All about Xeloda
Comments
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@denny123 Hmmm I guess the info was lost in translation conversation with MO. Like you I always read the notes after each appointment. Much of the info remains the same. But I always search for the notes of the most recent symptoms /info I relayed to her at my most recent appointment. It is so weird how the cancer can be different from the original.
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I don't remember if I ever asked my oncologist why I am still on Herceptin. We always have so much to discuss. I have asked my nurses, who did tell me that a lot of patients who were Her2- were on Herceptin.
The poor MO had to do a lot of digging to find 23+ years of my treatments.
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Is anyone out there? This forum keeps changing and it is hard to find my preferred discussions.
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@denny123 Hi, I'm here and I regularly read the forum threads.
I hope you're well and not suffering too much from the heat. The thermometer climbed to 36° Celsius yesterday, and it's becoming a pain. Fortunately, a few thunderstorms refreshed the atmosphere and brought joy to the vegetable garden.
I'm tolerating Xeloda better and better (soon 7 months) and my next scan will be on July 2nd, ...fingers crossed. My markers are still down, although out of the norm, but it's going in the right direction. I wish you a wonderful start to summer.1 -
@soldanella Great to hear from you! I had to look up celsius, since we do fahrenheit. And we are the same…in the 90's and very humid. We will have 4 days with storms now and then, and then 4 days of very hot and humid with no rain.
My veggies are doing okay, though. I am always trying to stay ahead of the rabbits, deer, chipmunks and squirrels, though. Darned things love to munch on my veggies.
I'm glad that you are doing well on Xeloda. I had not eaten bananas for several years since they are high in folic. But I decided to try one small one a day and they aren't bothering me. And I went up to 2 eggs a day, instead of my usual one per day. So it takes some experimenting.
My new chest port is great and I no longer have any problems when I get my Herceptin every 3 weeks. My last CT scan was still NED, so I've been NED now for 7 1/2 years on Herceptin and Xeloda.
My onc retired but everyone loves his replacement, who I will see in August.
Denise
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@denny123 It's great that the Herceptin infusions are going well. I'm happy for you. Well done for these 7 years of treatment.
You have a lot of predators eyeing your vegetable garden...here I fight with slugs and snails. My cabbage leaves are full of little holes...but it's still growing.
I hope you have a good relationship with your new oncologist; it's so important.0 -
@soldanella I used to try to grow cabbage when I had a garden in my backyard. And I had the snails and slugs too. Now I have containers on my back porch railing and grow bags along the back of my house….with wildlife netting in front of it.
Where do you live?
We had 3 of the oncologists who retired, and got 2 new ones. My onc sent me to the one who is most like him. This new one is very personable and knowledgeable. There's always so much to discuss, so he should be perfect for me.
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Hey ladies, I'm so happy y'all are doing well. I'm on my last cycle of Xeloda, I'll finish it tomorrow! It hasn't been too bad. I still have my fingerprints! I do get intestinal upset from time to time but I can live with that. The fatigue is ongoing but it too will come to an end. I have two more infusions of Keytruda, then radiation to deal with. Hopefully at that point I'll be done and there will be no reoccurrence!
I live in Louisiana where it's currently 88°F. That's only because there's a cloud cover and thunderstorms around, otherwise it would be over 90! I don't have an outside garden but my brother does. He has to keep an electric fence around his to keep the critters out. I have a hydroponic Gardyn in my dining room. they are super expensive but I got it for 25% off over the holidays. I grew some good makings for salad but chose not to eat it because of the folate. I can't wait to grow some more when I'm able to enjoy it.0 -
@denny I live in Switzerland, in the city of Lausanne, but we're lucky enough to have a small rental in the mountains, and the landlady has allowed us to start a small vegetable garden in front of the house. (Altitude 1,600m). For now, the deer leave me alone; we'll see in the fall when they come back down from the mountain. This vegetable garden is a real source of joy and relaxation. I think I invest more than I reap. People in the village say it's not worth it, but the happiness this vegetable garden brings me is priceless.
When I don't have time in the morning, I also have a banana and a hard-boiled egg before Xeloda, and it's fine. It doesn't cause hand-foot syndrome.@justsnapd8 I had to look up what a hydroponic garden is! It's very interesting, and soon you'll be able to enjoy your salads. It's great that you're reaching the end of your Xeloda treatment without too many side effects. A big step forward. May all these treatments soon be behind you so you can resume a normal life.
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@soldanella How neat to live in Switzerland! I live in the USA and it looks like we all will soon lose Medicaid, and thus be unable to afford our chemo.
I am so excited that I will soon be able to pick my first yellow squash! I planted 35 feet of squash last year and the squash bugs destroyed almost all of the plants. I only ended up with 4 butternut squash. But this year, instead of growing them in the dirt along my driveway, I planted them in fabric grow-bags, and I haven't seen any of the bugs so far.
Sure is a challenge and with so much rain lately, weeding has to be done daily. But, I do enjoy it.
@justsnapd8 I also had to look up hydroponic gardens and they sure do look neat. It showed a chart of what can be grown and I do eat most of those veggies.
So happy that you will soon be done with your treatments! Mine will go on as long as I can afford them.
My weather in PA is just like yours, and TG for my A/C.
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@denny123 I'm following the news and indeed things seem to be getting more complicated for your Medicaid coverage. What does this mean for you?
In Switzerland, health insurance is mandatory, very expensive (it increases every year), and people complain about each increase. But when you have a serious illness or surgery, you're glad it's covered. Until now, my insurance has paid for the treatments even though they were barely approved. Otherwise, I would have had to give up.
My zucchini are growing. I have long, round yellow ones, and the same goes for the green ones. It's a bit like a jungle in the vegetable garden, as it grows and takes up so much space.
I had a follow-up scan this week, I'm waiting for the results and I hope to be able to continue with Xeloda.1 -
@soldanella It's horrible here and Medicaid will be cut. I am on Medicare, Medicaid and food stamps and they all will be cut or eliminated. King Trump has cut cancer research and clinical trials. My chemo costs $20,000 a month and I only get $1,180 a month in Social Security.
When he cuts Medicaid, hospitals and nursing homes will close down. We are pretty much doomed.
Sorry if this offends anyone, but I have been in discussions with several oncologists and doctors and those are the facts.
I only got one yellow squash from my garden besides the lettuce and green onions that I have had for months. Seems like I have to fertilize the squash blossoms myself.
Good luck with your scan!
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@denny123 What you are telling me is very sad and makes me angry! This guy doesn't realize that he is condemning his own citizens instead of protecting them. This world is going crazy.
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@soldanella I agree! My good friend was on a clinical trial that was stopped. Now my friend is dying and in hospice. I have another friend who has been in a nursing home for 20 years since she has severe MS. And now the nursing home has to close. Where will she go? She has no relatives to help and requires full care.
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@denny123 MAGA! This is a bad joke. I feel very sad for your friends. What you're telling me chills me to the bone. I also have a mother in an institution for severe dementia and I don't know what I would do if I were faced with this situation. My heart goes out to our Breast Cancer community on the other side of the ocean.
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Thanks. It is so much worse than what you have heard and the plan is to do so much more harm to those of us who aren't billionaires.
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@denny123 As a MAGA voter, I must ask you to stop with the doomsday comments. But in all fairness to the people who may read your fear mongering comments, they should know the other side as well. Your Medicare is not going anywhere and neither will your Medicaid. I don't know if all of your treatment will be covered, but I hope it is. If you qualify for SNAP, it will be available to you as well. For Medicaid and SNAP, they have added work requirements for the able bodied. That's not you. They are doing everything they can to protect American citizens. The facts are here https://www.whitehouse.gov/articles/2025/06/myth-vs-fact-the-one-big-beautiful-bill/ run start over
America is in debt up to it's eyeballs, and cuts have to be made somewhere. That's just a fact.0 -
@justsnapd8 You obviously haven't read the notice published by the American Cancer Society. You really should. My neighbors, husband and wife both work for the welfare department and I know what is true, and you don't.
The states will be required to fund SNAP themselves and I don't know of any of them that can afford to do so. At least 300 hospitals will close down with the Medicaid cuts. As will a lot of nursing homes. Shame on you for not caring that so many of us will lose our coverage. I am sure that the billionaires need more yachts.
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@denny123 I am not going to debate this with you, especially not here.
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@justsnapd8 @denny123 ok, you're right, this is not the right thread to discuss this topic. It might be a good idea to start a new thread (unless one already exists) to discuss with people who are having problems with their insurance and offer solutions.
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@soldanella No problem. I have been a volunteer counselor for the American Cancer Society Reach to Recovery program for 23 years. And I am privy to the facts.
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Hello everyone, I hope everyone is doing well on Xeloda right now.
My scan at 6 months of treatment is encouraging: no recurrence of the disease, all my metastases are quiet, and my markers continue to fall. Only my bilirubin is constantly rising, but it doesn't require stopping treatment for the moment. I will be able to fully enjoy this summer. I wish everyone such good news.
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@soldanella That is wonderful news! Enjoy your summer! ☀️
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@soldanella Congrats, this is fabulous news! May you have continued success with X.
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Is there anyone here who also posted on the Stage 4 thread? I can't find it anymore. I just wrote to the moderators. I wish that they had not changed everything on here since I have been on this site since about 2003.
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Hello lovely ladies, I have been reading many of your posts and hoping to predict what to expect with treatments but things have been constantly going down hill 😫
After stage 4 diagnosis in Feb 2024, I was on Ribociclib and Falsodex for 10 months and that stoped working progressing cancer to the liver.
I was put on Tamoxifen for 4 months and that didn’t work at all 😡 tumor markers increased insanely, liver tumor spread, and new liaison behind my eye discovered causing diplopia.
I also went to Germany for Dendritic cell therapy in April, but with everything that’s happening unfortunately I am not sure if treatment was successful or not.
In May I had 5 radiation sessions behind the eye and that fixed the vision problem, I also started taking Capecitabine and hoped and prayed that everything will get stabilized finally, but after only 3 months things took a turn.
Tumor markers going up again, double vision is back, I am experiencing shortness of breath and dry cough. CT scan is saying it might be cancer progression on the lungs but it looks more like an infection as I also had pneumonia in May. So I have no clue what to believe. My oncologist doesn’t seem to be concerned about my lungs.
But the interesting thing is when I am off Capecitabine cough gets bit better so I am wondering if any of you lovely ladies has experienced similar symptoms??
Today I also had liver biopsy and now it’s the waiting game to see what next treatment will be as Capecitabine doesn’t seem to be working.My Dr. also wanted to check if tumor has changed the original characteristics (In 2022 at the first diagnosis it was ER/PR+ HER2-) so she is hoping if things changes it will open up options for some new treatments.
Also since I am in Canada, our medical system has gotten so bad in the last couple of years and options are extremely limited, it seems they follow the same protocols that have been followed for the last 15-20 years, while I feel in USA and Europe options are so much more available. So deepening how things go and what all scans and test show, I might again look into something outside of Canada but cost is absolutely insane.
Anyhow if someone could comment if anyone had dry cough and shortness of breath while on Capecitabine, that would be truly appreciated !!Thank you all in advance 🙏
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@vik2ri I'm sorry that an effective treatment hasn't yet been found to combat the progression of your metastases.
I've been on Capecitabine for 8 months, and so far, it's keeping my metastases at bay. I don't have a dry cough or shortness of breath. I can do short, hour-and-a-half uphill hikes at a leisurely pace. During my follow-up, the oncologist always asks me if I have breathing problems; it's important to him.
I recently read articles that explain that lung infections can promote the development of metastases. This is what happened to me after Covid in 2023, my metastases had then spread to the liver. This was partially resolved by IV chemotherapy.
I hope you will soon have a solution to improve your symptoms and slow down, or even reverse, the progression of the disease.0 -
@vik2ri Sorry that you have had so many problems. I have been on Capecitabine and Herceptin for over 7 1/2 years. Sometimes I have a cough in the morning, but it just seems to be allergies.
Good idea to check to see if your properties have changed. I was ER+, PR-, Her2+++, until about 10 years ago. But now I am Her2-.
I do have double vision at times but it seems to be related to the fact that I have post-prandial hypotension. That means that after I eat, my BP tanks very low and it affects my vision. Then as my BP rises, my vision improves. I think that is unrelated to my BC, but no one really knows.
Good luck and please keep us posted.
Denise
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