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 Ang,

I believe it was at the 4 week stage that I started to feel nauseaus and had 6 days of diarrhea and vomiting. I was also very tired. Things are definately improving, I have a bit more energy and feel able to do a lot more. Climbing stairs tires me out. We are moving house this month and I find if I pace myself, I can still pack boxes,…[Read more]

Hi Frances,

Like others have posted, I also started on my myeloma journey with odd pains in various parts of my body, which accumulated into spasms in my back which I suffered for some weeks even with strong painkillers. During this period, I was being investigated for possible causes of the pain and underwent x rays, ct scans, and ultra sound…[Read more]

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

Well I can only think it must vary around the country.

Never had any problems getting any results bloods or diagnostic test,if fact on the odd occasion like this morning doctors have asked me can they photostat results they have not had!!!!.
I do carry a large red file,up to date and in order,so if Slim has an emergency admission,or like…[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

Carol I award you an “A” also well done you, it’s great news, and as for your consultant be like me Carol if he is happy am happy.

From one onwards and upwards to another have a great week

Love Tom onwards and upwards xxxx

Well done Carol, I have to wait until the 13th for my next blood test, so far results haven’t been as good as the medics would have liked but we have so much to get on with to worry about them. Let’s hope your BMB confirms the good results.

Vicki and Colin.
Have a great time, but take the thermometer. My wife and I are in Hawaii, with thermometer and antibiotics, first big holiday for over two years! I put Vaseline around the inside of my nose before I flew. Not paranoid at all!!!!
Enjoy it……
Regards
Tony F

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]

Hi Andy

38.1 a bit of back pain and they took you in!! Now that is service,not taking any chances with you,!gSF injections as well.all good Andy,then a couple of pints at the local,real ale plenty of iron in it!!!,and to top it up the lovely Dex,all good.
You have now passed muster for the next round!. I call that a good service Andy. No one…[Read more]

Tonight is my Dex night and I’m not going to bite! Wow that’s a first.
I don’t know a lot and I’m not going to go into it here 😉

All the best everyone

Every days a gift
Today is the start of another new cycle

Andy

Hi Chris
I know what you mean about the risks being pretty horrendous. I had kyphoplasty last August and had to sit through all that could go wrong and it was very scary. In the end I decided to go ahead with it.
I had an overnight stay after the operation to ensure my bloods were ok. I was operated on my T11&12 Afterwards recovery of my back…[Read more]

Hi all
Vicki – your right there does seem to be a shortage of light hearted posts of late. We all seem to have dug into our own little MM trenches and battling away the best we can. With little sunshine to talk off.
I blame the drugs for taking the edge off my beer taste and just when I get it back that bloody Revlimid decides it’s done with me…[Read more]

Hi Jeff
I’ve just read through your posts and can understand your concerns. As someone who has been through two and a half years of chemo which is still on going! Maybe I can shed some light on your consultants thinking even if he’s not telling you! Although your PPs are rising they don’t seem to be causing any other major problems. I know your…[Read more]

Hi Frances.
I suffered back muscle spasms early on – I think it was even before I was diagnosed – I was told what is happening is my muscles were protecting me from seriously damaging my spine. So even though it was really painful it was helping me from doing more damage. If that makes sense!
In my case X-rays revealed vertebral wedging all along…[Read more]

Hi Maureen

Thanks for that, yes I am doing pretty good on it the sleep I think has come back to me and near next to normal pattern so that’s good.
Am sure Ian will cope with the Velcade and it’s good to get away before treatment starts pewee went away before I started treatment all booked I a weekend lol.

Good luck to you two and enjoy your…[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]