Breast cancer patient also with osteoporosis: AI, Prolia and Reclast

@sherrilei I use tempeh more than tofu. Trader Joe's has organic.

@sherrilei I've been marinating & baking tofu for years, then adding it to salads or just eating it. Do you have a favorite marinade recipe? Mine is a light oil (sunflower or canola), wine vinegar, soy sauce, ginger, & garlic. I press the water out of a block of tofu, cut it into 16 small blocks, put it into a seal-able container & cover it with the marinade. Refrigerate for a couple of days, then bake at 350 until it's the brown you want it (this can vary from almost charcoal to very light brown).

I just filled a large jar with some of the ingredients you suggested. Now it sits marinating in the fridge and I’ll baked it tomorrow. Can’t wait to try it. Also want to try tempeh.

@nlars I’m going to buy some
Do you marinate it the same way as tofu? And bake it

I have to say this thread gives me anxiety at a very high level. I was diagnosed 3 years ago with agressive but small, early stage breast cancer with surgery, chemo, radiation and Anastrozole. I asked for DEXA before it was due in another year. Before the BC diagnosis I had some mild bone loss in a 2 year previous DEXA. I had been on HRT and that stopped immediately due to Estrogen positive cancer with an Oncotype of 43. 1 year ago the DEXA showed osteopenia and osteoperosis. My oncologist "left it up to me" to decide if I wanted to treat the osteoperosis. Of course, I wanted to treat and she seemed reluctant to advise me as to how to go. She suggested rucking and I was already walking 2-3 miles a day. I researched everything based on what would also help avoid recurrence. Long story short, I chose Prolia and have had 2 injections, scheduled for a 3rd soon. Since then I have read so much about Prolia that I am ready to tell her to stop Prolia and do Reclast for a treatment or two. Everyone on this thread has an opinion, but it hasn't helped me at all, rather it has caused anxiety. I am 76 and also have an endo that I see soon. In my follow-ups with him he has never mentioned the my osteoperosis, just treats my Graves. Am I a victim of poor care or my own anxiety? I had to wait 18 months to get an appointment with a "world renouned" bone doctor, but that isn't until after I get another Prolia injection. Can anyone help my anxiety. I am scared to death that I might fall along with the fear of recurrence along with the horrible Anastrozole side effects.

@sherrilei .yes I marinate it overnight usually. Then I freeze it lightly so I can cut it into small cubes. I airfry those cubes then add it to stir fry veggies and serve with rice. It has a unique taste but we like it

@bunnymoon this is the regimen my bone specialist recommended, only she said maybe after the first year of reclast I can take a drug holiday

@phonso i understand your anxiety. It’s a lot to cope with.
My suggestions are based on what I’ve learned.

Tell the endo you want his help and opinion on your osteoporosis. In reality, he cannot dismiss this while treating Graves. He must consider your bone health while treating a thyroid disorder. I think doctors back off if they think the cancer doctor is handling it. My cancer providers made it clear from the beginning that they treat cancer. If I have a headache or hot flashes I should see my PCP or gyn. This is the way it was handled when I started having headaches. My PCP checked everything, eliminating any possible cause. Then, it was clear it was the high dose tamoxifen and the oncologist lowered the dose. The cancer center also recommended I continue to see my endo for my existing osteoporosis, but that if there were a bone cancer concern I could see their oncology rheumatologist.
It is up to my endo, from a different medical system, to manage my bones while taking into consideration the tamoxifen I take.

If you really want to not do another Prolia tell the endo. Tell him you will be seeing a specialist, but meanwhile need to transition off and need him to address it. He can help with the timing of the change. One option might be to take an oral bisphosphenate. Like alendronate, until you see the specialist. At that time you could easily transition to Reclast or whatever they recommend. The bisphosphonate will maintain the benefit you got from Prolia, provides the same bone protection from metastasis to the bone as Reclast and Prolia.

I want to mention that my sister took Prolia for 3 years without problems. So there’s always the option for you to do one more Prolia, see the bone specialist, and decide when and what is the next best step.

One more thing. I’ve been reading a lot about the thyroid as I now seem to find myself at subclinical hypothyroidism that is getting worse. It is really important that your Graves be closely monitored and your medication controlled to keep your levels as normal as possible. High thyroid levels have been associated with shorter hormone positive cancer disease free years. My issue is getting the levothyroxine right and not too much, which scares me. Your issue is keeping those numbers low, or doing a partial ablation to reduce the size of the thyroid, if that’s an option.
I truly don’t want to add to your anxiety, but for myself, when I know there is an issue and its being properly addressed I feel calmer. Much better than finding out later, too late.
Attached is a research paper you can share with your endo and the bone specialist. It would be good to ask the oncologist opinion on this study and how it relates to your care.

I asked AI about this article and it looked it up for me. It pointed out the weaknesses of the article and that the research took place in the 90's when there were much less treatments (Tamoxafin) and surgeries. In addition, it reassured me that my Graves was not a factor since I had an ablation and my thyroid levels are managed with Levoxyl and kept within good and normal levels. I think my current breast cancer and osteoperosis concerns are more related to tumor size, Oncotype score, Receptor status, stage 3, surgery, chemo, radiation Bone status is what is driving my attention and I will continue to concentrate on the fact that I had no node involvement and lumpectomy, chemo (Oncotype 43) radiation and on Anastrozole while monitoring every 6 months with onco and mammo and now 3 years out with no recurrence is the best thing to work on with the cancer side and the Prolia for another couple of years followed by oral for a year or two along with DEXA that could change that plan. When consulting AI about actual reporting of Prolia side effects I got the true percentages and they seem reasonable, although you have to ask for present actual percentages and not the side effect percentages reported while research for approval was going on since there is an increased incidence of back pain that was not included in the initial finding. Thanks for the article. It actually encouraged me after I researched it, and got rid of the scary part of the title.

@phonso I took prolia for a few years without a single issue. My doctor told me ahead of time that I needed to keep my calcium up and stay hydrated.
Honestly this forum can bring so much encouragement and support, but it can be a double edged sword. The people who do the most posting are the people who are having trouble, that doesn’t mean that everyone has issues with these treatments. I hope this can put into perspective how much anxiety you can get when you only hear from the people having side effects. The people who don’t have any issues just aren’t here posting.
I have definitely felt that treating my bones is very important because a broken hip or a broken back can be the thing you don’t recover from. Side effects from some of these drugs and the lack of estrogen has been a drag but I can and do live with it, and the time it buys me with my loved one is worth it.
I have also taken zometa, as has my husband with zero side effects.
Have you had any issues with the prolia?
What specifically concerns you about your treatment?