the new site, but I have…[Read more]

I hope you are feeling ok today:-)

Your grumbles about the department made me smile (especially the bit about the loo) best thing I find is to put paper down first and the trickle cannot be heard! I work in a hospital and a colleague and I have tried this,one in the loo while the other stands in the corridor listening! We do…[Read more]

Im not sure if the risk is just for maintenance treatment, as I suppose potentially one could be taking it for a longer period of time?

Worth the question though.

San, isnt it awful sitting and waiting around in hospitals, its like torture, especially when you are really not feeling up to it. I hope they get to the bottom…[Read more]

Back tracking a little bit for those who do not know… Mum diagnosed Nov 11 aged 57. Myeloma 11 trial, RCD 6 cycles, SCT Aug 12. Randomised to Revlimid/Vorinostat maintenance commenced Dec 12. Mum on the whole has coped, and was prepared to cope with the side effects she was experiencing. Mainly tummy troubles and fatigue. All…[Read more]

My Mum got 8 million or so cells in the one sitting, enough for 2 transplants.

Good luck with it all 🙂

Love,Ali x

Love Ali x 🙂

Its lovely to hear your Mum is at home after such a long time in hospital, and that the treatment has been worth it 🙂 Is she very mobile now?

I know its bittersweet, but you have to have hope dont you? Im trying to push it to the back of my mind, and there are days I dont think of it at all! Enjoy each other, every day. Thats what…[Read more]

I'm so sorry to hear its a relapse. You are more than entitled to have an all over the place head. Once its straight again , focus and give it some wellie.

Like Tom, I'm sending a very large hug your way.

Flipping heck, you feel so well too, what's that all about?

Love Ali x

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…[Read more]

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…[Read more]

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…[Read more]

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]

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

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]

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]

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]

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]

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]

They are great results! Well done you!

/
Love Ali

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

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]

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