New Meds

[Jerseygirl45]

New meds.

Looks like Ibrance is no longer working. They may change both my meds Faslodex and Ibrance. Is anyone on Verzenio and having good results and no side effects? Not sure if she is putting me on it just asking in case.

[Clair19]

I’m sorry to hear this!! May I ask why are they not working? I’m sorry 😐. I can’t take both so I can only take Faslodex, so I’m not getting much benefits. There is one more it begins with a K. However they are all mostly the same medicine just different drug companies and a few different makeup’s. Remind me where’s your Mets? One plus at getting older is our hormones are slow and helps. You could easily not take anything and old age would be the problem not cancer. I read and read so many women post are going to live longer with Mets average up to 10 year mark. They always average age group life expectancy with metastatic breast. Starting at age 40-75. Most fit the latter age between 55-75. I had hysterectomy at age 35, so really low hormones when diagnosed 18 years ago. I do believe I have had this a lot longer before diagnosed. I’m sorry to ramble, I will pray for you..🙏🙏

[Jerseygirl45 in reply to Clair19]

My markers have been going up since Sept. she took me off Letrozole and put on faslodex in Jan 2018. But pet scan showed activity last week. So she is making a plan before my faslodex next week. Said she may order radiation for my shoulder that is in pain and showed progression. Then she may change Ibrance only or maybe both. She wants to study my whole chart before I go back Tues. she is my new doctor since May. My other doctor left for family emergency. I hope it all works out.

[Clair19 in reply to Jerseygirl45]

It will, you have been so positive and seem to have excellent health care professionals working for you. I think you will be good on new medicine, Faslodex is very tolerable, just first injections because your not sure what to expect. If I can make a suggestion? Ask them to let you warm up the Faslodex. The reason is we seem to be naturally warm, take the syringe in both hands and shake them while widdling between fingers for at least 15 min. When they warmed up it hurt so bad, they asked if I wanted to and I said of course. Shaking makes big difference, I could hardly feel them going in.

[Clair19 in reply to Clair19]

Sorry meant to say doesn’t hurt so bad.

[Snowcone16 in reply to Clair19]

Is there option to numb? I get a pellet injected to put me into menopause monthly. They give me a pre-shot to numb. I don’t feel a thing then.

🌸

[Clair19 in reply to Snowcone16]

Hey, I didn’t know you where getting the pellet for hormones. How long have you been getting them? With the pellet injections you get lidocaine, I’m thinking. The Faslodex is not bad, more like a steroid injection, just first one was scary. I hope it’s not to bad, this disease is not fair to anyone let alone someone as young as you are. I wish you luck and you will do great you have such a good outlook.

[Obig in reply to Clair19]

Hi! Jan here. saw on another post where you have experience with Verzenio? I have been on Ibrance and Letrozole for about 4 years, but just had recurrence of bone mets in spine. My onc thinking of switching me to Verzenio and Faslodex. Can you tell me your experience?

[Clair19 in reply to Obig]

Hey Jan, I could not take the Verzenio as it just did not agree with me. I’m still taking the Faslodex without any problems. I’m sure you will do fine. Let me know.

[kduck in reply to Clair19]

Clair how where your scans just taking falsodex? Are you still just taking falsodex??

[Clair19 in reply to Jerseygirl45]

May I ask what your markers stay around? Thanks 🙏

[Jerseygirl45 in reply to Clair19]

They went from 2245 down to 168 they are now staying for over 6 mo about 836. Went off letrozol and Ibrance now on Faslodex and Afinitor. You can see why I am worried.

[Clair19 in reply to Jerseygirl45]

Yes I know some people don’t want them but for me they do show progression. If they are down my lesions are smaller. So that’s why he uses them on me. Thanks I didn’t realize they where so high in the beginning. They have dropped. I think this new combination will work well, just get past first few months.

[Snowcone16]

I know Clair has experience w Verzenio. Have you taken letrozole? There was a response to my post on scans of some other meds. I think Ex-something was the med.

Did you have symptoms or was this a normal follow up scan? How long were you on Ibrance?

[Snowcone16 in reply to Snowcone16]

Just read your above responses. Great to have a doctor that is detailed to review. I hear success around tumor studies to help them hone in on appropriate meds.

I’ve heard good things about the folsadex shot too. I see about 50/50 take it exclusive and some in combination.

🌼

[Burgerde]

I have been on faslodex and verenzio for about 2 months now. verenzio is same category drug as Ibrance and works same way. It is better on the WBCs then Ibrance is. Other wise has same side effects. Doing ok but last scans just recently showed growth of most of my metastasises but doc thinks it hasn't been long enough to tell so left me on them for now and sent my biopsy tissue to California for testing for targeted therapy sorry to hear not working, there are a lot of drugs out there. Hang in there #

[Jerseygirl45 in reply to Burgerde]

Thank you for getting back to me. I was on letrozole and Ibrance fo 18 mo and was doing good. Markers started going up. So in Jan 2018 they put me on Faslodex and Ibrance. But it is 6 mo now and markers are still going up and pet scan last week showed more lesions on my shoulder. So she is saying maybe it is the Ibrance that is not working.so she may just change the Ibrance to verzenio. Not sure if she will change. The Faslodex. She will see if they can do radiation on shoulder for the pain. So glad you are getting along well on the verzenio with no major side effects. I will see what her plan is next week. I will let you know. Thank you again.

[Jerseygirl45 in reply to Jerseygirl45]

Ok, instead of verzenio she put me on afiniter, waiting to see if insurance will cover. Hope it works. I want markers to start going down again.

[lashinator]

Sorry to hear I think you had a good run for 18 mo. The average for Ibrance to work is 22-24 months. On to the next drug. Good luck! More new drugs all the time. Sending you good thoughts.

[Jerseygirl45 in reply to lashinator]

Thank you. Yes I was on Ibrance about 21 mo. Hope they keep coming out with new ones to move onto.

[Jaxon2007]

Ibrance stopped working for me too after the first three months. Was taken off that and faslodex and put on afinitor and exemestane. Curious about verzenio though.

[Jerseygirl45 in reply to Jaxon2007]

I heard it is the newest one that is like Ibrance. My onc said the cancer cells get used to a drug and can then get past it. That is why she may change both at the same time. Guess I will see tues what her plan is. Just hope it controls everything.

[Jerseygirl45 in reply to Jaxon2007]

Ok, Saw my doctor again today. Her plan is to keep the Faslodex that I started in Jan 2018. She is changing Ibrance to afiniter. Is anyone on this drug? How does it feel, does it lower your tumor markers.

[Jaxon2007 in reply to Jerseygirl45]

I was put on this after Ibrance didn't work, along with Exemestane and Zometa infusions. Honestly I didn't stay on it long enough to see how it worked as sought out a second opinion and so glad I did. Was told at MDA that this treatment would do nothing for me, only target one area of cancer. I was given a mouthwash for mouth sores if I got any. Good luck to you

[Jerseygirl45 in reply to Jaxon2007]

Thank you, I will watch carefully. I get tumor makers every month and pet scan about every 4-6 months. Thank you for getting back to me.

[Obig in reply to Jaxon2007]

What treatment did MDA say would do nothing for you? What kind of cancer did you have and what are you on now? Thanks for any info.

[Jaxon2007 in reply to Obig]

2017 was diagnosed with breast cancer, because of the size of the tumor, stage 3. I'd had my mammogram in February 2012 and found this lump in October 2012. Don't know why it didn't show up in February. Had the chemo, mastectomy, radiation, put on anastrozole, made my 5 year mark, then pleaded for scans. No scan but a bone density test showed had gone to my spine and hip. I was hr+ her2-, onc refused to consider cancer type had changed. Put on Ibrance, Zometa infusions, and faslodex & letozole shots monthly. Still wouldn't do scans every 3 months, and when after 8 months did a scan and have spots on liver and ribcage. Went to MDA and told onc was treating me for wrong kind of cancer, it had changed to triple negative, treatment I was on would not work. Now on Xeloda, and Zometa infusion every 3 months. It's only been one month since. Keep praying!

[Jerseygirl45]

You will probably be fine on Ibrance, for some people it works for 2-3 yrs. some people less. As long as you don't have a problem enjoy.

[kkrouse]

I’m so sorry. I have to remind myself that nothing will work forever. Sucks. I don’t know about that drug. Letrozole worked 5 years for me. I’m on my 7th round of Ibrance/Faslodex. Fingers crossed.

[_fight_]

I’m on verzenio and faslodex. Started with 150 mg twice a day , side effect was very bad diarrhea. Also bad cramping

Oncologist to the dose to 100 daily, side effect cramping , bloatedness.

[BeckyHobson]

Oh darn!! I’m sorry to hear this. Stay positive like you have been this far. I too had new growth and had to have more radiation. My oncologist has added Faslodex to my drug regimen. Keeping me on Faslodex, Ibrance, Aromasin and Zometa. His thought is that we don’t know that Ibrance has completely stopped working?? Faslodex is a piece of cake, makes me wonder if it is doing anything. Counts are in the tanks but what else is new right?

New scans in September and praying for the best.

[BeckyHobson]

Hi there,

I have recently added Faslodex shots to my treatment along with Ibrance and examestane that I have been on since May 2016. I will have scans again in September and praying that the addition of Faslodex has stopped the cancer again. Normally Faslodex and Ibrance aren’t given together my oncologist says but he thinks the two will work together. The only side effect is that my labs are super low. Anemic, neutropenic, and now my monocytes are too low suggesting I need more B12?

I feel ok except for a pain in my left hip and exhaustion. I think the left hip is old age and weight gain but I just keep keepin’ on and living life to the fullest every day.

Praying the combo works well for you!!

[Klamato in reply to BeckyHobson]

I was diagnosed with 4th stage breast cancer in April after 6-1/2years after state one lumpectomy. I took Aromosin for 5 years and had no lymph node involvement. I had a 2nd opinion at Dana Faber in Boston and that oncologist felt strongly that I BEGIN right away on Ibrance in combination with Faslodex (fulvestrant) injection along with Xgeva monthly. The reason she felt that way was that she felt I had failed with Aromosin after 5 years, so the injections are better for my treatment. My breast cancer matastized to lung, spine, and liver in that short a time so I wanted 2 opinions on this treatment and have felt strongly that this is the good treatment! God help us all with whatever is going to work! Good luck to you with your treatment.