What’s your Lucozide count like? It might be because the chemo has affected your white blood cell count and so you are more perceptible to coughs and colds and less able to fight them.

Hi Maureen
Steph and I are going to the Newcastle, it’s in Gateshead really, info day on June 7th. It our second time and we found the first very informative.

Every days a gift.

Andy xx

Hi,

Like others, I remember it well losing my taste during CDT and it took about three months after chemotherapy before my taste buds eventually returned to their usual levels.

My mother suffered from permanent loss of sense of smell and taste after a severe cold for over twenty years! She tried various remedies, joined discussion forums and…[Read more]

Dear Mike, thank you for the helpful posts, I have really appreciated the information and feel much more prepared for my next appointment with the Haematology Consultant.

Kind regards

Karen

Hi Jill, I did a literature search online and found a few papers relating to the use of bisphosphonates in active myeloma but nothing relating to use in relation to delaying onset if prescribed when a person is asymptomatic. It is on my list of questions for the Heamatology Consultant. Thanks for the information.

Like Susie I dread the thought of…[Read more]

Hi there, if you at the thread Buddy’s wanted – Stem cell harvest – Dec 2013 – in Treatment, there is a lot of info from three of us that went through it at the start of the year. It’s like a diary so should give you some usefull insights on what to expect.

Hi Angela. Good news about Graham. I’m not too bothered just yet about the IgG level. The leader of the local self help group has had a IgG level of between 26 and 28 for the last 10 years and is managing OK. I haven’t got Kidney damage and my Calcium levels in the blood are normal. The last 3 blood blood test show no change in IgG also so it is a…[Read more]

Hi Keith

Well done you 🙂 and you can be forgiven about memory loss after what you have gone through

Stay well my fiend its all Onwards and Upwards now

Tom Onwards and Upwards x

Hi Clover

well I think its all ben covered by the great posts above.

Its a roller coaster of a ride for your Dad am sorry to say but he will get through it, you all will, you dont say how old your Dad is ? nor how old you are ?

Good Luck to your Dad on his road to remission.

Tom Onwards and Upwards xx

Congratulations to you Both am well chuffed for you both.

its what we all aim for,I hope Graham is now drug free for many a years its a great feeling I had four years drug free remission, we went and done what we wanted to do with no restrictions.

Get out their now and enjoy Life, once again well done and have a great time.

Love Tom Onwards and…[Read more]

Hi Susie, you might think I am a bit hopeless, but I didn’t ask. The Consultant said ” the proteins are too high for MGUS so you are asymptomatic”, told me the management plan and I scuttled out of the consulting room.  I have requested a diary and am going to get all my results to date recorded for me at my next appt.

I am on two monthly m…[Read more]

Hi Andrea, I think I am lucky as well because of early diagnosis. I am trying not to worry ( not always easy) and really appreciate all the helpful responses I have had to my post.

It is certainly a different life, I will request a Myeloma UK Patient Diary which I am sure will be helpful.

Best wishes with your treatment.

Karen

I’m afraid it was slightly different for me as I live abroad. Here they always do it in Hospital. I believe a number of UK hospitals do the Chemo as an outpatient and then when the white blood cell count drops, they are admitted.

Sickness is normal, I assume they have given him Mephalan which is very very strong. I was sick for nearly two weeks straight after the mephalan. His medical team will be very experienced in this and so will be looking after him.

Hi Susie, I can see why you are concerned. I am no expert but I would have thought that a pp level of 36 would trigger some form of treatment. I was diagnosed with myeloma with a pp reading of 44, my chemo treatment started, followed by a stem cell transplant. My last pp reading 15 months after stem cell transplant was 2.2 having risen from 1.9.…[Read more]

Kalimera Helen.
Sat in the Greek sunshine.
Just read your post and I can totally understand your dilemma about having a transplant. I tried putting myself in your shoes and I couldn’t come to a completely satisfactory conclusion as to the drugs versus transplant argument. I know when I was told I couldn’t have an Allo I was gutted but that was…[Read more]

Hi there. Don’t think your complacent, just blasae maybe. Perhaps having lived with MM for a number of years makes it part of normal life. I suppose it’s the same for people in various walks of life – ex pats who live abroad and see how the new ex pats look at their new surroundings in wonder or forces personnel who have been at a particular…[Read more]

Thank you to all for your replies. I guess the message is “stay positive, live your life each day and get used to the uncertainty”.

I have never  lived my life in two month time slots and so this might be the hardest bit to adjust to. Otherwise I have always been a positive person and hope this will help me through the next few months as I…[Read more]

Hi Dick

After 3 years plus on this roller coaster and learning an awful lot on the way,plus hospitals have very different ideas about when treatment should begin plus how test are interpreted !!!
We have come to the conclusion ,when you have your BMB have bloods taken before hand if you need any bloods or platelets have an infusion ,then they can…[Read more]

Oh crap! Half of my post has disappeared! First I can’t get signed in now this!!

Anyway Helen you probably know more about your options than anybody else on this forum though I do suppose that could be a curse rather than a blessing at times.
My latest news is last weekend was my nieces sons birthday so we had a little party. Wednesday I got a…[Read more]