[tomParticipant]

Good morning hope we find you all well today…
I went to see my Top man Dr Jalihal yesterday? I will be going on “Daratumumab” for my fourth line of treatment.
I have signed the consent forms had a chat about how it works, and confirmed my start date which is the 22nd November (our wedding anniversary lol) also met John from our local support group turned out he is having the same treatment…….am ready to roll with this new regime stick with me it’s going to be fun……onwards and upwards

Tom …….

[susieParticipant]

Hi Tom.

Just to wish you all the best for your new treatment. I hope it works well for you and you’re able to achieve a long remission from it.

Love

susie

[MikejanulewiczParticipant]

Good that you’ve got a date Tom.
And hope all goes well.

I had my second dara today (yesterday)
Only 8 to 4pm today so much better. And next week should be quicker and I wasn’t as sleepy because of antihistamines so I will drive in myself.
No side effects during at all but just the sleeplessness cos of the Dex tonight. Otherwise simple!!!! Just hope it works. I think I’m nit going to know for a couple of months- is that what you’ve been told?

Also – a question for you. I’m a bit worried that fourth relapse sounds quite a lot. Do you know what/ how many relapses are “normal” and what is likely next treatments after this. I get the impression we go back to “older” drugs again.

Take care

Mike

[tomParticipant]

Thank you Susie, it will work great for me…..xx

[tomParticipant]

Yes Mike it’s good to know now but it’s took an age to get it started.sounds like your doing good on it for early days that’s good.
I haven’t been given a time to be told how long before they know it’s goung to work, do you have the Dex for two days after the infusion and is it only two tablets ? And do you need to take anything else, he said something about other meds but never elaborated ?.

Well fourth then fifth? I don’t know what the fifth would be am gussying something else will pop up by then..
Good luck and as you will be three weeks ahead of me I will keep my eye on you…..onwards and upwards x

Tom

[patsyannParticipant]

Wishing you both well on the Daratumumab. Please let us know how you get on with it. We’re still waiting to see if David can have it. It needs to be a special request as he’s beyond 4th line treatment. He’s had Lenalidomide, Velcade, Pomalidomide and, most recently, Carfilzomib. He’s always done better on the proteasome inhibitors (Velcade & Carfilzomib) than what his consultant calls the “imids”. Everyone seems to be different so it’s good that there’s more than one way of fighting this
Pat

[MikejanulewiczParticipant]

Hi Pat
Good luck with the special request. Obviously I don’t know how effective it is yet but apart from the length of giving it, I’ve had no other side effects at all—- just Dex sleeplessness!!
You are very right that we are all different.

Tom, my extra drugs are
For two days after the infusion, 2x2mg of Dex
And continuously, twice daily antiviral.
I’ve not been prescribed anti nauseants or antibiotics.

Fingers crossed for everyone.

Mike.

[patsyannParticipant]

Thank you! Waiting to hear is stressful, especially as he hasn’t been feeling great and had to have a blood transfusion yesterday because his haemoglobins are low which made him very tired. Hopefully we’ll hear something soon.
It’s good to know you’re not feeling any adverse effects as that’s always a concern on new treatment. I hope you get some good news on the effectiveness soon too.
Pat

[tomParticipant]

Hi Pat….thank you for your well wishes and fingers crossed you get the drugs sorted out sooner than later..
Mike thanks for that, that’s not too many drugs eh ? And infusion will get to once per month sounding good to me…am ready…👍

Have a great weekend you all…..onwards and upwards

Tom x

[tomParticipant]

Hi Pat….thank you for your well wishes and fingers crossed you get the drugs sorted out sooner than later..
Mike thanks for that, that’s not too many drugs eh ? And infusion will get to once per month sounding good to me…am ready…👍

Have a great weekend you all…..onwards and upwards

Tom x

[tomParticipant]

Hi Pat….thank you for your well wishes and fingers crossed you get the drugs sorted out sooner than later..
Mike thanks for that, that’s not too many drugs eh ? And infusion will get to once per month sounding good to me…am ready…👍

Have a great weekend you all…..onwards and upwards

Tom x

[tomParticipant]

Hi Pat….thank you for your well wishes and fingers crossed you get the drugs sorted out sooner than later..
Mike thanks for that, that’s not too many drugs eh ? And infusion will get to once per month sounding good to me…am ready…👍

Have a great weekend you all…..onwards and upwards

Tom x

[tomParticipant]

Hi Pat….thank you for your well wishes and fingers crossed you get the drugs sorted out sooner than later..
Mike thanks for that, that’s not too many drugs eh ? And infusion will get to once per month sounding good to me…am ready…👍

Have a great weekend you all…..onwards and upwards

Tom x

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