Dear Eve,Dai and Sue
What a valuable source of sense and strength you all are. It helps to maintain optimism. I look forward to forgetting about myeloma even if only for a few hours:-/ And I too will raise a glass, water of course as wine still tastes terrible, to long journeys, made easier by good companions.:-)
Helen

Dear Eve
It is also 1 year since I began my journey, rejected by blood bank because I was too anaemic to give blood and sent to my GP for tests -these came back in the second week of October and I was sent to haematology, no diagnosis just the start of a very anxious time. I still find it hard to believe that I am in this position! I look in the…[Read more]

Hi Debs
Yes I'm getting hot flushes, before diagnosis they were just at night and I thought it was menopause, so did my GP. Now I get them all the time and the haematologist thinks that as my blood has returned to normal I'm resuming the menopause again. I've been experiencing them for the last 5 years and never thought of hrt as there was such a…[Read more]

Bridget I feel I get the same sort of response where I am and am fully consulted too, but I can also see where there are holes in the system, as you say Eve the places are so busy with far too many patients and nurses very pushed for time, as for pharmacy….. I sat in the very crowded waiting room after my sct thinking I was more likely to pick…[Read more]

hi sandy
Hope your stay in frh was ok, I was there a few weeks ahead of you, I'm still steering clear of crowds and people with overt illness but have been to town and done the shopping regularly since week 5. Went to a few restaurants and pubs when i went away this last weekend. I asked at the hosp last week they said my bloods were all ok now…[Read more]

Hi Shirley

Am so glad you are doing well post allo transplant and are in complete remission. What sort of graft v host problems are you having? Did you have the full allo ie high dose chemo and then the transplant of cells from your sister? What did your consultant say about the risks and possible remission period?

Take care

Wendy

Hi all

Thanks for all your replies and suggestions. I think I will ask for a second opinion, Debs can you suggest anyone in particular at the Royal Marsden? You may not have been offered it because you are still on the Myeloma X1 trial and I came off it due to being intolerant to Thalidomide although my consultant said she would have taken me…[Read more]

Hi David
There is some evidence to suggest that Zometa has an anti cancer effect ( recent oncology weekly) and all myeloma patients should go on it, the jury is still out as to how long you should be on it.
There is also a question as to should you be on it if you are in remission, as technically if you are in remission there should be no…[Read more]

Dai, Just what you needed to hear, here's to long remissions
Helen

Hi Etta
Welcome
I react to the zometa with lethargy, tiredness and muscle ache, I try to remember to take paracetamol an hour before the injection and then regularly for a day or 2 afterwards. I have been on it since feb 2011 and when have forgotten to take it it has been worse. If you can't take paracetamol maybe the team at the hosp can…[Read more]

Hi Wendy
No idea either but how are you feeling now? hope you are less tired and down.
I had the ' you are in complete remission' blood tests back this week so, despite still feeling pretty sick it was a big boost.
Helen

Hi Dai
Yes I agree with you but have never really thought through the whole process until now, when i have reached the goal of sct and now enter the watch and wait section.
When you first get the diagnosis, the shock and the treatment options are presented to you in such a hurry and you have no real idea how to make choices, we are as you say…[Read more]

Hi Bridget
Have sent you email with address for hat
Love Helen

The site won't let me finish my previous post?
So I will continue here.
Is the disease still as much of a mystery to medics as it appears in the literature?
I do hope you get some answers at the conference Dai and I look forward to hearing how you get on with it.
Helen

Hi Dai
I hadn't read this before I answered Nadines post but you raise a point that I too deliberated on for a very long time before the sct. I was fitter the day before my sct than I have been for about 5 years, I was able to do a 5 mile walk without pain or tiredness.
I have searched the literature too and read report after report on the…[Read more]

Hi Nadine
I had my sct nearly 6 weeks ago, it was horrid but I'm getting better every day. It is as Debs describes, like childbirth and you begin to forget about it as you improve. I'm doing the shopping and cooking now and watching the dust doesn't get too deep!
About you, I have 21 and 25 year old children(!) and I don't want them to be part…[Read more]

Hi Paul
Ah the missing soap.. There you go it's the little things that get you! I worked at jimmy's back in the 80's I have fond memories of the place, I live close to the Newcastle centre so was only going to be in hosp for a few days and come and go as a day case how ever became very ill at day 6 and was admitted for the next 10 days then been…[Read more]

Hi Paul
Belated welcome, I've been a bit out of commission lately.
I was diagnosed with IgA lambda light chain myeloma in feb, was on RCD arm of myeloma xi trial and just had sct 5 weeks ago, doing ok now.
My light chains dropped from 800 to 11 (normal) in the 4 cycles I had. So -good response and on to sct.
One thing I'd warn about and that…[Read more]

Hi Dai
I asked about central lines early on, (you are going to think I'm a vacuous vain creature who ought to know better from all my posts about appearance and hair etc, but I was concerned about the position of these lines and neckline scarring afterwards, I want to return to as normal a life as possible and look as though nothing is wrong with…[Read more]