Great to hear from you Andy! Your vigilance paid off, and sheer willpower and determination (and great doctors it sounds like).
No need to reply but I hope the walking is progressing well and wanted to say hello (been wide awake on Dex all night so back on the myeloma sites catching up!)
Every day is indeed a gift, so enjoy today and here’s…[Read more]

Hi Gill

Well except for Jean and Fiona we are widows,!!
And we all know it catches up with us at sometime,we are watching Tom going through his second SCT,and Wendy a SCT from a babies cord,so it must give a lot of hope for people treading in our footsteps.

Gill may I recommend Way Up to you,it’s not for everyone,and it does have a Facebook way…[Read more]

Food for thought

Hello Fiona and Helen

Fiona I find it easier just to let my mind flow,never rewrite anything again,so you get me as I think,plus my terrible grammar and spelling,but it’s the true version, warts and all as they say.
I do look in to UK Myeloma more mainly because it’s easier to follow,also having faces on there helps,you have beautiful…[Read more]

Hi Andy

You have certainly had an extremely tough battle to fight over the last few weeks dealing with both pneumonia and sepsis. Do you know what caused the sepsis? I can’t imagine how poorly you have been whilst undergoing intensive care treatment. Both you and your family must be so relieved that you are now on the road to recovery. Take it…[Read more]

Hi Helen

On Monday I started the first day of my cycle with the cyclophosphamide tablets and Velcade injection. It must be such a shock for our bodies to take so many different types of tablets. The nausea tablets appear to be working during the day, but not the evening. I took the drugs about an hour before taking the cyclophosphamide tablets,…[Read more]

Hi Maureen

You both must have been so frustrated when Ian was not allowed cyclophosphamide with his Velcade drug regime. From the last four Myeloma UK Information days which I have attended, one of the main messages from the consultants always appears to be that a mixture of three drugs is better than two drugs when treating myeloma patients.…[Read more]

Dear Eve
I’m so glad to see your face brighten up this page, I’m trying not to be so addicted to the iPad and ration my sessions a bit, so I missed your post! And anyway since my last relapse my story isn’t really a ‘good news’ story so I’m more reluctant to post! I wish I had more of your bluntness.;) I can’t do Twitter and am banned from face…[Read more]

Hi Susie
Sorry this is so tardy, I don’t have any pps. My pp at diagnosis was 2.9 and light chains 800. But bone marrow around 60% myeloma with some lymphoma characteristics … Such is the individuality of the disease. Since then when I relapsed treatment started again when my light chains got to 30% of the diagnosis number and bone marrow at…[Read more]

Hi Jan
I’ve just been reading your post to Maureen and see that you are now starting the Velcade, hope this all goes well, pace yourself with it, the fatigue I find is still very unpredictable. And go for walks with lots of tea stops! I did find it a bit nippy with the pn in the feet but it always settled down with the week off, and if you are on…[Read more]

Dear Maureen
I’ve not been on here for a while but I’m delighted to hear that Ian is as well as this, you must be very relieved and happy. Get all those holidays you missed booked and enjoy the sunshine.
Love Helen

Hi Jane

You must have been so relieved to have achieved two good lengthy periods of remission following your two SCTs. Hopefully your light chains might only slowly increase after your last treatment, which would give you more years of remission. Had you previously used Velcade as part of your SCT treatment? What happened to your light chain…[Read more]

Hi Gill

So lovely to hear from you. It is hard to believe it’s been 3 years since Stephen died. I always read your posts and especially about France. One thing has stayed in my memory – the thread was travel insurance – and part of your post was ……. And Stephen said “I’m not going to wake up in the morning with a severe case of Myeloma ”

I…[Read more]

Hi Roseanna

I think it depends on the hospital. When my hubby was in for SCt, for about 1 week I was the only one allowed to visit him. Before I went into his room I had to go into an anti room and put on a gown and gloves. Every time I left his room I had to go through the same thing. He didn’t and at times couldn’t eat, so,I brought in his…[Read more]

Hi Maureen

It’s such a good feeling when you are able to go away and relax on holiday following successful treatment. I’m glad you both enjoyed yourselves in Ibiza, especially with Ian managing to spend some time swimming. Since my vertebrae collapsed, I find it impossible to sleep on my front or swim breast stroke/front crawl. Like Ian, I…[Read more]

Hi,

It is a difficult decision of when to restart treatment, because you want to maintain your present quality of life, but equally you don’t want the myeloma to damage your bones or kidneys. Presumably your consultant wants to take a bone marrow test and scans to see what is the level of activity in your bone marrow and to detect any bone…[Read more]

Hello Helen

I really appreciate your heartfelt good wishes, especially as you fully understand the variety of emotions and side effects which you can experience when approaching and going through relapse treatments. It’s good to read your news that pomalidomide is working for you. Long may this continue.

Approaching a new drug regime is…[Read more]

Hi Andy are you better now? I’m languishing here with an awful cold, hoping it doesn’t materialise into anything worse! I’m about to cancel my lunch date and head back to bed- I hate feeling ill!
I’m on cycle 12 now and I’m still ok on it
Love Helen

Dear Jan
I’m sorry to hear about the move to treatment again- you will find it manageable but it’s such a blow to know that it has relapsed to this extent, even though it’s been on the cards for such a while. I found Velcade a bit unpleasant- it gave me peripheral neuropathy the 2 days after I had it, but always settled back to normal every cycle.…[Read more]

Hi Helen

Unfortunately last week’s light chain results increased by a significant amount and I was called back into clinic. I start treatment as soon as the hospital can organise the start of my twice weekly velcade injections. Came home this evening from clinic with a big bag of drugs, which certainly brings back not so fond memories of the…[Read more]