Hi all! Over 3 years into it all and I had to stop letrozole a while back, for maybe 10 mos. or so, because it was crippling my hands; then I had the cancer antigen test a few weeks ago and my markers were up a bit, so I started back on letrozole, but only every 4 days and my question is, has anyone else done this spot treatment with letrozole and did it keep your markers down? Oh and by the way, Quest labs will order a cancer antigen test for you without you having to go to the onc if that's what you want. I'm not ready to go back to the onc just yet, and my internal med dr. wouldn't order the test, trying to force me back to the onc! It was only $79. They are also called Lab Corp if anyone is interested. <3 Merry Christmas and God bless and heal us all in Jesus name, amen!
Letrozole question: Hi all! Over... - SHARE Metastatic ...
Letrozole question
girlsptz has offered sound advice. I would only add that speaking with your doctor about switching treatment (such as to Arimidex, which is similar to Letrozole) would be beneficial, as you may tolerate it better. There are also other treatment options. But self-prescribing a regimen on your own is very risky, and you are highly encouraged to discuss options (which are many) with your medical team.
Your post made me curious about your history. Three years ago, Sandra wrote a welcome to your first of 66 posts. In your response to Sandra, you said the following:
"So now, a little over a month after the break, I am walking pretty good when the arthritis/inflammation from the letrozole isn't too bad; seems to depend alot on the weather. I thank God I can walk and that I can read all the good things about this drug, which makes the suffering worth it. I do wonder about tweaking the dosage, as I have read about how the results were the same for women taking much smaller doses and at different intervals. I toyed with the idea, but told hubby I would rather follow doctor's orders because there must be a reason they decided on 2.5 mg daily and I don't want to mess up my chances of survival; afterall, WE ARE WARRIORS are we not? "
It seems to me that, if you find your current approach to your treatment is not working, that it might be helpful to review your thinking (as I quoted above, bolding added) of three years ago.
You also might consider rereading the research you read three years ago, and then ask a medical professional whether the sources of that research are currently viewed as legitimate.
Warmest of wishes for your continued health,
Cindy
my thinking changed when I couldn't use my hands.
I'm struggling with joint pain on letrozole. I've been trying different brands but if anything the pain is getting worse. I told my oncologist this over the phone a few weeks back and he said when I see him again mid January we can look at trying something else. I will be happy to share with you what the alternative is.
I am almost 5 years (in April 2022) on letrozole and Ibrance. Joint pain in my hands has developed over the past 3 years. I am recuperating from a thumb joint replacement in September. It is a side effect of letrozole but I would not want to go off or decrease a drug that is helping me to survive longer.
There are many alternatives to letrozole. Some do better on exemestane, or the letrozole brand name of Femara, or even on anastrozole. Fulvestrant is a great alternative--it works differently than the AI's and blocks the E-receptor itself. There is a lot of research being done by a group called "The Right Dose"--info about how the trials pick the 2.5 mg dose. They only try it on 6 people, and expect all the rest of us to need the same amount. They did some research and presented it at ASCO, and now the FDA has decided to do trials on a variety of dosage levels. Check them out at therightdose.org. It is also known that as we age, our livers and kidneys do not process drugs as well, and we may get toxic levels of the drugs. Here is an article on lower dosing of letrozole. Best to you! ncbi.nlm.nih.gov/pmc/articl...
HI Sandra--What do you think of this article? Have you read about the research group "The Right Dose"? Their website is therightdose.org. Best to you. Kay ncbi.nlm.nih.gov/pmc/articl...
Oh, Godbeforeme,We all want you to live as long as possible. The truth is we have stage 4 cancer and the drugs that give us more time are harsh but we are thankful for something that lets us have more time with family and friends. The answer may be to talk with your oncologist about something to combat the worse side effects. Drugs affect us differently and you may need help with side effects or a different drug. We want you to stay with us. It is way too soon for you to leave. If I remember correctly, you live near a major cancer center, I am sure you could find an oncologist there that is right for you. Have a blessed Christmas. Blessings, Hannah
I want to echo what others have said! And I don't know if Celebrex, a med used for arthritis , would help you or other metsters, but I had been on 200mg in the morning for several years pre MBC and never had the joint pain others report. Once when I had to go off the celebrex for several days before a test or procedure, I got achy joints until I could go bsck on the celebrex. I got almost five years from Letrozole, and then over 9 years from Faslodex and am closing in on 18 years with MBC. I've had bone mets only until about 16 months ago and now had my first radiation, for tiny mets on my brain in Sept and now more planned for some spots near my right arm pit. Those have put alot of pressure on the nerves and blood flow into my right arm and hand. Hand is not totally nonfunctional but I can't type normally and have alot of other problems. Good luck in finding tretment that works and that you are at peace about!
I think that the AI's have a very toxic effect. My SE's on letrozole were mostly mental--acute brain fog, anger and rage, paranoia. 11 days after I stopped it, this huge veil lifted off my head--and my brain was clear. Even friends noticed a difference--I was more present, capable of rational conversation. This could not have happened if the only SE was blocked estrogen--it would have taken a whole lot longer for the symptoms to clear. When I was on anastrozole my joint pain was so bad--I called them and said I cannot live like this. Mental problems also--living in a fog and memory loss. Those personal experiences led me to believe the AI"s are very toxic--I did not try exemestane. I am getting some 2nd opinions to see if I can find anyone that knows more about this, and would love any information anyone has. Numerous MBC women on FB have also mentioned the anger and rage SE of letrozole. It is known that older women do not process the drugs via liver and kidneys as well, and the drugs can reach toxic levels. I am 75 y.o. and "mono" metastatic--so I can possibly go without meds for awhile at least! My other choice is to sit around like a dementia patient and do nothing. That is not living. Best to you!
Thanks Sandra. Best to you! Most do not have extreme side effects from Letrozole, but 50% do have side effects. I am so sorry that an oncologist would allow a pt. to have thumb surgery when there are so many other drugs to try. I am assuming that you work in oncology!? --since you mention knowing thousands on letrozole. This disease is a difficult journey--but if we do not complain and report these drug side effects, no one will ever conduct studies to make change's. And we should not demean the complaints that others have. Let's hope for a better future--if not for us, for those that follow. Kay
Hmm interesting discussion. My AI gave me incredibly painful carpal tunnel syndrome which was helped by steroid injection then completely resolved by surgery. It also gave me the finger joint pain. But on the bright side it kept the cancer suppressed for nearly 3 years. (I've had to change to fulvestrant and palbo now). My thoughts are: 1) noone knows more about oncology than oncologists, 2) noone knows more about what is important to you than you. If you can find an oncologist that can consider your case with your goals in mind, that will be hugely helpful to you. Good luck from sunny Aotearoa New Zealand!
Oooh, Aotearoa! I miss those summer Christmases but do love the candlelit fireside Christmases of Europe. Don’t get sunburnt 😉
Just to add to this discussion that when I changed meds in July (from Letrozole and Palbociclib) my joint pain, particularly in my hands and knees, disappeared. Small win but I’ll take it.
Thank you Sandra for your reply to Godbeforeme. I am confused about why she doesn't want to have a relationship with her oncologist. If she doesn't trust him or her, she could get a second and third opinion, where she might feel more comfortable with one of those docs.Also, I'd like to point out to her, that there is controversy about how important and accurate the tumor marker tests are. My oncologist doesn't even like giving them unless I stomp my feet.
Ibrance, Letrozole and Tumor Marker “flare” after beginning treatment?
Switching from Letrozole to Fulvestrant, markers going up fast, any advice?
IBRANCE/LETROZOLE CELL COUNTS
Tumor markers 
