[wendyduffieldParticipant]

Hi Helen

I am thinking Burma or Cambodia but am slightly cautious because of high number of diseases that are out there to catch so may end up being latin america instead. The doc said I could have a light chain test now I had it on Thursday, should find out the result next Thursday so fingers crossed.

Venice sounds nice, take plenty of euros!

Wendy x

[wendyduffieldParticipant]

Hi Paul

bet you are glad to be home but it will feel strange the next few weeks as you start the slow process of recovering. Seems like you had a relatively easy time of it like me, just a bit of sickness and a sore mouth. Take it easy and enjoy being free as I see what lies ahead is a mini allo, good that a donor has been lined up

Wendy

[wendyduffieldParticipant]

Hi Helen, pleased to say my kidney function and blood count were all absolutely normal however I couldnt cope with the ostrich approach any longer and today asked my haematology support nurse how much a light chain test would cost as I was planning a trip to Asia in November but did not want to go or book anything if it looked as if I was relapsing and that I needed to start booking flights before my next clinic appointment at the beginning of October. In that case she said she would speak to my doctor about having an earlier test and that it wasnt a matter of me paying for it so I will find out later this week what the doctor says. Will keep you posted.

Wendy X

[wendyduffieldParticipant]

thanks for all your replies, Eva, I have asked for a full blood count when I have Zometa on Monday, I think that is a good idea. Dai, I feel like a novice to this game when you mention your light chains. In the scheme of things I am going to try not to fret, it is only slightly outside normal range and it could be because I had an infection when they were last taken.

I could demand another light chain test but if they were further up then it wouldnt necessarily mean I would start treatment and would just cause me more anxiety. So Helen I think I will take the Ostrich approach unless my full blood count shows up some abnormalities.

Right now Eva running the 10k seems like a distant reality as beset by further viral infections since then but at least I was able to do it at the time.

Wendy

[wendyduffieldParticipant]

I am so sorry to hear about Peter, I cant imagine how you are coping but at least he is no longer suffering and was at home surrounded by his loved ones.
Love Wendy

[wendyduffieldParticipant]

Hi Eve
so pleased that Slim is picking up and getting better from his SCT. I started to feel alot better around the two months mark and apart from lots of colds and coughs feel back to normal (whatever that is) now (11 mths post transplant)

Wendy

[wendyduffieldParticipant]

Hi Andy
Its good that you are getting referred to the top man. My understanding is that the bone marrow biopsy is the determining factor in relation to myeloma. Unbeknown to me until quite recently I was genetically tested (I dont know when) and found to have two chromosomal abnormalities which affect my prognosis, monosomy 13 which is considered to be a poor prognostic marker and translocation 11/14 which is considered to be a good one (however the bad outweighs the good). My consultant says that my treatment would have been the same regardless and that they dont know enough about what these abnormalities mean which is why they dont routinely tell patients. So I guess I am saying that the genetic side is still quite a new area in Myeloma. When I proved to be allergic to Thalidomide they put me on PAD (Velcade, Doxurubicin and Dex) which is considered to be quite an aggressive treatment, you could ask the prof about that.

Good luck with the meeting

Wendy

[wendyduffieldParticipant]

Hi Helen

I am loving my new hair, had it cut and shaped a bit but still got the curls on top. Not dissimilar to yours actually. I went back to work about two months after my transplant, initially able to work from home, then going into the office and increasing my hours although I have decided to keep to reduced hours to achieve a better work/life balance. Sometimes I think I'd rather not work at all and just enjoy my remission whilst it lasts but at only 51 I may have a long road ahead before getting any sort of pension! What about you?

Wendy x

ps I do a blog which charts my emotional and physical journey with myeloma which you may be interested to follow at wendyduffield.wordpress.com

I also promised a photo of me doing the Manchester 10k run so here it is hopefully. It made the fundraising news on the Myeloma UK website, fame at last!

[wendyduffieldParticipant]

thanks Jean, didnt know you were on facebook

[wendyduffieldParticipant]

Some more good news!!

Great news Mavis and Eliz.

I was told by my consultant that my light chains were better than his ie within normal range, so thats another 3 months all clear for me too!

[wendyduffieldParticipant]

Hi Alethea

sorry to hear what you have been through over the last 6 months, it sounds tough especially wih your Mum being ill as well. I found the physical limitations due to the treatment really hard to deal with but hopefully these will pass as the treatment wears off and after the transplant. I am now in remission 10 mths post transplant doing well and pain free so would say hang on in there. I also got very depressed and anxious and was able to have some counselling at a local cancer support centre and I dont mind admitting it, took the happy pills as well which definitely made a difference to my ability to cope with what was going on. Make sure you get the support you need and dont be afraid to ask for help.

Wendy

[wendyduffieldParticipant]

I think it is a good idea and used to keep a daily diary of how I felt on treatment and what day of the cycle it was. I think my consultant used to dread me getting my notebook out but I didnt care!

[wendyduffieldParticipant]

Hi Tom
great news it is for you both, long may it continue

Wendy

[wendyduffieldParticipant]

Hi David
thats great news, another big sigh of relief, interesting about the water.
My 3 mth check up next Friday, so starting to stress now!
Wendy

[wendyduffieldParticipant]

thanks Eva for your reply, hope your very late dinner was good! I am not really a band or clip kind of girl so today I had just had enough and arranged to get my hair cut, accepted that the curls would go along with the ruffles and I definitely think it looks better and I feel better so thats the main thing! Still a few curls left on top too:-)

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