Forum Discussion
saffygirl
4 years agoMember
Letrozole(Femara) +Zoledronic Acid (Zometa)
I am to start 5yrs of Letrozole(daily pill) and Zoledronic Acid (6 monthly intravenous) in a few weeks. The side effect sheets make for crappy reading as usual and am keen to hear anyone's experience that are taking this combo. I know we all react differently to these drugs and also know there is quite a rate of drop-out altogether on the hormone therapy. Stage 1...grade 3 ER positive with no lymph node involvement. I have had lumpectomy, 2d surgery to get a bit more....chemo and just finished radiation. Now the new stress of how I will cope with these drugs and how well or unwell I will be for the next 5 years is freaking me out a bit. 5 yrs of possibly being unwell and feeling crap for a chance that cancer may or may not recur. Its another shit hard decision to make. Be grateful for anybody's experiences and input.
11 Replies
- AfraserMemberMy lymphoedema specialist commented that in her experience a trigger thumb or finger wasn’t uncommon with people on Letrozole. That of course isn’t in any way definitive. It may have nothing to do with it. I’m older and my mother had a number of trigger fingers in her final years. What surprised me was the total absence, quite suddenly, without doing anything (and still on Letrozole). It would certainly be worth waiting a bit before contemplating surgery. Best wishes for a speedy resolution.
- Julez1958MemberThanks @Afraser that is interesting.
I am going to get a second opinion from another oncologist here in Sydney as I am not really “ connecting” with the one I have even though she was referred by my amazing breast cancer surgeon who referred me to a similarly amazing radiation oncologist for my radiotherapy and plastic surgeon for my reconstruction.
The present oncologist first tried to tell me it was “ age related” ( I am 63 but have never had anything like this before and my 88 year old mum has no arthritis and almost no aches and pains) and then said “ oh anyway you can have surgery”.
I figure if I am going to have a long term relationship with my oncologist there needs to be a connection. - AfraserMember@Julez1958
After over eight years on letrozole, I too developed a trigger thumb. I considered getting a thumb splint fitted but gave it a bit more time. One day I realised it was just fine! It completely resolved without me doing anything (that I am aware of). Been clear now for several months. Best wishes. - Julez1958MemberHi there
i have been on Letrazole ( femara) for 18 months and have developed “trigger thumb.” And am
currently looking at avenues to deal with it.
Many ladies report no or only mild side effects, others more severe.
The best comment I read in here was that the most important side effect of the Letrazole was she was still alive!
Important that you let your medical team know of any side effects if they occur. - saffygirlMemberThank you so much. 💕💕💕
- iserbrownMember@saffygirl
If you feel your hands slipping from the wheel, don't fret! There's always someone online to help you through
Best wishes as you hit that accelerator
Take care
Sending a virtual hug - saffygirlMemberThank you everyone for your reply’s. I appreciate you taking the time to answer. I feel better about it all now as it doesn’t feel so much like the great unknown. I will soldier through it as I have with all the prior stuff. It’s a road we none of us will be getting off any time soon. I’ll just strap myself in and look forward with my foot on the accelerator and my hands steady on the wheel until it’s done. 😬😬😬
- BeaglemumMemberHi @saffygirl,
I am also on Letrozole with 6 monthly Zoledronic Acid IV, have been on this since March 2020 and have had 5 infusions to date. No side effects from the infusions, some minor effects from Letrozole but manageable, aching joints, feeling old and vaginal dryness being the worse. Have had bone density and a bone scan in Dec 2021 and no worse now than when I started. Vaginal dryness treated with vagifem low as prescribed by Onc, script for a couple of months seems to have done the trick and is not needed going forward.
Main advice I have is if you are feeling any effects from the drugs talk to your Onc, they can help and if necessary change the combination of drugs you are on, don't suffer in silence. Good luck - GlemmisMemberI have been on Letrozole for 5 years now and have just completed my 6 six monthly infusions of Zometa. I had some aches and pains in the beginning but just now have a bit of stiffness but that could be from getting older. After the first Zometa infusion I had flu like symptoms for a few days but nothing with the rest. My oncologist says I may need a yearly infusion from now depending on my bone density so am due to have another scan. Those side affect sheets do seem scary but serious side affects are rare so I wouldn’t take too much notice. My oncologist also mentioned there is new research to show that bisphosphonates may prevent bone metastasis.
- AllyJayMemberI've been on letrozole since mid 2017 and although I don't have the Zolendronic Acid, I do have a Prolia injection every six months for osteoporosis. I was osteoporotic even before starting the letrozole but it has not become any worse over the past five years, which it would have done without the prolia, even if I wasn't taking the letrozole. I have other medical conditions which cause me big problems with my joints, tendons and muscles, (also skin, blood vessels, kidneys and more), however I'm commenting on the joint, muscle and tendon situation for myself. I can only say that these issues for me have not become worse than either my rheumatologist or myself would have expected five years down the line with my autoimmune condition, even taking the letrozole. I believe that had I not already had these problems, I would have had little problem in this regard. I have had some thinning of my hair and vaginal dryness but am managing with these issues. The only problems I've had with the prolia is that I get a headache for two or three days after I have it, other than that, no problems.