Hi Tom and Jane

Thanks I talked Frank into taking another one today he was reluctant but it’s great what a bit of nagging can do. He took it this morning and he’s has been as high as a kite. I asked him if it eased the pain and he said no but he couldn’t give a ****. Should be fun when we go on to 2 a day. But he’s been good this afternoon and…[Read more]

Hi Carol

Frank had SCT March 2013. After 100 days all was good and they started him on Zometa. Had it for a couple of months and then his phosphate level dropped and Zommeta was stopped. Have him on meds to improve phosphates but they are not working yet so they are still with holding the Zometa till they start to rise

Hope all goes well for you
Jean

Hi Jeff

Myeloma UK supply a diary (free) which gives lots of segments. Eg blood results. Theses are pre printed for you to fill in and at start of section gives you the normal range. You can see at a glance what the bloods are doing. There are different sections – questions to asker, appointment etc. I have been using these diaries for nearly 8…[Read more]

Hi all
Andy sorry to hear that you had another stay in Hotel NHS but just look and how they looked after you. Don’t worry about the brewers, Frank will keep your end up. Enjoy Greece. Great to get away

Maureen I too thought I was seeing things on your post but it gave me a laugh. Hope you have a fantastic time.

This is the third time I’ve tried…[Read more]

Great news Carol. Franks new cells where 1 year old yesterday. He’s also,in remission. Thank God. Just loved your photo

Hope it’s loooooooooong

Love Jean

Hi Vicki and Colin

Bloods where good except for phosphates and vitamin D. Said shingles were drying up nicely and that he was lucky. Said he needed natural vitamin D so we left hospital and booked 11 days in Lanzorato. Never been so looking forward to it. Going 16 March. Mauritius how fantastic. We lived in South Africa for 10 years (much younger…[Read more]

June it must have been terrible to get a late diagnoses. When the rash appeared Frank phoned our hospital day unit and described the symptoms. Registrar rang him back and said it sounded like shingles but to see his dr who said right away that it was shingles. He has been lucky in a way as the spots have all scabbed over. He has awful back pain…[Read more]

Hi Vikki

Great to hear from you hope all is well with Colin. I read Ali’s post that you have booked a holiday. When and where? You might have mentioned it before but I have a head like a sieve. Wherever it is I hope you have a great time

Shingles have been awful but today’s he’s been on good form. He took a shower and it didn’t hurt and he says…[Read more]

Hi Eve how long since you have seen the family. I’m sure You are both excited. Shingles are awful. He says the pain from the spots has eased a bit but back pain is terrible. (He had been free of it form months)

We have a cruise booked for 8 May. Don’t like booking that far ahead but it gives Frank something to look forward to.

Long May Slims…[Read more]

Hi Eve

So glad to read of your news. I hope it goes on for a long time. When does your daughter arrive. Something to look forward to

Best wishes to you both
Love Jean x

Hi Jan

Thanks for getting back. Frank has been lucky as far as infections go. He’s had the odd cole, which like you takes him about 6 weeks to get over. But no infections, thank God. Shingles has been the worse. I record his bloods in the Myeloma diary and they are all within range. He I’d have low potassium and phosphates but they are now…[Read more]

Hi San thanks these shingles certainly get around. Frank has had the rib pain for some months. Long before shingles. I asked our doctor if consultant had ordered MRI scan as she said she would but she hasn’t. Seeing her Wednesday so will investigate.

Jan do light chains alway increase with an attack of shingles? Franks consultant does not like…[Read more]

Hi Helen

Glad you are eventually getting over the pain. I asked our doctor and he said the pain can last months. Frank has just got up and he said he “thinks” the pain is a bit easier. He says he is now suffering from “sleepy sickness”. He’s gone from 5 hours sleep a night (always been his sleep pattern) to nodding off a at the drop of a hat

Any…[Read more]

Hi all

I contacted doctors and he checked for me re SCT and thyroid doctor app. The appointment for thyroid doctor was requested on 9 January. Doctor did tell me that doctor concerned had a long waiting list. I asked him to check the MRI request and was told there wasn’t one. He said he would phone hospital and find out

Thanks all
Jean x

Hi Pete

Yep! He has it there as well. How long does it last. Doctor told him that once the bolsters break he will no longer be contagious. He seems a little brighter today. The ibrofrem seems to help him. The pharmacist today told him not to put any cream or lotion on as the applying of it could aggrivate the rash. I do feel helpless as there is…[Read more]

Hi Maureen

Last time we were at consultants she got an X-ray of his chest. No,point in going to our doctor he is dead slow and stop. We are seeing consultant today week so hope to get everything sorted. Thanks for your reply

Hope Ian is doing well

Jean x

Hi JoJo and Jane

Thanks for your replys. Frank was given acoclovir. The pain relief he was prescribed was not helping him. Our pharmacist advised him the take ibrofrem our son brought it to him tonight and it’s the first time he’s had some relief. Hr told me that this morning the pain was horrendous he thought his body was on fire. He seems to be…[Read more]

Hi sorry to hear that your husband has MM. My husband was diagnosed in 2006 with smouldering MM. He had SCT In March last year. In the 8 years that he’s smouldered he’s had Zometa on and off. He started it again after SCT but had to stop,as his potassium was low. He has never had a any side affects ( potassium low because of SCT). He has sailed…[Read more]