My oncologist is suggesting one or the other treatments for progression of cancer on ibrance and faslodex . I just finished 5 radiation treatments to the throat & neck area for the progression , I am wanting to recover from the radiation for a bit and get my blood counts back up ( caused by ibrance ) so I guess you could say I am stalling a bit in making this decision . I have had IV chemo for the initial diagnosis 17 years ago but I do hate the idea of hair loss again and everyone knowing that I am sick . When reading the side effect other than hair loss the capecitabine side effects sound as harsh as the IV regime . My oncologist was leaning towards the IV but is willing to wait until she see another scan from my neck area to see how effective the radiation treatments were.
Luanne, I am on Xeloda and have decreased the lesions in my liver by 30% in the 3 cycles that I have been on it. Ibrance quit working for me too. My first cycle was awful, on full dose, vomiting constantly. I told my oncologist it wasn’t worth it. He decreased my dosage to 3000mg twice daily from 4000mg. Since then, my vomiting is minimal and mostly if I don’t eat on time. I’m not losing any more hair from my original Ibrance shedding. My only side effect is a runny nose and my fingers peeling. I would certainly recommend it, knowing that you might need to decrease the dosage but it still works, just like Ibrance. I have more energy on Xeloda than I had on Ibrance, which I really appreciate. I’m available for any other questions you might have. Hugs, Elaine
I am not really sure when it quit working , I have not been feeling the greatest since March of this year , sinus pain , cough , horse voice / laryngitis , fatigue numerous calls to my family dr & phone appointments with oncologist ( due to Covid not really examined ) I was prescribed nose sprays , inhalers ,medications for Gerds , referred to an ears nose and throat specialist , prescription allergy pills . Nothing worked ! I basically begged my oncologist to have my scan expanded to my throat & neck area as there was a lump in my clavicle area . They agreed , finally . My lymph nodes were not happy a growth was found inflaming my esophagus area I had a biopsy and it tested positive for ER & PR + breast cancer . So a very long story to say I am not sure , my dosages had been decreased because of low neutrophils, I was down to the 75 mg for the last 2 cycles .
In total I was on the ibrance & faslodex for 24 months with no progression to my bone Mets or lung Mets , it was just this new area of concern .
I think scans are a good indicator but in Ontario Canada they only scan certain areas not the whole body .
Yes you should wait a bit before starting chemo after radiation. That’s what I did because I suffered from fatigue after radiation to the brain. I opted for Capecitabine. My onc started me on a very low dose of 500mg x 2 a day with no break. I am suffering no side effects except nausea on the 4th day. I will be increasing my dose to 500mg x 3 a day still continuous with no break. They call it metronomic dosing. So far it is working for me. I hope the increase in dosage doesn’t give me side effects though. I would go for oral chemo first and save the IV chemo for when the oral chemo doesn’t work.
Thank you so much for sharing your experience . I am purposely stalling on starting anything right now due to fatigue & killer sore throat (from radiation) . And wanting my blood counts to get built back up since not taking ibrance anymore . I like the idea of starting a low dosage and building up vs a high going down . I think our bodies go through so much tearing down that it take so long to build back up.
Dear Luann. I really recommend starting low and building up dosage. Aside from terrible fatigue, I lost a lot of weight and had no appetite after my brain radiation so I waited for a month until I felt I could tolerate chemo before starting on the low dose. It was easy for me as I had no diarrhea or hand/foot syndrome. I will be increasing my dose starting Friday so I will keep you posted on what I feel on the higher dose. The low dose I am on though is continuous. No 1 week break.
Hi Luann; I am supposed to start on Xeloda also. My oncologist will start me at 1000mgs. because Ibrance lowered my immune system so easily. She did tell me I would not lose my hair on Xeloda. So you might want to try it. The other thing to do is find out the side effects from the other treatments and then decide.
Thank you June , the oncologist & nurse did give a run down at my appointment on the side effects and the written information on both suggestions . But it honestly becomes a bit of a jumble for me to process the information. I also really value fellow cancer warriors experiences . I find my medical team is good but they tend to kinda candy coat things a little . Warriors have the experience.
I know what you mean Luann. It is difficult to digest everything they say at appointments. I feel the same about this forum. So supportive, valuable and comforting. I wonder if doctors have such a forum or if they have time to take part in one? Wouldn't that be lovely. They would learn more quickly what is being tried and how it works. I will ask my oncologist and her nurse next visit. Actually, I think the nurses commiserate together more often. That is just in there own work place though. This forum is so much more far reaching. Wishing you all the best.
My question. Have you had gene testing to know more about your tumor makeup? So you know what works for the next round. Or is the decision based on that?
I have asked about that but apparently the “ trial “ or “ funding “ has just been closed on that in Ontario Canada ???? , I was signed up for a possible upcoming trial called OCTANE .Ontario -wide Cancer TArgeted Nucleicacid Evaluation .but have not heard anything from it , that was May 2019 .
I will have to question them further on this as some of the information in my file doesn’t seem to get read .
I stared weekly Taxol about 2 months ago and started the cold caps with the first treatment. There is some expected thinning which I have experienced but I still have a normal level of hair thickness. You have to rent the systems so you need to do a little planning and get the system delivered to you before you start. They have to be packed in dry ice so I spend a little time finding the best dry ice supplier too. My onc. gave me a month off my last set of drugs before I started the Taxol so there was time for all of that. Some center offer the cold caps service as they have the equipment. My center does not offer it so I had to rent my own system.
In order to benefit from the Pertuzumab, Trastuzumab, and Chemo combination, your cancer would need to be HER2 positive. Since you've had Ibrance, which implies that your cancer is hormone receptor positive, is it safe to assume that your cancer is both hormone receptor positive and HER2 positive?
Thank you for the clarification. Both therapies are viable, and Xeloda is oral. (It's always a good idea to seek a second professional opinion when changing treatments).
Below is an excerpt from my book, "The Insider's Guide to Metastatic Breast Cancer" about treatment for triple positive:
Herceptin plus Pertuzumab and a Taxane chemotherapy:
According to NCCN 2020 Guidelines, this “triplet” is the preferred therapy for triple positive patients.
(That said, frontline treatment for HER2+ MBC patients was researched in the Phase 2 PERNETTA trial which randomized 210 previously-untreated HER2+ MBC patients [some of whom were triple positive] to receive either Herceptin, Perjeta, and chemotherapy [“Group 1”] vs. Herceptin and Perjeta without chemotherapy [(“Group 2”]. Patients whose disease progressed were given Kadcyla in the second-line setting. Results announced in July 2019 indicated that the 2-year Overall Survival [OS] was similar in both Groups, although the Progression Free Survival (PFS) was better in Group 1.
For HER2+, hormone receptor positive patients in Group 1, the median PFS was 23.7 months vs. 8.3 months for Group 2, and the 2-year OS was very close – 74.2% vs. 75%.
The researchers indicated that frontline Herceptin and Perjeta without chemotherapy (but with endocrine therapy) may be considered for triple positive patients with low-to-intermediate tumor burden, especially since treatment toxicity is considerably reduced.
Your professional input is so much easier to understand than the medical papers the oncologist gave me . Easy to read in a concise manner . It is what I need to try to navigate these rocky waters of metastatic breast cancer treatment .
Thank you for sharing your book and advice on this forum , I really appreciate it .
Luann, I am glad that the explanations are understandable! Sometimes information from health professionals can oversimplify (i.e. if you have MBC, your options are chemotherapy, etc.) or be overly complex. I try to rephrase findings in layman-friendly terms while providing the statistics.
Hoping that you respond beautifully to your next treatment, whatever you decide!
I seem to be going through things a bit backwards. I was on Xeloda for over a year. It was perhaps the best medicine I have been on. No problems that I can remember until it stopped working. I was triple negative at that point. Then I went to taxol, lost my hair, got neuropathy (one of the worst symptoms ever, and I still have it). I insisted on a rediagnosis of tumors and discovered that I was now estrogen positive. I have been on Ibrance 100 for almost a year. It is holding the lesions at bay currently and the side affects are tolerable but I’d return to xeloda in a heartbeat. If it was me I’d opt for xeloda over taxol. But as I said, those were the triple negative days. Good luck to you, just know whatever you do not choose will always be waiting for you. But who knows maybe there will be something even better in your future! I’m sending my positive vibes for you in that direction.
That you so much for sharing your experience. It is so crazy confusing trying to understand how our cancer can change . Your acknowledge has helped me to feel so much more comfortable with the Xeloda. Do you remember what dosage you were on ? Luann
HI Luann, I also experienced progression while on Ibrance. I was on it less tha a year when I got that "you need to come in to the office now " phone call after a routine ct scan. The oncologist was explaining how we were going to go with abraxane when he suddenly changed his mind and suggested xeloda but only for 2 or 3 months at the most pending the next ct scan report. Well that was 3 years ago. Liver lesions cleared up , lesion in sternum shrunk and has been stable. I have had surgery for a lesion in tibia recently but because everything else remained stable we decided to stay the course with xeloda. My hair has thinned, I do tire and I do have a runny nose. No peeling skin or horrible diarrhea. Take 1000mg twice a day on a 2 week on 1 week off cycle. All in all I thank God for xeloda and the opportunity to be around these past 3 years. Good luck with your decision. Marie
Thank you so much for sharing your experience Marie . It helps so much to hear such a positive result . I hope you get many more good years on xeloda. Luann
I did IV Herceptin/Perjeta for 4 1/2 years before things got crazy this week 🤦♀️...And there’s no hair loss with that one and I was working full time till Monday...
Do you know what your next treatment will be for the brain Mets ? I would love to have the energy to work full time or even regular part time . Will you be taking some time off for your next treatment ?
I have just finished 5 radiation treatments to my throat and neck and that has me a little fatigued and dealing with a really bad sore throat. So I work a bit but at my own pace and when I have the energy. (I am self employed).
Hi! It IS all really confusing! I just wanted to report that I’ve been on Xeloda now for 2 1/2 cycles, and though I’ve had some issues with diarrhea, I really like it. I’ve started exercising again which really helps my mental outlook, and I can see some improvement in all my areas that have Mets.....BUT I also had really good results, and a pretty good quality of life, with Docetaxol....I bought a wig because I anticipated hair loss, but it never got thin enough to use the wig (Which makes me want to say NEVER let them shave your head until you’re sure you’re losing it all!!!!). So the Xeloda is pills and the Docetaxol IV...maybe that can help your decision. My husband works in Germany, so I’m hoping the Xeloda will work long enough and well enough to visit him in the spring, because that means I can stay longer and not have to return for IV treatment. Isn’t life complicated???? As others have said, let me know if you have any questions! Good luck!
Hi. I was on Ibrance 125 for about a year. I also got faslodex shots and zometa iv. I didn't have any problems. I had a pet scan after a year, and the Ibrance wasn't working as well as doctor wanted. I am now on Afinitor 7.5. I started on the 10mg, but had several side effects. I still have a few, but they are a little better. I will have another scan in December to see how the Afinitor is working. My breast cancer (2014) metastasized to the bones ( no organs) and was discovered August 2019. My biggest complaints are shortness of breath, food tastes not so good, and aches. If Ibrance worked, I would go back on it. Good luck with you treatments.
I don’t think ibrance is an option for me anymore as I had progression when on it. I hope your side effects get better and that you have good scan results in Dec
I had a lot of problems with shortness of breath with Afinitor, and wish that I had complained about it more vocally to my doctor...when I finally did it was pretty advanced, and they had to take me off the Afinitor, which is why I’m on Xeloda now. I am NOT a doctor (obviously),and I’ve heard of MANY people having much better experiences with Afinitor....I just want to encourage you to be alert. I hope I’m not stepping out of line in doing so.....please forgive me if you think I am....
Thank you for the info. I have a scan coming up, and we'll see how that is. If it is working, I'll probably ask about going down to 5mg. I getting winded just walking down the driveway to get the mail. I'm used to hiking, walking, etc. I also had radiation in 2015, and I think that might have done a little lung damage. I'm not sure if Xeloda would be the next step or not. Take care and stay safe.
Xeloda never worked for me I was on on 10 days ended up with a bowel blockage in hospital was miserable I wasn’t caring about my hair it grows back I then went on Adriamycin worked better no side effects
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