All about Xeloda - Page 247 (2024)

July 2017 edited July 2017

Yes, Diana, we used those too because we have a dog. That's why we still have 18 out of our 20 bushes, 😉. If we didn't use the sonic sticks, they might have eaten ALL the bushes.

Dianarose Member Posts: 1,951

July 2017 edited July 2017

July 2017 edited July 2017

Thanks for everyone's input on my questions. Shetland, what you said makes a lot of sense. Like you, my TMs have always been very reflective of what's going on. But I hadn't realized until you verbalized it that the physical symptoms, whether pain or visible progression, often come after my TMs have been climbing for several months. So for now I'm simply going to believe that my falling TMs -- and come to think of it, less pain -- will eventually be reflected in improved scans.

Sorry you're dealing with added fatigue this cycle, Shetland. Hopefully, it's just temporary. We were fortunate to get away for 4 days last week, and I was amazed at how much we saw and accomplished each day. I was tired by the end of each day, but the change of scene and new things to experience definitely helped me push past the fatigue.

Beautiful roses, Ebr.

stagefree Member Posts: 360

July 2017 edited July 2017

Lita, oral chemo is more favorable in many ways.. but it has it's own issues to deal with.

Using a stomach protective med (preferably taking 2 per day) is a must. And insist on a strong kind. Mild ones don't work. Tried & true. After switching to an post-operation stomach protector, my stomach thanked!

Turkish grocery stores sell roasted chickpeas, we normally have with coctails with olives at happy hours.. they suck stomach acid and help the bad feeling and nausia.

If your stomach gets too upset, juice raw potatoes and drink it (tastes fine, no worries) immediately. The starch covers the inside walls of stomach and causes instant relief hubby's ulcers improved with it.

Xeloda always punishes an empty stomach, eat properly

Each chemo has a variety of SEs and one is not doomed to experience all listed on the prescription card.

Hope you feel better as X is a big and favorable (keeping hair) gun.

Hugs

Ebru

July 2017 edited July 2017

Hi everyone,

I have been on Xeloda for 12 weeks now and have my scans next week to see how it is working. While I am optimistic, I always like to be prepared with questions for my onc about the next treatment option, should we see progression. Despite being ER+/PR-/Her2-, I have not responded to any of the hormonal therapies (Ibrance, Faslodex, Exemestane). Do any of you know of good options after Xeloda?

Thanks for your insight,

Cita

July 2017 edited July 2017

Cita, if you've already had no success on hormonals, your onco will probably bump you up to IV chemo after Xeloda. I hope Xeloda works for YEARS for you.

My onco wants to move me over to a trial of AI's just to give me a break from X, but I'm not sure I want to do that yet. Why switch when X is still working? We shall see...

PHOTOGIRL-62 Member Posts: 274

July 2017 edited July 2017

Lita, how long have you been on Xeloda? Hormonal didn't work for me either. Ibrance, Faslodex just worked for 8 months then progression to the liver. I was wondering because Xeloda has brought all my blood work to almost normal. Just curious if you don't mind me asking?

Thanks Anita

July 2017 edited July 2017

I have been on xeloda for 14 months now.

If i am stable in August, MO wants to switch me over to Arimedex for a while to give me a break. Some women supposedly do well on it for a number of months. Not looking forward to achy joints and bones tho.

July 2017 edited July 2017

3-16-2011 Member Posts: 279

July 2017 edited July 2017

sheltonpony

Sorry it took me so long to get back to you. Yes, one of my MO' s say the red raised bumps all over my forehead was x working on pre cancerous sun damage. My other MO said it was a simple SE. All I know is the bumps are gone and my forehead looks better than when I was 25.

So I like the idea that x might be helping me in more than one way.

BTW the fatigue was cumulative for me getting worse and worse for me until they moved me from 2150 2x a day to 1650 2x a day. Now I have my old energy back.

I hope everyone can enjoy some summer. I am off to see green day with my 16 year old next week so excited.

Mary

Waitingforspring Member Posts: 11

July 2017 edited July 2017

August 2017 edited August 2017

So glad to see this new investigational study on 7 days on/7 days off dosing for Xeloda. I've read research on this dosing schedule in the past, but I believe it's mostly been with colon cancer. This new research specifically with mbc breast cancer patients might yield better dosing for us in the future!

http://www.practiceupdate.com/c/56159/67/13/?elsca...

Hi, Cheryl! Glad you've found us and introduced yourself!

Still waiting for UCLA to re-read the scans I had locally last week, but TMs took another dive this month -- CA27-29 down another 30 or so points, and CEA, which had been climbing for some mysterious reason, also dropped about 12 pts. Deanna

August 2017 edited August 2017

I've been 7 on 7 off since December 2016, and I find the dosage much easier to tolerate, altho I have been feeling very light-headed of late. Have a wrist BP monitor, and my BP has been in the low 90/60 range...still considered "normal" for very low for me personally. I've cut my atenolol pills in half to compensate for the BP lowering aspect of X. Could also be that my WBCs and RBCs are pretty low, too.

MO says no matter the dosage, X's SE's are CUMULATIVE. We're hoping for good results in a few weeks (next PET scan) so she can switch me to AI's for a bit and give me a break. So, fingers crossed ). If there's progression, it will be onto either Taxol or Abraxane (. Going to Hawaii come hell or high water in early Oct, so I hope it will be good news, but I can't stress out over it. I've heard (I could be wrong) if there's 20% or more progression, they switch you no matter what. In my last scan, I had some mild progression to more ribs, and the SUVs for lumbar spine were still in the 5-6 category, just as in previous one...MO didn't feel the need to switch me at that time.

Whatever's gonna happen will happen. Just trying to stay as positive as I can.

PHOTOGIRL-62 Member Posts: 274

August 2017 edited August 2017

Lita. You will get to Hawaii I bet. Hope progression isn't too bad. You are an inspiration to me. I have been on Xeloda since May and have had no SE except my elbows seem to be raw. I thought only your hands and feet. So far TM dropping and liver enzymes are all almost normal. I hope I can stay on this because like you I'm going to Africa in November come hell or high water!

Thanks for the info Deanna. My MO told me that the dose I'm on 1500 twice a day is like getting three weeks out of it. I still don't understand that. Maybe has to do with body mass and weight. I have no idea. Just keep popping those pills hoping for good results.

Cheryl. Glad you have joined us. You will find so much comfort and security and help with all of these great ladies. I get so much comfort from them and might have lost my mind if I didn't join this group. They are wonderful!!

Hugs to all!!

Anita

Bliss2521 Member Posts: 3

August 2017 edited August 2017

Hi All

This is my first post. And I am writing this for my mom who is 57 years old.

After being diagnosed with Stage 4 bone mets in March 2017 and having gone through a complete hip replacement surgery and now being on Xeloda (1500 mg twice a day), she has become very weak. No appetite. No sleep. Can't sit for long, can't lay down for long, can't walk for long. She feels that she has become hollow from inside.

I am trying to get some advise from a naturopath because doctors have no further treatment. Just a few months ago, she was fine, the cancer was in remission and then all of a sudden it came back with sheer power.

Can anyone please advise if there are ways to deal with this fatigue, insomnia, weakness, loss of appetite etc...

Regards

Nouman (for my mom)

ShetlandPony Member Posts: 3,063

August 2017 edited August 2017

So I'm done with that other non-cancer med and am back to just normal tired, which I know how to live with. I think I am indeed more tired on my third X cycle than at the beginning, but I feel I can work with this. That other drug gave me added tiredness and, what is actually on its list of common side effects, "discouragement".

Amy, Xeloda has been around a long time, so I do think your onc will know how to adjust your regimen, and use remedies for side effects, so you can have better quality of life and still treat the cancer. Oh, you will have had your appointment by now. What did she say? Stagefree, it sounds like you and your onc have a monitoring plan that works for both of you. Focusing on your beautiful roses and other things that make you happy is a very good thing. Cita, Aromasin + Afinitor is another hormonal therapy option, but it may be the cancer is not responding to those now. I am where you are, with Xeloda, and I know there are several chemo options for later. But let's see what your scan says. Hopefully X is working for you. 3-16 how cool that you and your teen are going to the concert together. A good music group is not for just one generation. Yeah, I also feel that X could be helping me in more than one way. A couple patches on my face and something on my arm, that I was going to show the dermatologist, are gone. And since X is used to treat colon cancer as well as bc, I am less afraid of getting that. (I have a genetic mutation that increases risk of cc.) Waitingforspring/Cheryl, welcome. Deanna, hooray for dropping TMs! Doesn't that just make you feel like you can relax a bit more? Change of scenery is a great idea. Photogirl, I am looking forward to seeing some of your photos from Africa. Because you will be going there.

Hello, Bliss. Let's try to help you and your mom. Can you say why she is unable to walk, sleep, or eat well? I mean is she in pain? Just too fatigued? Is she unable to eat because of gastrointestinal troubles like nausea or diarrhea? Have you and she talked to her doctor and nurse about these things? Why do the doctors not have any further treatment? Are they recommending hospice? What treatments has she had in the past? What kind of bc? Sorry for all the questions. It might help us to answer if we had more details.

August 2017 edited August 2017

Hi everyone! I will be receiving my first shipment of Xeloda tomorrow, as the Ibrance/Fasolodex treatment stopped working for me, and I now have mets in my liver. I feel pretty decent; just have mild bone pain most days. I look forward to reading more of the blog, but wanted to jump right in.

Lynn

kickingcancersbutt Member Posts: 5

August 2017 edited August 2017

ShetlandPony Member Posts: 3,063

August 2017 edited August 2017

Bliss2521 Member Posts: 3

August 2017 edited August 2017

Hi Shetland

Thanks so much for addressing my concern.

My mom was diagnosed with Breast Cancer (Dx 12/2013, IDC, Right, 3.5 cm, Stage 3, ER+/PR+, HER2-) and went through surgery (mastectomy) for her right breast and then chemotherapy and radiations. Then she was on Femara (Letrozol). In Sep 2016 her scan revealed that the cancer was spread to her bones (Dx 06/2016, Stage 4, Bone Mets, ER+/PR-, HER2-) and then Femara (Letrozol) was replaced by Aromasin (Exemestane). But that didn't work and in Mar 2017 she went through complete hip replacement surgery. And then she was put on Xeloda (1500 mg twice a day). In Apr, May and Jun she was fine but since July things started getting worse and now she thinks that she can't take it anymore.

Yes, my mom is unable to eat because she feels nauseous and although she doesn't vomit but still that feeling makes her feel not hungry.

And she can't sit or lay down or walk for long not because of pain but because of lack of energy. She feels tired all the time.

In addition to all that, she now can't sleep, even after taking sleep medication - Lexotanil (Bromazepam) 3mg

She also feels pain in her jaws and as a result can not chew the food but can do nothing about it.

We did talk to doctors about all this but my mom lives in Pakistan and the doctors there are terrible. There is no concept of hospice there and doctors only prescribe the medicines and nothing else, no guide for nutrition, exercise, emotional support or any other thing. And for this particular situation, the only thing doctors say there is that "due to the nature of illness, these things happen and that's it" (pathetic)

I am seeking an advice of a naturopath here in Canada and she is of the opinion that my mom needs to go raw green and although chemo can be continued but it's not doing any good. However, the nutritional stuff the naturopath talks about are not available in Pakistan. My mom has a visa and I want to bring her here in Canada but she is not in a position to travel for such a long time. (it's a 17 hours flying time).

So, I am confused and really worried as to what should I do...

Regards

Nouman (for my mom)

minxie Member Posts: 239

August 2017 edited August 2017

RosesToeses Member Posts: 244

August 2017 edited August 2017

Hey everyone, I know I almost never post these days, but I wanted to pop in and update. After 20 easy months on Xeloda I've developed significant progression in my lungs and am moving on.

I know a lot of people ask what's next if Xeloda stops working. For me, my onc had discussed Doxil which is IV by low on side effects, but at this time we're not using Doxil but instead going to a combination of Gemzar and Taxol to hit the mets hard since they're effecting my breathing.

I wish you all good luck on Xeloda. It was good to me for a long time and I hope it does the same for you all!

goldie0827 Member Posts: 6,830

August 2017 edited August 2017

Roses, I hope the new treatment helps you.

I too have not posted here in quite some time. I've been on X for over 2 years. This past weekend we went to a trade show in Las Vegas. Main reason, which had nothing to do with our business, but there were companies there that sold hemp/cbd products. I got to talking with these gals and they gave me a jar of salve. I can't tell you how it's helped my HFS. They are 50%75% better, in less than a week of using it. By the end of the day, if I have been doing a lot, that involves my hands or feet, then yes, they are a bit red. I notice most of the difference in the morning. Hands and feet have relaxed all night with the salve on them, but no redness at all.

It costs $39.00 for 1.7 oz But I think it's worth it, and if I'm still on X when this runs out, I'll probably be getting more. Not sure how long a jar will last. I put it on 2-3 times a day.

I get NO KICKBACKS on this! The product is called Salvex.

https://www.c3globalbiosciences.com/product/salvex/

Waitingforspring Member Posts: 11

August 2017 edited August 2017

Waitingforspring Member Posts: 11

August 2017 edited August 2017

ShetlandPony Member Posts: 3,063

August 2017 edited August 2017

Bliss/Nouman, do you have any way of getting a second opinion oncologist for your mom?

To start, have you seen the information on chemo nausea here on BCO? And are anti-nausea medicines available to your mom if recommended by her doctor? The second link gives the names of some. I would think these would be more important than the raw green things.

http://www.breastcancer.org/treatment/side_effects...

http://www.breastcancer.org/research-news/updated-...

ShetlandPony Member Posts: 3,063

August 2017 edited August 2017

PHOTOGIRL-62 Member Posts: 274

August 2017 edited August 2017

Shetland, I haven't noticed any new hair growth yet but instead of shaving it get it waxed. When I was put on Ibrance and Faslodex my MO mentioned something about hair growth because I remember asking him if I would end up with a full beard. He laughed and said no. But I'll keep an eye on the sides of my face. My sister always reminds me to pluck the chin. I did notice my one eyebrow is thinner than the other. This last appointment with my MO he asked me if I was losing hair in Xeloda. My hair sheds anyway but not to noticeable. Seems like with this drug it's not a hormonal drug so it's strange that your getting facial hair. Keep me posted. I know it's not funny, but I don't want to stand next to my husband in the morning with both of us shaving!! Good luck.

Anita

August 2017 edited August 2017

I've been on Xeloda for 14 months, and I have not noticed any new facial hair. I have had to pluck some chin hairs on occasion, but that's just natural post-menopause stuff...but I don't quite consider myself an old crone yet.

If anything, I've lost hair in certain parts of my body, that a lady never mentions, since I've been on Xeloda. Also a tiny bit of thinning at the forehead hairline and a little in the back. I keep my hair short now because I just don't have the strength to do all the blow dryer/curling iron crap anymore with the damn fatigue and all. I also wear a hat outside because I've noticed LOTS of new freckles and blotches with X. Plus, when I transition onto the next IV chemo, it won't hurt so much when I have to say g'bye to ALL of my hair.

August 2017 edited August 2017

Sorry for grossing everyone out...yes the affects of pill-form chemo are indeed cumulative. This is the worst my feet have looked after 14 mos on X. They throb, sting, and burn. I slather them with cream and wear socks all the time. They had been doing pretty good up until the last couple of months - minus toenails of course. So what has changed? I STOPPED drinking green tea and taking tumeric capsules while on X. Tumeric and green tea are anti-oxidants. I found out that one should not consume these while on a cycle, but they can be consumed on your off weeks. You want to oxidate and KILL the cancer cells. Taking an anti-oxidant while you're on cycle defeats the purpose. I hope those evil cancer cells are dying off just like my skin cells.

Layers of dead skin are falling off my toes, too. I spared you that shot. 😜 No one needs to see that. Question for the long-timers...do the toenails ever grow back? Guess I'm going to have to wear close-toed shoes when I go to Hawaii in a couple months.