• Hi All,

    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]

  • Hi Adrian. I’m so glad it has happened and got home just after 2 weeks. I’ve only been back 2 days but I feel so much better already. I’ve slept so well both at night and during the day – more than I’ve done in years! I clearly need it and I’m sure it’s helping me repair inside. I think the nice weather helps even though I’m staying in the shade…[Read more]

  • Morning everyone – hope we are all doing well.

    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]

  • Hi Adrian – glad you’re well and approaching your SCT. I nearly had to have another cycle or two as my light chains started to creep back up but we put it down to a virus but luckily it shifted very quickly.

    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]

  • Hi Andy,

    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]

  • I saw that one thanks Greg, and thanks for the offer of answering further questions/queries if needs be. I’m sure I’ll have some at some point but I need to think about getting this one out the way first really-trying to tell that to myself now.

    Roll on Thursday 1st June.


  • Thanks Rob,

    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]

  • Hi Everyone

    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]

  • <p style=”color: #000000; font-family: UICTFontTextStyleTallBody; font-size: 17px; box-sizing: border-box; margin: 0px 0px 17px; padding: 0px; direction: ltr; line-height: 19.5px;”><span style=”background-color: rgba(255, 255, 255, 0);”>Hi Everyone </span></p>
    <p style=”color: #000000; font-family: UICTFontTextStyleTallBody; font-size: 17px;…[Read more]

  • Hi everyone,

    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]

  • Hi everyone . Hope we are all doing ok.

    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]

  • Hi All,

    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]

  • Great stuff Alex. Pleased to hear you are doing really well.

    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]

  • Hi Chevgr and everyone else.

    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]

  • How is everyone? Hopefully well with treatments going the right way or just feeling good with or without them. Just a quick update from me. Started my forth cycle this week. All going well and got some results-light chains down 90% from the start of diagnosis which is great news even though they are still in the 1000s. I got my scores wrong in an…[Read more]

  • Hi Rob,
    Another person close to me – diagnosis month, age (47 when diagnosed 48 a week later -Happy Birthday! ), treatment and cycle! I’ve just finished my 3rd cycle  of  VTD and all going well as I am sure your’s will. My light chain figures have come down by 75% and that was after 2 cycles. Still waiting for results after the third cycle.  My si…[Read more]

  • <p style=”text-align: left;”>Hi Rob,</p>
    <p style=”text-align: left;”>Another person close you are to me – diagnosis month, age (47 when diagnosed 48 a week later -Happy Birthday! ), treatment and cycle! I’ve just finished my 3rd cycle  of  VTD and all going well as I am sure your’s will. My light chain figures have come down by 75% and that was a…[Read more]

  • You’re right about Dr A Angela. He does like to take things slowly. Hopefully my bloods will be sorted soon. Pain in back has been better these last couple of days-probably the steroids and velcade I hope!

    Hope Graham’s appointment is good next week too.




  • Hi Angela,

    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]

  • Thanks for the reply Adrian. I certainly have a good consultant-the same as Angela’s husband! He’s thinking of at least 6 cycles and my proteins came down to 7 a few weeks ago. Waiting for another result next week. Hopefully even lower after 3 cycles. You’re right about infections. Managed to avoid them even with going in to school a few times.…[Read more]

  • Load More