Hi John,

I’ve never been in the position to have a SCT so I’m not sure if you’ll find my point of view valid.

I have wondered what I would do if I was offered a SCT as there seems to be a debate going on to whether it’s the gold standard for treating myeloma. It’s especially being discussed in America but the two camps are divided. Some say…[Read more]

Hi Jill,

I’m on the 4mg dose of Pomalidomide and I start my 18th cycle tomorrow. They do seem to be loading your mum with antibiotics I myself take ciprofloxacin as a prophylactic as I have an indwelling catheter and its to guard against uti’s.

I’d give your mums specialist nurse a ring and ask why the antibiotics have been prescribed.

Every…[Read more]

Thanks Andy,

I’ve only been on the treatment since Wednesday and already I have had the extreme tiredness. the warm sweats, diarrhea and constant itching of the scalp. I am not looking forward to the next few weeks. My concentration levels are really low which is a bit of a bugger because I have a possible mock exam tomorrow and lots of homework…[Read more]

Hi Vanessa.

Unfortunately coughs, cold, and infections are a way of life for us mmers so it’s not unusual. Even when not neutropenia our defences are low. The constant being under the weather will get anybody down and as long as his blood tests come back ok there’s not a lot that can be done.

You can ask for a second opinion and it won’t be held…[Read more]

Hi Richard.

Sorry to hear that you’ve had to restart treatment. Hopefully Revlimid and Dex will do the job for you and get your myeloma back to at least being stable. I was on Revilimid for 22 cycles with Dex at 40mg for the first 4 days per cycle. Unfortunately it did nothing till Cyclophosamide was added to the mix. Side effects for me were the…[Read more]

Hiya Jill.

I’ve been on Pomalidomide for 17 cycles now and find the side effects very mild. I know everyone reacts differently but I’ve been through several different treatments and Pomalidomide is the easiest to live with I’ve had.

I wouldn’t take anti sickness tablets as a matter of course only take them if needed. Cotrimoxazole is is an…[Read more]

You have nothing to lose, If it works you won’t regret it, if it doesn’t you should still get some remission but then will probably have to have it at a later date. Trouble is they won’t allow you to have a SCT after a certain age or if you are not physically fit enough. The few weeks in hospital are a pain but will be a memory afterwards.

I…[Read more]

That’s alright Maureen, The medics tell me that there are not too many side effects and shouldn’t be anything that won’t show up without a blood test. However I’ve found them to be over optimistic here, as if they spend a large chunk of their training on how to reassure the patient. As an example, at my initial diagnosis, my GP said to me that “…[Read more]

Hi Chris

With you neuts. still settling down after your SCT and being on the low side, the main advice I’d pass on is to keep your living areas scrupulously clean and avoid ANYBODY with any sort of germs. You’re very open to infections at this stage and have to be very careful indeed.
If you can really work on building your immune system up now,…[Read more]

Hi Carol’

Glad to hear you’re still doing well, have you taking up surfing with your new appreciation of life post SCT or just enjoying some sun?

I need to read up a bit more about Revlimid but apart from a risk of Thrombosis, it seems to be a good option. With Velcade I only had Neuropothy in my feet and just before the SCT it was really bad,…[Read more]

Oops! meant to say I had dexy with Velcade. I’ve not even started on the stuff and it’s already causing confusion and anxiety.

Hi Jane,

I had dexy last time with Revlimid, that was 20g for 2 days, a day off then 2 more days. My consultant is talking about 40mg just once a week but I have alrteady tried to have it reduced to 20mg, he says he may do after a few weeks. My wife is really dreading it and has warned me not to bite our daughter’s head off.

I live in Germany…[Read more]

Sad but true!

Hi there,
Unfortunately, people not being in contact seems to be the norm. Sometimes, they don’t know what to say, sometimes they feel awkward and sometimes they just can’t be bothered. What does come out of it though is that you do get to know who your real friends are and post SCT, when you start to live again, you’ll know who is worthy of your…[Read more]

Not me either but anything in moderation surely should be acceptable so long as it doesn’t affect the drugs, trouble is it’s what each individual sees as moderation.

When I was on CTD it made sense for me not to drink too much alcohol, but it was my own choice and my specialist didn’t mention anything.

Hi Tony,

The best thing we found was to research what you can. Don’t just rely on a few web sites because they can be very scary. Think about what you want to ask the consultant when you see him/her. Write down questions so you don’t forget anything. Speak to the nurses at Myeloma UK, they’ve really helped me in the past. Take note that there a…[Read more]

Good result all round!