Hormone Therapy Experiences

[Cscholtz2021]

Good Morning Everyone, I'm going to be starting hormone therapy in Jan. I'm 43 yrs old, diagnosed with stage 1, grade 2, breast cancer, ER+/PR+, oncotype 18. Chemo was not recommended. I had lumpectomy in Oct, halfway through radiation now. I'm so nervous about the effects I'll experience with Zameta. This is an infusion to prevent bone loss. Then I will start Zoladex shots every month to put me into menopause. Long term, I'm considering taking my ovaries out. Can anyone share their experience so I have some context of what to expect?

[Iamagardener]

I am older than you but I have a similar story. Diagnosed late January 2020, lumpectomy mid-March 2020, short course partial breast radiation May 2020, started anastrozole late August, first Zometa infusion October. 1A 7 mm, oncotype 13, age 66.

Since I am older and already had some early/mode rate arthritis in some joints, I wanted to know what my "normal" was so I delayed taking the anastrozole after radiation so I could take myself off of some meds & supplements (voltaren, Tylenol, turmeric, etc) to see what my initial pain level was. That way I could tell if I was having additional issues with the anastrozole. I have not had too much trouble; I did join 2 AI support groups on Facebook and Share also has an AI side effects support group.

From the support groups I learned to drink plenty of water before Zometa and also bring water with you (I brought and drank 2 quarts!) I forgot to take ibuprofen as recommended but it didn’t seem to matter. Some of the members suggest asking that the infusion be slowed down to 30 minutes. I had no side effects from this except needing to pee very badly when the infusion was done!

I think there are also Facebook groups for younger people like you who take additional meds and have the challenge of deciding about removing ovaries.

The biggest takeaway I have from the support groups is everyone is different. My other observation is that most of the posts are from people who have more severe side effects so it can be a little scary reading at first. I have learned some good things and I currently take 2 supplements: tart cherry extract and regular Claritin daily. I did research on both of those to see if they had efficacy with HR+ breast cancer and I believe they do as I was able to find scholarly articles and clinical trials to support their use. Always check with your oncologist, gp, or gynecologist.

Meryl

[Cscholtz2021 in reply to Iamagardener]

Hi Meryl, thanks so much for your information and I’ll be searching on Facebook today for some groups. I do want to have my ovaries removed but dr says wait at least 5-7 months of zoladex. Appreciate all the tips about preparing for zometa infusion. I don’t want to think my way into any side effects so being mindful of remembering everyone is different.

[Iamagardener in reply to Cscholtz2021]

Hi if you look at the post below yours (manufacturers for generic exemestane/aromasin, someone asked about my facebook groups and I have the names of the 2 groups. I think many people are members of both groups. Let me know if I can help in any other way. m

[suenavywife in reply to Iamagardener]

Hi Meryl, what does the cherry extract and Claritin help with? I’ve not heard of this and I have an appointment with my oncologist in a week. I have a lot of pain in my hands that I think is from anastrozole.

Thanks

Sue

[Iamagardener in reply to suenavywife]

Hi Sue, both of these have anti-inflammatory properties. I learned about both of them from 2 hormone therapy support groups on Facebook. I also researched both of them. I did not have chemotherapy but a number of FB members said their oncologists recommended Claritin during chemo as an anti-inflammatory. Here is also a study, done in Europe but also published by ASCO here. While the Claritin was not given as a treatment per sec for the breast cancer, the analysis seemed to indicate a better outcome for those taking Claritin or Claritin like medications ascopubs.org/doi/abs/10.120... Apparently tart cherry has been used for gout as an anti-inflammatory. Here is a study where it was tried with joint and muscle pain from AI use: sciencedaily.com/releases/2... of course you always need to check with your oncologist. Don't be surprised if he/she has not heard of these. I also suffer from wrist pain and my oncologist has said he would put me on Cymbalta if it gets bad enough. Just don't want another prescription med if possible right now; I am using voltaren gel daily. BTW some women in these groups swear by Claritin and tart cherry and for others it does not seem to help. I think it does help me; I take a very low dose of the tart cherry but I might move up to a larger dose. Wrist pain is sometimes bad (I am work in a public garden and I use my wrists a lot!) Also on the support groups many women do have hand pain, trigger finger, and carpal tunnel syndrome. While some oncologists don't think these are side effects of AIs, they are listed in the paperwork I received.

[suenavywife in reply to Iamagardener]

Thank you for the information! I did not have chemo either time, thanks be to God! I’ll be checking out your suggestions. I was given the Cymbalta generic Duloxetine. I did give me lots of pain relief, however, I had lots of the side effects and after 6 weeks stopped taking it. It’s been two weeks since stopping it and my different pains have returned. I don’t want more RX’s to combat my pain, and then have to take something else to counter the side effects. I majorly need the anti inflammatory things.Thanks again,

Sue

[Scrapbooker in reply to suenavywife]

I found for Duloxetine it’s side effects after 2 months lessened but then was given gabapentin too. The 2 of them work together & I finally didn’t think I was losing my mind & memory. Works best at night for me. My doctor should of prescribed in first place. I was told by friend so I sure did ask oncologist. Duloxetine is deadly I do believe but finally got ok.

[suenavywife in reply to Scrapbooker]

Interesting, I was on Gabapentin before the new doctor prescribed the Dulexetine, and told me go off the Gabapentin. I had no side effects from Gabapentin, which was prescribed by a different doctor. Too bad the docs can’t get on the same page for overall health. Primary care, oncology and pain management. I’ll keep asking! Thank you

[Scrapbooker in reply to suenavywife]

I’m big believer in Tumeric with Ginger Root. Without it my joints hurt so bad I can hardly walk.

[suenavywife in reply to Scrapbooker]

I asked my oncologist about taking tumeric and she said no. It blocks the benefit of taking anastrozole. I believe I am experiencing some benefit from taking tart cherry juice!

[Scrapbooker in reply to suenavywife]

Thank you for that information. My oncologist knows I take it & hasn’t said not to so I’m going to ask her & resident both about Tumeric & I’ve been taking for a long time with Anestrozol. Omg I could’ve been taking Anestrozol for no reason😢

[suenavywife in reply to Scrapbooker]

I need to do some more checking into this! Thanks for letting me know.

[Rhwright12]

Hi! U can ask for the Zoladex shot every 3 months...They typically don’t offer it unless u ask. 🤷‍♀️ When it comes to the Zometa I’m not sure why they are giving it to u. But it is also recommended at every 3 months. 😀

[Hollykins in reply to Rhwright12]

I don't mean to negate your advice. I just want to provide the information I was given. I was told by a nurse that does my Zoladex injections Not to do the 3 month ones. Apparently the medicine can run out before the 3 months are complete. Then one is left without the menopause affect that allows one to take aromatase inhibitors.

My oncologist suggested it in the Spring for fewer clinic visits. The clinic nurse said many doctors are against it. For this & several other reasons, I switched to another oncologist.

[Rhwright12 in reply to Hollykins]

I’ll be on the 3 month shot for 3 years in February...No issues here...Just a suggestion...😀

[Hollykins in reply to Rhwright12]

Good! I'm glad. My previous oncologist mentioned how it could depend on how quickly one's body metabolizes zoladex. I'm pretty cautious by nature. And really like seeing the nurses at my monthly visits. They are happy to answer my questions about anything to do w my b.c.

Oh! I'm really glad to hear it will be 3 years for you in Feb. I will be on it for 2 years in March. My previous oncologist kept pushing for me to have my ovaries out at 4 appts. My new oncologist says I don't need to. May I ask, have you gone off zoladex to have your hormone levels tested? I haven't. My new oncologist said to be off for over 2 months & even then the hormones can change. To make you think you are in menopause when you aren't. I just turned 56. Maybe my birthday wish should have been for Menopause!

I hope you are having a nice holiday!

[afraidofdrugs]

Hi, I have a similar diagnosis , but am 49. I don't have my oncotype score yet though. It sounds like they are giving you shots to put you into menopause so that you can take an aromatase inhibitor, is that the plan? If so, I would ask the doctor why not take tamoxifen instead of the AI since you're not in menopause yet. I would also ask for a breakdown of risk factor since you already did lumpectomy and radiation.

[Cscholtz2021]

afraidofdrugs Thanks for your post! I have a history of blood clots and Tamoxifen causes them, so my only option is to go into menopause (starting jan 2021 with zoladex shots), and then start the AI in Feb. The zometa is the prevention for bone loss. When you say breakdown of risk factor, what do you mean? This sounds like a good thing to ask.

[afraidofdrugs in reply to Cscholtz2021]

Cscholtz2021 Hi! and Happy New Year! By a breakdown of risk factors, I meant what are the chances you will get cancer in that breast again since you already had a lumpectomy and radiation. My surgeon broke down the risk factor in percentages, which was lumpectomy alone, 40% chance of a recurrence in same breast, lumpectomy plus radiation 4-6% chance of recurrence. and then Hormone therapy would reduce recurrence risk by 50%. So if radiation and lumpectomy were done, then we're talking about that 4-6% chance becoming a 2-3% chance. She's the first doctor that broke it down for me like that, whereas before I was always just told, this is the protocol and what you have to do. Now every situation is different of course, but I would press for some numbers if you can.