[jmsmythParticipant]

Hi Helen
It's the dam Dex that is causing the most problems. He is ok when he takes it but when he stops he's not on the same planet as the rest of us. His Protein is still at 2 and this is supposed to be the last cycle. He said if its necessary he will continue with it. That really surprised me. Am phoning the myeloma nurse on Wednesday. She is about the only one I can get sense out of and talks in a language that I can understand.

I showed Frank the photos of you and Tim in Venice and he now says that if his treatment is finished he is going on a cruise while he waits for the SCT. Not sure if that will happen

Helen hope that dam cough takes a running jump!!
Keep well
Love Jean x

[jmsmythParticipant]

Hi Vikki

Have you got a new date for the SCT. hope you are both bearing up. Love the photo

Helen glad to hear the whooping cough is getting quieter. I remember one of my boys had it and it was frightening listening to it. Keep getting better
Love Jean xx

[jmsmythParticipant]

Hi Vicki

Every month I get Franks readings and try to make snse of them. Last month PP wa 2, Kappa light chain 10.1, lambada light chain 7.6 an ratio1 .33 this month readings were respectively PP2, KLC 8.3 LLC 7.5 ratio 1.11. So I am assuming that as consultant doesn't seem worried that this is fine. In 6 years Frank has only had 1 bone marrow biopsy and that was when he was first diagnosed. Will have to wait till Wednesday to talk to Jackie the Myeloma nurse

Thanks for the information and I hope Colin is well

Love and best wishes to you both
Jeanx

[jmsmythParticipant]

Hi Vicky
Min is involved in widows groups. If you do a search on the site for her posts or even send her a private message. Full name is Min Cato and she is very helpful

Love Jean x

[jmsmythParticipant]

Hi all
Just putting my penny worth in. Years ago I was told about what was in public pools (maybe I'm paranoid) but I will not go into a public pool or jacuzzi. Now in saying that my sons do tell me "get a grip mum'. But that's me

Love Jea x

[jmsmythParticipant]

Dai and Janet I hope you have a fantastic day tomorrow and my love to the happy couple – Becky and Liz cheers!! Enjoy and have a ball and make fantastic memories.
Love Jean x

[jmsmythParticipant]

Dear Vicky
Sorry you dear dad lost his battle with this horrible disease. My deepest sympathy you, your mum and all your family. Take care of yourself and especially your mum as she has lost her life partner and will need all your love and support. Take strength from each other

Love Jean xxx

[jmsmythParticipant]

Kerry happy birthday for tomorrow. I know it will be difficult but try and have a good day.
Take care
Love Jean x

[jmsmythParticipant]

Thanks for that Megan. The more info I can get the better so I can have questions for the nurse on Wednesday. Hope Phil's side effects disappear. Frank is having ad side effects and withdrawal from the Dex. I think the thought of aving to continue CDT is really upsetting him.

Thanks again
Regards Jean

[jmsmythParticipant]

Thanks for that Lorna. It's a relief to know that they might still do it and I'm glad that Mike is still doing well and long may it continue.

Kevin they said light chains and everything else was good. I did ask the question but it was yet another registrar. I'm thinking of getting a tape and recording answers to all the same questions that each different one we see asks. When I asked she said that we would have to see consultant next month. My nerves will be wrecked by then. Our myeloma nurse was in with us and she saidvif I was concerned I could ring her on Wednesday to find out what the protein level is this month. Have you a date for SCT?

Best wishes to you both
Love Jean

[jmsmythParticipant]

Hi Kevin

Glad to hear your good news and wish you all the best for SCT. We have just coming back from consultant. Frank just finished his 5 th cycle of CDT. For the past two months his protein has been stuck at 2. Did your protein drop to 0. I'm worried that as its not 0 they won't do SCT. sometime trying to get info from professionals is like getting blood out of a stone.

Kind regards
Jean

[jmsmythParticipant]

Hi Kerry

Poor Melvin what a terrible experience he is going through (and you too). I cannot offer any advice as I have had no experience of anything like this. Kerry please come on and rant as much as you like. I'm sure there will be someone on the forum who can relate to what you are both going throug and be able to give you advice, support and encouragement.

My best wishe to you both
Love Jean x

[jmsmythParticipant]

Dear Emma

So sorry that you have had to join us but you are very welcome. My hubby has Mm and is just starting his 6 th cycle of CDT with the hope of going for a stem cell transplant. Emma it will take you some time to get your head around it but you are in the right place. This forum and the Myeloma Beacon (USA) are great sites for information. You "know" Tom already!!! He is great for advice and has a great sense of humour. You will make lots of cyber friends and don't apologise for 'going on', that's what the forum is for, you can rant, rave and ask for advice and information. They are a great bunch of people. Also Emma don't forget Ellen and Maggie the myeloma nurses on the forum, they are really great. Email them if you need need any medical questions answered or any of your worries.

Don't know where you are but if you get a chance to go to a Myeloma Infomation day, take the opportunity. It is worthwhile

My best wishes to you and your mum
Love Jean

[jmsmythParticipant]

Hi Dai

Oh boy you have really been through the mill!! But I'm so glad to hear that you are on the mend. We all missed you here. Dai I think it might be my fault about Janet being in contact. Tom had told me what had happened to you and I made the assumption that he had been 'talking' to Janet. Sorry for any confusion.

It's really great to have you back and hope you Beky and all the family have a brilliant day next week. Looking forward to seeing photos.

Take care and welcome back
Love Jean x

[jmsmythParticipant]

Rachael I am so sorry to hear of the sad news of the sudden passing of Paul. My deepest sympathy to you and your family. God bless
Jean x

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