Aromatase inhibitor and tendonitis/tendinopathy

Tamlen

Hi everyone. My uterine cancer is ER+ and I've been on exemestane since completing chemo in September 2018. I was initially on anastrozole and was switched to exemstane in an attempt to address joint pain from the drug.

The AI has always given me quite a bit of pain in my joints, particularly feet, knees and hips. I can say with certainty it's the AI because when I went off it for a month, with my onc's permission, in order to take a hiking trip to Europe, all the joint pain resolved. It came back a few weeks after I went back on the exemestane.

I'm very active (daily mountain hikes, rowing, etc) but unable to run anymore due to the pain in my feet. Activity does seem to lessen the joint pain because it keeps the surrounding muscles strong.

Now I have a new problem: Tendon pain. Last year sometime I started feeling like my tendons were "tight" all the time. Regular stretching and yoga made no lasting difference. About two months ago, I started having pain running from my thumbs into my lower arm. Then I had trouble gripping anything (like unscrewing a jar lid) without real pain. My wrists started to get swollen and my hands started getting numb at night if I didn't keep my wrist straight. I wondered if I was developing carpal tunnel syndrome but something was also clearly wrong with the tendon running from my thumbs in both hands. By last week, I almost couldn't use my thumbs at all. I've had a bit of relief in my thumbs and wrists from acupuncture.

This week, I've started having similar tendon pain running from the big toes on each foot up the foot and into the ankle. It seems unlikely that this is coincidental. A visit with Dr. Google tells me that there is a known association between AIs and tedonitis/tendinopathy and tendon rupture (yikes!). It's not very common.

I want to stay on the AI because it may be keeping cancer at bay -- I've had no evidence of disease since finishing firstline treatment (I'm Stage IVB). I know I could take a month off again to test if it's the AI, but I'm not sure tendonitis will resolve that quickly. I also know that when I raise this with my onc, she will say, "Well, you can go off it if you need to," because that's what she said when I felt crippled by the initial joint pain that got a bit better with time and exercise.

So, long explanation to get to these questions:

1. Have any of you had significant tendon problems as a result of being on an aromatase inhibitor? If so, what did you do and did it resolve?

2. I worry that I may have to go off the AI if the tendon problem gets progressively worse and essentially cripples me. That would feel like a ticking time bomb for me. For those of you with advanced stage cancer who went on an AI and then discontinued due to pain, what treatments did your onc substitute?

3. Any advice for me?

I'm trying to be proactive about this and think through options before raising this with my gyn onc.

Thanks!

Tamlen

MAbound

Leap of Faith

You and I share a lot in common with our cancers: both adenocarcinoma; yours grade 1 (more normal cells than cancerous) and mine grade 3 (mostly cancerous with high risk of recurrence). Yours is a more advanced stage (4B vs 3a/c). My original onc had me on Megace rather than an AI, supposedly for the rest of my life, but when I moved my new onc at Dana Farber took me off it. He also stopped doing CAT scans and checking my A1C. Different doctors/different philosophies of practice.

Mentally, it was very scary to make those changes because they were my security blankets giving me peace of mind that I was safer from recurrence, so I was willing to put up with downsides. It was a leap of faith after 18 months of NED for me to let them go to see if I could remain NED. So far, so good. My 5 year anniversary for finishing chemo comes up Aug. 30 this year. 

What you are facing is a quality of life issue. There is a possibility that you've been cured and the AIs are just added insurance or overkill, depending on how you want to look at it. AIs prevent adrenal glands from producing estrogen and low estrogen plays a role in the joint pain side effect. The Megace I was on blocked hormone receptor sites so it didn't change the amount of estrogen my body naturally makes post hysterectomy. No joint pain, but weight gain (stimulates fat cell production) and harder to control bp and bs are the downsides.

As I see it, your options are:

1.) seek other medical opinions regarding need to stay on AI or trying other options

2.) take a leap of faith and stop AI for a while with close monitoring to see what happens

3.) try something else: a different AI or Megace

4.) Try Taking Control's healing your body approach. I think you already do a lot of that and perhaps, if nothing else, it will help you to feel like you are continuing to do everything you can for yourself if you opt to try dropping the AIs.

5.) Stay the course you are on as long as you remain NED

None of these choices are easy. The anxiety you'd have to deal with will be strong and prolonged and that's nothing to dismiss when making a decision. It would be easier if the way forward was clearer, but that never seems to be the case for any of us in our battle with the beast. This is just my 2 cents worth and personal experience for you to chew on. I hope it all works out for you whatever you choose to do.

 

 

Tamlen

MAbound said:

Leap of Faith

You and I share a lot in common with our cancers: both adenocarcinoma; yours grade 1 (more normal cells than cancerous) and mine grade 3 (mostly cancerous with high risk of recurrence). Yours is a more advanced stage (4B vs 3a/c). My original onc had me on Megace rather than an AI, supposedly for the rest of my life, but when I moved my new onc at Dana Farber took me off it. He also stopped doing CAT scans and checking my A1C. Different doctors/different philosophies of practice.

Mentally, it was very scary to make those changes because they were my security blankets giving me peace of mind that I was safer from recurrence, so I was willing to put up with downsides. It was a leap of faith after 18 months of NED for me to let them go to see if I could remain NED. So far, so good. My 5 year anniversary for finishing chemo comes up Aug. 30 this year. 

What you are facing is a quality of life issue. There is a possibility that you've been cured and the AIs are just added insurance or overkill, depending on how you want to look at it. AIs prevent adrenal glands from producing estrogen and low estrogen plays a role in the joint pain side effect. The Megace I was on blocked hormone receptor sites so it didn't change the amount of estrogen my body naturally makes post hysterectomy. No joint pain, but weight gain (stimulates fat cell production) and harder to control bp and bs are the downsides.

As I see it, your options are:

1.) seek other medical opinions regarding need to stay on AI or trying other options

2.) take a leap of faith and stop AI for a while with close monitoring to see what happens

3.) try something else: a different AI or Megace

4.) Try Taking Control's healing your body approach. I think you already do a lot of that and perhaps, if nothing else, it will help you to feel like you are continuing to do everything you can for yourself if you opt to try dropping the AIs.

5.) Stay the course you are on as long as you remain NED

None of these choices are easy. The anxiety you'd have to deal with will be strong and prolonged and that's nothing to dismiss when making a decision. It would be easier if the way forward was clearer, but that never seems to be the case for any of us in our battle with the beast. This is just my 2 cents worth and personal experience for you to chew on. I hope it all works out for you whatever you choose to do.

 

 

Thanks, MAbound

Thanks for helping me think this through, MAbound. It is most definitely a quality vs (potentially) quantity of life issue, something most of us with advanced stage cancer will face eventually. My Farber onc does not consider Stage IVB adenocarcinoma curable; she believes I have quite a bit of time left if we manage it as a chronic disease. I have long lived a healthy vegetarian, whole foods (very little processed food), active life and since diagnosis have doubled-down on healing my body. I am not big on supplements (the literature, when you dive in, is pretty clear to me that supplements are of questionable value in many -- though not all -- situations).

I have discussed Megace with my gyn onc in the past and she felt strongly it would not be a good medication for me at this time, plus the weight gain (and the accompanying estrogen in fat).

I am curious about your Farber onc not doing CTs anymore. Do you get any scans? I am scanned every 6 months and am comfortable with this, given my stage, but am curious about what you wrote.

barnyardgal

I've been on Letrozole for

I've been on Letrozole for almost 3 years. I was 3a, grade 2. I've been fortunate to have no bone pain or other issues with it. The Dr did put me on Vitamin D, and said some studies have shown that this helps lessen or prevent bone pain. I'm not sure if that's why I haven't had bone pain or just got lucky with that. But it might be something to try anyway. The dr said she may take me off of it at 3 years, or wait another year or so.

Hope you feel better.

MAbound

Tamlen said:

Thanks, MAbound

Thanks for helping me think this through, MAbound. It is most definitely a quality vs (potentially) quantity of life issue, something most of us with advanced stage cancer will face eventually. My Farber onc does not consider Stage IVB adenocarcinoma curable; she believes I have quite a bit of time left if we manage it as a chronic disease. I have long lived a healthy vegetarian, whole foods (very little processed food), active life and since diagnosis have doubled-down on healing my body. I am not big on supplements (the literature, when you dive in, is pretty clear to me that supplements are of questionable value in many -- though not all -- situations).

I have discussed Megace with my gyn onc in the past and she felt strongly it would not be a good medication for me at this time, plus the weight gain (and the accompanying estrogen in fat).

I am curious about your Farber onc not doing CTs anymore. Do you get any scans? I am scanned every 6 months and am comfortable with this, given my stage, but am curious about what you wrote.

Scan Free for three years

I haven't had a scan, Xray, or CA-125 since March of 2018. I have been anxious this past year because of hip pain that has me using a cane and unable to drive. My onc knows, but it's likely due to an injury coinciding with repetitive excercises I was doing to strengthen my knee joints early last year. You can bet, though, that I have Pinky and Der Maus on my mind all of the time as I try to get this resolved. I may push for a CT before my onc sends me to the Survivor's Clinic after my 5 year check-up. I've been dealing with it for over a year now with no progression or spread of pain, so it probably really is an orthopedic issue. Still, it's hard sometimes to convince myself to hear horses instead of zebras. 

I'm with you on the supplements. Very picky about what I will or won't take. Nutrients are always best gotten from foods in conjunction with other nutrients. I can't think of a single food that provides just one concentrated nutrient by itself. They are usually better absorbed that way rather than when taken in isolation. They aren't all bad, though, you just need to know your own body and circumstances to customize what you take. 

SF73

Excellent suggestions so far.

Excellent suggestions so far. Hope you will hear from others as well. Like MABound I was on Megace for a year after the frontline treatment so I dont have much to offer in terms of personal experiences.

I was going to suggest checking breast cancer and ovarian cancer discussion boards since AI is more commonly used after frontline treatment.

Fridays Child

MAbound said:

Scan Free for three years

I haven't had a scan, Xray, or CA-125 since March of 2018. I have been anxious this past year because of hip pain that has me using a cane and unable to drive. My onc knows, but it's likely due to an injury coinciding with repetitive excercises I was doing to strengthen my knee joints early last year. You can bet, though, that I have Pinky and Der Maus on my mind all of the time as I try to get this resolved. I may push for a CT before my onc sends me to the Survivor's Clinic after my 5 year check-up. I've been dealing with it for over a year now with no progression or spread of pain, so it probably really is an orthopedic issue. Still, it's hard sometimes to convince myself to hear horses instead of zebras. 

I'm with you on the supplements. Very picky about what I will or won't take. Nutrients are always best gotten from foods in conjunction with other nutrients. I can't think of a single food that provides just one concentrated nutrient by itself. They are usually better absorbed that way rather than when taken in isolation. They aren't all bad, though, you just need to know your own body and circumstances to customize what you take. 

Hope you're right

MAbound, I hope you're correct that your hip pain is an orthopedic issue.  I had hip pain before my surgery in 2012.  Two years later I had a CT scan due to the hip pain, which was negative.  Although I continued to mention it, the doctors and I thought it was arthritis. It was intermittent and didn't seem to be worsening. We gave way too much power to that negative scan, in retrospect.  At the end of 2017, I saw my ortho who did an x-ray that didn't show anything, and he sent me for an MRI. That was how I found out I had a 7x6 cm mass which had invaded the hip joint.  A subsequent PET scan showed multiple mets in both lungs.

If it's orthopedic, that's great. (Doesn't that sound absurd?) The sooner you find out, the sooner you can relax.  But if it's not, the sooner you find out, the sooner you can do something about it.  I wish you horses!!

Tamlen

Thank you!

Thank you for all the replies and good, sound, helpful advice. I do already take Vitamin D at my onc's suggestion, though my acupuncturist just suggested I double the amount; I tend to have diarrhea if I take too much Vitamin D in supplement form, so I will proceed cautiously.

Good idea about the other boards, like breast cancer, where the use of AIs is more common.

I've actually had a dramatic improvement since my second acupuncture treatment. My thumbs are fully functional again, the tendon pain from my big toes is gone, and I only have mild discomfort from thumbs into wrists. My acupuncturist is particularly targeting joint and tendon pain (though in Chinese medicine they don't distinguish these) and it seems to be having a significant positive effect. It'll be interesting to see how it lasts once initial treatments are done, because my insurance doesn't cover acupuncture and so it's not something I can do regularly forever.

MAbound, I hope the hip pain proves to be nothing cancer-related and that you get an answer about that soon. Like you, I immediately think of folks like derMaus when someone mentions hip pain.

Fridays Child

Joint problems

Tamlen, after I finished chemo in 2018, they put me on letrozole, whick I took for about a year.  I already had problems with my hip due to the metastasis that damaged it.  I developed trigger finger in both thumbs and both ring fingers. I had surgery on three of them.  Following a steroid injection in my shoulder for rotator cuff issues, the fourth one (on the opposite hand) resolved almost immediately.  The doctor commented on how stiff the tendon sheaths were  in my fingers.  After a year they switched me to Megace.  I have had rotator cuff surgery on one shoulder and am trying to avoid having it on the other.

Like you, I find that activity is very helpful.  So far I haven't gained weight on Megace which I've been taking for about a year and a half, but it's hard work to keep from doing so.  My blood sugar has remained normal so far. I do remember seeing that some people said they gained about 10-15 pounds on Megace but stabilized there and didn't continue gaining.  I was also concerned about this due to the estrogen in fat cells, and my cancer is ER+ and PR+. 

Currently I'm having CT scans every six months, and it has remained stable since going on Megace, which makes it a little easier to put up with the side effects.