[wendyduffieldParticipant]

Hi Ozzy, hope you feel better soon, you are obviously having a bad reaction to the velcade, have they given you anti sickness medication and stuff for constipation, you have to take it every day regardless.

Wendy

[PatGParticipant]

Hi Ozzy,
Sorry to hear about your reaction to Velcade. Although I have Amyloidosis the Velcade treatment (VCD) is very similar. I started off on 4 treatments over two weeks and then one week off and also ended up in hospital. The reduced frequency to one every week over 4 weeks has proved to be managable, but you should have some medication for the sickness. I still get a sicky feeling occasionally but no actual vomiting and the tablets are always on stand-by just in case. I also get constipated but find Fibogel manages that OK. Hope this helps – have a word with your consultant. I am sure he/she will be able to help.
Keep well and fighting
Pat
xx

[BADGERParticipant]

Hi Ozzie
I too am on Velcade had no real side effects but have been having it once a week for four weeks with a week off this regime might suit you better have had two weeks off because of chest infection temp of 39 two day in hospital but been good other wise perhaps your consultant will change you to once a week
Good Luck
Jo

[eveParticipant]

Hi Wendy

How are things going,glad to see India is still on the cards,but I would recommend you go Vedge for your stay,they have some lovely dishes,if you Like vedge they have some lovely food.

Have you started Velcade yet,hard to keep in touch now as I try only to look in these days,looked in today and saw lots of blank spaces,wrong that stupid people who abuse the net stop people posting.

Love to you Wendy.Eve

[wendyduffieldParticipant]

Hi Eve

I have just got back from Tromso in Norway so didn't see your post till now. I had a great time and saw the northern lights and went dog sledding. My light chains stayed more or less than same on my last light test so no need to start treatment yet, the consultant said I can go to India if they don't go over 600 so as they were only 69 on 25 January I have quite a lot of leeway before 1st March. And yes I will eat mostly veggie food when I'm there which is what I did last time I was there and I had no stomach upsets at all!

Hope you and Slim are keeping well

Wendy x

[HelenParticipant]

Dear Wendy
I'm following you now! as of today my lambda light chains have jumped to 58, a gradual climb over several months to 26, then doubled!
No treatment changes so far, watch and wait – but it's still so disappointing. I'm off to Barcelona on Friday. Good luck for the 15th
Love Helen

[tomParticipant]

Hi Helen

Well I hope the "No treatment Change" last for a bit, Have a good trip To Barcalona.

Love tom Onwards and Upwards xxx

[wendyduffieldParticipant]

Hi Helen
oh I wish you wouldn't copy me! It really is disappointing to find out that remission is coming to an end after what seems to be such a short time for both of us. It is not a good place to be in this watching and waiting period but it is still better than being on treatment so lets hope we both have a long period of time before we need treatment and that we feel well. Have a great time in Barcelona.

Love Wendy

[HelenParticipant]

Thanks Tom and Wendy
I will do my best visiting all the high spots – tops of towers etc! Never been before, he did say it could be some months before I might need more treatment. Ironically the cough seems to finally be going.
Love Helen

[AliParticipant]

Oh no you two:-(

I sincerely hope this watching and waiting lasts for a very long time.

Hope you have a lovely time in Barcelona Helen and good riddance to the cough:-)

Love Ali xx

[tomParticipant]

your welcome Helen and am pleased your Cough has gone, mine well if mine left my Young Bride wont be able to find me Ha ha.

Tom Onwards and upwards xx

[VickiParticipant]

Helen,

When I read your post I could've screamed, bugger! You can't be…..could it be a blip! Damn this mm, but you can put it back into its box. It's a blow but you can do it. Enjoy your Barcelona trip, relax and one positive……no cough! 🙂

Vicki and Colin x

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