[johnwishartParticipant]

Hi,

my dad has mm for around 6 months after been found, many months before that too if he was honest about his back pain etc

at the moment he has a curved spine, can’t move with heavy legs,lost 3st in weight,and not the man I know.

this saddens me to write this but I feel we don’t know what’s going on

he is on his fourth cycle of chemo in tablet form and his bloods we are told are ok

its like they found mm and started the chemo and that’s it, what’s next, we’re never told

its like he’ll take the courses and that’s it

sorry for rambling but it’s hard.

any advice. We do ask the doctors the outcomes and that but still vague.

 

thanks

[CarolsymonsParticipant]

Hi John

It seems that treatment in the UK is dependent on age and physical fitness. Usually the doctors don’t offer stem cell transplant over 65 years of age but there are older patients on this forum who were offered it and got through the process. I always ask for a printout of my blood tests so that I can track my paraprotein (iga) and also my heavy/light chain ratio as I have iga lambda myeloma. It is difficult for doctors to forecast prognosis as this disease is so individual. Are you working with a myeloma specialist? If not then ask to be referred to one. My consultants at Ealing and Hammersmith Hospitals laid out a possible path when I was diagnosed and luckily all has gone smoothly. I am now in complete remission 7 months after stem cell transplant (SCT) If your dad has fractured vertebrae I know some people here have had kyloplasty which has provided relief from pain and had them walking again. I was fortunate in that only my collarbone was eaten by the myeloma gremlins, not my spine. Keep asking questions and if you don’t get answers ask to be referred elsewhere.

Carol

[PerkymiteParticipant]

Hi John, It is very bewildering when you first start down the MM path. I started on the path of 5 years ago so do not give up. Carol has given some good advice and information. I was 66 when first diagnosed and had a transplant at 67. I have always kept my self fit and active and this counted a great deal in the decision to let me have a SCT.

kind regards – vasbyte

David

[hlParticipant]

Hi John, we’ve been going through the process for over four years now, and to be honest we feel we’re in the same boat as you still.  I don’t know why some Dr’s prefer to keep you in the dark rather than being honest about the process; maybe they just don’t know.  We’re often told there are lots of options to try, so keep your pecker up.  My husband had tablet form to start with after it took nine months to diagnose.  His vertebrae suffered with the delay in diagnosis but once they got the myeloma under control he was able to have a vertebroplasty procedure (cement inserted into the spine) to strengthen it.  (Not sure if ‘vertebroplasty’ is another name for ‘kyloplasty’?  If it is, it adds to the confusion doesn’t it; one Dr. calls it one thing and another Dr. will call it something else).  Anyway the vertebroplasty alleviated a lot of pain and also strengthened the spine.  I recommend you read up as much as you can and then if you go to clinic appointments with your Dad you can raise questions at the time.  It’s important to remember they cannot cure myeloma, only treat it, everyone is different, but you can see from this website treatments are getting better all the time and people are living longer with the disease.   Best wishes H

[mhnevillParticipant]

Hi John

Sorry your Dad has been having such a bad time. It sounds as if the chemo is doing the trick. The problem is, following remission, is that improving mobility depend on getting supportive physiotherapy. I have re mobilised twice from MM and four times following hip operations. It isn’t a bed of roses, but you can improve whatever your present situation with determination. I currently am suffering from bone damage to my shoulder. As I have been told physio won’t help, I am now taking private Alexander Technique lessons. I am amazed how they have helped.

Re SCT. I am 69, 65 on diagnosis. For all sorts of reasons I didn’t want to press for a SCT. It is true I have lots of bone lessions, but, after 6 lots of CDT over 18 months ago I am still in complete remission.

Not an easy cancer to live with, but there is hope.

Very best wishes. Mavis

[janwParticipant]

Hi John

Sorry to hear you dad is finding the treatment difficult. Some people are lucky to sail through chemotherapy without many side effects, but others can suffer various side effects such as weight loss, fatigue, infections, nausea, muscle weakness, loss of taste, hair loss, etc. Like your dad, I also have a curved spine due to three collapsed vertebrae prior to diagnosis of myeloma and during treatment my weight loss was over four stone with heavy legs/muscle weakness in the legs making it difficult to walk for months. Fortunately, the drug related side effects will gradually disappear after treatment finishes.

If you want to find out more about myeloma, the treatment options, clinical trials and future drugs then I would recommend you attending one of the many myeloma information days run by Myeloma UK across the UK (see this site for more information and dates about the information days). The sessions are well attended, with myeloma consultants, nurses and patients delivering a variety of topics. There are plenty of opportunities for discussions with other myeloma patients and specific sessions dedicated to question and answers for patients and carers.

I hope your dad’s treatment is successful.

Kind regards Jan

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