[dawnParticipant]

Hey Mariel

So sorry it’s a journey to say the least…however myeloma treatments are improving constantly and I’m sure once you get your head around it you will be ok.

Sadly it is a rubbish cancer but I’m sure you will give it the punch it deserves just keep strong ok x

[dawnParticipant]

Hi Clare

Sorry to hear this.
All I can say is Myeloma is a real journey, I won’t go into great depth of my own … However please just concentrate on day by day ..There are new and great treatments becoming available constantly ..I am on a trial at the moment.. Please just try and keep positive ok….

Love and kindest regards
Dawn

[dawnParticipant]

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 keep positive as myeloma diagnoses has moved forward a very long way with new treatment plans / drugs becoming available.
Keep strong your son is young and I’m sure will be healthy enough to fight this ok .

Thinking of you both
Dx

[dawnParticipant]

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

[dawnParticipant]

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

[dawnParticipant]

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

[dawnParticipant]

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 paraprotein levels ?
Good luck , stay positive and please keep me updated.

[dawnParticipant]

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

[dawnParticipant]

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

[dawnParticipant]

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. Everyday seems to bring a new challenge im finding but I will get ther and your encouraging news really helps to lift my spirits.
I have been keeping a diary as I’m not sure if the antinviral meds may be a interacting with the velcade or the thalidomide.
Anyway please keep me updated with sue as it is so good to keep in touch with people who know are going through this.
Best wishes
Dawn

[dawnParticipant]

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

[dawnParticipant]

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 d with everything else to take on board.
I hope you don’t mind me asking
Dx

[dawnParticipant]

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 feel totally exhausted and I know it’s early days but I do hope this is not going to be a long term pattern 😔

[dawnParticipant]

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 whilst I had velcade injection and I was told they have patients at the moment ranging from 40 -65.
I am 55 and I was diagnosed 4 years ago with smouldering Myeloma.
Very best wishes for the future journey and just try and take 1 step at a time so I’ve been told.
Dawn x

[dawnParticipant]

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

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