[daddiagnosedParticipant]

Hi all,
I spend a lot of time reading the valuable information that you all share, so firstly, thanks for being such an important resource.

My Dad was diagnosed 3 and a half years ago. He was treated with (in this order) RCD, VTD, SCT, revlimid maintenance. After 21 months on the maintenance, the pesky paraproteins started going up. Maintenance was stopped and we were on a watch and wait scenario. After 3 months, the paraproteins had gone crazy – higher levels than when he was originally diagnosed. He was started on VCD 2 months ago and it didn’t work AT ALL.
He was admitted to hospital half way through his 2nd cycle because his kidneys were really struggling – creatine levels over 300. Despite lots of fluids and treatment, there is very little improvement in his kidneys.
The consultant shut the dreaded curtains on his ward visit yesterday. He’s been in talks with other experts about the way forward – no Pomalidamide because Dad has completely stopped responding to Revlimid so they are certain Pom will just waste more time. A bunch of options are ruled out because of his kidneys.
On Friday, he will start Bendamustine, Dex and Thalidomide so firstly, I wondered if anyone could share any experience of this regime?
Reading between the lines, after this treatment, we have to hope that daratumumab becomes available because I think we’re out of options.

I can’t quite believe we’ve got to “running out of options” so quickly – I have held such hope that there would be a new treatment each time one became unavailable.

Thanks in advance

[davidbrParticipant]

My thoughs are with you at this troubled time. Wish I could help in some small way but can only wish you well.

Regards David

[cygnetParticipant]

Hi – I am sorry to hear your news.

Have you tried speaking to the Info Line Nurses – they are very knowledgeable and may be able to explain what your dad can expect to experience on this new drug regime ?

Sending love and hugs,

C xx

[susieParticipant]

Hi,

I will be starting Velcade in the coming months. Can anyone tell me whether bloods have to be done before each injection ? Does anyone get their bloods done at their GP surgeries to save a hospital visit.

Thanks and best wishes to all

susie

[susieParticipant]

Sorry my post was in wrong thread. Apologies.

[superwomanParticipant]

Hi susie

l for finished  velcade treatment in November and yes you need to do bloods before each velcade injection its a bit of a bind but they need to keep eye on what’s happening to all your blood counts, l go up to my local out patients blood testing department its local to me you just take a ticket and wait to get called. Never wait more than 5 mins unlike at local doctors where they are always running behind time. The advantage to velcade is it only takes a few minutes unlike an infusion so with blood tests on other days to in total only a hour or so for week. All the best xxsuperwoman kate

[janwParticipant]

Hi Susie, I used to have blood tests once every week for the twice weekly Velcade injections. The blood tests are usually carried out at hospital on the chemo ward just 5 minutes prior to the injection to ensure your levels are all to go ahead with the Velcade injection. All the best. Jan

[compass007Participant]

Ask about IXAZOMIB relativley new drug recently aproved in UK…however not sure about the drug with the kidney condition, but certainly wort asking about.

 

Good Luck

 

Les

[Author]

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