All about Xeloda
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We got very bad news when they did exploratory surgery to look at her bowel obstruction. It turns out that a tumor is wrapped around an upper area of her small intestine, and the whole of the intestine is peppered with small tumors. They can't do a re-section of the intestine, as the small cancer all over prevents making a proper re-connection. The obstruction is too high for a colostomy bag to work, as no nutrients would be absorbed by the very short area of open intestine. They say they can't put in a feeding tube, as her ascites would prevent healing of the surgical wound. They say the area of the tumor moves too much to do radiation treatment. I am not confident of a surgeon who is not an oncologist, giving oncology advice. However, they did bring in some sort of oncology person (not sure if she was a Doctor) who told us no treatment is possible and we just have to wait for her to die.
So, she is currently on TPN (total parenteral nutrition) which is intervenous. They say no cancer treatment is possible for someone who can't eat, and Tpn would not support any sort of treatment, not even an antihormonal like fulvestrant.
So, they have told her she has 2 days to 2 weeks to live. She has a private room, family is gathering around her, and we are having to say our goodbye's. We are all stunned, as a CT scan and MRI earlier in the week gave us no indiction of any problem. Cancer was pronounced to be relatively stable. All I can say is we are stunned. Stable to death sentence in the same week.
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@husband11 …. I am so very sorry! I guess that an abdominal chemo-wash won't work? You, your wife and your family will be in my prayers.
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husband11, I’m so very sorry to hear the news. My heart goes out to you and your wife and family dealing with such difficult news. Holding all of you in my thoughts at this time.
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husband 11 I'm at a loss for finding the right words except that I'm very sorry to hear all of this. I will pray for strength for you and your family ,also peace for your wife. She is so very lucky to have you as her advocate and her rock through all of this. Prayers and hugs your way.
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Husband11 - I rarely look at this thread, but just happened to this evening. I just want you and your wife to know how very, very sorry I am about your situation. I cried when I read your narrative of what the doctors told you. Please know that so many of us are thinking of you and your family right now. My sincerest sympathies to you all.
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Thank you all. Unfortunately we still have another fight on our hands. My wife says she is feeling fantastic, hasn't felt so good in over a year. We went for two long walks. She is enjoying visits with our daughters and grandchildren. The Doctor (who tells us his wife died of breast cancer) wants to withdraw the TPN (IV food) because he says the evidence is that it doesn't extend lives of cancer patients. She can't eat, because of the intestinal blockage, so the TPN is essential. My wife and I are completely against this withdrawal of care, as it presupposes that they know how long it will take the cancer to kill her. We know that without food she will die after a finite amount of time. We don't know the rate of progression of the cancer, that doesn't even show up on scans. I have to fight this. Neither of us want to prolong the process of dying, if she has poor quality of life, but the current state of her quality of life is, in her own words, "fantastic, no cough anymore, sleeping well.". We went for two long walks, nothing she was able to do previously, and no coughing fit. It seems the dexamethasone has treated her biggest problem, the lung ailment. I intend to support her wishes to be kept alive, as long as she has quality of life. The Doctor unfortunately disagrees.
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@husband11 I’m so sorry to hear this news about your wife.
I think you need to stick to your guns about this, to some extent. It’s really all about quality of life, right? Especially if she’s felt so poorly for a while, why not continue the TPN while she’s feeling good? I can’t imagine they would discontinue TPN without your wife’s consent here in Canada. Im hoping the doctor was just ‘having the conversation’ to see where you guys were at. Wishing you all the best in this difficult time.
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husband11 Wow I can't believe what I just read and I totally agree with you! Your and you wife's wishes need to be respected. What ever amount of life there may be needs to be lived and enjoyed with family. To me it would be different if she was suffering but being she is feeling well I agree with you on this. Thinking of you and your family and I will continue to remember all of you in my daily prayers.
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This is so upsetting. Is another opinion in order? As I suggested before, what about an abdominal chemo wash? I have known patients who had good results with those.
And a chemo for the colon tumors. She certainly needs nutrition!
I hope that you two can fight this!
Praying here.
Denise
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Abdominal chemo wash? I will ask the Oncologist about that today when we see her.
I am angry because she is doing so well now. Third day that we went for a long walk. She even did squats in the hallway. Not out of breath or coughing. Best she has felt in over a year. They want to write her off as they can see in their crystal ball that she has no future. I am afraid they are creating a self fulfilling prophecy.
I had her sign a directive, stating that she does not consent to the withdrawal of TPN (the IV nutrition) and I gave it to the head nurse, who put it on her chart. The Doc's come every day and tell us to give up. Today her Oncologist will see us, and I'm certain she will say the same thing as she has never been one to offer hope. Frankly, I am disgusted by the attitude of the new generation of Doctors.
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Sounds good, husband. Fight this! I don't understand the attitude of the "doctors". I never asked my onc about my longevity, even when I statistically only had a year to live in 2004.
Denise
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husband11 Standing with you on this! I believe in a higher being and when it is time we will ALL be called home when it's our time. Easy for them to throw the towel in because it's not their own life. I know they are all trained in the science but sometimes there is more to the story.
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Hi everybody, I'm on my third xeloda cycle, and I'm having a bit of HFS. What the best cream for it? I'm currently using 30% urea cream, but it seem not doing much. (Or may be whithout I will be even worst...? Not sure). Any suggestions? I read Dicloreum...isn't a medicine sort of? May be too strong? Anything natural woth trying?
Thank you and off course best wishes to all of us!
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@amel_83 ….did I warn you about eating fewer foods with high folic acid? That is what causes the HFS for most of us. I can't use Urea since it is an exfoliant, so it made my feet raw.
At night, I use Aquaphor with silicone socks and food service gloves . During the day, Aquaphor and cotton socks. And I use Profoot Heel Rescue foot cream on my hands.
I have been on Xeloda for almost 6 years and since I eat folic acid foods only in moderation, my hands and feet are only dry with no pain or redness.
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@amel_83 As Denny said I also watch my folates in my diet. I have tried everything out there I have had recent success with Diclofenac gel ( Voltaren). I do still alternate in Aquaphor and Bag Balm at times also. My hands and feet have come along way, they were awful when I was on 14/7 regimen. Good luck you may have to see what works best for you but definitely watch those folates!
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My wife liked cerave cream. It really forms a strong barrier. We tried the voltaran, and she wasn't a big fan of it.
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I reduced my intake of folic acid foods as recommended. Tried several different lotions and settled on alternating between Original Udder Balm, Bag Balm 20% Urea, Eucerine 10% Urea, and TriDerma Pressure Sore Relief (Amazon). I used Voltaren just a couple of times. I switched to cushioned Skechers which I think helped. Switching to 7on/7off schedule probably did the most to reduce the severity of the H/F side effect both for feet and hands/fingers. I always had some redness and increased numbness, but not much peeling and blistering.
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I should have stock in Aquaphor since that Is about all that I use. I like Profoot Heel Rescue on my hand during the day.
I am in PA and now that my yardwork is over, my hands should get better. But my hands and feet are just dry now.
I also swear by Skechers when out, and just wear socks in my house, which is mostly carpeted.
I will have a CT in a month to see if the suspicious spot in my lung is a tumor. And in that case, I might be on another treatment.
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@denny123 @husband11 @weninwi @cookie54
Thank you everyone! I will try to reduce folate and the creams suggested, and see which one will work better for me. All the comments was very helpful as the oncologist didn't really told me much, only to buy urea cream, which didn't work!
And do you have to reduce folate slso in the week off, or just the days that you take xeloda?
And best wishes to Denny for your scan and husband for you wife, and much love to everyone, I really find mysrlf better here than with my oncologist
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@amel_83 ….Thanks! Actually, the Xeloda works on our off-week. So you really should cut back on the folic foods as long as you are on Xeloda. There are maybe 10% of women for whom folic acid isn't a problem. I just buy iceberg lettuce for my salads, although I do miss the dark leafy greens.
Urea is an exfoliant, so it makes our skin peel off. That made my feet much worse. My onc told me to use urea, clobetasol and something else. But those made my feet really bad. Aquaphor is what I use constantly for the dryness.
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Hi everybody
Im on my 4 cycle of Xeloda.
I know side effects are a bit different from person to person.
I’m just wondering if anybody had hair fall, or if anybody keep all their hair.
I hope mine will not fell out! I know it is not important to care about, off course mostly i wish the medicine to work…but just curious of other people experience. Also I have a bit of painful cuts on the tips of my fingers.
The blood test was really good though…all my markers went down to normal, so I’m happy.
And...any xeloda success new stories?
Thank you and best wishes everyone, have a nice week!
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@amel_83 Hey there glad your markers down, that's great! I still have my hair although I do have some thinning. I also get cracks/cuts off and on sometimes no matter how many preventative measures I use.Oh those cuts can be painful and annoying! Sounds like overall your doing pretty good and yes I hope you have a long run with Xeloda too.
May you have a good week also!
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@amel_83 I have been on Xeloda for almost 6 years and my hair has stayed the same, with no thinning. I have found that my hands and feet are tons better if I eat foods that are high in folic acid ONLY in moderation.
Folic Acid causes infections for most of us. I use Aquaphor night and day on my hands and feet.
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Hi everybody
What dosage and regiment of xeloda are you on? Just curious....i read from a recent study that 7/7 is better and just as effective...or 2000 mg x m² rathervthan 2500. They potentialy be just as effective, with less toxicity.
Here in Italy they don't consider it...what about you?
I'm at 3500 mg per day and i weight 45 kg (2500 mg x m²)
Did everybody started with full dosage?
Thank you and best wishes! Hope your weekend was good!
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