I was diagnosed stage 4b in January 2018, had debulking surgery, no adjuvant chemo, then two rounds of carboplatin about 18 months apart followed by Niraparib for 8 months, but no further treatment for the last 18 months.Then 3 weeks ago I needed treatment for hypercalcemia (which I didn't know I had); scans do not show the cancer has entered the bones, but there's enough of it in lymph nodes to trigger a problem with calcium balance, or at least that's the theory.
I was given intravenous zoledronic acid which, although it worked to lower the calcium, caused me a lot of nasty and painful side effects, some of which I'm still suffering now, still living on painkillers, so I am very reluctant to have that drug again. The oncologist wants to give me zoledronic acid again about every 3 weeks and has said they will treat me with carboplatin and gemcitibane to try to reduce the cancerous lymph nodes. I don't think I can stand to have the zoledronic acid again, its far too painful, and I wondered if anyone else has had that drug and how you felt, how bad were the side effects?
Otherwise, I'm fine with the carboplatin, but not so sure about gemcitibane and its possible effects on my lungs because I have COPD and asthma. I'm also unsure whether it causes hair loss - can any of you ladies who've had gemcitibane please let me know your experience of it?
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bamboo89
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Hi, So sorry to hear that you are suffering in this way. I have never heard of zoledronic acid,so cannot help you regarding that. I did have carbo/gem in 2020, 6 rounds, with only slight hair thinning which did not show. Apart from that I found the combination easy,although I did feel more tired on cycle 5 and 6. I hope that you feel better soon. x
Thanks for responding, particularly in respect of carbo/gem, doesn't sound like you had too much trouble with it at all, including any chest/lung problems. I have a feeling I won't get many responses, gemcitibane is not often mentioned on here these days as a treatment, and that's the drug I'm far more interested in and concerned about. I might have clouded the issue by mentioning the zoledronic acid; I suspect the need for that treatment is even rarer, but I was more just curious if anyone else who had it had the same bone and joint pains as me. Zoledronic acid (also known as Zometa) is one of the bisphosphonate drugs more commonly used for thin bones, but also to lower calcium levels when necessary.
Morning. I’ve just finished 6 cycles of Carbo / Gem. I had both chemo’s on week 1 followed by just Gem on week 2 then a week off then cycle 2 began.
Carbo caused a rash and acid issues so it was given over 2 hours instead of 1 hour with reaction medication given the day before treatment, however I found Gem much easier to tolerate, it was given over half an hour,
Everything is worth a try, although I do understand your concerns. We are all unique and our experiences can be very different. Lots of people on this forum had a positive experience with Caelyx however for me it didn’t work. I suppose until you try it you will not really know if it’s right for you. Worse case scenario , I’m sure your team will stop the chemo and find an alternative. Wishing you all the best and hope you are successful if you give it a go. Yvonne Xxx
That's interesting, you had more trouble with carbo than gem - an encouraging response, thanks. They tried Caelyx on me 18 months back, had to stop it within 25 seconds, my reaction of intense pain in my chest was excruciating, so that's one chemo off the list already. Which I guess is why they want to use Gem.... If I can have the chemo without the zoledronic acid, I'll give it a go...just not sure if there's an alternative to it to keep the calcium down in the meantime. I'm hobbling about this morning cos of the pain and swelling in my ankles even after 20 days, its quite difficult to walk, so painkiller down the hatch again🙂
Hi, my friend is having zolendronic acid infusion every six months but that is her maintenance to keep breast cancer at bay. She did have reactions to the drug the first time and her second infusion is coming up.
Oh I really hope the side effects with the second infusion aren't so bad, and at least its six months apart, not every three weeks. I'd quite like to know how it goes if possible... Thanks for the response
Hi, I was prescribed oral Alendronic Acid (for osteopenia) which caused me massive persistent bone pain ad gastric issues. When I said I couldn't take it any more, they offered me an alternative - Risedronic Acid, also oral, and likely to have the same side effects. I refused that on the basis that it was likely to trigger the same gastric issues and that I'm already quite vulnerable to that given where my cancer has spread to.
I'd previously had a chat with a friend who gets an annual infusion of Zoledronate and it's worked very well for her. She gets bone pain for around 3-4 weeks after the infusion, then she's all clear and side-effect-free until the same time next year. I suggested it to the bone density CNS and she agreed that I qualified for that. So I'm now pulling together all the paperwork and bloods tests to make sure I can get the treatment. I should get it in the next week or so and can report back if that would be helpful for you. It may well be worth you asking if you can have the annual infusion as opposed to more frequent treatment.
Well the trouble is, I'm not having the infusion for my bones, its to get my acutely high calcium levels down, which are associated with my cancer; and that means I may need it every 3 weeks just to stop the calcium shooting up again. Seems there's nothing else that will bring the calcium levels down, other than hoping chemo will knock the cancer back sufficiently to stop it happening. For bones, they usually give the i/v treatment every six months or so...
I’m sorry I misunderstood the reason for your treatment. I hope you can find a solution that helps. manage the Calcium levels without the unwelcome side effects. Annie
No worries, thanks for replying. I just wanted to ask you if you could find out from your friend how bad the bone pain is after she's had the infusion annually? I seem to be kind of crippled in various places - my hands and wrists were so swollen and painful for a week I couldn't open my front door if the painkiller had run out, and now I have the same pain and swelling in my ankles stopping me from walking much unless I've had a painkiller. Was she as bad as that, am I having an extreme response, or is it just me making a fuss about the pain everyone gets with this drug is what I'm curious about. It's now been 24 days since the infusion and I'm still hobbling about on a stick...
The other thing is, the hospital where I was treated as an inpatient never told me about any side effects, and when I complained about having a fever for 3 days afterwards followed by intense pain in my neck, they just said the fever was probably a bug I picked up in hospital and the neck pain just a spasm of some sort. I cannot believe they were so dishonest, because it left me entirely unprepared for the ongoing swelling and pain...
Oh, I’m sorry to hear you’re experiencing such extreme side effects, and that the clinicians didn’t warn you about the possible side effects.
D says she generally experiences a couple of days of feeling like she’s coming down with a nasty virus, then she picks up again. Then comes the bone pain. She describes it as a deep all-over ache, with wrists, hands and knees worst affected. She is usually able to get on with her day if she keeps taking paracetamol and ibuprofen but the bone pain can last up to 4 weeks for her. D has Crohns which I understand may make her more prone to bone pain, but she’s not having to manage chemo or other very toxic drugs to manage her health.
Pain is subjective. If what you are experiencing is severe for you, it’s severe… end of. You need to be supported to mitigate and manage that pain. You are not making a fuss, or being a wuss. You are entitled to understanding and support with this.
I don’t know your circumstances but I would go back to my Oncologist and be very direct about how debilitating and distressing this is for you, and insist on getting appropriate medication/being referred for urgent help from the hospital pain management team. You could also try the CNS team, the team who administer the infusion. (I presume the chemo nursing team?) or even your GP. My circumstances mean that from a pain-management perspective, I can also ask my palliative care consultant for support. I kind of hope that doesn’t apply to you, but they are genius at finding ways around significant pain.
It’s not acceptable to be left in significant, prolonged pain with no support, and I wouldn’t hesitate to use that very direct language to communicate how badly this is affecting you.
Hoping that you can get the support you need very soon.
Just one more thought - have you tried a TENS machine? I broke my back earlier this year (long story!) and while pain meds were absolutely essential, the TENS machine did a decent job of distracting from some of the residual pain. They can be quite cheap (£30 or so) from Amazon. Pick one with a higher number of channels so you can ‘treat’ more areas at the same time. They’re very light little devices, I wear mine in my pocket and as long as I tuck the cables in, no-one would know I was wearing it. But even if you had the sticky pads on each wrist, they’re unobtrusive. If you wore the device by your waist/lower back (and you’re not too tall!) the cables might just reach to your ankles and wrists so you could alleviate both together.
Hello, although I've no experience of your particular treatments, I notice you share your concern of gemcitabine on your lungs as you have COPD and asthma. Have you talked with your respiratory team? And also may the Support team at Ovacome be worth ringing?
i had Gem Carbo from Oct 2022 to Feb 2023. With the Gem other than the usual fatigue and nausea (which could just as easily be the carbo) i just had hair thinning. Pretty noticable to me but not to. anyone else. I have moderate asthma and did not experience any of the respiratory side effects.
Thanks - glad to hear you had no chest issues with the treatment. As for hair loss, yes, mine thins when on carboplatin, just wasn't sure if Gem was one of thosethat made you lose your hair completely, glad to hear it isn't.
Hi- Gem thinned my hair but I didn’t lose it. Carbo can cause hair loss. I was allergic to Carbo so received Gem only, more treatments than the combined protocol. It shrunk my tumor. Did make me tired. Rest a lot. 🙏❤️
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