Treatment

I’m curious how many with lobular breast cancer here are on Ibrance/Letrozole or other combinations and have not had any other therapy; i.e., mastectomy, chemotherapy, radiation.

[Ktraff]

My mom was in Ibrance and Letrozole for 23 months ..... she didn’t have any other treatment during that time and she did very well.... after recently getting a second opinion we are planning a radiation therapy on the left hip area.......she is now taking Piqray

[Maludagui in reply to Ktraff]

Hi. Sorry for ask Why your mom want a second opinion and need therapy after 23 months? Was ibrance no working more ?

[Ktraff in reply to Maludagui]

Hi.. after a scan which she has approx every four months it indicated her cancer had moved to the left hip area... which was originally in the right hip (which seems treated at this time now) so her oncologist switched her from letrozole/ Ibrance because of the progression...... it was upsetting it appears the meds stopped working so I took her for a second opinion.(never hurts to do so) I had mention radiation prior to her oncologist and he didn’t feel we should ..... ... tomorrow we are going back to that location where we got the second opinion for a pet scan and a biopsy of the left hip which will be conducted Monday........ with the idea of possibly radiating the left hip area pending the results of scans.

[Ktraff]

She also had a double mesectomy prior to starting her first line of treatment .....

[LouisaMay]

I had a mastectomy nearly 13 years ago for ductal TNBC. I refused chemo. I had another mastectomy 7 years ago for a new primary cancer, this time lobular HR+. Again, I had no other treatment than surgery.

Since my latest metastatic recurrence (extensive mets to bones, also hazy mesentery and spots on liver as well as skin mets) I am just on Ibrance and Letrozole. I have been on Letrozole for about 7 months, Ibrance for 5 months and so far am doing well. Tumour markers going down steadily and skin lesions cleared up.

[LouisaMay in reply to LouisaMay]

PS I have recently started Fenbendozole as well.

[Hidden]

Thank you both for your replies. I hope the treatment keeps working. Please keep me posted on the Fenbendozole and if you think it’s helping.

[PJBinMI]

I'm a long timer--was diagnosed denovo stage IV in March 2004 with bone mets only, and lobular bc. I did have a lumpectomy but have never had radiation or "chemo." I got nearly five years from the initial letrozole that I was treated with, along with Zometa for my bones. When I had some progression, but still only bone mets, I switched to Faslodex and got over 9 years from it. We switched me from Zometa to Xgeva as soon as it was approved for bone mets. I did have a few cycles of Ibrance, alone with the Faslodex, in 2016, but it did a number on my lungs and I've ended up with something called Interstitial Lung Disease, which the pulmonologist said was like "gunk between the sacs" and cause me to feel out of breath easily, like from leaning over to tie my shoes. I don't tolerate humid weather well at all. So,,,,,I am not a fan of Ibrance! Now I am on exemestane and Xgeva. Lobular bc is usually estrogen receptor positive and her2neu receptor negative and often responds well to the anti-estrogen meds. I recently went back to U of Michigan Comprehensive Cancer Center to see a bc specialist onc, second time I've done that (first time right after initial diagnosis and he said he thought I could plan on having quite a number of years left. I've never had symptoms from the cancer itself but I do get tired quite easily now and don't know how much is from cancer, how much is from cancer treatment, how much is from other health issues, and how much is from age! But I still do the grocery shopping, most of the laundry, almost all the cooking and often feed our dog and cats. My husband and I just drove about 50 miles each way to meet some of his friends from childhood and have lunch with them. It was wonderful to see them but I am unlikely to do anything productive the rest of the day, except possibly feed the cats! lol

[Hidden in reply to PJBinMI]

Thank you so much. It gives me hope that you’ve been Stage IV since 2004 and are still here to write to me. That’s so awesome. I’m sorry your energy is low. When I feel low energy, I do find if I do something, it feels better. There are the days when I just sit and do nothing, and I don’t feel guilty about that. I appreciate your response.

[Shar313]

I have lobular bc and Ive been taking Ibrance and Letrozole since my diagnosis in January. So far so good for me. Few side effects except for hourly hot flashes.

[Hidden in reply to Shar313]

Hi, Shar313. Have you had any surgery or chemo on top of that or only the pills? I’m looking to see if anyone has just had medication and no other treatment. I’ve actually had hot flashes all day every day for about four years nonstop, way before medication for cancer. I don’t feel they’ve gotten worse yet, but I’m only on my second round. I have a feeling my doc is going to make me get off the Ibrance for a few weeks again on Monday.

[Shar313 in reply to Hidden]

Hi KMBL,

I haven’t had any surgery or other treatments besides the Ibrance/Letrazole.

[Hidden in reply to Shar313]

Thank you so much, Shar313. I appreciate you letting me know. It seems we were both diagnosed this year.

[PJBinMI]

About hot flashes--I had major hot flashes, with sweat running down my head, bright red skin, and feeling overwhelmed. My onc prescribed Effexor for them and many hot flashes every day turned into what I call "warm surges" once every week or so....so much easier to handle. I have been taking Effexor (the long acting kind, I forget the two letters that indicate that for this med) 225 mg per day. I get 75 mg capsules and take two in the morning and one in the evening. Effexor is an anti-depressant but is also known to reduce hot flashes in a dose lower than used for depression. If you don't want to use meds, a wet cloth across the back of the neck can help. Alot of blood flow there, close to the surface, so a cool damp wash cloth or paper towel can help. An ice pack would work, too.

[Hidden in reply to PJBinMI]

Thank you, PJBinMi. I’ll ask my doctor about Effexor. And thank you for the tips. They can be pretty hot, so I’ll try the cool cloth on the neck.

[Shar313 in reply to PJBinMI]

Hi PJBinMI,

I tried Celexa who’s is a “cousin” of Effexor, with no change. I also tried a BP medicine Clonodine, and Gabapentin which also didn’t work. I’m going to a Naturalpathic Dr next month with hopes that she has some tricks in her bag. 😉

[kearnan]

I have lobular breast cancer (estrogen driven) in my right breast. I have never had chemo, surgery or radiation. I started about a year and a half ago on Ibrance and falsodex. It was my first time with such a heavy duty med (I never even had to go to a hospital for any kind of surgery, never had to stay at a hospital overnight, etc.) They started me with Ibrance and falsodex. I found the Ibrance very hard to deal with. An infection that I used to get occasionally in my upper left thigh area (infected cysts from the inside of the body) that made me unable to walk because my leg or pants would rub against it. Normally, in the past, I would get antibiotics and it would be gone. Because the Ibrance had messed up my immune system, they took me off it, five weeks on antibiotics, NOTHING happened. I had to get surgery where they cut tunnels in my upper thigh and the recovery period which was excruciatingly painful (as they told me it would be) did not heal. There were loads of holes in my upper thigh. Instead of the one month recovery, it took FOUR months and even now I have heavy duty scarring. When it was time to go back on treatment, my onco said no more Ibrance. Did an ultrasound, mammo and they found a new cancer tumor grew far from my original one in same breast.Tested and it was the same type of breast cancer so not really worried. My tumor is kind of large...you can see dimpling and the inverted nipple but I prefer to keep my breast anyway. So now on Verzenio 50 mgs. twice per day with no weeks off (this was after trying me on larger doses 150 and 100 mgs. of Verzenio and I could not even finish the rx, the side effects were too much for me.) So now I am on the lowest dose of Verzenio and get my falsodex and I feel normal, for the most part, do not have to take naps, know how I am going to feel every day. I hated the Ibrance. So I have just done medications and shots. It's been over a year and a half and I feel fine. Good luck. Chemo is something personally I would NEVER do. I know most women get anxious and such. I don't know why but I never get anxious before a scan and I never get nervous while waiting for results. I wait until I see my onco. I don't know what my markers are, and I don't care. All I need to know is if it is working or not working? It works well for me. Wasn't even nervous when they saw a new cancer tumor but happy that it was the same type I already had. I didn't know you could have two kinds of breast cancer in one breast. (Sorry for the long email LOL)

[Hidden in reply to kearnan]

Wow, Kearnan, sounds like you’ve been through a lot. Thank you for the response. I’ll have to look up the different medications to see what each one does. I hope you keep feeling good. That’s what I strive for every day.

[worldtravel75]

I have been on only since last December - they are going to do a PET scan soon - Tumor markers up and down - my biggest problem is an ESR1 mutation that seems to be resistant to AI's and they don't really have a drug to counteract this -feeoing kind of down right now

[Hidden in reply to worldtravel75]

Can you let me know how they found that mutation? I haven’t heard of that. I’m really sorry to hear you’re down and totally get it. I hope your PET gives you good news.

[worldtravel75 in reply to Hidden]

found when they sequenced the dna in tumor - it will show all mutations so they know how to treat

[Hidden in reply to worldtravel75]

Ah, okay. I will ask my doctor about it. I know after the first month, my tumor marker numbers dropped, which makes me think it’s a good combination.

[worldtravel75 in reply to Hidden]

I think it is now a standard of care to map the tumor - since breast cancer is now treated based on mutations.

[Livinthedream]

I was diagnosed with Er+/Pr-/Her- lobular carcinoma. My bc was barely at stage 2. All oncologists said have a lumpectomy and followup with radiation for 6 weeks. I took the oncotype dx test to see if i needed chemo, results were I didn’t need chemo. This was Dec of 2013. I was put on anastrozole and after 4 months had a rash from head to toe, it was miserable.

My oncologist took me off of anastrozole for 7 months, he then put me on letrozole and after 5 months again the rash returned. So i had to wait another 6 months off meds for it all to clear up and he sent me to a dermatologist, then biopsy and sent it in, tests were inconclusive.

I am certain that my oncologist is the reason i currently have stage 4 mets bc of him taking me off meds instead of sending me to a specialist.

Late 2015, i choked on a piece of chicken, and my husband was banging on my back and I immediately started coughing up bright red blood. I didn’t tell him for two days bc i was concerned that i now had lung cancer.

Two days later i was still coughing up blood so i told him and we went to the ER. They did a CT scan and the ER dr told me that i had two spots on my spine that were consistent with metastatic lesions.

I went to my radiation oncologist, they biopsied the cancer and said its mets in my spine and my cancer has mutated to triple negative bc.

He told me to go to a teaching hospital and get into clinical trials bc if i was his wife thats what he would tell her. I got an appt with a oncologist at a teaching hospital who pulled all my records, scans tests etc and presented my case for tumor board. All doctors agreed the triple negative diagnosis was a false positive diagnosis and i was most likely still ER+. She started me on tamoxifen & xgeva and it stopped progression of my cancer until Sept 2018 approximately 2 1/2 years. I was started on ibrance 125 and letrozole and had terrible issues due to low wbc and low neutrophils so dosage was lowered to 100 still same problems. I had a pet scan and no shrinking of tumors but no new cancers (March 2019). Reduction dose to 75 and still was struggling with ibrance fatigue and had a scan in July 2019, new metabolic activity in my spine ilium sacrum so ibrance failed and am currently on faslodex. Not sure whats next for me bc my cancer is in bones they can’t put me on meds for other breast cancers until my cancer goes into soft tissue and they can get a correct diagnosis.

[Hidden in reply to Livinthedream]

Wow, what a rough road you’ve been on. I’m so sorry. I hope they can find something to help you.

[Livinthedream]

Thank you! I hope that for all of us on this mbc fight