Starting Ibrance and Letrazole next week

[MaryJ-S]

Hi everyone,

I have been on Afinitor and Letrazole for 2 and half years. My tumor markers have been going up every month and this past month it jumped 80 points. So, my oncologist is switching me to Ibrance and Letrozole this coming Monday. I have had many chemos prior to Afinitor and wonding if there is anyone else who may be like me and found Ibrance to work for them. It seems like people who start Ibrance and only have a short amount of time do well on Afinitor and vice versa. So I am a bit nervous...

Thanks,

Mary

[demanos]

Hi Mary,

I just finished round 33 of Ibrance/Letrozole. I have a few side effects by my cancer has been holding steady so far. Every month/year has been different. Hang in there Love!

[SusieIM in reply to demanos]

Indeed, hang in there. I just finished round 1, of Ibrance and femera. I am overall doing good.

[PJBinMI]

Dear Mary, Did you have scans of some kind that showed progression? TMs aren't always accurate and it's my impression that most oncs don't change meds just on the basis of TMs. This might be a good time for a second opinion from a bc specialist onc at one of the Comprehensive Cancer Centers. Those are the top tier of cancer centers in the US and most offer second opinion evaluations with bc specialist oncs who do research as well as seeing patients and tend to be very much up to date on the most recent research findings and recommended protocols. I can't really answer the question you asked, but your mention of TMs only and changing meds leaped out at me. Good luck to you in whatever you do about this. I hope you get many more years outta treatment.

[MaryJ-S in reply to PJBinMI]

I have been fights metastatic breast cancer for about 7 1/2 years. The tumor markers seem to work for me but I am also having a PET Scan on the 15th. My oncologist didn't want to wait to make the change as the numbers have been going up and this last one doubled. That is what seems to happen when cancer is found somewhere in my body. I think it is in my lower back as I have been getting weird sensation in my right leg. Our Center is now part of MD Anderson so I know they get a lot of research info and have lots of clinical trials trials. My oncologist is the Director of 2 of the sites. He has not failed me yet and has brought in new info on treating the side effects of Afinitor. And I can email him on his personal email address and he answers me within incredible speed. I trust him and Ibrance does appear to be a drug I should try but I also know it is given mainly to women who are first diagnosed with mets. Not much infor out there that talks about patients who have had lots of different chemos and how Ibrance may work with them. Do they get as much time on it?

Thank you so much for your support!

Mary

[sweeetk in reply to MaryJ-S]

Mary, can you message me privately. I just got a referral to MD Anderson, but I'm not sure I can go all the way to Texas. So, I thought I would ask you if you can privately message me the name of your state where they have a connection with MD Anderson...or maybe you are in Texas.

Thanks, Kim

[MaryJ-S in reply to sweeetk]

Hi Kim,

I live in San Diego, CA and my cancer center is Scripps MD Anderson Cancer Center. There are many Scripps Centers that have oncology doctors throughout San Diego County. All of the oncology doctors are now part of MD Anderson's cancer program in that treatments are based on the same practices as well as we will have access to all the clinical trials without having to leave San Diego.

Are we closer to you?

Hugs,

Mary

[sweeetk in reply to MaryJ-S]

Hi Mary,

I don't want to post on the public page of this site where I live because of people who log-in to this site to look for information who don't have cancer.

I used to live very close to you....very. I have friends who live in San Diego. My mom still lives in Ca.

I now live far away.

Wish I could move back.

I was thinking of taking myself (hard with my son) to MD Anderson). When I saw your post, I was thinking maybe I could take him somewhere closer. You are closer to me than MD Anderson in Texas.

So, yes, maybe I could look into coming there instead of Texas.

You could always send me a "private" message in the future.

But thanks so much for now. I'm going to think about that.

[spouseM]

Hi Mary,

I am on Ibrance and Let now for 13 months, minimal side effects. This is the first meds that I have been on. It works well for many people.

Sending positive, healing thoughts your way, Michelle

[MaryJ-S]

Thank you!

[Partia]

I am going on my 16th cycle and it's not bad at al. Letrozole makes my joints hurt but I am also 58! My 1st line of treatment was taxotere and cytoxin. I got a 2nd opinion and switches to I and L.

[Meadesmith in reply to Partia]

Try cannibis gummies for the achiness. No head rush with cdb oil gummies. Just wellness feeling and achiness gone. Like all the time gone. ( Long time ibrance letrozole girl )

[PickedTheWrongChick]

I started Letrazole on October 12th and Ibrance on Nov 1st. I am taking Ibrance right after a meal and have gotten blisters in my mouth within 30 minutes of taking. Is this normal? I am asking my oncologist for a prescription for 'magic mouthwash' today since that seemed to help with mouth sores during my radiation. Only 5 days in so no fatigue or nausea yet. Best of luck Mary J-S- let's do this!

[Meadesmith in reply to PickedTheWrongChick]

Mouth sores is your mucus lining being damaged. Probably you noticed all your mucus areas are suffering. I pump my vit c. ( 5000 mg) and that really helps. For lower parts, lots of coconut oil. Also sleep with a humidifier for the dry nose. I have dry throat as well. Sometimes a lizenge helps.

[PickedTheWrongChick in reply to Meadesmith]

Thank you for the suggestions. I have increased my vitamin C as winter is approaching. I haven't tried the coconut oil before but use it for a variety of other things so will give it a try after work today.

Have a great weekend! Thank you to all the veterans who proudly served our country.

[MaryJ-S]

Hi all,

My results with the PET scan showed cancer in the chest area in between the lungs. I will probably be having another one next month as TMs continued to go up (although not quite as much) after 2 months on Ibrance & Letrozole. I think my oncologist might change the Letrozole out and put another drug that can be used with the Ibrance. Will let you know.

Anyone else have Ibrance + who has had multiple chemos (5+) where Ibrance worked?

Thanks,

Mary

[sweeetk]

I received your private comment but you didn't leave a question.

I don't get much time to sign on to the forum anymore. I'm working through some surgeries and long recovery times with several hours of PT.

I'm taking Tamoxifen. I don't like it. It brings me quite a bit of harsh hot flashes (not as horrific like the letrozole did and the lupron that I used to take most of 2017), but still bad. I stopped taking those in September after Ibrance did its work.

Hope this helps.

[MaryJ-S in reply to sweeetk]

Thank you!

Mary

[lashinator]

I am finding now a loss of appetite, but it's really that nothing tastes good. I'm was a HUGE water consumer, and now that doesn't even taste good. So not like me. Anyone else?

[Dgarrett]

62 months! On Ibrance and letrozole. Just had scans and bone scan. No evidence of metastatic disease!

[Teddielottie in reply to Dgarrett]

That’s fabulous news ! Celebrate ! 🎉

Are you still on 75mg 2 weeks on / 2 weeks off ? x

[Sebina in reply to Dgarrett]

That’s fantastic news 💕