Hi Ann

I hope your appointment with your consultant goes well this week and you learn the results of your MRI as well as asking the many questions which no doubt you have thought about since your last visit. As regards planning lots of family events this year, before you actually book anything in advance, I would see whether you possibly…[Read more]

Dear David and Jo and Tom
Am now watching your Velcade journeys with more than just passing interest! It's marvellous how soon one manages to readjust to changing circumstances with this disease. I'm hoping you all do very well on it. Note to self ' don't rub eyes''
Still watching from the sidelines Helen

Dear Emma, thank you, I hoping the same, you just get your optimism back and you get smacked down again. I hope your mum is continuing to improve, is she out of hospital yet?
And Ali Jean and Vikki I don't know why they decided to treat straight away, it seems to have been a group decision, weird non typical cells + myeloma cells and no pp and…[Read more]

Hi Helen

So sorry that it is a relapse and not a blip. Weird thata you feel so good. Maybe that's an omen that you will,have lots of energy for the next round 😛 you have such a positive attitude, I have everything crossed for you

Love Jean x

Hi Mandy

Welcome,,everyone on here will tell yo the Myelma journey is like a rollecoaster ride,mentally and physically ,everyone is different,plus add the equation of carers ,you get a real mixed bag!!!!,so every thing yu are feeling is normal.

It sounds if you are doing well,had a few blips,but on track,to help your back!!! Plus SCT,it…[Read more]

Thanks Ellen for passing on Sues message. My thoughts are with Keith and Sue I too remember Keith's postings from the old site. He was a great support to many. My love and prayers are with them both

Love Jean

Clinic today, relapse is definite, off Myeloma xi trial and start VCD on 20th May. Don't know how I feel now, physically well, mentally all over the place
Helen

Well am laughing soooooo much ,… 🙂 🙂 😀 🙂 have nearly dropped iPad in bath and husband has run upstairs to see what is the matter!!! I love it! Not sure I want one unless its in pink, but yes, cute is good. Tom you do make me laugh.
Much love and thanks and when you read my other post you'll see why. Helen

Hi Ellen
I do hope you can convey our heartfelt wishes to Keith and his wife, let them know how we are thinking about him and wishing him well.
Love Helen

Dear Tony
How encouraging a post, delighted to hear from you, and yes the number worry is awful. But you give me great hope.
Love Helen

Hi Tom
Am not on face book! Put onesie pic on here?:-) pretty please! Are you better now?

And Ali
It's back to the ' feel a bit ill? Take temp….. If stays above 37.5 for 6 hours or hits 38 once phone hosp…. She is on the trial… That's what they have to report so she needs to go in to see them. And I can understand holiday fears. My…[Read more]

Hi Nikki

Frank was in the same boat. All his bloods were dood except for potassium. The kept him in an extra 3 days on a drip.potassium started to rise and they said he could go home. Frank asked was it his own body or the potassium drip that was responsible for the increase. They said it was a good point and kept him in another day. They gave…[Read more]

Dear Maureen
Two sorts of free light chains – ask for both results, as a rough rule the lambda is about twice the kappa but there is a range.

Normal kappa is 3.3-19.4, lambda 5.7-26.3 (gms p Dl)

I'm no mathematician but I think the following is correct, no doubt someone else could make it easier to work out!

If you divide the kappa by…[Read more]

Dear Eve
I know you aren't rambling and yes I never suspected myeloma seriously, it crossed my mind only but it is rare and I'm the wrong profile. I'm still surprised to find myself a patient! Even with hindsight I'm glad I didn't know sooner though .. I did a lot in those last 2 years which I would never be able to do now. And I didn't have that…[Read more]

Hi Maureen

I'm not sure what normal levels of Kappa/Lambda light chains should be for myeloma patients. All I know is that the cancer treatment aims to reduce the light chains to as low as possible. Mine were reduced from 2,200 to 45 after treatment which were considered to be good, so Ian's results at 52 also look good. What were they before…[Read more]

Hi Ann

Yes, my vertebrae collapsed whilst I was asleep but I didn't feel a thing until I woke up. I lost 3" in height and as a result have a hump in the top of my back. It took me ages to get used of my reduced height. I've shrunk to 5'1" and my one son is 6'2" – he now looks so tall next to me. Like you, I went to A&E the week prior to my…[Read more]

Hi Nikki

I was unable to eat anything and drink very little following my SCT for a good ten days due to constant feeling of nausea, actual sickness, sore/dry mouth which all combined together causing a complete loss of appetite. Even with three different types of anti sickness drugs the nausea wouldn't subside and food/water wouldn't stay…[Read more]

Hi Helen

I just remember when you were diagnosed,with a simple blood test,as a nurse you never saw it coming,you questioned yourself ,no matter who you are aches and pains are a part of life,it is looking back and thinking as a nurse,I should have seen that coming,or as Sue says hindsight .

I do think sometimes the patient can be to close ,I…[Read more]

Hi Maureen

I'm so pleased to read your husband's light chains have reduced to a low level. My CDT and SCT were covered with my husband's private medical insurance provided via his long term employer. The actual insurance cover was with Aviva. They were very good at covering all of the bills for my initial treatment.

However, when I had…[Read more]

Hi Nikki
Very common to have all sorts of electrolyte disturbance, if not having normal diet and fluids its easy for them to get too low and need topping up by drip.
Love Helen