This topic contains 38 replies, has 7 voices, and was last updated by 
sandie58 11 years, 1 month ago.
Hi everyone
Haven't been on site for a while. Now mum's Myeloma has been confirmed and after an MRI showing three lesions and her Para Protein levels continuing to rise, the Consultant has decided to start treatment. Mum is 87, so a good age I know, but it doesn't matter how old mum is the thought of losing her is devastating for me. The thing is apart from lots of osteo arthritis mum looks so well and hasn't even had a cold for around 4 years. Because mum has fluid retention and a couple of heart murmurs, the treatment course is low dose Cyclophoshamide once a week for 6-9 months. They are also giving her a Biophosphonate, Bonefos I think which she will take once a day to help strengthen her bones. They said two of the lesions were very small and nothing to worry about but the third is midway down her left femur and they are more concerned about this I guess because it is load bearing and mum is carrying quite a lot of weight at the moment. She doesn't have any pain however in that area. I did ask the Consultant if a lesion can heal and he seemed to think they can with treatment. Anyone out there had this happen? We go back to the hospital next week to collect her first meds and info. Mum has been assigned a contact who we can ring at any time which is great. The Consultant is a lovely man, very patient and informative. I don't think we could ask for better treatment. Even though mum will be on a low dose I am still worried about any sign effects, although I have heard of a couple of other people on tablets that haven't experienced any side effects so I am hoping this will be mums experience. We have been told to be aware of any temperature change or illness, and if so to go straight to A & E where mum will be seen straight away. I guess they would give her antibiotics to be safe. I realise that any chemo can reduce the white blood cells count. I will find it very hard if mum starts to feel ill on the treatment as she is so well at the moment, however we both know that things will only progress now without treatment, and I'm hoping that this will knock her para protein levels down again. I know there is no cure but I've told mum I want her around for another ten years!!!! It gets very upsetting when you read of the general estimate for survival rates and there are many of you out there who are further down the line for treatment. It would be great if you could give me some good news…………. On another note my appointment with the the same Consultant is next Tuesday. I had blood tests done a couple of years ago as I was experiencing bone pain and infections. None of it was due to Myeloma but a good job I had it done as they discovered my Para Protein levels were 3.9. Since then I've been going back every 4-6 months and my last reading was 6. For some reason I'm expecting it to be worse next week. I had a throat and chest virus after Christmas which left me with pain in my back. I've had an x-ray and will ring for results before I see the Consultant. Perhaps I'm just a negative person and it may be due to arthritis as like mum I have it in quite a few places and I'm just 60! I will feel better when I've seen the Consultant and am hoping nothing radical will have changed. My best wishes to everyone undergoing treatment and all the families who are in the same supportive situation as me x
Hi Sandie
Well Good Luck to you and your Mum for the upcomming treatment and i hope your Mum sails through it with little or no side effects.
Yes i was told also to get straight up to Cancer ward if I was unwell, so your Mum is being Looked after 😀
As for you and your Pain Sandie well that might just be arthritis ( i say that as if its Ok he he) as My bone pain is down to that rather than my Myeloma.
You both stay strong and well, and Sandie swop your half empty glass for a half full one. 😀
Love to you Both
Tom Onwards and Upwards xxx
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 Sandie
Your Welcome, as for Exercise, non impact/load bearing is what you should do cycling,swimming and getting a good dog and having a long walk 😀
Getting Old aint good but am sure its better than the alternative :-0
Am pleased your Mum is one that doesn't let anything get her down as that will stand her in good stead for the Myeloma road that she will travel.
Love to you Both
Tom Onwards and Upwards xx
Hi Sandie,
My Mum is 83 (diagnosed when she was 79) and has just started her third lot of treatment for MM which is Revlimid, Cyclophosphamide and Dexamethasone. I would just say that you should be ready for there to be a carrier bag of tablets when you collect your Mum's medications as there will be the main treatment tablets, then others which help with any potential side effects. It is worth doing some sort of chart for her to mark off when she has taken them each day – my Mum would be completely lost without the chart I do for her (example attached in case it is useful!) I have also sometimes included a little section for her to write how she feels or to remind her to drink plenty of water.
My Mum has coped ok physically with the treatments in general but emotionally has found it quite hard – she was upset again today having taken all her Monday medicines but I hope she will be better once she gets into the swing of things. The main thing is that the treatments have worked each time and she has had quite long periods of little medication and reasonably good health inbetween. I think the survival rate even for elderly people is much better than even five years ago, it is just a case of managing the treatment so it doesn't have too bad an impact on their everyday life. She will value your support I know.
Hope all goes well for you both,
Jillx
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
hi there
My name is Sharon and i too have a mum who was diagnosed in december just before xmas so made for a terrible time with all the worry, which didnt help when my dad died suddenly at my house between xmas and new year. However on a positive note my mum was also fit and well at 69 years of age no infections ect so really hard to take having to start treatment , she also was being monitored for 3 years. we started treatment early jan just before my dads funeral and a bit up and down till now good and bad days and a fair bit of weight loss despite eating well but in the last week seemed to have turned a corner hope i will last had hospital last week bloods are all good and protein has gone down by half after just one course of treatment so feeling a bit more positive now and hope it will last. this is a very difficult position as i am an only child and have noone other than my husband kids and friends for support which sounds terrible but thry dont feel as i do as she is also my best friend which i have been so lucky to have but makes it so hard but here is hoping for better days to come for all of us
Hi Sandie
Sorry your Mum has had to start treatment. I just wanted to give you some positive feedback about lessions. When I had to start treatment last year my Consultant said my body was full of lessions. So much so she had me have an electric bed at home to help me out of bed. However, none of my bones did break, and although my spine continues to deteriorate becuse of arthritis, a recent xray showed no signs of lessions or breaks. So all I can say is that bones can get better. I have continued to have Zometa, an infusion four weekly, a version of bisphosonates.
All best wishes to you and your Mum. Don't want to worry you, but do keep a watch on yourself though, because I nearly missed diagnosis till it was too late to save my mobility, becaus both my GP and I put it down to my arthritis. If you have any falls because of weakness ikn one of your legs, do insist on tests.
Love and best wishes to yor Mum and to you.
Mavis
Hello Sharon. So sorry you hear that you are in the same situation as me. I know my mum has reached 87 so people would say she has had her life, however she looks and acts ten years younger and it doesn't matter how old your mum is you never want to lose her. How awful and sad for you to lose your dad, especially around the Christmas period. It's been a double whammy for you and I can understand how you are feeling as I lost my dad at 70 to cancer and then a year later lost my dear sister to cancer also. That was over 18 years ago and I know it's a cliche, but it does get easier in time. It's very raw for you at the moment. I also have a husband but no children, and although I have quite a large family, there are many family members that don't put themselves out to see my mum let alone do anything to help. This does make me feel very bitter at times. There are a few of us that are very close as we love my mum so very much. Like you my mum is my best friend and I don't know what I would do without her. I try not to think about the future too much as I know she will go one day, but I'm hoping that with treatment she will stay healthy for quite a few more years ahead. There will never be a time when I will cope better but as I am 60 I hope that if she continues to be healthy I will also be getting older. I have always thought I wouldn't live to be too old and strangely enough I am also being seen by the same Haematologist as my Para Protein levels were 3.9 two years ago and are now 7.6. Still low I know and it's not meant to be inherited. I only got checked as I had had a virus which left with me rib pain, and my 'sitbones' had also been hurting. I'd had some infections too. I explained to my doctor and she arranged for the relevant blood tests which found I had a 'grey area'. Since then I've been seen every 4-6 months. They are checking for MGUS. At the moment I am ok although I'm going to have an MRI on Friday as my back has been hurting since I had a bad virus after Christmas. I had already had an x-ray which showed some 'wedging'(whatever that means) on my T11 joint. I'm not worried at the moment as I tend to be the type of person that thinks the time to worry is when you are actually told something bad.
What treatment is your mum on? Is she taking chemo tabs, steroid and Thalidomide etc., I know she was being checked for three years and at what point did they decide she had MM. What were her PP numbers? When you say her PP has gone down after one treatment do you mean after one months worth of treatment? My mum just has 10 chemo tablets once a week and this course will last for 6-9 months. She is having a blood test this Wednesday which surprised me as it will only be a week since she started treatment. I'm assuming bloods can show a change even if it's just a small one, and then they will know they are on the right track. Because of mums age they are being liberal with her treatment as they don't want her to be feeling ill but obviously if the treatment isn't working they then may include other meds. I'm hoping that when we ring on Thursday it will show a PP reduction already. Like you I don't really talk to family about mums condition and that's why it is good to speak with people in the same situation on this forum. I wish you and your mum well and hope that her treatment continues to improve her PP levels which will then put her into remission. There seem to be new treatments coming out all the time for Myeloma which gives us all hope for the future, so try to stay positive. I know you are still grieving for your dad and all the stress of this can't be easy for your poor mum. Bad enough having the treatment but that on top of losing her husband is awful. I can understand how hard it is for you being an only child as you have no-one to share your worries with. When you are so close to your mum or dad no-one can really understand how you feel, only if they have been through it themselves. I hope your husband is supportive and you have some good friends that you can share your feelings with.
Sandie x
Hello Mavis
Thank you for letting me know about your lesions healing. Must have been a real shock to find that you had so many. When you started treatment last year had you been seen in the clinic for some time before that, or were you only picked up as having Myeloma at a later stage? They have been seeing mum for five years with her PP levels gradually increasing year by year. I don't really understand why she has the three lesions now as at her last check up they said her calcium was ok. I would have thought to have lesions the reading would have indicated there was a problem with her calcium. The Consultant did say that with the Bisphosphonate her lesions could heal over so reading what you have said that is very good news as I don't want her leg to break. She thought she would only be having the Bisphosphonate while she was having the chemo treatment, but I think she will have to continue to take it now to keep her bones strong. This is only her first week of treatment and she felt a bit sicky yesterday. She seems to think this is down to the bone medication rather than chemo, as she has to take one on an empty stomach. She has been given Domperidone for the sickness, but hasn't been taking it as a matter of course although I told her she should to prevent feeling sick. I know she has to take so many other meds for other conditions, that it seems hard to fit them all in during they day. Have you noticed any feelings of sickness on Zometa?
I am having an MRI scan on my spine this Friday just to make sure there's nothing dodgy going on. The Consultant said it could be Osteoporosis. I thought it may be arthritis as although I am only 60, I already have it in various other joints. In fact I am under the Osteo clinic as I've been told my knee is heading towards a replacement!!! Best to get it checked out although whatever the results I'm still left with pain in my back which is preventing me doing the things I want to do. I'm hoping that someone can do something or at least suggest exercises etc., Oh what fun getting old (not!!.)Luckily I was picked up with PP levels when they started at just 3.9, and had full body x-rays two years ago which were clear. Although they are now 7.6, because of my back pain the Consultant is being cautious which I am glad about. So, they are keeping a careful eye on me ( I think because of mum as well). It is hard when you have so many areas of bone pain that you put down to arthritis. Because I know of several areas that have been diagnosed I guess it would be easy to overlook something that might not be arthritis.
Mum is full of arthritis as well and she suffers a lot and is very stiff. She used to take anti-inflammatories years ago but eventually they took their toll on her kidneys, and in fact it was when she ended up in hospital with a water infection and then pneumonia, that they discovered she had a problem with her blood. She had to come of the AI and since then her arthritis has got much worse. Apart from that she is well in herself and no-one would know she even has Myeloma.I hope that you are enjoying a good period of remission and stay well.
Sandie x
Hi Tom. I have numerous pieces of exercise equipment. Can't use the exercise bike as I have arthritis in my knee and am told I'm heading towards a replacement. Haven't been able to use the treadmill as I had foot surgery last year and I'm still in pain when walking. Haven't got a dog would a cat do?? Ha ha, the only problem is long walking is out of the question because of my foot and the other one isn't much better, but I'm not having surgery on that until the left one is better which may mean having a second surgery….. I know swimming is good but I don't like it. Hmm, that leaves the Pilates equipment that I bought last year that I haven't used yet. Just going to wait for the results from an MRI scan on my spine that I'm having on Friday before I do anything. Was going to go to the Osteopath but the Consultant's told me not to. Meanwhile I'm putting on weight through not exercising and eating too many chocolates……….
All the best.
Sandiex
Hello again Mavis. Just spoken to mum to let her know about the Bisphosphonates working for you. She wondered if you were on this whilst you were on chemo meds, and if so what strength? Mum is on Clasteon 800mg, twice a day which she must take one hour before or after food. She seems to think it is this making her feel a bit sicky rather than the chemo tabs that she took last Thursday. I've suggested tomorrow she tries taking her Lanzoprazole tab when she wakes (anti acid), then having something to eat and then an hour later trying the Clasteon to see if she feels any better. It might just be trying to find the right 'pill order' that suits her. She's not keen on continuing taking a Bisphosphonate forever if they are going to make her feel sicky. Can I ask you if they have told you if you are going to be on Zometa forever now, and if so are you on a more maintenance dose now and does if affect your stomach at all? (How many mg dosage per day? Did you say you were just taking it four times a week now?)
Sorry for all the questions, but it's helpful info that I can give mum which might make her feel better about taking the meds.
Thanks Mavis.
Sandie xx
Hi Sandie,
No problem with the questions, I will try to answer them! Mums PPs were 39 when she first started treatment five years ago having been monitored for some time. It wasn't so much the actual level but the fact that they had doubled in a three month period. She has IgA myeloma with lambda light chains and her light chains were at 10,000 – this is quite high and can lead to kidney damage so she did need treatment. She had CTD for about nine months which reduced the PPs to around 11, then went onto a small daily dose of cyclophosphamide only for about two years. She did take the antisickness tablets twice a day throughout the initial treatment as she does tend to feel a bit sicky sometimes anyway, and it worked well. She then had Velcade injections earlier this year after relapsing (PPs went up to 25) and this knocked the PPs back to 21 but as soon as that Velcade treatment stopped the PPs rose again and her latest results were PPs at 39 and light chains at 10,000 so effectively back where we started! However, she did have around 6 months with no treatment last year and she was certainly very well during this time so I am sure at their age you have to balance the effect of treatment against the effects of the disease which in Mum's case have been very minimal so far.
She is now on RCDa which is Revlimid 10mg each day, Cyclophosphamide 500mg once a week and Dexamethasone 20mg once a week. She will probably have this for four months then go on to some kind of maintenance (assuming it works!)
She also has a monthly infusion of bone strengthener, has to go to the hospital for it but I think that has less side effects than the tablets. Plus she has been on Penicillin 250mg twice a day since she was diagnosed. On the nausea I think cyclophosphamide is quite likely to cause it so I have made her take the anti sickness tablets twice a day again as I don't want her to feel sick at all and want her to keep eating properly.
On the fluid issue I think it is important to drink plenty of fluid when you have myeloma anyway, and it also helps keep things moving through the system so I am sure it would be good to encourage your Mum to drink plenty of fluids if she can.
I understand exactly what you mean about quality of life and the importance of feeling well at her age and to be honest I am sure the medicines will sometimes make your Mum feel a bit less well but as long as she can cope it is worth sticking with the treatment.
Take care,
Jillx
PS My Mum doesn't do any temperature taking each day – no one told her to do that I am sure it would just focus her on the illness too much!!
Hi Sandie
Ha ha I know what you mean no exercise and too many Chocs 😀 I am a Devil for Nuts/crisps and sausage rolls lol, and i dont do Pilates, But I have Charlie our Yorkie to walk three four times a day 😎
Hope your both doing well.
Love Tom Onwards and Upwards xx
Hi Sandie
Hope my answers can help you! I was diagnosed in 2010, as I said, following a painful colapse and the discovery of a tumour. I was started on bisophonates straight away – it was called Bonefos. I didn't get any sickness from it although I found the timing of taking it a bind! About 18 mths ago they put me on a dour weekly infusion (by needle) of Zometa. I have to go to hospital for it and it takes about 25 mins, but spend much longer at hospital waiting about!!! I think I am on this foir the duartion, no one seems to want to take me off it, but watch this space!! I think, like all things with MM, they are learning all the time. I seem to remember they did a survey about Bosphosonates some time ago.
I wasn't keen to have any chemo treatment immediately I was diagnosed, so was monitored until I had my second "colapse" some 18 months later. It was then, when I had full body xrays, that all my lessions were found. My Consultant was quite upset she hadn't suspected them before, but I took the line that I hadn't wanted treatment any sooner. I hade six three week regimes of chemo CDT. I didn't have a lot of side effects except loss of appetite and horrible taste. I also had thinning of my hair after I finished the treatment! I only occasionally had to take anti-sickness tablets.
With your mum's advanced age, I think the Consultant is very considerate to suggest a liberal regime of treatment. That's why I haven't gone for a stem cell transplant. I am 68 yrs.
Sorry your Mum had had to come off anti-inflamatories. I am on Oxycontin 30mg twice a day which helps with my arthritic pain. I am also taking ai's, but they are taking me off diclafenac because of my kidneys.
Hope you and your Mum go well!
Love
Mavis x
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