Hi Penny
It's really hard to describe this procedure, no one wants to put you off, but as it is still the best hope for longer remission especially for the younger age group, i felt i just had to get on with it. I'm sure you have read some of our stories and know how different it is for everyone.
It is unpleasant to go through, terrible…[Read more]

Aw Tom, it's a goodie but I think 'thank you' from LZ2 is my choice. Bit smooth but what does that matter to ageing rocker. Love Helen

Hi Carol
I'm nearly 6 months post sct now, I was really well for a few days before the stem cell collection gcsf drugs started so had my hair styled short and went away walking, after the collection ( it took me about 3 weeks to recover from it, I was particularly slow!) I was again very well for about 10 days before sct so we went on holiday to…[Read more]

Hi all

yes I think it could be menopausal Lorna or a bit of both as I know skin changes etc are common post menopause and itchiness does seem to be a comnmon occurrence post transplant. Its actually all getting a little better and my eyes arent quite as itchy or dry as they were.

Regards

Wendy

Amazing! I'm truly impressed with the skill. On a different note, I'd like a bit of Led Zeppelin
Love Helen

Hi Jet
I'm a couple of weeks behind you, mid august. Debs is Ms July! I'm ok, been a much slower recovery than I expected, still tired and have trouble with an unpredictable gut and all the pain and unpleasantness that goes with it, but I'm getting there, enduring the lenalidomide, trying to eat properly and do normal stuff, but it is hard work…[Read more]

Dear Jet
I'm so sorry to hear about your sct, I hope the Velcade works effectively for you.
Love Helen

Hi Gary
I'm with Wendy on this one, myeloma nurse specialist here on the site or at hospital might be able to explain more, does your sister see the consultant alone? If she is this confused she should have someone with her to ensure that there is no misunderstanding. High doses of dex can cause paranoid and depressive symptoms and should be…[Read more]

Hi Gary

Your sister seems to be going through the mill right now with the treatment. I can relate to the blurred vision and the headaches and the paranoia as I had this when taking the steroids (was also on the CTD regime. The confusion I am not so sure about although I do remember a little bit of a fog which I put down to the thalidomide. I do…[Read more]

Hi All

thanks for your replies, yes me too I am hoping that I will wake up one day and wont be itchy anymore but in the meantime I will try your suggestions Shirley for my eyes. I think that they are dry more than anything as when I wake up in the morning, I can hardly open them! So hope the vistotears work.

Best Wishes

Wendy

Hi Eve,

I had two cycles of velcade at the Manchester Royal Infirmary last summer.

I was told to come in for 9am as the earlier I come the earlier they could order the velcade but I think the reality is that they waited for everyone who was due to have velcade to arrive before they ordered it. When I arrived the nurses would take blood but I…[Read more]

Hi Chris
I had complications which are resolving at their rate not mine! I do keep wondering if I've just turned soft but they assure me 'no, just everyone reacts differently' On Friday it will be 1 year since diagnosis day, and it has been very full on since the start. I have apparently been ' very sensitive' to all the drugs and only time will…[Read more]

Hi Peggy
There are some pharmaceutical cool bags available which keep drugs at the optimum temperature during travel etc, I had one at work a few years ago. It would not be impossible to find out from your specialist nurse and the pharmacy department you attend. They are VERY expensive. You might need to approach a local charity to see if they…[Read more]

Hi Sarah
All in one go is good, it took me 2 days but only for an hour on the second day, and the feeling of 'kicked by a horse' lasted for about 3 weeks afterwards, so enjoy the time now before the sct.
My daughter did the great north run last year for blood cancer research and raised a couple of thousand, people do post the links, we didn't as…[Read more]

Dear Chris
I'm a few months post transplant now and looking to go back to work in the next few months. I worked up to stem cell collection point (I'm a nurse) since transplant in august I've been slowly recovering, we are all very different in our recovery speeds. I think the reason no one talks much about finance on here is that it is such a…[Read more]

Hi Wendy that's also a good quote I was only looking at single trips but I suppose an annual policy might be a good idea, I might want to go elsewhere as well8-) I am told that Revlimid is only a therapy not chemotherapy so there is not supposed to be a problem and there is less risk of DVT with it than thalidomide. Enjoy the skiing, I've never…[Read more]

Helen

I just got an world wide multi trip annual policy (excluding the USA, Caribbean and Canada) with World First for £136 which I thought was pretty good. It includes Myeloma and there is the usual questions about whether and when you had the transplant. At the time I was about 3 mths post transplant. You can apply online too. However I am…[Read more]

Hi Dai
Bit of a blow for you, I'm sorry, I was just reading the bumf about this study on the mmuk site and it sounds very encouraging, I'll keep my fingers crossed for you.
Helen

Oh no David -now I don't know what to do! I did fill in all ailments, I'm happy to say I never had anything wrong at all before mm and husband only mild asthma ( allergic to cats- and we have one:-/ ) so all my quotes included full disclosure and I assume this is taken into consideration hence the great variation in quotes? Or have I got this…[Read more]