[CarolsymonsParticipant]

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

[CarolsymonsParticipant]

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

[CarolsymonsParticipant]

Sad, sad news my heart goes out to you.

Carol

[CarolsymonsParticipant]

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

[CarolsymonsParticipant]

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 in special needs as a SENCo in an inner London high school, but retired last year at 64. I just knew I wouldn’t be able to handle the stress of the job after the side effects from the radiotherapy and chemo treatment.

Carol

[CarolsymonsParticipant]

Good news…long may it continue!

Carol

[CarolsymonsParticipant]

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 not I asked for a blood test to check immunity levels. That came back saying I had no immunity to tetanus, whooping cough, diptheria, etc etc so I gave in and had the immunisations but spread them out over several months. I rejected polio and hepatitis, as I believe I am low risk for them and will not have the measles vaccine (which they offer 2 years after transplant) in case something more comes from the research on that. I did choose meningococcal vaccinations as I have a 2 year old grand daughter…..not sure they are necessary unless you have contact with younger children or teenagers.

Carol

[CarolsymonsParticipant]

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 printed results for me. As treatment progresses it is reassuring to track the falling numbers.

Carol

[CarolsymonsParticipant]

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

[CarolsymonsParticipant]

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 had with your mum. Mums are just so precious.

Carol

[CarolsymonsParticipant]

Well done Richard! Great result!

Carol

[CarolsymonsParticipant]

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

[CarolsymonsParticipant]

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

[CarolsymonsParticipant]

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 with one day. Some of us sooner than later, unfortunately. My thoughts are with you both…treasure every second together.

Carol

[CarolsymonsParticipant]

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

Carol

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