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]

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 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]

Hi Sandra.

I’m also sorry you haven’t had any replies though I must admit I don’t frequent the forum as much as I used to. I should try harder.

As Ellen has said myeloma can and does cause kidney damage by blocking the fine tubes of the kidneys. Hence the need to drink two to three litres of fluid a day, mainly water, to keep the kidneys…[Read more]

Dear dear Vicki.

We are so sorry to read about Colin’s death.

I do hope you are getting plenty of support at this terribly sad time. I hope your legendary strength can get you through the coming weeks.

Lots of Love.

Andy and Steph XXXX

Hi Bijou.

The lesions by themselves don’t necessarily indicate you have myeloma. That’s why other tests are required to confirm it’s myeloma.

Treatment, if you have myeloma, will be given if you fulfill certain criteria it’s called CRAB I think it stands for Calcium, Renal, Anaemia and Bones. If you don’t fulfill the criteria you may not need to…[Read more]

Hi Ben.

My myeloma didn’t respond enough to the normal first line treatments CDT and PAD (velcade) I was quoted the minimum requirement was a 50% fall in PP count for a SCT. I was then tried on DTpace which was another failure. Next in line was Revilimid and Dex and an appointment with the Professor who ruled out an auto SCT and suggested an allo…[Read more]

Morning Bijou.

Have they told you that you’ll be staying in? I’m not sure why you’d need to. I’ve never needed to stay in overnight for tests. A BMB( bone marrow biopsy) doesn’t take long. It’s just a big needle into the hip bone. It’s uncomfortable some say painful it all depends on your pain threshold. I only have a local some have gas and air…[Read more]