[sandie58Participant]

Hello everyone. Wondered if anyone could let me know what effects they had from Zometa infusion. Mum had her first one on the 15 April, along with her Cyclo, DEX (1st time used), plus meds for breast cancer. She was ok the next day and for three quarters of the third day and then started to feel ill with a vengence. Lots of pain in her bones and just feeling very ill. I have read about 'Zometa flu', but she didn't really feel like she had flu. This lasted for about three days. This week she is just back on her usual Cyclo/DEX/BC drug and felt good on Monday/Tuesday/Wednesday, but feeling weak and tired yesterday (also depressed and weepy), and today feels the same. Also she told me she feels not really with it. I seem to remember reading about confusion with one of the drugs. Would this also cause the depression/feeling weepy? We were warned about a couple of low days so I'm hoping she feels better tomorrow. It's a good job the Zometa is only once a month. She said she can cope with the feeling ill if she knows it will only last three days and next time around we will be prepared and I will stay over to look after her.
Another thing that I would be grateful for advice on is that if the DEX and Cyclo don't bring the PP levels down next time, mum will have to add in Thalidomide. The Doc said this would mean having to have an injection of Warfarin in her stomach every day to prevent blood clots which she isn't looking forward to. (She does also have a couple of heart murmurs and can get increased heart rates so the last thing she would need is a blood clot:-( )Mum lives on her own and I'm sure the district nurse would come in, but it's a bit of a tie to have this every day. Perhaps I could be shown how to do it although I don't relish the idea of giving an injection to mum.
Taking the DEX in general is making mum a bit more mobile with her arthritis which is a good thing, although I think it has already put some weight on and that is with her not eating as much. Although she doesn't feel too sicky with the Domperidone, her stomach is never really quite right and she doesn't have that much of an appetite. The other thing she has noticed is that when walking she is getting a bit 'puffed out', which she didn't have before starting to take all these meds. Anyone else noticed this? I know mum is 87 and generally not very fit as she isn't very mobile, and she is quite big for her height. It's difficult though to exercise when you are in pain from arthritis so that doesn't help I know.:-/
Any advice would be appreciated.
Love Sandiex

[BADGERParticipant]

hI Sandie

sorry I cannot help with the Zometa as I dont have it but some people have reported flu like sysmptoms when they first get it but i think they settle down after a while
Love Jox

[VickiParticipant]

Hi sandie

Sorry cant help with the zometa query but hope your mum is feeling better soooon 🙂

Vicki and Colin x

[janwParticipant]

Hi Sandra

Have a look under the side effects section on this site, because there is a recent post under the heading of Zometa flu with 33 contributions relating to this issue which you and your mom should find informative and useful.

On my initial Zometa infusion, I certainly felt ill several days later with increased bone pain, fever and generally feeling unwell. However, further infusions have not caused so much difficultly although I can still feel tired for a few days after the treatment. One nurse suggested I increase my liquid intake a few days before treatment and a few days afterwards, which I have tried and it does seem to work.

The dex will relieve your mom's arthritis, but when your mom stops the dex she might find her arthritis aches a little more or becomes stiffer as her body gets used to coming off steroids. The steroids can also cause your emotions to fluctuate excessively as well as your energy levels. No doubt, you mom is experiencing a range of emotions taking the dex. My son was on/off steroids for many years with his asthma when he was young and he certainly used to become hyperactive when he was taking the drugs and then depressed for a few days after stopping the drugs. He used to swim for years for a local swimming club, but whilst on steroids he was banned from competing in competitions for two weeks. The drugs used to make him feel happier and swim faster! I've never seen anyone kick their legs as quick as him whilst swimming and taking steroids.

I'm not sure what causes the feelings of breathlessness, but during my cycles 3 and 4, I struggled to walk up the stairs without huffing and puffing. I couldn't walk for more than a few minutes without being short of breath and needed a wheelchair in the hospital to cover the distances to the oncology wards. I did become anaemic during cycle 4 which didn't help with shortness of breath. After three blood transfusions at the end of cycle 4, my energy levels and breathing certainly improved. Luckily most of these side effects finish after the short term drugs for the myeloma treatment. Although fatigue and bone is still a big issue for me and it's been three years since the start of my CTD.

All the best for your mom. She sounds as though she is coping well at aged 87 with all of the drugs she is having to take.

Jan x

[sandie58Participant]

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

[sandie58Participant]

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

[sandie58Participant]

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

[sandie58Participant]

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

[eveParticipant]

Hi Sandiex

Your mum should only get zometa side effects for a short while and it does work wonders with bones for a short period. Why Warfarin and not Claxane you could do them for mum they will do the same job but cost more, I would consider Claxane to be very important as chemo side effects are blood clots!!!,

Sandiex Osteo Cronosis of the jaw is rare ,only effects 1 percent and is connected with teeth removed .if my doctor adviced me to take Bisphosponates ,I would as it helps prevent osteoporosis.
I think you mum is a star living on her own and managing Myeloma plus breast cancer,it must be a bit scare of a night for her,as the medication tends to keep people awake,we use to often be up,making tea.so to manage by herself she's a star in my book.Eve

[jillsParticipant]

Hi Sandie,
My Mum had Thalidomide during her first round of treatment and it made her quite drowsy – they say it should be taken at night. It did work well to lower the MM indicators, she didn't have any blood thinners with it but she doesn't have heart issues like your Mum. She has also had dex several times and it certainly does make you feel low and weepy a couple of days later, plus increases confusion. Watch for that with the thalidomide too – Mum's doctor did lower her dose of thalidomide as she was a bit groggy on it, and I understand that research has shown that lower doses can be just as effective. She didn't seem to have any effects from the Zometa and has been having it every month for about a year.
I also worry about my Mum taking all these medicines at 84, to be honest I would not want to spend most of my time feeling under the weather due to medicines at her age. She has had very little symptoms from MM over the last five years (which I know is because it is being controlled) but all the health issues have been down to the treatment. This is a difficult balance in elderly patients as we all still need to have some quality of life even in our 80's!
Take care,
Jill x

[sanParticipant]

Hello, i know what you mean Jill and Sandie, my mum is 76 and came home from hospital today hurrah!! but gosh the tablets!! i have spen't the afternoon helping her sort them, and as you say the treatment makes you feel so poorly but she needs them,Mum has Dad helping her with carers now also, i did feel for your Mum Sandie living on her own she is a star as you are helping her, may all of our Mum's keep well and enjoy life day to day San xxxx

[janwParticipant]

Hi Sandie

I think your mom at aged 87 is coping really well with taking her drugs and still managing to look after herself with your help. I know I would have struggled without my husband's help, especially dealing with the side effects of fatigue and bone pain. My husband had to take over all of the cooking, cleaning, washing, etc because I felt too exhausted and weak.

I was offered kyphoplasty for the collapsed vertebra but was worried about the possibility of cement leakage especially three years ago when this operation was a relatively new treatment and I didn't feel up to it before or after SCT.

I don't know why I have always called my "mom" rather than "mum" – I've never thought about it before you mentioned it on your message!

Jan x

[sandie58Participant]

>:-( 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

[sandie58Participant]

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

[janwParticipant]

Hi Sandie

I was pleased to read your comments about your mom's progress. Let's hope she will be able to stop treatment over the next few months and have some time to recover from the side effects of the drugs and get used to undertaking her usual daily activities without worrying about the constant treatment.

Like you, for months after the damage to my spine I could not lift any items without severe pain including bath towels, hairdryer, magazines, pillows, etc. It took me over two years before I could climb into the bath and sit down without severe back pain. The curve in my upper spine still makes it difficult to find comfortable seats which support the spine without increasing the back pain. I sit in bed with four soft pillows supporting my back to watch TV or use my laptop. I can't sit at my computer desk without back pain. The monthly Zometa has certainly helped reduce my back pain, which I hope will continue to improve with ongoing treatment.

The more I rest, the more the bone pain is controlled and reduced. However, the strong pain killers greatly assist me with my mobility. My family have been marvellous, especially my husband who now carries out most of the household chores which involve heavy lifting such as carrying wet washing, vacuuming, gardening, moving furniture to clean, etc. I shop on line and use a shopping trolley if buying goods at the stores.

Let me know what your doctor suggests to improve your pain.
Take care.
Love Jan x

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