I haven’t tried this but somebody on the Australian Facebook group has posted that they have had great success with massage using a moisturiser containing cocoa butter. Might be worth a try and certainly better than medication.

Carol

I have read of other patients in your dad’s situation who gave achieved remission with different drugs after a failed transplant, so don’t despair just yet.

Carol

Sad, sad news my heart goes out to you.

Carol

That is a wonderful result for your husband’s light chains….stay hopeful as he is certainly responding very well to the drugs so far.

Carol

On diagnosis the consultant said to look at myeloma as a chronic disease, rather than an incurable cancer and that has helped me. I am now 18 months in complete remission after an auto transplant and just coming to the end of a 3 month holiday in Europe ( I live in Australia) so you see, don’t despair as there is life after treatment. I was also…[Read more]

Good news…long may it continue!

Carol

I was told to take antibiotics and acyclovir for 12 months after transplant, but stopped them at 9 months as I had not had any infections and specialist agreed. Re the immunisation debate….in Australia they recommended a full set of re vaccinations wanting to give me 5 in one day! As there seemed to be controversy over whether to have them or…[Read more]

Hi Sandra
Next visit ask for a copy of your husband’s blood tests. Then you will be able to track paraprotein levels, light chains and because of his kidney issues, creatinine level. I had some difficulty getting my results while being treated at Ealing Hospital, London, but at Hammersmith Hospital, where I had my transplant, they willingly…[Read more]

Thinking of you both at this difficult time, a time of course that we will all face. Treasure every day with Colin, share your happy memories, remember there are miracles for some. Why not Colin?

Carol

That is so sad, my thoughts are with you. My mum will soon be 87 and on reading your original post I visualise my mum in the same situation. As much as we want our mums with us forever, I know she would not want to suffer and lose her independence, just like your mum. As you endure the next few difficult days, remember the wonderful times you…[Read more]

Well done Richard! Great result!

Carol

Parmidronate stopped after 2 years in Australia, but I didn’t notice side effects except flu like symptoms after the first infusion. For now, so happy to be drug free.

Carol

And they keep telling us there is no genetic link? My dad had leukaemia so I cannot discount a genetic link. I Can’t convince my adult children to be tested though. The four of them seem to have their heads in the sand regarding my cancer!

Carol

Vicki what a worry for you and Colin. I do hope you are able to take him home, if that is what he wants, as it is must be very depressing being in hospital. Your sad news just brings it home to all of us, how precious the days are when we are in remission. We must try to enjoy every minute of every day, as we will all face what you are dealing…[Read more]

So sad for your family, but myeloma is treatable so mum nay well improve with drugs. Don’t give up hope yet.

Carol

I was employed at a school and was able to transition back to work both after initial treatment and after SCT. I worked 1 hour a day for a week, 2 hours daily next week etc etc., transitioning to full time in 6 weeks. I just met with the Head and she agreed this plan which was backed up by a doctor’s certificate. Surely it is disability…[Read more]

Tm1960 try the Multiple Myeloma Australia Facebook page as there may be others there who can recommend specialists near to you who may be more helpful than the doctor you are seeing currently. You need an explanation for that level of pain.

Carol

Hi Dusk
I agree with you that treatment should be more tailored to the individual. In London I was only offered the standard CDT. I asked several times at Ealing a Hospital about my cytogenetics but never received an answer so don’t know if it was even done. I had found a trial using Velcade at University Hospital but the consultant at Ealing…[Read more]

I have not been offered maintenance drugs after complete remission from transplant. First in London and now in Australia. I do enjoy being drug free though.

Carol

Post traumatic stress is a possibility after what we go through. I know I was very down about 6 months after transplant but have perked up now. Some people have seen counsellors, maybe that would help you? My family have been little help, I feel they all have their heads in the sand as I don’t look ill so therefore everything is back to normal…[Read more]