After being diagnosed with breast cancer in August 2020 with an almost 6cm lump HER2 positive, I have successfully completed 7 x 3 weekly cycles of chemo, but currently working through 18 cycles of pertuzamab and trastuzumab which will finish in November 2021. I had a lumpectomy and I am now half way through 15 sessions of radiotherapy.
My oncologist has recommended that I commence with Zoledronic acid every 6 months for 3 years and Anastrozole tablets for 5 years. I am really struggling with what to do!
I am 54 and was reasonably fit and healthy all my life but now I am feeling really old, I think I look so much older in less than a year. I don’t even like looking at me in the mirror sometimes!
My legs and hips are so sore! When I am sitting and then get up sometimes I can barely move, and I walk like I am 25 years older! I do walk regularly with my dogs, but some days it is a real hard slog, with no enjoyment.
My worry is that if I start on these drugs what if I get worse as it is in the side effects for both.
Also I have cold capped throughout chemo which is not pleasant but I stuck with it and kept around 60% of my hair and luckily it is starting to grow back in although it is very weird with a different texture and curly which I am hoping will settle down in time.
But another side effect is thinning of the hair! Why did I bother?
Then there is the risk to my jaw, and the possibility of losing teeth with Zoledronic Acid. That is so scary!
Then there is the risk of changes to the way my kidneys or liver work! Even more scary! But oh I can take more drugs to help this! But why take more drugs when they can cause more side effects! Or these side effects my get better when treatment finishes....but that is 5 years away?!
How does a person make a decision about this?
I am so grateful for all the treatment and so lucky that I have come through it all, yes I had side effects throughout, but I was determined to get through it, and with the love and support of my husband we have done it and it is wonderful! The medical team were wonderful and I can’t thank them enough.
Now I don’t know what to do? I don’t know how to make this decision because either way I cannot really win. If I don’t take it the cancer may come back and if I do take it I may become a person I don’t recognise nor want to be!
Decisions, decisions!
I am already taking Anastrozole and had my first Zoledronic Acid infusion in January. I have had no adverse side effects. They have to give you the long list of side effects just in case. The part about jaw bone loss for Zoledronic acid is, I understand, only if you have invasive dental treatment such as extraction or root canal. If your dentist knows you are going to have it, they can do any necessary repairs before you start the infusions.
It does feel like a lot that they give you. You will still be looking older from the chemo, so try not to dwell on that, and you are still going through treatment so are bound to look more old and tired just now. I was diagnosed in August too and finished chemo in January. They say it can take a year for you to recover your energy levels, and longer to get over the chemo. Unfortunately, there is no cure for cancer so they have to give you everything they can to beat the cancer, knowing that your healthy cells will recover from it. It is a very tough and harsh treatment!
Mine is ER+/PR+ and I am now on zoledrex for ovary suppression and exemestane. Side effects are manageable and have been calming down. I find movement / being active helps with the joint pain.
I also need zoledronic acid and the oncologist gave me a form that my dentist needs to fill out to say they are happy for me to go ahead. I will have a dental check up before the infusion. I also need to have bloods taken so they know liver/kidneys etc are fine to go ahead. I'm sure you'll have the same.
Like Beatthebreast, I’m on the Zoladex implants (plus Letrozole in my case) and I’ve had 2 of the 6 zoledronic acid infusions. I wasn’t able to get a dental check up before the first one (which was last September) but had one before the second infusion in March - the X-ray I had done then was identical to the one I had pre- first lockdown. The side effects of the Letrozole for me are relatively mild- stiffness after not moving for a bit that loosens once you get going again and tiredness if I over-do it (but those both can be just menopause symptoms!)
I had flu- like symptoms and sore joints after the first infusion but hardly anything after the second. My dentist said osteonecrosis is very rare, they just have to warn you about it. In my mind that tiny risk was outweighed by the benefits in reducing both the risk of osteoporosis (caused by the Letrozole) and of the risk of reoccurrence in the bones
it is all an awful lot to take in. Wish you the best of luck
Thank you all for sharing your experiences and good advice. I think the best bet is to give it a go and see how I go on. I can always change or stop it if needs be.
thanks again and best wishes x
I’m on Zoledronic acid infusions every 6 months for 3 years. It’s absolutely fine & I've has no problems. The risk of jaw problems is I think only with extraction which is extremely unlikely with regular dental checks. My dentist kindly prioritised me for routine 6 month dental checkups starting before the first infusion just to be extra sure all my teeth are fine. I’m personally up for having any treatment if it helps & that reduces the risk of disease spreading to bones which I was told zoledronic acid does by a few percentage points-every little helps
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