Hormone therapy-comparisons

debsweb18
debsweb18 Member Posts: 191 Member
in Breast Cancer #1
I saw my MO today about persistent shoulder pain. He thinks it's may be a frozen shoulder but ordered an MRI before sending me to a PT. I last saw him 6 weeks ago and he changed me to Femara from Arimidex because of the side effects. So during the visit he asked about it. I told him they subsided at first after changing, but now they're about the same. He said he could put me on Tamoxifen. I asked about the side effects. He brought up uterine cancer, but said it was rare. He also brought up blood clots (and said Arimidex had the same). Since my grandmother had a blood clot and then bled to death from blood thinner, he's doing blood work to see my risk of blood clots. There's also Aromasin, but he said most people have more fatigue. Since I wake up exhausted all the time, he's doing additional blood work for that and taking me off Femara for a week to see if my fatigue improves.

After reading the previous post (couldn't find it tonight) about Arimidex and blood clots, makes me feel good about my MO being cautious about it.

I can deal with the discomfort side effects (joint pain, headaches, etc) of the meds if I have to because it's keeping cancer from coming back.

Finally, here's my questions:

For those that have been on 2 or more of these 4 drugs, any experiences or knowledge you can share with me about the differences? I know everyone reacts differently, but I'd like a compilation of information before going back next week comparing the drugs.

Does anyone know if the joint pain is temporary, or is it actually causing damage to the joints?

Has anyone had excruciating pain on the TOP of their feet where heat is the only thing that helps? I've always had feet cramping problems, but this is new in the last year.

I appreciate any help!!!

Deb

Comments

  • Different Ballgame
    Different Ballgame Member Posts: 868
    #2
    Various Information
    Dear Deb:

    1. If you go on Tamoxifen, get an ultra sound of your uterus so you have a baseline. In some (few) people...not everyone...it could cause uterine cancer. It is important to see your gynecologist periodically while you are taking Tamoxifen. Very, very, very rare Tamoxifen can affect your vision. It can create weight gain unless you are diligent in exercising and watching your diet.

    2. Arimidex attacked my weak points. Four months on Arimidex It created pain in right heel so that I went for physical therapy after taking a MRI. Six months on Arimidex it created neuropathy in both hands...had a brain scan, x-rays of neck, nerve test, and saw spine specialist. As a process of elimination for the cause of the neuropathy, I stopped taking Arimidex. The neuropathy today in the hands....on a scale of 1 to 10 is a 1. It created a rash on my torso, back, and then spread to arms which was activated in the seventh a month of being on Arimidex. The rash became wild and inflamed and continued to spread over the areas mentioned. Stopped taking Arimdiex after being on it for 7 months. It also attacked the joints in my knees so the point that a 98 year old woman with a cane walked faster than I did.

    3. Femara...side effects started 2 weeks after being on it. Stayed on it only for 28 days.

    Please note that there are people who take these drugs who are lucky in that they have very slight side effects or none at all. The drugs react differently with everyone. Some are luckier than others.

    Good luck.

    Lots of Hugs,
    Janelle
  • eihtak
    eihtak Member Posts: 1,473 Member
    #3
    Arimidex...
    It is soooo true that everyone reacts differently to these drugs. I have only been on Anastrozole 6 months (generic for Arimidex), and tho I had bone/joint pain and constant hot flashes the first couple of months, my body seems to be adjusting now. I exercise daily and limit my caffine, and have little side effects anymore. I did read that the chance of blood clots is a bit less with Arimidex than Tamoxifen, but don't know the per cent of difference right now???? I am very fortunate at this point. I will pray that you find a med that works as well for you.
  • Rague
    Rague Member Posts: 3,653 Member
    #4
    I've only been on
    I've only been on Femara/letrozole so can't compare with other AI's. For me there have basicaly been no SEs that can absolutely blamed on it. I have gained no weight (in fact have lost quite a bit that I didn't really need to) and no hot flashes at all (but then I never had any when I went through natural menopause 22 years ago). There are a few 'things' that might be related to it at least somewhat but definately not proveable. Since DX/TX, I have gone from osteopenia to osteoporosis - not surprising as I've been osteopenia for MANY years, have a strong family history on both side of family; also had relatively early meno (44) and did not do HRT (really glad now that I didn't) and am 3 yrs out of DX so no way to know for sure IF/WHAT Femara has contributed to that. Have more pain in upper back but again is it the Femara or just getting older? I've had arthritis (probably caused by repeated riding injuries YEARS ago) in upper back for at least 17 yrs as shown on X-rays - it has progressed since DX but for the most part is handled by daily Etodolac. I developed cataracts after being on it for close to 2 yrs. Different Drs have said different things as to rather or not that might be a SE. Most agree it might be but all agree that I would have eventually have developed cataracts if I lived long enough as I have very light eyes (green - born with very dark brown but had lightened to green by late teens and have gotten lighter over the years) and have always been an outdoor person - so who knows.

    Foot/leg cramps can be a sign of low K (potassium) or imbalance of potassium, magnesium and/or zinc. Since about 1/2 way through Taxol, I've had a problem keeping potassium levels up to normal. I take a large dose of K daily but still have to occasionally take more when more active than normal. Foot/ankle cramping tells me - get up and take an extra K and it will resovle relatively quick. Do NOT just decide to take extra K as it can cause problems with too much without talking to your Dr but wouldn't hurt to ask. Also ask for blood work to see how you're doing on magnesium and zinc and ratios.

    Winyan - The Power Within

    Susan
  • SIROD
    SIROD Member Posts: 2,194 Member
    #5
    Four Hormonal Drugs for over 17 1/2 years!
    I have been on Tamoxifen, Arimidex, Faslodex (250 mg) Femara, stop the drug, allowed cancer to progress (SABC Symposium Dr. Ellis 2008) restarted Femara, progressed and retried Faslodex (500 mg) stable.

    Tamoxifen, I used four years. It didn't work at all as I had 3 bouts of arm cellulitis before finding the tumor in the axilla. A plumbing problem, bacteria enters from paper cut, backup due to tumor blocking lymph = cellulitis. I did have endometrium thickening from the start, later began to bleed (already been through chemical menopause). They labelled it endometrial hyperplasia. Had a D&C and since I was on Arimidex, never caused me another problem. I had mild hot flashes and weight gain.

    Arimidex - began this drug when it was still new. A minor fall caused 3 vertebra fractures. Vaginal dryness. Recommended by gynecologist, approved by my oncologist to use the product "Estring" (prescription to help with vaginal dryness)

    Femara - Mild hot flashes, weight gain, bone & joint pain, vaginal dryness. I did mini breaks to figure out what was osteoarthritis and what was Femara. I never figured out the whole story until a few weeks ago. I had shoulder pain, spine pain, knee and ankle pain. I did have a full tear in the supraspinatus tendon in the rotator cuff and chronic bursitis in my shoulder. I do have osteoarthritis in my spine and other bones, knees, ankle and feet. I have posterior tibial tendonitis dysfunction (pttd) in my right ankle and wear a brace and do see a podiatrist.

    When my knees began to hurts and I could hardly bend them, I saw an orthopedic surgeon and was told I had bone spurs behind the kneecaps. The pain was nearly unbearable. I used Voltaren Gel 5 times a day (prescription) to help with the inflammation. I used lidocaine patches on my ankles.

    I could barely walk and it continue to progress. I did wonder if I would end up in a wheel chair. It hurt so much when I stood after sitting from 5 minutes to 2 hours, that I felt like crying. It didn't matter how long, every time, I moved my knees the pain was horrible. People noticed my face as I got up. Airlines gave me a seat where I could stretch my legs and have an easier time rising. Told me to use First Class bathrooms. They noticed my pain and changed my seat. I didn't ask them to do it.

    A few weeks ago, after being off Femara since last March, the pain stopped. I have no problems walking, or rising. I don't use the gel anymore. It is like a miracle but I believe that Femara finally leached out of my body. What little pain I do have is the bone spurs and osteoarthritis. It is nothing like I had for 2 years.

    Faslodex - I had little problems on 250 mg but I did progress on it after 7 months.

    Faslodex - 500 mg I had problem with the booster shots for about 6 months. I no longer have the nausea, vomiting, overwhelming fatigue. I have some fatigue but my last shot didn't give me all the earlier symptoms. It is working - 2 ct scans showed stable after 15 months of progression and the last with some regression. I am satisfied with it and hope it buys me a lot of time.

    I think of the amount of time now with hormonal drugs as "buying time". I have used them for over 17 1/2 years. I am ever so grateful to whoever invented them. I have a slow growing cancer and it responds to hormonal therapy drugs. Chemotherapy is for fast dividing cells which mine are not. I doubt that chemo is in my future.

    I hope this help you. I am saving Aromasin and Afinitor for later. At this time, it is to close to Femara and Arimidex to be successful for me.

    Good luck.

    Doris
  • debsweb18
    debsweb18 Member Posts: 191 Member
    #6
    SIROD said:

    Four Hormonal Drugs for over 17 1/2 years!
    I have been on Tamoxifen, Arimidex, Faslodex (250 mg) Femara, stop the drug, allowed cancer to progress (SABC Symposium Dr. Ellis 2008) restarted Femara, progressed and retried Faslodex (500 mg) stable.

    Tamoxifen, I used four years. It didn't work at all as I had 3 bouts of arm cellulitis before finding the tumor in the axilla. A plumbing problem, bacteria enters from paper cut, backup due to tumor blocking lymph = cellulitis. I did have endometrium thickening from the start, later began to bleed (already been through chemical menopause). They labelled it endometrial hyperplasia. Had a D&C and since I was on Arimidex, never caused me another problem. I had mild hot flashes and weight gain.

    Arimidex - began this drug when it was still new. A minor fall caused 3 vertebra fractures. Vaginal dryness. Recommended by gynecologist, approved by my oncologist to use the product "Estring" (prescription to help with vaginal dryness)

    Femara - Mild hot flashes, weight gain, bone & joint pain, vaginal dryness. I did mini breaks to figure out what was osteoarthritis and what was Femara. I never figured out the whole story until a few weeks ago. I had shoulder pain, spine pain, knee and ankle pain. I did have a full tear in the supraspinatus tendon in the rotator cuff and chronic bursitis in my shoulder. I do have osteoarthritis in my spine and other bones, knees, ankle and feet. I have posterior tibial tendonitis dysfunction (pttd) in my right ankle and wear a brace and do see a podiatrist.

    When my knees began to hurts and I could hardly bend them, I saw an orthopedic surgeon and was told I had bone spurs behind the kneecaps. The pain was nearly unbearable. I used Voltaren Gel 5 times a day (prescription) to help with the inflammation. I used lidocaine patches on my ankles.

    I could barely walk and it continue to progress. I did wonder if I would end up in a wheel chair. It hurt so much when I stood after sitting from 5 minutes to 2 hours, that I felt like crying. It didn't matter how long, every time, I moved my knees the pain was horrible. People noticed my face as I got up. Airlines gave me a seat where I could stretch my legs and have an easier time rising. Told me to use First Class bathrooms. They noticed my pain and changed my seat. I didn't ask them to do it.

    A few weeks ago, after being off Femara since last March, the pain stopped. I have no problems walking, or rising. I don't use the gel anymore. It is like a miracle but I believe that Femara finally leached out of my body. What little pain I do have is the bone spurs and osteoarthritis. It is nothing like I had for 2 years.

    Faslodex - I had little problems on 250 mg but I did progress on it after 7 months.

    Faslodex - 500 mg I had problem with the booster shots for about 6 months. I no longer have the nausea, vomiting, overwhelming fatigue. I have some fatigue but my last shot didn't give me all the earlier symptoms. It is working - 2 ct scans showed stable after 15 months of progression and the last with some regression. I am satisfied with it and hope it buys me a lot of time.

    I think of the amount of time now with hormonal drugs as "buying time". I have used them for over 17 1/2 years. I am ever so grateful to whoever invented them. I have a slow growing cancer and it responds to hormonal therapy drugs. Chemotherapy is for fast dividing cells which mine are not. I doubt that chemo is in my future.

    I hope this help you. I am saving Aromasin and Afinitor for later. At this time, it is to close to Femara and Arimidex to be successful for me.

    Good luck.

    Doris

    Thanks everyone for the info!
    It's all very helpful.

    Janelle- I certainly don't need more vision problems. I don't have to worry about cataracts because I had them removed 10 years ago. But I don't have great vision. I also have the heel pain. I've had plantar faciitis sp? before, but it's flared up pretty badly lately. I was wondering if the AI was the reason.

    Susan- I also have had osteoarthritis in my neck and hands for many years. My neck's not bothering me. It's the hips that bother me most now, but not before. I also lost of few pounds after starting Arimidex, but struggling to keep it down with Femara. No hot flashes (lucky us!).

    Doris- It sounds like maybe the joint pain is not permanent or mean we're being "damaged". That's hopeful!

    Thanks again for all the information!

    Deb

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