[tomParticipant]

Hi every one, yesterday 22 November 2018, I underwent my first infusion of Daratumumab, I have to say it went well….one hour before I had some premeds give. Intervenusly (Dex/antihistamines) then started my infusion at 9am, I was told if I was going to have a reaction I would get it in the first hour, well they were correct lol I got my first reaction at 45 minutes in, it wa a tight chest/throat, I informed the nurse who ask how it was I said not too bad…said she will keep an eye on it….then a minute or two later my nose started to block up and run also my eyes also started to run pretty bad, I called the nurse who immediately turns off the drip and told me we have to leave it off for an hour and give you more antihistamines through infusion, she did that and within 10/15 minutes my noses/eyes cleared up, nurse said it was great but she will give me 10 more minutes and run the Daratumumab early see how it goes…..it was restarted and I sailed through it. Time I finished was 6pm which was pretty good for first one.

I had a restful night but not much sleep due to the steroids I had, today I was up at 7.30 washed and dresses and out with the dog walking…..today has been a good day, and so far I am happy with it….
These are the pills I was given to take, seems more than I thought it would be? This on same treatment is this the same amount of drugs you have ?….fingers crossed the photo posts lol…
Cancel the photo I don’t know how to do it haha

Onwards and upwards

Tom

[patsyannParticipant]

Hi Tom. Glad to hear Day 1 of Daratumumab went OK for you. Here’s to a quick, and long-lasting, response. Hope the wedding anniversary didn’t go uncelebrated! We’re still waiting to hear about Daratumumab.
Pat

[tomParticipant]

Hi patsyann
Yes went well if that’s the only side effect I have to witness and a drop in my Pp’s I am happy….
Hope you soon get the results yiyr waiting for.
The wedding anniversary was a bit dull what with being in hospital all day we gave it a miss lol.
Take care x onwards and upwards
Tom x

[patsyannParticipant]

Hi Tom, and the others who wished us well as we waited to hear if David would get Daratumumab.

We’ve just heard that his consultant’s request has been approved and he should start treatment next week. They’re doing the first one as an in-patient, just to be on the safe side, so he’ll have an overnight stay. So fingers crossed it works for him, and for all those of you who are also on this new treatment path.

Pat

[tomParticipant]

Hi patsyann
Pleased it’s all sorted and let you know I am sat having my third Daratumab.
So far it’s going great, my first one was a long day and they provisionally booked me a bed on the ward (just in case) but the 2nd one went faster as I had no side effects and it was a smaller bag. Good luck it’s good stuff onwards and upwards XX

[patsyannParticipant]

Hi Tom, and Mike?

Hope Daratumumab treatment still progressing well for both of you. David had his first on Friday. Prednisolone instead of Dexamethasone I think, and the Piriton anti-histamine pretty much knocked him out so he slept all through the day. No allergic-type reaction at all for him but they were keeping him in overnight anyway because of side-effects with previous treatments. His BP dipped on the Saturday, recovered and then dipped again but is now back to normal. His platelets and haemoglobins have been very low so he’s had 2 lots of platelets, and a blood transfusion today, and is still in hospital. I should stress that this is at least 6th-line treatment for him and he wasn’t in great shape before starting it. We think the plan is to do the second dose tomorrow or Thursday while he’s still there and then hopefully he will be home for Christmas. Like you, we won’t know how effective it’s been for a while yet. Let’s hope the New Year brings good news for all of us.

Pat

[tomParticipant]

Hi Pat…
Well me I am doing pretty well with it so far..though the lack of sleep hasn’t got any better haha….still early days am sure am not thinking too much on weather itbis or isn’t working till after the new year.

Pleased it went well for David it will only get better, I think it’s less toxic so that’s a blessing…fingers crossed it soon settles everything down….

Tom xx

[patsyannParticipant]

Thank you Tom. He’s having his second dose today, sleeping through most of it again, and the plan is that he will get home tomorrow if all goes well.

Pat

[tomParticipant]

Hi patsy
I don’t get sleepy, but the lady next to me having the same treatment..(week behind me) always nods of …..is it me that bored her lolol…
Good luck with David’s treatment….

Tom xxx

[patsyannParticipant]

Hi Tom
David sleeps through the entire infusion, and quite a lot for about two days afterwards. I’m not sure if this is because of the Daratumumab, the Piriton, or the amount of painkillers he’s on at the moment. I shouldn’t think the lady next to you is bored, just that it does seem to knock some folk out more than others. I’m relieved that, apart from the sleepiness, the side-effects seem to be minimal.
Thanks for the good luck wishes! We need all of those we can get at the moment. Good luck to you too. And all the best for the new year.
Pat

[jataylorParticipant]

I’m due to start this treatment on Monday. The various posts have reassured me about the effects; what still worries me is the impact on my veins, with a canula going in (presumably) every week. It hasn’t been easy finding a suitable vein for other infusions (Zometa) and the bruising from that usually lasts a week, so another one will have to be found.

[tomParticipant]

Hi pat
Sorry for delay in reply….as for me I won’t sleep properly for a few days..but I put that down to the Dex effect though lol pleased David is doing well….xx

[tomParticipant]

Hi Jataylor
Yes my veins are hiding ones lol..but thankfully we have nurses that normally find a good one, never been let down yet.
Your first one usaly gives side effects, tell them straight away, they will turn infusions off and pretreat those side effects…and all being well you will then s@il through all the infusions…my side effects started off with a cough….I told the nurse who came to see and within seconds my nose/eyes started to stream like a tap was turned on….soon sorted with more premeds..now at the end of my weekly infusions and starting my two weekly ones…..
Good luck on yours….at consultant next Thursday to see how it’s gone…..then start my two week ones….

Tom onwards and upwards xx

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