I am new here and scared to death
My mom just turned 58 years old. She had a liver enzyme test done in Nov. 2010 and this showed elevated liver enzymes. She then had a CT scan which showed mets to liver (3 large tumours) and a colonoscopy. On Jan. 7 2011, she was diagnosed with colon cancer following the results of the colonoscopy. She had a colon resection on Jan. 25, 2011 and during the surgery, the surgeon nicked her spleen and could not get it to stop hemorrhaging so he ended up having to remove it. We were hopeful after the surgery as the surgeon told us that the surrounding organs looked clean and we all felt that she would fight this and possibly have a liver resection, which is what I was going to push for. Today was our first appointment with the oncologist. He told us that surgery is not an option and that there is basically no hope. He told us that there appears to be extensive lymph involovement around the aorta, something that neither the surgeon nor our family doctor had told us and that the only option is to do aggresive chemotherapy to try and prolong her life. He said that they do not do surgery in these cases even though the tumours are isolated to the right lobe of the liver. We are still going to see the liver surgeon next week to get a second opinion but I am completely devastated. I cannot think of anything other than I am going to lose my mom and she is so important to me. I have two small children and am so upset at the idea that she won't be around to see them grow. I cannot understand how my mom's cancer is so far progressed and yet she had no symptoms. She is someone who was always good about going to the doctor and getting her check ups and tests. I feel like I can't function. I am a religious person and have been praying and going to church but I am so afraid at how this is completely out of my hands. I have looked at some threads which talk about juicing and we got her a high end juicer but the colon surgery has left her feeling nauseous and without an appetite so she says she cannot tolerate juice right now. She eats small meals throughout the day but is still fatigued from surgery and has lost about 10 lbs since the operation. Any feedback or support you can provide is most welcomed. Thank you.
Comments
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Dear Tina
Your mom is not that far out from her surgery and is still recovering. It takes a while to get back. Sounds like she is doing what I did, small meals but often.
If it is possible I would suggest you get a second oncologist's opinion. While her situation may not be the best, I really do hate when any say "there is no hope".
There are lots of folks here who have out lived their "expiration date" and are on maintenance chemo until a cure or other procedures can be found, and they are doing well.
Hang on to the juicer, as your mom will begin to feel beter with each day. What she needs most is to have support and encouragement not only from you and the family but also from her team of doctors. If you share your general location (country, state, major city near by) I am sure there is likely someone who may offer you some suggestions for referrals.
Keep up your spirits and your mom's. The fight is not over. It has just begun.
Hugs,
Marie who loves kitties0 -
Thank you for your reply. WeLovekitties said:Dear Tina
Your mom is not that far out from her surgery and is still recovering. It takes a while to get back. Sounds like she is doing what I did, small meals but often.
If it is possible I would suggest you get a second oncologist's opinion. While her situation may not be the best, I really do hate when any say "there is no hope".
There are lots of folks here who have out lived their "expiration date" and are on maintenance chemo until a cure or other procedures can be found, and they are doing well.
Hang on to the juicer, as your mom will begin to feel beter with each day. What she needs most is to have support and encouragement not only from you and the family but also from her team of doctors. If you share your general location (country, state, major city near by) I am sure there is likely someone who may offer you some suggestions for referrals.
Keep up your spirits and your mom's. The fight is not over. It has just begun.
Hugs,
Marie who loves kitties
Thank you for your reply. We are in Vancouver, BC, Canada. We will be going to the liver surgeon next week and I will ask what his opinion on a liver resection is. I will also request an opinion from a second oncologist. The oncologist we saw today did not actually say "there is no hope". He said that in these cases, the cancer is too advanced for a resection of the liver and the hope lies in that the chemotherapy will be able to stop the growth of the cancer. But he also told us that her prognosis is not good and that her expected survival time is low. I am just feeling very discouraged, to be completely honest.
My mom is a very tough lady but I have seen her completely crumble into depression and helplessness since her diagnosis. She was more positive after the colon resection but has been feeling pretty horrible and weak the last few days and then this news today just sent her reeling. I have read from so many that attitude is the key but every time I mention an idea for an alternative therapy or something, she says that it's too late for all that. I am so depressed watching her lose her hope. She says she will fight and will have the aggressive chemo so at least that is a positive. I also got her to cut out all sugar as I read it feeds cancer cells.
She is such a healthy lady which is why this is so hard to believe. She has never smoked, she does not drink and she is a healthy eater. I am so dumbfounded by this but I can see from this site that this disease does not discriminate. The toughest part is hearing that the cancer is very advanced. This does not mean that I will lose hope because I believe only God has the power to decide one's fate.
Thanks again for your support Marie who loves kitties. I need all the support I can get right now.0 -
Hang in there
I know this is scary business for you. We've all been there, either as the patients or as caregivers. You obviously care so much about your mom. The best thing to do is listen to her and let her vent if she wants and just let her know how much you love her.
*hugs*
Gail0 -
Welcome Tina C
I am sorry you need to be here, but you have come to a great support network. I think your Mom might need a little time to absorb so much information. I have not had surgery for either of my two colorectal tumours or the spots on my liver. I have been on chemo since Sept/09; before that I had radiation with chemo. I am a fellow Canadian, living just outside Toronto. I think it is good you are seeing a liver surgeon. One thing to remember is there are people who have been told "no liver surgery" but after chemo or other treatments are able to have the surgery later.0 -
hold on, there is hope
I know how scary this is; you just sort of shut down when you hear you have cancer. And it doesn't help if your oncology team doesn't seem to be offering much hope. There's a lot to absorb right now. Definitely you will see on this board there are MANY who were told they had little hope, no hope for surgery, and time and treatment changed all that. Every day you wake up is another day of hope. Gather all your resources for spiritual/emotional support as well as medical support. I have been battling the beast since 2004, stage IV since 2006. It's not fun, but it's doable. None of us know how much time we have left, we merely do the best we can with what we are given. I'm glad you are there for you mother, supporting her and looking for ways you can help. Know that she needs you and that you are important. Do what you can, even if it's just listen when she vents. She will come around, once she's had time to adjust to the news.
mary0 -
Welcome to the board!TinaC said:Thank you for your reply. We
Thank you for your reply. We are in Vancouver, BC, Canada. We will be going to the liver surgeon next week and I will ask what his opinion on a liver resection is. I will also request an opinion from a second oncologist. The oncologist we saw today did not actually say "there is no hope". He said that in these cases, the cancer is too advanced for a resection of the liver and the hope lies in that the chemotherapy will be able to stop the growth of the cancer. But he also told us that her prognosis is not good and that her expected survival time is low. I am just feeling very discouraged, to be completely honest.
My mom is a very tough lady but I have seen her completely crumble into depression and helplessness since her diagnosis. She was more positive after the colon resection but has been feeling pretty horrible and weak the last few days and then this news today just sent her reeling. I have read from so many that attitude is the key but every time I mention an idea for an alternative therapy or something, she says that it's too late for all that. I am so depressed watching her lose her hope. She says she will fight and will have the aggressive chemo so at least that is a positive. I also got her to cut out all sugar as I read it feeds cancer cells.
She is such a healthy lady which is why this is so hard to believe. She has never smoked, she does not drink and she is a healthy eater. I am so dumbfounded by this but I can see from this site that this disease does not discriminate. The toughest part is hearing that the cancer is very advanced. This does not mean that I will lose hope because I believe only God has the power to decide one's fate.
Thanks again for your support Marie who loves kitties. I need all the support I can get right now.
Hi Tina,
First of all...your mom made it through the surgery as well, she had more taken out than she thought she was, going into the surgery. She had her spleen removed as well! Abdominal surgery is a super major surgery and as such, no matter how well we think we came through it, it takes considerable time to heal from the inside out. On top of that, to be given the diagnosis "You have cancer" and "the cancer has spread to the liver and lymph nodes"... just reading those words are enough to send anyone into shock. So, you have to give your mom some slack here if she is not responding with a gung ho, let's go into battle and fight this beast attitude. That will come once she has healed up some and she's gotten some of her strength back. Once her physical strength starts returning and she starts getting information about what the plan is going to be for her treatments... she will get her fighting spirit.
You say you are in Vancouver so I am going to assume that the oncologist you met with is at the BC Cancer Agency on 10th. The staff there are wonderful and you are going to find that all their various teams, from surgeons, to radiologists, to specialists, to oncologisits, to the chemo nurses... they are all educated on the latest and greatest, which doesn't hurt since the huge Cancer Research facility is there on 10th Ave. as well, along with VGH and UBC. So rest easy, that she is going to be in good hands.
Now, another thing I must warn you... don't go throwing tidbits of do's and don't's at her because you read something and now insist she does or doesn't do it. For every tidbit you read, there will be 3 that dispute it. The first thing that caught my eye was when you said you got her to cut out all sugar as you "read it feeds cancer sells". There is a partial truth to that, but it is glucose that feeds cancer cells, not sugar itself. EVERYTHING you put in your mouth, from grains to protein, from carbs to whatever will turn to glucose as glucose is what nourishes cells as well. So, if you want her to stop eating that which cells survive on, then you are going to have to tell her to stop eating EVERYTHING because it all turns to glucose. And, if you go out of your way to starve the cancer cells, then just remember that same process is starving the healthy cells as well, so other than making your mom miserable, you really haven't accomplished a whole lot.
Now, having said that, I think we all can agree that processed sugar is not good for any of us, with or without cancer. It really doesn't have any healthy benefits, other than it can make a boring food that much more palatable. So everyone should cut back on processed sugar since there's no need for it in anyone's diet... but if one were to try an follow a perfectly healthy diet of fiber/grains/protein/healthy carbs, and not be able to add anything to it to make meals appealing, I can bet dollars to donuts very few people would be able to stick to it.
I certainly have nothing against juicing. To take those fresh fruits and veggies and juice them into a glass or two... rather than be eating veggies all day long just to get the right amount in you... hey, juicing is the way to go. Then you know you are getting fibre, minerals, vitamins and nutrients right from the source. But with her being so soon out of surgery, now is not the time for that. As a matter of fact, I would be very surprised if her surgeon or the nurses at the hospital didn't tell her she has to be on a very bland, low fibre diet for 6-8 weeks after her surgery while her intestines recover.
There's a long road ahead... and she will probably start on one kind of chemo and if that doesn't work, they'll change her to another. Of course, there are a lot here who might recommend either going on alternative treatments instead of chemo, or a combination of alternative treatments and chemo. I haven't gotten to that point myself... we all have to pick and choose what we think will work best for us. I am doing the chemo treatments because I agree that cancer can be aggressive and nasty, so one has to fight back just as aggressive and nasty. That's not to say alternative treatments won't work (I have no knowledge for or against) but at this point in time, it's not something I believe will work for me.
Your mom is lucky to have you in her court... and I'm sure having her grandkids around will always give her that extra boost to fight the good fight. When you hear the words "the prognosis isn't good" or "this is stage IV, which means there isn't necessarily a cure"... they will make your blood run cold. But you just have to take a deep breath and realize no one is going to be going anywhere until it's their time to go. Many in this forum have conquered the beast, only for it to have come back, only to have conquered it again... and again... and again. For the majority of us, we just have to admit that we have the stinkin' disease but with the right treatments that work for us, we all can live with cancer for many, many many years. Not everyone has to die from cancer, but unfortunately I think the stats are 1 out of 4 will be living with cancer.
So, Tina... deep breath. You and the whole family have had a shock... but things will settle down once you get a plan... and be rest assured, you are probably going to end up with a fabulous medical/oncological team
Cheryl0 -
chemo
Hi Tina,
Sorry you have to be here under these circumstances. When my mom was first diagnosed with cancer at 52 I was devastated - and going through all the tests and second opinions feels like it's taking so much time! I'll be praying for you and your family. The chemo is tough but the thing she'll need most is emotional support right now. Lots of people start out with very little hope but chemo ends up making surgery possible eventually. The depression is hard but her attitude is going to be a big factor going into this!! Many blessings for you and her, and keep us updated!
mallory0 -
Tina
First I'd like to say hello. And yes, cancer is a scary thing, very scary at first, I don't think I'm near as scared as I was for a couple months after being told I had Stage IV Terminal cancer with 4 to 6 months to live. (4 without chemo/6 with chemo). They offered me home hospice when I was in the hospital, I turned them down, figured I'd go with the chemo thing. They told me I would never be operable. This was all in February of 2010.
It is now February 2011, I'm still here (I'll be 52 next month) I also had my surgery (the one I would never qualify for) December 20, 2010. I plan on being around awhile.
See if your Mom will tolerate any of these such as SlimFast, Boost, ensure, or just make nice milkshakes for her. Those help fatten one up and with the exception of the milkshakes (which are my personal favorites)have extra nutrition values in them (milk and ice cream by the way are also good nutrition wise, they just don't have the extra in them)along with her small meals or in between them if she's worried about her weight, I think that would help.
I'm sure the nicked spleen didn't help any either.
And I'm glad you're still going to see the liver surgeon (I'm assuming he's an oncologist liver surgeon)for more opinion on the matter.
Take care and please feel free to ask away, we don't have exact answers, just our own experiences to help you draw from. And if you read CherylHutch's up above, you'll see her advise is EXCELLENT!!!
Wishing the best for your Mom,
Winter Marie0 -
I am so afraid at how this is completely out of my hands
Hi tina,
You can help alot, just read all the amazing stories from the survivors.
They are all remarkable people. You can do many positive things to help your
mum and I guess coming to the place of caring and sharing is just one.
You'll just have to keep learning step by step each day. I have been fighting everyday
for 8 months and I either learn something, or meet someone and read something here thats really inspiring and hopeful.
Just keep on loving you mum, the diagnosis is a really scary phase to go through, she's is lucky to have you.
Goodluck finding a great oncologist who can give you some hope.
Pete0 -
Thank you so much for yourCherylHutch said:Welcome to the board!
Hi Tina,
First of all...your mom made it through the surgery as well, she had more taken out than she thought she was, going into the surgery. She had her spleen removed as well! Abdominal surgery is a super major surgery and as such, no matter how well we think we came through it, it takes considerable time to heal from the inside out. On top of that, to be given the diagnosis "You have cancer" and "the cancer has spread to the liver and lymph nodes"... just reading those words are enough to send anyone into shock. So, you have to give your mom some slack here if she is not responding with a gung ho, let's go into battle and fight this beast attitude. That will come once she has healed up some and she's gotten some of her strength back. Once her physical strength starts returning and she starts getting information about what the plan is going to be for her treatments... she will get her fighting spirit.
You say you are in Vancouver so I am going to assume that the oncologist you met with is at the BC Cancer Agency on 10th. The staff there are wonderful and you are going to find that all their various teams, from surgeons, to radiologists, to specialists, to oncologisits, to the chemo nurses... they are all educated on the latest and greatest, which doesn't hurt since the huge Cancer Research facility is there on 10th Ave. as well, along with VGH and UBC. So rest easy, that she is going to be in good hands.
Now, another thing I must warn you... don't go throwing tidbits of do's and don't's at her because you read something and now insist she does or doesn't do it. For every tidbit you read, there will be 3 that dispute it. The first thing that caught my eye was when you said you got her to cut out all sugar as you "read it feeds cancer sells". There is a partial truth to that, but it is glucose that feeds cancer cells, not sugar itself. EVERYTHING you put in your mouth, from grains to protein, from carbs to whatever will turn to glucose as glucose is what nourishes cells as well. So, if you want her to stop eating that which cells survive on, then you are going to have to tell her to stop eating EVERYTHING because it all turns to glucose. And, if you go out of your way to starve the cancer cells, then just remember that same process is starving the healthy cells as well, so other than making your mom miserable, you really haven't accomplished a whole lot.
Now, having said that, I think we all can agree that processed sugar is not good for any of us, with or without cancer. It really doesn't have any healthy benefits, other than it can make a boring food that much more palatable. So everyone should cut back on processed sugar since there's no need for it in anyone's diet... but if one were to try an follow a perfectly healthy diet of fiber/grains/protein/healthy carbs, and not be able to add anything to it to make meals appealing, I can bet dollars to donuts very few people would be able to stick to it.
I certainly have nothing against juicing. To take those fresh fruits and veggies and juice them into a glass or two... rather than be eating veggies all day long just to get the right amount in you... hey, juicing is the way to go. Then you know you are getting fibre, minerals, vitamins and nutrients right from the source. But with her being so soon out of surgery, now is not the time for that. As a matter of fact, I would be very surprised if her surgeon or the nurses at the hospital didn't tell her she has to be on a very bland, low fibre diet for 6-8 weeks after her surgery while her intestines recover.
There's a long road ahead... and she will probably start on one kind of chemo and if that doesn't work, they'll change her to another. Of course, there are a lot here who might recommend either going on alternative treatments instead of chemo, or a combination of alternative treatments and chemo. I haven't gotten to that point myself... we all have to pick and choose what we think will work best for us. I am doing the chemo treatments because I agree that cancer can be aggressive and nasty, so one has to fight back just as aggressive and nasty. That's not to say alternative treatments won't work (I have no knowledge for or against) but at this point in time, it's not something I believe will work for me.
Your mom is lucky to have you in her court... and I'm sure having her grandkids around will always give her that extra boost to fight the good fight. When you hear the words "the prognosis isn't good" or "this is stage IV, which means there isn't necessarily a cure"... they will make your blood run cold. But you just have to take a deep breath and realize no one is going to be going anywhere until it's their time to go. Many in this forum have conquered the beast, only for it to have come back, only to have conquered it again... and again... and again. For the majority of us, we just have to admit that we have the stinkin' disease but with the right treatments that work for us, we all can live with cancer for many, many many years. Not everyone has to die from cancer, but unfortunately I think the stats are 1 out of 4 will be living with cancer.
So, Tina... deep breath. You and the whole family have had a shock... but things will settle down once you get a plan... and be rest assured, you are probably going to end up with a fabulous medical/oncological team
Cheryl
Thank you so much for your reply. You have provided me with some invaluable information and helped me to understand. I was having trouble understanding her feelings as my sheer panic and anxiety had taken over. I just don't want to lose her. You are right though. She does need some time to heal and feel better and then I am sure that she will be much more receptive to fighting as she is a tough lady. She is just feeling beaten down and resigned at the moment.
I am interested in your comments about the BC Cancer Agency. We are actually in a suburb or Vancouver and my mom is being treated at the Fraser Valley Center so the oncologist we talked to was from that center. I have been thinking about requesting to have her moved to the Vancouver center as I have heard great things about the team there. The liver oncology surgeon we are going to see on Wednesday is at the Vancouver BCCA so I might ask then about the possibility of moving her there. My only concern is that it would take us about 50 minutes one way to travel there and that it might be too long of a travel time for her while she is undergoing chemo. I have no idea what the effects will be like for her and if the effects will be felt immediately or not.
As for her treatment plan, they are having a port inserted and will administer chemo through that. She will go in once every two weeks for a combination of 5FU, leucovorin, camptosar and avastin. She is also going to be given an "injection" of the 5FU that will be administered over two days while she is at home. I am wondering about this treatment plan also. I have read that most people are doing FOLFOX/Avastin and my mom's seems to be similar except she is being given irinotecan (Camptosar) instead of oxaliplatin so her regim is called FOLFIRI. I am wondering if this is as good or if I should push for a FOLFOX regime. I have noticed that many on this board saw success with FOLFOX and I have also read that FOLFOX may have a more dramatic effect on tumours.0 -
Thank you so much for allpete43lost_at_sea said:I am so afraid at how this is completely out of my hands
Hi tina,
You can help alot, just read all the amazing stories from the survivors.
They are all remarkable people. You can do many positive things to help your
mum and I guess coming to the place of caring and sharing is just one.
You'll just have to keep learning step by step each day. I have been fighting everyday
for 8 months and I either learn something, or meet someone and read something here thats really inspiring and hopeful.
Just keep on loving you mum, the diagnosis is a really scary phase to go through, she's is lucky to have you.
Goodluck finding a great oncologist who can give you some hope.
Pete
Thank you so much for all your replies. You have provided me with some invaluable information and helped me to understand. I was having trouble understanding her feelings as my sheer panic and anxiety had taken over. I just don't want to lose her. You are right though. She does need some time to heal and feel better and then I am sure that she will be much more receptive to fighting as she is a tough lady. She is just feeling beaten down and resigned at the moment.
We are actually in a suburb or Vancouver and my mom is being treated at the Fraser Valley Center so the oncologist we talked to was from that center. I have been thinking about requesting to have her moved to the Vancouver center as I have heard great things about the team there. The liver oncology surgeon we are going to see on Wednesday is at the Vancouver BCCA so I might ask then about the possibility of moving her there. My only concern is that it would take us about 50 minutes one way to travel there and that it might be too long of a travel time for her while she is undergoing chemo. I have no idea what the effects will be like for her and if the effects will be felt immediately or not.
As for her treatment plan, they are having a port inserted and will administer chemo through that. She will go in once every two weeks for a combination of 5FU, leucovorin, camptosar and avastin. She is also going to be given an "injection" of the 5FU that will be administered over two days while she is at home. I am wondering about this treatment plan also. I have read that most people are doing FOLFOX/Avastin and my mom's seems to be similar except she is being given irinotecan (Camptosar) instead of oxaliplatin so her regime is called FOLFIRI and Avastin. I am wondering if this is as good or if I should push for a FOLFOX regime. I have noticed that many on this board saw success with FOLFOX and I have also read that FOLFOX may have a more dramatic effect on tumours.0 -
Tina:TinaC said:Thank you so much for all
Thank you so much for all your replies. You have provided me with some invaluable information and helped me to understand. I was having trouble understanding her feelings as my sheer panic and anxiety had taken over. I just don't want to lose her. You are right though. She does need some time to heal and feel better and then I am sure that she will be much more receptive to fighting as she is a tough lady. She is just feeling beaten down and resigned at the moment.
We are actually in a suburb or Vancouver and my mom is being treated at the Fraser Valley Center so the oncologist we talked to was from that center. I have been thinking about requesting to have her moved to the Vancouver center as I have heard great things about the team there. The liver oncology surgeon we are going to see on Wednesday is at the Vancouver BCCA so I might ask then about the possibility of moving her there. My only concern is that it would take us about 50 minutes one way to travel there and that it might be too long of a travel time for her while she is undergoing chemo. I have no idea what the effects will be like for her and if the effects will be felt immediately or not.
As for her treatment plan, they are having a port inserted and will administer chemo through that. She will go in once every two weeks for a combination of 5FU, leucovorin, camptosar and avastin. She is also going to be given an "injection" of the 5FU that will be administered over two days while she is at home. I am wondering about this treatment plan also. I have read that most people are doing FOLFOX/Avastin and my mom's seems to be similar except she is being given irinotecan (Camptosar) instead of oxaliplatin so her regime is called FOLFIRI and Avastin. I am wondering if this is as good or if I should push for a FOLFOX regime. I have noticed that many on this board saw success with FOLFOX and I have also read that FOLFOX may have a more dramatic effect on tumours.
Many people start their chemo treatments on Folfiri so I wouldn't worry too much about that. With Camptosar, you will need to keep a handle on stomach issues, particularly some nausea and diarrhea. They can give her pre-meds for that and something to have at home. The manufacturer recommends Immodium AD, but you need to find a balance, taking 2 may be too much as it was for my George, he finds that taking one is better. The chemo lab should go over all of this with you and if they don't then ask, ask, ask. Some people do take Emend, my George hasn't had that one, but it is very costly here in the US - upwards of $100.00 per pill.
Watch for the high fiber diet until she is well healed. Cheryl is spot on on the sugar thing, again, balance.
Cheryl Hutch just posted about her first chemo experience with Camptosar so if you scroll down you can read about it.
Every reacts differently. As far as supplements and such make sure you do check with your oncologist before giving mom anything new, some can do more harm than good while on chemotherapy.
Take care - Tina0 -
Slow and steady...TinaC said:Thank you so much for your
Thank you so much for your reply. You have provided me with some invaluable information and helped me to understand. I was having trouble understanding her feelings as my sheer panic and anxiety had taken over. I just don't want to lose her. You are right though. She does need some time to heal and feel better and then I am sure that she will be much more receptive to fighting as she is a tough lady. She is just feeling beaten down and resigned at the moment.
I am interested in your comments about the BC Cancer Agency. We are actually in a suburb or Vancouver and my mom is being treated at the Fraser Valley Center so the oncologist we talked to was from that center. I have been thinking about requesting to have her moved to the Vancouver center as I have heard great things about the team there. The liver oncology surgeon we are going to see on Wednesday is at the Vancouver BCCA so I might ask then about the possibility of moving her there. My only concern is that it would take us about 50 minutes one way to travel there and that it might be too long of a travel time for her while she is undergoing chemo. I have no idea what the effects will be like for her and if the effects will be felt immediately or not.
As for her treatment plan, they are having a port inserted and will administer chemo through that. She will go in once every two weeks for a combination of 5FU, leucovorin, camptosar and avastin. She is also going to be given an "injection" of the 5FU that will be administered over two days while she is at home. I am wondering about this treatment plan also. I have read that most people are doing FOLFOX/Avastin and my mom's seems to be similar except she is being given irinotecan (Camptosar) instead of oxaliplatin so her regim is called FOLFIRI. I am wondering if this is as good or if I should push for a FOLFOX regime. I have noticed that many on this board saw success with FOLFOX and I have also read that FOLFOX may have a more dramatic effect on tumours.
That's what this board is great for, TIna. To give you a different perspective on what is going on and not operate purely out of fear and panic... which is all of our first reactions. You may think some of us are so brave and solid and taking this in our stride, but trust me... we've all been there where we were operating out of fear. So know that that reaction is totally normal... but to get on with the job, hard as it is one has to put the fear on the back burner... or discard it totally.
Ok, I have to admit, I don't know all the ins and outs of how one attends which Cancer Agency. I'm pretty sure it's based on where you live (makes sense that one would go to the one closest to where they live) but then I also know I've heard of people coming from as far as Chilliwack in for their treatments to the Vancouver BC Cancer Agency. I think they are all so connected it really doesn't matter too much where you go physically... but it comes down to you being happy with your oncologist and the team they put together. Definitely a good idea to go over this with your liver oncology surgeon. Will your mom be driving herself to/from chemo? That is something else to take into consideration too. 50-60 minute drive might be a bit much if one is doing it theirselves... on the other hand, I didn't have any problem with driving when I was on the FOLFOX. I had a friend drive me the first couple of times... we were waiting to see if driving would be a problem, but it wasn't. Of course, your mileage may vary.
As for the different chemo treatment... I wouldn't worry about that. It sounds like she's going to be getting a big old dose of all the ammunition thrown at her. I started with the FOLFOX and I have to admit, the Oxypilatin in that combo really did a number on me as far as nerve damage and neuropathy. Others have not reacted like that to it. I'm now on just the Camptosar... nothing else, and am having a pretty rough week with it this week (first week of it), whereas I did not have any reaction like this to the FOLFOX. I haven't been on the Avistan yet... that is something we might try down the road. It really all has to do with one's individual situations. I don't have any lesions in my liver... my mets are in my lungs. So that's possible why they try different combos with different people.
But, by all means... write these questions down. I haven't seen anyone suggest this in a long time but when you are first starting out on this journey, whether as a caregiver who wants to get all the information possible, or the patient, whose head is probably in a fog.... the first purchase is to get a nice big 3-ring binder or notebook. Divide it up into sections or whatever makes sense to you. One section is to be all the questions you come up with between appts. You may think you are going to remember them all, but trust me on this... when you get in to see the oncologist/surgeon/radiologist/nurses/etc. you are going to remember you had a lot of questions but you can't remember any of them, or very few of them. It also is very helpful for the doctors if you come in prepared with what you want to ask so they can answer and you can record the answers. Also, if you are given any copies of reports/etc. you can keep a copy in your binder. It's not such a big deal with us here in BC because every report/test result/scan/etc is all computerized which all the oncs, surgeons/specialists/etc. have access to. Even when in any of the hospitals, the cancer agencies have access to everything on computer there... so you don't have to be carting around huge reports to take to the different appts.
But there will be ooooodles of appts. so having a good calendar system works too. And not to worry... if Mom is a fighter, she's not going to stop now. There is nothing worse than the feeling of feeling ill, or weak or just not up to scruff after a major surgery. You want to get out and do the things you did before all of this happened, but you just don't have the physical strength, even though the surgical wounds may look like they are healed nicely. There is still soooo much healing going on internally. But once she gets healed, she will shake her head and get in fighting mode. And once a full plan is in place, then it's a matter of just forging ahead and working with what we have to work with. There will be rough patches, and days of not feeling all that great... but there will be more days when she is feeling just fine
So hang in there! It does get better!
Cheryl0 -
Hi TinaTinaC said:Thank you so much for your
Thank you so much for your reply. You have provided me with some invaluable information and helped me to understand. I was having trouble understanding her feelings as my sheer panic and anxiety had taken over. I just don't want to lose her. You are right though. She does need some time to heal and feel better and then I am sure that she will be much more receptive to fighting as she is a tough lady. She is just feeling beaten down and resigned at the moment.
I am interested in your comments about the BC Cancer Agency. We are actually in a suburb or Vancouver and my mom is being treated at the Fraser Valley Center so the oncologist we talked to was from that center. I have been thinking about requesting to have her moved to the Vancouver center as I have heard great things about the team there. The liver oncology surgeon we are going to see on Wednesday is at the Vancouver BCCA so I might ask then about the possibility of moving her there. My only concern is that it would take us about 50 minutes one way to travel there and that it might be too long of a travel time for her while she is undergoing chemo. I have no idea what the effects will be like for her and if the effects will be felt immediately or not.
As for her treatment plan, they are having a port inserted and will administer chemo through that. She will go in once every two weeks for a combination of 5FU, leucovorin, camptosar and avastin. She is also going to be given an "injection" of the 5FU that will be administered over two days while she is at home. I am wondering about this treatment plan also. I have read that most people are doing FOLFOX/Avastin and my mom's seems to be similar except she is being given irinotecan (Camptosar) instead of oxaliplatin so her regim is called FOLFIRI. I am wondering if this is as good or if I should push for a FOLFOX regime. I have noticed that many on this board saw success with FOLFOX and I have also read that FOLFOX may have a more dramatic effect on tumours.
First, I'm sorry that your Mom is having to go through this. In so many case, the people feel fine and are shocked that they have cancer. That was my case.
Anyway, the FOLFOX (which I had) or FOLFIRI with Avastin sounds like a very good course of action. The Avastin can help to do some remarkable things. I had tumors that made it so I was inoperable and the Avastin shrunk them and made it possible.
I believe that the most important thing is to have the best possible medical team you can have. So much is up to them and how they treat the cancer. Things can always take a turn for the better.
-phil0 -
I just want to say a huge
I just want to say a huge thank you to all of you on this board. I was in a terrible place yesterday and although I am still upset by my mother's diagnosis, I can honestly say that all of you have given me hope. Your heartfelt thoughts and prayers as well as sharing your invaluable experience with me has done more than you can possibly imagine. I feel incredibly lost as my family embarks on this roller coaster but I am so happy that I am able to hear first hand experience from people such as yourselves who have been through this or are going through it. Thank you for your openness, your honesty and most of all for the hope that you have bestowed on me. I feel more positive hearing that others were also told that there prognosis was not good and yet they beat those odds and are doing well. I will keep you all in my prayers tonight so that we can all beat this awful, nasty, horrible disease together.
Tina0 -
Tina
You got some good replies and I hope some useful information. I know that it all sounded good to me. I just want to say that I am sorry that you have to go through this and I hope that your mother will get another opinion. She does need some time to process all that is going on. It's a lot for everyone to take in. I will be hoping for the best for you and your mother. Welcome to the board.0 -
TinaLori-S said:Tina
You got some good replies and I hope some useful information. I know that it all sounded good to me. I just want to say that I am sorry that you have to go through this and I hope that your mother will get another opinion. She does need some time to process all that is going on. It's a lot for everyone to take in. I will be hoping for the best for you and your mother. Welcome to the board.
My husband Robert did the FOLFRI with avastin and he did very well on it and the tumors have responded well to that combo. Side affects of nausea, fatigue mostly, hair loss everywhere except his head.
Do get another opinion...and good luck
Angela0 -
stage 4 cancer without symptomsmukamom said:Tina
My husband Robert did the FOLFRI with avastin and he did very well on it and the tumors have responded well to that combo. Side affects of nausea, fatigue mostly, hair loss everywhere except his head.
Do get another opinion...and good luck
Angela
i too was living with cancer and feeling fine until my abdomen grew a large ovarian cyst, which are 90% benign. mine wasn't, surgeon found cancer in my colon and 3 lymph nodes, removed all cancer, then ,bam, follow up pet scan found 4 large tumors in the liver. i have had folfiri with avastin and 5fu home pump, after 4 rounds tumors were shrunk enough so that i now qualify for liver resection. chemo is not fun but i have gone on with life pretty much normally. even with successful surgery, this cancer often recurs so i have come to ready myself for heavenly life, even long for it at times, i advise you to let your mother know you will be okay without her as it is very hard on us cancer patients to hurt for our loved ones. that to me is the worst thing about dying. the losing hair is no fun either. fake it if you have to but prepare yourself for the worst and be strong for your mom. best of luck. god bless you all.
amber0
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