Hi there,
So sorry to hear about your son. On the positive side UCLH are one of the top hospitals specialising in Myeloma/ M.M in the uk and have 1st class specialists in this field so please take this on board and know that your son is in good hands.

I am up at UCH tomorrow for an update on my own treatment plan prior to a hopeful SCT.
Try to…[Read more]

HI Kath
I am so sorry to hear this news. Can I ask what your farther in laws paraprotein had been reduced down to prior to the SCT and his age group?

What treatment plan was he on prior to his SCT was this thalidomide?

I send you my very warmest wishes and of course a speedy recovery for your father in law.

Kindest regards

Hi Teresa
Yes it is Cyclophosphamide. I start the new regime tomorrow so fingers x that I can tolerate this more than I couls the thalidomide which I feel so disappointed by as I really wanted to try the best possible option to try and bring my paraprotein levels down.

Hope all is well with you both
DX

Ohh Andy that does sound a bit high!!
I thought mine was bad at 49 …. All the very best for Thursday and please keep me posted.

Dawn

Hi Andy
Having a positive attitude will help you so much and you will experience up’s and downs with treatment.
I have decided to change my treatment plan to VCD purely because I have suffered with the neuropathy quite badly, however the vtd has got a better response rate some I am told and I’m sure you will be fine.
Do you mind if I ask what your…[Read more]

Thanks Teresa that is really helpful and I will speak with my consultant in the morning.
Sending my very best wishes to you both
Dx

Thanks Jan, I will speak with them on wed. All the best to you and lovely to speak with you
Dx

Hi Gary
Thankyou so much for your reply and I am so pleased that sue is doing so well.
I do seem to be having quite a few problems at the moment with my treatment and I just hope I start to see an improvement in my next cycle.
I seem to have this Mist like a brain fog over my eyes and I have a very red rash like a sun burn aswell as neuropathy.…[Read more]

Morning Jan

Thank you so much for your response and I will do as you have suggested and try and put things in place prior to treatment. I think we all have good days and bad but at the moment it all feels a bit rubbish.
Have a nice Sunday and please keep in touch.
Love Dx

Hi Jan
Would you mind if ask you about your hair ..did you lose any on your VCD treatment?.
When you had your stem cell transplant we’re you offered a cold cap or is not something that would work with the high doses of chemo.
I am so upset to lose my hair and I know it’s only hair and will eventually grow back but it just makes me feel so frighten…[Read more]

Hi there
I started my vtd last Tuesday with my 2nd injection administered yesterday and I have had extreme pain all through my back both times lasting the whole night and the following day. I can’t sleep at all awake all night probably because of the Dex even though that is taken 1st thing in the morning.
Anyone else having the same problems? I…[Read more]

Hi I am so sorry to hear your news..can I ask what chemo regime he is on and I would be interested as to what clinical trial he is on please.
I started my own chemo yesterday with VTD and I was told that I could not go onto clinical trials at this stage.
In answer to your question about age, I asked this same question at the hospital yesterday…[Read more]

Hi Vanessa
Could I just ask what your husbands paraprotein levels started at prior to treatment and what they are now.
Did he have any weight gain and any mood disturbances, and how were his hands. Did he experience any neuropathy.
Sorry to ask so many questions, I have been awake most of the night worrying about it all.

Thankyou so much
DX

Hi Vanessa
Thank you so much for your reply..I have read so much about the treatment and it’s side affects. Can you tell me how your husband has been and what he has experienced ?

Best wishes
Dx