Thank you Ann

I have come along way in the last 5 years, 4 years of Slims illness and 1 year on my own,it’s a big learning curve,and I still look in on cyber friends,see how Tom or Andy plus a few others if they don,t post on the Facebook site UK Myeloma ,I worry. So Myeloma never really leaves my world although Slim has gone.

I just wanted to…[Read more]

When I was going through initial treatment 4 years ago, my husband soon realized that normal mealtimes weren’t “normal” any more and that it was best to let me eat what I felt like eating when I wanted it!

However, drinking plenty of water wasn’t an option to me and I can’t stress enough how important those 3 litres are to help flush through drug…[Read more]

Hi Toby

I’m so pleased my post has helped and encouraged you. That’s just what I hoped it would do for folk on this forum.

In answer to your question, I’m still absolutely fine. I saw my specialist again in April and nothing had changed. Next appointment at the end of October. I’ve spent the year having some great holidays and generally living…[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]

Dear Vicky

I haven’t been on forum for some time. I am devastated to hear of the passing of Colin. My thoughts and love are with you at this very sad time.

Love jean xxxxxxxx

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 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]

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

Hi Simon.

Unfortunately that’s the nature of the beast treatment knocks it down but it always comes back. The time scale varies vastly from one patient to another. Some only get a few months of remission others get years some never achieve remission. They won’t start treating you until the myeloma starts causing you problems. ie bone damage,…[Read more]

Hi Simon.

Unfortunately that’s the nature of the beast treatment knocks it down but it always comes back. The time scale varies vastly from one patient to another. Some only get a few months of remission others get years some never achieve remission. They won’t start treating you until the myeloma starts causing you problems. ie bone damage,…[Read more]

Hi Sandra.

I’ve just realised I replied to an old post of yours in the GENERAL forum doh!

You may get more replies and advice if you start a new thread in the TREATMENT forum.

Like I said in the other post I’m don’t know much about light chains.

The minimum requirement for SCT I was told was a 50% reduction in paraproteins as your husband is…[Read more]