Letrozole/Femara V Anastrozole

[Timtam56]

Hi all.

Having a terrible time here with my hands. Everything else re: cancer treatment is going so well. But i have Either Osteoporosis, or Carpal Tunnel/Trigger thumbs, which may or may not be cause by Femara.

Has anyone else had this problem?

At first it was jus my right hand that hurt a bit at the thumb joint near the palm soft pad. Then it went to the joint nearer the nail. Then that started to lock if I bent it. Now its locked open. I can’t bend it, as, if I do, I have to use my other hand to open it up again, and it feels like I’m breaking bone to do it. Now the same this is happening to the left thumb as well. I have been without he use of my thumbs now for 8 weeks.

I’m being sent to a hand specialist, But in this time of covid, it’s all taking so long. What with phone appointments replacing face to face appointments!

I’m just off the phone to my Oncologist, and she said that Letrozole maybe exacerbating the problem. So she wants to change me over to Anastrozole for a few months to see how we go.

Anyone else had any of these problems?

Chris.❤️

[Kateds]

Hi Chris, I have had a lot of hand and joint issues since being on Ibrance and femara. The hands bothered me a great deal at first so I bought some gloves that leave your fingers exposed, but support the rest of your hand with a wonderful flexible fabric that is stronger than support hose. It also has a Velcro wrap around the wrist. I am a printmaker and painter so they come in very handy( pun intended) when my hands get stressed. They are sold at the pharmacy and at the grocery. After a couple of years on femara the hand pain subsided. The other joints have not improved. I've been through acupuncture, physical therapy and even an epidural. I wish you the best. If you do decide to change AI's is love to hear if it makes a difference. Good luck, friend.

Kate from Alabama

[Timtam56 in reply to Kateds]

Oh Kate.

And fellow artist! I’m a musician/composer. So playing guitar or cello are out the window. Thank god for music programs and. Soft touch keyboard. Gosh. You must find it difficult using your hands for art!

Thank you for your reply.

I’m in such great pain all the time now..... just in my hands. It has overtaken any cancer pain I had that’s for sure.

So at present I’m trying.....

Cod liver oil🤢

Hands soaks in hot water and magnesium flakes

Warm infrared hand massager, (I live alone, so can’t do it myself, and have no one to help with al things around the house!)

And I do wear splints, or wrapping for those gloves. But I find I have to tape both thumb joints incase they move to the locked position. So sounds a bit more advanced at the actual site, than yours.

But have just spoken with the mbc nurses at my cancer hospital. I’m going to go for some counselling, only because I think the counselling wil help keep me/them in the loop as to how I’m coping on my own with this issue.

My main fear is that because I live alone, I’m going to have to move in with my daughter and her dad, 😢☹️😞😩, as I may not be able to do stuff as easily soon! Nooooooooooo! That’s so scary! I left him for a reason!

Anyway. I will end my rant there!

Chris

🤞

[Julie2233]

I didn’t have that specific problem but I had a month on letrazole and it gave me horrible joint pain everywhere. The oncologist said that it was a common side effect. The pain stopped within 12 hrs of stopping the drug.

[Hidden]

Hi Chris,

I can relate to your hand issues, as I have had the same thing happen to me too. I think it's down to letrozole. The first time it happened was the day after I started taking letrozole. I had just taken a bath and when I got out, my right hand completely seized up. I was so scared I was having a stroke and that the rest of my body would also start going numb. My husband called an ambulance. The paramedics came and ran some tests, but they could find nothing wrong with me. My blood pressure, heart and everything else were functioning normally. But it was a very scary situation.

I was also suffering a lot from neuropathy in my hands. I would wake up with numb hands every morning for months. My oncologist did not seem concerned and she did not prescribe anything for it. But my integrative doctor ran some tests and found that my aldosterone, folate and vitamin B12 were all low. So I started taking licorice capsules and coenzyme B-Complex, which really helps. Can you ask your doctor for a blood test to see if you have any deficiencies? If you do, then you will have a clearer idea of what to do next and whether supplements or lifestyle changes might help with the problem. You should not have to put up with this.

Take care,

Sophie

[Timtam56 in reply to Hidden]

Thanks so much Sophie. Will do. I’m just beside myself.

When you came off Letrozole, what did you go on to?

[Hidden in reply to Timtam56]

Hi Chris,

You're welcome. I have been on my first line treatment (letrozole, zoladex, with zometa infusions) for two years so far. I hope you can soon get some relief from that horrible sensation. It is so unpleasant.

Sophie

[Timtam56 in reply to Hidden]

Thank you soph.

So My onc is going to see how this anatrozole goes. I’m a bit scared cause it says in side effects that it can cause nausea! I don’t know what would be worse if I had the choice of that or the hand issues! I’ll keep you all posted.

Chris.

[Hidden in reply to Timtam56]

Hi Chris,

Our oncologists have got to tell us about possible side effects, but I have discovered that it is unlikely to have all of the listed side effects. So hopefully you will not experience the nausea or maybe some of the other side effects.

Take care,

Sophie

[Paradise43 in reply to Hidden]

Dear Sophie, I’m having more numbness in my hands each morning. Like pins and needles when your foot falls asleep. But recently my arm was involved and my hand felt like it was burning. It was so hot I had to touch it. But it was normal to the touch. I felt a painful burning. Did you feel anything like that? Thanks

[Hidden in reply to Paradise43]

Hi,

I felt the pins and needles sort of numbness, but not a burning sensation. I would mention these symptoms to your oncologist and see what you find out.

Sophie

[Paradise43 in reply to Hidden]

Thank you. Appreciate the suggestion for the blood test too. Merci

[mariootsi]

Chris, I had the same problem with letrozole. Wore a splint which help and also went to a hand specialist for evaluation. It was a temporary condition and went away.

[Timtam56 in reply to mariootsi]

Ohhhhhh. Why didn’t I ask you all this question a month ago? Thank you so much mariootsi!

How long had you been on Letrozole before it happened? I’ve been on it for 2 years now.

[mariootsi in reply to Timtam56]

I was on it for about 2 years!

[Iwasborntodothis]

Yes! Both my thumbs lock up - like they are double jointed and bend both ways AND the joint on my palm hurts like crazy. I thought it was from spending too much time on my phone. I am so glad you shared and that I am not the only one with this problem. Also, I am allergic or sensitive to hand sanitizer and I have a horrible rash from all of this hand washing so I ordered some exzema gloves to wear from a company called Cara. I look forward to reading the responses to this.

[Timtam56 in reply to Iwasborntodothis]

Gosh!

Aren’t we lucky to have each other here?

What will you do about it iwasborntodothis?

I’m glad I shared too. I didn’t want to bother you all by posting my question, and have been going crazy with fear and anxiety. As I live alone, I was thinking that I might have to be out in an aged care facility at the rate of deterioration.

Thank you all so much.

[Iwasborntodothis in reply to Timtam56]

I have an appointment on Monday so I will see what Dr. Wendt says

[Iwasborntodothis in reply to Timtam56]

The Doc said today that the thumb joint pain is 100% from the Letrozole. He didn't offer any suggestions for relief...he wandered off onto other topics. He is a bit of an encyclopedia and I had more questions about my first Xgeva shot. So, bottom line, we are not going crazy the Letrozole is the culprit.

[Timtam56 in reply to Iwasborntodothis]

Wow! That’s interesting. So what has he suggested for you?

[Hidden]

Hi Chris, I’m also on Letrozole and Ibrance. I’m so glad you have mentioned this as at this moment in time I have my right hand strapped up due to pain in my thumb joint and up my arm. I don’t know where to put it sometimes. It swells up like a Popeyes arm some days. The left hand also locks and gets distorted but I’m able to free it up quite quick. My Oncologist is calling 1st July but I’m not sure how to explain all this. He is a lovely person but sometimes the language interpretation can be misunderstood. I would much rather see him. I hope you get on ok with sorting it out. Let me know. Best wishes

Cheryl

[Timtam56 in reply to Hidden]

Cheryl. This is not good that you have it so bad. Please keep me/us informed. 1 month seems so long to wait. How are you coping around the house?

[Hidden in reply to Timtam56]

I have a good husband that does most things. My hands don’t hurt all the time and I think because we have been going to our allotment planting out veg and watering has made them worse. I will let you all know what my Oncologist says (if I can get the symptoms across to him and understood). Have a good Sunday. Best wishes

[Hidden]

Hi Chris , I was on Letrozole for about 18 month and them Anastrozole for about 18 months , both caused joint issues for me , I was actually happy when they quit working and I was offered a new treatment plan . My hips , knees and ankles were so stiff and sore I could not bend over , walking was difficult , getting in & out of my vehicle was difficult and stairs were slow slow going and enough to make me almost cry . I was still working full time . I ate acetaminophen like candies.

I finally asked for a physio therapy referral and that really helped , plus they started new treatment ibrance & fulvesterant . I still have joint issues but not nearly as severe . I have now been on this treatment for about 18 months . My scans have been good .

I have to keep reminding myself to pursue and follow through with making this journey as gentle and pleasant as possible for me . If the oncologist dismisses some of my concerns with side effects ,I ask again next appointment , and the next and the next . I have learned that we paddle our own canoe on this journey . I realize I am a chart number to the medical team they are very knowledgeable but we must seek out what we need.

I have also used topical muscle relaxers when I have muscle spasms in my hands ,

I hope this gets resolved for you with a medication change , it must be extremely frustrating & painful.

Luann

[Timtam56 in reply to Hidden]

that sounds pretty full on for you Luann. Thank you so much that your clear picture of where you are and where you have been.

This problem with my hands is making me scared that I won’t be able to go on trips in my van alone (with my little puppy who arrives in two weeks.) around Australia.

Without two hands that work life is proving to be very difficult.

❤️

[Hidden in reply to Timtam56]

Please don’t give up there could be a something that will help ease the side effects. Our quality of life is so important .

What breed of puppy are you getting ? A pup will be a good motivator .

[Timtam56 in reply to Hidden]

I'm getting a moodle.

My daughter has one. I don't know if I've ever lived a do do much as her. Her name is Billie.

Mine is probably going to be called Stevie. After Stevie Nicks from Fleetwood Mac.

My daughter said today. "Mum. You just have to try not to worry and enjoy your little baby when she comes. Don't worry about anything and just go slow and love your new little baby."

So, I think that's what I have to remember.

What ever will be!

🐾😍

[Hidden in reply to Timtam56]

Oh I hope the medication change helps you so you can enjoy that puppy even more . I love the name .

Don’t give up on finding a solution to your discomfort . You are worth it ! And Stevie will need you . Fur babies are awesome

[Rhwright12]

Hope you’re hands feel better soon...😀💕

[Timtam56 in reply to Rhwright12]

I hope so too Rwright12.

[BluHydrangea]

Hoping some of these suggestions help bring you some relief soon.

[Timtam56 in reply to BluHydrangea]

Thanks very much.

[Godbeforme]

letrozole did the same thing to me; I had to half my dose, I cut them in half even though you're not supposed to, and it still hurts sometimes but at least I can use my hands again. past time to have bloodwork and bone scan done again, then I will know if my move was a wise one or if it made things worse. onc has dropped out of site after covid19, haven't heard from him, nor have I called because I'm staying away from the hospital until I feel safe from the virus, me and hubby decided to err on the side of caution. hope this helps! God bless you and heal us all in Jesus name, amen! <3 xo

[NPmary]

I would certainly switch meds if I were you. Hope you get improvement soon. It is terrible to not have functioning thumbs.

[Timtam56 in reply to NPmary]

Yes it is. Thanks. It’s so very scary.

[Kaylane123]

Hi Chris

I am on Femara(Letrozole) and I have the same problem with my left hand and thumb. I also have a lot of trouble with the musles and deep bones pain in my right leg. Some days is so uncomfortable to walk. I have been told to buy Tart Cherry Capsules which I ordered online and still waiting to arrive. My Oncologist wants me to keep taking Femara as it is working so good so guess I will put up with the pain for now. I did have a lot more pain when I first started Femara 2.5 years ago so it has eased in a lot of places.

[Timtam56 in reply to Kaylane123]

Oh thanks kaylane. I'll look yup those tart cherry capsules.