• Good day to all,

    I have been through all chemo and last November completed my SCT. At present I come under 2 consultants in different hospitals.

    My consultant 1 has said I can travel once the final bone marrow test has been done and I will confirm with consultant 2 where I had the SCT done.

    I want to go to Australia to see my sister April/May.…[Read more]

  • Hi to all and many thanks for all your helpful replies I have printed off and highlighted the relevant points you have all indicated.

    I wondered why a fella I saw (obviously being taken to a ward) had a bag of toilet paper!!!!! now answered.

    Regards to you all.


  • Hi Rebecca. Many thanks for your lovely reply it was appreciated and I will even print it off to take with me. It is a daunting experience even with the information and backup that I have. At moment I have a small list to take including eye shades and ear plugs. Your suggestions will be in there. Phone, laptop with movie’s standard now I imagine.…[Read more]

  • Good day to All.

    After 5 cycles I am , at 67, about to start my SCT treatment. Tomorrow I have my “long line” inserted, then later on 6th October I am having the harvesting carried out. This is all occurring at the Southampton General Hospital.

    Can anyone give me some tips from now and when going into isolation. I have tried finding any info on…[Read more]

  • Hi Helen.  Sorry to hear about your uncle and his problems. I started chemo and steroids going on to thalidomide after the first month. I have been lucky with no after affects from anything so it seems strange that he has been affected so quickly.  I am sure the hospital will find out what it is that your uncle is having a problem with, possibly a…[Read more]

  • Hi Den. I am now completing my 5th cycle. I started with 100mg of thalidomide then upto 150 and have been on 200mg for about 2 months. There are different reactions to all pills and potions supplied.  These then get adjusted as time goes on depending on how it is reported back to your doctor. My steroids were reduced when the Thalidomide went up.…[Read more]

  • Hi to all. I have MM and in my 5th cycle of CDT and being offered SCT after. All your experiences have given me encouragement and will go with it. The section on how to get through and what to take is interesting and will help. 3 cheers for phones/laptops/kindles etc. Thanks to all

  • Hi Dawn

    Welcome to this very helpful forum with plenty of help and support. I was diagnosed this March and now on my 4th cycle of chemo, steroids, thalidomide and a few other things thrown in. Bone strengthening just started.

    My main advice at the beginning is to take someone with you especially at the beginning then discuss it later so that you…[Read more]

  • Hi Treakle (love the name)

    As before sorry that you are on this site but there are plenty of positives. I was diagnosed in April 2014 after a number of months being treated for muscle strain by my GP  (you can see my initial joining intro “Start of a long Journey”). Initially there are plenty of hospital visits but once the cycles begin, mine…[Read more]

  • Hi Vicki & Colin.

    Appreciate your reply and as said there are different treatments out there.

    I am lucky as my wife has been with me from day 1 and attends all visits with me (well I can’t be expected to remember everything). If there is a right time then as I was due to retire anyway more time can be given to the fight.

    I don’t envy anyone who…[Read more]

  • Hi Mavis

    Thanks for the reply. TEAMM trial is where newly diagnosed Myeloma patients are asked to take tablets daily for 3 months. The tablets can be placebo or the real thing. They are trying to reduce infection in Myeloma patient’s. It does mean filling in a daily diary with temperature and giving them samples and blood on a regular basis. As I…[Read more]

  • Hi to all.

    Many thanks for the replies. I had no side affects to the chicken pox so count myself lucky. I am on the TEAMM trial so IF I am on the real “stuff” did this help.

    No indication as to where I caught it so apart from self imposed quarantine all has gone well. I wanted to go to the Southampton meeting today but advised not to “just in…[Read more]

  • graemeandrewartha replied to the topic Pain Type in the forum Newcomers 7 years, 11 months ago

    Hi Susie

    My main pain now is in the left leg/hip area which is where the bone has eroded. I like you am ok when sat or lying in bed. Its that sudden involuntary movement that hurts the most. I am  fine once I am up and moving around, it eases a lot until the next sit down.

    I am trying not to take to many pain killers and have got used to it and…[Read more]

  • Mystery solved.  I have chickenpox.  Call from hospital late last night from duty doctor confirming this. Another visit to the hospital for a prescription.


  • Hi Helen

    Thanks for the message. Nurse specialist has left. Rang hospital and got called in asap. No clue what it is.  Had swabs done and even medical photos taken. Now off thalidomide for 10 days just in case. Will let you know results. Regards. Graeme

  • Good day to you all. During the last week I have had my Thalidomide doubled. Now I am coming out in spots turning into nasty looking blisters.

    Has anyone else had this problem as I cannot find any other reference. They do not hurt and not itchy but I am concerned about possible infection if they open.

  • Good day Stanley-1960

    Thank you for your post.

    Apart from my leg we seem to be a matched pair. The consultant Orthopaedic surgeon who first spotted this has said that due to the size of the hole in leg/pelvis he would not even consider trying to fill it. If it was to be done then I would have to go to Oxford for the specialist hospital. He is…[Read more]

  • Hi Sara

    I had symptoms for over a year. Always after driving. Get out of the car and I would ache around the top of the leg area. Assumed that it was muscle,  walked around for a few minutes then it would disappear so carried on thinking it was a minor strain. No point in going to the doctor as it always went away. It was only later when it did…[Read more]

  • Hi Sara

    Interesting question. I was mis-diagnosed for a while until I actually got into the main hospital where when it was recognised. Then I couldn’t fault the treatment. I had never heard of it just thinking it was a muscle strain! !!.

    1) No blood’s prior to main hospital visit then specific bloods requested.

    2) Not sure about the calcium…[Read more]

  • graemeandrewartha posted an update 8 years ago

    Just started Thalidomide. Doctor said take steroids in the morning as they wake you up. Take thalidomide at night as they make you sleepy. 1.5 hour’s sleep last night eyes wide awake. Is this experience found by others. Now resting!!!

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