My initial MBC diagnosis was in 2016 with one metastatic spot on the top of the left femur bone near the hip. Treatment was very light with a daily letrozole pill and a monthly Lupron injection. The spot melted away in one year and remained NED on annual scans for five years.
I was working for six years and living a relatively "unimpaired" life until this past Summer. The annual CT scans showed a suspicious spot, even though the bone scan didn't see anything unusual. An MRI followed by a bone biopsy confirmed a recurrance of metastatic breast cancer.
My doctor said the cancer had mutated and was immune to the aromatase inhibitor class of treatment, so new drugs were prescribed. In Sep22, I started on monthly fulvestrant injections followed in October by round #1 of ribociclib and a Zometa infusion to strengthen the bones. The Zometa will be administered every three months.
After my first round of ribociclib in Oct22, my neutrophils were dangerously low. I was given an extra week off to recover, then contracted COVID. I was prescribed Paxlovid which helped the symptoms a lot. However, I don't feel like I can go back on the ribociclib. The side effects involved difficulty breathing and swallowing.
I've got a swallowing disorder as well as severe laryngeal pharyngeal reflux which comes up in the night causing me to sometimes choke on what's in my stomach. My digestive system doesn't work very well and the ribociclib made my entire digestive tract sore and irritated.
Has anyone else in the group opted out of an oral kinase inhibitor and found success without it? Is there another way? I'd love to hear your experiences. My doctor would like me to go back on a kinase inhibitor and hasn't been able to se or hear me when I tell her about the digestive issues being a problem.
Having COVID has been a reprieve and I'm worried about my ability to continue fighting COVID and the seasonal flu when the inhibitor disables my immune system. I'd gotten my 2nd COVID booster a month before catching COVID , but it didn't do any good. I'm curioous how other mettavivors balancing COVID with treatment.
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MettavivorDS
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I was diagnosed in 2017 and have been on a variety of treatment protocols over past five years. I am currently on Vinorelbine (10-minute infusion on Monday, 3 weeks in a row. It results in low neutrophils which is being treated with self-injection of Filgrastim on Tuesday and Wednesday. The Filgrastim is provided free of charge through Pfizer.
Not sure if you might want to discuss this with your oncologist, but prayers for your well being!
I’m having a hard time having conversations with my doctor. I’ve been trying to get transferred to a different doctor at another cancer center, but there seems to be some short staffing that’s causing delays.
Although I take 600 mg. ribociclib and letrozole, I have many mets throughout my spine, liver, spleen, lungs, liver and skin. If I only had bone mets, I would certainly try treatment without the CDK 4/6 inhibitor. It seems to me that quite a number of patients are doing well with monthly fulvestrant injections, and that's what I would try in your case.
When talking with your oncologist, do keep in mind that it is your body, and your life, not hers. If you can't reach an understanding, I would ask for a second opinion.
I agree with Hazelgreen. You can always add in the inhibitor — try it alone, first. You did great with letrozole alone…I am on letrozole alone now for 7 years and when I progress I plan to move on to fulvastrant alone, as well…standard of care is a great starting point, but it can be tweaked for individuality (for example—I chose to get my ovaries out instead of the Lipton shots …things like that…) very best to you—and wish you a good relationship with your oncologist.
I was on fulvestrant alone for 7 months, it was the best treatment especially as I didn’t have to remember to take pills. I was so scared of the injections - some describe the needles as chopsticks 😱 but I was able to carry on as normal with work and was fortunate to have fantastic nurses each time. I do hope this works well for you. If I had the chance to go back on it - I would, but I know we’re all different. Lots of advice on the board re this treatment. All the best
The injections for Fulvestrant are much less painful than I had anticipated. After having monthly Lupron injections, I’ve become a skilled at asking for what I need. The injections are much less painful when administered sitting down. A skilled nurse can use the top of the gluteal muscle and it doesn’t hurt as much as standing.
What was your next line of treatment after the fulvestrant stopped working?
I have had feet problems which have now resolved but I don’t blame it all on Cape - I ‘neglected’ my poor little feet for 7 days and hell broke loose! Apparently the average of this treatment is around a year, not sure what’s next - but my last scan showed same, shrinkage and nothing new after 3 cycles. Hope I get a bit more than a year!
Can you take Ibrance instead? I had problems with that initially and then was fine with a dose reduction. Took that with Faslodex for 4.5 years before both stopped working.
I’m encouraged to hear that you had 4.5 years of Ibrance before it stopped working. I’ve been offered Ibrance many times. I was told that it wouldn’t affect my outcome. Overall survival is the same whether you take it or not. The immunosuppressive aspect scares me. You would get that with any kinase inhibitor. I caught COVID from my 13 year old. I was taking ribociclib and was immunosuppressed despite recently having had the COVID booster shot.
I’ve still got to get a seasonal flu shot. However, if I go back on a kinase inhibitor it’s likely that I will catch the flu, even with a vaccination. It feels like being between a rock and a hard place.
Sorry to hear about your recurrence. What a wonderful 6 years you had…. I wish I heard such treatment successes more often.
Reflux: I take Verzenio, also a CDK Inhibitor. It has greatly worsened what was previously a very mild case of Acid reflux. I have to sleep with a wedge pillow or I get chunks of acid coming up.
I use this one:
Acid Reflux Wedge Pillow. USA Made with Memory Foam Overlay and Removable Microfiber Cover"Big" by Medslant. 31x28x7 Recommended Size for GERD & Other Sleep Issues. 1 Business Day Ship No Restock Fee a.co/d/5GtRyYS
Do you see a gastroenterologist? I also take Omeprazole 2x per day.
Regarding your breathing, have they done a chest CT to check for Pneumonitis/interstitial lung disease? All the CDK Inhibitors can cause this and it’s very important you get a CT scan to out-rule it.
The CDK inhibitors have been one of the most important advances in extending PFS in metastatic BC… I would try to make this “forced marriage” work if you can cope with the side effects.
I am keen to know if you still take the Lupron injections as my oncologist is insisting I must do them for years rather than surgery, which is considered too risky (apparently there’s some theories that surgeries can spread Mets , but there’s no 100% scientific consensus)
Also, how did you cancer change? This is a subject of huge interest to me and many people here as many of us have cancer which is mutating or trending from Hormone positive to negative.
I wish you much luck in figuring out solutions to coping with these tough side effects, if it’s at all possible 😻
Thanks Red Azalea for the pillow recommendations. I spend many years buying and trying different types of pillows. My husband and I finally bought an adjustable be frame that lowers both head and foot for many positions. I have to sleep on my side, so raising my head as much as indicated doesn't work.
Chinese herbs from my TCM doctor work much better than any of the pharmaceutical drugs I tried with a GI doctor. They are expensive and I pay out of pocket. However, there are no side effects and the formula gets adjusted based on how my body is doing. My TCM doctor adds anticancer herbs and immune boosting herbs which help to keep me balanced. I believe the herbs, the tui na treatments and tai chi classes that my TCM doctor/teacher provides have contributed to lasting 6 years on letrozole alone.
I'm still taking the Lupron to ensure that I am post-menopausal. I was told until age 55, so I am in the grey zone. There's no way to know if I'm past actual menopause without withholding the Lupron to see if I ovulate. I want to wait until I'm 56 to be sure.
You had asked about how my cancer had changed from on recurrance to the next. My original metastatic spot was ER+,PR+,HER2-. This tumor melted off and had been NED for five years. The new tumor is showing ER+, PR+ HER2 (low)-. I've also had an oncogene mutation test that shows a tiny bit of mutation (less than .5% ) of PIK3CA. These changes may come into play for future treatments, if the second line of treatment doesn't work.
Get a second opinion you deserve someone who will listen and give you tons even though it could mean going to a second line treatment. If a GI doc could manage GI symptoms maybe you could tolerate the current treatment.only you know what you can tolerate and live with. You have a disease they can't cure . You deserve a doc who listens.
I spent several years with GI doctors taking two heavy duty drugs (Dexilant and Nizaridine) that never controlled the reflux. The medication only made the stomach acid less acidic. My micro biome got messed up and I wasn’t able to absorb nutrients from food very well. One of the medications was pulled from the market because it causes cancer and there’s a class action suit against the manufacturer.
Six years ago, I started seeing a TCM (doctor of Traditional Chinese Medicine). The herbal formula he gives me works much better than any pharmaceutical drug I’ve tried for reflux. That is, until I went on the ribociclib.
The problem is having the toxic chemicals of the kinase inhibitor gushing up into my throat and lungs. My epiglottis doesn’t function very well, either. I aspirate when I’m swallowing, if I’m not very careful to concentrate on swallowing. These areas were not designed to have such harsh chemicals touching them and secondary cancers can occur from not protecting the throat, esophagus and lungs. My oncologist said she would do nothing when I explained my digestive issues and asked what she was going to do to protect my larynx and lungs.
You certainly deserve a more thoughtful and compassionate response from a doctor. I have had to break up with 2 oncologists because of the way l was treated it was hard emotionally more than anything but well worth it. My GI issues are similar but not nearly as severe. I am glad you found some help. I have learned that the meds l have been on have changed my gut microbiomeOne thingl know for sure is that we have the right to qualified, compassionate care and the right to guide our treatment in accord with our values. I wish you the best.
I am one of those old protocol gals, when I was started on Faslodex many years ago, the CDK's were not yet standardized. When I had a single lymph node that went metastatic alone(was biopsied and receptor status unchanged), I recieved radiation to that single lymph node and have been back on just Faslodex for about 1-1/2 yrs so far. If I had your GI issues I would ask to see how it went w/o the CDK inhibitor. For me we are still saving the Ibrance for a rainy day.
When I told my oncologist that I didn't want to go back on the ribociclib, she smiled and said we could just use the fulvestrant. She also mentioned that five years ago fulvestrant alone was the standard treatment. She also said that given the longevity of 6 years on daily letrozole (along with monthly Lupron injections), the fulvestrant should last a long time.
This is a much more positive attitude than I got from her on my first day of treatment. I'd felt like I was being pushed into taking the ribo, yet my onc told me there was no guarantee it would even work, if I wouldn't give up my Chinese herbs. The herbs for me are non-negotiable because it's the only thing that helps my severe larygeal pharygeal reflux issues. I'm unable to sleep at night, because of reflux when I don't take the herbs.
I'll have to see how it goes. There's only one metastatic spot on my iliac bone and I just started taking Zometa to strengthen the bone and make it hostile to cancer growth.
I've heard that turkey tail is good for cancer. Is there a particular brand you like to use? I've never tried and would love a recommendation.
I don't know all the ingredients in the TCM herbal formula the Dr. Ming Wu makes for me. He changes the formula slightly whenever I have symptoms. Every once in a while, I ask him to translate the herbal names and write them down for me. My body has been out of balance with this second line treatment. I'm also getting over COVID and was unable to see Dr Wu while I was sick. I believe Evodia is one of the ingredients that never changes. It's good for reflux.
According to TCM, my reflux is caused by a cold stomach. The treatment involves only consuming warm or room temperature food and drinks, no salad and very little fruit. In addition, I take 3 grams of the formula before breakfast and again at bedtime. Every other week, I get a tui na massage (like accupressure, but from a Chinese person) to remove the energy blockages in my body. I'm also taking a tai chi class with Dr Wu every week. These are out of pocket expenses, but seems to be keeping me alive long past my expiration date.
I use only the Host Defense Brand as it was used in a study backed by the NIH. While studies are few, the most recent I read suggests that Turkey Tail mushroom helps the immune system find cancer cells. My Onc is fine with it but considers the clinical trials anecdotal. I also take Zinc Glycinate and Magnesium Glycinate, the RDA of Magnesium is a minimal, but for Calcium to really be absorbed well Magnesium must help with the absorption. Recently, I requested a Bone Density test, since I had completed my 5 yrs of Xgeva followed by a yr of weaning with Zometa every 3 mon. To our surprise my bone density was totally nl for a 64 yo
Thanks Fancy Dog! I will look for that particular brand of turkey tail.
Congratulations on the normal bone density test! It takes a lot of work to maintain a normal density when undergoing cancer treatments. My density is dangerously low due to having had six years of hormone therapy. My density dropped so much that at age 55, my bones are aged to the level of a woman in her 70's. Last month, I finally started on Zometa. It was a hard decision, but having mets in a bone left me with no choice. Already, I'm feeling stronger!
I was diagnosed with MBC in 2004, way before targeted drugs like kinase inhibitors and I got over 9 years from fulvestrant. I had "extensive" bone mets at diagnosis, and got almost five years from my first treatment with Letrozole. I've met quite alot of women who got more time from fulvestrant than from their first treatment with an AI.
I was on Ibrance along with fulvestrant for a few cycles in 2016 and it did permanent damage to my lungs. I sure understand why you are leery about ribociclib. Is changing oncs an option for you? You are the one who's gotta live with side effects.
Your story is so encouraging, Pam! I'm in the process of changing my oncologist and moving my care from one cancer center to another. It's taking a very long time. Evidently the insurance authorizations have to be redone, but also timed so the approvals take place before my next treatments are due. All of them are on different schedules.
The side effects of the fulvestrant are a lot easier than what I'd experienced on letrozole. I'm liking this treatment better than the first one!
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