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zometa reactions

31 REPLIES 31
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Re: zometa reactions

Thanks everyone for info and support xxx
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Re: zometa reactions

Oh FF and moijan
Thanks for that info ..everytime I forget something or get a headache from being on this site too much ...I convince myself I got it in the brain !!!
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Re: zometa reactions

Maldives, the forum is here for us so that if we need to 'go n a bit' then its really ok....you havent tho...we all have periods when we feel scared and our bodies arent doing ehat we want!

 

you are doing well, and as Carolyn had the same thing thats lovely...you both have a buddy to bounce off on who knows exactly what you are going throughxxx

 

FF...yes, my onc said 'your type of cancer dorsnt usually go yo the brain' which helps a bitxx

however, we always wonderxx

 

hugs,

 

Moijan💚💚💚

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Re: zometa reactions

Maldives, Just a tidbit of info. I don't know what kind of BC you have, but if it's ER+, PR-, and HER2 - it is the least likely to go to the brain! FF

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Re: zometa reactions

Hi moijan yes i did thanks. Really usefull info.
Mills and some of the others are having exactly the same symptons in the jaw as me. Its getting painful now but i have settled a little as i thought it was brain mets. Still could be but i think its more likely the jaw thing.should find out next week mri and i see the max fax on 23rd. Got big bone scan and a liver mri too. Should have all the answers by end next week. My tumer markers are jumping up but im well in myself apart from jaw. Onc isnt worried so i suppose i shouldnt worry either. Thanks for the support. I know i go on a bit but ive bottled it up since i was diognosed in 2014. Coming up 3ys in may. Not done bad had 2 femur nails put in and had 2 rounds of chemo. Not bad considering the cancer is in all my bones. Thanjs again xx
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Re: zometa reactions

Hi Maldives, wasnt sure if youd seen my pm?

 

i scrolled right thru here, some useful tipsxx

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Re: zometa reactions

Mills are you still having the zometa or have they stopped it now. Are you having anything to replace it if the have? Third night no sleep. Dont know if its pain or worry keeping me awake. Even sleeping tablets not helping. its a Lonley time at night. Seems to go on forever. Xx
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Re: zometa reactions

Hi mills sorry to hear you are suffering. Ive been on zometa roughly same time as you in between chemo ect. Im suffering same symptons as you exactly. Ive read a number of posts on ghis jaw thing and they all say the same. Ive not seen the max fax yet but i dont hold out much hope from what ive read its.put up and shut up. I do think we should be warned there is a high risk of this bone disease. Although id rather have that than be told its brain mets. Thats what im scared of.
How are you finding the opiets? Dont be afraid to increase them if they are not on top of the pain. Mine is managed by the mcmillian nurses. I just ring them if i need to increase dosage. I never just do it as they are so strong. I hope the pain relief gets on top of it. Sue xx
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Re: zometa reactions

Bumping up for Maldives

 

Hi Maldives....have just read all the posts from the beginning....yyou may find it helpful yo do that too xx

 

Moijan💚💚💚

 

 

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Re: zometa reactions

Hi everyone

http://www.cancerhelp.org.uk/trials/trials/trial.asp?trialno=9693

on the CRUK site gives the detail of the BISMARK trial which Kate mentioned some posts back.

Best wishes

Ann

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Re: zometa reactions

Hi Mills

I've noticed over the past few weeks that my chin is slightly numb and I'm now wondering whether it's down to the Zometa. I was on pamidronate for 3.5 years but it stopped working for me at the beginning of this year and so have switched to Zometa.

I had my treatment today but I always drink loads of water and must admit that I haven't had any flu like symptoms since the first time I had pamidronate and was told that I really should drink loads of water during and after the infusion.

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Re: zometa reactions

Hi Mills, sorry to read you had a bad night. Yes I know a couple of ladies (from a mets support group) who have had similar problems (both bisphosphonate users) but unfortunately they don't use these forums, they use strong pain killers. I also know another 2 ladies who had some rads when they both had numb chins, it felt as though they'd just been to the dentist, difficult to drink a cup of tea etc. They were also bisphosphonate users. The rads helped a little. Belinda...x.x.x

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Re: zometa reactions

I have Zometa with my chemo every 3 weeks

I get teeth ache for a few days and flu ache the same.

I don't know how long I will have it for.

gill

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Re: zometa reactions

I have been having Zometa every three weeks for nearly a year (recommended by Marsden). I get the usual flu symptoms before and after infusion. Over the past few months I have developed damage to the nerves in my face. Initially it was tingling then numbness, now its pain. The pain affects my sinuses, teeth, ears and behind my ears running around the back of my head. Sometines its manageable (taking gabotentin as its side effect is relief of nerve pain) recently it has become so bad I have been prescribes opiates. I saw a maxilo-facial consultant wbo was very honest and told me there was nothing her could do, the nerve damage was permenant and irreversable. Has anyone had the same problems? Anyone got any suggestions? Would love to hear from you. Sorry to be so negative but have just had another bad night
Mills xx

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Re: zometa reactions

Dear Claire

Thanks very much for this - I will have a good look at that thread.

All the best

Dilys
xxxx

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Re: zometa reactions

Dilys, In my tread DRUG CUTS CHANCE OF A RELAPSE 'BY A THIRD' i have mentioned some research by professor Michael Gnant which may be of interest to you.I am trying to get zometa prescribed for my sister for primary breast cancer with some bone loss to spine( shown on dexa scan) but he is reluctant to prescribe it because research is ongoing and because of side effect of jaw necrosis. perhaps your oncologist is more forward thinking and doesn't sit on the fence waiting like so many of them.There is another lady on the thread in Ireland ,being treated with zometa for primary breast cancer and bone loss, but her oncologist is American
best wishes claire x

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Re: zometa reactions

lino1
I felt after my first chemos of FEC and then taxotere that I would never have chemo again. However, when i developed secondaries in my bones and lungs the onc said I would feel better on chemo than off it. I then changed my mind about chemo as my breathing was so bad I wanted some relief and knew if I didn't have treatment I would be dead within a matter of months. That was 2 years ago and although I've spent more time on chemo than off, the side effects have never been as bad as the first ones and it has definately given me a much better quality of life and I do enjoy my life even if it is limited.
It is hard to know what the best course of action is for anybody and it has to be the decision that you feel the most comfortable with. If you don't want any further chemos then you shouldn't be pushed into it but at the same time you need to explore all possibilities and get as much info as you can eiher way so you can make an informed decision about whether to continue with treatment or not.
I hope you get the support and info you need to help you make the right decision for you.
All the best
Kate

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Re: zometa reactions

Hallo Kate

Haven't seen you on here for ages. You ok my love? I am. I don't think I have secondaries - was just slightly spooked by all this, when I just thought I had thinning bones. Which is the truth I think and hope.

Have a new job interview tomorrow. Now that IS scary.

Take care dear Kate and lovely to hear from you.

Much love

Dilys
xxxx

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Re: zometa reactions

Dilys - there is a trial where zometa is being used 3 monthly to see if it prevents bony secondaries - could be the BISMARK trial but not sure of correct name. As far as I'm aware, there is research or even evidence that zometa can prevent secondaries but not sure where I got that from. Hopefully someone more knowledgeable than me can tell you that or look at CRUK site.
Kate

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Re: zometa reactions

Hey thanks Penny. Not given to panic but had a moment when I read these posts! Let's hope it is also good at preventing secondaries.

Much love

Dilys
xxxx

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Re: zometa reactions

I've been on Zometa and find that drinking lots of water during and after treatment works for me. I was on Pamidronate for 3.5 years and was switched to Zometa this year as pamidronate had stopped working for me. The Sister in the chemo clinic told me to drink plenty of water during and after treatment as I had the flu like symptoms after my first Pamidronate but no one told me to drink plenty of fluids. I've not experienced those symptoms since.

Zometa is used as a bone strengthener for those of us with secondaries.

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Re: zometa reactions

Zometa is also used as a once-a-year treatment for postmenopausal women with osteoporosis.

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Re: zometa reactions

Hey Dilys,
Don't worry!
Zometa is used for thinning bones alone. I also have a friend whose onc, recommended that she take it prophylactically to help prevent BC recurrence . She is going to have it every 6 months. Wish that I had been offered that.
Penny

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Re: zometa reactions

Hi there

I have had one lot of Zometa but as far as I know it is just against thinning bones? Knocked me flat for a day but that was all. Second dose due in December. Noone has mentioned secondaries..... Eek!

Love

Dilys

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Re: zometa reactions

Oh yes its years.....

Secondaries have been 3 and a half and I'm still riding my motorbike!!!!!
(which I learn't to ride 2 years ago).
I am one of the lucky ones who has always been well with just the chemo bringing me to my knees
but luckily I soon got over that.

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Re: zometa reactions

It is good to see you say 'over the years ' bikinggirl - I like the sound of 'years'

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Re: zometa reactions

Dear Lino1,
I am so sorry that you are here too. I assume that since you are receiving Zometa that you have secondaries in your bones. I was diagnosed with this too back in April of this year.

I had my first Zometa in May and was ready to die! I was in so much pain and discomfort, and did not want to have what time I had left feeling like this. I now have the Zometa every 4 weeks, and don't even notice it. The only thing that I feel is some discomfort ( kind of burning feeling) in my lower back and hips a few days before I am due to have the next one.

A week after I had the Zometa, I started weekly Taxol and Avastin. Although it is not fun, it is way more bearable than the chemo that I endured with my primary (Taxotere, Adriamycin and Cyclophosphamide). I had another scan after 11 rounds , and the scan showed excellent improvement! I am now having the chemo weekly for 5 weeks and then a 1 week break for at least a year. Overall I feel much better, and am more hopeful for the future. Of course, it has not helped that last week I lost all my savings that were in a bank in the Isle of Man - owned by Iceland!! But such is life...

I was certainly sceptical that chemo would work, but it does seem to be doing something! It may be your best option. I always tried to eat healthy and took supplements suggested by my naturopath who is also a medical doctor. I exercised,never smoked, drank or took drugs. I was the poster child for what you were supposed to do to stay healthy. But my Mum had premenopausal breast cancer and I suppose the genetic factor was just too strong.

I feel that I owe it to myself and my family to try and stay here as long as possible. I love my life. Maybe it is worth exploring the chemo option again, before completely deciding not to have it.
I wish you all the best,
Penny

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Re: zometa reactions

Hi mrs blue and Lino

We always advise that you to check with your medical team before taking any supplements as they can cause adverse reactions.

You can find more information on this site in our booklet on secondary breast cancer (page 24)

http://beta.breastcancercare.org.uk/upload/pdf/sbc_sept_2007_web_final_0.pdf

and more information on complementary therapies which many people find helpful at

http://beta.breastcancercare.org.uk/server.php?show=nav.429

Hope this helps

Ann

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Re: zometa reactions

Hi Lino, welcome here but sorry you have to be here 🙂 I was on Zometa for 6 months and I had quite bad bone pain from a hip met, then almost suddenly it got much better and my next bone scan was stable. I really hope this happens to you too.
Regarding herbal treatments, it depends which herbs - useful information on CancerHelp's website, and maybe on BCC as well (moderator could you post a link please?) some are not recommended for various reasons.
Also you should be getting help with pain as needed, don't be reluctant to ask, it's important for those of us living with secondaries.

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Re: zometa reactions

Hi there,

Drinking lots of water before during and after zometa will help with the side effects, hopefuly next time they wont be as bad.

What therapies have you looked at?
I have done many over the years and all help but I do have 'drugs' as well.

I take Paw paw combined with a very healthy eating regine.
Yoga, relaxation and a few other things....

apart from the bone where else do you have spread and what treatments have you already tried?

Bikinggirl

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Re: zometa reactions

Hi there..I think a lot of us get side effects with our first infusion..I did..normally after one or a few infusions it does get better...the first infusion is shaking things up a bit. I was diagnosed with stage 4 bone mets from the onset, in 2003. I had some good years on hormonal treatment but I'm now on my first chemo, Xeloda. It's been surprisingly easy, easier to tolerate than Arimidex. I have an excellent quality of life. I wondered if you'd already tried Xeloda or whether it might be a treatment option? Best Wishes, Belinda.

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zometa reactions

I have recently been diagnosed with terminal secondary breast cancer. I have chosen not to have chemo ( I had it for 6 months after original diagnosis and lost faith in it) I had one IV of Zometa and had awful side effects, can anyone else relate to this. I had flu like symptoms for nearly a week then another 2 weeks of bad bone pain. Does anyone take herbal therapies ?