My general health was good. This was discovered when I went to GP about left hip problem and saw the Orthopeadic consultant.

Full recovery was about 3 months

I manage day to day with some limitations.

Endrgy levels for me can be low with need to rest when body tells me to. I have learned not to be “macho” and accept the limitations.…[Read more]

I don’t  think you have to be “very strong” but you do have to be prepared for the possible unpleasant side effects of the treatment.

With out to much detail here it is a decision you will have to make after reading up on the treatment and whether it is for you.

I was in for 3 weeks.…[Read more]

Sorry to hear about your husband, makes it more difficult at a younger age.

I went through all stages and treatment before SCT. Sorry to say that I only got 10 months remission and now just finishing my 7th cycle of treatment again but will not be doing the SCT.

My main point is that with all medical procedures nothing is…[Read more]

Having been through what your husband is going through and SCT my main recommendation is listen to your body. Do not fight the tiredness and if possible go for a lie down or rest.

My Myeloma came at a time when I could retire (67) which allowed me to rest etc. I dont know how younger people who may have to work deal with it.

We men do…[Read more]

Sorry to hear about your dad and the possible outcome that it may be Myeloma.

I was 67 and had been sent to orthopaedic for a “pain” in the hip last year. Based on his knowledge and CT scan I was sent to Haemotology for further tests and Multiple Myeloma was diagnosed. I too have lesions and tiny holes all over but touch wood none…[Read more]

Sorry to hear your news about your other half.

I to was diagnosed with MM at 67 with all relevant bone lesions. There are others on this forum who can help you with what all the relevant test results mean, I personally do not take much of that in but my consultant is excellent and he tells me if all results are going in the “right…[Read more]

I had my SCT last November and have just received a letter informing me that I am now due my Vaccinations. But no live ones.

The SCT as explained to me kills of all past vaccinations. Before leaving SCT I had a course of something to prevent pneumonia and since then have been on Aciclover, Pennicilin & Co-Trimoxazle.

I did have…[Read more]

I completed my SCT last November and at present am in remission but still taking relevant drugs as the immune system improves.

SCT can be very painful and unpleasant but is very doable. Mine was 3 weeks exactly in Southampton Unit with approx 6 weeks after at home before feeling really well enough to do anything.

It is in my opinion…[Read more]

I have been to Australia and returned via Hong Kong.

My online insurance was very reasonable. When I can I will get onto my laptop and find the name of it. Frozen out with Windows 10 at moment.

For Australia it is worth remembering that there is a reciprocal arrangement similar to…[Read more]

Thank you for the feedback, sorry for the delay in replying.

I will try the charcoal tablets first and then if they do not work will start looking at my food intake.

Regards

Graeme

The down side is since coming out of SCT I have had the noisest  rumbling stomach imaginable. It can be heard…[Read more]

You can only go with the delay and enjoy all you can prior to your SCT. My delay was due to having a dose of “man flu”. However once clear and office informed I was then told to wait for a call. I think they can only give you initially a period in time as…[Read more]

No question is silly when it comes to MM and how you can assist your partner.

Not sure from you your post how long you are looking for to stay in Sutton. Do you drive, how far away are you from Sutton. I was curious about your dilemma and looking around Sutton  not many dog friendly hotels, were you thinking of leaving it in the…[Read more]

Congratulations on completing your SCT.  Mine was end of November 2014 and like you had sickness and in my case severe sore throat.

However the point is its doable and anyone reading these views and advice on how to get through it will, I hope, be heartened. The staff at all these hospitals seem wonderful and I can add Southampton to…[Read more]

Welcome to the forum even though we would rather not be here.

I am 68 and reasonably fit. I was working up to last year until my leg became to painful for stairs and ladders.

I have recently been through SCT at Southampton Hospital. Yes it is unpleasant but as all will tell you it is doable.

There are ways to alleviate or help you…[Read more]

Regards.

Graeme

I am lucky and feel so well at the moment but will need insurance and will not travel without it as not worth the risk.

Regards

Graeme

I completed my SCT late November 2014.

The bottom line is it ‘aint pleasant but as others will tell you it is doable.

The staff I had were brilliant (Southampton General Hospital) and at all times I had a problem, sickness, sore throat etc they came up with a solution (normally in a bag)!!!!

Take advice already on this website as to…[Read more]

Your dad needs to remember that it was the pregnant women that had the problems with thalidomide not the men.

He will, if same as my wife and I, get a “safe  sex” lecture because of what it can do to women who get pregnant. At 67 & 66 it raised a smile with us a…[Read more]

I have been going through the Internet and have found a company for £789.00 covering my Multiple Myeloma and Crohns for 31 days.

This was done via their Web site so further checks required. I will make a note of yours and look into it.

Regards

Graeme

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]

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.

Graeme

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]

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]

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]

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]

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]

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]

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]

Regards

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

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.

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]

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]

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]

It is good to know the good and possible bad side of Myeloma and treatment.

Can I ask, when you were in remission how did you know it had come back. Same signs as before or something “not right” or other.

The resting I have to agree with. Did not want to but after a lie down I do feel better.

2nd…[Read more]

I have been surprised by the limited knowledge of GPs, Physios and Chiropractor (all…[Read more]