Hi All
I live in Torquay and was diagnosed with Myeloma in Dec 2023.
I have a great consultant at Torbay Hospital who work in close liaison with Derriford Hospital in Plymouth. I have just had my stem cells harvested at Derriford as a day patient. Successfully thankfully. I will be admitted to Torbay an an inpatient later in the month, have my chemo administered here, then transported via ambulance to Derriford for the reinfusion of my stem cells.
So far I have no complaints about treatment in the very South West. I also have Sjogren’s Syndrome and we moved here in 2015. I was under the consultant at QA Hospital, Cosham and the transfer from there to here was seamless.
I can highly recommend life in the South West!
Hi
Thanks so much for this. Extremely reassuring.
Do hope that you are continuing to feel well and enjoying the post SCT euphoria.
I’ve just had my stem cell harvest. My husband was with me and like you I was hooked up for 5 hours! I had an amazing result of 5.2 The only issue I had was a calcium crash part way through. I started feeling hot and faint. Obs were clear. So you lie there thinking I feel really not right but am I making a fuss? The nurse gave me 2 calcium tablets to suck and as if by magic I immediately felt better.
I have a date for reinfusion of 2nd August. They’re avoiding my 60th birthday which is at the end of July..Bless them. Our daughter, Sophie, who is 20 has arranged for a coffee and cake sale at my church to raise money for Myeloma UK and I didn’t want to miss that.
We live in Torquay but the harvesting and Stem cell reinfusion is done at Derriford hospital in Plymouth. So I will become an inpatient at Torbay and given the Menphalan (?) there then transported to Derriford the following day for reinfusion.
The only thing I am really worried about is being sick as I really hate it. But you have reassured me that although this is more than likely to happen it doesn’t go on for ever! So thanks for that.
Really appreciate your response. I’ll let you know how it all goes.
Very best wishes
Sara
Hi
Thanks you for your lovely response and sorry I didn’t spot it sooner!
I was originally diagnosed in December 2013.
I have Sjorgren’s Syndrome. (I don’t expect you’ll have heard of it, but it’s one of those autoimmune conditions!) and inflammatory arthropy. I was having 6 monthly Rituximab infusions to help my joints. These started in 2018 and basically gave me back my life. No more joint pain although the fatigue and brain fog were still evident. The regular blood tests showed up a problem with my IgA level so I was referred to haematology. Ct scans showed nothing and I had no symptoms that I was aware of. As my levels were still rising I had another Ct scan which again was clear so they requested a bone marrow biopsy. This showed the Myeloma.
I had understood that the Myeloma was smouldering although it was still something of a shock and a lovely Christmas present!!!!
In February my husband, Martin and I went to meet my new consultant and were rather shocked to hear that they wanted to start treatment immediately!! I opted for the RADAR XV because, well why wouldn’t you. The bone marrow biopsy was uncomfortable rather than painful so the fact that I would have to have more didn’t worry me.
Unfortunately the dental check up before treatment could start showed that I needed a wisdom tooth removed. I have to admit at that point I did have a bit of a sense of humour failure, but it was all arranged through the hospital, done very quickly and I had no problems.
The 12 week induction chemo was fine.
I had my stem cell harvest on Monday and reached the sum of 5.2. Applause all round. I had a bit of a calcium crash part way through. I started feeling hot and faint. Obs were fine. So you lie there thinking I really don’t feel well, but am I making a fuss? The nurse gave me 2 calcium tablets and as if by magic I immediately felt better!
So now I’m waiting for the SCT. I have a date for reinfusion on 2nd August. It’s a bit complicated here as I live in Torquay and the harvest and reinfusion are done at Derriford Hospital in Plymouth. So I will be admitted to Torbay and ambulanced to Derriford!
Really reassured by your comments re your SCT but would like to know the really bad bits.
I haven’t been to church since starting the induction chemo. But my vicar came and gave me home communion last week, which was lovely. I’m in 2 minds as to whether to go between now and admission to hospital and would welcome your advice on that, although I appreciate that we are all different.
I have a BIG birthday coming up at the end of July and my 20 year old daughter, Sophie has arranged a coffee and cake sale at my church to raise funds for Myeloma UK. She wanted something positive to come out of my diagnosis.
I too have a rock for a husband. Where would we be without them?
My faith too means that I have felt at peace throughout. Although I am rather apprehensive about the next bit!
Thanks again for replying.
Sara
Hi. Thanks for that a really full explanation.
It would be good to hear how your stem cell transplant experience was too but as you’ve only been home a week… perhaps when you’re feeling up to it! Reading on here it’s obvious that experiences vary widely but all the very best with your recuperation. Glad everything had gone well so far. x
Hi All
I’m in week 11 of DVD and putting on weight!!!! At least half a stone at the last count. I just feel so hungry at times and crave sweets. We were following a low sugar diet before diagnosis but I’ve made a conscious decision not to worry about it and thinking that after the SCT things can revert to normal. We do have a healthy diet apart from the sugary treats!
Hi All
Really helpful stuff.
I’m currently on week 11 of my 12 week induction chemo.
Interesting reading about your eye deterioration. I was diagnosed with Sjogren’s Syndrome in 2007 and dry eyes is a part of that I’m finding that the chemo is making my eyes drier and slightly more blurry but am just using my Theoloz Duo eye drops more often. I have an eye test booked for a couple of weeks so it will be interesting to see if they pick up on anything. I was on Hydroxychloroquin for many years and had regualar check ups with the opthalmologist at Torbay but sadly no longer, due to funding, so I’ve weened myself off it.
I have opted out of attending church and singing in South Devon Choir just as a precautionary measure. Although I still do shopping and go meet up with friends for coffee.
My chemo is on a Wednesday and Wednesday night after the Dexamethasone I am zinging and get no sleep. Weirdly I am able to relax and feel rested but because of the Sjogren’s I haven’t been able to work for a number of years. Brain fog and fatigue are a major component so this is something I haven’t had to adapt.
I do get really red and burning cheeks on days 1 and 2 after chemo. But again this happens with Sjogren’s particularly whilst singing or when I’m nervous. My hands are ice cold which is helpful in calming it down and as that’s the only side effect I’ve noticed I think I’ve got away very lighlty.
