Hi All.

Just a little progress report.

I’ve started my next cycle of Pomalidomide cycle 24 I think and tonight is my Dex night 👀 so I may ramble on a bit or a lot. 😊

Ok progress – I’m feeling a lot better eating and drinking is almost back to normal well myeloma normal. I had a major breakthrough and big boost last weekend in that we went out…[Read more]

Hi David.

Sadly I think the chances of them altering their stance are slim and if they do it will be too late for some.

I know quite a few MMers on here, Facebook and Twitter who are running out of treatment options and the removal of Pomalidomide has come just when they were hoping to move on to it! I myself have been on Pomalidomide for nearly…[Read more]

Hi Potterman.

Looks like your post has been overlooked which is unusual.

I personally haven’t been on VCD though I’ve had several others ie. CDT, PAD, DTpace, Revilimid and Pomalidomide which is my latest treatment. Only Revilimid and Pomalidomide have had a meaningful response for me and have managed to keep my myeloma stable. So I’ve been on…[Read more]

Hi Angela.

It is pointless having vaccinations before a SCT as the high dose chemotherapy will wipe out the vaccine. After the SCT you will be given advice as to when it is appropriate to retake the vaccines including all the childhood ones as well.

I’m not sure if your mums age will have a bearing on the speed of revaccination. I think she will…[Read more]

Hi Eve.

Sorry I haven’t replied sooner but I’ve been a little preoccupied the past couple of months.

I’m really glad to read about your travels through England and now France you seem to do all the right things. Since we met on here you have always been a great contributor giving advice and relating your life with Slim including the bad times as…[Read more]

Hi Maureen

I think it’s a great decision for you both to go away for a few days in Harrogate and just enjoy yourselves, especially with the weather still being quite mild. Relaxing on holiday is such a good way to unwind, relax and forget about myeloma concerns.

The first Velcade cycle was eventful. The nausea medication is excellent, which…[Read more]

Glad to hear you have a date for admission.  Good luck with the SCT. I did the sucking of ice cubes etc whilst Melphalan was administered. The nurse told me that you have to keep mucus membranes cold to reduce blood flow not just during administration but for 6 hours afterwards.

Best wishes Karen

Hi Graeme

Just a quick note to let you know that my October blood tests show that my myeloma is still undetectable and in complete remission.

As you can imagine, I’m very pleased about that.

I hope you’re progressing well too.

Best wishes
Michele

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]

Jules, you seem to be going through a lot of emotions at the moment, no one in our situation should have to do that!
Why not contact Macmillan, they are very sympathetic and very capable of giving good sound advice, particularly how to access financial support and carer support.In the past we have found them to be very helpful.
Wish you all the…[Read more]

Evening Mojo, I was 68 when I had my SCT. I live in Leicestershire and attend the Royal Infirmary. I was in hospital for three weeks during the SCT, Returning home was very strange and unnerving, guess I was institutionalised! My wife is my carer, and although I am very active and do as much as I can for myself I did find that I was reliant upon…[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]

Welcome back Andy, you’ve certainly been through the mill, did not realise how seriously ill you really were.
Hope you continue to improve, take it one day at a time, you will get there.
Thinking of you, best of luck.
Tony F

Hi Andy,

Sounds like another near miss, if a cat has 9 lives how many have you got? Good to know you’re on the mend.

Richard

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]

Just a little update I ended up in intensive care as I wasn’t over it and they had to sedate me and put me on a ventilator. It was touch and go for a while but hopefully I am really over it now I just have to learn how to walk again.

Every day is a great gift.

Andy x