First of all, I am so glad to have found this community. Your stories, experiences, outlook, perspectives, etc. are immeasurably valuable as we all try to navigate this condition and keep pressing on- together. This isn’t easy. This is real. This is no fun.
I have ER positive, HER2 negative with mets to bones, small spot on my lung, one small tumor remaining in my liver (after the others were treated with A/C chemo this past January 2019).
I saw my oncologist yesterday to review my most recent scan. There were tears. I have been on Ibrance and Fulvestrant since March 2019. It took some time for my body to adjust to the ibrance and deal with the side effects. I finally started to feel ‘normal’- even if my blood counts never returned to normal. In fact, it became such that I would dread the week off because I felt bad during that time. I thought that this would be the regimen for a while. I had become used to it. It worked for months.
My scans since chemo have been stable, but this last scan showed something that concerned my oncologist and she wants to start me on XELODA. I have a small amount of fluid in my lung and a small amount of fluid in my stomach area (?). The tumors are about the same, but possibly a bit bigger- hard to tell with all of the scarring on my liver. Also, my liver tests/enzymes have been elevated for my last three blood draws.
This is where the tears came in. It feels like things never stay ‘good enough’ for long and I feel like the rug is being pulled from underneath me each time this happens and there is a change to my treatment plan. I must admit that every new drug scares me. My head was spinning in the office, at one point, I felt like I couldn’t hear and I struggled to put together coherent sentences. I had a list of questions/concerns that I wanted to address during this visit, but I couldn’t even ‘see straight’ to discuss them in light of this news. I like my oncologist. I trust her. But, I was so flustered that I just wanted the talking to stop. I didn’t want to hear her anymore. I couldn’t even look her in the face anymore. I wanted to run away.
I feel like a medical experiment. This is all so exhausting. Everything is unknown. It’s always wait and see. It drives me crazy. By the evening, I was in a better frame of mind, but I am still exhausted.
Now I have to get ready to start a new medication, possibly deal with new side effects, etc., etc.
I have been (obviously) thinking about this a lot. I have also been reflecting on some of your posts.
I had genomic testing done and got the results at this visit. I do not have the mutation that Piqray targets. I am not a candidate for immunotherapy. My tumor is very estrogen sensitive.
Due to my cancer profile, treatment with: Ado-trastuzumab emtansine, lapatinib, neratnib, pertuzumab, trastuzumab would not be beneficial for me. (excuse the spelling, I don’t even know what these are, but they were on the report)
An aromatase Inhibitor (by itself) would not be beneficial. I have been on two different AIs; Tamoxifen & Letrozole. I was on each of these for a little over a year, then started to have issues and progression. SO, I am frustrated that the years spent on those therapies was a waste of time (and possibly detrimental- due to progression) because of the information that we now know from this testing.
The report showed that combination ibrance therapy with Fulvestrant (which I have been on for 10 months) is of benefit, but nonetheless, now I have to change from that.
XELODA is supposedly of the most benefit for my tumor type- of the therapies referenced in the report.
While I was on LETROZOLE, I kept complaining to my then oncologist that I was having stomach, digestive issues. For months! She kept dismissing me at first, saying that stomach issues were not one of the ‘usual side effects’ from LETROZOLE. I kept bringing it up at each visit- she kept dismissing me. My point to her was that it could still be caused my the LETROZOLE even if it wasn’t one of the ‘usual/common’ side effects. She attributed it to my then new liver mets. Eventually, after discussing this issue (and others) with my primary physician- she sent me for an endoscopy and colonoscopy. Turns out that I had pretty significant gastritis- all the way up to my esophagus. The gastroenterologist was surprised that I did not have significant heartburn- I had NO heartburn symptoms, no acid reflux. Just the unsettled stomach and digestion issues that I had mentioned to my then oncologist. This brings me to a post on this site about the discovery that there is LATEX in LETROZOLE as a filler. What!!! And WHY??? So, the LATEX could very well have caused the gastritis that was discovered and that I am trying to heal. Yet another reason why undergoing all of these treatments concerns me- there is no way to know what the he!! Is in these medications that could be causing another whole host of issues. Our bodies are exposed to so much and are being put through so much. If my then oncologist had listened to me and taken me seriously, maybe she would have investigated and I wouldn’t have had to suffer for months.
So, here I am. Trying to get my head right to prepare to start this new medication in a few weeks once my counts have (hopefully) recovered. I am concerned about the unknown. My oncologist feels very confident about this change. It is nice that she thinks/ feels this way- but they are not the ones who have to go through this and experience all of the twists and turns, upheavals, etc.
I just needed to vent. I hope, pray, wish for the best for us all.
Meditating and trying to process all of this.
Please share your thoughts. Please share your experience with XELODA.
Thank you, ladies.
NamasteLove
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NamasteLove
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I don't have any experience with Xeloda -- I'm sure others here will weigh in -- but I'm so sorry that you have to deal with all of this! You put it perfectly when saying that you feel like a medical experiment....and the stress of changing meds is just awful. I'm glad, though, that you had the testing done which shows that Xeloda is your best option...That takes away some of the guesswork and questions re: why some second or third line treatments work better for some women even than e.g. first line.
I'm hopeful that this info will pay off for you with success of the new treatment...
I'm glad that you are able to vent here, and your post was very informative and helpful...
Hi, Lynn. Thank you so, so much for your response and encourgement. Thursday (the day I got the results) was a low day for me. I am slowly picking myself back up.
Keep well.
Nama
Hi Nama,
I haven't got any experience of xeloda either, so can't comment on that. But I can relate to how you feel. I think a lot of us feel like medical experiments to a certain degree. It's a case of "Let's try this and see if this works." I'm sorry to hear that your previous oncologist ignored what you had to say. When we mention symptoms, pain or anything else that is bothering us we must be taken seriously. After all, we know how we are feeling.
Your feelings are justified and completely understandable. We all need to be able to share our feelings with those who understand what we are going through. It can bring a great sense of relief to know that we are not alone as we live with this disease. I find that even though my oncologist is an expert in her field, she cannot fully understand what this life is like, as she does not have cancer. One of my oncology nurses has metastatic breast cancer, so she knows exactly what this is like, and I can really relate to her more whenever I see her for my infusions.
You're welcome. Yes, this disease can be very isolating. I find it hard to talk to friends and others who have had cancer and are now recovered because I want that too!
I too received my genomic test results this week. I also did not match Piqray. Oncologist said maybe 40% of people have the matching gene. My mutation is only in 10% of people so not to many drugs for it. I matched Afinitor which made very sick last year and Gemzar IV chemo. So I will be starting that in January. She said she thinks I am done with estrogen blockers.
Sorry you need to go through this too. It makes us feel so bad.
Thanks, Marianne! I am oddly looking forward to it, apart from the soreness afterwards. The last time my breast was biopsied it was black and blue from the bruising. But it's a small price to pay if I can find out more about the tumour and what kind of treatments it is likely to respond to in future if things change.
That's interesting. I hope you can have additional tests done to find out more about your particular cancer. As you say, it makes sense to find out what's going on so that treatment can be more targeted.
I want to find out which mutation or gene I have too. There were some questions on the forms about family history of cancer. My mum and aunts did not have breast cancer, so I don't think it's genetic, and both my grandmothers were quite elderly when they died. I don't think they had breast cancer either. One of my cousins on my dad's side died from breast cancer three months before my diagnosis, but I am not sure if that counts, as I don't think a cousin is counted as a close blood relative. Once I have the genomic testing done I will have to wait 12 weeks for the results, so it will take a while.
Yes, you would think so! I don't know why they don't mention it to us. Maybe our oncologists would rather we brought it up first, but if I had not said anything I would be none the wiser. It was the same with the whole shingles saga I went through earlier this year. I fought hard for that vaccine, as I did not meet the criteria (over 70) but I finally got it. Sometimes we really have to fight our corner to get the best treatment. It is not automatically given to us. I used to trust doctors implicitly, but I am more wary now having seen what some of them can be like. They should all have our best interests at heart, but not all of them do.
We certainly are learning a lot about the medical system and medical profession. I am being treated at the hospital where I was born and my mum died. Before my diagnosis I had only been back on the rare occasion to visit others (since my mum's death) and so was not all that familiar with the hospital. Now I could navigate it blindfolded, walking backwards! I know where many of the departments are now.
Afinitor is an estrogen blocker. My radiologist said he thought it would work well. I only took it for two weeks I had mouth sores nails falling off fever and chills went into pneumonia. I kept saying I think it is the new chemo meds. No one listened.Do they not know us women keep daily journels on our symptoms and and feelings. They said there was something on my lungs that did not explain the pneumonia. My team of doctors five of them in hospital had a meeting brought up the Afinitor info and said oh yes in fine writing says can cause lung problems. So I was off by then pneumonia did not cause any permanent damage to lungs. We then thought of lowering the dose from 10mg to five, but I was scared and said let's start .IV chemo.
But now since it is one of my choices and if chemo Dont work may be forced to try lower dose. My doctors are listening when I say certain side effects are from new meds.
We women are not fools we pay attention to daily feelings.
I finally asked for something for depression as I could feel myself falling from this ride. I am on cymbalta for two months and starting to feel better. If you need to go on Afinitor don't worry I can see it affects everyone different. So it may be one you are offered.
Although not quite as bad as getting my initial diagnosis of MBC, I get a similar feeling every time a treatment stops working - extreme disappointment that a treatment has run its course and extreme anxiety about starting a new treatment - will it be effective, what kind of side effects will I experience. I'm so sorry that you are going through one of these transitions.
About my experience with Xeloda - I started in mid-February 2019 after the Ibrance/Faslodex combo stopped working. As many ladies will concur, Xeloda has been a relatively easy drug and so far, it has worked in eliminating my liver lesions and keeping me stable in my lungs (several MBC nodules) and vertebrae. My last PTscan showed a new growth in my healthy breast, but it is HER2+, so I am being treated with Herceptin for the new mass, while continuing on Xeloda for my original HER2- MBC.
The only side effect I can speak about is the hand/foot syndrome, which is caused by the Xeloda leaking into the capillaries of the hands and feet. With proper dosing and taking preventive measures (avoiding or reducing activities that cause friction on the feet - jogging, walking long distances, etc), it can be managed. There are several lotions/oils that you can use to prevent dryness from the hand/foot syndrome if you experience it. If you search for "Xeloda" on this site, there is a lot of information from previous posts.
I wish you well during this tough time and I really hope you do well with Xeloda.
Thank you so much. I am glad to hear that Xeloda has been working for you. I will let you all know how I adjust once I start. It puts my mind a bit at ease just knowing that XELODA has been in use for quite some time. Just a bit. Still the anxiety of starting something new. Keep well.
I’m sorry that you are going through yet another change. I think we can all relate to that sinking feeling we get when the news is bad and all we want is time to deal emotionally before we get to the facts. I can’t generate questions until I’ve been through one night where I shut down my head and just absorb the blow. Then it’s always too late to ask all the questions I’ve generated until the next month.
It seems as if when we get MBC, we become nothing but a cancer patient and anything that is not thought to be associated with our cancer or medication is dismissed. We are still living breathing people who get all sorts of things, sometimes due to our treatments and sometimes just due to the fact that cancer is not all of our being. It’s hard to get your voice heard! I’m pretty stoic so when I complain, I expect my docs to listen but they often don’t. It took my husband who is an anesthesiologist to make my PCP look beyond a very painful back to find my MBC diagnosis. It’s very maddening, although maddening is a much nicer description than the one I’d use at home!
I’ve not taken Xeloda so I can’t comment on that but I do wish you well with this new treatment. Everybody fears the unknown so you are not alone in having those fears but the shitty thing is that no matter that we have all have felt that way too, we can’t help you process them and so in that you and each one of us is alone. I’m glad we can be here for each other to at least express them.
Thank you. It does help to vent and to be able to vent to people who can relate to exactly what you are going through. My oncologist told me to come see her next week so that I can talk this through with her and ask all the questions/ discuss concerns, etc. that I wasn't able to discuss after 'the blow.' I hope it will be a productive visit, even if it is a conversation that I don't want to have.
How awful it is when you dont feel listened to. Ive been on letrazole for about six weeks and the digestive problems are getting worse. I dread eating and am having to minimise dairy.
(My histology test showed ER, PR, HER2 positive so guess i have to keep on with letrazole or similar).
I have a friend who has terrible arthritis and can hardly walk for the pain. When im feeling down i think of her. She too has to switch drugs when one stops working.
But i know what you mean... theres no doubt its tough for us. Try and stay positive.
You mentioned that you have had to limit dairy while you are on letrozole. Perhaps you are lactose intolerant. Letrozole has lactose in it, so that may be responsible for your digestive problems.
It might be worth mentioning to your oncologist to see about switching to a different brand. I am not lactose intolerant, but I am thinking of doing the same thing. x
Yes, it is! I don't understand why these drugs have to have all these fillers in them. I switched Adcal D3 brands, as the first one I was taking contained soya. x
Sorry to hear about your digestive issues with letrozole. Has your oncologist said anything regarding how to mitigate it? I did not have arthritis on letrozole, but I definitely had stiff joints- just stiffness, no pain.
I am trying to stay positive. Thanks for the encouragement. Each day I feel a bit more settled and my mood is slowly lifting.
Hugs to you, as well!
Nama
You have had a rough go of it and I understand completely your frustration with your doctor. I am “the side effect queen” and I have to fight tooth and nail to make my doctor realize what I’m experiencing is real. The second she opens her mouth and says that’s not a side effect I want to shake her.
You feel free to vent and you scream if you have to I hope you can make a list of questions and send them to your doctor so she can answer them via email if you don’t have another appointment soon. You deserve to know all the facts.
I have not used this new med of yours but hopefully somebody here has. It’s hard not to feel like an experiment as each of us seems to have a little something different wrong that doesn’t follow their textbook treatment. Please know you aren’t alone in what you are feeling. I know words don’t help when you are sitting there feeling let down and tired. Keep posting here. These ladies are a great support. Keep us in the loop if you feel like sharing ❤️
All of your words and thoughts and insights are of great help to me.
When my previous oncologist dismissed my concerns/symptoms on letrozole- I wanted to say to her (yell, really) why do you take this and let's see what your experience is!? Let's do a clinical trial where oncologists without a cancer diagnosis take various meds and the side effects are monitored so we can get a clear understanding of how they affect the body without the cancer 'in the way.' Then maybe, they would understand that what we feel is real- whether or not it is listed in 'the manual' as a 'known' side effect. They can sometimes be so cavalier in their interactions with us.
I am walking in the exact steps that you are right now, so I can definitely feel your anxiety and fear of the unknown. I go see my oncologist on this Friday, I'm hoping for kisqali but could be xeloda.
I have been there and still am. I am tired of hearing this is rare side effect- what is point of that statement?
I took xeloda for a week and saw an allergist because rash started again.
I stopped it as I had rashes and hives worsening on ibrance and it had to be stopped. Onc agreed and
Did the genomic test sept. My her was negative, converted to positive. Also +pik3. I was scared to death starting Herceptin/ perjeta. Started having shortness of breath. Echo showed heart being affected- again, rare side effect. Now on cardiac meds.
I did research on the her conversion- it happens to 20%.
One known cause is femara which I took for 7 years.
Now- friday is next treatment but first another echo tomorrow to see if I can have it. Onc is stopping perjeta because of Gi issues.
Each of us is so different. My body does not handle drugs well. There is no way to know. My onc broke protocol when I started Herceptin- to try to lower risk of bad side effects.
Honestly, I don’t want to do it again- I have lost quality of life-was very active and now I have to move slow. Have lost days of work.
I am sorry my post is not upbeat. I know how you feel- we keep fighting the fight anyway, scared, anxious and falling into abyss at times.
I have to have someone with me when I see onc now. I stop hearing at points. It helps to have another set of ears. This can be so overwhelming, I know.
Hang in there. You may be able to tolerate xeloda. Give it a try. I get how scarey this is.
I appreciate you sharing. I wish you the best on your next steps. It is true that we are all so very different and each have our own reactions...and we each have our own unique and distinct breast cancer profiles. It is so confusing. And maddening at times. The unknown, The highs and lows. Sometimes I feel like I am on the verge of a break down. I usually pick myself back up- eventually, but it is hard.
My pace.and quality of life has definitely.changed. Little things I took for granted and used to be able to do with ease, are now not doable or leave me in pain- like carrying grocery bags, cleaning my house, being active with my kids.
I know how frustrating this is for you to change meds. I have been on Xeloda since April 2019, and really suffer from very few side effects. I do have dry rough feet and neuropathy pretty bad, and very cracked skin around my fingernails, but I figure I can definitely deal with these small symptoms. My tumor markers have gone WAY down, so that is definitely a good sign. In fact, my oncologist has not ordered a CT scan for 13 months because he feels I am doing good and not really the need for one. I wish you best of luck as you start Xeloda, and hope it will do good for your body with success. Wishing you a happier start to 2020!
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