[patsyannParticipant]

Thank you Maureen. It’s interesting what you say about counselling as it’s been offered but I haven’t felt ready to take it up yet. Sometimes I feel I’m coping quite well and at others I’m all over the place. And exhausted. I suppose it’s early days yet for me.
I’m glad to know you’re looking forward to your trip to Russia. It helps to know that in time I should feel better.

Love, Pat x

[patsyannParticipant]

Thank you Liz. I feel I’m drowning in paperwork at the moment. After spending most of the last few months at the hospital with David I find there’s so much that needs to be done in the house and garden that I hardly know where to start. At least it should keep me busy, and I think the garden will help. They say you probably shouldn’t make any major decisions for the first year so you probably need to take your time about deciding whether or not to downsize.
We were so pleased when David got approval for Daratumumab as he was past the 4th-line treatment they specify but by the time he started it he was very weak and the myeloma was pretty rampant. It certainly looks promising though so I hope more people benefit from it at an earlier stage and that a cure is not too far away.
Love and best wishes for the road ahead.
Pat x

[patsyannParticipant]

Hello Liz and Maureen,

Liz, I’m sorry to hear of your loss and wish you well in trying to get your life back on track. I too am now in the same situation since my lovely husband David died on 14th March after nearly six years trying to stay positive through several lines of treatment. Like you I sometimes think he’s still in hospital. He did his best to enjoy his life as much as possible during those treatments and would expect me to do the same, but it’s still early for me and I find I’m still exhausted by the last few months.
Maureen, I had been wondering how you were doing a year on from losing Ian and hope that you’re now finding a new normal which you can enjoy.
If there are any members of Team Daratumumab reading this I hope it is working well for you without too many side-effects. David found it reasonably gentle but sadly it just came too late for him to rein in the myeloma.

Pat

[patsyannParticipant]

Hi Helen

Thank you for posting to let us know how you are. I have been wondering how you were getting on with the Interferon.
My husband is now in a hospice after his last treatment, Daratumumab, didn’t work for him and his bone marrow was too fragile to try anything else. It’s a strange and difficult time to be in. I hope you are surrounded by love and support.
I admire your decision to go to Rome and hope you enjoy it and are able to make the most of it. I too have found your posts over the last few years helpful and inspirational. Thank you for that.

Pat

[patsyannParticipant]

Thank you, Mike!
Yes it will be quite close for visiting. He may even get home with support from them once they’ve had a chance to assess him.
I will indeed look after both of us. You take care of yourself too.

Pat

[patsyannParticipant]

Hi All

I hope the rest of you are still doing well on Daratumumab. Sadly, we were told last week that it hasn’t worked for David. I think we knew that as he’d just got weaker over Christmas and his blood counts were all very low. He’s now in hospital and we’re waiting for a hospice bed. It was just too late for him but I believe results are good for those given it at an earlier stage so I hope the news is good for the rest of you. Thanks for your support over the last couple of months.
Pat

[patsyannParticipant]

Never thought I’d say this but I was actually looking forward to the energy boost that would come with the Dex. However David’s Daratumumab is given with Prednisolone as the steroid instead and it doesn’t seem to have that effect. He also doesn’t like the tablets as they’re not coated. He’s been given some to take at home tomorrow before treatment so we should have a shorter day at hospital.

[patsyannParticipant]

Hope this one is a bit shorter than the first. David will have his fifth on Friday. Interesting to know you’ve been given a timescale for a review on its effectiveness as we haven’t. Anyone else on Team Daratumumab been given any idea on how long it takes to know if it’s working? Or any clues to look out for in the meantime?

[patsyannParticipant]

That’s good to hear, Jean. The first dose of a new treatment is always a worry. Like Mike, David had no reaction, although the Piriton anti-histamine knocks him out and the effects of it seem to last for the following couple of days. Having it done in clinic is much better. Here’s hoping Daratumumab works for all of us!
Yes, getting care packages in place is a nightmare (for mother-in-law in our case) but forcing the issue sometimes works. I know what you mean about the moaning :-).
Pat

[patsyannParticipant]

Hi Jean. How did Mike’s first treatment go? All well I hope.
Pat

[patsyannParticipant]

That’s good news to start a year with! Hope all goes smoothly. David is a bit more awake today and feeling not too bad. His next treatment (his fourth) will be next Friday. Nurse in Day Unit on Friday phoned our local district nurses and arranged for them to come and do his bloods at home the day before, so we’ll be spared one lot of potholes this week which cheered us up a bit!

[patsyannParticipant]

Hi Jean. I’m glad to hear that CDiff has cleared. Wishing you both all the best with the treatment. I hope it goes to plan and goes well without any adverse reactions. Keep us posted on how Mike gets on.

[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

[patsyannParticipant]

Hi Tom, and rest of team

I’ve been wondering how you’re all doing. Tom, it’s good to know that blood results you’ve seen are looking good. I hope when you see the consultant in January that the news is good. I was going to ask if everyone else is on Dex with this? David was expecting to be but the steroid of choice here is Prednisolone, which is new to him – and tastes horrible he says. It doesn’t seem to give the energy boost Dex does. Don’t know what to suggest for dry mouth, other than boiled sweets, which might not do your diabetes much good. Hope you find something that works.
Jean, how are things with you? It must have been a stressful Christmas for you both.
And I hope all is going well with you, Mike.
David has just had his third infusion, on Friday and in Day Unit this time. It’s too early to tell yet if it’s doing any good. His white counts and neutrophils are very low and he has a lot of bone damage so is pretty fragile.
All the best to all of you for improving health in the New Year.
Pat

[patsyannParticipant]

Hi Sue

The treatment itself seems to have been fairly problem-free, with no adverse reactions. He’s home and the next treatment is scheduled for the Day Unit next Friday so hopefully that will go according to plan. He had to get more platelets as his blood counts are not great and he’s very tired and quite weak, which is more apparent now he’s home. We just have to hope this works, and works quickly, for him.

I’m sorry you’re having to deal with colds and chest infections – the very last thing you need when Paul’s on treatment. Hope you both recover soon and have a good Christmas!

Pat

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