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

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]

Hi Mike, I am 39 days post stem cell transplant.  I am doing well I think from the feedback at transplant clinic but I guess the BMB after 100 days will tell more.

I just wanted to say sorry to hear that your protien rising but although SCT is challenging,  particularly on the GI tract,  it is very doable. I found the time in isolation was ok be…[Read more]

Thanks for this post Graeme, I am also experiencing a very noisy GI tract post SCT (I suffered severe mucositis) and Jill’s reply is really helpful.

Hope you are OK now.

Best wishes

Karen

Hi, I was on the VTD (Velcade, Thalidomide and Dex) and I think it was by the third cycle I was experiencing symptoms of peripheral neuropathy, particularly in my legs and feet. The Consultant reduced the dose of Thalidomide by 50% for the last three cycles so the symptoms did not get any worse.

I completed the six cycles in June and although I…[Read more]

Hi All,

I was discharged on Friday (three days short of a month in hospital) because just as they were saying I could go home I got a chest infection which was treated with IV antibiotics and added a week to my stay.

It was difficult at times, particularly because I got severe mucositis despite sucking ice pops and ice lollies before, during and…[Read more]

Hi Susie,

I have just come out of hospital after a stem cell transplant. was a tough month but doable and now I have a couple of months recovery to get through. can’t believe how tired I am.

I am sorry to hear that your PP’s are slowly rising after 6 months remission. I agree with the previous poster, rant and rave as much as you need to and I…[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]

Dear Vicki,

I am so sorry to read about Colin’s passing.

Wishing you all the strength and love at this sad time.

Lots of love

Karen xxx

Hi Peter,

So much good advice and helpful information in the previous posts.
I am going in this week for a Stem Cell Transplant and hoping for a longer and deeper remission as a result. The Doctors do have to explain in great depth the potential outcomes for each step of this unwelcome journey we all have to take with a MM diagnosis. Which I have…[Read more]

Hi Simon, yes, I found that I had dry skin on face around ears etc tried all sorts creams, but Boots no7 for men worked really well. A good hand cream for hands and forearms and a good body lotion for elsewhere!
Hope this helps.
Tony F

Hiya Peter, I tend to agree with Annette, listen to the haematologist. I was diagnosed at 67, had a stem cell transplant at 68. Had 26 months completely free of drugs, travelled to USA, Hawaii, Spain, Greece and over the UK. Lived life as one should! my pp’s were at 9 when I relapsed. My age now 71. I have just started on velcade, dexamethasone…[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]