[jmsmythParticipant]

Hi Ozzy

Yes franks voice was very hoarse when he was on CDT and always worse while on Dex. Hope it eases up soon
Best wishes
Jean x

[jmsmythParticipant]

Hi John

Boy that was great about the SCT and back at work ???? well done you. Frank smouldered for 6 years and then started CDT in June. He doesn't come on the forum and there as his attitude is that his consultant will tell him anything he needs to know. He's not like me I need to know everything that I can about this awful illness. We are off to consultant tomorrow (that's if we can dig the car out of the snow). Frank is not sure about the SCT. had they have done it when he finished the CDT he would have went through it but as the weeks have gone by he's had time to think about it and now he's not sure. He has to make the decision I can't help with that. Take car

Jean

[jmsmythParticipant]

Hi John and welcome to the club that I'm sure you don't want to be in. You are in the right place for advice and support from a great bunch of knowledgeable people. What part of the country are you in? Have you had SCT or waiting? My hubby is waiting for a date for SCT.

Best wishes to you
Love Jean

[jmsmythParticipant]

Dear Jaqui

I am so very sorry to read of Glenn's passing. Nothing that I can say will ease your pain. My deepest sympathy to you and The family. I hope the love and support of family and friends helps you through this terrible time

Love Jean x

[jmsmythParticipant]

Hi David

Sorry that you may be relapsing and I can't give any adviceoin other treatments. Frank is 70 in Aptil and waiting for date for SCT. Consultant told hm that they would not give him another because of his age. The harvested 7,6 million cells.
On news few weeks at Macmillan were confronting the government saying they were denying elderly cancer patients treatment because of their age and that this was illegal as it was discrimination. It should be on their fitness and general health. On the next hospital visit we saw a registrar and Frank relayed this to him and told him that if he relapsed soon after the SCT he would fight them. The registrar said it was his prerogative but he did indicate that he would do the same.

I do hope David that they get a treatment that gives you a long remission

Love and best wishes
Jean xx

[jmsmythParticipant]

Hi Tina

Great to hear about the PPs. It is always encouraging to read positive things. Good luck for the trial everything crossed for a loooooong remission 🙂

Love Jean x

[jmsmythParticipant]

Tom I got from MMUK I think it was Ellen that I emailed. It got very tattered so I got another one. I find it very useful it has 10 different section, some examples are key myeloma terms, appointments, questions to ask your doctor and for me blood tests results. It gives you what the normal readings on and has a section where you record your results. It is excellent as I can see at a glance what way the bloods are going

Ask Ellen if it wasn't her (but I think it was) she will send you one

Best wishes
Jean

[jmsmythParticipant]

Hi Keith

I like everyone else hope that this is a blip and that you get good news from the doctor today. Good luck and keep strong, you have so much support here.

Love Jean x

[jmsmythParticipant]

Hi Lisa

Sorry your hubby is not feeling so good and hope he starts to improve soon. When Frank was on CDT for the whole time he had the most horrendous rash in his groin. They tried everything g to get rid of it. It did not go totally away but eased a bit, and then went away when he finished meds. I know it took him some time for him to feel 'human' again (his words) after stopping. I did (and still do) keep a close eye on him and nag him to take his temperature every day,and even his blood pressure ????

As Tom says keep an eye on him (I'm sure you do) and I always contact our day unit at Belfast city hospital who are brilliant and are always there to offer advice and support. So Lisa use yours

Rake care and best to your husband
Love Jean x

[jmsmythParticipant]

Hi Deborah

Welcome to a place where no one wants to be I remembered a post of yours some months ago you were smouldering? My husband Frank smouldered for 6 years and in June started six months of CDT and few weeks ago had a stem cell harvest. He's just waiting for a bed for the transplant. As Kerry said it is so hard to get your head round this illness but I hope your journey will be made easier with the support, friendship and advice that you will get from the lovely people here I hope your appointment goes well to tomorrow and Deborah try and put it out of your mind for the day of your 50th. I know it will be difficult but I do hope you have a nice birthday. ????
Take care
Love Jean x

[jmsmythParticipant]

Hi Sarah Jane

Have you asked for the MM diary. I think it was Ellen (the MM nurse). I find it very very good. It is divided into sections – questions to ask dr Medical terms and a section where you can record all the bloods like Pp neutrophil, white blood count, haemaglobin, kappa light chains etc. I ifnd it very helpful as I can keep a close eye on all Franks bloods. It also tell you what the normal ranges are If you are Interested, either phone Ellen or email her.

Best wishs
Jean x

[jmsmythParticipant]

Hi Peter
Just dropped in to wish you a smooth hassle free transplant. Look forward to reading your progress. Frank is waiting for the phone call.

All the very best
Love jean x

[jmsmythParticipant]

Hi David hope you had a terrific birthday and have many many more. I'm with Helen I suffer with leg cramps at night and an old Friend (south African) told me to keep a mirror under my bed and when I got the cramp put my for on the cold mirror. It worked for me and although have not had cramp for some time the mirror is still,under the bed >:-)

Hope you get it sorted soon

Live Jean x

[jmsmythParticipant]

Hi Peggy

Just wondering how you are getting on with SCT. hope all is going well

Love Jean x

[jmsmythParticipant]

Dear Sue

My heart goes out to you. My love and thoughts and hugs are with you both

Love Jean x

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