Hi Jill. I'm glad your mum is doing well with her treatment and hope she keeps her spirits up. Three lots of treatment in four years sounds a lot! My mum will be taking Cyclophoshamide only plus a Bisphonate to strengthen her bones as she has three lesions. Her Consultant wanted to take a liberal approach as mum feels well and he didn't want to make her feel ill. We picked up her meds and the only extra one was Domperidone in case she felt sickly the first couple of days. Mum just has to take ten small chemo tabs once a week and the treatment will last 6-9 months. She had her first lot last Thursday and so far feels fine. A little sickly at times but then she is also having to fit in all her other tabs for her heart and high blood pressure etc.
I ring her during day to remind her to take the Bisphosphonate but she is very good at remembering. On top of the meds she has to take her temperature twice a day in case her white blood cell count goes down, and they've given her a card to take to A & E should her temperature be too high. I guess they would give her antibiotics then. It will just take a while to get into a routine but I think mum will cope fine as long as she doesn't feel I'll. Mum has always said she wouldn't have chemo through a drip but doesn't mind the idea of tablets. They didn't say anything about drinking lots of water, perhaps because she isn't taking steroids or thalidomide. Perhaps we'll ask about that next week. She has to have a blood test next Wednesday and we ring for results the day after. Thanks for the chart, I will sort that out for her but I guess it's not so bad for her as she doesn't have so many to take. How does your mum cope with her treatments. Does it make her feel ill being on three types together? You said she has had periods in between with little treatment? What has this been? I assumed once mum finished her course she would be free until her para protein levels went up again. You said the treatments worked but how long for? Mum was picked up about 5 years ago when her pp was just 12 and now the totals are 44. They did say about a year ago that if the levels kept going up they may start treatment so we weren't surprised. Didn't expect the three lesions though as they've always said her calcium levels were ok.
Sorry for so many questions but it's useful to have other peoples feedback although I appreciate everyone's experience is
different. I do hope your mum stays well for many more years. We're just taking things day by day and my mum is very strong. People don't even realise she has Myeloma as she looks so well. Perhaps that's why it's easier for me to cope. It would be much harder if mum looked and felt ill. I wish you and your mum well and hope this third treatment knocks her pp levels down again. If you don't mind me asking what are her levels now and after treatment what do her pp levels usually go down to.
Best wishes Sandie x
Thanks Tom. You are probably right about the pain being arthritis. At least once I know I will start to think about what exercise I should do to try and make things better. May be a trip to the osteopath!!, Oh what fun getting old isn't it. You are also right about the glass half full. I need to be more optimistic…… Mum is great as she doesn't let anything get her down. Thanks for all your good wishes.
Sandie xx
Hi David
I think it was unfortunate that the day I went they had been having problems with their computer system and he couldn't access the full body x-rays. The dental x-ray was done on another day and he did have the report for that one.
I guess I'll know soon enough. I do have osteo arthritis in various places on my body and my pains may just be due to that. I've just bought a Pilates machine from QVC and I'm going to have a go with that to see if I can improve my mobility etc., I'm only 58 so really should be fitter than I am.
Best wishes.
Sandie
Thanks Jet
Sorry I haven't been on here for a while. The pain in the jaw ended up being a chronic dental abscess and I ended up having the tooth out. However it's been two weeks and two lots of antibiotics and I still have some pain in the jaw. I did have my appointment with the haematologist and he told me the results of the lower jaw x-ray so I knew I didn't have any lesions which was good news of course. I'd only had my full body scan a few days before and he didn't have the results of them so I go back to see him on the 24th and he will have my bloods and x-rays. He said that although the protein levels are low he would be able to tell if I was at high or low risk of developing Myeloma in the future. I have had so much to deal with my jaw pain that I haven't even been thinking about anything else so I guess that has done me a favour. Before I know it I will be seeing him again and will have more info. Then on the 3rd June my mum has her appointment with him and I am just hoping that her protein levels etc., haven't increased. She is still very well and looks great and it's hard to believe she has anything wrong with her.
I'm going to have a look at somje google images now!
Best wishes.
Sandie
Thanks Eve
I don't know if hospitals vary. I spoke with the radiologist last week and actually took the Myeloma book which pointed to lower jaw, and she said that they only x-rayed from mid skull upwards and therefore told me to go ahead with the full dental scan for the lower jaw. I know the Consultant will be able to look at the x-rays, it's just whether or not the radiologist will have had a chance to comment. I've never seen an x-ray with lesions so perhaps the Consultant won't need a report and will be able to see for himself!
Best
Sandie
Hello
My mother is 85 and in early stages of MM. I am 58 and have recently had some blood tests because of bone pain. My protein levels are 3.9 and the Consultant is arranging for a full set of x-rays and some additional blood tests! So, although doctors say there is no genetic link I must admit I am a bit concerned. I would say that anyone having this in the family should get checked out if they are experiencing bone pain, anaemia, infections that won't clear etc., Better to be caught early and get treatment than to ignore it. Alot of people don't get diagnosed until the disease has really taken hold.
Best wishes.
Sandie
Hi Amanda
My mum has been going backwards and forwards to the hospital over the last couple of years as her protein levels were too high and they have been keeping an eye on her. When it first started the consultant said if it increased at the same rate she could reach 100 before it got to MM. Then last year she had a knee replacement and two weeks later ended up in hospital very ill with an ulcer bleed. Her haemoglobin went down to 6 and she had to have lots of transfusions. It took quite a while for her haemoglobin to get back to the right level and she is still on iron. My mum is 85 now and diagnosed with definite low level MM. Even so they are not giving her any treatment as her kidney function is good and everything else seems to be ok. So I understand why you are worried that they are not doing any treatment, but as we have been told, they don't like to start it until it is really necessary. My mum looks great and apart from some heart problems and osteo arthritis, is really healthy, and she very rarely has any infections.
I think you have to trust that the Doctors know best. I wouldn't want my mum to start treatment which could make her ill and then cause her other problems like her heart getting worse. She goes to see them every three months and they do fresh blood tests, so we are quite happy to do that. If anything gets worse they have told us they will start chemo tablets. I'm hoping that she can keep her protein levels etc., as they are now, for several more years as I don't like to think of her feeling ill with chemo.
I find it hard to take in that she is at all ill as she certainly doesn't look it, and she has a really good attitude and just doesn't let it bother her. I find it hard to be worried at the moment as it wouldn't do either myself or my mum any good. I think like your mum, it is just good that they have found it at an early stage and will continue to keep an eye on it.
Try not to worry too much. I know they tend to say 5 years but I read somewhere about a woman who had been having treatment over 20 years and is still with us.
Take care
Sandie
Thanks Eve
I certainly would want to know and as the doctors are quite used to me asking questions when I go with my mum, they know what sort of person I am. If everything comes back clear then I will go back to my docs and try and find the cause of my various pain problems. I need to know one way or another……..
Regards.
Sandie
Thanks Bridget and Michelle
I'm fairly stressed with work at the moment,but I'm trying not to think about it too much. I will feel better when I have the scans and new bloods done. I was tested a while back for my bone levels re: osteoporosis and was told they were a but lower than normal. That maybe just that I'm post menopause now (although still suffering with hot flushes!!). I also appear to have inheritated my mums osteo arthritis gene as I already have it in various joints and I'm only 58. I recently had my hips x-rayed because my 'sit' bone one one side is giving me pain. The x-rays showed that I had slight osto arthritis in my hips. That's about par for the course as each time I have a joint x-rayed they tell me the same thing. When they do the x-rays for Myeloma, do they know the difference between what looks like arthritis and what looks like bone damage due to Myeloma?
When we saw the consultant this time it looked a bit ominous as there were two nurses in with him (one was a Myeloma nurse who was really nice and gave us an informaton pack). I thought, do they think we are going to get upset? The strange thing is that when my dad was diagnosed with cancer I fell apart, but he was 69. I find it hard to think that my mum actually has cancer at all as there are no symptoms, unlike my dad who couldn't eat properly and lost loads of weight. My mum is quite plump and looks really healthy. She gets tired but then she is 85 and takes various medications, some of which make you tired anyway. I think they have made the right decision in not treating her and I'm hoping it stays that way this year. She had a rough six months last year, and I wouldn't want her to feel ill because of the treatment. Even though she is 85 they have said that when and if the time comes of course they will start treatment.
Oh well, I'd better get back to work. Will let you know when I have my tests and receive the outcome.
Love
Sandie x
Thanks Jo
Do people get false alarms when their protein level is elevated? I guess if I didn't have so much bone pain I wouldn't have had the blood tests and I wouldn't be any the wiser. Perhaps having the pain has done me a favour and brought it to everyones attention. Then again, if I didn't have bone pain perhaps my protein levels would be normal. AArghhhh!!!!!With my mum the Consultant said her levels could go up and down a bit but they will never drop down substantially without treatment. I'm just hoping they stay on an even keel. I'm going to do some research and devise a healthier eating plan for myself and my mum. Lots of antioxidants couldn't hurt.
Best wishes.
Sandie
Hi J
My mum has been diagnosed with Myeloma but at present isn't having any treatment, and is actually feeling very well. We go back next week for the results of her bone marrow biopsy and latest blood tests. Depending on the outcome the docs. will decide her treatment. I was told there was no genetic link but I have read several postings on this site which make me think otherwise. I am 58 and because I have lots of various bone pains I got my doctor to do some blood tests before Christmas. When I went for the results she said the report said that the protein levels were a bit of a grey area. I asked her to send the report to my mums haematology clinic as I wanted to know what this meant. She sent the letter before Christmas but when I rang the hospital last week they said they hadn't received it (usual story). The hospital asked the docs to fax another copy!! So, when I go with my mum next week I'm going to ask about my report. I would be interested to know more about any genetic study surveys. If they are doing it it does make you think that there may be a link like a lot of other cancers I guess.
All the best
Sandie
Hi Sharon
I am so sorry you experienced such a painful time. I hope you had someone with you for support. If they had hurt my mum I would have had a right go at them. She was very calm and a good patient, but had she felt pain she would have stopped them, and would never have had the procedure repeated. We told them that before they started so they knew our feelings on the matter. The doctors were nice which helped and perhaps because of her age they were extra careful I don't know..
If you have to have it done again do insist they they give you anaesthetic right down to the bone and that they don't start the procedure until you can't feel anything. That is what the nurse told me they would do and they were true to their word.
Best wishes.
Sandie
Thanks Bridget
If she ever has to have it done again I think we would ask for the same doctor. He obviously did listen to her and ensured that enough local was put in place so she didn't feel anything. Just goes to prove that it needn't ever be painful, and I feel sorry for anyone out there who has had a bad time. To all of you, make sure you tell the doctors before they start that you don't expect to feel any pain. It can be done!!!
Best wishes
Sandie
Thanks Nettie
I agree, I think we did the right thing in having a go before they even started. It obvously scared the one doctor who then got his more qualified colleague to do the procedure. In fact we had seen that doctor before in the clinic.
Power to the patients I say!!!
Best wishes.
Sandie
Hi Mavis
I don't quite understand. When my mums protein level was 11 they said that if it increased at a slow rate she would get to a 100 before needing treatment, and yours is 10. At that level they were still saying nothing to worry about. It was only when it jumped from 20-30 in 3 months that they were concerned. I would have thought that at 10 they would be just keeping an eye on you and not considering treatment. I was under the impression that it was only when it reached a higher figure that it definitely had turned to Myeloma.
I know it is all a bit complicated so perhaps you have other factors? They found just one point on her clavicle that could be suspicious when she had her full body x-rays, but it doesn't cause any pain. She knows she has osteo arthritis but doesn't appear to have any new pain anywhere. I guess they know what they are doing and when the right time to start treatment is. Having read about other peoples bone problems, you certainly wouldn't want to delay treatment and then start to have problems with bones that couldn't be rectified. It is hard to think of treatment when you feel well, but I think you have to put your trust in the professionals.
Hope your levels stay low and they don't have to treat you for a long time yet.
Have a good Christmas!
Sandie