Darzalex and side effects

Hi Maybee60bea925

I am sorry that you have not yet had a reply to your post, but sometimes it can just take a little longer for someone in similar circumstances to see it and offer support. By me responding it should bump your post and hopefully someone who has had experience with Darzalex can help.

I am sorry to hear that you have had such severe indigestion on the medication and it does sound pretty unpleasant. Am glad you have been able to see the consultant gastrologist for some support. I hope that they are able to offer something to help.

You are right in thinking it is best to get any side effects checked out and hopefully your post will encourage others to do the same. 

I can understand why you were feeling really fed up. If it would help to talk things through, please do give the Support Line a call. There is someone there from 8am-8pm every day. 

Jane

Hi Maybee60bea925 and a second warm welcome to this corner of the Community although I am sorry to see you joining us.

I am Mike and I help out around our various Blood Cancer groups…… sorry for not picking up on your post but we have the 4 granddaughters staying with as the moment so it has been hectic.

I don’t have Myeloma but for some context I was diagnosed way back in 1999 at 43 with a very rare (8 in a million) incurable but treatable type T-Cell Low-Grade Non Hodgkin’s Lymphoma……. eventually reaching Stage 4a in late 2013 when a second, also rare fast growing type of T-Cell High-Grade Non Hodgkin’s Lymphoma was presenting….. so although my Blood Cancer ‘type’ is different I most definitely appreciate the challenges of this journey rather well.

I have had 2 Allogenic Stem Cell Transplants (June 2013 then Oct 2015) so I do appreciate stomach issues…. I was so sick during my second SCT I developed a significant Hiatus Hernia……The Hernia is so big it actually encloses all my Stomach and most of my Pancreas Gland but it’s dangerous to touch it so nothing will be done apart from in an emergency…… but I am very thankful that the meds I take are helping things at them moment…… If the HH becomes a problem then it will be a challenge what to do!!!!!!

There are a few active members in the group at the moment so let’s look for them to pick up on your post a few have been on Darzalex.

You may find it helpful to call the Macmillan Support Line open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.

For good information do check out Myeloma UK who produce very good information and run various support platforms including their Buddy Scheme, they also have a Support Line on 0800 980 3332

You may also want to check to see if you have a Maggie's Centre in your area as these folks are amazing and most centres do run monthly Heamatology Support Groups, the one I attend does have a few folks with Myeloma in it so worth checking.

Always around to help more or just to chat.

Dear Jane and Mike,

Thank you for your kind words and taking the time to reply.

I don’t know if I was expecting anyone to reply, as side effects from Darzalex go, I think bile acid reflux is rare.

 I saw my consultant this morning, after reviewing everything, bloods, side effects etc, she thinks it’s time to stop this line of treatment. I feel as if a huge weight has been lifted off my shoulders. She has made the decision for me. I already feel a huge mental shift. I had cycle 44 last week, so will take some time to get the dugs out of my system, but hopefully, I will make a good recovery and start feeling like the old me. 

Wishing you both a peaceful day 

Julia