ideas, experiments, advices?
I wrote earlier about my mom. Now, I finally talked to an oncologist today. Well, no good news. First of all, it turned out that she was on Avastin and Folfiri (not Avastin and Folfox) as Avastin and Folfox is not registered here, same with Erbitux and folfox)...anyway, the doctor was really nice (and really honest)...he said there's no cure for her, she has maximum of 2 months left...however, he could start oxalipatin and folfiri as a treatment for 6 cycles that might help her to lessen her pains. (she is on morphine patches: 150)
I have a question regarding this:
1. are the side effects of this is pretty bad? I'm only asking this because mom already feels really bad, and I'm not sure that the side effects will be more tolerable than her condition right now without treatment...
Please, let me know ALL the side effects you guys experienced who had this treatment...I don't want her to suffer even more...because maybe she wouldn't have pain, but would feel like crap, than it is better to raise the morphine to kill her existing pain, but not having other side effects...also, anything I can do to her if she has stool with blood? Sorry, for asking so many questions, but I want to help her, and make her life more comfortable until she's around...>.<
And also, sorry for ruining the "feeling" here...I can read how people are all positive here, I don't mean to take away you guys' encouragement...remember, this is only one scenario, and every cancer is different, you guys might going to become NED soon! Please don't be mad at me for posting bad stuff...
Good luck to you all, and I wish you all the best!
Sophie
Comments
-
Mom
Sophie,
First off, no one will be mad that you posted "bad stuff". canzer is Bad Stuff! We try to be encouraging here, yes, but I myself have posted some discouraging things. It is impossible to keep things that positive and still keep it real. We are all still living in the real world.
Now, on to your mom. Sigh...you're right, discouraging news. If your mom is truely in her final months, did the doctor say why he is doing chemo? Does your mom want to continue with treatment? Does the doctor think it will prolong her life? It sounds as if it's time to consider quality of life. Your mom's final days should be spent LIVING. There is always time for dying. Maybe they can give her Avastin and Xeloda on a maintenance dose to slow progression (may extend her life?) and keep her pain free so she can enjoy life. Ask your mom what she wants. Let her decide how this should go. I have very specific criteria for continuing treatment and balancing quantity/quality of life, your mom may also.
Hugs,
Kimby0 -
Hello Kimby,kimby said:Mom
Sophie,
First off, no one will be mad that you posted "bad stuff". canzer is Bad Stuff! We try to be encouraging here, yes, but I myself have posted some discouraging things. It is impossible to keep things that positive and still keep it real. We are all still living in the real world.
Now, on to your mom. Sigh...you're right, discouraging news. If your mom is truely in her final months, did the doctor say why he is doing chemo? Does your mom want to continue with treatment? Does the doctor think it will prolong her life? It sounds as if it's time to consider quality of life. Your mom's final days should be spent LIVING. There is always time for dying. Maybe they can give her Avastin and Xeloda on a maintenance dose to slow progression (may extend her life?) and keep her pain free so she can enjoy life. Ask your mom what she wants. Let her decide how this should go. I have very specific criteria for continuing treatment and balancing quantity/quality of life, your mom may also.
Hugs,
Kimby
The doctor would give chemo in the hope that it may reduce the pain my mom is having, no other reasons. As of mom, she doesn't want to suffer from many side effects (such nausea, neuropathy, being weaker etc.). That's exactly why I ask what are the side effect of this Oxaloplatin (along with 5FU, and Leucovorin). They are not going to give Avastin that's for sure, and we don't have "Xeloda" available here. This Oxaloplatin is just for trying to reduce her pain level, and if works, could extend her life with another 3 months, but not more. However, if there are bad side effects, my mom does not want it then, as she is tired of feeling sick, and all she wants is to have a minimal pain (or a pain that is bearable) and to die "sooner the better". I believe what she also says, that just being under treatment but suffering till her last minute is just way too odd....then it's better if she lives as long as she lives with minimal pain and sickness. We can always raise the morphine if she has bad pains, but I (and her) don't think that the treatment would make her feel any better than currently....
Well, again, thank you for your response, and I will try to eliminate discouraging news...it's just hard to give up on someone I love....
Best to you, Kimby!
- Sophie0 -
Sophie
Sophie
We are glad to here from you on this site, you are a blessing to your mom. I agree with Kimby with what she said she always has good advice on here, I read your post earlier I am glad you got to talk to the onocologist. But there are many cases where the drs are way wrong about how long someone has, it is good to be prepared but dont give up hope yet. Nobody is mad at you for posting what you post we are here to help each other.
Actually I think it is harder for the caregiver then those of us who have this ca,
Please keep posting we do care you are free to vent here we understand
take care Sheri220 -
Sophiesharpy102 said:Hello Kimby,
The doctor would give chemo in the hope that it may reduce the pain my mom is having, no other reasons. As of mom, she doesn't want to suffer from many side effects (such nausea, neuropathy, being weaker etc.). That's exactly why I ask what are the side effect of this Oxaloplatin (along with 5FU, and Leucovorin). They are not going to give Avastin that's for sure, and we don't have "Xeloda" available here. This Oxaloplatin is just for trying to reduce her pain level, and if works, could extend her life with another 3 months, but not more. However, if there are bad side effects, my mom does not want it then, as she is tired of feeling sick, and all she wants is to have a minimal pain (or a pain that is bearable) and to die "sooner the better". I believe what she also says, that just being under treatment but suffering till her last minute is just way too odd....then it's better if she lives as long as she lives with minimal pain and sickness. We can always raise the morphine if she has bad pains, but I (and her) don't think that the treatment would make her feel any better than currently....
Well, again, thank you for your response, and I will try to eliminate discouraging news...it's just hard to give up on someone I love....
Best to you, Kimby!
- Sophie
Please don't try to eliminate discouraging news. It comes with the territory. Also, don't give up on someone you love. You don't have to give up.
The side effects of oxiliplatin are not great, but not everyone gets all of them and not everyone gets them really badly. Its hard to give the info you are looking for because we are all so different. Some people breeze through folfox (which is what you are talking about) and others (like me) have really bad reactions. My body just didn't tolerate it well and I ended up first reducing doses and then only finishing 10 of my scheduled 12 due to toxicity. I think everyone (or most everyone) has trouble with cold neuropathy. That usually means you can't touch, eat or drink anything cold. I had to drink/eat everything at room temperature or warmer and wear gloves to even get the milk out of the refrigerator. Otherwise, it's the usual stuff that she may or may not get: nausea, fatigue, diarehea, constipation, etc.
Whatever she decides, you are wonderful to be there for her. The decisions are tough, being there for your mother through all of this is tougher. You are a true angel.
Kimby0 -
hellosheri22 said:Sophie
Sophie
We are glad to here from you on this site, you are a blessing to your mom. I agree with Kimby with what she said she always has good advice on here, I read your post earlier I am glad you got to talk to the onocologist. But there are many cases where the drs are way wrong about how long someone has, it is good to be prepared but dont give up hope yet. Nobody is mad at you for posting what you post we are here to help each other.
Actually I think it is harder for the caregiver then those of us who have this ca,
Please keep posting we do care you are free to vent here we understand
take care Sheri22
sophie im so glad you found us here and hope mom is having a good day.i dont want to discourage you or mom but i am on oxy and 5fu. it is no joy ride and there are some bad side effects but can be controlled with medication.i just had treatment#4today and had my good days and bad.wondering if this is worth it.but with some encouraging words from my friends here and spending the day with my horse yesterday then i say YES ITS WORTH IT if it helps mom stay around longer then that is her dession.like i said they do have medication to help with the crapy side effects.hope this helps Godbless......johnnybegood0 -
thank youjohnnybegood said:hello
sophie im so glad you found us here and hope mom is having a good day.i dont want to discourage you or mom but i am on oxy and 5fu. it is no joy ride and there are some bad side effects but can be controlled with medication.i just had treatment#4today and had my good days and bad.wondering if this is worth it.but with some encouraging words from my friends here and spending the day with my horse yesterday then i say YES ITS WORTH IT if it helps mom stay around longer then that is her dession.like i said they do have medication to help with the crapy side effects.hope this helps Godbless......johnnybegood
@Sheri, Kimby, and Johnny,
Thank you for all of your replies...we'll see. First we have to have a CT and blood test and all that because that will also tell us (and the doc) if we actually should even consider the folfox option he mentioned. I don't even know how we'll get to the hospital for the tests. It is so bad always to ask people a favor, but this time I'll have to do it again and ask someone from friends who can drive and have car to take us to the hospital...I'm going to call the doctor tomorrow to ask for an appointment or something...I don't even know where to start...>.< Well, I will log in here sometimes and update you guys, I just really feel bad about whining because you are all so hopeful and I don't want to take away your hope just because our situation turned out like crap. (excuse my french!) And I just feel mad at our previous doctor as this doctor yesterday said that the previous doctor was wrong for continuing Avastin with folfiri after new metastasis and surgery. The previous doctor should've changed the chemo treatment as it became ineffective. Instead, we continued Avastin-folfiri and went through two surgeries with pretty bad metastasis....ok, I'm gonna stop complaining...I will try to control myself and my "comments".
Please take care everyone, and wish you all the best!0 -
Where do you live, Sharpy?sharpy102 said:thank you
@Sheri, Kimby, and Johnny,
Thank you for all of your replies...we'll see. First we have to have a CT and blood test and all that because that will also tell us (and the doc) if we actually should even consider the folfox option he mentioned. I don't even know how we'll get to the hospital for the tests. It is so bad always to ask people a favor, but this time I'll have to do it again and ask someone from friends who can drive and have car to take us to the hospital...I'm going to call the doctor tomorrow to ask for an appointment or something...I don't even know where to start...>.< Well, I will log in here sometimes and update you guys, I just really feel bad about whining because you are all so hopeful and I don't want to take away your hope just because our situation turned out like crap. (excuse my french!) And I just feel mad at our previous doctor as this doctor yesterday said that the previous doctor was wrong for continuing Avastin with folfiri after new metastasis and surgery. The previous doctor should've changed the chemo treatment as it became ineffective. Instead, we continued Avastin-folfiri and went through two surgeries with pretty bad metastasis....ok, I'm gonna stop complaining...I will try to control myself and my "comments".
Please take care everyone, and wish you all the best!
My family only has one car and we have a grown son who lives near me so he takes me to chemo. I drive myself to any simple appointment. Our church family has offered to drive me, as have the deacons.
Where are you located? I would be more than happy to help with transportation if you live near me. I'm in Villa Rica, Ga. I'd be willing to bet any number of our members would also volunteer if they live near you. We have to stick together in this battle!
Diane0 -
Not sure where you are butdianetavegia said:Where do you live, Sharpy?
My family only has one car and we have a grown son who lives near me so he takes me to chemo. I drive myself to any simple appointment. Our church family has offered to drive me, as have the deacons.
Where are you located? I would be more than happy to help with transportation if you live near me. I'm in Villa Rica, Ga. I'd be willing to bet any number of our members would also volunteer if they live near you. We have to stick together in this battle!
Diane
most cancer treatment centers that I know of have a plethora of help available for transportation and other things you may need, ask the receptionist at the docs office. If you were anywhere near the twin cities I could help.
I don't have any real advice on the folfox idea for your mom. I just completed my 10th treatment. Have done fairly well on it, have managed to get a bit of every side effect possible, but nothing I can't handle. The only one that has been constant is the cold, sore hands, but it's tolerable as long as I stay out of the freezer.
Don't be afraid of sounding off here, all of us have done that at one time or another. I'm sorry to hear the news about your mother, but she is blessed to have you on her side.0 -
oh...dianetavegia said:Where do you live, Sharpy?
My family only has one car and we have a grown son who lives near me so he takes me to chemo. I drive myself to any simple appointment. Our church family has offered to drive me, as have the deacons.
Where are you located? I would be more than happy to help with transportation if you live near me. I'm in Villa Rica, Ga. I'd be willing to bet any number of our members would also volunteer if they live near you. We have to stick together in this battle!
Diane
@Daientavegia
@daydreamer
You guys are sooooooooooooo nice...but there's a little problem about this...I'm not living in the United States....>.< And I'm from East Europe which is waaay off economically than West European countries, you guys have no idea. Thinking of reception desk with a receptionist? Thinking of transportation from different cancer centers? That sounds like a "dream"...we don't even have cancer centers, or anything...LOL But thank you though for your offer. I think what you guys throw away in the US that it's old and crappy...we would take them and use them happily.
We just had in the news a couple days ago how in the Netherlands a hospital decided to get rid of some hospital beds as they were already out of shape and about 20 years old...guess what? Our country accepted them, and proud of them. LOL So yes, things are waaay different here, and it is considered to be a well financed family where they have a car...>.<
Again, thank you though...I will check around here who has a car to help us out! But before I worry about this, I have to somehow have an appointment for the tests that are needed. Again, time is short, and to get a CT you have to wait at least a month here...mom has only 2 months to live, so I have to somehow speed up the process...
Take care everyone~0 -
Gosh, I'm sorrysharpy102 said:oh...
@Daientavegia
@daydreamer
You guys are sooooooooooooo nice...but there's a little problem about this...I'm not living in the United States....>.< And I'm from East Europe which is waaay off economically than West European countries, you guys have no idea. Thinking of reception desk with a receptionist? Thinking of transportation from different cancer centers? That sounds like a "dream"...we don't even have cancer centers, or anything...LOL But thank you though for your offer. I think what you guys throw away in the US that it's old and crappy...we would take them and use them happily. We just had in the news a couple days ago how in the Netherlands a hospital decided to get rid of some hospital beds as they were already out of shape and about 20 years old...guess what? Our country accepted them, and proud of them. LOL So yes, things are waaay different here, and it is considered to be a well financed family where they have a car...>.<
Again, thank you though...I will check around here who has a car to help us out! But before I worry about this, I have to somehow have an appointment for the tests that are needed. Again, time is short, and to get a CT you have to wait at least a month here...mom has only 2 months to live, so I have to somehow speed up the process...
Take care everyone~
I'm so sorry to hear of the substandard care. We who live in the U.S., Canada and England, etc. really are blessed to have so much available to us and so quickly available.
Sharpy, certainly English is your mother tongue!
Praying for your mom AND you during this time.
Diane0 -
Stay strong
Hi Sophie,
Your mom is lucky to have you for a daughter. My dad passed away from colon cancer 3 years before my diagnosis. He had chemo (5FU and leucovorin) weekly for a year, went into remission for over a year, then had a major recurrance with metastasis to his lungs and liver. He started chenmo again, in hopes of also decreasing his discomfort and slowing the process a bit. After just 2 treatments, he decided not to continue, as the side effects did not feel worth it at that point. He went on "comfort measures" with hospice, and his pain was well managed by the palliative care team. He passed away 3 months after the recurrance, still lucid and alert and ready to face the next passage!
Could your mom try the chemo, and if she develops any increased discomfort, choose to stop? Each person has such an individual response to chemo, it may be hard to know how she will tolerate it.
My heart goes out to you; it is so hard to watch the decline of a loved one, but that is also part of life. I will keep you both in my thoughts.
Wishing you comfort, Judy0 -
thank youjsabol said:Stay strong
Hi Sophie,
Your mom is lucky to have you for a daughter. My dad passed away from colon cancer 3 years before my diagnosis. He had chemo (5FU and leucovorin) weekly for a year, went into remission for over a year, then had a major recurrance with metastasis to his lungs and liver. He started chenmo again, in hopes of also decreasing his discomfort and slowing the process a bit. After just 2 treatments, he decided not to continue, as the side effects did not feel worth it at that point. He went on "comfort measures" with hospice, and his pain was well managed by the palliative care team. He passed away 3 months after the recurrance, still lucid and alert and ready to face the next passage!
Could your mom try the chemo, and if she develops any increased discomfort, choose to stop? Each person has such an individual response to chemo, it may be hard to know how she will tolerate it.
My heart goes out to you; it is so hard to watch the decline of a loved one, but that is also part of life. I will keep you both in my thoughts.
Wishing you comfort, Judy
@Diane, and Judy:
Thank you for your replies....I don't know what we'll do. We don't have much time to think about it, but we also cannot decide. I mean, it is my mom's choice, and I don't want to influence her in any way. I've never ever walked in her shoe, so I don't know how bad is the chemo, so I have no right to say anything in this. However, whatever she'll decide, I'll respect it, and support it. If it is "no", I will understand. If it is a "yes" I will understand that too. Next week, I'll try to arrange the tests that are required (CT, blood test...etc.) and until they're doing the tests, mom can still think about it. I will talk to some neighbours in our neighbouring street, maybe someone can drive us to the hospital and other locations...wherever we have to go for the tests.
Have a nice weekend to you all! It is unbelievable how it's already the end of April...sort of scares me...>.<0
Discussion Boards
- All Discussion Boards
- 6 CSN Information
- 6 Welcome to CSN
- 121.2K Cancer specific
- 2.8K Anal Cancer
- 440 Bladder Cancer
- 306 Bone Cancers
- 1.6K Brain Cancer
- 28.4K Breast Cancer
- 391 Childhood Cancers
- 27.9K Colorectal Cancer
- 4.6K Esophageal Cancer
- 1.2K Gynecological Cancers (other than ovarian and uterine)
- 12.9K Head and Neck Cancer
- 6.3K Kidney Cancer
- 666 Leukemia
- 789 Liver Cancer
- 4.1K Lung Cancer
- 5.1K Lymphoma (Hodgkin and Non-Hodgkin)
- 235 Multiple Myeloma
- 7.1K Ovarian Cancer
- 53 Pancreatic Cancer
- 486 Peritoneal Cancer
- 5.3K Prostate Cancer
- 1.2K Rare and Other Cancers
- 532 Sarcoma
- 718 Skin Cancer
- 647 Stomach Cancer
- 190 Testicular Cancer
- 1.5K Thyroid Cancer
- 5.8K Uterine/Endometrial Cancer
- 6.3K Lifestyle Discussion Boards