[LyndaParticipant]

Hello Eve and Slim,
Only just caught up with postings and was so sorry to hear your sad news.
You and your family are in our thoughts and Pete and I send you our love.x
Lynda and Pete xx

[LyndaParticipant]

Hi Andy
Just caught up with this post after replying to your post on "general".
I am so sorry your results from you Rev/Dex havent been so good. I really do hope as its only after your first cycle that its just a temporary blip and further cycles will be successful. I will keep fingers and toes crossed for your meeting with the consultant on Friday. Please keep us posted.
Love Lyndax

[LyndaParticipant]

Hi Andy
So good to have you back. Sorry you had to pay an unscheduled stay to the hospital but glad you are now feeling much better.
Good luck with the Rev/Dex. Lets hope it stops those little sods in their tracks!!!!
Love Lyndax

[LyndaParticipant]

Hi Ann
A very warm late welcome to you and to Pete.It must have been quite a shock to you both and you probably feel like the rug has been pulled out from under your feet.There is an awful lot to take in but take each day at a time. As others say this is the best site to go on with so much support. You will have lots of new things to take in but you do gradually get into a routine with the medications and appointments.
My hubbie (also called Pete) was diagnosed November 2011 after suffering with lower back pain and also pain just under ribs.Has been on CTD for a few months but now on Velcade with the hope of SCT in a couple of months.
Good luck with the x-rays and appointments. Both of you keep your chins up.
At least you guys now know you are not on your own with this and the people on this site are brilliant and supportive.
Love Lyndax

[LyndaParticipant]

Hi Sarah
I was so sorry to hear that you had meltdown at the Doctors and hope you feel better today. Eight months is a long time on this rollercoaster of MM and you probably feel physically and emotionally drained.
I too am carer to my husband Pete who was diagnosed with MM a month after Henrys diagnosis.I was told that my GP could refer me onto someone or I could ask Petes Oncology Nurse and she could refer me to a Macmillan Counseller. Please do seek help and be kind to yourself. Dont forget its not just been Henrys battle but yours too.
I am so glad Henry is doing so well and I hope he has a really long remission after his SCT.
Keep us posted on how you both are doing
Love Lyndax

[LyndaParticipant]

Hi Tina
Please keep that chin up. I know sometimes you just want to get on with things with a view to feeeling better and when things dont appear to move fast enough it does feel frustrating.
Good luck for Wednesday and I hope that the chemo will work well and give you the best results towards having SCT.
Love Lyndax

[LyndaParticipant]

Hi Tom
I might have missed the boat but I would be so grateful if you could also pass on my love and good wishes to Bridget when you next go on Facebook.
I am not very good on the computer at the best of times and Facebook is altogether another ball game to me!!!!
Thank you so much
Love Lyndaxxxxxx

[LyndaParticipant]

Hi Paul
Thank you so much for your reply. It certainly has given us some encouragement that the Velcade will work. I will keep you posted.
Am really pleased for you that things are moving well towards Stem cell in June. Hopefully we wont be far behind you!!!
Take care. Love Lyndax

[LyndaParticipant]

Hi Tom,Eve and Dai
Thank you all so much for your replies.It was nice to have such support and to know that Velcade has done the job with Slim and Dai.I feel more optimistic that it will work for Pete now.
Eve- Pete too has his in infusion weekly. I can understand Slims's frustration!!!!. We will be thinking of you both next Monday. Please keep us posted when you can.
Kind regards to all
Lyndaxxxx

[LyndaParticipant]

Hi Sarah
What great news about Henry. So pleased he is home. 4 weeks is a long time away from home even if you see each other every day. Hope he will continue to improve and remission will be really, really long………….
Please keep us posted on how he is doing. Pete my husband is due for SCT in next few months if his paraproteins come down enough.(Was on CDT but levels have stuck for last couple of months) so going on Velcade next week which will hopefully do the trick.
Look after yourself too.
Lyn xxxx

[LyndaParticipant]

Hi Dai

Hubbie Pete has the tingling around mouth and lips since he started the Dex. No problems with passing water but does have hiccups most Tuesdays which lasted several hours. As you can imagine that was very tiring but he has found a great exercise which seems to now stop them. If needed I will gladly pass on to you. Also on Dex Day his nose suddenly starts running as if he has a cold. This carries on for a couple of hours and then as suddenly stops. Dex certainly seems to have some strange side effects!!!
Even stranger Pete had been on 20mgs once every Tuesday but it was then increased to 40mg weekly. We expected for the more familiar symptoms to be far worse like the lack of sleep,and the high when I pull him down from the ceiling but in fact he has been better on the higher dose. I am certainly not complaining but this drug has a mind of its own!!
I do hope you manage to get these symptoms sorted Dai and that things will settle down. Good luck with the treatment.
Kind regards
Lyn

[LyndaParticipant]

Hi there Mavis,
Sorry to hear you are having to join the CDT gang!

Hubby Pete was diagnosed with MM November 2011 and was started on CDT straight away and is now just finishing his 4th month. He has Cyclophosphomide 500 mg and Dexamethasone 20mg once weekly on Tuesday, and Thalidomide (originally 50mg) but upped to 100mg on third month every evening. He has been having monthly cycles and has been doing really well with very few side effects. Being honest the only bugbear has been the Dexamethasone which leaves him with the high for a couple of days and then the downer on Fridays. He is also eating me out of house and home!!!
He also injects every morning with Clexane which he was shown how to do.
Hope this helps you Mavis and I wish you the best of luck.
Lynxx

[LyndaParticipant]

Hi Dai,
Lovely song. Have printed it off computer and read it whenever I need a pick me up and it makes me smile and fills me with hope.
Love LynXXX

[LyndaParticipant]

Hi Mavis
Good photo with a nice smile. Havent worked out how to do that yet. Maybe thats a good thing as I could put quite a few people off. Ha Ha!!!!!
Love Lynxxx

[LyndaParticipant]

Dear Bridget
Just saw your last posting and am really sorry you had such tough news.You have always been a tower of strength to everybody on this forum including me. You have to apply this strenghth to you now and I am sure that with all the love from your family and friends you will get through this as you are made of strong stuff you know!!!
Just think of that lovely shiny laptop you will receive tomorrow. I also think that £100 quid you saved should go on another treat!!!
Keep smiling and keep that chin up.
Love Lynxxxx

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