Need Help

luvmum · December 2010

Hello all,
I just join this site and I live in Hong Kong. I have many questions about colorectal cancer and hope to get some support here. My mum (70 years old) has diagnosed with colon cancer with liver metastases (7 spots on right side of the her liver) on 27th of October 2010. She had a surgery to cut the tumor in her colon on 29th October 2010 and has started her first treatment on 26th November 2010. She had oxaliplatin+xeloda and avastin. Unfortunately, her side effect from taking xeloda is so serious and the oncologist decided to stop it. Until now, I still don't know what is she going to have for her next treatment.
The oncologist here said it's very unlikely for her to cut the right side of her liver and he didn't explain to me what is CEA. I noticed her CEA raised from 64 (before surgery) to 89.9 (before 1st chemo treatment). When the doctor talked about CEA, he only said it's a kind of reference for them.
I'm extremely scared and feeling helpless. I live in fear and pain everyday.
luvmum

Lovekitties · December 2010

Welcome
How wonderful that you are here to try to help your mum.

I am unsure if anyone here has had experience with doctors and treatments in your part of the world. In the States we encourage folks to get second and third opinions just to make sure that they have a team that is the best they can get.

It will help to know what side effects your mum had to the xeloda. Some here may have had similar reaction and they may have some input on what can be done about that based on their experience.

Not doing surgery right away on the liver is not unusual. Many here have had treatments to shrink them before surgery can be done.

CEA is a marker which can be determined by a blood test which, for some but not all, can indicate if the cancer is in remission or potentially getting worse. Given that you know that she has exisiting mets to the liver, having it rise is not necessarily unexpected after surgery and before treatment.

I am certain that this is a difficult situation for you. You will find that the folks on this board are always willing to share information based on their experiences and are very caring as well.

Stay here with us and we will try to help you as best we can.

Marie who loves kitties

luvmum · December 2010

Lovekitties said:
Welcome
How wonderful that you are here to try to help your mum.

I am unsure if anyone here has had experience with doctors and treatments in your part of the world. In the States we encourage folks to get second and third opinions just to make sure that they have a team that is the best they can get.

It will help to know what side effects your mum had to the xeloda. Some here may have had similar reaction and they may have some input on what can be done about that based on their experience.

Not doing surgery right away on the liver is not unusual. Many here have had treatments to shrink them before surgery can be done.

CEA is a marker which can be determined by a blood test which, for some but not all, can indicate if the cancer is in remission or potentially getting worse. Given that you know that she has exisiting mets to the liver, having it rise is not necessarily unexpected after surgery and before treatment.

I am certain that this is a difficult situation for you. You will find that the folks on this board are always willing to share information based on their experiences and are very caring as well.

Stay here with us and we will try to help you as best we can.

Marie who loves kitties

Xeloda side effects
Hi Marie,

Thank you so much for your prompt reply. I feel a lot better to know there are people out there who are willing to help.

My mum stopped taking xeloda 3 days ago. She had diarrhea 7-9 times a day when she was taking xeloda, she still has 5-7 times now. Besides, her hands and feet turned dark grey and the skin is tough. She vomited a lot ... and today her lips turn dark red, swellen and has many ulcers like white spots inside her mouth. She keeps telling me her stomach hurts from taking so many pills.

She can hardly take any food except drinking water and a little bit of Ensure.

I put lip balm on her lips and give her some ulcer cream but looks like they don't help. I called the oncologist and he said as long as she can drink some water, that is fine. He didn't give me any solution for her lips and ulcer problems.

What can she eat or do now?

Dora luvmum

bruins1971 · December 2010

luvmum said:
Xeloda side effects
Hi Marie,

Thank you so much for your prompt reply. I feel a lot better to know there are people out there who are willing to help.

My mum stopped taking xeloda 3 days ago. She had diarrhea 7-9 times a day when she was taking xeloda, she still has 5-7 times now. Besides, her hands and feet turned dark grey and the skin is tough. She vomited a lot ... and today her lips turn dark red, swellen and has many ulcers like white spots inside her mouth. She keeps telling me her stomach hurts from taking so many pills.

She can hardly take any food except drinking water and a little bit of Ensure.

I put lip balm on her lips and give her some ulcer cream but looks like they don't help. I called the oncologist and he said as long as she can drink some water, that is fine. He didn't give me any solution for her lips and ulcer problems.

What can she eat or do now?

Dora luvmum

Got to stay hydrated for sure
Hey there Dora welcome to the group and of course I am sorry to hear about your Mum. Getting cancer can be very scary not only for the person who is sick but for loved ones who support the sick person. I know this for I have lived in both shoes as I watched my Mom battle breast cancer for 18 years before it finally took her from us. But we got an extra 18 years that the doctors didn't think we would get. Her cancer spread from her breast to the lungs and then to the pancreas and this over the course of 18 years. Now at 38 I am fighting stage 4 colon cancer but I know I will be here 18 years from now just like my mom. The best thing you can do for you mom is totally support her in any way you can. Beating cancer is so much easier when you have a support system. Like Marie said it's not unusual to have treatments before liver surgery to get the tumors to shrink. The did that with me and my tumors shrunk 40% in just 5 rounds of chemo. I only had two tumors one on each lobe of the liver. Keep your Mum drinking as much as possible water, water and yet more water... I know sometimes drinking water during chemo is tough but it's super important as it will help flush out that chemo. I would certainly also get a 2nd or 3rd opinion as I did before I started treatments. I hope your mom gets to feeling better soon and Merry Christmas from a friend in Dallas, Texas USA....

Bobby

Lovekitties · December 2010

luvmum said:
Xeloda side effects
Hi Marie,

Thank you so much for your prompt reply. I feel a lot better to know there are people out there who are willing to help.

My mum stopped taking xeloda 3 days ago. She had diarrhea 7-9 times a day when she was taking xeloda, she still has 5-7 times now. Besides, her hands and feet turned dark grey and the skin is tough. She vomited a lot ... and today her lips turn dark red, swellen and has many ulcers like white spots inside her mouth. She keeps telling me her stomach hurts from taking so many pills.

She can hardly take any food except drinking water and a little bit of Ensure.

I put lip balm on her lips and give her some ulcer cream but looks like they don't help. I called the oncologist and he said as long as she can drink some water, that is fine. He didn't give me any solution for her lips and ulcer problems.

What can she eat or do now?

Dora luvmum

Hi Dora
I have no personal experience with chemo, but I have heard here that some folks have used what they call 'miracle mouthwash' for mouth sores. Apparently it is by perscription.

Try to have your mum do little tiny sips instead of drinking lots at one time. Make sure she keep it up as best she can as it will help remove the toxins from her system.

Does your mum have a regular general practice doctor? If so he may be able to help with perscription meds for the mouth problems.

Others here have also recommended the BRAT diet for diarrhea. B = bananas R = white rice A = applesauce T = tea. She doesn't have to do all at once but these things may help.

Hope she starts improving soon. Take care.

Marie who loves kitties

AnneCan · December 2010

Welcome
I am so sorry you have a need to be here, but am glad you found us. I think at least one other member of the forum lives in Hong Kong as well. I live in Canada, + there are others who live in many countries around the world. I am glad your mother has such a caring daughter. Keeping hydrated is really important. I have become dehydrated 3X where I have meeded IV hydration. I am actually on IV saline solution right now. Try to take things one day at a time; I know this is difficult. Remember to throw hope in there; fear + pain are normal but hope helps us a lot. I hope you find out the new treatment plan soon.

pepebcn · December 2010

AnneCan said:
Welcome
I am so sorry you have a need to be here, but am glad you found us. I think at least one other member of the forum lives in Hong Kong as well. I live in Canada, + there are others who live in many countries around the world. I am glad your mother has such a caring daughter. Keeping hydrated is really important. I have become dehydrated 3X where I have meeded IV hydration. I am actually on IV saline solution right now. Try to take things one day at a time; I know this is difficult. Remember to throw hope in there; fear + pain are normal but hope helps us a lot. I hope you find out the new treatment plan soon.

Hi Dora welcome to the board.
Of all the sympthoms you are describing the only one you may concern is heavy diarrhea ,that can become in a grave dehydratation , all others like
grey color hand , mouth sores and others are minor sympthoms and very normal while in chemo.So keep her well hydrated.
For mouth sores the best I found after try lots of things is the most simple; 2 inches of warm water and a coffee spoon of bicarbonate!.
Keep it couple of minutes in your mouth and it works for sure!.
Hugs!

luvmum · December 2010

bruins1971 said:
Got to stay hydrated for sure
Hey there Dora welcome to the group and of course I am sorry to hear about your Mum. Getting cancer can be very scary not only for the person who is sick but for loved ones who support the sick person. I know this for I have lived in both shoes as I watched my Mom battle breast cancer for 18 years before it finally took her from us. But we got an extra 18 years that the doctors didn't think we would get. Her cancer spread from her breast to the lungs and then to the pancreas and this over the course of 18 years. Now at 38 I am fighting stage 4 colon cancer but I know I will be here 18 years from now just like my mom. The best thing you can do for you mom is totally support her in any way you can. Beating cancer is so much easier when you have a support system. Like Marie said it's not unusual to have treatments before liver surgery to get the tumors to shrink. The did that with me and my tumors shrunk 40% in just 5 rounds of chemo. I only had two tumors one on each lobe of the liver. Keep your Mum drinking as much as possible water, water and yet more water... I know sometimes drinking water during chemo is tough but it's super important as it will help flush out that chemo. I would certainly also get a 2nd or 3rd opinion as I did before I started treatments. I hope your mom gets to feeling better soon and Merry Christmas from a friend in Dallas, Texas USA....

Bobby

Thank you very much!
Hi Bobby,

Thank you very much for your advice. I have been trying to get her to drink as much water as possible in the last 24 hours.

I talked to a couple of doctors (who are not oncologist), and one of them is also fighting an unusual type of cancer. They all said colon cancer stage 4 do not have many alternatives in terms of treatment. They will usually use one kind of the target treatment, depends on your K-RAS results. As my mum's K-RAS is mutated, therefore she can only use Avastin. To being the treatment, they usually use xeloda+oxaliplatin to go with Avastin.

Do you mind if I ask what kind of chemo treatment did you have? My mum will have her 2nd treatment next Fri and I still don't know what is she going to use as the doctor said she cannot take xeloda anymore.

Thanks again for your valuable sharing and I wish you have a Merry Christmas with your family too.
Dora

luvmum · December 2010

pepebcn said:
Hi Dora welcome to the board.
Of all the sympthoms you are describing the only one you may concern is heavy diarrhea ,that can become in a grave dehydratation , all others like
grey color hand , mouth sores and others are minor sympthoms and very normal while in chemo.So keep her well hydrated.
For mouth sores the best I found after try lots of things is the most simple; 2 inches of warm water and a coffee spoon of bicarbonate!.
Keep it couple of minutes in your mouth and it works for sure!.
Hugs!

warm water + bicarbonate works!
Hi pepebcn,

Thanks a lot for your tips. I use some cotton puff to soak into the warm water + bicarbonate to put on to her lips, it works. At least it's not as painful as before.

Thanks a lot!
Dora

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