Xeloda and TNBC
Comments
-
Warrior2016: I'm glad to hear your SE have gotten better. I'm having some dizziness since starting X, but I tend to get mild vertigo when under the weather and/or tired. If getting out of bed or a recliner makes you dizzier (or waking up suddenly does), it could be vertigo. If you've never had one before, brain MRIs are loud and noisy, and the machine shakes some. Most places give you noise cancelling headphones that let you communicate with the tech and also listen to music. I've had a couple of these, and being able to focus on the music has really helped.
I got my chemo port removed yesterday. I feel more raw than sore where it was. It was a weird experience. The place where it was removed (different from where put in) does a lot of chemo ports. The staff seemed to think this was a celebration worthy milestone, and that I must be done with active treatment. Um, no. Radiation starts in October. And active treatment is no more one size fits all than cancer itself is. I know they meant well, but it made me feel worse. "No, sorry. I'm a chemo failure. I'm on a chemo pill - no, different than tamoxifen - and radiation's yet to come. Hmm? Triple negative. Nah, they're really not all the same ...."
On a less morose note, I got a couple pairs of comfy, cute shoes today including faux yellow snakeskin Dansko clogs! All the nurses at my infusion center wore these. The one I talked to about it said they were wonderful for sore feet. I'd actually forgotten that until after I bought them when my chemo-addled brain was like, "Hey, this is what the nurses wore." They are very comfortable. And I like interesting and fun accents. Life's too short to be boring!
0 -
FelineMum-
I actually did have a brain MRI after a concussion many,many years ago when they were kind of new. My light headiness occurs at all times - just walking and bam! It's there. I've always had the dizziness when standing up. I've had to give up yoga because I can't do all the bending over right now anyway. I'm taking tai chi instead. I even get light headed during that. I have been pushing through the exhaustion to go to class.
I wish they hadn't removed my chemo port because they are having a lot of trouble getting blood from me now. My veins are too tiny, they are scarred. The technicians have settled on my hand until I hear that it is too scarred, too. Port removal is not a celebration when you are still on chemo. Nurses should be more sensitive.
I remember my chemo infusion nurses celebrating me when I had my last chemo - or actually when I went in for chemo and after the blood test the doctor called it. It had been stopped before to let my body heal a little then started again and this time they ended it completely. So, while the nurses were celebrating I was crying because I couldn't finish chemo and I felt like I had to do it all to prevent mets. I've just been told that I may not finish my Xeloda as my platelet count is dropping.
I lost toenails during the first rounds of chemo, I have neuropathy, and now hand/foot syndrome. Clogs are about all I can wear if not flip flops, but I don't mind as I have always loved clogs!
I'm starting to worry about bone mets. My left shoulder blade is so sore to the touch. I have no trouble moving it. It feels like the bone is bruised. I guess this is the kind of worry I'll be having.
Wishing everyone a happy day.
0 -
Cancer: The thief that keeps on stealing.
The things people with cancer give up to stay alive. It's mind-boggling. One thing I meant to do for years that I have finally done is the paperwork for a living will, a healthcare advocate and clearly spelling out my treatment wishes on paper and adding it to my medical record. I live in one of three states that doesn't legally recognize these things and DNR orders aren't honored in hospitals or hospital-like settings. Pure Michigan!
My online test results now show my chemo port removal summary. "Treatment status: Complete." Seriously? One reason I got it out now is I want where it was healed before I start rads.
Warrior2016, is there a vein team or the equivalent where you get your labs? It's now normal for there to be nurses or techs trained in using vein finding equipment to avoid the nightmare of, "Is this a good vein? Nope. What about here? Hmm ...." Mileage varies with location, but with scarred veins, it can't hurt to ask. I'm hoping you have vertigo. Mine is mild, but my mother and grandmother have it much worse. I think it's sent both of them to the ER at one point or another with heart attack-like symptoms (not wishing that on you!). It's treatable with medicine. That's the part I'm hoping for.
Worrying. How do we balance overreacting vs. being aware of dangerous changes in our bodies? Hypochondria vs. gut intuition?
I wish I knew.
0 -
Hi ladies-
It looks like I will be starting Xeloda in December after I finish rads- I was just curious for those of you who are pre-menopausal, did your periods stop when you started Xeloda? Mine stopped while on AC-T, but came back about a month after finishing. I had some pretty unpleasant side effects from the lack of periods which I was hoping to avoid this second time around. Thanks!
0 -
Sam0623,
Everyone thought I was in full-fledged menopause after six cycles of Taxotere and Carboplatin (and starting out peri-menopausal). My periods stopped after my second cycle of the above - and returned a month after I started taking Xeloda. That was about 3 months after finishing my infusions.
Unpleasant side effects. That's an accurate description. (wry grin)
0 -
FelineMum,
Haha, I was trying to be nice. Truthfully, the side effects from sudden chemical menopause were as bad if not worse than the normal chemo side effects. I prayed for months to have a good response to chemo and for my periods to come back. I guess atleast one of them came true!
0 -
Sam0623,
I hoped my periods wouldn't come back! Why go through menopause more than once??? Alas. Now I'm back to dealing with hormonal migraines without my most effective tools which were hormonal birth control. My oncologist told me that my wacky hormones could still be a part of menopause. I'm hoping. Apart from migraines, my PMS was never that bad and I could live with the cramps and back pain. Now, it's totally different.
In conclusion, YMMV. The unofficial motto of CancerLand.
0 -
Hi all. Just met with my MO today. 4 weeks post op with incomplete response but negative lymph nodes. She suggested a trial with one arm being Xeloda and the other arm being carboplatin. Not sure what I will get. Has anyone else been offered this
0 -
I haven't been on in awhile - life has been a rollercoaster and I guess I am just depressed. Last week I found out I had mets to the bone - have had all sorts of tests and will have a bone biopsy this Thursday. I have spots on a rib and my sacrum. The doctor is sure it is bone mets but wants to see what the biopsy shows - if it is my triple negative. I am so numb - I haven't cried, I haven't gotten angry. I guess it is shock and depression.
I am so exhausted - not sure if it is the 6th cycle of Xeloda or the depression. I have been exhausted with Xeloda but this is really bad. Mornings are good and I get things done but by afternoon I am sound asleep for 2 to 3 hours. Then I sleep 8 to 9 hours at night which I haven't done since I started menopause at 47 and I am 65!
Nunna, I had carboplatin before my mastectomy with taxol. Actually I did the adriamycin and cytoxen, then the taxol and carboplatin, then the mastectomy, then the Xeloda. I wonder what's next?
Blessings to all.
0 -
Warrior2016 - I am so so sorry to hear about the spread of the disease. I will keep you close in my prayers. But know that there are lots of treatments available for metastatic cancers and women lives many many more years using them. Don't loose hope and faith. Search out those boards and talk with some of them. Let knowledge be your power and take back some control!
0 -
Nunna - I was offeredbut did not qualify due to the just slightly too small of cancer remaining. My MO then went with Xeloda outside of the trial. I was trying to get into another trial for the folate receptor alpha peptide vaccine, but have struck out on that one too. One of the blood panel tests shows I have an autoimmune disorder. I had no idea and now go into more testing to figure out which one. The good Lord has a path for each of us, and I hope hes walking beside us. Good luck on your trial
0 -
Warrior2016,
I'm so sorry to hear your news. I know you feared this. I wish I knew the words to help at times like these.
You've contributed so much to this board. To me, that alone shows you have much left to give. If it's what you want, I hope you continue giving.
You don't control having cancer. You do control how you react to having cancer. That includes treatment decisions.
Again, I'm sorry.
0 -
Warrior - I am so truly sorry to hear this news. I see you are in PA, as I am. Some very good cancer centers here and it seems many are doing clinical trials for TN. I will be hoping for you to feel better and get stronger
0 -
Thank you all for your kind words and best wishes. I had my bone biopsy on Thursday and now have to wait for the official results but they do expect it to be bone mets. I'm just glad the biopsy is over - it wasn't near as bad as I heard!
VL22 - I go to a Breast Cancer Center in Harrisburg and am really pleased with their care. It's an hour drive each way but worth it. I am already in a clinical trial for TN but was randomly thrown into the control group which uses Xeloda. I did 4 months of my 6 month course of treatment but the doctor has stopped it until my biopsy comes back.
I have faith and will fight on!
Blessings to you all and I hope you are winning your battles.
0 -
Dear Warrior2016 - I'm fairly new to this board but please know I'll be praying for you. Did they tell you when you will get the results of your bone biopsy? The waiting for results can be very stressful (at least is has been for me) but then you know what you are facing and can work on it. All of us TN sisters are here for you as you graduate to being Warrior 2018 and beyond!
0 -
Warrior - I'm so sorry about the mets, I will be thinking of you. You have shared so much on this board which resonates with me. Sometimes knowing someone had similar reactions to the drug (even after the fact), makes the experience much less lonely. You have helped me be less lonely here. So thank you so much.
Super Survivor, I always appreciate your positive vibes. I always feel better after reading your posts.
I've been away from BC.org for a month or more. I've spent 2 months trying to deal with increased pain (from surgery or radiation) and increased anxiety, increased irritability. I have screamed (which is way worse than yelling) at my son for not doing some homework problem correctly. I could't stop myself and we both ended up crying together. I have tears in my eyes just thinking of that day.
I visited 2 doctors about this pain and irritability (increased depression). Both the doctors said I needed to take yoga (along with MO, whom I have not seen lately). So I prioritize yoga twice a week (gentle yoga for cancer patients/survivors). The surgeon said I needed to get the prothesis and a bra and stop wearing my post surgery camisole. That the camisole is probably why it feels like someone is sandpapering my chest all the time. So I got my prothesis and 2 support bras. I wore them for several days, It did help with the sandpaper feel, but the pressure against my non-breast area got worse throughout the day. I went from gel prothesis in support bra, to foam prothesis in Genie Bra (L) which would be my correct size. But I have two XL. What feels the best is XL Genie bra with fiberfill wrapped in an old old bandana as my foob. Surgeon also suggested Aspercreme (analgesic - which is great).
Psychiatrist suggested ativan as needed in the morning. And to take gabapentin. Before using the prescription, I explored fully ibuprofen and Tylenol and determined Tylenol has no effect on pain. Ibuprofen does have an effect on pain, but I'm not allowed to take it in doses high enough to make any difference. So gabapentin 100mg is starting to work, It is for nerve pain. I had taken he 300mg some months after surgery when I still had a lot of pain. 300mg put me to sleep. I stopped after 2 pills, I can't sleep all day.
I'm writing all this in case this helps somebody now or down the road.
I'm on my 5th cycle of Xeloda. My 4th cycle had to be stopped early (1.5 days) due to the really bad hand foot syndrome (feet only). So instead of 7 days off, I had 16 days off and that moves my end date from Dec 21 to after the new year. Now that the end date is in 2018, I've asked my doctor why he selected 6 cycles vs 8 cycles. He said I might be able to do 8 cycles if I do well in the first 6. I have not been able to get into any clinical trials. So this is my last line of defense for now. I'm hoping for 8 cycles. The more the merrier with TNBC.
MO lowered the dose of Xeloda for cycle 5 (3500 mg per day instead of 4000mg a day). Obviously my feet were in very bad condition at the end of cycle 4 so I was thinking what I could do to lesson the HF syndrome. I decided to stop walking for exercise or recreation and stop walking my son to school. I think the combo of lower dose and doing much less walking is how I'm going to make it thru this cycle. So if you have HF syndrome, try walking as little as possible. I drive everywhere now. I started feeling sensitivity day 3 and day 9 (today) it has just gotten to barely tender. This is so much better than 4th cycle. I was sending pics of my feet to my MO and oncology pharmacist every couple of days and by day 9 I was in much worse condition. I think it is the combo of lower dose and stopping doing so much walking.
I thought the pain and irritability and anxiety were part of the same problem. Getting rid of most of the pain has been a Godsend. I'm not taking ativan during the day, now that the pain is mostly relieved.
Thank you all for sharing your news.
0 -
Thank you all for the understanding and the support. Since I metastasized on Xeloda I have been taken off of it. I was going to enter a clinical trial at the National Cancer Institute but the timeline for tests and consults to chemo is 2 months. My doctor says I don't have 2 months to wait - I'm the one who grew a 2 cm tumor 10 days after a breast MRI only showed scattered cancer cells. So, I am going on Eribulin. I'm still numb, I guess in shock. I guess I am depressed, too - kind of a flat affect. It will hit me someday. I know it is palliative care and I know the next step is hospice. I hate this damn disease. Don't we all?
Blessings to all of you. Even though I am off Xeloda I will check in occasionally to see how you all are doing. Is that okay?
0 -
Ladies - you take my breath away with your daily bravery and strength. Just getting up to forge through your day takes more than people know. I’m keeping you in my thoughts and prayers. Warrior - look into care for the depression, if you can. Each day is truly a gift to be lived. Also, there are some very inspirational boards for those with metasic breast cancer, where you’ll find more amazing women like you. God’s blessings. ✨🙏🏻
0 -
Hi all,
Just finished 3 rounds of Xeloda and after the CT scan, onc tells me he wants 3 more rounds and they would like to take out all of the breast and axillary lymph nodes followed by radiation. I think the extent of surgery will be determined by how much Xeloda can shrink. So far the largest tumor under my arm shrunk by a centimeter.
I'm wondering if any of you had a considerable number of lymph nodes removed and what is the experience with lymphadema? I teach hot yoga and am concerned I won't be able to maintain my current level of movement afterwards. I'm so tired of the constant monitoring and feel like a piece of meat that constantly gets cut away. Oophorectomy is also in my near future and hoping to get that done in the Spring with the node removal. Hope you're all doing well with the holidays
0 -
Cam’s - how great that your tumor has shrunk so much!! I had 7 nodes removed during my lumpectomy last year this time. I am very active with once a week weights with a trainer and fours days a week of just cardio on an elliptical. I went to a physical therapist who specialized in lymphadema prevention. She gave me exercises and instructions for self-massage. See if your oncologist can refer you to such a therapist. I was more sensitive at first but feel less at risk for lymphadema now. There are threads specific to lymphadema if you search on that word God bless✨
0 -
Hi everyone...my MO has recommended Xeloda because I did not have a complete response to neoadjuvant chemo, there was just a tiny bit of cancer remaining when I had my mastectomy. I am currently undergoing radiation and will complete that at the end of January. I need to decide by then if I want to take the Xeloda. The thought of having chemo side effects again is unbearable, but the results from the study in Japan certainly support it. I also hate the thought of it because it will delay my exchange surgery, and the tissue expanders are so uncomfortable! If anyone has advice or recommendations, would love to hear those but there seem to be a lot of you in similar situations that are using the Xeloda.
Question...has anyone experienced hair loss with the Xeloda? Of course hair is secondary to complete healing, BUT I spent a lot of money, time, and discomfort saving some of my hair during my chemo infusions by wearing the Dignicap. I don't want to lose my hair now after all that.
Thanks everyone!
0 -
SoniaL:
Hair loss is uncommon with Xeloda. I'll put my favorite link about X below. It has side effects in a chart listed by frequency (Tabulated list of adverse reactions). It's in British English, so radiotherapy = radiation, and stuff like that. It also cites different studies.
https://www.medicines.org.uk/emc/medicine/4619#UND...
I've had three surgeries while on X, including two for carpal tunnel. It's more about your blood work results than anything else. That said, my PS won't exchange until 9 months after radiation ends. He says the body needs enough time to heal or the risk of complications is much higher. Every doctor is different, but perhaps having to wait could be a good thing.
X is not like the chemo you had before. You're looking a set of different potential side effects from a very different drug. Major chemo brain and constant fatigue have affected me the most. I'm also nearly fanatical at treating mild Hand & Foot Syndrome in my feet and taking measures to prevent it from occurring in my hands.
The following is an excerpt from The England Journal of Medicine report on a study on X. The "Japanese study" (CREATE-X) continues, with major American media covering an update in Summer 2017.
X = capecitabane.
RESULTS
The result of the prespecified interim analysis met the primary end point, so this trial was terminated early. The final analysis showed that disease-free survival was longer in the capecitabine group than in the control group (74.1% vs. 67.6% of the patients were alive and free from recurrence or second cancer at 5 years; hazard ratio for recurrence, second cancer, or death, 0.70; 95% confidence interval [CI], 0.53 to 0.92; P=0.01). Overall survival was longer in the capecitabine group than in the control group (89.2% vs. 83.6% of the patients were alive at 5 years; hazard ratio for death, 0.59; 95% CI, 0.39 to 0.90; P=0.01).
Among patients with triple-negative disease, the rate of disease-free survival was 69.8% in the capecitabine group versus 56.1% in the control group (hazard ratio for recurrence, second cancer, or death, 0.58; 95% CI, 0.39 to 0.87), and the overall survival rate was 78.8% versus 70.3% (hazard ratio for death, 0.52; 95% CI, 0.30 to 0.90). The hand–foot syndrome, the most common adverse reaction to capecitabine, occurred in 73.4% of the patients in the capecitabine group.
CONCLUSIONS
After standard neoadjuvant chemotherapy containing anthracycline, taxane, or both, the addition of adjuvant capecitabine therapy was safe and effective in prolonging disease-free survival and overall survival among patients with HER2-negative breast cancer who had residual invasive disease on pathological testing.
0 -
SoniaL,
I will be finishing my first cycle of Xeloda tomorrow and I'm happy to report it has been pretty uneventful so far. I feel a little foggy again (chemo brain I believe), but no nausea. I too saved a good amount of my hair using cold caps during the AC-T and I'm happy to report I haven't lost anything on Xeloda. I also noticed they list hair loss as a side effect, but I think it's pretty rare and usually just thinning. I too feel a little stupid worrying about this, but it was a lot of work to keep it so I'm glad it hasn' been impacted by this treatment.
0 -
FelineMum and Sam0623...thank you so much, this is encouraging to hear from you both. The side effects are never fun, but the numbers support the treatment! It's so good to hear that hair loss is not a big risk. Thanks for sharing your experiences, and I wish you both well.
0 -
Six weeks.
I have six weeks left of taking Xeloda.
My feet hurt. My hands hurt. Both look weird. I've gone from fatigue to exhaustion. Nausea is a constant. Big D days are happening more often.
SIX WEEKS!!!
The end is near. My last day will actually be near my Dx anniversary. I hope X is what my body needs to fight this vile, wicked disease.
Warrior2016, you and your fur child remain in my thoughts.
Best wishes to my fellow TN'rs for a peaceful and healthy New Year.
0 -
Hi SoniaL
I just finished 6 cycles of Xeloda. I have chosen to do 2 more cycles. Side effects include fatigue, neuropathy, and hand foot syndrome. I am constipated, I have been since November 2016 and it is the new normal. No I don't have diarrhea with Xeloda. The neuropathy is in my fingers and toes. I trip up the stairs often because I guess I don't feel where my toes are, that is all I can guess. The worse SE has been the hand foot syndrome. My feet have become red and sensitive and that went to painful at one point. My MO lowered my dose and I stopped walking for exercise or recreation. Both made a huge difference.
I have had to stop for awhile to get the HF syndrome under control. Around cycle 3 or 4, I got really bad HF syndrome (only feet, painful). I took a 16 day break between cycles instead of 7. Right now between cycle 6 and 7, I'm also on a 14 day break because of the HF on my fingertips. It is still on my feet. I don't walk much, so that and 40% Urea cream keep it at bay. I am also wearing nitrile gloves for eating, preparing food, and using the toilet. I don't want to wash my hands multiple times a day when going to the bathroom, so I just use a nitrile glove on my hand to wipe (with TP of course) and then just throw it away. At other times a day, I am wearing cotton gloves.
0 -
Hanging in there...thank you so much. This is good information about side effects and how to manage the hand foot syndrome which definitely sounds like the worst part. I dread that so much. I had some neuropathy during my Taxol chemo; my hands are back to normal but feet still have some tingle and numbness, I hate to think about that getting worse again. But thank you for sharing the ways you have tried to treat and prevent it. I will definitely do all of those, especially great idea about the gloves so you don't have to wash hands as often. Good luck with your next two cycles, you're almost done! Sending prayers for your complete healing.
0 -
I'm just starting cycle 5. Compared to everything else (chemo, surgery, radiation), X is pretty uneventful for me so far. My MO lowered my dose by 300 mg/day before cycle 4 because of ongoing neuropathy in my hands that started 3 weeks after I ended docetaxol in August but was starting to get worse in December. The lowered dose made a definite difference and I'm improving.
I've been tired for a year so I don't know how much is attributable to X and how much is just the cumulative result of everything.
I use a lot of cream on my hands and feet and my skin is doing well although I did lose my fingerprints for a few weeks. They're coming back!
My hair is continuing to grow pretty well.
I had some diarrhea after cycle 3 but none on the lowered dose.
My MO is clear that if I start to get bad SEs, I stop taking the pills and call him so he can tweak the dose
0 -
Hi Nunna. I'm new to the site and just read your post. I was offered the trial or Xeloda outside of the trial. I chose the trial and started 11/14 in the Xeloda arm. Just completing my 3rd cycle and enjoying my week off.
I’m halfway!!! For me, this is much easier than AC&T but it still has SE. I've experienced fatigue from the start but it's manageable. This round the Hand/Foot started. Soreness and burning. Still manageable. I started wearing tennis shoes at work and that has helped (it's a great fashion statement with my dresses). I also started 40% urea cream and it has helped a lot. My hands and feet are improving during the break so I'm hopeful that I will be able to get through round 4 at full dosage.
For others that have asked - no hair loss. I do have to share that losing my hair turned out to be a blessing in disguise. I've always had long hair and thought I couldn't pull off short hair. Who knew that I'd look good in short hair and embrace my new salt n pepper look. I get so many compliments on my hair (even from strangers).I'm loving not spending time styling my hair or having to color it.
Sending strength, comfort and best wishes to all.
0 -
Hey ladies- How many cycles of Xeloda dis you ladies take? I assumed I would be getting 8, but my NP mentioned something about 6. I assumed 8 because that was what the main study used..
0
