[susieParticipant]

Hi

I’m half way through my 3rd cycle of velcade, prednisolone and melphalan at 1st relapse. It’s affecting me very badly and I’ve spent the last two and a half months feeling awful. It certainly doesn’t help living on my own, its on my mind the whole time and its made me so depressed with panic attacks. My GP has started me on citalopram but said it will take a few weeks to take effect.

I am so down I am beginning to feel it’s not worth it. Before treatment started, I was feeling very well and the consultant started me on it only coz my paraproteins, which had been slowly rising over 2 years, had reached 54. He did no imaging or a bone marrow. When I mentioned these tests, he said no point coz I need the treatment anyway whatever those they may show. I found it puzzling coz I always understood those tests were meant to be done.

I’ve made my mind up I want an extra weeks rest period at the end of this cycle so I can go away for a few days. Both to let my body fully recover and also to give me a mental boost. I don’t think that is unreasonable. I fully expect them to try and persuade me to stay on schedule because it seems they go purely on their protocol. There seems no alteration for the individual.

I’m sorry to rant on. I just needed to vent. I hope all of you on treatment are not suffering too much.

best wishes

susie

[cygnetParticipant]

Hi Susie

I’m sorry you are suffering so much and send lots of love and hugs . I hope some other people who have experienced this regime will post  with suggestions to help you feel better.

I have not had treatment yet but everything I read seems to say it is very individual. Maybe it is worth you chatting to the  Myeloma UK nurses on the helpline to see if they can help you formulate your argument for a break if you feel you need it? You should feel your voice is being listened to by your medical team.

Are you near a Maggies Centre? They offer good support – online too if you want to access it.

C xx

 

[greg777Participant]

Hi Susie,

Really sorry to hear your news, I really hope it starts to get better soon.

The only thing I can offer is whether some of the depression and panic attacks are down to prednisolone? I am not saying the emotions are not real, just that when I was on pred, everything was much more intense – steroids are known to do that and I think you said in an earlier post that you were on a high dose? Things did get better when I came off it.

You could also maybe ask your consultant about psychological support? I did, and it really helped me out.

All the best,

Greg

 

[susieParticipant]

C & Gregg

Thank you so much for your replies.

I shall be phoning the info nurse about my having am extra week break. I don’t see it can make a lot of difference. My PP’s are down to 18 from 54, so one extra week surely can’t be detrimental.

Unfortunately I’m not near a Maggie center. Wish I was as I’ve heard such good thing about them. I did go to a support group at a different hospital about 20 miles away but I found them very “clicky” and there was no one from my one.

I wasn’t like this with my first treatment (RCD) it’s relapsing that has hit me so hard but no doubt I’ll get through it, we don’t have a choice do we.

Thanks again and my best wishes

susie

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