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Topic: FEMARA

Forum: Hormonal Therapy - Before, During, and After —

Risks and benefits, side effects, and costs of anti-estrogen medications. Note: Please remember that there are good experiences and bad with ALL treatments and this is a safe place to share YOUR experience, not to be influenced or influence others.

Posted on: Dec 31, 2008 01:22PM - edited Nov 15, 2017 02:04PM by Moderators

nanna wrote:

I STARTED TAKING FEMARA ABOUT 2 WKS AGO. WHEN DOES THE SIDE EFFECTS START TO KICK IN

Edited by Mods to add content from the main Breastcancer.org site on Femara: Benefits, Side Effects and More

Dx 6/27/2008, ILC, 1cm, Stage I, Grade 1, 0/1 nodes, HER2+
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Nov 7, 2020 07:32AM Annie60 wrote:

Does the every other day help with the side effects? I'm doing OK on it, but fatigue is a problem, depression and my hip really hurts most days.

That doesn't sound OK but it is so much better that I was on month 4-6.

Dx 8/28/2018, IDC, Right, 1cm, 1/3 nodes, ER+/PR+, HER2+ Dx 8/28/2018, DCIS/IDC, Right, 1cm, Stage IIIA, Grade 2, 2/3 nodes, ER+/PR+, HER2+ (DUAL) Radiation Therapy 5/29/2019 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 8/21/2019 Surgery Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy AC + T (Taxol)
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Nov 7, 2020 05:06PM arabiansrock wrote:

Thank you everyone, it sounds like I should try every other day. I said "I can split the pill" in front of my dr and he didn't say don't do that, but he also had that expression that said "oh no, another know it all patient who isn't going to follow directions" on his face. Don't get me wrong, he was very pleasant and willing to answer questions, but his expression said it all. I kind of got on a bandwagon about this whole one size fits all treatment dosage, everybody gets the same dose and how I think that is not good medicine so I may have offended him.


biopsy Jul13, 2020, dx lt idc grade 2 and DCIS. RT Radial Scar/sclerosing lesion. Aug 19, 2020 bilateral lumpectomy
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Nov 7, 2020 09:09PM KaraInLA wrote:

I’m hoping to get more information from anyone with more experience with side effects. I’ve been on Femara for just over 2 weeks, I’ve been having low level nausea most of the day every day, about every third day I have diarrhea, today it has been particularly bad, and starting yesterday I have lower back pain. I have been back to work full time for about a month, and have fatigue, but I’m guessing I’m just building my strength back. I’m exercising for about an hour most days, and these symptoms haven’t stopped that...I had a single mastectomy with autologous reconstruction 2 1/2 months ago, no infusion chemo this time. 13 years ago I had lumpectomy, infusion chemo, rads then 7 years of Lupron and Arimidex.


I know I’m being a bit hyper vigilant about my body, but I’m wondering, have you experienced these kinds of side effects so soon after starting? I have a great relationship with my MO and her team, but getting info from others who have gone before me carries a bit more weight. If you had these early side effects, did some (or all) of them resolve over time or shift? Any information would be helpful

Dx 3/2007, IDC, Left, Stage IIB, 0/3 nodes, ER+, HER2- Dx 6/2020, IDC, Left, 2cm, Stage IB, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 8/21/2020 Mastectomy: Left; Reconstruction (left): Stacked/hybrid GAP flap Hormonal Therapy
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Nov 7, 2020 11:45PM LillyIsHere wrote:

I was told by my doctor that fatigue is a typical complaint from letrozole users. I do feel my energy goes up and down during the day and I am not exercising as much as before. I guess it is something we will live with.

Annie, my hip ( and neck, elbow, knee) hurts as well and I went for a massage to someone who is specialized with cancer patients. She checked my hip and neck and said there is no problem with the joints but the muscles. She was a magic masseuse. Also, she recommended using a tennis ball and to use it for a massage at home. Annie, give it a try with a massage and you may feel better. Once we have the breast surgery, our body posture changes and some muscles get more tension than others. For me is difficult to figure out if it is joint pain or muscles around it.

KaraInLa, what time of the day do you take letrozole? One of our sisters recommended to take it at night time before bed and that's what I have been doing. At least I don't feel most of the side effects that come within the first few hours because I am sleeping. Just a thought, if you can move it to bedtime and see if you won't feel nauseous. Others may have other ideas or similar experiences. My MO told me it takes 4-5 months for the body to get used to letrozole. I think it takes longer than that. Maybe your body is recovering and having an hour of exercise + work every day may be too much. I hope it will get better soon.

Dx 7/31/2019, ILC, Left, <1cm, Stage IIA, 2/5 nodes, ER+/PR-, HER2- Surgery 9/19/2019 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 12/1/2019 Femara (letrozole)
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Nov 8, 2020 12:15PM JLBinPDX wrote:

Hi KarainLA. I was on Letrozole and experienced the same nausea until I diligently took it right after eating. That shift solved it for me. I wasn't happy with the weight gain and joint pain so I went off for a week or two and now have been on Arimidex for about six weeks. The main side effects seem worse, plus hair loss, on Arimidex. I'm now trying to figure out what to do next. I'm wondering half dose--one pill every other day--going back to Letrozole or on the third AI option, Exemestane (Aromasin).

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Nov 9, 2020 05:53PM KaraInLA wrote:

lilyIsHere and JLBInPDX, thanks for sharing. I spoke with my NP this morning and they want me just to stop and for us to reassess in a week, so now I wait to see what their advice will be on next steps

Dx 3/2007, IDC, Left, Stage IIB, 0/3 nodes, ER+, HER2- Dx 6/2020, IDC, Left, 2cm, Stage IB, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 8/21/2020 Mastectomy: Left; Reconstruction (left): Stacked/hybrid GAP flap Hormonal Therapy
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Nov 10, 2020 04:54PM Mountainlover wrote:

KarainLA, I have been on Letrozole for 3.5 months and the side effects have already changed. I had nausea, dizziness and a few hot flashes in my first couple of weeks, but they have since subsided. The same goes for insomnia. Now I am struggling with joint pains and the pain in my shoulders in particular wakes me up at night. Hair thinning is significant, too. I find that I feel better, at least as far as energy goes, if I take the pill at the same time of the day. When I am very late, or occasionaliy skip a dose because I forget, I seem to feel out of sorts. I hope the week off will help you!

Dx at 47, IDC/DCIS, tubular, multifocal Dx 6/10/2020, DCIS, Left, 1cm, Stage 0, Grade 1, 0/1 nodes, ER+/PR+, HER2- Dx 6/10/2020, IDC: Tubular, Left, <1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 7/13/2020 Mastectomy: Left; Reconstruction (left): Tissue expander placement Hormonal Therapy 7/23/2020 Femara (letrozole)
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Nov 10, 2020 05:21PM cm2020 wrote:

Mountainlover............I have been on it since late April (with 6 weeks off during radiation per my RO's order) and I have noticed the same thing with changing side effects. The hot flashes are the same unfortunately, man I hope they let up soon. I went through (and posted about it on the board) a few weeks of almost delibitating joint and general pain and stiffness. Yoga helped a ton. Now those SE seem to be gone mostly, as long as I work out and keep moving. The dizziness seems to come and go but doesn't happen often and I hope it goes away for good. I am consistent in taking it every morning. It is interesting that you are finding the same thing.

Dx 3/20/2020, IDC, Right, 1cm, Stage IA, Grade 1, ER+/PR+, HER2- (IHC) Dx 4/2/2020, IDC, Right, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 4/5/2020 Lumpectomy: Right; Lymph node removal: Sentinel Hormonal Therapy 4/25/2020 Femara (letrozole) Radiation Therapy 6/10/2020 Whole-breast: Breast, Lymph nodes
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Nov 11, 2020 12:37AM Francesca30 wrote:

I’ve been on letrozole for only a year and have developed osteopenia and a lot of lower back pain. Petscan and mri shows degenerative issues. I do have a lot of stiffness in the morning but it’s my lower back pain that’s more consistent , the pain is manageable though

Dx 3/14/2019, IDC, Left, 2cm, Stage IIIA, Grade 2, 13/20 nodes, ER+/PR+, HER2- Surgery 3/14/2019 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Chemotherapy 4/4/2019 TAC Radiation Therapy 8/14/2019 Whole-breast: Breast, Lymph nodes Hormonal Therapy 8/14/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 11/17/2019 Prophylactic ovary removal Hormonal Therapy 11/29/2019 Femara (letrozole) Surgery 7/31/2020 Reconstruction (left): Silicone implant
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Nov 13, 2020 10:10PM Annie60 wrote:

Is anyone finding your SE's come and go? I had some dizziness at first, it went away and now it seems to be back - not as bad as it was at first, but still troubling.

Lilly - a massage would be wonderful but I can't risk it with Covid. I have asthma so we don't go out much. I've never heard of using a tennis ball - can you tell me how this works?

Annie









Dx 8/28/2018, IDC, Right, 1cm, 1/3 nodes, ER+/PR+, HER2+ Dx 8/28/2018, DCIS/IDC, Right, 1cm, Stage IIIA, Grade 2, 2/3 nodes, ER+/PR+, HER2+ (DUAL) Radiation Therapy 5/29/2019 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 8/21/2019 Surgery Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy AC + T (Taxol)
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Nov 13, 2020 11:06PM - edited Nov 13, 2020 11:07PM by LillyIsHere

Annie, like this one:

Also, heat if it is muscle and ice if it ligament. I am using a hot water bottle to help release the tension. Warm bath or shower before bedtime helps as well.

Dx 7/31/2019, ILC, Left, <1cm, Stage IIA, 2/5 nodes, ER+/PR-, HER2- Surgery 9/19/2019 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 12/1/2019 Femara (letrozole)
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Nov 19, 2020 08:11AM Jeremiah29-11 wrote:

Hello, everyone! My onco recommended Relizen (very affordable if you buy direct from them, as a subscription, and have them ship every other month) and then I take only one tablet instead of the recommended two per day, and it works just fine.

BOTTOM LINE - Relizen has almost eliminated all of my hot flashes AND joint pain! I take this along with Emerald Lab's brand of a vitamin B complex, and ladies, it's like I've found the holy grail and my life is back on track. I was struggling with sleeplessness, irritability, weight gain and depression and physical pain every day back in my knees.

There is another product that I think CVS sells that is similar or a knock off of Relizen but I haven't tried that one yet. Anyway, I hope some of you find relief with the Relizen and vitamin B combo, and that your onco is cool with it like my onco is!

Blessings!

Dx 10/17/2017, IDC, Left, 5cm, Stage IIIA, Grade 2, 4/7 nodes, ER+/PR+, HER2- Surgery 11/7/2017 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 11/29/2017 TAC Radiation Therapy 4/9/2018 Whole-breast: Breast, Lymph nodes, Chest wall Surgery 6/20/2018 Prophylactic ovary removal Surgery 12/10/2019 Reconstruction (left): Latissimus dorsi flap, Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 10/28/2020 Reconstruction (left): Latissimus dorsi flap, Silicone implant; Reconstruction (right): Silicone implant Targeted Therapy Hormonal Therapy Femara (letrozole)
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Nov 19, 2020 02:49PM LillyIsHere wrote:

Thank you Jeremiah.

I have a question regarding blood tests. My LYMPHS came very high today. What does it mean? Can it be any SE of letrozole?

Dx 7/31/2019, ILC, Left, <1cm, Stage IIA, 2/5 nodes, ER+/PR-, HER2- Surgery 9/19/2019 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 12/1/2019 Femara (letrozole)
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Nov 20, 2020 11:54PM choochoobella wrote:

Hi Tewks,

I'd be more suspicious that your dry skin, itchy back and fatigue are related to your thyroid. You wrote that your TSH is up. Do you know exactly what your TSH level is? Normal TSH values are 0.5 to 5.0 mIU/L.The higher your TSH level, the more hypothyroid you are. Are you on a thyroid hormone supplement now?


Papillary thyroid cancer, stage IVa, surgery November 2009 Dx 12/7/2012, ILC, Both breasts, 1cm, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 12/21/2012 Lymph node removal: Left, Sentinel; Mastectomy: Left, Right Surgery 2/25/2013 Prophylactic ovary removal Hormonal Therapy 3/14/2013 Femara (letrozole)
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Nov 21, 2020 12:24AM choochoobella wrote:

Hi Betrayal,

You wrote, "My MO told me that if I finished 5 years on Femara that the beneficial effects of Femara would persist for another 5 years as protection from recurrence. I do like her and feel she has been the most honest of all my MD's but am having difficulty accepting this as the truth. I would love to believe this is true but I have not been able to find any evidence to support this."

Like GrandmaV, I had never heard that the benefits of Femara would persist after one stops taking it, but I did some research on that today. At this link, https://breastcancernow.org/information-support/fa... , I read the following (note the sentence in the middle that says there is evidence letrozole continues to reduce the risk of breast cancer coming back for many years after you stop taking it):

Stopping letrozole

Your treatment team will tell you when to stop taking letrozole. You won't need to stop taking it gradually.

Some people worry about stopping their treatment, but there's evidence that letrozole continues to reduce the risk of breast cancer coming back for many years after you stop taking it.

However, not taking the drug for the recommended time may increase the risk of your breast cancer coming back. If you're thinking about stopping taking letrozole for any reason, talk to your specialist first. Sometimes it may be possible to change to another hormone drug.

-----------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------

I'm seven and a half years into taking Femara. My MO definitely wants me on it for 10 years because she said the risk of an ILC recurrence doesn't diminish over time. I don't know what she will suggest after 10 years are up.

I have osteoporosis now and various joints have deteriorated substantially since I started Femara, but if it keeps the cancer from recurring, I'll accept the messed up joints.

I was upset to see my cholesterol level was way up at my oncology visit a few days ago. My total cholesterol level was 264. Yikes! It's never been over 200. I suspect the Femara is causing my cholesterol to go up. I'm the right weight for my height, exercise every day, and have been a vegetarian for 35 years. My MO wanted me to go on a statin, but I said I wanted to try upping my exercise level and cutting out almost all dairy first.

marijen's comments from a few pages back give me hope that I can get my cholesterol down to a decent level via more exercise and diet improvements. Thank you for inspiring me, marijen!

Papillary thyroid cancer, stage IVa, surgery November 2009 Dx 12/7/2012, ILC, Both breasts, 1cm, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 12/21/2012 Lymph node removal: Left, Sentinel; Mastectomy: Left, Right Surgery 2/25/2013 Prophylactic ovary removal Hormonal Therapy 3/14/2013 Femara (letrozole)
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Nov 21, 2020 11:38AM LillyIsHere wrote:

I was told from MO that the effects of letrozole continue after stopping it. If you take letrozole for 5 years, the benefits will continue for another 5 years. However, I was told to continue letrozole longer since my diagnose is ILC. Next week I will be 1 year since I started letrozole and I haven't been checked once for cholesterol. Does MO request a cholesterol check or should be a PCP routine check? My MO only checks how the liver and kidneys are handling letrozole and nothing else.

What type of tests does your MO request?

Dx 7/31/2019, ILC, Left, <1cm, Stage IIA, 2/5 nodes, ER+/PR-, HER2- Surgery 9/19/2019 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 12/1/2019 Femara (letrozole)
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Nov 21, 2020 11:58AM Betrayal wrote:

choochoobella: Posted a reply to you but it seems to have disappeared into the ether. I could no longer tolerate the damage letrozole was doing to my joints, tendons and back so I switched to the last AI available to me, exemestane. I had 2 thoracic and 2 cervical epidurals for excruciating back pain to no avail. Although dexascans showed continuing loss of bone I never met the osteopenia criteria and thus was regarded as "normal". Knees became an issue with a race to see which one would fail first, and the left won. I am looking at a replacement sometime in the near future. It was an evil drug for me and I had changes in cholesterol and blood sugar as well with elevations in both. The arthritis was crippling and tendon changes in hands and feet led to loss of some motor skills.

I am doing well on exemestane and now need to discuss with MO how much longer to remain on it due to finding of mixed BC on lumpectomies path report. Initial bx was IDC; lumpectomies showed C+DCIS, IDC and ILC. MO felt ILC was one to most likely recur and it is a late bloomer showing up after 7 years. So do I stop AI after 5 years next July or continue?

So for those who are doing well on femara, continue it; for those who are not, ask for another drug. Good luck to all.

Surgery 2/1/2016 Lumpectomy: Left Surgery 2/1/2016 Lymph node removal: Sentinel Surgery 3/4/2016 Lumpectomy: Left Radiation Therapy 3/31/2016 Whole-breast: Breast Hormonal Therapy 6/25/2016 Arimidex (anastrozole) Hormonal Therapy 5/19/2017 Femara (letrozole) Hormonal Therapy 6/16/2020 Aromasin (exemestane)
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Nov 22, 2020 10:49PM choochoobella wrote:

LillyisHere,

I hadn't had my cholesterol checked since 2013, but that test wasn't ordered by my MO. It was ordered by a family practitioner. I don't see any other doctors other than my MO these days.

I was the one who asked my MO to test my cholesterol on my last oncology visit. I had been noticing yellow deposits all around my eyes (xanthelasma) over the past couple of years. My uncle had them too and he had a cholesterol level of over 300.

I think our oncologists should periodically check our cholesterol levels when we are on aromatase inhibitors since studies have shown aromatase inhibitors frequently cause a significant increase in cholesterol levels. You can just ask your MO to test your cholesterol on your next visit. Make sure to fast that whole day. When your MO runs your routine CBC and comprehensive metabolic tests, she can ask that a lipid profile be done on the blood draw that you had done for the CBC and metabolic tests. You don't need a separate blood draw.

I had my blood drawn for a CBC and comprehensive metabolic test 15 minutes before I saw my oncologist and I asked her to add the lipid panel to the tests that were being done on the blood that was already drawn.

Here are a couple of links to studies that show significant cholesterol increases with the advent of aromatase therapy:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC23616...:~:text=However%2C%20when%20aromatase%20inhibitors%20are,lipid%20lowering%20treatment%20if%20required

http://ar.iiarjournals.org/content/29/8/3337.full

Papillary thyroid cancer, stage IVa, surgery November 2009 Dx 12/7/2012, ILC, Both breasts, 1cm, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 12/21/2012 Lymph node removal: Left, Sentinel; Mastectomy: Left, Right Surgery 2/25/2013 Prophylactic ovary removal Hormonal Therapy 3/14/2013 Femara (letrozole)
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Nov 22, 2020 11:05PM choochoobella wrote:

Betrayal,

I'm so glad to read that you are doing well on exemestane! Are your cholesterol and blood sugar levels better on exemestane than they were on letrozole?

I agree: letrozole is really hard on the joints for some of us. I've had surgeries on my right shoulder and right knee since beginning letrozole. My left shoulder and left hip hurt all the time. I try to ignore all my joints as much as possible. Sad

With you having had some ILC among your types of breast cancer, I'm guessing your MO will suggest continuing exemestane for a total of 10 years of therapy if you're still doing okay on it after 5 years.

My MO barely entertained my question about continuing letrozole after I had completed 7 years on it. She emphasized that the likelihood of ILC coming back years down the road is greater than the return of IDC, so she wanted me to stay on letrozole. I wonder if she'll even want me to stop it at 10 years. I don't know if there are studies being done on aromatase use beyond 10 years. I couldn't find any in Google searches.


Papillary thyroid cancer, stage IVa, surgery November 2009 Dx 12/7/2012, ILC, Both breasts, 1cm, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 12/21/2012 Lymph node removal: Left, Sentinel; Mastectomy: Left, Right Surgery 2/25/2013 Prophylactic ovary removal Hormonal Therapy 3/14/2013 Femara (letrozole)
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Nov 23, 2020 08:28AM BevJen wrote:

Choochoobella,

I was on letrozole from 2006 (my first recurrence, after having been on tamoxifen for 2 years) until 2019. After 10 years, my oncologist said that there had been one study that supported continuation of letrozole beyond that point, and that's why I continued on the drug. Sadly, it didn't hold me as I recurred in 2019 for a second time.

Microwave Ablations of the Liver: 7/2019; 10/2020; 12/2020 Dx 11/2003, ILC, Left, Stage IIIC, 13/18 nodes, ER+/PR+, HER2- Dx 6/2006, ILC, Stage IV, metastasized to other, ER+, HER2- Dx 5/2019, ILC, Stage IV, metastasized to liver, ER+/PR+, HER2- Surgery 7/4/2019 Targeted Therapy 7/30/2019 Ibrance (palbociclib) Radiation Therapy Surgery Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap Chemotherapy TAC Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lymph node removal; Mastectomy; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap Hormonal Therapy Femara (letrozole)
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Nov 23, 2020 02:58PM LillyIsHere wrote:

BevJen, I am so sorry you have to go through so much and live with SE of letrozole for so long to have BC returned. So unfair! Considering that AI can work up to 40% of the time, I always wonder if this group of 40% has been mostly successful by mastectomies, chemo, and radiation rather than AI medications. There is no blood test to check if there is any cancer cell left after all the procedures and heavy-duty treatments to see if AI really works or not. We just guess that our glass will be 40% full and not 60% empty.

Dx 7/31/2019, ILC, Left, <1cm, Stage IIA, 2/5 nodes, ER+/PR-, HER2- Surgery 9/19/2019 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 12/1/2019 Femara (letrozole)
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Nov 23, 2020 03:25PM BevJen wrote:

LillyisHere,

Well, good theory about the 40%, but with my original diagnosis in 2003, I had bilateral mastectomies followed by TAC chemo, followed by a full course of radiation. Then I went on tamoxifen, during which I had my first recurrence. Then I went on letrozole (2006 -- 2019). Letrozole did give me a very long disease-free run, though, and for that I'm grateful.

Microwave Ablations of the Liver: 7/2019; 10/2020; 12/2020 Dx 11/2003, ILC, Left, Stage IIIC, 13/18 nodes, ER+/PR+, HER2- Dx 6/2006, ILC, Stage IV, metastasized to other, ER+, HER2- Dx 5/2019, ILC, Stage IV, metastasized to liver, ER+/PR+, HER2- Surgery 7/4/2019 Targeted Therapy 7/30/2019 Ibrance (palbociclib) Radiation Therapy Surgery Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap Chemotherapy TAC Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lymph node removal; Mastectomy; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap Hormonal Therapy Femara (letrozole)
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Nov 23, 2020 04:00PM LillyIsHere wrote:

BevJen, do you mind sharing what symptoms did you have on your first recurrence and what treatments did you get at that time?

Dx 7/31/2019, ILC, Left, <1cm, Stage IIA, 2/5 nodes, ER+/PR-, HER2- Surgery 9/19/2019 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 12/1/2019 Femara (letrozole)
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Nov 23, 2020 05:53PM BevJen wrote:

LillyIsHere,

I had no symptoms on my first recurrence. (I actually had no symptoms, really, on my second recurrence -- just rising tumor markers.)

In 2006, I went to a routine gynecological exam and had a Pap test. My obgyn remarked that there was this little polyp on my cervix. She said -- Oh, I'll just it out for biopsy. Lo and behold, it came back with lobular breast cancer cells at the very tip. So it was a single site metastasis. I was sent to a gynecological oncologist, who said, after staging scans that showed nothing, that we should take out my uterus and my ovaries. There was no further spread other than that spot on my cervix. Then I went on letrozole.


Microwave Ablations of the Liver: 7/2019; 10/2020; 12/2020 Dx 11/2003, ILC, Left, Stage IIIC, 13/18 nodes, ER+/PR+, HER2- Dx 6/2006, ILC, Stage IV, metastasized to other, ER+, HER2- Dx 5/2019, ILC, Stage IV, metastasized to liver, ER+/PR+, HER2- Surgery 7/4/2019 Targeted Therapy 7/30/2019 Ibrance (palbociclib) Radiation Therapy Surgery Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap Chemotherapy TAC Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lymph node removal; Mastectomy; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap Hormonal Therapy Femara (letrozole)
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Nov 23, 2020 06:26PM LillyIsHere wrote:

Wow BevJen, thank you for sharing and for making us take other tests seriously. Us, ILC club will never be the same since this type can linger forever. I heard a 85 yr old woman who was treated and was NED from ILC for 25 years and now it showed up in her bones!

Dx 7/31/2019, ILC, Left, <1cm, Stage IIA, 2/5 nodes, ER+/PR-, HER2- Surgery 9/19/2019 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 12/1/2019 Femara (letrozole)
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Nov 23, 2020 06:31PM BevJen wrote:

ILC is VERY sneaky. On the other hand, it is usually pretty slow growing. So there's that. But that doesn't mean that someone with ILC can just ignore stuff.

For me, each of my recurrences has occurred after a particularly stressful time in my life. So right now, I'm just trying to "live" with my cancer -- or maybe the word is "co-exist."

Microwave Ablations of the Liver: 7/2019; 10/2020; 12/2020 Dx 11/2003, ILC, Left, Stage IIIC, 13/18 nodes, ER+/PR+, HER2- Dx 6/2006, ILC, Stage IV, metastasized to other, ER+, HER2- Dx 5/2019, ILC, Stage IV, metastasized to liver, ER+/PR+, HER2- Surgery 7/4/2019 Targeted Therapy 7/30/2019 Ibrance (palbociclib) Radiation Therapy Surgery Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap Chemotherapy TAC Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lymph node removal; Mastectomy; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap Hormonal Therapy Femara (letrozole)
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Nov 23, 2020 06:54PM LillyIsHere wrote:

Mine too. I believe it started from a very stressful situation in my life. Trying to live the same as you, taking it easy even though I have 3 teenagers at home (including my DH :)). We, early stagers, are so grateful for all the wisdom and support you all are providing us.

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Dx 7/31/2019, ILC, Left, <1cm, Stage IIA, 2/5 nodes, ER+/PR-, HER2- Surgery 9/19/2019 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 12/1/2019 Femara (letrozole)
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11 hours ago choochoobella wrote:

BevJen,

Happy belated Thanksgiving. (Happy Thanksgiving to you too, LillyIsHere!)

BevJen, I'm grateful you are here, but I'm so sorry for all you have been through for so many years. The cervical metastasis may actually have been a gift in terms of extending your life by decreasing your estrogen production via the hysterectomy.

It is so much easier to tell someone to reduce their stress level than it is to actually do it. So much is out of a person's control in terms of what life hands you. It takes a lot of fortitude to determine how you will handle what you face and what you decide to say yes and no to in life.

What do you do to relax?

I have been an anxious person for most of my life, probably because my mom was very anxious and I learned to be that way (she spent most of her time "prophylactically worrying," not that it changed anything) and because there was a lot of stress due to health issues my brother and father had when I was growing up. My brother was diagnosed with leukemia when he was 13 and he lived for nearly 4 years, but it was nearly 4 years of immense battles with constant chemotherapy and radiation and all their side effects. My dad had 3 bouts of malignant melanoma, but ended up dying young of a heart attack. I've struggled mightily with depression on and off ever since my teens.

Over time, to relax, I've chosen to spend a lot of my waking hours outdoors. I garden almost every day, as long as the temperature is above freezing. It gets me out of my own head. I've been the volunteer caretaker of a formerly abandoned 7 acre cemetery for 35 years now. It's only a block away from my home. Working there became my therapy starting when I was 28 years old. I walked by the cemetery shortly after my husband and I bought our house. A woman was sitting on the ground next to 300 daffodil bulbs looking overwhelmed. I asked if I could help her plant the daffodils and she talked me into taking over the care of the cemetery in the 3 hours it took us to plant all the bulbs.

The cemetery had been devastated by vandalism at that time. The grass hadn't been cut in years. I would plod over there after work every day and try to make a dent in something. I spent all the daylight hours working there on the weekends. In the early years, I mowed the grass myself. It took me two weeks to finish a mowing and it would be time to start again. I was working full-time, but I didn't really come alive until I got home from work and went through the gates of the cemetery. I began fund-raising and eventually raised enough money to pay for mowing. That allowed me to apply for grants and do other fund-raising so I could start planting trees there. The balm of being there was listening to the birds and watching the bees and butterflies on the flowers that I planted, little by little.

It's taken over 3 decades, but the cemetery is a nationally recognized arboretum now. I've planted about 300 trees and now have a total of 5 pollinator gardens there. I quit working full-time almost 7 years ago and the cemetery has been a full-time job for me ever since and believe me, my house looks like it! Years ago, I gave up on trying to keep an immaculate house. Now, I just nod at a dust ball when it blows by.

We live near an apartment where people have left their cats behind. I'm not really a cat person, but we've taken in 17 cats from there over the years we've lived here in addition to the dogs we've adopted. I still have 6 cats. With that many animals, I realized I'd have to adjust my expectations of what constitutes a clean house. It doesn't hurt that I've been on anti-depressants for 25 years now.

I almost never cook, but my husband thankfully decided to take it up about a year ago. He likes it. I can spend 8 hours weeding a garden, but after 10 minutes of chopping vegetables, I lose my will to live. Scared

I used to be much more of a people-pleaser than I am now. I'm naturally introverted, so socializing with a wide variety of people was mostly stressful to me. Even pre-Covid, I was rarely willing to go to parties and other get-togethers. I have a sister, a daughter, and a few friends that I would die for and I feel grateful beyond measure for them. I have circumscribed my life dramatically over the years and that has paid off in reducing my anxiety and depression.

I realize what relaxes a person is different for everyone, but I think figuring out what does and indulging that (as much as is practical) is key to making the best of the time we have here.

All the best to everyone from my very little corner of the world. Heart

Papillary thyroid cancer, stage IVa, surgery November 2009 Dx 12/7/2012, ILC, Both breasts, 1cm, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 12/21/2012 Lymph node removal: Left, Sentinel; Mastectomy: Left, Right Surgery 2/25/2013 Prophylactic ovary removal Hormonal Therapy 3/14/2013 Femara (letrozole)
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An hour ago BevJen wrote:

Choochoobella,

Wow, you certainly have taken on a massive task with that cemetery. But good for you! It sounds like you have made it into a beautiful and reverent spot for all.

You asked what I do to de-stress. Destressing is a new thing for me. For years, I just took life as it was thrown at me. Probably not a good idea. Now I am trying out meditation several times a week. I like it a lot although I'm not great at it. I am also trying out different types of exercise. I retired in June, and am now trying to "find" myself and "find" activities that I like to pursue. I think that zoom classes are a great thing because you can sample a lot of things and see what you like/don't like. I also had a 90 minute consult with an integrative medicine doc that I found very helpful.

Question for you faslodex ladies: I will have to push back my faslodex shot about a week at the end of December/beginning of January. My MO said it was fine, since I've been on the drug since July 2019. Of course, I'm concerned that it will have some impact. Has anyone else ever done this? I'm just curious what your MO has to say.

Microwave Ablations of the Liver: 7/2019; 10/2020; 12/2020 Dx 11/2003, ILC, Left, Stage IIIC, 13/18 nodes, ER+/PR+, HER2- Dx 6/2006, ILC, Stage IV, metastasized to other, ER+, HER2- Dx 5/2019, ILC, Stage IV, metastasized to liver, ER+/PR+, HER2- Surgery 7/4/2019 Targeted Therapy 7/30/2019 Ibrance (palbociclib) Radiation Therapy Surgery Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap Chemotherapy TAC Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lymph node removal; Mastectomy; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap Hormonal Therapy Femara (letrozole)

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