Hello, sorry to hear about your Aunty. My mum is 88 and had been seeing the haemo team for several years before diagnosed with MM early last year. Luckily my mum hasn’t had any breaks although she did have three lesions in femur, spine and collarbone. There is no reason to fear going on chemo. My mum was just given chemo tablets which she took on one day once a week. They didn’t bring her pp levels down on their own and they had to add in steroids (dex) which really worked for her and brought her levels right down to 7. Actually she stopped her chemo early as her kidneys were being affected, but even just the steroids on their own worked for her. She was able to stop all treatment six months later. Mum was also put on bisphosphonates to strengthen her bones. First of all intravenously, but again as it was affecting her kidneys she was put on tablets. She doesn’t have any ill affects on these.
Is there a reason why your Aunty is refusing chemo? My mum always said she wouldn’t have chemo intravenously as in her mind it would make her feel too ill. It was just a psychological with her as taking tablets somehow didn’t seem to be like being on chemo!
Do you know why she is short of breath? Did she have this before the radiotherapy?
There are so many treatments for Myeloma now so don’t give up hope and tell her about my mum who is 89 in two months time. Unfortunately there is no cure but with treatments there can be good periods without treatment. My mum has had a year off but now her pp levels have increased again. She can’t go back on chemo because of her kidneys, but the consultant has suggested Velcade and steroids as the next round of treatment. It is good that your Aunty has a strong spirit, that’s very important. There are many people on this forum that will be able to give you good advice and I wish you and your Aunty well.
Kind regards Sandie.
Hi Nick
My mum is 88 nearly 89 now. She has been seen by the Haemo team for several years as it was picked up early that she had abnormal PP levels. Then at the beginning of last year they decided that the MM was now active and time to start some treatment. Because of her age she was just put on Cyclophosphomide (chemo tabs). These didn’t reduce her PP levels so they added in steroids (DEX). This worked like a miracle and reduced her PP levels from around 27 down to 7 and she stopped all treatment at the end of last summer. She was also having bone infusions as they had found some bone damage. She had a lesion in her femur, spine and collar bone, although these didn’t seem to cause her any problems. She did feel a bit poorly at times during treatment, but nothing too bad. The bone infusions did give her pain in her chest and they ended up swapping the infusions for tablets which she seems to be fine on. My mum has lots of other health issues as well, including breast cancer, but she coped very well with her treatment last year and she is 88, nearly 89 now. On her last visit they had found that her PP levels had gone up again and she will need to start some other treatment soon. It is a bit of a problem for my mum now as she also has stage 4 chronic kidney damage and heart failure but she is not ready to give up.
Your mum is younger than my mum and she doesn’t have bone damage which is good. Do tell her that not all treatments are bad and that they can be very successful and allow her good periods of remission without treatment.
I know how worrying it must be for you but I wish you both well. I guess as my mum was being seen for some years before the diagnosis it didn’t come as a shock and we have just been matter of fact about it. I do all the research and ask relevant questions, and mum just goes along with taking the pills!!!!
Kind regards.
Sandie
Hi Jan
Just written a really long reply and then clicked on your profile to see how you were doing and lost everything……..GRRRRR!!!!!!!!
I will have to write on another occasion now as my back is aching, but I will get back to you.
Hope you are well.
Take care
Sandie x
Hi Pauline
So sorry to hear of your negative experiences with Consultant and nurse. My mum goes to Princess Alexandra Hospital in Harlow and sees a wonderful Consultant there. We have seen him for the past few years and as I always go with my mum he has got to know us both (I actually see him myself in a clinic in Bishops Stortford as my PP levels are a bit high too). Nothing is too much trouble, he is kind, polite, helpful and always gives us all the result information we need to know, and I can ask any questions and he will always patiently explain. In fact we bumped into him one day at out local supermarket and he made a point of saying hello and asking about how mum was doing. I don't think many Consultants would be so friendly. I can ring the nurse at any time for advice although I haven't really had to do that much. I consider ourselves very lucky to be under his clinic and just hope he doesn't ever leave. My mum knows what she needs to know about Myeloma, but doesn't really think about it. She goes for appointments, has her treatments and carries on with life. I want to know everything and am a great 'googler'. I am the one who researches everything and asks all the relevant questions, partly because mum is 87 and doesn't always hear so well. I always go with mum to any hospital appointments and that is what my mum wants as she knows she can rely on me to take care of her when needed.
I can understand your frustration but next time you go do ask questions like a/what are the Para Protein levels. Have they gone up or down b/Kidney function? c/Calcium level d/Haemaglobin etc., It may be that they don't tell you because they think you don't want to know. I have come across Consultants like that before. If you go with a list of questions (I always get out my pen and paper and jot down notes), they will get used to knowing that you want this information. If you still find them unfriendly are you able to ask for a referral to another hospital?
Good luck at your next appointment.
Sandiex
Hi Jan
I hope you are feeling well and not suffering too much. We really could do with some sun as I am sure like me, relaxing in the sun does help with the bone pain a bit.
I have just done a long posting to Eve, Jill and San about my mums progress. It is great to have such good news and has helped to lift mums spirits.
I know I only had one wedge fracture and thankfully not down to Myeloma, but can understand what it is like to suffer with spine pain. Mine must be healed but I still have pain every day especially if I do anything bending over. When I first fractured it I couldn't even lift my fruit bowl or open my dishwasher or twist at all. Even sitting here on the laptop it is hurting so going to have a soak in the bath soon to ease it off. I seem to live my life sitting with a hot water bottle behind me:-/
I understand the worry about cement leakage with kyphoplasty and therefore if you do decide to go ahead at some time make sure you research the best surgeon. I don't know whether there are any steroid/pain killing injections you can have around the spine that would help. I am going to ask my doctor as I am fed up with having back pain all the time. I must admit I haven't exercised for months and am a bit worried about which ones to do as I don't want to make it worse. I am hoping the doc. will be able to give me some advice. I hope your light chain readings stay down to give you a good period of remission without treatment. Hoping that my mum will be able to stop her treatment in a couple of months time if her PP levels continue to drop so much.
Take care.
Love Sandiex
>:-( Just spent ages writing a long message and then clicked on something and it all disappeared…….
Here we go again!!!
Hi Eve, Jill and San, sorry haven't been posting for a while. Mum is doing really well at the moment. At her last Consultation her PP levels had dropped from 36 to 26, and then yesterday we were told they had gone down again to 16.2. That means there is no need for Thalidomide as the Cyclo and Dex seem to be doing the trick. This is wonderful news for mum. She was poorly with the first Zometa infusion but much better the second time. They gave her a large flush through afterwards and said this should help. For the last couple of weeks she has been pretty good. Feels fine on the Monday that she takes Cyclo and Dex, and then ok for Tues/Wed/Thursday. Then usually has a couple of poorly 'tired and cold days' and then picks up again. Last weekend her temperature did go up to 37.9 but didn't reach the critical 38 hospital visit luckily. Mum is on maintenance penicillin and will continue to do so while she is on treatment.
The Consultant said that if the PP levels continued to drop over the next couple of months, she should be able to stop treatment at six months and then revert back to three monthly check ups. I'm hoping this will be the case for mum. At this rate her PP levels could drop under mine which were 7.6 at my last appointment. (I am seen by the same Consultant)
We go back to see the breast Consultant on the 24 June and hoping that mums lump will have decreased in size with taking the Cyclo and Letrazole together. Mum is very strong and says she doesn't dwell on having Myeloma and breast cancer. I think it's because she is 87 and realises that she is lucky to have reached that age as we lost my dad to cancer at 70 and my sister to breast cancer in her 40's.
Eve, I still don't know about taking Bisphosphonates. I will be talking to my Doc in a couple of weeks time. I already have a lot of stomach problems and certainly don't want to make that worse. I still have pain from my healed fracture though and obviously I don't want any more fractures. It's all a bit of a worry as I have osteo arthritis as well.
Jill, I hope your mum continues to do well on her treatment. It must be hard to not feel ill with the Myeloma and then to have to have meds which make you feel poorly. Luckily my mum doesn't seem to be suffering too much on her treatment. I know if she was taking Thalidomide like your mum, things could be different. There may come a time when she has to take it, but for the time being it looks like she doesn't need it which is good news. She's not getting out much at the moment as she does get out of breath a bit, but is content to potter about indoors. Hopefully in a couple of months time if she is able to stop meds I'll be able to take her out a but more.
San, what treatment is your mum on? Is she taking Thalidomide as well as Cyclo and Dex? She is lucky to still have your dad helping. My mum knows that if she is feeling too ill I will always go and stay to look after her. I speak with her about three times a day to make sure she is ok, and usually see her a couple of times a week. I also have a couple of nieces who live locally to mum, so there's always someone around. Mum does have a heart issue as well and in fact we spent the afternoon at A & E last week as her heart rate was elevated. Probably not helped by all the extra weight she is putting on with the steroids. Hope your mum keeps well.
Take care everyone.
Love Sandie x
Hi Jan
I have just read your profile. Sounds awful what happened to you when your three vertebrae collapsed overnight. How frightening to know this can happen when sleeping. I can somewhat sympathise as I had a wedge fracture occur after Christmas. I was doing a lot of coughing although I think I had the weakness there for several years, as every year when I'm just doing gentle gardening, my back ends up really hurting. I also see the same Haemo as my mum (my PP levels started at 3.9 a couple of years ago, and are now 7.6. Low I know, but still increasing even so). Because of mum, they did an MRI scan of my spine and thankfully it was nothing to do with Myeloma. I was then tested for Osteoporosis and although I don't have that yet, I am Osteopenic and not far away from having Osteoporosis. The Haemo Consultant said they would probably put me on Bisphosphonates which I am not keen on because of the risk of Osteo Cronosis of the jaw. Rare I know but my jaw is not good to start off with. Although my fracture is healed I still have the same pain when bending over for any period of time. Have they ever considered doing Kyphoplasty for your collapsed vertebrae? Are you on Bisphosphonates for your bones? It looks like you are having a period without treatment which is great news for you, and although your Kappa Light Chains are increasing, I hope you won't need further courses of treatment for quite a while. Sorry about the American thing. It was just the spelling of mum to mom which threw me.:-/
Love Sandiex
Hi Vicki and Colin. Thanks for your kind wishes. Hoping that next time it won't be such a bad experience for my mum. We will be prepared and I will stay over this time. I couldn't last time as I was fighting a cold virus and the last thing mum needs is a cold. Thankfully she hasn't had one for over four years!! I hope Colin is doing well.
Love Sandiex
Thanks Jo.
From what I have been told the Zometa should get better as time goes on. I'm hoping the next dose won't make mum so ill, and I think if she is still anaemic they will also give her some blood next time. Hope you are doing well.
Love Sandie x
Thanks Jan.
It's useful feedback to give my mum. As long as she knows that the side effects she is experiencing are normal she will be able to cope. She only really had one weepy day last week whilst feeling poorly and then she bucked up after three/four days. The days pass so quickly and seem to be full of what and when to take her tablets (she has lots of others on top of the cancer treatments), and before you know it, it is time to take her Cyclo and DEX again. Hopefully she will be ok Monday/Tues/Wednesday, so she has to make the most of these days. I've just spoken with her and she thought today would be her 'energy' day, but she feels tired. Probably did too much yesterday. I think she forgets that she is 87 and has MM plus breast cancer. Side effects of MM are tiredness anyway, and on top of that a lot of her other meds like co-codamol make you tired too. I've told her just take each day as it comes and if she feels tired have a nap and rest up. I'm wondering if mum is the oldest person on this site with MM?.
I guess she's very lucky that she was diagnosed late in life. The breast cancer was only diagnosed in March.
Tomorrow I'll take her shopping, and then she'll have a couple of down days again. It's interesting to note what you have said about the steroids so perhaps that explains her low mood. I'll wait to see what happens this week. Several people have remarked about the side effects of the Zometa infusion not being so bad as time goes on, so I'm hoping that the second dose may not affect her so badly.
Mum does try to increase her fluids at the time of taking chemo as suggested, and I think this has been helping to stop her feeling so sicky. along with Domperidone. Her Consultant did say 7-8 mugs of fluid a day would be ok. I know others have said she should be drinking more, however as her heart is not brilliant I think too much fluid would put a strain on her heart. As it is, she is on a water tablet and always seems to be expelling a lot of fluid.
I think the DEX is helping mums mobility, and it will probably hit her with a bang when she has to stop. Already the steroids have caused weight gain even though mum isn't eating as much. The plus side is that her face is nice and plumped out so I've told her that actually she looks less lined which is a plus (although I have to say that at 87 she has very nice skin normally). I've noted what you said about being out of breath and being anaemic. I know at mums last consultation the doctor said she was anaemic and may need bloods the next time. We'll mention the breathlessness and see what he says. I'm hoping all the chemo and steroids are not having an adverse effect on mums heart.
I hope your son is doing well now and you also. Are you still on the CTD regime and have you had any period of remission since starting your treatment three years ago?
I stated in my last post that mum may be put on Thalidomide on her next course, and that the Consultant had said she would have to have a daily injection of Warfarin. I got this wrong, as mum told me he said Heparin…She already takes aspirin to keep her blood thinner. She was doing this even before she was diagnosed with MM. I've read up about taking Thalidomide and there is an increased chance of blood clots. As mum is overweight and has two heart murmurs already, I guess she would need to have something stronger to prevent the chance of a blood clot. I am hoping that next time we go to see the Consultant, her PP levels may have gone down a little or at least stayed the same, however I'm prepared for him saying that she will have to go on Thalidomide as well:-(. I think he decided to just start on Cyclo on its own in the first instance, because of mums age and health, but as her PP level had still increased last time, he decided to add in DEX. Do you have to have an injection daily using Thalidomide or is it because of mums other health issues that she will have to have this? I hope with summer coming you will be less tired. I've noted your spelling of mom instead of mum, so are you American? Weather is just starting to improve in UK so hoping to be able to take mum out on some trips over the summer months. Give her something to look forward to.
Love Sandiex
Hi Jo
So glad you have recovered from your bout of pneumonia. God bless Penicillin. What would we do without it. When mum got her sepsis she was resistant to two types of ant. but IV Amoxicillin did the trick.
Hope your treatment continues to work magic. Great that your PP's are 4!
Love Sandiex
Hi Mavis
So glad to hear you are in remission now. You deserve a good period of time, and I hope you get to go on your holiday.
Love Sandiex
Hi Dai
Sorry to hear about Zometa flu and hope you will soon feel better. My mum had her first infusion on Monday, along with her normal Cyclo, DEX, and a breast cancer medication. She felt great on Tuesday (doc said she would!) but started to feel unwell yesterday and had really bad pains in her back going through to her chest. Trouble is she had the shoulder/back pain before Zometa, but I think it's probably just making everything worse. Temperature is a little high and she hasn't even put her make-up on today which is a sure sign that my mum is feeling really unwell:-( . Doc did warn her she would 'dip' on days two and three, but didn't really say that she could feel really unwell. We were given an information sheet on Zometa and DEX, and of course both can give side effects. Having to keep away from mum as I'm fighting a virus, but next month when she has her infusion I'll go and stay as we will know what to expect (or not hopefully). Mum is anaemic as well and next month may have to have blood transfusion. I think poor mum was just overloaded with too many drugs on Monday. I know they're all given to help the MM, but having to cope with side effects is really hard especially at 87.
Princess Alexandra Hospital in Harlow, Essex is very good treatment wise. When mum was having her infusion they kept offering us both tea, and then came around with sandwiches, crisps and biscuits:-) Nurses and doctors are all lovely.
All hospitals are different but they should have given you a fact sheet.
Keep well.
Love Sandiex
Hi Tom
Sorry to hear you've been poorly, but glad you're on the mend now. Tried to get my other half to get a onesie, but he refuses, mind you he doesn't wear jammies either;-). Let's hope we get some warm sun soon as I'm sure all this cold weather isn't helping everyone on the board complaining about chest infections. Since my mums sepsis and hospital stay, she is now on 250mg Penicillin twice a day. Seems to be keeping infection at bay. Am wondering why others aren't being put on long term anti. whilst on chemo?
Keep happy on the vodka:-)
Lots of love Sandie x
Hi Jill
Sorry to hear that your mum has had to have another transfusion, and I hope she is feeling better now, and wish her well with this next round of treatment. Like your mum, my mum isn't getting out very much at the moment and whilst too may hospital appointments make her fed up, I don't think she really minds as everyone is so nice. My mum's not averse to a nice young male doctor either, even though she's 87;-). The breast cancer is a bit of a worry at the moment and since having the biopsy her breast is hurting and I think we may need some advice from the BC nurse. I'm just hoping that they haven't made anything worse by taking the biopsies as she wasn't really aware of the lump before they did that and she certainly didn't have a 2nd smaller one. Just to add to her long list of meds. we collect some additional ones to work against the BC on top of the chemo that she is already taking. I think now I will really need to make that pill chart!!
Love to you both.
Sandiex