Femara/Letrozole

SUNGRANNY · July 2014

Hello Ut sisters,

I've been off the boards for awhile - away, then had company, not feeling well, etc. It is good to catch up. I'm impressed with the knowledge and experience women share here with each other.

Is anyone familiar with using Femara/letrozole or another aromatase Inhibitor for advanced stage estrogen positive uterine cancer?

review and update:66 yes old. total hysterectomy 11/2012, diagnosed StageIV, with UPSC, had chemo & radiation to shrink lymph nodes remaining& shrink/eliminate remaining cancer cells. 12/2013 CT scan showed paraaortic lymph still looked good, & no further evidence of cancer. CA-125 was in the teens. Had 3 month check up in March. I reported abdominal discomfort, constipation, pain after urinating at times. Was told that these were probably radiation side effects.

June 2014 felt hard area upper abdomen. CT Scan showed cancer scattered throughout abdominal area - omentum, peritoneum, on large intestine and bowel,iliac lymph nodes, etc. CA-125 3,141 Stage 4B metastatic diagnosis. June 30 th, Offered more chemo with 50% chance it might shrink the cancer for a time, but declined as I still have neuropathy, and didn't feel I could handle that getting worse. Scan also showed scarring Ureter, causing some kidney inflammation, (side effect from radiation), partial spinal fracture from radiation after effects. Apparently the bowel problems are in part due to radiation after effects, as well as the cancer impeding proper functioning of digestive system. Onc team recommended a low fiber diet and to drink64 oz water daily, miralax to keep bowels functioning, and reglan to reduce digestive discomfort and aid peristaltic action. At this point the biggest issues are to avoid a bowel obstruction and control pain. Most of the pain occurs when I lay down - pressure I'm the abdominal area and on !my back.

Last week the Gyn-Onc contacted me that they tested the tumor, and it has estrogen and progesterone positive receptors. I was surprised, as when I asked last year I was told it probably wasn't estrogen positive, as it was Her2 negative, and UPSC generally not estrogen positive. Onc is recommending Femara/Letrozole. This is an oral aromatase inhibitor, generally given as adjuvant therapy for estrogen pos breast cancer, after all treatments. Dr won't say anything as to stats, as she says this is not a common situation and there haven't been studies. They have used it before with some success. She said the main side effect was hot flashes, but women on the breast cancer boards report problems with joint and muscle pain and stiffness. She would go by my report of symptom changes, tolerance for side effects, and test in 3 months with CA 125 & possibly a scan.

I would like to hear if anyone else has had experience with using Femara.

As to complementary treatments I use acupuncture, I meditate, use visualization, and am investigating some other possible treatments. . The Onc team knows that I have stro g feelings at this point in my life that quality is more important than quantity, that I do not want anymore aggressive or invasive treatments, and that I would be content with symptom management for however long I would have.

Thanks in advance for any input,

Sara

ConnieSW · July 2014

Oh, Sara

I can't answer your question but I had to write and tell you how upset I am for you. You have brought such compassion, comfort and kindness to folks on these boards with your thoughtful comments and advice. I want to say more but am just at a loss.

i hope your grandchild lives near you and this treatment offers you the gift of time to make more memories. That is my main priority. I treasure all the time I had with my dear grandparents.

HellieC · July 2014

I used Letrozole (Femara)

Hi Sara

I used letrozole for about 14 months. I have pelvic recurrence, but it is just one mass on the left pelvic sidewall, so not operable. It was successful in shrinking the mass by about 50% and held it there for 14 months. Then is started to grow again and I was switched to progesterone which didn't work (even though my tumour is both oestrogen and progesterone responsive). I am now on Tamoxifen, but can't comment on it's effect yet as I've only been on it for 4 weeks.

I tolerated the letrozole quite well. A few joint aches, but nothing bad and hot flushes. If it was still working, I would have stayed on it for ever! I think hormone therapies are much kinder on your body than chemo and would always opt to try them first.

Hope it works for you.
Kindest wishes
Helen

Ro10 · July 2014

Sara

Sorry to hear you are having such problems. I tried Arimidex before my third round of chemo, but I did not have success with it. My doctor thought the cancer was too aggressive when I started it. I was only on it for several months, and then needed to go back on chemo. I only had a 7 month chemo break then and my marker went to 3200.

after that third round of 6 chemo treatments I started on Aromasin which is also an Aromatase inhibitor. I have been on it for over 2 years. It seems to be slowing my cancer growth. My CA 125 has risen more slowly than previously. My latest CAT scan showed only one enlarged lymph node when I usually have 4 or more other enlarged nodes. I have had a 26 month chemo break, but my CA125 is 1582. The doctors continue to tell me it is just a number.

my doctor in Florida gave me the option to switch to Letrozole to see if it would slow the growth better. I did not want to switch since I have so many allergies and I felt the Aromasin was working for me. He was okay with continuing it. Tamoxifin is another drug that is used,but it increases the risk of blood clots. I have a history of bilateral blood clots inmy lungs, so that was not an option for me.

the side effects I have noticed were increased joint pain, thinning of hair (enough that I wear a hat when I go out), and hot flashes. The side effects are more tolerable than those of chemo. I think it is much easier on the body, too.

i am hoping I can either have that node removed, or have it reduced in size with cyber knife radiation. The node is anterior to the trachea, so I don't know if I am a candidate for either surgery or radiation. Hope to know in a couple of weeks.

good luck in making your decision. It sounds like Helen has had success with Letrozole. In peace and caring.

SUNGRANNY · August 2014

Thanks Ro and others

Dear Ro,

Thank you for your supportive and informative response. I am thinking of you in light of Jan's passing, sending thoughts and prayers of comfort and peace.

To all my other Uterine sisters who responded, thank you for your support and caring. It is heartwarming.

I am taking Femara, so far the joint pain isn't too bad, although I had one distressing episod when I had vaginal bleeding (on a Saturday night no less!) for 6 hours. Apparently it's a rare side effect of Femara.

I am also following an alternative protocol to help relieve my symptoms and shrink the cancer.

So far the biggest issue is the abdominal discomfort (VERY frequent bathroom trips, most non-productive :-( ) and back pain when I lay down which makes sleep challenging. I do have pain medicine which I just take at night.

I was offered a referral to Hospice, which I've accepted. Eventhough I am doing pretty well and can get around and do self-care without assistance, Hospice is a good resource as I can call any time and not have to be referred to the Emergency Dept.

On a humorous note, I got a summons for Jury Duty. Unless they have a bathroom in the courtroom, and someone to poke me awake if I have to take pain meds to sit all day, it isn't workable. My doc wrote a nice letter for me.

Cyberhugs to all my Ute cancer sisters,

Sungranny

Ro10 · August 2014

SUNGRANNY said:
Thanks Ro and others
Dear Ro,

Thank you for your supportive and informative response. I am thinking of you in light of Jan's passing, sending thoughts and prayers of comfort and peace.

To all my other Uterine sisters who responded, thank you for your support and caring. It is heartwarming.

I am taking Femara, so far the joint pain isn't too bad, although I had one distressing episod when I had vaginal bleeding (on a Saturday night no less!) for 6 hours. Apparently it's a rare side effect of Femara.

I am also following an alternative protocol to help relieve my symptoms and shrink the cancer.

So far the biggest issue is the abdominal discomfort (VERY frequent bathroom trips, most non-productive :-( ) and back pain when I lay down which makes sleep challenging. I do have pain medicine which I just take at night.

I was offered a referral to Hospice, which I've accepted. Eventhough I am doing pretty well and can get around and do self-care without assistance, Hospice is a good resource as I can call any time and not have to be referred to the Emergency Dept.

On a humorous note, I got a summons for Jury Duty. Unless they have a bathroom in the courtroom, and someone to poke me awake if I have to take pain meds to sit all day, it isn't workable. My doc wrote a nice letter for me.

Cyberhugs to all my Ute cancer sisters,

Sungranny

Sungranny

Glad to hear you accepted the referral to Hospice. They maybe able to help you with your abd and back pain. Do you have a recliner to try to sleep in. You might be able to get comfortable in it. I hope that the Femara works for you. The joint pain does get better,but I still have it. When I first started on the Arimason and told the doctor I had joint pain, he said" Good, that means it is working". I hope that means that for you, too.

Thank you for the thoughts and prayers I appreciate them. I hope that Jan's family have comfort and peace, too. I hope you will have a good week. In peace and caring.

ConnieSW · August 2014

Ro10 said:
Sungranny
Glad to hear you accepted the referral to Hospice. They maybe able to help you with your abd and back pain. Do you have a recliner to try to sleep in. You might be able to get comfortable in it. I hope that the Femara works for you. The joint pain does get better,but I still have it. When I first started on the Arimason and told the doctor I had joint pain, he said" Good, that means it is working". I hope that means that for you, too.

Thank you for the thoughts and prayers I appreciate them. I hope that Jan's family have comfort and peace, too. I hope you will have a good week. In peace and caring.

Sungranny

I second Ro's suggestion to try sleeping in a recliner if you already haven't. I had many patients who never slept in a bed. Not being able to sleep makes dealing with everything else worse.

i am keeping you in my thoughts. Thank goodness for Hospice

Goldheart · August 2014

Why Letrozole?

Hello, I don't understand why Letrozole can be effective for UPSC. UPSC is not caused by estrogen horomns but it is caused by damaged cells. The aim of taking Letrozole is to reduce the amount of estrogen in the body. Letrozole is mainly used for ER+ Breast Cancer patients. ??????

Ro10 · August 2014

Goldheart said:
Why Letrozole?
Hello, I don't understand why Letrozole can be effective for UPSC. UPSC is not caused by estrogen horomns but it is caused by damaged cells. The aim of taking Letrozole is to reduce the amount of estrogen in the body. Letrozole is mainly used for ER+ Breast Cancer patients. ??????

I don't think they know why it works

I just know the Aromatase inhibitor has worked for me. You are right that it originally was used for breast cancer.. Just glad it is working for uterine cancer, too.

Cathy99362 · September 2014

Letrozole

I used Letrozole for a year, but did progress rapidly. Stage 1b to 4 in just 11 months. Now on Abraxane and Avastin.

ConnieSW · September 2014

Cathy99362 said:
Letrozole
I used Letrozole for a year, but did progress rapidly. Stage 1b to 4 in just 11 months. Now on Abraxane and Avastin.

Cathy

That is really awful and scary. I see you have had the standard treatments. Do they have any idea why you progressed so rapidly?

For want of a better word, welcome to this group. I'm thinking we should coin a word that better describes being welcomed by a group when you wish you didn't need to go there.

Femara/Letrozole

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