Dear Mavis
Thank you, it’s all very difficult isn’t it. I think we are still a long way off individual tailoring of treatment, due to the erratic differences between us all, but we must live in hope.

Hi Andy, you must be back now? Hope you managed to soak up a lot of that lovely Greek sunshine, I think I might have to book another holiday as soon…[Read more]

Hi,

Like others, I remember it well losing my taste during CDT and it took about three months after chemotherapy before my taste buds eventually returned to their usual levels.

My mother suffered from permanent loss of sense of smell and taste after a severe cold for over twenty years! She tried various remedies, joined discussion forums and…[Read more]

As I understand it, it has all changed and new claimants have to claim for PIP (Personal Independence Payment). The higher rate is based on your ability to do things for yourself and the support you need. My husband is receiving it because, at the time of completing the form, which is what they assess, he was unable to walk more than 50 metres and…[Read more]

Fantastic news!

Time to really enjoy life again.  Hoping for a really long, healthy and happy remission for Graham and peace of mind for you, Angela.

Sarah

Hi Deborah,

It sounds like UCLH has a lot more options when it comes to keeping an eye on you than our hospital here in Swindon. Here you are basically in or out, and if it works well you get into the specialist haematology/oncology unit. M is now home after a very sudden discharge yesterday evening. No hint of it on Thursday so I went to a…[Read more]

Thanks Maureen,

You are always so reassuring. I just hate seeing M going through so much. It wouldn’t be so bad if there seemed to be any positive results from all of this. We just have to hang on to the knowledge that the myeloma hasn’t progressed and would have done without treatment. He will get to SCT and maybe it won’t seem quite so bad when…[Read more]

Hi Andy and Vicki
Thanks, sorry I’ve taken so long to reply, I was waiting to see what happened after the dex…..and today’s appointment.
WELL,!!
I had another blood test the day before the dex started… These results were a bit better than the previous set! So may be a blip! Anyway I’ve had the 4 days dex.
So more bloods today,
NO more…[Read more]

Hi Ali
It is just a year since I started Velcade, similar to your mum. I was ok, and fit, so they hit it hard. However, it is tough and I found it very painful for about half of each cycle, as the treatment went on the pain in my feet worsened so they halved the dose. I now have some residual ache in my feet but have had several painkiller free…[Read more]

Thanks Mavis and Megan,

Lovely to hear about your rainbow too Mavis.

I’ve been to PALS today and got the parking issue off my chest.  Never thought about taking a cab, Megan, but that’s a really good idea.

M has C.Diff. He’s now in isolation and will be in for at least 10 days. This will certainly have an impact on the chemo and SCT plan, but…[Read more]

Well, M got through the DT-PACE pulse without too many problems. He was very tired but there was no nausea of anything like that.  He needed a blood transfusion afterwards but was discharged after that last Sunday. He saw his consultant on Tuesday and Friday (we get great care here!) and was neuropenic on Friday. Had to start the GCSF injections.…[Read more]

Hi Dick

After 3 years plus on this roller coaster and learning an awful lot on the way,plus hospitals have very different ideas about when treatment should begin plus how test are interpreted !!!
We have come to the conclusion ,when you have your BMB have bloods taken before hand if you need any bloods or platelets have an infusion ,then they can…[Read more]

Hi Rebecca
I think it is the right thing to distance yourself at times from all to do with myeloma, there is a danger that it becomes all consuming, but we do like to keep tabs on people on here and see how they are doing! So you have to keep popping in now and again. I’m afraid I’m just getting angrier and grumpier about the whole injustice of it…[Read more]