[patsyannParticipant]

Oh Jean, just what you didn’t need right now. I hope the hospital can get on top of that quickly so he can get on to treatment as planned. David is home but tired and weak so it’s a constant worry at the moment. Thinking of you and sending best wishes to you both for a positive outcome.

Pat

[patsyannParticipant]

I hope it doesn’t, Jean. Fingers and toes crossed for you both.

Pat

[patsyannParticipant]

Jean, that must be really hard. We were told last year that it was very unlikely David would still be here by now. He’s having his second dose of Daratumumab today. As with the first one he’s slept through most of it. His BP seems to fluctuate a bit but drinking more helps according to the nurses so I’ve spent a chunk of the day waking him up to put a glass of water in his hand! If all goes well he should get home tomorrow. It’s good to know how others are finding this treatment. I do hope it turns out to be a good one for all of us.

Pat

[patsyannParticipant]

Hi Sue

Second dose today. If all goes well he should get home tomorrow.

Hope you have a lovely Christmas too.

Pat

[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

[patsyannParticipant]

Helen, I’m really sorry to hear that things haven’t been going well for you. I very much hope that the Interferon will be effective and make you feel better for as long as possible.

Pat

[patsyannParticipant]

Hi Jean

Is this Daratumumab? My husband is just about to have his second dose of this. Like your husband this is the last treatment in the box for him. I expect that you’re both as on edge as we are at the moment. Fingers crossed for all of us.

Pat

[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

[patsyannParticipant]

Thank you, Sue

David’s not too well at the moment so we’re hoping the Daratumumab he’s just started on will improve our chances of a good Christmas.
All the best to you and Paul.

Pat

[patsyannParticipant]

Hi Sue,

I hope you manage to persuade the pharmacy to give you the soluble ones. Happy to have helped if you succeed. This illness is difficult enough to deal with without having to cope with avoidable problems with a basic part of the treatment. Let us know how you get on.

Pat

[patsyannParticipant]

Hi Sue

We’re in Scotland so it shouldn’t be difficult to find the soluble tablets. The ones David had most recently were Glensoludex 2mg soluble tablets. Manufacturer is Glenmark Pharmaceuticals Europe Ltd. That’s what our hospital pharmacy supplied. He had to take 10 of those daily. I just asked him and he says there’s a bit of an after-taste but nothing much and a few sips of plain water get rid of it. He really struggled the first time he had Dex as he had to take about 20 of the solid tablets at a time and found it really hard to swallow them without retching. Hope that helps.

Pat

[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

[patsyannParticipant]

Hi Sue

My husband has had to take varying doses of Dex over the years and, like yours, struggled with the initial tablets which had to be swallowed individually. It was a huge problem for him and worrying about it just made things worse. He found that taking each in a teaspoonful of yoghurt (not the live stuff!) was the only thing that worked. Since then he’s always had the soluble tablets which are dissolved in a small glass of water, which turns orange. Followed usually by coffee or something else to take the taste away. We haven’t encountered a liquid version yet. Don’t hesitate to ask the haematology nurses for any suggestions on alternatives, or ask the nurses on the helpline here. They’re always very good.

Pat

[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

[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

[Author]

Posts