All about Xeloda
Comments
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Hi, I'm just starting my 2nd round of X as my second-line treatment, after Faslodex + Ibrance seemed to do spectacularly well for me at first but then showed progression at 8 months. Bummer - that was a very manageable combination and I was so hopeful after a scan only 4 months before had showed my numerous bone mets all showing signs of healing. Ugh!
I'm on a 1 week on/1 week off schedule of X, at 2000 in the AM and 1500 in the PM. My first cycle went OK, just mild nausea at times and some stomach cramping. The incredible thing was seeing my back and leg pain diminish even in that first week. I thought I was imagining it but 2 oncs have now confirmed it can take effect that quickly. My next question will be whether the pain can come back just as quickly, on the week off? I swear I started to feel the bone pain again by the end of that first week off. Anyone else have that experience and is it even physiologically possible?? I've just started the 2nd cycle today, so we'll see if it happens again.
Re dosing: I met with the head of the big cancer research center here to get a 2nd opinion on what to do after Fas/Ibrance, and he explained they really don't know yet the best way to dose Xeloda. He has patients on at least several different levels/frequencies: one at the traditional 14/7 day approach, others on the 7/7 one I'm on, and still others at a lower, constant dose. Seems like a lot of it is based on how people tolerate the different combos.
I also wanted to add to the different-instructions-from-different-providers issue. My MO's nurse actually gave me all sorts of cautions about Xeloda, including the handwashing thing but also to be careful about bodily fluids and to have my husband use a condom! I found the latter pretty extreme (and depressing; he had a vasectomy long ago and my ovaries were removed in July), and when I asked my MO and the specialty pharmacist (who checked with other pharmacists too), neither had ever heard of that being necessary. Has anyone else? I'm thinking she was basing it on possible effects from chemo generally, but since I've never had chemo before, I'm not sure.
Glad to have another great community for this new ride. The folks over on the Ibrance thread are great too, btw! Incredible breadth of knowledge and generosity of spirit.
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Not to say that tumor markers necessarily correlate directly to cancer cells, but my wife has taken considerable breaks off xeloda, and even during the added time off, her tumor markers continued to fall at the same rate as when on. It makes me think the killing power of xeloda extends beyond the time period that you are on the drug. Xeloda is an antimetabolite. In layman's terms, a faulty building block for cell division and growth. Perhaps it puts a flaw in the tumor cell that doesn't necessarily cause it to die immediately? I am saying this in support of the idea that if the xeloda is killing off tumor cells, and that is bringing you relief, the tumors may continue to regress well beyond the week you are on.
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Hi Xeloda friends! Looks like I'll be leaving you! I've been on it for a year and I'm so sad because it has been so doable. Also scary to go on to something else which will probably make me lose my hair again and you never know how well you will feel on it. I am feeling and looking so well but my last scan shows some pleural thickening and fluid where I had it before. My Oncologist is talking about Erubilin or Halaven which is newly available in Scotland - has anyone been on that one? May I wish everyone well with Xeloda - I'm sure I will have a wee look on here from time to time
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Haven't been on this forum much for the last one and half week or so. My wife was trying to get into SOLAR-1 trial but we found out today that she does not have the necessary PI3KA mutation. So on to Xeloda. Please wish her luck.
I wish all you ladies good luck on Xeloda and hope it keeps your disease under control for many many years to come.
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Letmywife, I wish your wife good luck with Xeloda! I pray she gets a very long time on this drug!
I am not doing a trial because it was a dose escalation trial. So I am already taking Letrozole and we will add Ibrance soon. I didn't want to take Ibrance while I was still healing from my ovarian surgery.
Robin
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Thanks for the good wishes Robin. Not participting in a Phase 1 trial makes sense when you have an excellent option like Ibrance to try out.
My wife lasted about 6+ months on Ibrance but many manypeople are getting excellent results out of it. Best of luck.
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Hi All,
I've been reading but not posting much as I figure out how I'm reacting to x.
I had my first week on last week- now having my break. I've had a little nausea, a little diarrhea yesterday (week off) and a little hand tingling. I continue to have some dizziness that began before treatment- so I'm having MRI Wednesday.
I do have one question- has anyone had arthritic type joint pain? My hands started aching just a few days into treatment. My right middle finger is stiff and very achy. Is this a se of X?
I'm very encouraged by those who have been on this treatment for years!!
Thank you all for all your help.
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Hi Kaption. I have also had issues with arthritis in my hands on Xeloda. I have one finger that it stuck in an "L" position every morning (trigger finger). Doctor said this is normal because the hands are inflamed from the treatment.
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According to the list of side effects that I read yesterday, joint pain is one of them. I was looking because my shoulders started hurting a lot yesterday, like back a few years ago when I was struggling with arthritis-like symptoms and no one would believe me. Like Kaption, I've been reading rather than posting while figuring out how I respond to x.
When I started back in December, I was slightly nauseous all the time, but that was pretty much it. I lost a few pounds over that time, but I could afford those and didn't complain. I got through the first 2 weeks on / 1 week off and started on the next. My onc had me on 1000 mg twice a day. Five days into the second round I got taken off of everything until I had my CyberKnife radiation at the end of January. That left me with nothing for four weeks. I restarted x on February 2 with no nausea or anything else to bother me. I had a PET scan on the 6th and wasn't particularly shocked to learn that pretty much everything progressed since the scan on December 5. I was disappointed that my liver has joined the club.
What brought up the joint pain is that my onc has doubled my dosage and that seems to have brought on the joint pain. I've jumped from 2000 mg a day to 4000 mg a day (split am/pm). The only other difference I've noticed is that I am much more tired. I've started napping during the day, which is a good thing since I don't get enough sleep at night. How else to explain this post at 3:45 am my time. Tonight I think I'll actually manage to go back and get more sleep. Usually I wake up at 4 am and that's it. No more sleep.
Think of me tomorrow as I'm getting a port put in. More on the reasons for that when I get more details in another week.
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Thank you, JFL and rgc. Yes, I've also had the trigger finger and the sore shoulders. I had seen joint pain on the se list, but didn't remember it being mentioned here much. Arthritis is something that has been very common in my family-both RA and OA. (Cancer is NOT common). Anyway, thanks for sharing.
Rgc, I hope your new dosage gets you better results. I think someone here mentioned that dosages on X are still a mystery. Guess that's why KU Med is running the trial I'm in. That balance of results and QOL.
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Kaption finally – good for you. What about Herceptin with Xeloda. That's the plan my daughter is on. Good luck on the MRI, it's good you checking it out.
Believe51 cheering you along.
Rgc77 love what you said about being a Human and not just some statistic. So true.
Lita I will check on the other thread but any news yet?
This past week D's blood #s tanked totally, she could not have treatment, she is on Xeloda/Herceptin/Ixempra. Xeloda 1000mg 2xday.
She ended up at the ER on the weekend, because she was short of breath too. Her WBC was .3, Her ANC 0.6, HGB 7.5 I honestly don't know how the office let her walk out. They were gonna schedule her for a transfusion but then she ended up at the ER. She had a shot of Neulasta and that's when it started getting better. Today she was at WBC 33. Insane.
Question: Did anyone have such issues? We are trying to figure out if it's the Xeloda or Ixempra. I am afraid soon enough Onco will take her off one or the other or both.
Also, she had an MRI done to the cervical and upper thoracic due to numbness in her arm. Report came back as disk protrusion. Surgery recommended. We freaked out, surgery is always an issue, but to such a delicate area C6 T1/T2, it was a scary thought. We got a 2nd opinion, and RO looked at it and said, it's not surgery, but it's a lesion it could be radiated. So back to D's RO, she had not seen the images, just the report from radiologist. When she saw it, she said yes sure, but looking at Dani's records, she had rads to the region already, so new rads will have to be a lesser strength. And there is 50% loss of vertebrae, but that we will wait long, Onco said absolutely she cannot get off chemo.
This is the back and forth for weeks already. My mind is not working well.
Letmywifel hope your wife will feel well with Xeloda. It could be a good treatment.
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Continuing on the same note i would love to hear your opinion - is it the Xeloda or the Ixempra that is making her have such a big dip in her blood levels? They both were started at the same time? I am thinking if Onco will get rid of one.
And with all that, today insurance denied the urgent Neulasta that she needed. yep they obviously prefer to pay for a few days stay at the hospital. As is she ended up at the ER. They are really crazy.
Hugs to all.
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Looks like I will be joining you. I did 3 months of A/A and now we are moving on. Thought Dr said 3 on 1 off but that doesn't sound right...I am meeting with the nurse for Education next week, guess I will find out more then.
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My wife's BC history. My wife refuses to use the internet, well except for Amazon and Ebay.
Results of recent PET scan show multiple progression on spine. Oncologist wants a biopsy as soon as possible and will probably recommend Xeloda. If it doesn't work I'm afraid progression will have gotten out of control. I know Xeloda seems to have a lot of issues and perhaps the women that tolerate it well don't comment much on the forum? I'm very much afraid for her.
Complex case as she has had 3 different types of BC: ER+ 100% estrogen grade 1, ER+ 30% estrogen grade 3 and triple negative Metaplastic BC.
My wife, back in Dec of 2012 was diagnosed with Stage 4 ER+ PR+ HER2-breast cancer. One node and a small spot on the spine. After 3 infusions of AC she was clean except for the 6 cm tumor in her breast. The oncologist said since the cancer was responding well to estrogen blocker (aromasin) it was best to leave it be. Ops forgot to mention in the midst of all this cancer stuff she had to have removed a grapefruit sized and very painful non-cancerous ovarian cyst.
A little over a year later, Nov 2014, the cancer morphed and went crazy. She had a radical mastectomy and breast removal. A biopsy showed it to be ER+ and the oncologist prescribed tamoxifen. 19 lymph nodes were removed and 9 of the 19 had triple negative Metaplastic keratinized squamous carcinoma. A PET scan done after the surgery showed some cancer still in her armpit, probably spill over from the nodes. She has three cancers, one ER+ PR+ HER2-, 100% estrogen, grade 1 and inside that was ER+PR+HER2- 30% estrogen grade 3 plus the triple negative. She went back on A-C (lifetime amount), no Taxol as she almost died from it earlier. Almost died from NeuLasta too. Also 7 weeks of radiation.
After all that she had to have major surgery to remove a tumor from her kidney. Eighty five percent were cancerous but hers was benign.
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Mike- you and your wife have been through a lot. I am hopeful that they might find something to give you a bit of a breather.
As far as xeloda is concerned, I have been on it for over 4 years. At first it was combined with a Her 2+ targeted treatment but for the past year I have only been in xeloda. I have been NED for the most part for all of the past 4 years. I tolerate Xeloda well. I did do one dose reduction but have remained on my 14 on 7 off schedule for the entire 4 years. It has SE but I live with them as it is keeping my cancer at bay.
So I hope I can offer you a bit of hope that Xeloda can work for some people.
Best wishes
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Leftfootfoeward. Thank you your words of encouragement they were just the thing I needed. I used to live in Tacoma and commuted to work in Seattle (Ft. Lawton). How is the old Dog House doing. I guess the Renton "S" curves are still a traffic nightmare.
Mike
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yes Mike they are. The whole i495 corridor is a mess. Expensive to drive too with the tolling system. I avoid it as much as possible. Downtown Tacoma has become a lovely place to visit/dine.
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Mike what a story? How are you guys dealing with it? How is she feeling now? These surgeries take so much out of a person. Mike when you say Neulasta almost killed her, what do you mean? Because my daughter just took it, she usually gets Neupogen, but was not working. She does feel a lot of pain. Xeloda is known to have helped a lot of people, that I can tell you. So how is your wife treated? Which type of BC?
I am afraid Onco is trying to get rid of one of D's treatments, we got a message that due to the Rads to the spine, T1/T2, she should be off Xeloda, which she only started again at the end of last week. So no tx this week for the Ixempra/Herceptin that she has been taking. So it will be 2 weeks of no treatment. Spooky. She wants to try something experimental? Hmm. Heard down from the grapevine.
Honestly, all conversation is via email, unless we go in for the appointment. Welcome to 2017 medical world. But i did see something on a note that was sent to her PCP, it said about what transpired 10 days ago, hmm, it says: HGB 7.5- wants to wait for lab to get a transfusion. That is not the truth. I was not aware of this low #. She offered to go to get a transfusion,based on numbers from previous day, but they said there was not chair till Monday, this was on Thursday. By Friday she was at the ER, having almost fainted, short of breath, but the Neulasta taken a day earlier carried the day. So hmm, i could make a big stink about it, but there is so much going on, that i'll shut up, (very hard), and just try to be even more careful. I am a lay person. Labs are not visible till days later. Only by luck I got those . So, it makes things hard. Crazy, huh. This is the big city in NY, and a big Center. Yep. Yep.
Kaption take good care. D's hands are a mess.
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momallthetime, My wife is doing okay I guess, though scared. She has severe pain in her left arm. The Dr. says it's probably from the cancer pinching a nerve. My wife was on Neupogen not Neulasta (I got that wrong). One evening right after she got the shot she started screaming in pain. Went to ER ASAP and her blood pressure and pulse were off the scale. They gave her (I think) nitroglycerin pills.
Dr. says Xeloda is her next line of treatment as it works against estrogen pos and triple negative. My wife's file is the most complex cancer file any of the oncologists have seen. Also, because it's so complex she's not eligible for trials.
Mike W.
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Mike without really knowing the details, i would think if it's pain from the tumor it's bad enough, but if the doctor says it's pinching(based on what?) it's another. This i would think should be investigated with an MRI, it could be impeding in the spinal cord, and if it is like by my daughter pushing the disk to pinch a nerve, it gave her numbness which could become very serious. Thankfully she is finally getting rads to that location. (problem is, she had Rads to the same place, and they are very against that).
Neupogen causing that level of pain is not so common. I don't know what happened there.Are you going to large Centers?
Neulasta got her numbers to 33 WBC. Now my question still is which treatment is getting her numbers so low
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Mom, I had rads to a iliac bone met and I had to be off Xeloda temporally. My RO said the rads increase the effects of Xeloda. The day I finished my rads I immediately started back on Xeloda and it turns out it was too soon to restart. I got so weak I could barely move. My sister had to drive me to my MO's office and they gave me a bag of fluids. I don't think your MO is trying to ditch the drug, but just dis-continue while doing rads.
Robin
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Hi Everyone, I'm joining the Xeloda club (and also on Faslodex and Afinitor at the same time). I just got my pills today and am going to do one week on, one week off. What schedule do you use? I'm trying to decide if I want to start or end my weekend with it or have the weekend be somewhere in the middle. I just got my indian hemp body cream and gloves and socks in the mail too. Any luck with those keeping the hfs away?
Here's to high hopes for Xeloda for all of us!
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Momallthetime, I'd like to second what Robin said. They took me off Xeloda as soon as they knew I was going to have radiation for my brain mets. Five days after I'd finished the radiation, I was back on Xeloda. The unfortunate thing for me was that I ended up having no treatment of any kind for four weeks! I am grateful for the treatment to my brain because otherwise I would be in very serious trouble. However, there was progression everywhere else during that time off. I'm back on Xeloda, but they doubled the dose from 2000mg to 4000mg in the course of a day. I'm still figuring out what it does to me. Best wishes for D.
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Welcome girlwithacurl. Hope you find good information here.
I'm pretty new to X-doing the 7/7 dosage. I was in a trial but just got dropped because I also apparently have something on the brain. I haven't gotten the details yet. I'm very interested in your comments aboutstopping X while on rads. Guess I'll be asking about that in the next couple of days. I'm pretty scared about the new met- this is my first one outside of just the bone. Again, I haven't been given details. This is a brand new finding and we're still coordinating things. Kinda bummed out!
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So sorry about your new met Kaption. I just found out about my first ones outside of bone too, in my liver. It's so hard to deal with each new blow, but sending lots of healing and hoping thoughts your way.
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girlwithacurl, I took X for three years. I was also on a 7/7 schedule. I found that days 7&8 were consistently my most draggy, achy, tired days, and I planned my schedule around that. So just calculate that whatever day of the week you start on will probably also be your hardest day, the following week. Based on that, my best option was to start on Wednesday or Thursday, because I did not want to be at my most worn out on the weekends when my husband is off, my son is playing baseball games, and the adult kids and grand baby usually pop in to visit. I also preferred not to miss church services every weekend.
Hope that helps you think about how to schedule, and I wish you a good long run on Madame X!
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Robin thanks for explaining about Xeloda, why can't they just say this? Then we would understand it ourselves, because she was taking it on the first Rads session and then they called frantically 2 days later, oh don't be taking Xeloda now, halt! And now I know even to ask if she should wait and not take the next day, although she is off it for 10 days already. They are only giving the Herceptin. So she's off chemo, for 14 days for sure, because first she was too weak, the #s off the chart, and now due to Rads. Agh…
Rgc 4000 that's a mighty dose from what I understand. Are you on the 14 days cycle? I was just thinking maybe to ask Onco to change it 7 on 7 off, because of HFS and due to the BT #s being so low. But someone was telling me they think it's the Ixempra. I would love to hear more on that, if it's the Xeloda or Ixempra. Of course there is much work to be done yet for the mets, it just barely kept it all stable, but only few got smaller, and even fewer disappeared in the body.
Kaption wow so sorry? That's crazy. How are you? Numb, huh? How did they find it? Which scan? Where exactly is the met? That's important. The way they deal with D is, mostly if something bothers her, like pain, or getting very large in the skull, or optic problems, and of course the one in the cerebellum. Otherwise, if it's pushing into the Dura and who knows what else, they kinda let it go. Supposedly they tell us, that they don't want to radiate unless there are symptoms, so they could actually radiate when something is wrong. As a rule they don't radiate the same place often. So it matters where it is. She has more than 30 lesions. It's def doable. There is so much being done in that area now. If you need to you could check out the brain mets thread, there are fantastic ladies there too. They could help.
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Momall,
I'm still waiting for details. I was expecting to hear from RO earlier- but haven't. I see my MO tomorrow, so I'll get updated then. MO felt like the report read as if it's (only one met seen) in the lining. That would be the worst news. RO was going to get the scan itself to determine where exactly it is. (That may be the delay. He's usually very prompt in acting) He said it would be better if it is in the brain and they have a brand new machine that minimizes exposure to healthy cells.
As far as symptoms, it started with my chin, temple and cheek numbness on the right. Nothing showed on the first MRI. Then I had some dizziness and they did the follow-up. That showed swelling and a likely met near the trigeminal nerve.
Theoretically it could be a skull met, but since I got dropped from the Xeloda study, I'm assuming it's lining or brain.
Nervous time. I'm on a short time steroid to reduce the edema and numbness. Dizziness is generally gone.
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Welcome girlwithacurl! Hope you do well on Xeloda.
So sorry to hear about your new mets Kaption. Sending prayers and positive energy your way.
Thanks lulabee for your advice on when to start. I just took my first dose tonight on a 7/7 schedule. Here's hoping for a long run with manageable SE's.
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somehow, I must have hit the remove from favorites button accidentally. I'm weeks behind now, darn.
I will update you all later. So sorry so many of you have been hit with horrific blows.
Suffice to say 4 now, MO still wants me on Xeloda even tho I have progression as shown on pet scan.
Back has been hurting more, and some joint pain. Didn't know X caused joint pain, now I know why shoulder acting up.
Cancer suX!
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