your experience with Zometa

jessamine

hi- I know this info is somewhere in here already but I just can't find it, so....  I'm going in for my first Zometa infusion (for recurrence prevention) this week and was wondering if people would be willing to share their experiences? I know a lot of people have a "flu-like" reaction the first time- specifics would be really helpful, to give me an idea of what to expect and how to prepare. Much appreciated- I haven't been around much for a while now, but it's always good to know this (you) are all out here....

sueUK

Hi Jess,

First a warning from me...I did have rather an extreme reaction to zometa and from what I later found out on these boards, my experience is not necessarily the norm...I dont want to scare the pants off you but I do want to be honest!

I have been on zometa for 7 months now, I have the infusion every 3 weeks. The first time, I was fine all evening, then during the night the side-effects began - with me it was a lot of pain, yes I suppose I would describe it as flu type pain, but really it did become quite unbearable. But my real problem was that I also had vomiting aswell...even when there was nothing left, it went on and I felt pretty ill all during the next day and started to pick up on the following evening (one evening after the treatment).

I very quickly came on here for advice and the main things are to drink plenty of water on the day of the treatment and after. Also, where the treatment is normally given over 15 minutes, it was suggested that taking it over 30 minutes would help. I did both of those things and they did help enormously...after that I only had a couple of occasions of aches and some vomiting, but most times no side-effects at all.

That was until a couple of treatments ago when in error they gave me the treatment over 15 minutes again. Oh my goodness, that did lead to trouble, but strangely..not that night but the night after. I started vomiting at about 2am and just couldnt stop..all night and all day, I felt SO ill and eventually struggled to call on a nurse to come to my home to give me a jab to stop the retching...there really wasnt anything left to throw up (sorry), and the pain caused by trying was dreadful. Once the nurse had been I did stop retching, but I was too afraid for a while to take any of my pain meds so continued to feel quite poorly for a few hours. By this time of course I had gone about 36 hours without any of my usual meds...horrible! However, once I did start taking them again I made a speedy recovery. But since then I make double sure that they put the zometa in over a longer period...I now opt for 45 minutes to be on the super safe side. In that case, and along with the water drinking I have no side effects at all. My consultant has since told me that he has some ladies who take it over an hour and even two, so it all depends I suppose on how each individual can tolerate the drug. I will say that I didnt come across anyone else on here that had suffered the vomiting like I did, but many did decsribe the flu symptoms. I dont know whether they only suffered on the first occasion or every time...for me obviously I have to take the avoidance actions every time.

I suppose really you will need to go with the flow, prepared for what could happen, and dont be afraid if it does work out uncomfortable for you. I was quite scared as I hadnt been warned about any of that, and I was not as sensible as you to come along and ask what I might expect. Be assurred that if you do suffer any of the side-effects, that you will be able to prevent them next time by extending the time that you take the zometa over. For your first time, remember to drink plenty of water during the day before treatment and after - I didnt even know about that, and in any case, this will help hydrate your veins and make putting the canula in a lot easier too.

I do hope I havent frightened you, I guess this is worst case scenario and I hope that you wont suffer anywhere near to the extend that I did!

I notice that you have already done chemo, so you may have suffered plenty already and be more prepared than I was. I am only heading for chemo now..my first round is on the 22nd June...sigh!  Thats why I have come back to the boards after a bit of a break...to be more prepared this time! It IS great to know these lovely ladies are here to help with advice and support isnt it!

On the up-side, the zometa did help enormously in bringing about healing to my bones after radiation, and help with pain relief also.

Good luck to you, I wish you a calm and trouble free experience with zometa!

Hugs, Sue x  

CoolBreeze

I had zometa, no problems.  Had a weird taste and smell sensation as it was infused.  Went home, got some aches and pains and fluey feelings.  Was fine the next day.

voraciousreader

I took Tylenol and drank lots of water before my first infusion. Exactly a day later I got terrible chills and stiffness for a few hours and then I was fine. My second infusion was fine. No side effects at all. In 3 weeks I will have my third infusion, expect it to go well. Good luck to you!

jessamine

Thank you all very much!! You are right, Sue, that I had chemo before- which I wasn't nearly this well prepared for- and I always had to get it done very slowly. So I'll just continue with that, lay in bland foods and anti-nausea drugs (I think I still have some) and hope for the best...

ebann

For my Zometa the first couple of times I got flu like symptoms. pains, aches, stomach ache, & chills. I was down all weekend. Then after a couple of more they tapered off. but I also was told to take Claratian D and Aleve before I get it and I have been fine you take it for 3 days.

Mazy1959

Hi Jess, I hope u have no probs with Zometa. I am more tired than usual the day I take but other than that I have never had a side effect from Zometa. HUgs, Mazy

jessamine

I hope I don't have a hard time. I'm really not looking forward to this. I was pretty happy to put chemo behind me, and this.... well I'll get through it. But I'm apprehensive about tomorrow. Thanks all.

jessamine

well I did it! And I'm going to talk about so future searchers can find this and have one more story to go from. I got the infusion (over about 30 minutes) at about 4 pm- felt pretty normal for the rest of the day, but fell asleep super early and really hard.

 Well wait, I'll back up- I asked my dr about side effects- he said most are caused by calcium depletion- he said the zometa sucks the calcium out of everywhere in your body except the bones and moves it into the bones really fast, and the sudden depletion causes muscle cramping, which causes the pain and vomiting. He said calcium supplementation can prevent this and to get some tums and take 1000 mg at a time, twice that night and twice the next day. I got the tums but decided to see if I could just do calcium supplements because if I'm going to break my own rules and have a bunch of stuff that's bad for me (sucrose, artificial color and flavor) I'd rather have a cookie. So when I got home I took 1000 mg calcium and again before bed. 

In the morning I woke up in pain, mostly in my stomach muscles and thighs. Even though it was the muscles and not the bones it felt a lot like the pain I used to get from the neupogen during chemo. I took 1000 mg calcium. When I was still in pain 2 hours later I took a tums (another 1000). And later in the day I took another, and did one more round of pills, for 4000 mg total. He warned that too much calcium could cause constipation but I didn't have a problem- either because I was taking pills that also had mag 1/2 the time or because I really needed it I don't know. I was in pain all day- not terrible, but there. And I was really really wiped out. I slept a lot of the day and was bedridden all of it.

At night (around 11) I was lying in bed, in pain and miserable and suddenly my hands felt super hot and huge! Within 20 minutes I felt totally feverish- I checked and was at 100 degrees. I took 2 advil and an hour later I felt GREAT- peppy, hungry and pain and fever free. I ate, was happy, and then fell deeply asleep for 10 hours.

Now it is the next day and I feel ok. A tiny bit achy but not in pain, no fever. Definitely still run down- if I were trying to plan around work, I would want to have today off. But I feel like the worst is past. I didn't have any nausea or vomiting. I did drink A LOT of water over the last 3 days- gallons. It probably helped.

sueUK

Hi Jess, I was just checking in to see how you got on. Sorry that you had such pain, I understood every word you said...my that took me back! Hopefully it will be first time only, but as I told you...with me I have to take my precautions every time...longer infusion time and plenty of water in which I get NO side-effects at all.

Its interesting that you mention the calcium - that it might be a factor with the side-effects, I shall have to ask about that. From the outset I was given calcium supplements to take every day - its like a big fat chewable sweetie, and tastes like a love heart...do you have love hearts over there? lol! Im not sure what the dosage is on this one pill I take, I will have to check...but it certainly wasnt given to me in terms of reducing side-effects like the pain. However, if it could help I might just take two on the day of my infusion and the day after say....might be worth a try.

I only have one more treatment of zometa on its own as Im starting chemo on the 22nd June so I shall have it put in along with that cocktail...well, that will be for 6 shots anyway, then back to zometa on its own. I have to say that I am rather concerned how I am going to react to the chemo given the experience I have had with zometa!!!

Im very glad that you didnt have the nausea and vomiting though Jess - for me that was the very worst part of it all.

Good luck for next time and thank you for sharing your experience with us!

Hugs, Sue x   

jessamine

Oh I'm glad you saw this, Sue- I was thinking of pm-ing you about the calcium info I was given! I'm glad the SEs have gotten better for you in any case though. Good luck with chemo (other chemo)- there's nothing good to be said about chemo unfortunately, but at least you have plenty of practice drinking gallons of water, so you're ready! Also, you'll see this a million times on here, and won't think you can do it anyway but I just can't tell you how much exercise helped me with chemo SEs especially nausea. Even when all I could do was walk slowly for 20 minutes in a day, those days were 1/2 as bad as the ones I didn't. And, of course, most people do fine and work and run all over the place and go to the gym- so no need to think it'll be like that for you! But just in case... good luck. XO

sweetangel

Hi ladies, how are you all doing? TGIF..yess...

I have been reading about ZOMETA because I am deciding from taking BONEFOS to ZOMETA, for some reason I am thinking that BONEFOS is not doing a good job on my bone mets.  I asked my ONCO about her opinon to this and she said they have the same effect on the bones.  I am supposed to take the ZOMETA last May 31 but after reading information about the SE, I cancelled it because I don't want to get it 2 days before my CHEMO....I might have SE from chemo and Zometa infusion as well.

Anyway yesterday was my 4rth cycle of  chemo regimen (FEC).....2 more cycle and I am done....I am just not happy with the result of my bone scan.....seems like FEC is only working on my liver...my ONCO said she will get a second opinion on my bone scan result...she seems not convinced that the BONE SCAN result is right, because the blood work on my bones seems to go down from the previous one.  I am keeping my fingers crossed hoping she is right....or else these tumor is going to eat up all of me :-(.....it flares up like every part of my bones.....skull, neck, shoulder, hips, and every part of spine.....but makes me wonder I still have no pain from all of these....not even taking pain meds...... I hate this cancer......I am just so worried...

sueUK

Sweetangel, at last someone who is on the FEC regime...thats what Im going to be having later this month. How are you finding it...any useful info you can give me? That is for my bones too...so am a bit alarmed that you are finding it ineffective for your bones?! I dont have any soft tissue involvement yet, so I wonder why my onco has chosen FEC? I am in the UK and we certainly dont get the sort of choice of chemo that some of you appear to get in the US. We are just told...this is what we are going to do to you next! You can say yes or no of course, but there is no explanation about why one chemo regime is chosen over another. Also, I dont think my bone mets are showing up in my blood work, only on the scans. I had many bloods taken and regular xrays and all were clear so I was being treated for slipped discs for some time...sigh...until an MRI was done then all hell broke loose!

I am down for 6 treatments of FEC 3 weeks apart and plan to have my zometa given at the same time...I hope I can - I figure lets get all the side-effects done and dusted at the same time! I will be having CT scans half way through treatment to see if its being effective - if not, then I think my onco will change my cocktail. I have a chemo planning meeting in a couple of weeks, I guess I will find out more then. My sheet of questions is certainly getting longer and longer the more I read on these boards. Does anyone else get the sense that the health professionals dread such well-informed patients coming along with their long lists..lol! 'Oh no, she visits forums'....thats the feeling I get, but blow it, Ive learned a lot more on here than I have from them...about the real experiences of 'all this' anyway!

Anyway, hugs all round and a happy & SE free weekend to you all!

Sue x 

Rennasus

Ladies I just read on a study published in The Lancet Oncology about adding Zometa to reduce recurrence risk:

FRIDAY, June 3 (HealthDay News) -- Early stage breast cancer patients can see their chances of the cancer's return drop by 32 percent when the osteoporosis drug Zometa is added to regular hormone therapy for three years after surgery, Austrian researchers report.
Women undergoing hormone treatment for breast cancer are prone to develop osteoporosis, so they are usually given a bisphosphonate such as Zometa (zoledronic acid), to build bone strength. However, Zometa appears to have the additional benefit of reducing the risk of cancer recurrence, according to Dr. Otis Brawley, chief medical officer for the American Cancer Society.
"Aromatase inhibitors [like Arimidex] cause osteoporosis, and you must put a patient who is being put on an aromatase inhibitor on some type of osteoporosis preventive therapy," Brawley said. "This study says that putting a patient on Zometa may have even a bigger bang for the buck than the prevention of osteoporosis."
Although exactly how Zometa reduces the risk of recurrence isn't known, lead researcher Dr. Michael Gnant, a professor of surgery at the Medical University of Vienna, said he thinks "it prohibits dormant tumor cells in the bone marrow from 'waking up.'"
"Zometa actually hardens the bone and makes it more difficult for the cancer to actually implant," Brawley added.
The report was published in the June 4 online edition of The Lancet Oncology to coincide with the American Society of Clinical Oncology's annual meeting in Chicago, where the findings were to be presented Friday.
For the study, Gnant's team enrolled 1,803 premenopausal women with early-stage hormone-receptive breast cancer. The trial was funded by drug makers AstraZeneca and Novartis.
The women were randomly assigned to tamoxifen alone, tamoxifen plus Zometa, Arimidex (anastrozole) or Arimidex plus Zometa. Zometa infusions were given every six months during the three years of the trial.
The choice of hormone drugs is important, because while Arimidex is associated with a risk of developing osteoporosis, tamoxifen isn't. So women prescribed tamoxifen would not usually be given an osteoporosis drug, Brawley explained.
In 2009, after four years of follow-up, the researchers reported women receiving Zometa had a 36 percent reduction in the risk of a recurrence of breast cancer, compared with women not on the drug. There were also indications that Zometa extended overall survival, the researchers said.
The current report looks at more than five years of follow-up, which is more than two years after treatment with Zometa was stopped.
The researchers found that women receiving Zometa had substantially better disease-free survival (92 percent) than women receiving hormone therapy alone (88 percent). This is a 32 percent reduction in the risk of a recurrence of breast cancer among those who had received Zometa, they noted.
These results were seen among women taking either tamoxifen or Arimidex plus Zometa. However, overall survival was worse among women receiving Arimidex, they added.
The effect of Zometa was even more pronounced in women over 40, where the risk of the cancer's recurrence was cut by 42 percent.
In addition, Zometa was associated with a reduction in cancers developing in bone and other sites as well as breast cancer in the breast where cancer was found and in the unaffected breast, Gnant's group found.
The researchers added that Zometa was well-tolerated and side effects, which included joint pain, bone pain and fever, were relatively mild. There were also no cases of osteonecrosis of the jaw (death of bone in the jaw), which Zometa has been linked to when the drug is given for osteoporosis after major dental work, Brawley noted.
This study showed that "disease-free survival increased, it's not powered for overall survival," Brawley said. "There have been recent studies where disease-free survival was increased, but ultimately overall survival was not."
"This is something to consider," Brawley said. "I never change my practice based on one trial. But, I see very little harm in giving Zometa along with aromatase inhibitors. Many of the patients I take care of already get this anyway," he added. 

sueUK

Such an interesting article Rennasus, thank you for sharing. How I wish I had read this some years ago!

When my mets to the pelvic bone were found (last October) and zometa prescribed, the doc explained the life and death cycle of bone cells, and that tumours were the result of the process not behaving properly. The zometa encouraged them TO behave themselves and that was the reason given for this treatment being able to prevent a worsening of the condition, and even hopefully an improvement.

My tumour to the pelvic bone was scarily huge, but the radiotherapy along with the zometa have knocked it out and my bone shows signs of healing - I suspect zometa is responsible for the healing part. I do like to hear the word healing along with shrinking! Other smaller areas however have gotten larger, though still regarded as spots, so I will be having the chemo to address those. I do feel confident though, especially now having read this article, that zometa is well worth all the nasty side-effects that I experience if Im not very careful!

I hope everyone is doing okay with their treatments, its zometa again for me next week!

Hugs, Sue x

Mazy1959

Jess, I took 1200 mg calcium for over 3 yrs and suddenly one month my calcium was way too high. I just take multi vitamin and D3 now and my calcium is still okay. Onc said she will let me know when I need to start taking it again. Since I took the calcium ahead of time, maybe thats why I didnt and never did have problems other than tired the day I took it. Hugs, Mazy

DebInTN

For me:

First treatment - nothing.

Second treatment - Felt fine. Walked to my car and felt a little light-headed.  After about 2 1/2 hours I felt really drained and went home and went straight for the sofa.  Fell asleep.  When I woke up I felt fine.

Third and fourth - nothing.

Good luck!

cookiegal

flu like would be putting it mildly.....

My experience was worst flu ever with weird pain.

I could feel every breath in my bones.

I actually briefly fainted in the bathroom and woke up when I head my husband dialing 911...aparently my eyes were open and rolled back.

That being said, the worst of it lasted about 18 hours...I had it on Friday and made it to an event Sunday morning.

Have water in close reach...I was in too much discomfort to get up and get it. Also some snapple or something like that.... 

suzieq60

I had really bad chest pain  (in the sternum) after the first one. The onc got me to take a dexamethasone tablet and I was fine after that. Second tx - no problems at all - but I did ask for them to deliver it slowly.