Trust me, you will get through this! I was diagnosed with MM aged 43, I’ve been through chemo and last January had a SCT.  No denying it was tough at times but you will get back to normality.  I was back to work in April last year, didn’t expect that and now I’m living my life the way I used to, before this all started.  At times you fe…[Read more]

Thank you so much for your post and take your advice about mouthwash. I feel so anxious at the moment, i’m unable to concentrate on anything, feel very low and sickness seems to have returned. I wish i could get my head around this whole thing but at the minute it seems very consuming. Sorry to sound so negative, really want to feel more…[Read more]

For those of us going through chemotherapy treatment, or like myself,  just finished treatment (awaiting SCT in January), you may have found that your skin becomes very dry and scaley.  I’ve just been sent some wonderful cream by my equally wonderful Sister.  It’s called Udder Cream by MooGoo.  Apparently it was originally developed  for cows…[Read more]

I’m being treated at the Freeman Hospital in Newcastle, my consultant is Professor Graeme Jackson. I couldn’t ask for better care by
Both Professor Jackson and the nursing staff. You said in your post that you have maintained a good quality of life, that’s so good to hear. My concern is that whilst i’ve been on this treatment my…[Read more]

Just been started on Fluoxetine for anxiety and depression. I’m feeling nausous, dizzy and generally lethargic since starting this although not sure if the chemo is still affecting me although nearly 3 weeks post chemo. I just wondered if anyone had any experiences with this medication and how they felt taking it.

Julie

Thanks very much for your reply. I know what you mean about the shakes when taking dex., just a couple of weeks ago the side effects of this steroid became really awful, felt very agitated and generally anxious and unwell. I’m finished treatment now but still not feeling great. I’ve been prescribed Fluoxetine for anxiety which i think…[Read more]

Yes i have just completed four months treatment on the myeloma 11 trial and carflizomib was part of this treatment. This has worked extremely well for me. I am due to have sct in January. I can’t say that this treatment has been easy for me but that may not have been due to the carflimozib. Can i ask you how you have found treatments, its…[Read more]

Thank you so much for your positive and informative response.  I felt a lot better when I read it. I have sct on 6 January so hopefully have a few weeks not on treatment where i feel well before i need to think about it. You mentioned about the nausia, can i ask how long it lasted for you. I was hoping that it would have passed by the…[Read more]

Thank you so much for your response.  I think I may have turned that corner now, it feels great.  I was able to go to my daughter’s 5th birthday party today, a few days ago I didn’t think I be able to.    Following the stem cell transplant, when you were discharged from hospital, were you still feeling poorly or were you able to ‘fun…[Read more]

I’m relatively new to this site and just wanted some advice.  I’ve just completed a course of chemo, it’s been the myeloma 11 trial with carfilimozib, dex, revlimid and cyclo.  It’s been a very rough ride for me and I’ve found it extremely difficult.  I’m now just waiting for the meds to get out of my system having had my last iv chemo last Tu…[Read more]

I was diagnosed with MM in July this year, complete shock as no real symptoms to speak of.  I’m on the Myeloma VI trial, just finishing my fourth and last cycle before SCT in January.  I’m finding the treatment very tough at the moment with side effects of the chemo.   Try to stay positive and take comfort from some of the stories on thi…[Read more]

You’re absolutely right…..having kids gives us the strength and will to fight this disease.  I often feel guilty that I’ve subjected my family to this.  My Daughter is only 4, nearly 5 and needs her mum around for a lot longer yet.  It’s what keeps me going.

take care

Julie

Like you, we have kept the information to our daughter very simple.   We kept it completely from her at first but then I was admitted to hospital for a week so we had to tell her something.  She actually coped with the situation far better than I would have imagined.  We’d never been apart for even a night so I thought she’d fall apa…[Read more]

I have the same too, a metallic taste in my mouth.  I think it must be quite common.  My food tastes altered and I no longer enjoy a glass of wine or gin and tonic which is a pain.  Hope your treatment is going well.  I started treatment 3 months ago, at Freeman, Newcastle.  It’s been a bit of a bumpy ride but hopefully we’ll get there.  Take…[Read more]

You’re right, Professor Jackson  and the team at the Freeman are great and I have absolute faith in their treatment of me.   I find that the insomnia is a bit of a problem, I take sleeping tablets every night which helps me drift off to sleep but then I wake up in the early hours and can’t get back to sleep….what I’d give for  full nig…[Read more]

Thank you very much for your response, you sound very positive and that’s just what  I need to hear right now.  I’m new to this site and it’s taken a long time for me to even discuss my diagnosis.  Just thought I’d share with the forum that my light chain level has come down from 29,000  to 1 so my treatment is definitely working.  Wond…[Read more]