Exemestane and Joint/Muscle/Tendon Pain

MichelleGS

I know this subject has probably been done over and over but I am interested in finding out if anyone has had success with controlling severe pain caused by aromatase inhibitors.

I have had endometrial cancer and breast cancer.  Both primary cancers.  Both hormonally driven.  As a result I need to stay on HIs possibly for the rest of my life.  I'm 54.  This journey started when I was 49.

I did 14 months on Letrozole and 11 of them were pure hell.  The pain I felt was unrelenting.  It started in my hands but quickly moved to hips, knees, ankles, feet.   Standing was horrible.  Walking any distance impossible.  I tried:

Exercise - aqua aerobics and swimming
Tumeric
Duloxitine
Magnesium
Ibuprofen
Celebrex

My oncologist changed me to Exemestane and I have been on that since February this year after a 4 week break.  It is much better but I still have pain when I stand and walk and have developed issues with my Achilles tendon which is very painful.  I have dropped the Duloxitine and Tumeric (the pain didn't get worse because of this), still take 100mg of Celebrex morning and night.  Use Voltaren emugel and Magnesium (soluble) at night.  I take Vitamin D.

I have been going to a specialised gym that works with cancer patients and that has also helped but currently I am not going because of the Achilles problem.  I have seen a rheumatologist, a physiotherapist, exercise physiologist.

I really would like to find a pain medication that actually takes the pain away when I walk so I could walk and get back to the gym a some semblance of normality.

I have recently also stopped working, partly because of these issues.

So, any suggestions/ideas I can talk through with y medical team.

kmakm

I have quite high levels of pain from Letrozole. I see an osteopath every fortnight, get as many remedial massages as I can afford, do yoga and pilates, apply heat, take magnesium flakes baths, panadol osteo to take the edge off, and occasionally treat myself to a Targin. That knocks off most of the pain but never the ankle pain which is constant and bad.

I actually discussed pain medication with my GP last week, asking if there is something I could take all the time. However unfortunately the answer was no. They're either not good for you (anything with codeine), addictive, and/or less efficacious the more you take them. Tramadol is a no no for me because it doesn't mix well with the antidepressant I'm on. My GP is happy for me to treat myself to the occasional Targin, and my oncologist is happy for me to have a two month break from the AI after each 12 months of taking it. Nothing seems to make the remotest bit of difference to the stiffness and the hobbling. Best of luck, K xox

Sister

I am also on Letrozole and I'm always in pain and stiff from it - it's just the severity and prominence of the location that changes from day to day.  Sometimes exercise can help (particularly with the feet and legs), sometimes it makes it far worse.  I can't take ibuprofen and similar due to allergy.  I do take anything from panadol to panadeine forte to deal with it but as @kmakm says, codeine is problematic.  My oncologist prescribed me 7 days of prednisolone a few months ago and I have to say it was like a magic wand - the pain disappeared within 6 hours of the first dose.  It took a while to return fully after the course finished but I would have to say it is different now as prior to the prednisolone it was more constant.  However, as with AIs, prednisolone can have a severe impact on bone density so it cannot be an ongoing treatment.  My onc has agreed, a little reluctantly, that I can take a tablet again this year if I just can't deal with things.  I'm saving this up.

I'm not necessarily a believer, but I just heard that researchers in Adelaide are presenting their findings on the benefits of fish oil on inflammation caused by rheumatoid arthritis.  Now, I don't think that I have RA but it is inflammation that is causing my pain so I'm prepared to give it a go.  They use liquid fish oil (the brand that they have been associated with in the past is Melrose) and from what I can find out, the dose is 10-15 ml per day though that is from older research so may not be accurate.  Anyway, I started that yesterday so will keep my fingers crossed.

Afraser

That’s interesting research @Sister. I have been taking fish oil for years to alleviate my creaky knees (no pain though, nor any from taking letrozole later). To be honest though, two sessions at my new yoga class has done more for my knees recently than anything else. I’ll stick with both! 

MichelleGS

Sister said:

I am also on Letrozole and I'm always in pain and stiff from it - it's just the severity and prominence of the location that changes from day to day.  Sometimes exercise can help (particularly with the feet and legs), sometimes it makes it far worse.  I can't take ibuprofen and similar due to allergy.  I do take anything from panadol to panadeine forte to deal with it but as @kmakm says, codeine is problematic.  My oncologist prescribed me 7 days of prednisolone a few months ago and I have to say it was like a magic wand - the pain disappeared within 6 hours of the first dose.  It took a while to return fully after the course finished but I would have to say it is different now as prior to the prednisolone it was more constant.  However, as with AIs, prednisolone can have a severe impact on bone density so it cannot be an ongoing treatment.  My onc has agreed, a little reluctantly, that I can take a tablet again this year if I just can't deal with things.  I'm saving this up.

I'm not necessarily a believer, but I just heard that researchers in Adelaide are presenting their findings on the benefits of fish oil on inflammation caused by rheumatoid arthritis.  Now, I don't think that I have RA but it is inflammation that is causing my pain so I'm prepared to give it a go.  They use liquid fish oil (the brand that they have been associated with in the past is Melrose) and from what I can find out, the dose is 10-15 ml per day though that is from older research so may not be accurate.  Anyway, I started that yesterday so will keep my fingers crossed.

I have also tried high doses of fish oil but I don't think there was any significant difference.  I have invested in a magnesium pool at home and that helps a lot.  Haven't tried prednisolone - might chat to the Doctor about that.

Sister

I've heard prednisolone played down a lot and I can understand the reluctance to prescribe it but it was beyond incredible for me.  The problem of course, is that you can't stay on it.

I am hoping that the fish oil dies something (dose is equivalent to approximately 13 capsules) but I'll believe it when I feel it.

kmakm

I tried Krill Oil but it didn't make any difference to me. I think I'll circle back to it though. I'm a year further on, so maybe something might have changed.

Beryl C.

I took arimidex for four years, starting June 2011 and changed to anastrozole three years ago. I've been having Herceptin infusions for seven years - No.114 due this week. Physically things were ok until 2013, I.went to stand up one night and the pain in the soles of my feet was excruciating. I was able to continue working until late 2017 as there were good days and bad days, for the last two years the pain has been very bad most days and I use a walker. (I'd turned 70 so retirement was ok). I've tried about 10 different drugs including Celebrex, Lyrica, Endep, Targin, Palexia, and could fill the bath with supplements and oils. Tried acupuncture, massage sandals, Tens machine, epsom salts baths, hot and cold packs, Reiki etc -I have seen the pain Dr at my treatment hospital three times and when none of the drugs eased the pain he suggested their  two day Pain Management workshop, all very well done but for me the outcome was 'welcome to the new normal and make adjustments'. In summary nothing has made any difference! It has had an impact on my lifestyle. Early this year my GP gave me a prescription for a drug with codeine, I use this very sparingly for events I don't want to miss like a family birthday. As I also have aches and stiffness in various parts of my body, all unpredictable, I take 50mg of Voltaren just before I go to bed and during the day find Panadol Osteo takes the 'edge' off. I find Sketches are the best shoes and as my feet are small I can wear the largest child size and pay 50% less than adult size. I've done quite a bit of research on this although most of the evidence is anecdotal and I have not yet found anything that claims a reduction in pain attributed to aromatose inhibitors. This is a health condition that does need serious research.

Artferret

After 18 months on letrozole my body and me, finally cracked it and i requested a 2 month break. It took 6 weeks for all the aches and pains to go. I am at the gym 3 times a week, for nearly 2 years now, doing cardio and resistance training, i walk our dog everyday +2km and i see my osteo every month for an hour and believe me she needs the hour. I use ice, heat, massage with spiky balls, foam roller and my husband's hands! I use nurofen or panadeine sparingly when it gets too much but have to be careful with painkillers as they can effect my dodgy digestive system. I don't take any other supplements. I have a less is more principle and this seems to work for me at the moment. I also largely follow a low cholesterol diet.

I don't think there is anything that can truly help combat the side effects of the AIs it's more a matter of finding ways to cope that suit you best. There is no one method. Oestrogen has its finger in so many pies in our body particularly in the joint and muscle area. Lower it down it almost nothing...

It would be interesting for researchers to gather together a group of people who don't have these side effects whilst on an AI and try to find out why. Is it their metabolism, age, diet...who knows but i don't know that anything like this has been done. We are just expected to put up with it. 

Best of luck with finding ways to cope @MichelleGS

kmakm

@Beryl C. @Artferret I concur with both of you. With sadness. There seem to be so many people who suffer these dreadful side effects, but so little being done to alleviate them. Even the BCNA webinar I took part in earlier this year, failed to address these issues. I raised so many of the side effect issues with the two eminent experts, as I was requested to do, and they were completely ignored. Not one was answered.

My reading tells me that at the five year mark only 30% of people are still taking their AI. With a 70% drop out rate, you'd really think the medical community would be looking at ways to make taking these drugs easier.

I too now focus on managing the pain. It's expensive, debilitating and embarrassing. I'd get angry more often if I wasn't so fatigued...

Sister

• Apparently men drop out because the pain is too hard to live with but women drop out because we're not bright enough to understand the benefits - that's what I take from my reading about it. But of course, this is not the only health are where womens pain is disregarded.  I get that that there may be no answers at the moment but what there does seem to be is no recognition that anything needs to be addressed.  There's a bloody big elephant in the room and the "experts" seem to think it's a mouse.  (and I have no idea why this comment has decided to dotpoint itself)

MichelleGS

@kmakm I have watched that podcast and you were awesome! You absolutely nailed exactly how I feel about AIS, their side effects and the reaction of Doctors  when asking for help with the pain.  I refuse to give up my search for a solution and I also refuse to stop taking them given my history.  I could not stand psychologically to stop and then get a reoccurrence.  Even though I know that is small likelihood I would definitely blame myself if I didn’t stick it out.  I’m too young not to keep trying.  I have sent the link to that podcast to friends and family who say to me there must be something they can do.  It is also an opportunity for me to have them hear from someone else how horrible it is because like you I feel like a whinger and I kniw they just don’t understand how painful it is some days.  My ex-boss sure didn’t.  She told me I just needed to get over it!

iserbrown

I had an extra long visit with my Breast Surgeon of recent times and he asked about how I was going with the AIs as these are administered by my Oncologist.  I mentioned I was now on my third; briefly said why and that my body seems to have adjusted a little better.  His comment was regardless of which one you are prescribed you will suffer side effects and that in time the body does adjust.  It has been 4 years for me and the adjustment is happening.  Yes I know that is a long time to go before relief comes however hopefully for others it comes a lot sooner.  Now I just need to rid the bone pain in the legs which seems to heighten itself at night as I head into sleep!  This is the only side effect that bothers me now!

Take care and best wishes as you try to find the solution.

    

Sister

Unfortunately that is a reality of where we are.  No-one realises how devastating it can be but we do it in hope that we won't get a recurrence.  And yes, @kmakm was magnificent!  

An easy update on my liquid fish oil experiment...  It's only been a few days so I'm not getting excited yet as it may just be a normal lull in proceedings but I do think there has been an improvement particularly in the lower half of my body, tailbone down.  My hands (where the arthritis symptoms have really set in are a bit better but still tender).  I've been taking 15ml at around 6am - the pain starts creeping back in the evening but quite possibly I'm being more active during the day.  I have found myself stepping it out at work ( as opposed to shuffling) and I was able to get down to floor level and up again yesterday without too much palaver.  It may just be in my head, but as my daughter says, who cares if it's working?  I will continue with this regimen and see how it goes.  I may mix up the dosing at a later stage if need be to try that.  And yes - it does taste unpleasant.  I throw it to the back of my throat and then duck on a sugar- free mint afterwards!  Anyway, here is what I'm taking.  It cost $13-14 from the supermarket and is the one commissioned by the professor associated with the group who are releasing the paper.

Sister

I suck not duck!  Interesting auto-correct.

arpie

Will follow your new Fish Oil with interest, @sister (maybe using a straw to suck it to the back of your throat .... it worked with my recent pico prep experience!) ...Sadly krill and FO (hmm, have another saying for that!  LOL) capsules do nothing for me.  Yes, the side effects is the HUGE elephant in the room ... and I’ve read of quite high level dropouts in the early months of treatment, some not even reaching 12 months.  Here’s an interesting read - relative to patient’s ‘expectations’ of the expected side effects.  I had no ‘real expectations’ - I was quite prepared to wait and see if I was the lucky one that had none ..... 
https://www.sciencedaily.com/releases/2016/08/160822215239.htm

@MichelleGS ... I was on Letrozole from mid last year and only lasted 6 weeks, the aches and pains were so great.  I already had arthritis pain, so it more than doubled it, particularly in my hips, hands and feet.  Then I was on Exemestane for 6 months and now on Arimidex which has been the best so far - tho recently my feet have been killing me. On all the meds, I was taking pain killers and anti inflams during the day and temase for night

I also had a go with Prednisolone in Feb, as my fingers weren’t working and I needed them for a major ukulele performance, And as @sister said ... the change was just brilliant, but sadly not sustainable long term.  

I have been using some ‘special oil’ for some months now and have not been needing the meds other than the occasional temase maybe once a fortnight (2/3 times a week before.) It is only my feet playing up just now.  

All the best for your ongoing treatment xx