Hi Vicki,

The Mephalan is there to destroy the MM and unfortunately it is non dicriminatory so does literally destroy the good cells as well. There is not a lot that can be done, it’s down to the medics now and Colin. Sorry I can’t be more positive, you just have to sit with it and I expect the medics are doing their bit as well.

Hi Maureen,

Sorry to hear Iain’s back in, still it’s probably the best place for him. As for me, my Heamoglobin dropped to about 10 so they were a bit concerned. I had another blood test last week, while they recovered my Leucocytes have dropped now. Still not doing too badly. I had the mock exam a few weeks ago and scraped by – blame that on it…[Read more]

Good news he is home, there will be a couple of ups and downs but make the most of it.

Richard

I’m afraid we all go through the “have I, haven’t I stage” There is not a lot you can do about it. Be aware that some people have non secretary MM, that means it won’t show up by an increase in protein level in the blood so your husband may have to give a large Urine sample (taken over 24 hours) and a Bone Marrow Biopsy. All the best and I’m sure…[Read more]

Hi there,

Yes blood tests can fluctuate although not by very much. Another factor will be if the samples are tested by the same laboratory. Different equipment will give slightly different results.

As for the cold, ear infection and sinuses, I’m afraid I had the same before diagnosis. I blamed it my daughter bringing home allsorts of weird and…[Read more]

I wish you both well. It’s not easy – for the partners as well as the patient but others have done it and there is no reason why you can’t. Just lots of TLC required afterwards and expect the odd hiccup.

Richard

Sorry to hear about your dilemma, At least they are still talking of options and who knows, Colin may be invited to take part in some new trial or treatment. We just don’t know what’s around the corner. Although I have found the doctors here very good at putting a positive spin on everything, I also found them to be realistic. Your consultants…[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]

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 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]

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.

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]

Just to add to what Andy has said, my PP level since SCT January last year stabilised at 24, I have not had any treatment since. They have only just started to go up but my Kappa light chains are well within limits, heamoglobin, lucozydes and platelets are all well within normal range. On this basis I will go back next momth for another blood test…[Read more]

Just a thought, for many of us, post diagnosis, our lives change so much. We don’t work as much if at all, we don’t carry out everyday mental tasks that we use to because we are physically unwell and we tend to do as we are told by the medical experts rather than question them. After all, in normal life if someone told us to do something that was…[Read more]

I remember when my father died in 2001 that I wasn’t there, neither were my two sisters. My mother was there and my brother, we know that he died painfully – he’d had a stroke and finally died from pneumonia. I don’t regret not being there. It was not easy for my mother and if I were there I would have walked away. This to me is normal as we as…[Read more]