Forum Discussion
Shakalker
6 years agoMember
Trigger fingers, Wrists clicking and painful, Pain in feet,-Letrazole?
Hello everyone,
I hope you are all as well as can be.
I am now 4 months into Letrazole.
I hope you are all as well as can be.
I am now 4 months into Letrazole.
About 8 weeks I noticed my middle finger on both hands was becoming very stiff and clicking when I woke up in the morning, this has progressively got worse, my physiotherapist has recommended buddy taping to my ring finger on both hands “till the inflammation in my tendons subsides”
I have two problem with this.
1 After doing this to immobilise the joint my finger is not able to bend - I need it to work properly
2 I believe while ever I’m taking Letrazole the inflammation is not going to subside, it seems to be quite the opposite.
Now my wrists have joined the party, most movements up and down are painful or sideways like picking up a cup to drink they are sore and click.
I have two problem with this.
1 After doing this to immobilise the joint my finger is not able to bend - I need it to work properly
2 I believe while ever I’m taking Letrazole the inflammation is not going to subside, it seems to be quite the opposite.
Now my wrists have joined the party, most movements up and down are painful or sideways like picking up a cup to drink they are sore and click.
Elbows, shoulder, knees and feet are also involved.
I noticed some of you have said that your discomfort settled after a while. My discomfort is building daily now and I don’t get to see my oncologist till early December, I think I will be a total wreck.
I do have an appointment with my GP on Monday for an updated referral to the surgeon on Tuesday who is going to remove the PortaCath, can either one of these change my meds?
Has anyone here opted to not take the hormone treatment?
I noticed some of you have said that your discomfort settled after a while. My discomfort is building daily now and I don’t get to see my oncologist till early December, I think I will be a total wreck.
I do have an appointment with my GP on Monday for an updated referral to the surgeon on Tuesday who is going to remove the PortaCath, can either one of these change my meds?
Has anyone here opted to not take the hormone treatment?
Does anyone know what the numbers are in favour of continuing with it?
Thanks for your time.
Thanks for your time.
11 Replies
- kmakmMember@Shakalker Removing all the estrogen from your system makes you dry. One of estrogen's actions is to make our mucous membranes moist and lubricated. That includes your respiratory system and your digestive system. I am much drier now than I've ever been in my life. I've always drunk a lot of water (when I was a child my mother used to say I had hollow legs!), but I have to drink even more now, especially in the first eight hours after taking Letrozole. My skin, always oily, is now dry. My heels are SO much more difficult to manage they're that dry. I used to only have to use a pumice stone on them in the summer. Now it's all year round and they're cracking for the first time. My bowel movements are more difficult, etc etc etc.
I'm not medical, but it seems logical to me that the problems you're having with your mouth could be caused by or exacerbated by the AI. I would drop your oncologist or breast care nurse an email asking for suggestions. Or if you have a good GP, go and see them. Increase your fluid intake and keep moisturising.
You gotta be tough to do BC treatment. On they're own each of these annoying side effects are minor to middling irritations, but add them all up and they can significantly alter the quality of your life.
Keep your eyes on the prize, a cancer free life. K xox - ArtferretMember@Shakalker
I found that immobilizing fingers made it worse as it stiffened them up even more. You need to move them. I hate to say this but the inflammation in the tendons will not subside completely. It may ease but it won't go away and that also depends on how much physical activity your body is doing on a day to day basis. For example, i did an hour's worth of weeding in my garden yesterday. Today my hands are swollen and very sore. It will take the rest of the week for them to calm down. I mainly use heat or ice and when it gets really bad Rocktape. (A flexible strapping tape)
Ask your physio about using Rocktape as a support for the worst areas. You will still be able to use those areas that are taped. There is also a waterproof version of it too. Rocktape also has a good website for showing you how to tape the affected parts of your body.
The finger knuckle clicking does calm down, for me it took around 6 months.
In regards to dry lips and mouth area, i don't know how much water you drink each day but increase it and maybe think about adding an electrolyte to it like hydralyte. I found i needed to drink more since starting letrozole (i have been on it for 2 years) as i was constantly thirsty particularly after a high activity day eg gym, gardening, racing round like a mad thing!
Being on an AI and experiencing these side effects is all about finding ways to manage the pain and discomfort that work for you. There is no, one quick fix, unfortunately.
Best wishes, Cath - ShakalkerMember@kmakm I am having a real problem with my lips and the corners of my mouth, corners are split and have eczema and lips feel rough and peeling. I have NEVER had a problem like this before, it has been going on for about 4 weeks. I have used so many moisturisers but none seem to fix it. Could this also be related.
I have been trying to figure out what I’m eating that’s doing it 🥴 - ShakalkerMember@kmakm thank you
- kmakmMember@Shakalker Here's the side effects list from the APO Letrozole pdf my oncologist gave me:
- ShakalkerMember@arpie thanks for this.
I will print it off and take it with me 👍🏻
😘 - arpieMember@Shakalker
Print off this side effects chart and take it with you ...... you are NOT the only one feeling these extreme side effects
The DOTS are the original side effects on the chart
The X's have been added at the request of BCNA members
You will need to explain this to your Onc. I find it hard to believe that no-one else has raised the issue of side effects with him that he had to google it! I'd also be tempted to ask how long he has been practising as an Onc!!
It also explains how the different tablets work - and give the 'alternate' names of prescribed meds - ShakalkerMemberThanks ladies for your replies.
My oncologist googled side effects for Letrozole the last time I was in his office, In fact he went onto the Ontario Oncology site.
He also insisted I keep going with Docetaxel chemo treatments when other oncologists said stop.
I have little confidence in him but don’t have many options here in Tamworth, so he is it. 🤨
I will see if I can get in to see him any sooner.
Best wishes to you all xx - arpieMemberHi @Shakalker
i had trigger finger on both hands and incredibly sore thumbs, starting out on Letrozole, then Exemestane. After starting Arimidex it seemed to lessen, but have noticed my left hand going stiff again in the last month but not as sore, specially first thing in the morning. My feet have been giving me grief tho.
You really need to discuss this with your Onc as your surgeon and GP wouldn’t be fully knowledgable on the meds. Only the Onc may be able to advise a break or a change in meds.
all the best xxx - primekMemberYou need to see your specialist and discuss if an alternative AI might have less issues for you. Whilst some stiffness improves I think if you are getting trigger finger it's important to have discussions earlier and not assume a different medication will not be better for you.