[lafleckParticipant]

My husband has been on monthly Dara maintenance now for nearly 9 months, following his second line of treatment (DVD). He routinely gets debilitating diarrhoea, which at times is so sudden it is interfering with his day to day life. A pattern of 7 to 10 days post treatment seems to have emerged. He takes Loperamide as soon as this occurs and his GP has suggested that he introduce a daily capsule from day 1 of the cycle. This is what he will do from his next treatment. Has anyone had a similar experience? Thank you.

[davidainsdaleParticipant]

Hello lafleck

Sorry to hear that your husband is having problems which may be linked to Dara maintenance. I assume that it’s the subcutaneous injection he has in the tummy every 4 weeks.

I’m now on Cycle 47 of Dara maintenance and fortunately no real problems except for the dexi fatigue a few days afterwards.

I know that some patients on dara maintenance have their treatment given by IV on a drip, takes a lot longer but may be worth you exploring this as an option.

Hope this helps.
David

[davidainsdaleParticipant]

Hello All

Quick update on 2nd line maintenance. Started cycle 50 of monthly maintenance this week. Bloods and pps all normal. Came home and popped open a rather posh bottle of red wine as a small treat on reaching my half century!

Hope this helps.

David

[mulberryParticipant]

Congratulations David!
I’ve just started cycle 5, so still weekly appointments at the moment. I hope I get to cycle 50! That must be about 3 yrs 3 months so far?

[davidainsdaleParticipant]

Hi All

Quick update from me.

Now starting cycle 55 of monthly daratumumab maintenance. Bloods and myeloma proteins all normal.Just the usual side-effects for a few days after treatment.

Hope this helps

David

[alexandraParticipant]

Hi David

I really need to say a huge thank you for all your posts regarding Daratumumab treatment. I had DVD treatment starting January 2023 and have been on single agent Daratumamab for a year now.

Your posts kept me going when I was really struggling with the side effects, your positivity and updates on Daratumamab gave me hope that it could work for me too.

It does work and it is holding my Myeloma completely stable.

Thank you again
Best wishes
Alexandra

[davidainsdaleParticipant]

Hi Alexandra

Thanbk you for your kind words.

Pleased to hear that your treatment is going well.

David

[joversonParticipant]

I had first dose of dara maintenance of dvd regime in March but side effects been so bad I’ve not had any further jabs since. I have severe gastric problems, abdominal pain , tremblingly , burning sensation all over . Was prescribed pregabalin but didn’t find it helped . I’ve had numerous scans, endoscopy, sigmoidoscopy etc but nothing thrown up so assume it must be due to the treatment. I feel absolute rubbish and it’s really getting me down and impacting my life big time . Anyone had similar symptoms and any suggestions? (I am in remission by the way , but wonder if it’s all worth it ….)

[davidainsdaleParticipant]

Hi Joverson

Sorry to hear that you are having problems with your treatment.

There are quite a few patients in our myeloma support group who have had Dara without any problems, but I know of one who did, so you may not be the only one.

What seems odd is that you presumably had the Dara injection for a number of months as part of the DVd cycle of treatment before going onto maintenance. So far as i am aware the maintenance jab is the same.

So just wondering if there is any difference in where the injection is being made up, or supplied from.

My only suggestion, apart from carrying on and hoping that it improves , is to have the Dara given by drip rather tham injection and see if this makes a difference.

I’m now on Dara maintenance cycle 57 withno real problems.

Hope this helps.
David

[joversonParticipant]

Thanks for your reply. Even though I’ve been on nothing at all for 6 months now I’m feeling just as ill so god knows what I’ll be like if I start back on it ! I felt well beforehand. Just hoping for some advice

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