Hi Carol,

Very few people achieve complete remission with the most stringent tests, many do not even loose their M protein/ FLC completely, and I have noted at my treating hospital, (well known) it seems some people after SCT  do have some level of maintenance aimed at pushing the remaining levels to a complete remission or a lower stable…[Read more]

Hi Mavis

Like you I have lots of lytic lesions etc. and have at different periods of time had bone symptoms from disc fracture/collapse from the myeloma, most recently a new area of the spine has been giving serious pain so I cannot sleep. I do not wish to be drugged and have tolerated spinal pain all my life, so continue to try and ‘live…[Read more]

Hi Mavis

Like you I have lots of lytic lesions etc. and have at different periods of time had bone symptoms from disc fracture/collapse from the myeloma, most recently a new area of the spine has been giving serious pain so I cannot sleep. I do not wish to be drugged and have tolerated spinal pain all my life, so continue to try and ‘live…[Read more]

Social Services apply their own assessment and threshold for services. It helps if the GP and other health professionals involved with your mother’s care writes to social services referring her for help giving details of the care help she needs with having her illness. A means test is also applied, based on income and savings. Anyone can buy care…[Read more]

DSX very good of you to post this at a difficult time for your family. Your SIL had a very difficult time overall. Do you know what her treatment consisted of?

You do not mention what her stage of disease was or her age. Sometimes these things also can play a part in how the body copes with what is an effectively aggressive treatment regime.…[Read more]

Dear Janey

So sorry to hear about your dad and the problem of trying to work out what is happening when you are not being informed. Having Power of Attorney for Health and Welfare for your father in a time he is confused would have given you the right to get information on his behalf.

Some infections can cause confusion. Is he still on…[Read more]

hlpb- just to add your mother’s age may mean osteoporosis could weaken bones from both natural age changes in addition to the steroids used in treating myeloma. So it is morey complex to think about risks for for individuals. Lesions alone are not the issue. I expect in your mother’s case it is a balancing act which way to go in the decision for…[Read more]

hlpb- just to add your mother’s age may mean osteporosis could weaken bones from both natural age changes and the steroids used in treating myeloma will additionally weaken the bones by increasing osteporosis. So it is morey complex to think about risks for for individuals. Lesions alone are not the issue. I expect in your mother’s case it is a…[Read more]

I think this is a complex issue when adults have a history of not robust dental health / oral hygeine and then have chemotherapy, as this is when research suggests risk of ONJ is greater. Extraction of one suspicious tooth before zometa does not mean another will not give problems later during treatment.

Also the risk in relation to fractures is…[Read more]

Dear Val

Sorry no one responded to you and that you are unhappy with the information / treatment from current consultant.

Have you asked questions of the consultant as to what he means by ‘body is quite resistent to chemo…’ I assum he is talking about paraprotein / free light chains not going down much, but you need to ask. How many chemo…[Read more]

Dear Val

Sorry no one responded and that you are unhappy with information / treatment from current consultant.

Have you aske questions of the consultant as to what he means by ‘body is quite resistent to chemo…’ I assum he is talking about paraprotein / free light chains not going down much, but you need to ask. How many chemo sessions were…[Read more]

Dear Vicki,

sorry your consultation was so negative. Where is Colin being treated? You could ask to be refrred elsewhere for second opinion. It is evident that not only is MM a very individual disease in terms of its behaviour, but there are no real ‘rules’ as to how to treat it, so it is guessswork, save the guidance from NICE, whch the NHS…[Read more]

Hi Dawn

I do not know how USA works, but here although one might be under a consultant they ususally in teaching hopitals operate as part of a larger team  and it is my experience that you do not always get to see the same person. Do you find you see the same doctor at follow up appointments or with treatment decisions? That is something that…[Read more]

Hi Dawn

I do not know how USA works, but here although one might be under a consultant they ususally in teaching hopitals operate as part of a larger team team and it is my experience that you do not always get to see the same person. Do you find you see the same doctor at follow up appointments or with treatment decisions? That is something that…[Read more]

Hi Annette

As I understand it is Revlimid (lenalidomide) that has been indicated to give rise to secondary cancers, not the Prednisolone itself.

Peter- You question is interesting. I have noted that people not ‘fit’ for SCT are often prescribed Melphalan / Prednisolone combinations, most are elderly people possibly. So normally prednisolone is…[Read more]