Letrozole joints, bone loss, low platelets, high cholesterol

Hi Flowergal,
That is too bad you are having so many issues! It must be very difficult for you. My husband had lung cancer and had low blood platelets. I did some research and discovered that Vitamin B12 helped his platelets return to normal. Besides taking Vitamin B12, we also ate a lot of foods that have Vitamin B12 in them such as peas. You can do a search on the Mayo Clinic website to see what other foods have Vitamin B12 in them also. Iron helped my husband's fatigue a lot. He took iron tablets and also ate foods with a lot of iron in them such as beef, beans and spinach. He also had memory problems. We found that having him drink Gatorade and lots of water helped his memory a lot. For your dry vagina, you might apply an antibiotic cream such as Neosporin often. I had a similar problem and that helped me.

Research the side effects of all of your medications on the Mayo Clinic website. You can trust their results. Side effects of your medications may be causing some of your problems.

Bring your problems to God. Just tell him how you feel and ask for his help. After all, he made you and he can fix you! God is always there for us. We just need to reach out to him.

I wish you the best with all that you are dealing with. I will say a prayer for you.
PML

@flowergal did you mean your ER% is low? If so maybe you can ask your oncologist if an AI is that helpful in the context of lower response due to lower ER%.

Just wanted to also say that on the osteoporosis forum there is a lot of discussion about the difficulties in getting off Prolia: there is a "rebound" with loss of bone density and increase in fracture risk. Some experts (McCormick, Leder for example) suggest either doing Reclast or Zometa instead. If you do 1-3 shots of Prolia you apparently could do Reclast/Zometa (they are both zoledronic acid) or oral Fosamax. If you do longer term Prolia then Reclast is needed to prevent rebound. I am just suggesting this concern as an osteoporosis sufferer, so ask your doctor about rebound and the best way to deal with both bone loss from cancer meds and potential rebound from Prolia.

Hi--I feel like the question of needing an AI is an important one. Try asking your oncologist directly what the risk of recurrence/spread is with your cancer. And then ask how much that risk is reduced by letrozole or other estrogen inhibitors. Then you can make an informed decision. If it is a large amount, it might be worth it to you. If not, not.There is no perfect answer. But with a bit more information you can decide what is right for you. If you do have a chance to have this conversation--I'd be interested to know what you find out.

I'm sorry you suffer from so many side effects! I agree that you need to talk with your onco to see if there's benefit in taking AI. You might want to switch to exemestane to see if it's tolerable. I had severe finger stiffness, pain on my foot and collar bone, high triglycerides while on anastrozole. My onco switched me to exemestane, the finger stiffness got a lot better, the pain is more tolerable, and my triglycerides drops to under 100.

Hi
I had the same diagnosis as you. I tried Tamoxifan for 3 wks. That was enough. I talked with both my oncologist and surgeon. They were fine with me not taking anything. I just had my mammogram Monday. It's clear of cancer. Still coping with radiation fatigue And now anemia. 6 mths post treatment. So wanted to share. You have to do what's best for you. This whole process is difficult enough without a med that's not guaranteed to help and robs you of your health. Good luck

I will ask her about this drug. Thank you.

I haven't gotten a clear mammogram yet. I'm glad you did.
My Dr wanted me on an AI. But I am trying to do a balancing act to stay around and functional for my daughter and her two babies.

Thank you for the response.

Exactly. I need to ask again what the percentage of a return is without AI.

Thank you for the reminder.

Yes I had a low ER + number but was told any positive result should be treated. My original biopsy was not positive but the surgical pathology were a low positive.

I met with a rheumatologist and a Endocrinologist and yesterday I spoke with my new GP. Who is a brilliant young lady. We discussed Prolia because I had to get two shots in 2019 and my numbers stayed good in 2022. The numbers now are much worse since being on AI's since last December.
I had no problems with the drugs in 2019. All the Doctors think Prolia for next three years then reclast. I am a little comforted by the fact my brother was on Prolia for several years. He apparently inherited this too.

I appreciate your response. I have to re look up my ER % before I talk to Doctor and ask her to remind me of the reoccurrence % without AI. I don't think it was super high.

It's so much more complicated than I was led to believe. My oncologist told me this would be a "blip" in my life. I feel mislead.

Thank you for the informative response. I want to keep helping take care of my grandchildren.

Thank you for the prayers.

Yes I need to step up my iron intake. And you are right about Gatorade - remarkably I was drinking that for a while to get me through the day. I take B 12.

I met with my new GP today and she agrees the suddenly high cholesterol, and low platelets are a reaction to these drugs. And they are also bringing up my A1C sugar numbers. Such a mess.

I appreciate your response and thoughtful suggestions.