All about Xeloda
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I just came back from my Onc. Hands are fine. My feet after one week break are perfect now.
So....I will have the same dosage 3800mg per day, but not 2 weeks one week off. Now its one week, one week off etc
To early to have scans. My last pet scan in February showed 2 tiny liver buggers. 0.8 cm . I was on all the other soft treatment because of progression in Lymph nodes oinly. Since 4 years changing one treatment after the other because of Lymphnodes. Everywhere else was clear.
Its ok to take the Xeloda, but what is sooo much bothering me, is that I think too much ahead.
If this Xeloda will stop working,( and it will one day or the other ) IV Chemo with loosing hair is then my next option.
Damm.......
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I've been a bit MIA from this thread for a while. As an update - it looks like the BC has moved to my leg. I have had severe leg pain since I twisted my hip 3.5 weeks ago. Originally urgent care d'd it as a growth in a bone spur I have, so I thought it was nerve pain. I had a MRI last week and I saw the Orthopedic doc/surgeon today. It turns out I have a small crack in the top of my femur - caused by weakness from a new BC spot. So I going into hospital tomorrow to have pin(s) put in my femur and hip. They will also get a biopsy on what they find. Radiation will prob be in my future too
Whatever happens, this well be me moving off Xeloda. TBH I've had a bittersweast relationship with Mdme X. I've had 2 great scans. But I've also had miserable side effects. I was hoping to stay on it if my next scan (in mid April) was showing continued success - not wanting to give uo a successful drug. However, this would have been to the detriment of my feet and hands and with gritted teeth!
I wish everyone on this drug fantastic success, and to have minimal or no side effects.
I am not sure where I will pop up next - but will let you all now here how I get on with my op.
big hugs
Sarah
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Sorry to be asking again. Yesterday when I saw my Onc, he said that if the X is stopping to work, IV Chemo would be the next treatment.
I mentioned if there where other " soft" treatments out there. ( keeping my hair, leading a normal life..)
No.
I cant believe this, having a hard time.
You have any suggestions, or confirmations ?
Let me know please.
Carol
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Chemotherapy drugs MOST likely to cause hair loss
- Adriamycin (doxorubicin)
- Cytoxan (cyclophosphamide)
- Daunorubicin
- etoposide
- Ifosfamide
- Taxotere (docetaxel), Taxol (paclitaxel)
- Ellence (epirubicin)
- Irinotecan
- Topotecan
- Navelbine (vinorelbine)
- Ixempra (Ixabepilone)
Chemotherapy drugs that SOMETIMES cause hair loss
- Cytarabine
- 5-FU (5-fluorouracil, Fluorouracil, Adrucil)
- Gemzar (gemcitabine)
- Vinblastine
- Bleomycin
- Busulphan
- Vincristine
- Amsacrine
- Lomustine
- Melphalan
- Thiotepa
Chemotherapy drugs that RARELY cause hair loss
- Paraplatin (carboplatin)
- Carmustine
- Methotrexate (Amethopterin, Mexate, Folex)
- Mitomycin C
- Mitroxantrone
- Procarbazine
- Raltritexate
- Platinol (cisplatin)
- Fludarabine
- 6-Mercaptopurine
- Xeloda (capecitabine)
- Streptozotocin
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Mamita49,
What about anti hormonal therapies, like aromatase inhibitors, faslodex, or even better a combination of an anti hormonal with a cdk4/6 inhibitor such as ibrance or kisquali? I hear there are Canadian trials for kisquali (ribociclib) and that it is the easiest of the cdk 4/6 inhibitors to access in Canada. It is typically combined with an aromatase inhibitor. Have you done any anti hormonal therapy yet?
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Thank you so much for the list. Lots of those Chemo's are for other cancers, like lung cancer, colon cancer etc.
Not many of them are ONLY or Also for MB Cancer. So the list is good, but does not apply to breast cancer people only..
I did faslodex, Afinitor, and Irance since 6 years. Before that Tamoxofin, Arimidex and Aromasin.
But hey... More suggestions welcome.
Maybe I am missing info.
Carol
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Mamita, what about letrozole with Ibrance? It may not be an option as it's very similar to Aromasin and Arimidex but you could ask. Losing our hair is not fun but if there is an upside, I don't miss having to style my hair. Just throw on the wig hat and go. I have a very pretty one that I get lots of compliments on. Once I even responded to a stranger that she could have it too! Lately I've become more comfortable going without the wig and just using a scarf or hat. That took awhile. And I totally get thinking too much about the future. Practicing mindfulness meditation is helpful for me with that.
Lisa
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Denny,
Wow. You just gave me so much inspiration. We all need to hear from more survivors like you....it makes me really believe that this disease can be managed. I am going to be on chemo for the rest of my life as I don’t respond to the hormonal therapies. So your post is so encouraging. God bless, and may you have many more years to come!
I’m on 7/7 with Madam X, and am on my first week off. No SEs yet, but am waiting to see if the HFS is going to appear. Hope not.
Thanks again for your post
Laurie
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Mamita, like you I have taken all the hormonals. And yes, I have sort of (maybe??) resigned myself to the fact that when X stops working they will put in a port (my first one!) and I'll be tied to the iv pole.
It's really really hard. Feels like a major step towards the end. And I've already started preparing at work for the day that I can't do it full-time.
But in my early stage days I met a lovely lady in the infusion room. She had metastatic colon cancer. She cheerfully told me she'd been in that chair every three weeks for NINE years. My jaw hit the floor. But she went to work each day and lived her life. Didn't have a family -- her parents were with her. I aspire to be that.
And I think if X holds on long enough there will be a good immunotherapy trial for me.
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Sarah,
I'm sorry to hear about progression to your leg. I will pray that all goes well with your hospital visit and surgery. I hope to see you in another thread....we all need each other to get through our day to day management of this disease. Best wishes.
Laurie
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Wanted to let this group know that JFV (Joan) passed away Wednesday.
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thank you Sherri for that update. I am saddened to hear of yet another loss. My thoughts are with her family and friends
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Sherry,
I am so sad to hear this. My prayers will be said for her family. It hurts to hear when we lose anyone, as the woman on this site feel like sisters. RIP Joan
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I had only been off Xeloda for 6 months but the fatigue factor is very noticeable having just started it again. Thinking of all of you out there. Hopingbits eorkingbits magic fir all of us.
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ok, so i found some white cotton gloves to wear, after i slather on the Aquafor at night. Woke in middle of night to realize i was missing one glove. So i start looking around and finally found it on the`floor, so gonna need to re thi k this as when i slept with silly white socks on my hands, the did not fall off! Oh well, this morning my hands do look better.
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Sherry - thanks for letting us know about JFV (Joan) - we have lost too many lately like Kandy.
After my nasty head fall (low BP and marble floors don't mix), and waiting for mouth sores to heal from skull met rads, I will be restarting xeloda in 2 weeks. Good news was my CA 27.29 was only 92 - having been 171 in January - so rads do help. Moving to 2500mg 7/7. Is anyone on that combo? I'm confident I can find some cool sketchers and make this work. My new job starts 8/1 (and my London vacay is first week of June), so hoping HSF won't be so bad - but will re-read your many tips. Pajim - you continue to be an inspiration of how to work and travel and play on x. Taking a page from your book. Leftfoot - rooting for your return to x to be a good one. Shetland please keep me posted.(()) Claire
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Hello Ladies,
I have been on Xeloda for one year. My finger tips hurt and my feet are cracked and sore. I’ve tried everything. I started using Aquifer and sleeping in socks. In just a few days it went away. It was recommended to me by someone in the army. Try it. I also got second degree burns on my hands from the sun in Africa because I was taking Doxycycline. The pain was awful. I’m healing and no more pain. Hope this helps.
Anit
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hi photogirl, yeap i use aquaphor as well. Course i slather so much on my hands in the am, i have to wait for it to soak in due to sticky but it is is helping. Course, i am only on it for less than 4 months
Nice day today, back from some errands
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hi Everyone, I'm hoping to hop on board this thread. 2 years into bone mets. Bone stable. Diffuse liver mets appeared this year. Have been on Xoleda 4300gsm a day. Only 10 days in. Will be scanned after 3 cycles. How long have people lasted on this? I' hoping I don't fail after 3 cycles. I feel a bit headachey on this. Not sure why but dull head.
Can anyone share any success stories with me?
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Lilly- a few posts back someone posted their mom has been on Xeloda over five years! It’s encouraging. Hope we all get five and then some
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I was on Xeloda fir over 5 years. After 6 months off they put me back on it. Hoping for another long run.
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Leftfoot- why did you come off it for six months
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wow 5 years! Amazing. I really hope to be that lucky. Not sure that's possible with liver involved but I pray I get as much time to raise my son. Wishing you all the very best on this treatment too. I know there are other options but I'm not too excited about iv as you can imagine!!!
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Dianarose- after 5 years on Celoda, the last 2 without an additional targeted treatment, I had liver tumors come back. So my oncologist put me into TDM1 to target my Her2 cancer.
Unfortunately for me, the TRM1 wasn’t able to keep my brain mets at bay. It was great fir my liver mets. Do back into Xelida I go to hopefully treat my brain tumors and hopefully continue to treat my liver ones as well. Gotta get my head taken care of first.
Lillymillie- Xeloda kept my liver mets at bay fir 5 years. It got rid of a liver full of tumors so keep the faith. It can wor
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wow that's incredible left foot forward. I know the Xoleda can work cross barrier for brain mets. It helps me to hear positive stories. Let's hope it you get another great run on it. Cyberknife or rads are probably an option too. I have read some of the other ladies have had very successful treatment.
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Lots of good information here. I was worried that the Xeloda wasn't working for me because I have hardly any SEs. Just fatigue and nausea in the beginning. After the second round my doctor reduced my dosage due to liver toxicity. Had scans two weeks ago and it appears to be working. I am hoping I can stay on this for a while.
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Did get a good phone call. My tumor marker went down from 55.9 to 48. Madam X is still working
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so good to here madam x is working for others, it is working for me
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Dianarose, that is great news. How many cycles of xeloda have you done?
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Husband11- it’s either 11 or 12
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