Good morning. I assume your partner started on Velcade due to kidney problems because the usual first treatment is CDT. I wouldn’t worry too much about the next treatment options as there is several available. Either standard treatments or newer drugs available through trials. Revilimid hasn’t been completely removed from the CDF and is available…[Read more]

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 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]

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

Hi Helen.

As you say I’ve been proper poorly. I’m now recovering. I had pneumonia and sepsis and I think I sailed a bit too close to the wind. As of now I’ve restarted my pomolidimide and Dex. Though the Dex is only at half strength whilst I try and get walking again.  I feel lucky and okay. I’ve got shakey hands and hardly any strength but most…[Read more]

Good morning Helen.

I’ve had a bad Dex night myself. Had a few other steroids thrown in too for good measure!

We we’re suppose to be going to Greece this coming Weekend unfortunately I’ve been in hospital since Thursday night with pneumonia! Not the ideal preparation for a holiday and definitely not something that should be on any MMers to do…[Read more]

Hi Dusk.

We don’t plan our holidays around my cycles and I don’t stop taking my drugs whilst away. That means I’ve been popping the drugs almost constantly since diagnosis October 2011. That’s a lot of harsh chemicals that have passed through me! I know when POM is no longer effective my options are limited and I will move onto some harsher drugs…[Read more]

Hi Dusk.

I was on RCD for 22 cycles and I was always neutropenic. My neutrophils dropped to  0.5 a couple of times. I was told to give the Cyclophosphamide a miss for a week that’s all.

As to living with low neutrophils I made family and friends aware how dangerous it was for me if they turned up with infections. I steered clear of busy pubs or…[Read more]

Hi Jo.

Sorry Pomalidomide is causing you problems. The side effects you describe sound very much like the ones I suffered whilst I was on Revlimid(Lenalidomide). My neutrophils were rarely over 0.8 and sometimes dropped as low as 0.5! Hopefully your light chains will stabilise and you can continue with Pomalidomide.

My bloods have all recovered…[Read more]

Hi Cartdaw.

I remember my time on CDT and it wasn’t pleasant at all. I was in and out of hospital all the time. I hope your harvest goes well and you get the millions of the beauties you need quickly. Then go on to a very successful SCT.

Every day is a gift.

Andy x

Hi Jo.

Welcome to the wonderful world of posting. It can be daunting at first but I believe everyone has insights and advice that will help others. Questions posed maybe the same as others, who are just readers, who are a bit reluctant to put fingers to keyboard so every little helps as a big supermarket are keen to tell us.

What are your mixed…[Read more]

Hi Carol.

I’ve just started my 22nd cycle today and still no major problems with Pomalidomide side effects. I had a bout of cramps yesterday in the usual places! My lower left leg and my fingers. I can laugh at my finger cramps as they’re not too painful just awkward but my leg cramps are another matter! Fortunately I don’t get them every…[Read more]

Hi Noel.

That all sounds very good to me. Fingers crossed it continues that way.

Every day is a gift.

Andy