Fulvestrant side effects and updates

[JonaC38]

After 4yrs of silence and no medications against my oncologist advice, my breast cancer is back. Atleast I was spared from horrible side effects for those times. My 2023 January Ct scan showed mets again in mu lungs, liver and some other areas. It progressed slowly as I was going through so much financial stress. My oncologist started me into fulvestrant injections October of 2023 after 2 surgeries recovery (kidney stone and cyst). My latest CT scan of February 2024 showed 50% decrease in sizes of all the mets. I should rejoice by now but side effects are keeping me depressed. Side effects like plantar fasciitis and knee joint pains especially when I sit too long or just few minutes and driving. I discussed these issues with my oncologist and lookslike he wants to ignore my concerns. As I walk out of the clinic my emotions exploded and they (2 oncologist) tried to pacify me and agreed to my request. I will be receiving my fulvestrant injections every 2 months right away and we will see from there if the mets will progress or slowly disappear despite of not following their protocol of monthly injections. I hope to update my page about my treatment and other people can relate to my experiences. My son is turning 6years old now and my goal is to be alive till he needed me. Keep fighting warriors, live life to the fullest everyday and be positive at all times. Miracle do happen everyday. God bless everyone 😘😘😘

[13plus]

I'm sorry to hear you've been having a hard time but I would be concerned about not having the Fulvestrant monthly. Are you sure your plantar fasciitis and knee joint pain are from the injections? I haven't heard of that before. It could just be a coincidence of timing and unrelated. Can you get physiotherapy for your feet and knees? It should help a lot.

[JonaC38 in reply to 13plus]

Thank you for the suggestions, my oncologist monitors my bone thru scans and I don’t have problems as such. I had those pains only after a month of fulvestrant treatment. I’ve been going to a chiropractor for 4yrs now to keep the pain away from collapsed vertebrae due to the cancer and radiation treatment (stable btw). It helps me to correct my posture and keep away those electric shocks. I don’t have the luxury of not working, so I need to makesure that I can keep my job. I am also taking soursop homemade tea to complement the treatment. I just need to hope for the best outcome and I am having my CT scans every 3months for now.

[Beryl71]

Fulvestrant has been working well for me after letrozole was discontinued . My mammary lymph node has reduced from 21 mm to 9 mm between September and March. I have no side effects other than sore buttocks for a few days. I would look into your other issues carefully before changing your meds . Good luck! Love Carolyn x

[cpidacks]

I have been on Fulvestrant for 5 years. I am not on any other meds for my MBC. My liver met has been stable and all labs are in the normal range. My side effects from the shots are a sore bum for a few days, itching and sometimes a lump and bruise at the injection site. I have not heard of the side effects you are having with Fulvestrant, but everyone is different. Keep us posted if the side effects subside on the two month injection schedule. Good luck to all of us in our journey.

[NPmary]

I am so sorry, of course you want to be as well as you can for your son.May l suggest seeing a family doc and a palliative care doc to help you get symptoms under control and manageable.

If your monthly faslodex is keeping everything stable - personally l would continue that treatment because the option of worsening mets and a harsher treatment than faslodex will absolutely not give you more quality time with your young 6 year old. If you need a second opinion - need a doc who listens a bit better and helps you come up with a plan for better living - then do that - you deserve quality medical care and compassionate caring.

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[NPmary]

I totally validate that faslodex causes joint pain and stiffness and tendon problems (l had and have these) but if faslodex is keeping the MBC monster at bay - then, your docs thinking is that that's a little price to pay because he knows how much worse other treatments are and how much worse disease progression is.

[diamags]

Ask your onc, but I take Circumin for the joint pain and it works like a charm. It will take a few weeks for it to set in.

[JonaC38 in reply to diamags]

I might look for that. Thanks

[Petmatt in reply to diamags]

I swear by curcumin and take a good quality organic one. I've taken it for years to keep me off pain meds for osteoarthritis. Also I started acupuncture 3 years ago and in my case it really helped too

[JonaC38 in reply to Petmatt]

Oh I see its the turmeric, I used to eat that when we cook our rice we mix it and I drink that too as tea. Even now I drink that already.

[TammyCross in reply to JonaC38]

The oncology nutritionist I see said that it is fine to get turmeric and curcumin through food, but not through supplements (doseage issues and side effects), so you are doing the right thing there.

[Yikes123]

Ask your team for a referral to PT. That helped my plantar fasciitis

[TammyCross in reply to Yikes123]

I was just going to say that. I didn't have side effects from fulvestrant (and another SERD), but I did from AI's: knee pains and shoulder pain were severe, and I lost range of motion and strength. PT really helped. It also hurt at first, but as it worked, as the surrounding muscles got stronger, I had less joint pain.

[Saltandlight]

Praying that faslodex keeps everything at bay for a long time for you!!

[kellylinkane]

when you going in to have folsodex injectiin bring electrical hot pad i told nurse the syring need to heat up for 10 mins before injection and i request ice pack to injection site otherwise will be hurt and feels walkingdiificult and bump to the bouttock then you can do monthly though or at least eveey 6 weeks less truma to your nerve seems injection too fast hurt your nerve little will recover.

[RLN-overcomer]

Greetings: 😊Sister/Warrior/Thriver, and yesss Over-comer I do pray you will have many more years to live, love , and laugh with your child, and your loved ones🙂. I admire your Strength, Courage, and Warrior Spirit.😇. I pray for the Super Natural healing, and restoration of your temple. Amen🙏😇 XoXo