Aromatase Inhibitors

HapB

Hi, I will be going on an AI next month and I am not sure which one. Does anyone have experience they would share?  Thanks.

Teach76

Armidex and Femara

I was first put on Armidex.  I developed a constant sore throat and voice change (Scratchy and strained).  It took me 2 months and scoping from both ENT and Radiation Oncologist to convince my Medical oncologist to let me go off the Armidex for 2 weeks to see if it was the cause.  I went back on and within several days the sore throat was back.  He kept insisting that they never had a patient experience that side effect, but I was never shy about being first!

i have been on Femara ( Letrozole) for 8 months now.  Some joint pain now and then - not sure if SE or just age now.

As with any new Rx, pay attention to changes.  Some you may be able to accept, some you may not, and as always, everyone's experience can be different.

Congratulations on reaching this new chapter!

Kathy

Apaugh

Armidex here

I have that sore throat that Kathy is talking about and I know it has to be the Als because I never had many sore throats ever.  When I did I could drink some hot tea and it would be gone.  Now it is not.  At this point it is too soon for me to know any other side effects because I just finished the herceptin treatments 3 wks ago. 

Keeping you in my prayers,

Annie

Teach76

Apaugh said:

Armidex here

I have that sore throat that Kathy is talking about and I know it has to be the Als because I never had many sore throats ever.  When I did I could drink some hot tea and it would be gone.  Now it is not.  At this point it is too soon for me to know any other side effects because I just finished the herceptin treatments 3 wks ago. 

Keeping you in my prayers,

Annie

Keep notes on that sore

Keep notes on that sore throat, Annie.  At first docs tried to tell me it was acid reflux - but I was already on meds for that.  Then I was sent to an ENT.  She saw redness, but no infection or reason for it.  At the RO he did his own scope - same conversation as with ENT.  If you do not find that it could be allergies or a cold, try to do what I did - go off for about 2 weeks ( check with docs first). It is a documented SE, but some are not willing to accept the connection.  Being in tune with what you experience enables you to advocate for yourself.  I found that ending treatment I was not "heard" as well.  Keep addressing your issues.

i have had terrible fatigue ( one year out of active treatment )   I report it to every doc at every appt.  They have no reason for it, and will not agree that it may be a late effect that is still lingering.  I wish I could just pop in one of their offices when it is 3pm and I am falling asleep at the drive-thru.

This new normal is different for everyone.  I kept being told during treatment that each patient reacts differently, but now I am supposed to fit into the mold.

Thank you for mentioning your sore throat on Armidex.  Now I really know I was just not imagining it!

peace and prayers,

Kathy

 

HapB

Armidex

Kathy and Annie, thanks for the input. Kathy, I totally understand the feeling of not being heard and not being believed. It is so frustrating and it makes me angry. We know our bodies and i just really think that sometimes doctors don't want to know the side effects. It is disturbing, to say the least that nobody keeps track of the side effects of drugs once they are approved by the FDA.  it makes me wonder how many drugs cause more harm than benefit. There is not way to really get that information. 

I think my MO is considering Armidex for the first try on an AI. We'll see how it goes. I guess that I won't know until I try. 

 

Mariangel43

AIs

I have been on AIs for a 14 months.  The first one was anastrozole which gave me a little of throat soreness (not too much to worry about) and which I asked to be suspended because the CAs were increasing in spite of the antioxidant therapy and the anastrozole.  The MO changed me to Femara (letrozole) and in less than a month I had acute pain in my joints and knees.  I had an Xray that confirmed calcification of my tendons.  In some unfortunate way the Femara has accelerated arthritis processes and the orthopedist and the MO are ignoring it and neglecting as unimportant.  I am mad at them.  I always had a diet low in uric acid and substances that could enhance arthritis cause I am allergic to aspirin and derivatives.  I am also allergic to cortisone and derivatives. So my options to stop this ailment is almost non existent.  Other side effects were low but constant hair loss, a continuous vaginal discharge, weight gain, exhaustion and pain.

Hope this information helps you.  Luck!

HapB

Mariangel43 said:

AIs

I have been on AIs for a 14 months.  The first one was anastrozole which gave me a little of throat soreness (not too much to worry about) and which I asked to be suspended because the CAs were increasing in spite of the antioxidant therapy and the anastrozole.  The MO changed me to Femara (letrozole) and in less than a month I had acute pain in my joints and knees.  I had an Xray that confirmed calcification of my tendons.  In some unfortunate way the Femara has accelerated arthritis processes and the orthopedist and the MO are ignoring it and neglecting as unimportant.  I am mad at them.  I always had a diet low in uric acid and substances that could enhance arthritis cause I am allergic to aspirin and derivatives.  I am also allergic to cortisone and derivatives. So my options to stop this ailment is almost non existent.  Other side effects were low but constant hair loss, a continuous vaginal discharge, weight gain, exhaustion and pain.

Hope this information helps you.  Luck!

Mariangel

Thanks for the reply.  What are the "CA's"?  I don't blame you for being frustrated! 

Kats2

HapB said:

Armidex

Kathy and Annie, thanks for the input. Kathy, I totally understand the feeling of not being heard and not being believed. It is so frustrating and it makes me angry. We know our bodies and i just really think that sometimes doctors don't want to know the side effects. It is disturbing, to say the least that nobody keeps track of the side effects of drugs once they are approved by the FDA.  it makes me wonder how many drugs cause more harm than benefit. There is not way to really get that information. 

I think my MO is considering Armidex for the first try on an AI. We'll see how it goes. I guess that I won't know until I try. 

 

Arimidex

Hi HapB,

I was put on Arimidex for 1 1/2 yrs. My tumor markers were never monitored  nor any bloodwork done on me, nor any scans done. I never knew that the Arimidex wasn't working for me. As a result I had a recurrence of my BC.

Arimidex agreed with me. No side effects.

My advice if you go on any AI is to make sure that your bloodwork is monitored on a regular basis and that you get necessary scans. Keep on top of things. Ask your Oncologist about this.

How can we know if a drug is or is not working if our blood isn't tested? Or a scan done? Don't let that happen. I wish I had known that. My old Oncologist just waited to see if some adverse symptom showed up. Not good. In my case the adverse symptom was metastasis to my bones.  Good luck!  Kats2

atjn

Armidex or Tamoxifen

I am also very interested in feedback that the community may have.  I started out on Tamoxifen, and after about nine months of taking it, had to have a hysterectomy due to endometrial cancer.  My oncologist's NP says that I am only the second patient in her career to get endometrial cancer on Tamoxifen, but i can't help but associate the two since EC is a possible side effect of Tamoxifen.  I stopped taking it for the past few months since my hysterectomy, but they would like me to go back on either Tamoxifen or Armidex (which I am now able to take due to the hysterectomy).  I landed here trying to get information about patient experience on Armidex.    I can't decide if I should go with the "devil I know" in Tamoxifen, since I've already experienced the worst possible side effect for that, or try the Armidex in hopes that I have a better experience.   

HapB

Kats2 said:

Arimidex

Hi HapB,

I was put on Arimidex for 1 1/2 yrs. My tumor markers were never monitored  nor any bloodwork done on me, nor any scans done. I never knew that the Arimidex wasn't working for me. As a result I had a recurrence of my BC.

Arimidex agreed with me. No side effects.

My advice if you go on any AI is to make sure that your bloodwork is monitored on a regular basis and that you get necessary scans. Keep on top of things. Ask your Oncologist about this.

How can we know if a drug is or is not working if our blood isn't tested? Or a scan done? Don't let that happen. I wish I had known that. My old Oncologist just waited to see if some adverse symptom showed up. Not good. In my case the adverse symptom was metastasis to my bones.  Good luck!  Kats2

Kats

I am sorry that you had a recurrence. I wonder whether you would have had a recurrence on any of the other AI's? It is a very good question about how the doctors know whether any of the treatments are working. I don't think they know at all whether the chemo, radiation, or hormone therapy is working. I did ask my doctor about surveillance and I was told they don't do scans unless there are symptoms. It is discouraging, to say the least. 

 

booksandnumbers

monitoring

I've been taking arimidex for almost a year now. Reading previous posts I feel really lucky that my doctors keep on top of things. I have mammograms and bloodtests every 3 months. During my last mammogram something unusual showed so an ultrasound followed. Since that still didn't explain things it was decided to go back in and remove the "shady" area. All this happenend within 4 days of the mammogram. It means the world that I didn't have to spend weeks worrying about it. I wish everyone had a team that won't take any chances and truly believes in "better safe than sorry".

HapB

Monitoring

hi Booksandnumbers, doesn't having mammograms every 3 months expose us to an awful lot of radiation? Is this the standard of care? 

booksandnumbers

HapB said:

Monitoring

hi Booksandnumbers, doesn't having mammograms every 3 months expose us to an awful lot of radiation? Is this the standard of care? 

Only the left side is checked

Only the left side is checked every 3 months. Pretty soon it will change to once every 6 months, then back to bilateral once a year. I have no idea if that's standard or not. You're right, it is a lot of radiation but it also gives piece of mind. I guess that's something.