Hi Oakwood and Gezza and everyone, 

i was on tamoxifen for 5 years before changing recently to exemestane 3 months ago.  I was initially alright on it, but in the past 3 weeks have had swelling in my fingers. In the daytime its not too bad but at night time my fingers are numb and have pins and  needles. The pain has also started in the evenings from the top of my finger tips. I've started taking neurofen at night time when its really bad. But I keep waking up with the numbness 4-5 times a night and naturally making finger exercises to feel some sensation again. I bought and started using mentol muscle/joint pain creme to distract myself from the pain. I'm all about trying turmeric blends in juice too, but find that they are something good to do just in case, to make me feel i am trying something to help.

I spoke to my GP about the numbness and they took some bloods to rule out arthritis and it was all good apart from the lower white bloodcell count. The GP adviced to get in touch with  the oncology department and I did. But unfortunately they seem very busy and just recording that I have symptoms and asking to wait for the next telephone appointment  which is a month away! The oncology department nurse said i should call the GP again to check what is happening. Its like a ping pong game unfortunately. 
So yesterday I took myself of the medicine to check for a week if there's any change. I guess it takes the medicine a while to come out from the system. My plan is to call the oncology department again on Monday to say I plan to be off them for a week to see if the swelling and pain subsides and also see if I can carry on with tamoxifen. at least with tamoxifen the joint pain was managable for me. This might be a viable option as i am artificially put through menopause at the moment. There's  so many things to weigh out, and depending on what kind of quality of life you want as well as what kind of pain you can handle and live with. 
I see some  ladies mentioning two different drugs: Anastrozole and letrozole...what is your experience on them and side effects?

many thanks and best wishes to all

Hi ladies. Thank God I found this topic. I too am on exemestate have been for 9 months. Started of ok then I noticed I was having a full on hot flush. No creeping up. My face would literally go bright red for a few minutes then I would be drenched in sweat. Next was burning in my hands and feet  got so bad it woke me from drugged sleep with the pain. Now I have pain below my thumbs around the wrist, had x-ray to be told wear ànd tear then started having pain around my knee. It was at my neices wedding where I could hardly stand or walk that made me leave the reception just after dinner. I went to the hospital the following day they did a full check up just Incase my cancer had spread to the bones which thankfully was told they looked ok. The  tendons and joints each side of my knee   after being checked again by another doc , was told had some damage to them. They said that the amount of hormone therapy meds I was on could be a big factor and to see about getting them changed. (I'm also on zoladex injections every 4 weeks along with the bone strengthener every 6 months).  They also said to ask my GP to send me to the Ortho clinic to see if they could help as they could order a CT scan and so on.  

I'm waiting on my 1st telephone consult  with my oncologist since my  chemo and radiotherapy ended  nearly a year ago.

I'm just fed up feeling like an old woman I turned 50 in September there not 90.  Hope to get to the bottom of this as I am in constant pain 

To the lady who asked if there's any help for her as she can't keep working. You can apply for pip , ESA. Ask to speak to a macmillan nurse  who specializes in helping with the benefits available.  Best of luck and keep up the good fight. X

I've been on exemestane (and 2 monthly prostap Injections) for 10 months now and about 2 months ago I started with really bad muscular back problems (bottom and/or top) and also muscular pain under my left rib and shoulder.... 2 weeks ago in A&E they said this was costochondritis.  Sometimes the pains are like really sharp nerve pain.  It's really been getting me down because I don't seem to get a day off. I am a single Mum to a 2 and a half year old who often wants picking up and I just feel like I'm failing and a rubbish Mum.  I can only put everything down to medication but I can't seem to find anyone having similar problems to me. It's affecting my work because I've had to have several days off sick now because pain has been too bad.   I've contacted my oncologist today to see if I can have a medication review but I'm scared to change because of other side effects.  Does anyone have any suggestions?

Hi Holliead and welcome to Cancer Chat.

I'm sorry about the troubles you've been having with your medication and for how this has left you feeling.

I hope things went well when you discussed this with your oncologist last week but if there is anything playing on your mind or something that you forgot to ask then you can talk things through with one of our cancer nurses on 0808 800 4040, Monday - Friday between 9a.m - 5p.m.

I do hope some of our members on this thread get back to you, but if not then you're very welcome to start a new discussion. 

Kind regards,

Steph, Cancer Chat Moderator

I had two lumpectomies, one in 2016 on the left side and a second unrelated on the right side in 2019.  The first time I had Tamoxifen prescribed and had all the usual side effects: hot flushes night and day to the point where I couldn't function, nausea,  brain fog and depression.  I saw a private GP as I needed an OH report for work and he suggested Venlafaxine.  This helped the flushes settle and the anti-depressant effect was helpful too.  After the second lumpectomy I tested to be post menopausal so was prescribed Letrozole which affected joints, especially fingers, wrists and back.  They switched me to Anastrozol which was the same and finally Exemestane which was the last one they could try.  At first I thought it had improved the joint pain but this year its accompanied by stiffness in all joints.  As someone else has said, it's at its worst on waking or after sitting for more than half an hour.  Often I can hardly walk when getting out of bed or a car or bend my legs to get downstairs.  Now I've noticed a weakness in the strength of my hands and regular sharp shooting pains in my hands through to my fingers and thumbs.  There is also a slight trembling in my hands.  I am hoping this increase in side effects doesn't spread to the rest of my body.  Does anyone know if it gets worse the longer you take it or does it just get to a stage where it stabilises, thank you for reading.

Hi there, 

Looking at your post today and just wondered if you ever found anything to ease the pain? I am in exactly the same position as you and would really like some advice on how to manage the pain.  It's crippling and affecting my life so much 

thanks 

Amanda

Hi Amanda, 

I noticed you were hoping to find out if Bumblealong found anything to help with the pain.

Unfortunately, the last time they were on the forum was in July 2020 so there's a chance you may not get a reply.

I really hope that won't be the case, but if you don't hear back, you could try reaching out to others on more active/recent discussions you find about this on the forum. You're also welcome to give our team of cancer nurses a call on 0808 800 4040, Monday - Friday between 9a.m - 5p.m. They are very supportive and will do all they can to help.

I'm sorry this pain is having such a big impact. I can't imagine how difficult it must be to live with this at the moment but I, and the rest of the Cancer Chat community will have our fingers crossed you can find a way to make this more manageable.

Kind regards,

Steph, Cancer Chat Moderator