[jeapal23Participant]

hi
Michael my husband has had quite a year He has been in hospital 5 times this year. The last two with pneumonia and at deaths door glad to say he pulled through. He has been on pomalidomide 44 months, third libe treatment. The hospital have decided that Mike should have no more chemo. So he is going to get this new treatnent I see that a couple of people are getting this. Mike is having a picc line fitted on the 31st and he will start treatment on the 2nd. he is going to have the first dose over 2 days due to possible reactions. he will know after three treatments whether its working or not. This is his last chance of treatment fingers crossed it works

[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

[MikejanulewiczParticipant]

Ok

I think we’ve now got a team!! With both of your husbands and Tom and myself—-team Daratumumab.!

Tomorrow is my 6th treatment so still weekly, but hospital habit pretty smooth now—- I go in at 9am, given the premeds, start getting sleepy, fall asleep at start of infusion, wake up a couple of hours later. Chat to my fellow chemo users and off home about 4pm.

Even after this small number I feel so much better. My back is not painful now ( I was on small dose of morphine 3 months ago). No side effects. And feeling pretty normal. Much better than ANYTHING I’ve been on in the last 7 years!
The goood news last week was pp started to fall, just a little but still early days. So hang on in there everyone and I hope your Daratumumab journey is as smooth as mine has been.

Also, the info from my consultant isn’t that this is last line treatment. There is other stuff out there that is readily prescribavle and also trials and new treatments in the pipeline. So please everyone remain as hopeful as possible.

A merry Xmas to all.

Mike. Xx

[MikejanulewiczParticipant]

Ok

I think we’ve now got a team!! With both of your husbands and Tom and myself—-team Daratumumab.!

Tomorrow is my 6th treatment so still weekly, but hospital habit pretty smooth now—- I go in at 9am, given the premeds, start getting sleepy, fall asleep at start of infusion, wake up a couple of hours later. Chat to my fellow chemo users and off home about 4pm.

Even after this small number I feel so much better. My back is not painful now ( I was on small dose of morphine 3 months ago). No side effects. And feeling pretty normal. Much better than ANYTHING I’ve been on in the last 7 years!
The goood news last week was pp started to fall, just a little but still early days. So hang on in there everyone and I hope your Daratumumab journey is as smooth as mine has been.

Also, the info from my consultant isn’t that this is last line treatment. There is other stuff out there that is readily prescribavle and also trials and new treatments in the pipeline. So please everyone remain as hopeful as possible.

A merry Xmas to all.

Mike. Xx

[jeapal23Participant]

good to hear that you are doing great. I think the reason Mike was told last line was because the toxicity from chemo is doing him no good and infections will kill him. twice I have been told to prepare for the worse. Fingers crossed this helps. xxx

[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

[jeapal23Participant]

My Husband went back into hospital with high temperature last night. Seems his chest is clear. im hoping this doesn’t put a spanner in the works

[patsyannParticipant]

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

Pat

[jeapal23Participant]

Turns out my hubby has C Diff.

[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

[tomParticipant]

Hi team Daratumumab
Hope all running well ?
Jean I hope hubby is soon on the mend….it’s a worry I know….
Well I had my sixth infusion last Friday…throws my diabetes all over the place to be fair….bloody Dex lol
Anyone got any tips for dry mouth ? It’s the worst and forces me onto orange and lemonade to help quench the thirst.
Apart from that doing good….blood results (when I get them) are looking good but I am not looking it them as a lot are missing so it’s incomple, will wait till I see Top man in January…
Anyway hope yous all had a great Christmas and I would like to wish you all a happy and healthy new year……onwards and upwards xxx

[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

[jeapal23Participant]

Hi Pat. Mike is still in hospital. hopefully cdiff has gone. he is getting Picc line tomorrow and maybe treatment on 1st Jan.

[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.

[jeapal23Participant]

Hi Pat, well I’m pleased to say after a fortnight of being in hospital he is back on plan, Picc line today and treatment given over 2 days starting tomorrow. hope your husband is doing ok.

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