All about Xeloda
Comments
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Amarantha: I don't think it's a given that fluid = tumor. In my case it was but fluid can accumulate for many reasons. In fact, the fluid that was in my lungs was tested and contained no malignant cells, the tumor was an irritant to the lung so it produced fluid. I had (and have) the abdominal ascites but there is no tumor there, it's just from the overall cancer activity, as I have, along with the lung, liver mets, and many bone mets. If you had a recent PET scan, it surely would have shown something in the lung and would have been in the radiologist's report. Mine shows up right away on a PET, as well as CT and MRI, and even the lowly x-ray! On another note, my MO gave me a prescription for furosemide, Lasix by any other name, a diuretic. I have been taking them off and on and they do help somewhat with the bloating. It won't get rid of it but it will also help with ankle swelling, which I tend to start developing after I've had the ascites for a period of time. Just another thing to ask about! I'll be thinking about you and saying a few prayers for you and all of us!
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Hi Wallaby ! YES ! I have the Furosémide ! 40 mg and have been taking it. It certainly makes my ankles smaller, but so far no cigar for the Hindenburg !
Thank you for your wonderful and full explanation of the fluid accumulation. That certainly makes sense. I am sorry you have to deal with so many different mets. (Liver, too ! argh)
I haven't seen the radiologist's report yet, just the images, and my oncologist's take on it. There is no visible tumour in the lungs, but pleural effusion can be seen in both of them. But of course with IBC, solid tumours are not the thing, it is a stealthy, almost invisible infiltration by tiny particles that block the passage of lymph.
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I guess I was thinking X might take longer to work, like IL but it seems as if they can tell very quickly if it's working or not. I too have fluid in my lungs on my March PET. That's the first time I've had that in my two years. She says not enough to drain. I have mets all in my right lung, pleural effusion, too. But I'm not having too much trouble breathing and no coughing. Plus a few lymph nodes near my esophagus. Then there's my liver monsters Yuck. I do feel pain from those in my right shoulder blade area. I know I don't have ascites seems like my stomach has been so upset by the X that it and abdominal area are swollen. I had a waist before I started X.
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Where can I buy Lansinoh ? I looked at Kroger, not there.
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Grannax, if you had a waist before you started X, and now it is gone, that is a pretty strong argument in favour of X being the culprit ! What is going on with X ? arrrrgh.
I too was thinking X might take longer to work as well, so they all told me ! but look, I started on April 1 and we're already giving up, but that is because progression is worse than no progress at all. Also my oncologist is maybe getting worried (finally ?). My oncologist was thinking the drugs might have caused the pleural effusion. In any case certainly did not make it go away. Oh well, chins up goyles. Trying anyway ...
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I did a little googling, bloating IS listed as one of the side effects of Xeloda on some websites, but it is NOT listed on my warning sheet !
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Hi all....wanted to share this uplifting although bizzarre story. Enjoy.
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Amarantha: Glad you have the furosemide! At least it will help the ankles! I don't know much about IBC. It sounds like it may be harder to defeat than the other types? I had a difficult night last night from the ascites and, I think, pain in my liver area. I feel somewhat better today and I did take the Furosemide and it does seem to help my overall bloating, but, of course, does not get rid of it. Finally got the scan issues sorted out and now have bone tomorrow, echocardiogram on the 7th., and CT on the 10th. I seem to be getting further away from a treatment start date rather than closer! Keeping you in my prayers!
Cindy
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Grannax: I bought mine first at a local drug store, they all carry it in the aisle where they have baby nursing supplies. My last tube I bought on Amazon.
Cindy
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A question for you all: I've been on X (7 on/7 off) since mid-January with some mild swelling in primarily my right ankle/foot. I had the same on Ibrance. Over the past week or so (end of "off" week and beginning of "on"), my ankles and feet have ballooned up with swelling, getting worse as the day progresses. Is that an expected side effect? No swelling/bloating so far, elsewhere. Seems a small concern relative to the ascite issues some of you are battling, but I'd love to know if this is a typical SE for many or not. Thanks-
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Joyner. I don't know the answer but I do think you should go to your PCP. Ankle swelling like that can be a symptom of blood clot and other heart or circulation issues. My hand feels swollen since I started X.
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JoynerL...There was definitely some swelling in my lower legs andaround my ankles while I was on X.
MY mo would inspect my legs and press on the swelling to check on the actual amount, so I believe it's important you report it and see what they recommend.
Maybe a reduction might be in order....
Good news, regardless of increased pain levels, my MRI indicated no new lesions, no spine compression and no danger to the spinal cord...thus, if tomorrow the liver biopsy reveals that lesion was alsoa false alarm....I will be singing for joy...and will insist on returning to X, instead of moving on to Doxil
So you know...one week off X and WBC go back to normal....
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Oh, HOORAY Miao!! Keep us posted on the biopsy tomorrow, please!
Thanks to you and Grannax for your ankle swelling replies. I have actually been to see my onc (yesterday) and they did a Doppler to ensure no blood clots. I'm to have an echo cardiogram, too, but I don't expect any heart-related issues. I bought some dreadful compression "socks" this AM...will see what they do.
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Anybody know how long the xeloda stays in the body
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Gracie it's active for just two hours...I’ve been off for a week and my WBC levels are back to normal
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Thanks Miao! Wow, I had no idea, I figured at least a few days
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Hello everyone,
It looks like I'll be joining this group very soon. I recently progressed on Ibrance. Until now I only had mets to a couple of mediastinal nodes each time but over the last two months my cancer decided to go super aggressive and I ended up with multiple bone mets and a single liver met. My MO is actually trying to push me towards a more aggressive chemo regimen and at least to me does not sound very convinced that Xeloda will be very effective on its own. When I went for a second opinion I actually met with an even worse prognosis where the MO straight out told me I have 13 - 24 months left. This is a drastic difference from even 3-4 months back where they were very positive and felt that I might be around for the next big treatment and maybe come out of this mess. My mets are scattered but still very small and my CA-27/29 markers are at 58. I am only 33 and while I was worried and realistic about my lifespan hearing it directly from someone that its a matter of months was terrifying. I suppose I am more afraid than I thought.
I was just hoping to hear some positive stories where Xeloda helped/worked for a decent amount of time for people with multiple bone mets (I have about 4-5 small ones) and liver mets. Off late I believe more in what I read on here than in what my doctors or anyone tells me because we are the ones going through these treatments and dealing with this beast and there's really no one else who understands better.
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Ann, I don't believe that prognosis at all! Did you say just one liver met? I think it was crazy for him to say that. I was on X one year and some others here have been on it even longer. I've had Mets for 7 years. Lots of bones and maybe liver but that is inconclusive for now.
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Ann...I'm so sorry you're experiencing this setback. Please don't believe anyone that pretends to know your future. There are ladies on this topic that have been NED on xeloda for many years. I'm sure you'll hear their success stories soon, like HBL'
Our doctors should show some humility, considering how much, and for how long, they have failed us.
Stay positive, stress is our biggest enemy....sending you a warm and strengthening hug.
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Ann, I've only been on X since January, so I can't provide long-term stats, but for me, it's working so far. I, too, had Ibrance stop working and moved to X. I have bone and bone marrow only mets so far, but they're everywhere and far too many to count! As Pat McG on the Ibrance string would say, no one knows your shelf life, and you may well be with us for many years! All that said, I'm quite sure that this has thrown you for a loop and that you're frightened to be told such things.
Did you go to an NCI facility for your second opinion? If not, perhaps another opinion is in order? Do you have someone with you for support?
Sending hugs-
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Ann -- Please don't accept anyone putting a number on your time left! From your signature, it looks like you still have many treatments that haven't been tried. Have you asked about any of the liver or bone specific treatments? I've been on Xeloda for 7 months and had a little progression after 2 months of being sick & not being able to take the chemo how I should. We are trying SBRT for the 2 areas that I have and upping the Xeloda dose slightly. There are some other bone or liver specific treatments that are available as well. I was metastatic de novo in 2012, and my liver was covered in those pesky tumors. I got to NED for a while and the last 3 years it ebbed & flowed a bit, but I've been dealing with liver mets for 7 years. I'm sorry that your encountered docs that didn't show compassion, etc.
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Thanks HLB, Miaomix, Joyner and nbnotes, I feel very encouraged by your responses. I really hope Xeloda can cause some regression. Nb, I am also going to have some SBRT to a few of the bone mets and I will then start Xeloda. We're waiting on my blood counts to get better. I'm still neutropenic from the Ibrance and am waiting for numbers to recover.
I have great support from my family and I consider myself very lucky to have that right now. I also work full time as an engineer but this last month has been really difficult. The last 3 years of being stage 4 were relatively easy (or as easy as it could be). I was being followed very closely with my TM being monitored every month. I know markers dont always work, but for me they've been spot on. I almost feel like the bone mets just happened in the last one month. Over 3 weeks I started to feel discomfort in my hip, femur and rib and its startling how quickly it happened one after the other. I think my MO was really surprised too. When TMs started to rise (and not by too much - they're at 58 now. Still pretty bad considering they were below normal in February) and I dont think he expected such a sudden explosion of mets (though small, they are just scattered) and his initial reaction just scared me. My cancer has always been really slow and pretty cold to respond to chemo. In some ways maybe since its aggressive this will actually make it respond to chemo..
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because of my SE’s my onc. Dropped my dose to 3000mg daily. Hopefully the mouth sores will calm down! Yesterday the balls of my feet were red and hot, but no pain yet!
I haven’t been taking my multi vitamin because it has folic acid in it. Does anyone have any vitaminvsuggestions? I have to have gluten free too because I’m celiac
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Gracie-my specialty pharmacist told me that the small amount of folic acid in multi-vitamins is okay. I just can't take any extra folic acid supplements.
I take Centrum Silver.
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Thanjs Denny! Mine says 100% daily dosage so it’s worrisome! Always great to hear what the pharmacy says
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Hi!
I've been on Xeloda for 4-1/2 years now. I have multiple bone mets throughout my spine and chest. Xeloda has kept me stable and I've had minimal side effects. I hope the same will be true for you.
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Linda, as a newbie to X, I appreciate hearing good news like yours. I got 4 years out of Ibrance before I had my first progression.
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Hi to all you ladies. I have just finished second round of Xeloda 2 weeks on 1 week off 200 X twice daily. I have had minimal side effects, a bit of fatigue but nothing major. I have found that I get stomach cramps and a bit of sickness a couple of days into my week off. Has anyone else experienced this.
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Hi Yvette, yes I've had stomach cramps in my week off and diarrhea that seems to get worse every cycle. Sorry I haven't found much that helps yet.
Ally
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Yvette-I didn't get stomach cramps. But like most of us, you might feel worse on your week off. The chemo accumulates and then the effects hit us.
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