anyone treated with XELODA or CAPECITABINE

Another rough day at oncologist office today. Dr said he is mainly concerned of the size of tumor he used the word large,  and the fact the lymph node near in the area of vertebrae  L3 is too high ...not just in the pelvic area. lymph node.. above the pelvic line he mentioned it is not worth to check with bioplsy as they will radiate it anyway.. What really depressed me how cautious he was to send optimism my way.. very very cautious not to  say anything good .. the idea i got from the whole appointment  was  we will try but no guarantees.. accorging to him cancer is stage 3 and no further details were disclosed.

RE medication.. As i suspected they will use different medication called CAPECITABINE is generic drug name aka XELODA .. .

MYTOMICIN  is also added.

CAPECITABINE WILL BE TABLETS TAKEN TWICE DAILY.. he said there was waiting list for ports and emphasised on the convenience of pills vs port....as far as I read.. capecitabine is used for colorectal cancer..  he siad if i inisist he will do the port.. though he has not done it since residency.. Why should I insist? No clue why..

thank you for  telling me all side effects in advance.. i would not be able to handle it otherwise... it was too much from blisters to heart attack consequences...

i asked the dr why they are using generic is it  the cost? he said it is always the cost.. but he said capecitabine is converted by the liver as 5 FLU and it is the same medication at the end...it is just slower buld up of medication and I must take it 5 days a week at home twice daily  during the course of radiation.. for 6 weeks .. vs the IV, no port  a bit less side effects ... .. since he said it is ALWAYS. the cost.. i dont trust him now if this is the right med .. according to my study it is used for colorectal cancer with spread.. but as you all know anal cancer is different cell involvment and different cancer ...so anyone you know used this medication for anal cancer?

 

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When I talked to my doctors they were not very positive either. I didn’t have biopsy of my lymph nodes either. My doctor said the same thing that they will be radiated. I was asked if I wanted the port for the 5FU or take the pills. I don’t remember what the pills name was. Sorry. I choose the port because I have had stomach problems my whole life. I thought it could make it worse. Sorry im not much help.
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Hi Eva. I think that one or more members here were using Capecitabine instead of Fluorouracil, but I don't remember who exactly. I guess the problem was keeping these pills in the stomach because of nausea. Sorry, I can't help here. Did you get prescription for antiemetics? I would keep them home just in case.
Lucky, EVA like this comment
Eva, I just checked recent nccn guidelines for anal cancer. Capecitabine/Mitomycin are there as an option.
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Strange how different doctors are. My doctor after diagnosis told me that anal cancer was a rare & unusual one but a cancer that was "curable" and that the "standard treatment I would be having was gold star. I had a picc line inserted in my arm. This was used for my chemo drugs Mitomycin C & 5FU which I had week 1 and week 5 with 28 cycles of daily radiotheraphy. My picc line was removed after I had completed my chemo. It was also used to take blood so the nurses didn't have to keep looking for veins each time. It would seem in America they use a port & it is kept in for a while after but I'm sure one of the other girls can tell you more about that.
Your Doctor does seem to have an odd manner. Is he experienced in this type of cancer? Any chance of another doctor who is more versed in this type of cancer
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you are right.. he was very young and odd.. so yea, this is the reason my daughter looked for one more opinion
Eva, I used Capecitebine 2 x a day for the duration of my treatment. I had anal cancer. Over here in the Netherlands this is the standard protocol. I had one starter shot of 5FU, and then took the pills as instructed. I did have to stop taking them for 10 days because all the blood lab went way too low, and when I resumed I had a lower dosage. In my experience Doctors are usually guarded with their words about cure rates and outcomes. Having said that one Radiologist said that the anal cancer is one that can be
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I'm not sure about the chemo; as I had the basic, and by port. The port is more a convenience, some people prefer; I had daily irritation from mine (I think from allergic reaction) & got it out immediately after treatment. My sister loved it; cause they used it to capture her blood samples as well.
If it does come down to doing the port; I would recommend requesting a doc that is doing them often. Obviously, your doc, doesn't want to.
Hugs
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Eva, there have been multiple people on this site who were prescribed Xeloda instead of 5FU, and I don’t remember reading about drawbacks to that protocol. I had a PICC line, which is inserted without surgery into the arm just above or below the elbow (can’t remember which) and slipped out painlessly after chemo is done. It is used for both chemo infusions and blood tests, which are fairly numerous during treatment. I wouldn’t worry too much about generic vs. brand name drugs though. Most of us received generic even through they were referred to by brand names.
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Eva, I had the port and the 5FU and Mitomycin so I can't advise you there. But I did want to send some optimism your way. My tumor was big and I was stage 3B. My doctor said she had never seen so much cancer in someone's pelvis...the entire pelvis glowed on the PET scan. But here I am nine years later alive and well.
So stay positive and fasten your seat belt for the ride ahead. Don't hesitate to question your doctor if you think something they're telling you doesn't sound right.
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How are you. We were the same stage at the same time too. Just like you I am fit & well. There is life after
Lucky likes this comment
Yes, this is the oral form of 5-FU, and it is an approved form of treatment by the NCCN. It has less side effects as well I believe. Are they planning to give you a PICC line since there is a waiting list for port? It is not a great idea to give Mitomycin C via a regular IV, much better to give it in a central line. Don't worry about the generic drug, that is what is used mostly in the States as well. But if you have a PICC line you could do the 5-FU IV too. They put it in a pump which you take home with you in a fanny pack, and you keep it for 5 days, and sleep with it. It makes a little whirring sound. Keep us posted what is next!
Lucky, Linda like this comment
I had a PICC line . It is inserted right above elbow, inner aspect of your arm. It is inserted in Radiology, so that has to be scheduled. It is done under local, basically painless. The Mitomycin is given thru this 2 x . The 5 Fu is also given via the port over a 5 day interval, you have a fanny pack that you live with. Your weekly lab is also drawn thru this. No irrigation’s are necessary. Keep charging!!! You got this!
Nice work, BFACers, on validating Eva’s treatment drugs! I sure love you guys! Eva, I had a picc line in my arm . (5-FU and mytomicin) And, I never figured out what made one doctor choose a port and another a picc. Now, I am reminded there is the option of neither port nor picc and instead going with oral meds (xeloda). As long as NCCN supports it, that seems sufficient. But, how is the mytomicin delivered? The picc was really nice for the weekly blood draws and for contrast CT or PET., let alone chemo. The oncologist did not put my picc line in which I mention because your Oncologist’s comment about his lack of experience with ports seems strange to me. Perhaps you just keep this info about picc lines in your toolkit in case you need a new option later on. And try not to be dismayed by your doctor’s reluctance to be overtly optimistic as that is not uncommon. Know though that many of us were Stage 3 and still here to tell you about it. We look forward to your dance with NED 💃🏻
Anne, EVA like this comment
Hi Eva,
I was treated with Xeloda (capecitabine). I who persuaded my oncologist that I would rather have the 5FU in pill form rather than in a fanny pack. I had read a study from Sloan Kettering that MSKCC was using capecatabine for several years and found that it was LESS TOXIC than 5FU infusion and outcome was the same. I also noticed that Europeans were using Xeloda more often. I didn't ask about cost..insurance (Medicare) would have covered it either way. The NCCN Guidelines list Xeloda as one of the approved options.

I had a mitomycin infusion on Day 1 and then the Xeloda 5 days a week concurrent with radiation. I did not have the second dose of mitomycin the last week (that is also an option)

Everyone experiences different side effects. I experienced bowel and bladder frequency and urgency. My hair thinned a bit, but I did not lose a lot of hair...I was not nauseated...no vomiting...and no mouth sores. My white count did not go down and I was not hospitalized, nor did I miss any radiation sessions. I was fatigued and had very little appetite. Nevertheless, by the end of the treatment I was exausted (could barely ring the victory bell)and the treatment area was very.very sore.

I think most side effects were from the radiation. During the last 2 weeks, I developed hand and food disease (hands and feet become red and sensitive...painful), which is a side effect from Xeloda, but not everyone gets this and it disappears once the pills are stopped.

Capecetibine is used for colon cancer and some breast cancer patients have also used it. I really didn't want a port and a fanny pack and I thought the pills would be easier. I would probably make the same choice again. Iam phobic about needles(I revert to 2 yrs old when I get a blood draw!)

here is an abstract of the study from Sloan Kettering.

https://www.redjournal.org/article/S0360-3016(17)30708-3/fulltext#.W00MPW8iEQc.email

Of course, you should do what is most comfortable for you. What the Dr is telling you is accurate and is listed in the NCCN Guidelines.

Keep in touch .
Thank you Cleo for your information.. i was just reading FDA for xeloda.. but again i should read this in the morning not at night.. will lose my sleep. again thank you.
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July 2, 2020

ABBOTSFORD, Canada

May 19, 1956

Cancer Info

Anal Cancer

SQUAMOUS CELL CARCINOMA

June 30

3.1 - 4.0 cm

The disruption of what I perceived as normal. The Robber of joy and happiness,

Who your friends and relatives are.. what they are made of..

just be there and listen

no need of gifts i need your support

Abbotsford Cancer Centre

from people who experienced it.. all tips are welcome

from people who traveled this road.. please help.

LUMP NO PAIN

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