Xeloda Group - Jan/Feb 2018 (Early Stage)
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PaulaAtlanta, I came across a post in TNBC forum by Meggy about her ten year survival of TNBC. She attributes survival to a full course neoadjuvant chemo, more heavy-duty adjuvant chemo and a strict low fat diet. She compared her low fat diet for TNBC as hormonal therapy for ER+ BC. Very inspiring.
Buttonsmachine, my fingers tips look shiny and puffy but no swelling. they actually feel worse on the off week. When I wash my hands I can feel my nails scratching my skin and hurt. Sharp claws I have! I just keep up with urea hand cream. Socks on 24/7. A humidifier is turned on in the living area from when I get up to when I go to bed. It helped a lot with skin peeling on hands and feet. Are you on hormonal therapy as well? Could the combination of two drugs make you feel worse? I will start AI within two weeks of finishing round 8. I will have a baseline dexa scan this Wednesday per my MO's request.
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Hi Beauz, I also feel that I have sharp claws! I've been off Xeloda for a full week, but my hands are still red and sore, so my MO is having me take a few more days off. They wrote a Rx for a topical steroid cream to use along with the urea cream and aquaphor, so hopefully that will do the trick. I'm not on an AI yet, although I did start Zoladex to shut down my ovaries. I still have some leftover neuropathy from Taxotere, and I wonder if that might have something to do with it. It's odd because I haven't felt terrible otherwise, but my hands reacted quite a bit. My MO said it's more of a reaction than they want, and they might lower my Xeloda dose to 2500mg/day. I'm always a lightweight when it comes to chemo for some reason. ;-)
Best of luck on your DEXA scan and starting your AI!
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Good Morning, friends,
I'm on Day 13 of my first "set" of three week Xeloda (2 on, 1 off). My MO cut my original 4000/day to 3000/day after I showed pretty extreme early side effects, especially HF syndrome. I thought we had kitty litter all over the house! Felt like I was stepping on sharp little rocks, and my heels and palms turned deep red. Now I wear soft shoes always. [My husband is amazing with cleaning up after the kitties, BTW.]
My MO also sent me for an MRI Monday on my lower back due to the sudden excruciating back pain. Guess what? If you wear tissue expanders, you can't get an MRI, so I got a CT to be sure no metastasis. None, and I saw an orthopedic MD last week who gave me a cortisone shot and prescribed PT. I am glad to be starting PT this coming Monday. I want to help myself and get off these 1/2 doses of smallest Percocet that I take divided during the day.
I'm taking a strong probiotic twice a day near my taking of Xeloda time. Even the weakest opioids usually constipate me immediately, but I've been overly regular with Percocet this week, so I want to guard agains diarrhea. Also taking digestive enzymes twice daily. When nausea breaks through, I take a left-over-from-IV-chemo pill, Prochlorperazine (Compazine). And bananas - thanks to y'all I'm eating bananas with Xeloda. I drink a gallon of water a day.
So I'm determined, with TNBC, to make this 24-week journey which will take me 2 months beyond my diagnosis and initial IV chemo.
Beauz - I'm also working on the diet, but I think Madame X may interfere a bit. I appreciate what you posted about 10 year survival for those of us with TNBC. My MO may want to take me back up to 3500 when I see her Monday. She's terrific, so I'll explain about current side effects and let her tell me if the 500 additional is really significant for me. This being my first set, I'm anxious about going up. I got the strongest five months of adjuvant IV chemo, 2 chemos each of 2 1/2 months, but still had 2 of 14 nodes and a 2 cm resistant tumor at DMX. So I've got to do the best I can now for the me of the future.
Happy weekend to all,
Paula
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Hello everyone.
I started my 8th round of Xeloda today at 3000mg per day. Apart from my usual sharp claws and sensitive finger tips, I had bad taste in my mouth and mild nausea from the second week of round 7, just felt better two days ago. Another weird thing I noticed during round 7 is many short brown wiggly lines on my shoulders. I don't feel much from those lines except that they are gross to look at. They look like many tiny cuts. I took a photo of them, showed it to my MO and he didn't think much of them. I think those lines may be from Xeloda because I have been on my regular food and I am not taking any other pills or supplements. My bone density scan showed that I have osteopenia. Crap! My MO will have more discussions about hormonal therapy and osteopenia on my next appointment.
Buttonsmachine and Paula, I hope you are doing well.
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Hey Beauz, congrats on being on round eight!
That's interesting about the brown lines - did your doctor have anything else to say about that? Have they resolved? I don't know if this is what you're experiencing, but Xeloda can cause hyperpigmentation, especially with sun exposure.
Xeloda does affect our skin a lot. On the upside though, the doctor told me the Xeloda would help kill some of the small pre-skin cancers I have. I got way too much sun as a child - silver linings where we can find them I guess.
I'm nearly done with round two, and my MO lowered my dose from 3000mg/day to 2500mg/day. I'm not having many hand/foot side effects - or really many side effects at all. I suppose I should enjoy that while it lasts, but now I wonder if my dose is too low!
Anyway, I hope you're feeling better.
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Hello ladies, just checking jn on everyone. Sounds like we are all hangung jn with the Xeloda. I’ve lost track of what round I’m on as I’ve been on business travel for most of the summer. Dragging my family with me around the country.
One thing I continue to suffer from are extremely dark and dry hands and feet so I have had little time in sandals this summer. But I ain’t complaining as my energy level is still good and I managed to lose 10lbs by not eating after 7pm.
Enjoy the remainder of the dog days of summer
Peace and blessings
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Hi Everyone. Great to hear you are all doing well. I finished Round 8 two weeks ago. Woohoo! The HFS was actually worse the week After I finished, and I am still dealing with that and some neuropathy issues. I can tell I am getting stronger. Anxiety and depression popping up more now which seems weird since the course of treatment is behind me. All is manageable and I remain grateful for each day. 💕0
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Hi buttonsmachine, I sent you a PM of picture of those brown lines on my shoulders. I showed the picture to my MO but he didn't seem to be alarmed. I always wear outfits that cover my shoulders even in summer. My weight has been stable. I am doing alright so far, hasn't got yucky taste and nausea yet. But I forgot to mention that I have had annoying dripping nose for a while for no obvious reason other than Xeloda. Remind me of hairless days from chemo.
Glad you are doing well this round. Xeloda tablet had two sizes, 500mg and 150mg. Hope you MO can adjust the dose you are comfortable with.
Opt4Life, glad you checked in. My face is looking very tanned, and I have purple and brown spots on my hands and feet.
Chelsea, well done on finishing Xeloda. Do you think your depression and anxiety may have something to do with Femara?
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Thank you Beauz. I am feeling stronger and HFS is better. Re the depression and anxiety I don't think it is specifically due to the Xeloda. I did look at the side effects for Letrozole and the shot I get each month to ensure I am in menopause, and both of those meds show anxiety, depression and mood swings as a side effect. I'm also sort of wired this way. So who knows. My MO said it is very common when going through a journey like we are on. He recommended the RX to avoid “unnecessary suffering". Also, a friend who went through BC several years ago experienced something similar after all the treatments were done and life was getting back to “normal".
Hang in there everyone. We can do this. 💕0 -
Chelsea, thank you for your reply. As you know I am about to start letrozole, I am keen to know everyone's experience with the drug. I hope you can check in here regularly.
Buttonsmachine, the little lines on my shoulders do remind me of stretch lines. But I thought the stretch lines are lighter in colour and dont normally appear on shoulders.
Well, Monday September 3 marked my last day of last round (8) of Xeloda tablets. I thought I was doing alright this round, my taste and nausea hadn't been as bad as round 7, hands and foot syndrome was as usual…until day 11. Then I started experiencing some heart issues. I could feel my heart pounding , first only in the evenings and then all day on day 14 . It was still there when I got up Tuesday morning. I had a similar but worse symptoms during AC treatments, which landed me in ER. I decided to ring my liaison nurse about it. She said anyone who experience heart issues while on Xeloda should go to ER or family doctor to check it out. So I went to ER right away. They did ECG on me with normal results. My blood counts were all good except low level (3.2)of potassium. I was given potassium through IV. The ER doctor who put cannula in my arm commented that my vein was crooked. Not surprised at all as I had IV for chemo infusions. It took about 6 hours to finish three small bags of potassium infusion. They had to slow down the rate because my vein kept hurting a lot which was a known fact for potassium infusion. I am feeling a little bit better.
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Beauz, glad you are feeling better. I am now taking Venlafaxine ER for depression and anxiety and I admittedly do feel better. Still have HFS. Last dose of Xeloda was 8/9. And I’m still tired and weak in the afternoons. Cannot tell if this is related to the Letrozole or not. Stay tuned!
We can do this 💕0 -
Beauz, I'm sorry that happened to you on round eight - heart symptoms are scary. Will you get a short break before starting Letrozole? Either way, please keep us posted on how you're doing.
Beauz and Chelsea5, congrats to you both on finishing Xeloda! That's wonderful! I hope you both start to feel better soon, and that all your Xeloda symptoms resolve quickly.
I'm starting on round three of Xeloda today. It seems like I still have such a long way to go, but I try to focus on what's right in front of me. My MO is keeping me at 2500mg per day, and she seems to think that is the right dose for me. My dose is lower than others here, but I do trust my MO's judgement, so I'm going with it for now. I'm still having HFS, but it hasn't been too terrible otherwise.
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Hope all are doing well this weekend.
Just a quick update: After 14 days, (7 of 4000 mg., 7 of 3000 mg), I went down to 11 days/7 days for my second set of Xeloda. With my oncologist's permission/appreciation considering all the tough side effects this 64-year-old body has endured since diagnosis last October, I'll be doing 7 on/7 off of 3000 mg until I get into the trial for Keytruda (medical arm or other arm). This has been rough, but I'm feeling confident in my decision to reduce days on Xeloda. I haven't been able to exercise beyond walking 1/2 mile due to nausea, pain, constipation, back pain, joint pain, etc. Like all of us, I want to decrease the risk of metastases, but I also want a body I can live in for decades to come. Being TNBC made it tougher for me to make this decision, but I'm aware of the statistics and comfortable with my decision.
With good wishes for everyone, Paula
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It's nice to hear from you all, Chelsea, buttonsmachine and Paula. I am feeling better. But my fingers are hurting more because my finger prints have gone. They were still sort of there when I was in ER. Oh my shiny and puffy finger tips! My MO wants me to start letrozole within two weeks of finishing Xeloda pills. My next appointment with MO is on 9/17.
Paula, glad you are soldiering on!
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So, I'm going to be asking my MO, of course, but here's a question:
If it takes the lowest dose of Percocet twice daily to get me beyond 7 days on before my 7 days off, is it worth it? My primary SE is bone pain, lower back pain, joint pain. Nausea I can handle, fatigue I can handle (lucky to be working all of 10 hours/week, basically retired). I had a wonderful first 5 days this Set 3. Now that Day 6 is here in full pain, I see what it's going to be like. But those first 5 days were BETTER than the week off!
Beauz - Thank you; I will get through this.
Buttonsma - We are very close to the same place. I'm rooting for you!!!
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Paula, sorry to hear that you are in so much pain. I guess that I have been lucky that I haven't experienced much bone pain during my treatments. How are your blood counts? My counts have been okay except for low level potassium. Make sure you drink plenty of water. My SEs were definitely worse on the off-week.
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Hi Ladies,
Just checking in. Hope all is going well. I am getting stronger every day. Still having some bone and joint pain and surprisingly still HFS, though it is getting better for sure. I am now wondering if some I what I’m experiencing is from the Letrozole and also the chemo-induced neuropathy. Paula, I hope you are doing better with the pain. Beauz, hope all goes well with MO next week.
We can do this 💕0 -
Hi, Beauz,
This is "off week #3" and my back pain is worse than ever. I get to the place where I'm forced to just sit or lie down, and that can lead to too much introspective thinking. Which moves towards depression, but I back away. I wasn't going to the see Orthopedic Surgeon with whom I have an appointment this week as he really didn't help before. But I've met my deductible, so why not? You mentioned that your SEs were worse on the week off. So far, that's proving true for me. In the last two, it was near the end of the week off and the beginning of back on that felt better. Hope you are well in Australia.
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Ouch! Paula, I really feel your painful back. The pain would certainly push my mind to dark places. Can you MO adjust your dose? Thinking of you.
Chelsea, I am glad that you checked in. My nurse navigator told me some women experience achy bones and joints from letrozole. But I was very surprised to hear from the pharmacist, who dispensed my letrozole this afternoon, that achy bones and joints are rarer side effects of the drug. He told me to watch out for signs of stomach pain, hot flashes and headaches, and seek help if I experience these. As for my appointment with MO, I am not very happy with how it went. When I tried to ask him what he could do to protect my bone from letrozole as I have osteopenia, he somehow got very offended. He said to me " you have bad cancer… blah, blah…" . Oh…… thanks for telling me that . I don't have cancer. I have BAD cancer! Lol… . He can't do anything for me other than telling me taking vitamin D and doing weight bearing exercises. I also asked him about entering some trials, like Pallas trial. He said he would look into it…. Have you thought of doing trials?
I will start taking letrozole and vitamin D tomorrow.
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I'm on a “sandwich" regimen of Xeloda. I had 4 rounds (4000 mg 14 on/7 off) starting in February, then 33 rads and started back on X last month. I'm in round 2 (or 6 depending on how you count it). This round is kicking my butt. I thoughtround 4 was bad, but I barely function the second half of this round. I really want to stay on the full dose because I will be stopping after round 6 to enter the Keytruda trial. Just curious if anyone else experienced this.
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Hi Nessvess.
In answer to your question...Yes!
Everyone’s experience is unique, but I Too was wiped out. Hang tough. Soon this part of the journey will be behind you and you will regain your strength 💕0 -
Hi Nessvess, whoo… you are very close to the finishing line of Xeloda! I too just finished an 8-round "sandwich" regimen of Xeloda. I went to ER the day after my very last Xeloda pills because I felt crapy. Xeloda can cause some serious side effects. It's always right to check with your doctors if you can barely function. Best wishes for your up coming Keytruda trial.
Some good news from my nurse navigator . My MO is writing to his colleagues in a major city near our place about a suitable trial for my BAD cancer.
Hope you all going well!
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Beauz...
I love your positive attitude and humor. Thank you!!!
Expecting great results for you regarding trial options.
We can do this 💕0 -
Hi girls,
Just finished my first week on Xeloda I am aon 7 on 7 off. I am nauseous, in pain esp back pain and have had chest pain. I called the onc and he said to go to er if it happens again. I have taken ibuprofen and codine when the pain is un bearable inmy back. I can´t do my 2 mile walk that I do daily due to being tired all the time no appetite and in pain. I don´t like this but need to do it for live mets. I am also on Navelbine IV every 2 weeks.
How long are these cycles. does this stuff work...anyone want to share success on liver mets?
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Ladies, I'm struggling. I've been taking Xeloda since July 30, initially 4000, very quickly reduced to 3000. I am 7 days on and 7 days off.
This is the end of my 6th week, or what would have been my 3rd set if I'd been about to do 14/7. I am nauseous. I ache everywhere, especially in my weak points (lower back, knees). I feel like I'm 64 going on 90. Because of my IIIa diagnosis, pre-surgery, and both a small remaining tumor as well as 6/14 nodes positive with axillary dissection, I really need to take this stuff. We TNBC folks don't have many options.
It may be that when my anniversary of treatment came and went last week, it's had me a bit down. Feeling the breeze in my short hair, wearing the clothes I wore for my IV chemo, still struggling with range of motion and doing PT for the surgery and radiation on my right side . . . and now it's been a full year. I expect to start the clinical trial for Keytrude Dec 5, so I will have 35 days off from Xeloda. If I do not get in the medical arm (get Keytruda), my MO will want me to finish the normal amount of Xeloda. That will be 14 more weeks of 1 week on, 1 week off. If I do get Keytruda, I will get it through my port, once every three weeks. For all of 2019.
But I am alive and have every expectation of being alive for decades to come. This is just really, really hard. Thanks for letting me vent.
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Hi PaulaAtlantaGa,
Your post really resonated with me. The journey isn’t for whimps. It can be very very hard. Hang in there and know that one day this will be behind you and you will be thriving and loving life again. One step at a time. One day at a time. In a few weeks it will be one year since my surgery. I finished Xeloda August 3rd. I’m getting stronger day by day. You are too. It just doesn’t feel that way sometimes!!! Glad you vented here. I am glad for this website and topic. Y’all have been a source of strength for me along the way and i hope I can somehow return the favor.
We can do this! 💕0 -
Hi Paula, you are one tough cookie! Looks like your MO planned well for your trial and Xeloda. I hope you will recover well enough for your up coming trial.
Chelsea, I too gained strength and comfort by being a member of this site and topic. Thank you all for lifting me up.
I finished Xeloda course in early September. The recovery process involved a bad peeling and cracking of my cuticles during September. My feet and hands are almost back to normal now. MO didn't find any suitable trials for me. I was hoping to get into Pallas trial but there is none nearby. Just started my second box of letrozol. Most things seems to be as usual except that I experienced some abdominal cramps from day 20, had to stop taking letrozole one day due to constant cramps. My GP did strip test on my urine, said it looked like UTI, prescribed antibiotics which I haven't bothered to take. She also sent the sample for lab test and I haven't checked the result. I still have occasional mild abdominal cramps. I will wait and see.
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Hello ladies,
I just read all the pages to better understand what I will be getting into. For some weird reason I was under the misconception that it would be easier since they are pills that you take for 6 to 8 weeks. My MO corrected the 6 to 8 weeks, more like 24 weeks plus. And now when I read the SEs, ☹️. I was just starting to feel and look like myself, I got an overall tan on AC which has subsided nicely, hair has started to come back. I am still struggling with Taxol SE, numb tingling fingers and feet and body ache. I do not know how I feel about getting back into this again.
A bit about myself, I am 40, got diagnosed in March 2018 with TNBC, went through 4 DD AC then 12 weekly Taxol. Last chemo was on 13th August. Had lumpectomy on 6th Sept and now I am undergoing rads. Have few more to go. Will start Capecitabine sometime in Nov.
Questions: How much of a gap should I have between Capecitabine and radiation? Also, can I take a month off in between? I really want to visit my parents and they live overseas.
Stay strong everyone. Thank you for any suggestions.
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Hi Frog,
I started Xeloda three weeks after finishing radiation. MO wanted to give my body some time to regroup before starting.
I too was disappointed to learn that after chemo, surgery, radiation, and Letrozole I needed to go on more chemo. MO kept reminding me to give myself a break during the series Xeloda. That the common misconception is pill form chemo is easier since it’s a pill. In some ways that’s true, but it’s also still a very strong chemotherapy with side effects to be managed. There is data to support going on Xeloda for improved prognosis. I’m very glad I did it and would do it again in spite of some really tough days.
We can do this! 💕0 -
Hi Frog, good luck on finishing rads and getting started on Xeloda. When I finished rads, we talked to a couple MO’s about trying to find a clinical trial instead of doing Xeloda. No dice plus we moved so I started in Sept after finishing rads March 31st. Probably not the preferred approach but just mentioning that you may have some leeway to visit your family. All along, I knew that if I delayed starting and had a recurrence, I’d be dealing with a difficult situation. TNBC is nasty stuff. BTW, I’m in my 2nd cycle and not having terrible symptoms. I did run into blood count issues and had a brief delay starting#2. I’m walking the line between keeping my life going & respecting how strong these drugs are. Best wishes
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