Adrian – I’m feeling a lot better thanks. I think being at home makes the recovery a lot quicker despite the side effects still kicking in. The nausea and tiredness is up and down  but thankfully much less than when I first came out of hospital. My ears pop or need popping every so often and today my left ear feels like it’s all bl…[Read more]

Rob/Adrian – hope the SCT has gone to plan. What day are are you on? I’m on day 16 and finally got home yesterday. Tough couple of weeks and still a long way to go but I’ve stayed positive throughout even on the dark days of nausea and a very sore throat. Whatever stage/day you’re on guys stay strong…[Read more]

As for things so far re SCT the initial cyclophosphamide wasn’t too bad – I did feel queasy and was sick the morning after just the once,…[Read more]

The tastebuds may change from time to time but hopefully the water one for you won’t be long. Do you have to drink a certain amount each day- most of the time  it’s 3 litres. Because the myeloma had hit my kidneys I have to make sure I drink at least 3 litres a day (I try to do 4 plus) I’m used to it and it can be boring but when I d…[Read more]

Roll on Thursday 1st June.

Richard

Glad you’ve got your stem cells and are in soon too. I did have bad pain for about 24 hours from the injections. It was very strange almost like every time my there was a beat from my heart it shuddered through my body. I was told it was all ok and was actually a good thing…! No pain no gain.

Have you ever been asked about having a…[Read more]

This is my second topic in the last 6 months-my first was asking for support/advice having just been newly diagnosed at age 48.  6 months on my thoughts and anxieties are focusing on something else now. I am about to have my SCT on Thursday next week at Ward 44 of Manchester Royal Infirmary.  I have now been offered to do a tand…[Read more]

I hope we are all well.

Andy-I hope today went as well as it could. I too have had cycles of VTD- 6 in total. I’ve just started the SCT process and had my stem cells taken out yesterday. I’m back in hospital next week for another chemo and then a return of some of my cells. Like Rob said any questions or advice just ask. The best…[Read more]

Alex – how are you getting on with the removal of your spinal brace? I bet it’s a massive relief to get some freedom.

I hope you’ve also managed to get your SCT timeline too. Mine is scheduled to start on 2nd May-got details this week – BUT – my paraproteins went up a little last week and although they…[Read more]

Hope we’re all doing ok. Still waiting for SCT but fingers crossed for end of April start. Had a wobble at the weekend – temp spike so ended up in A and E. All sorted but it was a close call today as my infection levels had gone up so they were hesitant about giving me the treatment-luckily they did. My kidney scores went back up. They…[Read more]

Now hoping to have my SCT at the end of April if all goes to plan following my meeting at Manchester Royal. No news on if I’ll be having a second one but consultant in Oldham wants it to happen. We’ll see. Didn’t get any results re my light chains last week but my kidney scores are…[Read more]

I’m on cycle 5 of VTD-just started today. Pretty much the same as Rob – 4 visits but over 21 days. Just got a text from Manchester Royal today for an appointment to talk about Stem Cell Transplant. This is good news and hopefully can come soon but I may need more cycles after the 6 planned.

My side effects are pretty…[Read more]

Hope Graham’s appointment is good next week too.

Richard

Glad all good with Graham. It’s great that his treatment worked well first time and I’m positive it’s doing the same for me. We too were in Oldham on a Monday- start of cycle 3. Seeing the main man next week with some good results I hope!!

I’ve been told I’ll be going to MRI for my SCT. The isolation room sounds interesting- I…[Read more]

Adrian-how has your treatment gone? I hope it’s doing the job. Has your consultant said how many cycles you may/may not have.  Mine…[Read more]

I suppose I’m still at an early stage of things and still trying to get my head round it all. One thing is that I am staying positive-as well as I can be anyway,…[Read more]

I met with my consultant today and just want him to crack on but I had to ask him about figures and protein levels to try and get some understanding of it all. Not sure how much it sunk in but I’ll have to be careful that I don’t get fixated on numbers as if they…[Read more]