Thank you everyone who helped during my first week on and off Cape with so many suggestions. My winderfyk but elderly oncologist ran to the reading room and got a radiologist to read out my scan on the same day just before Xmas and then called me after hours to tell me that the abdominal CTcacsn finally showed what we had guessed at… spread into the liver and all around.. lobular and sneaky… so I started cape at 3000 mg/ per day. I am average size so that sounded like a large dose but I thought I have tolerated the others so well….. but cape was So much rougher than I expected. My onc is now away on vacation for a month but has spoken to me from his vacation in Florida to get an update when my feet blistered in first week of cape. He asked me to wait and take a 10 day ( versus 7 day) break to let feet heal, and now we will talk tomorrow to decide how much of a dose reduction to start back on. My feet feel hot and about to blister as I walk around the house still after 10 days break. My poor hubby enjoyed our walks with dog and now has to go alone. I feel abit house bound…on the worst day, I had to get something at the store and shockingly used the wheel chair as I had to go to back to the store. For an active person this was truly eye opening re the difficulty that some people face.
But All this is ok because my neck tumor shrunk quite a bit on just one week of cape!
but now that it has been 10 days drug holiday, I feel the liver giving me issues again with bloating and discomfort. So I am eager to get back on the horse so to speak and start back on cape. I know my oncs thoughts were to drop from 6 pills per day to five. Yikers! I’ve read some women are doing 3 every day. But with no break. That may be rough too.
If any of you lovely ladies have also started out rough, and had to adjust the dosage before settling in, do you mind sharing that part of your story?
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Bettybuckets
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Beth, I haven’t had the SE so can’t give much advice. I am also on a FB page for Capecitabine which is a mine of information. It isn’t just for breast cancer and some people do not have metastatic disease but the advice comes from those who have had experience with using these drugs. If you also post your question there you may get the answers you need quickly. (I hope that’s okay to mention another source of support here.)
My oncologist drops the dose by 10% at a time- I was having 8x500mg a day and now am on 6x500mg and 4x 150mg a day, on a 14 on, 7 off cycle. My SEs weren’t as bad as yours sound but are milder now- mostly sore and peeling a little fingertips in the middle of the tablet part.
Good luck with getting a more tolerable change in dose x
Everyone is different with regards to SE's. There is a pubmed paper on the dosage that states 2500 a day without losing its strength. I was on it for 8 months and it did nothing for me. I progressed instead. Never had real issues with hands and feet, just my heels were sore and then a little peeling of skin on finger, just below nail. I used olive oil and peppermint oil to relieve the pain. Normally the dosage is based on your weight, etc. Hang in there, I have read others have had a lot of success.
That bit about the wheelchair raised the hairs on my neck. The experience of having to be put into a wheelchair, to me, was one of the most humbling, humiliating, confidence shattering moments. I sincerely apologize to those of us who are reduced to living with a wheelchair. I feel for you so much. It is not what you chose.
thank you for encapsulating how I felt… but also grateful that the one chair was there. My head spun from being so able basked one day… dare I say I was pretty fit for a 62 year with MBC still lap swimming, big hikes in woods… and I had cycled outside in the cold twice since jan 1st and this was the next day! Just boom! I couldn’t walk and it was hard to choose to get into it… but not much choice as HFS grade 4 with blisters is no picnic. Now 10 days after stopping the drug, I wake up hoping to be normal… but still gingerly walking… asking my husband to go get things for me if a few rooms away. And today NOW with trepidation, I’m starting back on 4Cape pills/day. Knowing the affects are cumulative I am of course worried about how I will be in a week…. Will I be discouraged and think, how can I go in my trip to Nee Zealand in Jan 21st.?
hi. yes, I am one of those. very humbling indeed. my rapidly increasing lack of mobility and subsequent introduction to life in a wheelchair. thank you for understanding and caring. XO
I that this discussion chain that I brought up was insensitive. It was a real eye opener for me now what others go thru to get around. Wishing you time in the warm sun or other pleasures.
hi Beth. not offended at all. was just agreeing that transitioning to life in a wheel chair is indeed humbling. and takes some getting to. but there is always someone else who has it worse off.
that view from your kitchen window is spectacular. I can understand your desire to go back. I am rooting for you🙏💛
thanks for rooting for me! Today I am so much more hopeful… Cape on my 2nd week and now just 2 pills/ 2x day appears to be the sweet spot. I’m walking around the house feeling fine( not my usual long walks) my neck node is 1/2 the size and indistinct belly bloat snd discomfort is better or gone. And I went back to lap swimming! The trip is less than 2 weeks away so I should make it over to nz…. 7 weeks away is long so anything can happen while I’m over there but feeling this well, I can’t see cancelling. Just go and deal with whatever come up. Thanks so much Koko!
Hi, Beth: so glad to hear this...here is a link paste with a pubmed article indicating supplementing with Vit.B6 around 400mg/d was statisticlly preventive of HFS...
Your supermarket story brought back memories of Christmas 2021 when I was literally shuffling around the supermarket with my son because my feet hurt so bad. Hands too. Over time the symptoms diminished, perhaps as my body adjusted.
Just before Christmas this year I had a dosage increase (from 2000mg per day to 3000). My hands are a horror. As are my feet. Not as bad as yours—I am still active, but definitely uncomfortable. Assuming the dosage increase is working and slowing some Mild progression, I am hopeful the hands and feet will get better over time as they did before.
It’s pretty miserable not being able to walk or so basic things like chop vegetables.
I hope you get a dosage decrease in the meantime and that it helps.
hi PBSoup always good to hear from you. Glad to hear things improved over time ti tolerate it and hope will again in the bigger dose. Remembering back to the worst movements actually helps with the heat and now even though it still may suck, it helps to accept the average amount of discomfort when we think that this is helping to slow the train down. Glad those sons of yours were there and will be when you need them most.
I’m on cap 3000 per day. But my onc does one week on .. one week off … etc. He said studies have shown this to be effective and many less side effects than the 2 weeks on one week off cycle. So far ( 3 months) I’m doing ok. Yes fatigue and constipation but the hands and feet are just super dry .. no real issues. Plus all my new growths and nodes have responded to the cap! Hoping you can find good results!!
I started 2 days before xmas and took just one week on cape 3000/ day and wham.. blisters and sore feet and fingers tips still -for 10 days after stopping. Now I’m waiting to hear back from onc what dose to take.
My dosage was 1000mg am and pm for 1 week. Then the week off. When my feet became sensitive, she reduced the am dose to 500mg. That worked for quite awhile. When the feet hurt so bad, doc stopped it. I forgot how long before I saw improvement. It's been over a year and my feet are fine except the ugly toenail that came in after the other one fell off.Good luck with your meds.
Thanks for taking the time to write. I wonder are you a tiny person? I hear the smaller doses might be for smaller people. Did the drug fail or was it just too hard for you to tolerate so you went off if it?
No, I am just average but sensitive to all of these drugs. The drug was working but doc was looking out for my quality of life. Since walking was so bad, she stopped it. I almost went back on it about a month ago but after a bone marrow biopsy, she had me start Halaven chemo. After my 2nd dose, I had a blood transfusion. This Friday will be my next blood test. 🤞🤞🤞
I am thinking that I might have to go off it if I can’t walk more than around the house… but it is very portable and I am about to go to nz to see all my friends. We all like to hike.. but that is not possible for me on this drug. I will just the course and make decisions after I get back.
I urge you to make sure if your oncologist hasn’t already to get tested for DPD deficiency. If you are fully or partially deficient, your body is unable to metabolize capecitabine or 5 - FU and this can be life threatening. A simple blood test will determine this. As far as dose reductions, oncologists should follow CPIC guidelines. You can find out more about all of this at test4dpd.org. I lost my mother after just one round of cape. Do not ignore your side effects, they can be life threatening! Best of luck!
I’m so glad you raised this, and so sorry to hear of the loss of your mom for this reason, what a tragedy 💔 Ideally everyone should be tested for this before starting cape. My doc waited til we did that test before giving me the green light.
my onc is next door at Beth Iseral deacones Boston. He is older now and away in Florida si I haven’t seen him since oct. but he is very responsive.. I’m going to reach out to the team to ask if I can get that test.
HiI started on Cape in July 22 after spread to liver 2.5mm but they put me on 4800 mg per day 8 pills. It really affected my gastric system and they reduced to 4000. I wasn't prepared to stay on it so opted to go onto weekly IV palitaxol in November 22 which has been kinder. I had a scan last week and get results next week. Good luck on Cape it did not suit me but I know many people do well on it.
that seems just 2 big a dose! I asked if I could do 2 pills twice a day? Onc just tested and said yes but wants that just for 2x 7days with 2x 7 day breaks and then bump up.
That sounds better. They started me on the ridiculous high dose and I didn't realise how high it was until after the cycle. Even the 4000 was too high. In UK seems they give you it according to body weight but it really affected me I think if I had started on a low dose things might not have gone as they did.
I would also encourage everyone on Cape to get tested for DPD deficiency. It’s appalling that this is not standard operating practice.
My wife is tiny and she started on 3,000mg a day, two weeks on one week off, and she had to reduce that to 2,000mg, one week on one week off. It’s worked well for 9 months but is now failing.
I did not read the paper that recommended at least 2,500mg/day to maintain effectiveness, but I would just keep in mind that most clinical studies focus on maximum tolerable fuse as opposed to minimum effective dose. More and more papers seem to come out after FDA approvals that show lower doses than what was originally suggested remain effective.
I hope you can tailor the dose to help with your side effects. Switching from two weeks on/one week off to one week on/one week off did help my wife.
It is truly appalling it’s not the standard of care in the US! The FDA just revised the labeling for Xeloda in Dec. after we filed a third citizen petition. The revised label now at least includes an acknowledgment that oncologists “should consider testing for DPD prior to initiating…”. There is currently a lot of movement in the onco community towards pre-testing after a few successful lawsuits of families who lost loved ones after just one round of cape or 5FU. Dana Farber recently launched a program to pre-test and there are rumblings of others to follow. Please continue to encourage patients to get tested in these forums - it undoubtedly saves many patients from suffering (dose reduction) and potential fatality. test4dpd.org
I remember when I was sales for pfizer their was testing for those without enzymes to process for the drug camptostar for CRC… seems like such an easy thing to do.
I’m at Dana Farber and they required the pre-test before I could start cape. Hope everywhere will adopt this approach, a no-brainer to avoid needless loss of life 😔
I’ve been thinking about you all morning. I respect whatever decision you make but I wonder why you must go to NZ on the 21st. The timing just doesn’t seem to be working with your health needs. Can’t you re-schedule for later in the year? Chris
hi Chris- so kind of you to think about me. I love that and helps me to think why would I go at this in opportune health time.
I guess I am drawn to New Zealand like a moth to flame.
My hubby and I are both American but emigrated to nz in early 90s with a 2 and 4 year old. We all became citizens and have lived in two worlds ever since. It is hard loving toe places but many will understand and will have a summer place or move to another state for work.
I had the plan ti return to nz for most of this year, while I willed my health to stay stable.
I actually snuck away on a last min trip back to Nz by myself for the whole month of Sept… so that should have satisfied me… but that was winter and I L have wanted to float in the ocean and want to go back with my hubby to see our couple friends.
I have barely wrapped my head around the news of spread to vital organs and the new treatment( cape) at Xmas… this makes me think I am paradoxically in the best health that I am likely to be in… right now… I had 3 treatments in past year…. So they seem to be speeding up now…I think you will know what I mean. So there can’t be a later. I have had this trip planned for a year and gathered my BFFs and sister all from USA ti gi with me on a magical adventure. I feel like I can’t cancel just in case I have very bad health or a crisis… . This trip was Meant ti be once in a life time…for my sister although I have been all over nz she has never been and I talked her into it.
I did cancel the very special bike trip in the middle of this nz trip as my health or side effects are too uncertain and I didn’t want a potential health crisis to impact anyone else in our group cycle. … but still I want to go and participate as best I can with my sister and show her nz… I lived in Nz for over 20 years so I want to go say goodbye to my old BFFs most are friends from when my kids where in kindergarten and old neighbors etc. I have been wanting/ needing to go say goodbye as I I know I won’t be able to make this trek next year as it will be tough enough now.
I even considered having a living funeral but don’t want that kind of attention but I do want my old friends to know this is goodbye and not see you next year.
It is very tricky and I think many thrivers with MBC face this dilemma of having strong friendships in two places and then finally not having the energy or good health to devote to both sets of friends anymore… for me nz is my spiritual home but I moved back to USA, to get my husband resettled and near his family and college friends… in March we moved into our new house here in plymouth ma l.
and then I booked this trip- and persuaded my sister and friends to come to finally see what I always loved about nz. It is a bit risky and I recognize that most MBC women with a brand new treatment and all that is unfolding, wouldn’t be able to make this choice… notably because of health insurance. But luckily I can as a NZ citizen with national health insurance can get treatment from my lovely NZ oncologists and my GPs. So less risky but not risk free.
Thank you for your caring question as it helped me to examine what is driving me to go..
I understand perfectly and thank you for your answer as I completely understand now. I am Scottish and my friend from Bothwell and I write (email) every week.
In 2016 we spent 2 wonderful weeks in South Kensington London with 2 of our friends from Berkeley. It was part of my retirement gift from the company I worked for in California for over 20 years. My husband comes from Watford so he was able to visit with old school friends and we went somewhere every day like Kew Gardens, Harrods, Hyde park and the Tate. My sister and her husband flew over from Northern Ireland and we took a trip up the Thames to see the Greenwich clock. A trip that could not be repeated. I had hoped to take a final trip to Scotland but between Covid and the deterioration in my spine. It’s not on the horizon. We left California in 2017 and moved to Washington State as our son is a pilot in the US military and his wife left him while he was in Afghanistan We have helped with our 2 grandchildren who are half Philipinno and Scottish. They are now 12 and 15.
Anyway I understand the need to return to somewhere you love. I can feel the strength of your spirit and I wish you all the best. I followed your last pictures when you were there so I hope you have time to let us live vicariously through this current trip. Hugs and Bon Voyage Chris xx
chris I wish I had the purpose of grandkids who need me and miss me and need me to care for them. I doesn’t look like that will be in the cards for me. But I have 2 wonderful kids who will one day have kids.
I was on the low dose metronomic dosing of 3 x 500mg per day on Cape no days off. No side effects for me because of the low dose perhaps? It worked well for me for almost 2 years. My onc always starts on the lowest dosage to monitor side effects then increases the dose if the low dose has minimal side effects or none at all. I am on Afinitor now 10 mg but I started on 5 mg for 7 weeks before he upped the dose.
That is marvelous as 2 years seems ti be a long time and for you so well tolerated. I will read more about the metronomic dosing and ask my oncologist. Thanks for wiring ti me either that!
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