All about Xeloda
Comments
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BevJen-do you eat before taking the Xeloda? It works best with less nausea on partially digested food eaten a half hour first. Carbs are best.
Some ladies put the pills into a gelatin capsule to slow down the disolving.
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Google taxotere and permanent hair loss. I don't know whether another chemo will be involved or not, except, of course, Xgeva on a monthly basis. it's very comforting to the rest of us that you have had so many of these infusion chemos and will be a wealth of information. Thanks, Denny -
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I thought I had read somewhere that weekly taxane infusions at a lower dose work as well as the 3 week taxane infusions with less toxicity.
https://www.breastcancer.org/research-news/20080417c
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Thank you, that’s very encouraging
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Joyner-I tend not to believe that stuff. I can honestly say that I have never known anyone who lost hair on Taxotere. It could be a very rare side effect. But verrrrrry rare. And, as we know, there's a ton of possible SE's with all chemos.
I had it in 2003 and it is standard tx for a new BC dx.
Agree that 1/3 of a dose weekly is easier. But it was really esy for me at every 3 weeks.
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elenas401-
I’m not in the clinical trial for Leronlimab. I was able to get it through compassionate use, since I had previously tested positive for CCR5 while trying to get into the other basket trial they did for any solid tumors. I replied to your PM, let me know if you didn’t receive that. I have so far had 6 of the weekly injections. I’m not even sure if it’s working because my CEA marker is still increasing.
Denny & Joyner- I did taxotere twice. First time THC in 2008/2009 - and again in 2015 TCHP. Lost my hair both times. My hair grew back perfectly after the first time, but not so great the second time. I have a full head of hair, but it is thin and fragile now. If you look it up on chemocare.com it does say it causes hair loss. There is even a thread here for women who have suffered permanent hair loss due to taxotere. I have heard that weekly taxol has less severe side effects than taxotere dosed every 3 weeks, so maybe less hair loss with taxol? I don’t know.
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Thanks, Denny-
Duzy, all of us were caught flat-footed at initial diagnosis of MBC. I agree with the others: once you have a plan in place and greater understanding, you'll begin to feel more in control. Good luck!
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Thanks, Myshadow-
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Myshadow....do you know if Taxotere caused the hair loss or the Carbo or Perjeta? I know that Herceptin doesn't cause it.
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Denny- As far as I know the carbo also causes hair loss. I did it in combination with Taxotere, but was informed both would cause hair loss. Since Perjeta is a mAB similar to Herceptin, I would assume it doesn't cause hair loss, but who knows? I didn't do it as a mono therapy. My hair started growing back when I was switched to Herceptin mono therapy.
Did you say that your Her2 status changed? My bone biopsy last year showed that I am now Her2 negative. A second opinion at another cancer center confirmed it. I still wonder if I might have a combination of Her2+ and Her2- since I also have brain mets that couldn't be accessed for biopsy. I guess I may never know until something else pops up. These are the thoughts that keep me awake at night
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MyShadow-yes, my recurrent chest nodes did change. I was on Kadcyla for them and it did make me NED in about 2 years. My onc gave me a 9 month break from Kadcyla and I was on only Herceptin. I then went back on K since my scan showed that the nodes were back.
And then the K didn't work. I had a Foundation One blood test and that showed that I had changed from Her2+++ to Her2- Somatic (gene mutation).
I did ask my onc what would happen when/if/when I have another recurrence, and he said that we would need a biopsy or test.
This is actually good news that the testing can show why our chemos failed. I know that they have been trying to perfect the testing for many years.
So that is why I am now on Xeloda since I changed to Her2 -.
What all are you on right now? I am on X and Herceptin.
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Well my news is I can stay on Xeloda another 3 months since my PET scan was clear BUT since my CA15-3 continues to climb (up to 768 today) the not so good news is there can be 1. Sub-clinical growth in previous areas while the tumor cells secrete more antigens. MO thinks we will possibly be seeing something in 6-9 months based on experience with other patients OR 2. Cancer is growing elsewhere (but not seen yet). I think it's better to stay on the drug that you know until it really gets worse- 21 cycles and 15 months so far. All side effects are bothersome but you have to figure out how to deal with each of them My recent concern with my eyes (with helpful comments from this group) has resulted in an appointment next week for an "eye lift" for my droopy eyelids. My eye doc had not heard of eye problems related to Xeloda but I told him my group says they have problems they can connect to the drug. He said I'm his first.
BevJen- Sorry for the nausea, I eat chewy ginger candy (dark chocolate also helps, I think). I assume you've tried Zofran. I just hate taking more meds than I have to. Mermaid007- I have never heard of anyone having to take 4000 mg of Xeloda a day, that would be 4 pills in the morning and 4 pills at night. The highest I've heard is 3000 per day (I started on that but am now down to 2500 with occasional days off in the middle of my 14 day stretch) You should recheck your facts and don't worry.
BTW- Does anyone have ILC? (Infiltrating Lobular Cancer). that was on my most recent scan before the tumor disappeared.
Thank you everyone for all your input and advice over the years. Nina
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I also like OTC Emetrol for nausea.
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NinaCa- I have ILC
my TMs climbed a little and the PET showed activity only in small area in right hip. I had that zapped last month and will see what happens.
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Hi Nkb, I just finished finding the ILC Alliance website to learn a little more about ILC. I didn't realize how different it is from IDC, only 10-15% of BC are diagnosed as such. I'm trying to track down old findings, I believe I was originally a mix of IDC and ILC but a recent biopsy only mentioned ILC. It was very clear to me that my "unheard of" cancer to the outside of my small intestine was very predictable for ILC- a string net of cancer cells that will wrap around and squeeze. I feel more enlightened than all the docs I went to when trying to diagnose my "digestive" problem, including MO and GI specialist. I'm glad it's a slow growing cancer but it is hard to detect when there. NIna
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Denny- my experience with Kadcyla is similar to yours. My scans showed no active cancer and my CEA was down to 1.8 which is normal. I took about a 5 month break because my ANC and liver function needed to recover. I did Herceptin only, but CEA started rising gradually, so went back to Kadcyla. Eventually progression showed up on PET/CT and then the large skull met and brain met on MRI. I was switched to Tukysa, Herceptin and Xeloda until the bone biopsy came back Her2-. Took Xeloda until progression in May. Now I’m doing Leronlimab and just started Faslodex. I will be adding Verzenio to the mix soon.
It’s odd that we both reached NED with Kadcyla then Her2 status changed.
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Good Morning Everyone,
I couldn't sleep this evening and did a lot of reading on this thread. I recognize several members on here that were so kind and informative when I started Ibrance and then Piqray. Each lasted about 18 months for me. With that said, I am on my 3rd cycle of Xeloda, I was informed that dosage on Xeloda is determined by weight and height. I am 5'9 and 161 lbs (was 135lbs but cancer treatments changed that). Anyway, my first cycle was 4,500 mg. I took 4 pills in the morning and 5 pills at night. When I got the meds, I called my cousin to have her look at the letter to make sure that I was reading it correctly and she confirmed that I did. I then called my oncologist's office and they confirmed same.
I had a reaction to this dosage of 4,500 mg. My face turned bright red on my 5th day and nausea really kicked in. To add, I developed a rash on my chest and was itching behind my ears. My MO lowered my dosage to 3,000 mg, 3 pills in the morning and 3 at night. So far, I have done better but still have light stomach and nausea issues. To add, my hair started to thin but that has slowed down. I am hoping to lower my dosage slightly more when I see my MO again. I just think this dosage is too high and after reading a lot of posts, I see many are doing well with lower dosages. Has anyone made a dramatic drop in dosage as I have described? I am asking for my own edification but will consult with my MO.
While I recognize that some people may not agree with medical marijuana, I do use it occasionally for my bone mets pain and more recently, have taken it for nausea. It has given me better relief for nausea than Zofran. Plus, it helps stimulate my appetite of which has really gone down since I started Xeloda.
JoynerL - I wanted to say that you are accurate with the information about Taxotere and hair loss. About a year ago, there were commercials informing the public of a class action lawsuit regarding the manufacturer not listing permanent hair loss as a side effect. Although, I understand and have researched that permanent hair loss on this chemo is very rare. I did the ACT combo for chemo and took Taxol weekly for 12 weeks. While I know everyone is different, I did well on this chemo and felt it was not as strong as the AC. For me, it was tolerable and the meds I received gave me no nausea during or after chemo.
This thread is very informative and I truly appreciate everyone sharing valuable information and thoughts about this treatment. Going to try and get rest.....
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MyShadow...I agree that it is weird. But looking back at my friends who passed away after their chemos failed, I feel bad that if the testing had been available back then, that they might have been able to go on another chemo that would have saved their lives. So we are lucky. Ggood lucky with the Faslodex shots....I hated those so much, but had them for 2 years until it was determined that those along with Kadcyla were not working. I also had severe lower left back pain from an unknown cause. I have had this pain now for 6 years and although it has gotten less severe, it still flairs up several times a day. It is unknown if Faslodex cuased it, though and more lickly that I was doing Pilates wrong.
Hoeever, some ladies do very well on it and it has kept them NED for many years.
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Njgirl, I am only on 2,000 a day and at 5'1", I am about 30 pounds overweight. And so far, X has kept me at NED for over 3 1/2 years.
Since I have been on chemo for over 19 years, I am a difficult case.
Not to be like a broken record, but if you saw my caution about eating foods high in Folic Acid.....please be careful. I feel so dumb that I endured open sores and infected toenails, etc for 3 1/2 years because I ate too many spinach salads, broccoli and dried beans.
It has now been over 2 months that I have been watching my Folic Acid intake and my feet are almost back to normal. NO pain!
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Denny- thank you and I agree about the Faslodex shots. Had my first dose on the 8th and second on 22nd. My left side has been extremely sore also. Left hip was original sight of Mets for me. Hoping it’s just the shots and nothing more sinister going on. My right side is fine though.
I also agree about the folic acid / folate on Xeloda. Beans were my worst enemy. Gave me terrible stomach bloating and pain. Ate a lot of potatoes and oatmeal
I should move along to the Verzenio thread now, since that is my next treatment. I wish you and everyone on Xeloda continued success.
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MyShadow. Thanks and good luck. But please check in from time to time to let us know how you are doing!
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Denny,
Thank you so much for that tip about Folic Acid intake. I will make an effort to monitor this. I will try anything to feel better.
I am so glad that your feet are better and that you don't have pain. That's really great news. To add, your story inspires me and gives me hope. Thank you for responding and I will let you know how I make out.
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njgirl....thanks so much! This is a good site to consult...FolicAcidNow.net.
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This is very interesting! I have a gene mutation, MTFHR, which means I metabolize Folate much slower. I also was eating a high folate diet, bananas, eggs, spinach, nuts. I am trying to eat less of these foods to see if my feet get better.
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ninaCA- yeah- ILC is the sneaky cancer that goes to weird places and most MOs don’t seem to treat it any differently. I wonder if In the future the treatment for ILC will be different than ductal. I asked my second opinion MO at UCSF if treatment was different and she said “ not once it is metastatic” They were doing some studies in Europe with Crizotinib - I do not know what has happened with those studies.
Have you had a Strata or other genetic test?
Even though only 10-15 % have ILC I have noticed with MBC at least on BCO there are so many ILC people. Odd?
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Hi Nkb,
I was going to comment earlier about the disproportionate number of people with ILC on BCO. I believe it’s a function of the nature of the disease as it tends to be sneaky but slow growing. That means that those with ILC are typically around much longer, continuing to post.
It’s easy to forget that the membership of BCO is not necessarily completely representative of the disease or availability/efficacy of treatments. The site is definitely slanted towards patients who are strong advocates for themselves!
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Hi everyone,
I'm on Xeloda for nearly 2 years and my MD wants to stop the Xeloda, since my scans and bw are all clear. The spots on my liver, which caused for me to take Xeloda, are stable for the moment. My BW was all good as well, no high increase in CA and CEA levels. I'm scared that going off the pill will cause more mets. Does anybody stopped Xeloda and does not start any other medicine? Does it cause more mets? I'm on Herceptin and will still be on it btw.
Thanks, All the best
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agharta...that is an unusual approach, unless your dr wants to give you a little break from Xeloda. Herceptin usually isn't strong enough to keep liver mets from growing.....at least not for me.
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Agharta, I surely am not an oncologist. I have been on Xeloda for 32 months, and so far it has kept me stable. I have my every 3 months pet scan on August 10th. It seems odd to me that he would take you off of something that is working. That would make me nervous, too, if I were you.
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hi everyone
I’ve been on xeloda for 5 cycles 2 at 3,000/day two weeks o n one week off. My rbc counts dropped so much I had two blood transfusions and 4 iron infusions so switched to one and one and labs are much improved. I wanted to comment on the idc versus ilc. I was diagnosed 8 yrs ago with idc with mets to most of my bones,I was on tamoxifen for 6 1/2 years then my tm’s starting creeping up and a year later a cat scan finally found the new mets all over the inside of my abdomen,on the outside of my colon,squeezing my ureter. It mutated to lobular and I was freaking out and my onc said it’s still metastatic the cancer just goes to stranger places we will still use the same meds. After 5 cycles my tm’s have dropped from 435 to 210 and my scans this week though not great showed slight improvement-well I’ll take that all day long. Any improvement is a positive in my book! I’ve learned a lot from this thread and thank you for all the great advice while I was lurking!
Kristin
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