All about Xeloda
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Pamela...yes. My hair has always been thin all of my life. I did pull it back into a little pony tail (I keep my hair chin-length), and attached a cheap fake hair bun thing to it. I then put a lacy ballet snood over the bun.
I got a lot of compliments on it.
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I'm on my second round and had been feeling the slight tingling/burning of palms and heals for a couple nights but last night I took off my cushioned socks and my feet were swollen & it looked like I had Fred Flintstone feet. The bottoms of them were bright red. I iced them for over an hour and creamed up before bed and they felt better. I also skipped my dose last night and only took 2 out of 3 pills this morning. Is it just a balance game like that? You cut down on dosage until symptoms go away and go back up? I emailed my MO to let her know and I have an appointment tomorrow for blood draw. This is my second round (I'm only 7days/7days) but she's increased me to 3000/d this time. I REALLY want to be able to tolerate this. I reread the advise on shoes/slippers. Anyone have gel inserts, if so do you like them or am I better off just getting something like sketchers?
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Pamela23, please please get ahold of your MO. I cannot give you medical advise, but only suggest that you contact them asap in case they want to hold your Xeloda until seen.
My MO said to me it was better to lower dose, than to keep going off to heal HF that has become severe.
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Pamela, I echo SandiBeach--call your MO. Let him/her reduce or hold the dosage if you cannot control it. I had a couple of days of increased H/F and managed to reduce it with lotion, but she still told me to call her if it returns in a bad way. Don't let it get away from you.
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So I have an appointment for a follow up with my MO on Wednesday and I am trying to get my head around what I should ask. I've only done one round of Xeloda (14 on/7 off) and while I have been in the off cycle since Thursday - I worry and wonder if things have changed or getting worse or if this is going to work. I know one round is probably not enough to tell but I so desperately want this to be the right treatment. I have been doing a ton of research since I last saw him - I have changed my diet dramatically - but keep thinking in my head that it doesn't matter. I know attitude is a huge part of this as well but I can't seem to get in the frame of mind that I am going to find a treatment that works for me. I just get overwhelmed and scared so easy and at times feel like just giving up. How do I manage to live life between the appointments and pills instead of having it consume my every waking moment? What things should I ask while I am there on Wednesday that any of you wish you had known to ask at the beginning of Xeloda?
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Pamela-also echoing....call your onc and let him/her see your feet. The redness is normal. I have had red feet and palms for over 2 12/ years.
Deanders-in my almost 19 years of survivorship, I have found that the diet doesn't really make a difference, as long as you eat everything in moderation. I don't touch alcohol or pure soy. And no way will I experiment with alternative supplements.
But a sensible diet is fine. Your body needs nutrition.
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Deanders, I’ve just started Xeloda too, last week, so I can’t offer any advice on that but you are so new to cancer and especially stage IV, please know that the intense fear will fade. It’ll take a little time but many of us soon find a point where we are doing what we can, we feel ok and we manage to find joy in things. I’m confident you’ll get there. I will say that since your triple negative (TN), you might ask your MO if immunotherapy is an option in the future, if needed. I read somewhere that it was promising for TN.
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Deanders, I agree with Denny. I eat everything in moderation but no alcohol (I never did drink.) The only vitamins I take are D3 and calcium/magnesium--no other supplements. I would let your MO know you get overwhelmed and scared easily. Perhaps there is a group or treatment you can do to help with that. Give the Xeloda a couple more cycles before worrying about it not working. I am NEAD after 3 cycles and my MO was surprised it worked so well so fast, but I do have a lot of faith and many people praying for me. Attitude and faith do help, but I also take one day at a time. What is my goal for today? I try not to worry about tomorrow as I may have a good day or bad day.
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Deanders, starting a project of some sort may help get your mind off of cancer. Building a waterfall has helped my anxiety and now I need to live at least another 5 yrs to see how it all turns out lol
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Deanders...I don't know if you read this about me, but in 2004 my liver was so filled with mets, that I statistically only had a year to live.
So I was a total basket case for the first 2 months of Gemzar & Herceptin...then I had a scan and my baseball sized tumor had shrunk somewhat. So then I could relax a tiny bit. 9 months later my liver was clear.
And that was over 16 years ago! It is hard not to worry, but I have learned that they are so many new treatments that will work for us.
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My MO said to cut down to 2 pills am/pm until I see her tomorrow afternoon. Feels much better today.
Deanders--I am where you are in taking the pills but my motto is "one day at a time". Today I'm doing all I can do--taking the Xeloda, resting when my body tells me to, drinking lots of water, eating well and saying positive affirmations. Your chemistry of your body really changes when stressed and we don't need that. So cry or talk to a friend when you have to release some stress & anxiety then remember you have people who care about you praying & you are doing everything in your power than you possibly can. I felt like you are last week. I even took my anti nausea med a couple days to get the knot out of my stomach so I would have an appetite. Then I remembered that it takes just as much energy to worry as it does to believe. So believe this is working and cross the next bridge when it comes along.
Denny--how many rounds of IV did you have? How many months total on it?
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Pamela-I have had IV chemo for 18 1/2 years....every 3 weeks of one chemo or another. I have been on Xeloda for over 2 1/2 years, with Herceptin IV every 3 weeks.....so about 330 times????
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deanders, I was told nearly 7 years ago that I may not survive another year, 'go home and get your affairs [ paperwork in British english] in order'. I have decided I am going to live the best way I can for at least another 7 years.
I repeat the other comments- live today, plan something which will give you a sense of purpose and glory in your achievement when you succeed. It doesn't have to be a big thing,on the bad days it may be put the washing machine on, then collapse with fatigue and have a drink and a cookie [or another treat] and pat yourself on the back ,you did it.
Definitely tell your MO about how you feel. Perhaps ask when you will have a scan to find out what is going on, then try and put those negative thoughts away until the scan. Good luck with your appointment.
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Denny123--wow, you ARE a warrior!! But if that means being alive almost 20 years later, I'd do the same thing. Any permanent damage to your healthy tissues?
Denny10--They told me they think my mets have been there for a few years, before I even got my lumpectomy in 2016. My liver is infiltrated with mets and very enlarged. Your story inspires me. I know the site is having a glitch with adding to our Dx footnotes. Can you tell me the regimens you've been on so far?
Also I wanted to share my MO appointment from yesterday. We'd gotten a 2nd opinion last week and I brought up some things to my dr. The first thing I asked was why I'm on 1 week on/1 week off instead of the standard 14 days on. She printed out a retrospective analysis study that was published in Feb 2020 in "Metastatic Breast Cancer" that saw no differences between patients randomized to either dosing schedule as far as treatment failure or overall survival. She said my regimen also cuts down on necessary dose reduction due to side effects like H/F & diarrhea.
Also, we've been declined for a PET scan and wanted to appeal and both my MO and the 2nd option oncologist suggested a bone scan since my MRI of the brain (separate issue) last Nov was clear and all the lung scans from the summer were clear. This makes us feel like we can get the full picture sooner. I'm so happy to move forward on this.
So after 2 rounds, my liver enzymes have gone down a bit but the CA marker is still very high which she said is normal a the beginning of a chemo regimen. I do see that my RBC & WBC are a bit down which stinks.
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Wow Pamela! That is a lot to go through! I had a friend whose tumor markers went up to 2,000, but a few years later, they were down to 30.
So all is possible.
7/7 with Xeloda is much more tolerable.
Thanks for the kind words. As far as I know, none of my other tissues have been harmed . My bloodwork has been good. I am sure that I do glow in the dark, though.
You have a good attitude and I think that you will do very well.
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Hi Pamela, after diagnosis in 2007, mastectomy to left breast, I had 6 rounds of IV chemo, followed by 5 years of Tamoxifen.
2013 I had progression to right lung and right armpit, 3 years on letrozole, then faslodex alone, followed by faslodex and Ibrance in 2017, now madame x. I am midway through the 3rd cycle. I am hoping for 7 years, but 2 or 3 would be good, by then new treatments will have emerged . I am taking 3200 mg a day, 2 weeks on 1 off. I think I would prefer 1 and 1, but apart from fatigue and constipation [ Denny 123 ,thanks for the warning] I am coping ok at the moment.
I don't ask about details of blood results, the oncology team tell me if they are concerned about rbc or wbc. I find ignorance quite comfortable, I just get paranoid prior to scans, which I now have every 3 months.
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I had scans yesterday, a ct and bone scan. Just got off the phone will my oncologist and she says the scans do not show progression but it also doesn't show any regression. She read me parts of the reports and says she's happy with how things are now and to continue with the xeloda. She read something about possible slight increase in skull met but the report also says 'or could be technical' which she said means things aren't always exacting from one scan to another. This is the part where I feel uneasy. I'm going to have to go back and read my last scan because I don't recall any skull mets mentioned there. I asked if this meant brain mets and she said no. Also no organ involvement. The written reports will show up on my online chart in a few days, so I will be back here asking more questions when read them.
I have been on xeloda for six months. On the one hand, I'm being told no progression which is good because the past year when I was on Ibrance with Aromasin and then Verzenio, I had quite a lot of bone progression. So to not have additional and also no organ involvement at this time and be in a holding pattern is better'n nothin'. I guess I was thinking maybe the cancer would start disappearing.
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Divine,
I am not on Xeloda but recently my radiation oncologist ordered a skeleton MRI to see if that could distinguish what was degenerative disease and what was mets (I was seeking information from her about whether there was anything in my skeleton that could be zapped with radiation.) I had had a previous bone scan shortly before. Lo and behold, when the results came back from the skeleton MRI, the report said something about possible mets at C1 (which is the base of the skull). This concerned my radiation oncologist, and so she ordered something called an MRI skull protocol. I didn't even know such a thing existed! Anyway, that one said the space that had been mentioned on the prior scan (and which, coincidentally, had been flagged as well on the bone scan) was clear and there was nothing there.
If you want to pursue this further, you may want to ask your MO about the MRI skull protocol.
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Divine, I have been on Xeloda 7 months. The first 3 month abdominal MRI showed some reduction in liver mets. The 2nd one (that was last week) showed no progression, but no regression..stable. The bone scan showed suspicious area on right side of skull. The head CT showed it was inflammation in middle ear, no skull mets.
Ugh..so many scans..but stable. Just want the liver mets shrunk. So understand.
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Devine- Do you get TMs? are they useful? It is worth getting more clarity if there is another testing modal that can clarify. Worry is soul sucking. I think stable is success! I'm not sure the PFS from stable is any different from PFS from NEAD- but, maybe someone else knows this.
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NKB..good point about TMs. My Ca15.3 continues to decline. The comment in my liver MRI report said peripheral enhancement seen around lesions..so take that to mean they are not dead...yet.
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SandiBeach- my TMs have plummeted much more than with previous successful treatments. I have not gotten a PET yet since on Xeloda- my MO thinks that the risk outweighs the benefit since my TMs have been so predictive. I would love to see a lovely PET, but, I think she is right about waiting for safety and let those who really need them get them more safely.
Happy to hear that your TMs are telling a good story. ultimately they are seeing dots and spots- dead dots or live spots? hard to know.
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Thanks for all the input, everyone. I haven't gotten tm's since the first year of diagnosis but when I went for my onc appt this month, she gave me a script to start getting them again with my monthly blood work.
This summer, the cancer center I go to morphed into a new $78 million dollar facility and it's lost much of the personalized attention I've been used to for almost 10 years. Yes, the new wing of the hospital is beautiful, but it is bigger, busier and more vacuous. Two separate departments merged into one so there's a lot of new personel I don't know whereas before I knew them all by name.
The routine has changed and I have to keep on my toes to avoid some things falling through the cracks. Before, the same two people did all the scheduling and everything was taken care of before I left after my appt. But this time, I was told someone would call me to schedule the scans. When they didn't, I had to call them and it was a big run around and I ended up losing my temper.
I also used to have a number for my onc's nurse, J, the same nurse all these years, who returned my calls every single time. Now I call a number and an "available nurse" answers the call. So I called about getting my scan results and a nurse who doesn't know me, and who I don't know, said she'd send an email to my onc that I was waiting to hear. Two hours later, after not hearing anything, I called back and asked to leave a message with nurse J to call me. Shortly thereafter, the onc called. I know it was because J gave her the nudge.
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Devine- What a change! Hopefully they will figure out a better system. I do hope that your TMs are useful in watching your response to Meds. seems like everyone has cancer. Every time I go for my Zometa I see they have hired a few more MOs. The newish infusion center is stuffed full and my MO is so busy- even with lots of video visits.
Got my senior Flu shot today- outside drivethrough.
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I had my every-3-months' PET/CT scan this week. All bone mets stable and quiet and only one thing of concern: Small FDG avid focus in the left periclavicular area is new with SUV of 2.8. MO suggested, and I have agreed, that we'll do stereotactic radiation on this node (which measures 8mm). She had already talked to the radiologist who radiated my hips two years ago for stability. Apparently this periclavicular node is barely above normal but larger than seen in the past. Has anyone had experience with this sort of radiation (SBRT?) to this lymph node? Thanks!
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Hello all! I wanted to post a little positive news today. I had an appt on Wednesday with my oncologist and they did bloodwork that checked TM's. This is only the second time I've had them done - once at the beginning and now three weeks later. It took a little while for the results to come back so they weren't ready while I was there on Wed. I had another appt with my naturopathic oncologist on Friday and the TM's were done - and they are really promising - down by at least half after just one treatment of the Xeloda! Super stoked to get some uplifting news - it feels like the last year has been a bunch of failure so this was a great feeling! Fingers crossed to continued good results with this treatment plan. Only thing that sucked was the Zometa really made me feel crumby Thursday and Friday. Think I'm feeling a bit better today still have to get moving a little more to tell.
Here's to a little piece of good news!
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deanders, so pleased you have something positive to celebrate, congratulations
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Deanders...YAY for you!
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Thank you guys! I hope I'm not excited prematurely but from what I understand TM's are a great barometer for looking at whether a treatment is being beneficial or not. I'm clinging to this with everything I have!
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Denny123-I read your text you wrote on Sept. 21,2020 about when your liver was full of tumors. I recently was told, after a year of good scans, that two tumors 2.3 & 2.4 along with 6 to small to measure appear on my Scan. When your radiologist is looking at the screen and telling you he is surprised - I was overwhelmed!!! I also was a mess. I am glad you wrote how you felt - I did not feel so isolated and alone in my feelings.
I will be changing to another medication since Ibrance quit working after a year.
What treatment plan were you on that healed your liver? Is your liver still healed?Are you on daily hormone surpressor?
Thanks Annamaria
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