Having the blood test on the Friday prior to the next Tuesday makes a lot of sense, doesn't it? I might try suggesting that in Nottingham. Thanks for sharing, Mari.

Thanks Helen.

How are you getting on? Am I right in recalling that you had your SCT a month or so before I had mine? Or am I mixing you up with someone else? Sorry, I've been a bit out of touch.

Hope you're doing well.
Jet

Hi Eve

I have just started on Velcade cycle 1, as my remission following the SCT failed very quickly. Velcade is currently being administered by injection, but at Nottingham they are well on their way to being able to administer it subcutaneously. I'm hoping 2nd or 3rd cycle.

I was warned by the specialist nurses that the worst bit would be…[Read more]

Tom, it's absolutely fine to ignore a post that doesn't relate to you.

I don't consider being lesbian a sexual preference, it's more complex than just a preference and I think that's true for most lesbians and gay men. But this is not the place to go into sexual politics. Suffice to say, that I would not need to explain this to someone who…[Read more]

I don't know if this is of any help whatsoever. I've not done any research or asked a doctor about it. But I was looking at information about Vitamin B and noticed that B12 deficiency can result in Peripheral Neuropathy, so I just wonder if taking B12 might help counteract PN…?

Hi David

Yes, Revlimid is in capsule form. The trial protocol is for 25mg per day, but my consultant was keen to give a lower dose, as the lower dose has been found to be effective in previous trials at the maintenance stage. So, due to my decreased kidney function, she was able to prescribe 10mg per day, with the option to reduce it to 15mg…[Read more]

Hi Helen

In answer to your question about how long it takes to get over the SCT… think of a piece of string. As you must know by now, and as we ALL have learnt, everyone is SO different. It would seem that the younger and fitter you are prior to the SCT, the easier it goes, but it so depends how you respond to the chemo, as those symptoms…[Read more]

Hi Helen

I had my laptop in hospital with me and could write my blog, access emails and Facebook via the hospital's wifi system. There was no issue about germs at all. In fact, the specialist nurse was the one who mentioned I could take the laptop in with me. The only thing your mum would need to check is whether there is internet access.

To…[Read more]

Hi Keith

Glad to hear you're doing well. Sorry to hear about the itching. These things DO matter… quality of life is important. But hopefully, you can get something to manage it? Do ask… A Canadian woman with leukaemia wasn't told by her doctors about easy-to-access (from a pharmacy) products to help with dry mouth and dry eyes from GVHD,…[Read more]

Ah, it's not the same woman I mentioned, but glad to hear your Dr Feyler is also an excellent consultant.

Debs

You say Nick used to sell HRT. Could you share his reasons for not wanting you to take them?

I saw my GP about the possibility of taking HRT, mostly due to feeling tearful and depressed. She thinks it might be helpful and has prescribed them, but I'm reluctant to take them. I'll have plenty enough pharmaceuticals in my body when I'm…[Read more]

Hi Paul

Like you, I have light chain myeloma and yes, I had to laugh when you said the 24 hour urine container was a bit intimidating. One time they asked me if I needed more than one…! 🙂

I just wanted to ask you or Carol if Dr Feyler's name is Charlotte? I had an about-to-be consultant do my initial bone marrow biopsy in Feb as part of…[Read more]

Hi Alexis

I was on Revlimid for 4 cycles prior to the SCT and yes, I can confirm that like John, it made me very woozey. Several days, I would drop off on the couch during the day. Not an actively chosen nap, but more like slipping away for a while. As I didn't have to work and have no children, I found it quite nice to be able to "go with it",…[Read more]

Congratulations on getting through and out the other side. I'm coming straight after you. Yay for us!!!! 🙂

Just a quick update…

I walked out of the ward this morning, albeit slowly, but I managed a fair walk to one of the on-site coffee shops, to buy some Ribena, which I can just about manage to drink. My throat is still really sore and closed, making it hard to swallow anything. I tried some chocolate, but that really wasn't a good idea. I felt…[Read more]

Well done Keith!

Yes, things are going well for me too, so far. I've written about it under another post that Dai started wishing you and me Bon Voyage! So I won't put it here again.

Hope you continue feeling well. I don't know about you, but I really don't mind the tiredness. It's quite nice to just give in to sleep. I'm just hoping I don't…[Read more]

Thought I'd check in again and let you know I'm ok. No longer on a drip, just being monitored – weight, water in, water out, normal obs, blood. I keep brushing my teeth, using the mouthwash and Nystan oral stuff I have to swallow. So far, just a dry mouth and slightly loose stools.

It's very weird just waiting to be ill… which may or may not…[Read more]

Absolutely!!!!

The period after stem cell collection, with no drugs was great for me. I felt more or less like myself again. I went off to Kent, and a family party in London and last week camping in Wales, plus gardening, cycling, seeing friends.

Use the time to do all the things you enjoy and make you feel good and healthy. Eat good…[Read more]