Zometa

[Debbigbang]

My onocologyst had suggested zometa, bone strengthener. I do have 2 small bone leisions. From last CT scan are healing. She is giving me this for preventative and strengthening. Has anybody had this zometa? Thoughts? Side effects?

Thanks ❤🙏

Deb

[08Altima]

Hi Deb!

My mom has been receiving Zometa infusions over the last year. It is a great drug made to prevent pain and fractures in people with bone metastasis. I speak from experience with my mom and from working in a cancer hospital. Overall, people respond very well to it.

Like all good drugs, it does come with side effects. The ones that my mom experienced were body aches, nausea and a low grade fever the evening of the infusion. The side effects for her happened about 8-12 hours after administration and only lasted for 12-24 hours. Considering she only had to do this every 3-4 months, for her, it has been worth it. Her worst infusion was the first, as with many people who have experienced Zometa. It seemed to get easier and easier each time she went- I wish I could say the same for her chemo she is on now.

She found that drinking A TON of water the day before, the day of, and the day after helped tremendously with her side effects.

Claritin is another thing she found very helpful. She would take Claritin the day of administration as recommended by her doctor. She was not recommended to take any OTC anti-inflammatory drugs but the antihistamine reduces inflammation and really helped.

Last bit of advise- take it slow. My mom found that the slower the drip during the infusions, the less she felt nauseous. The first time she went her chair time was about 15 minutes. That was too fast for her. After that they slowed it each time and she found that about a half an hour was her sweet spot. Don’t be afraid to ask your nurse to make the drip as slow as allowable, especially for your first dose.

I hope your experience with Zometa is uneventful and beneficial. Wishing you (all of you) the very best as you continue your journey. May you all have a wonderful holiday season.

[Rubyjude]

Hi Deb. I have been on Zometa for over a year now, with an infusion every three months. Have had absolutely no side effects at all. The pain I had from mets in my spine and ribs has disappeared too. Hope you have a similar experience.

[Debbigbang in reply to Rubyjude]

Thank you !!! 🥰

Deb

[blms]

My doc really wanted me on zometa but I have problems with bisphosphonates . I am concerned about the jaw pain. Any of you had that?Bonnie

[Andersl in reply to blms]

Oh yes I had the jaw pain. Luckily once I stopped the drug it cleared up. My advice would be: stay alert to these symptoms. It's extremely painful.

I might also add, ask the oncologist what reasearch says about the benefits or look it up yourself. I didn't think the benefits outweighed the risks.

[Dflur in reply to Andersl]

I agree I did not think the possible benefits outweighed the bad side effects.

[Tennisgirl1225]

Hi Deb, I have had monthly Zometa infusions since my reoccurrence in January. The first infusion I experienced some nausea and chills but all infusions since have been pretty smooth. Typically it is a 20 min drip for me. Stay hydrated, be sure to take the recommended daily dose of calcium supplement too. Praying your infusions go well along with your other treatment and wishing you a Merry Christmas!!

[Nocillo]

I’ve been on Zometa every 3 months for almost 7 years. The only side effect is some extra fatigue for a day or two after the infusion. Good luck to you.

[LucyLooCO]

You might ask about Xgeva vs zometa. It’s much easier because it’s a once a month shot in the arm vs IV zometa. I was on zometa for 3 years until I changed oncologists and the new Dr. Immediately suggested Xgeva switch. You might google this.

[TammyCross in reply to LucyLooCO]

I took Zometa once and had a bad reaction. Switched to Xgeva -- still side effects, but not as incapacitating. In the Q&A last night by LBBC, the doctor said Xgeva is also slightly more effective.

[Debbigbang in reply to TammyCross]

Thank you! I will have to get this one as it is scheduled for Monday. If I cancel who knows when I will get another appt But will discuss with my onocologyst!!

Deb ❤🙏

[Dflur in reply to TammyCross]

same here I ve been on Xgeva for a couple years, then last month my oncologist ordered the Zometa, I had a horrible reaction, every possible side effect I would not repeat that

[Gmaoftriplets]

I've been having Zometa infusions every 3 months for 5 years. I take 1,000mg of tylenol 1 hour before the infusion and that seems to help a lot. Also lots of water.

[Laskia]

I've been on Zometa for about 5 months now with no side effects at all. I go once a month for the infusion.

I watched this very informative video on YouTube which I found gave me a lot of confidence in the treatment. It's quite long, but is presented in a way which is easy for the ordinary person to understand.

I've got mets to the spine (including partial collapse of vertebra) ribs and hip bone. My last scan showed 'sclerotic progression', which my oncologist assured me is healing taking place and not anything dodgy!

youtu.be/8AmoeY9ohoY(Not working as expected?)

[PJBinMI]

Hi, Debbie, Your mother is lucky to have such a caring daughter! I've had bone mets from the time I was first diagnosed with bc over 17 1/2 years ago and have been on Zometa then Xgeva the whole time. As others have said, the first time I got Zometa was the worst and I felt fluish the dat of and day after that IV but that got better over the next few infusions. After several, I had an immediate allergic reaction, not severe, but enough that they immediately added benedryl and hydrocortisone to the IV. Bisphosphonates, like Zometa, were the only drugs then that both strengthened bones and helped bone mets heal. So I was given all the things that helped avoid problems with each infusion: pre treatment with IV benedryl and hydrocortisone in IV right before 1/2 usual dose of Zometa, long infusion time (2 hours for me) and extra IV fluid. I was also told to drink extra water the day before, day of and day after. I don't remember when I was switched to Xgeva, but the one thing I didn't like about the switch was no longer having that time in the infusion room where I could chat with other patients and also learned alot from the onc nurses. They know alot of day to day stuff about living with mbc and ith being in treatment. I have done really well! "Extensive bone mets" were the only mets I had for almost 16 1/5 years . Then cancer cells were found in tissue blocking one of my ureters, a crazy place for mets but I have lobular bc and it often shows up in uncommon places. This August, two tiny mets were found by MRI in the right inferior cerebellum and they were successfully zapped.The only really problematic effect of the cancer has shown up recently as disabling motor control of my right hand probably from mets in lymph nodes near my arm pit. I'm in occupational therapy for that with the goal being to prevent further loss of use of my hand. I am seeing the rad onc later this week and will be asking if radiation could help this at all. Will ask my med onc about other possible options and also my second opinion onc.

this is probably more than you want to know and the main thing I wasnted to convey is the great helpfulness of Zometa and/or Xgeva. With each of those a side effect called osteonecrosis of the Jaw ONJ which in simple words means bone death, mostly in the lower jaw. This wasn't recognized widely until about a year after I was diagnosed. It is considered "rare" and most oncs tell us to get any neneded dental work done before we start the med and to be off it for 3 months before and 3 months after any invasive dental work.

I hope your mom does well!

[Debbigbang in reply to PJBinMI]

Hi

No, not my Mom. I am the one with crazy ride of a disease. My Mom at 78 is as healthy as a horse thank goodness because I don't know what I would do without her. She is my cheerleader ❤.

Thank you for the info and be well 🙏❤. We ate all waiting for a cure of this cells go wild trip!!!

Deb

[08Altima in reply to Debbigbang]

I’ll be keeping you on my mind on Monday❤️

[Debbigbang in reply to 08Altima]

Oh my goodness !!! Thank you so much. What a beautiful thing to say..I am truly touched 🥰🥰🥰🥰🥰🥰

[08Altima in reply to Debbigbang]

Thinking of you today, hope everything goes well! 💕

[PJBinMI in reply to Debbigbang]

Oops! I'm doing things like this alot lately!

[08Altima in reply to PJBinMI]

Hi there! I see this message was in regards to my mom- I very much so appreciate your well wishes for her. She, like all of you ladies, never ceases to amaze me. You attitudes and support for each other is wonderful. Thank you so much for all of the information and for sharing your many experiences. I hope they come up with a solution for your hand that has a swift and long lasting effect!

❤️

[Hazelgreen]

Hi Deb,

When my MBS was diagnosed in 2019, my bones were clearly sclerotic. I then retook tamoxifen for almost two years as I had done well on it as adjuvant treatment 2006-2011. Tamoxifen, unlike the AIs, is said to improve bone strength.

Although I have read that sclerotic bones are prone to fracture, when I recently had a bone densitometry done, I was told my likelihood of fracture was at the lowest level so am not sure which is accurate. In any case, I now take 650mg calcium and 400 IU vitamin D3 twice a day (taken 2 hours apart from other meds), assuming this will help maintain bone strength.

I have declined zometa because I didn't like the possible side effects. Whatever you decide to do, this is to let you know that there are likely others who have decided similarly.

Cheers,

Cindy

[Teddielottie in reply to Hazelgreen]

I too am currently not on any bisphosphonate , (zometa / Xgeva) , with the agreement of my onc . I was diagnosed with low level bone mets to pelvis / spine , but have been ‘stable’ and bones sclerotic for a few years now . A bone density scan this year (which was approved since my 85 year old mum has controlled osteoporosis) , showed no significant change from my previous one (two years ago ) .I am currently only taking prescribed Adcal (calcium/vit D), and oncology keep a check on my calcium levels (at monthly bloods). My onc has said that she will let me know when a bisphosphonate is needed , but said recently that I’m not at that stage yet ! And I will have another bone density scan in a couple of years.

[Hazelgreen in reply to Teddielottie]

Did your oncologist indicate what might tell her that a biophosphate is needed?? My understanding of bone mets is that some are "osteolytic", meaning that they reduce bone tissue (create holes in bone), while others are "osteoblastic", meaning that they cause an overproduction of bone (growths are then described as sclerotic).

I know that calcium levels in the blood rise when bones are broken down unnecessarily (or we consume too much calcium), but is there any other measure your oncologist is monitoring? My oncologist has not mentioned zometa again to me after I declined it at the beginning of treatment. I have arranged for bone densitometry through my GP (I'm Canadian so all medical treatment is covered by income taxes).

Thanks in advance for any information you may provide.

Merry Christmas,

Cindy

[Teddielottie in reply to Hazelgreen]

Hi Cindy , I believe it’s because I had relatively low volume bone only disease , which appears to be currently under control with my treatment, (Ibrance /Letrozole), and fortunately no bone pain .

My Radiology Report in June this year stated that I have ‘Stable disease ...small /subtle sclerotic lesion in right inferior pubic ramus, and in left iliac bone . And some sclerotic lesions are less apparent now than on previous scans (T11. and left iliac crest ). No vertebral compression or spinal canal compromise ‘. I have had a more recent ct scan but haven’t yet received a requested copy of it from Data Services , but I was told I continue to be ‘stable’.

So there is not a strong indication for Bisphosphonates at present , but can be considered if things change ie ., if I were to have further bone mets /progression.

My calcium levels are usually around 2.3 (within the normal range of 2.20-2.60) and my tumour marker ca15/3 has always been within normal range (currently 24).

I am in the U.K. / NHS treatment. x

[Hazelgreen in reply to Teddielottie]

Thanks for your reply. It does seem that your bone only disease is very limited and very well under control! If not never, it may take years before you need new treatments. Nice to think so, in any case.

Warmest of wishes,

Cindy

[Teddielottie in reply to Hazelgreen]

Thanks ! I know I have been very fortunate with my treatment so far , given my breast cancer diagnosis four years ago (on my biography page), but I am realistic in that it won’t work forever...but I am making every day count ! I wish you well too ...have a lovely Christmas! x

[TammyCross]

You didn't say what other Rx you are on. If you are ER+, then you would be on an estrogen blocker. Less estrogen means more risk of osteoporosis and fracture, so that could be a second reason, beyond bone mets, that you need a bisphosphenate. Personally, I couldn't tolerate Zometa and switched to Xgeva, which is also a newer and slightly more effective drug.

[Debbigbang in reply to TammyCross]

Hi

I am ER+, HER 2- I will find out Monday if this is tolerable. I also just started acupuncture. I have always been a relatively healthy person and hardly ever took medication. I am currently on ibrance/letrozole. Bones are stable, liver is not stable yet. Will check on Jan ct scan to see if still growing, possibly a change in medication. I what I don't know. With this lovely diagnosis of mbc, the day of my operation they found out I have high blood pressure. Because of covid going to see the Dr wasn't an option. My Dr hadbeen watching my blood pressure was always just a bit on the border. These meds can cause blood pressure to spike. I keep an eye on it daily as well as watch what I eat and exercise. So...we shall see. I remain positive 😁.

Deb ❤🙏

[Debbigbang]

Thank you so much for thoughts Sandra. I am so glad there is medication that we can live some sort of good quality of life. It could be so much worse!!! You are so thoughtful 🥰. I love all the nurses and technicians I have been around. I am so blessed with the amazing care I receive.

Happy holidays Sandra ☃️🎄

Deb

[Debbigbang]

My grandmother was a nurse through tuberculosis in 30's and 40's. My Aunt was a nurse in the war and after. I have great admiration and respect for nurses I am around ❤. I am very lucky with my onocologyst. I feel we are a team. I believe that is very important with ones treatment.

Deb

[Lna21]

Hello DebbigbangI have been getting Zometa infusions every 3 months since January 2021. After the first infusion I had a bad experience. My all body was aching, I couldn’t even sleep because of the pain. When I told it to the nurse practitioner of my onc she said to ask to get a 30mn infusion instead of 15mn so for the 2nd infusion I followed her advice and it did the trick! No pain at all. Everyone is different but in my experience those 15 extra minutes have totally changed how I feel after the infusion. Also try to drink plenty of water.

Good luck !

Helen

[Debbigbang]

Thank you ladies. I will mention the 30 minutes instead of an hour to the nurses.shoukd be my wishes and no problem, for the dose.

Deb 🙏❤