Rectal cancer stage 4 with mets in liver and lungs - feeling lost, need help and advise

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Makord
Makord Member Posts: 37

Dear all, 

i'd really need some help and advise. 

My mother (turned 70 last month, the most energetic, kind and full of life person I know) was diagnosed with rectal cancer in Feb17, while she was going through stroke rehab (! all of a sudden and out of nowhere she suffered a severe stroke after New Years). She started, in parallel with the rehabilitation,  radiation+xeloda and then had surgery with permanent colostomy in end of Jul17. Everything went well and we started thinking we had left all this nightmare slowly behind. But unfortunately 3 weeks ago,  her 2m-after-surgery CT scan showed metastasis in liver and in the lungs! We simply cannot believe it. And we are devastated...the CT scans 1 day before the surgery were super clean, her biopsy after the surgery showed T2N0...how can we now face stage 4 cancer, just 2M after surgery?

 We are now in the process of deciding which chemo to do. We want to fight this strongly and choose the absolute best treatment for her, at the same time I'm so scared for the fact we have so many health battles to fight given she is a person still recovering from stroke...how can she handle all this?

The first oncologist proposes Folfox 4 and 2 days in hospital every 2 weeks. He doesn't recommend putting a port due to her vascular problems. The second oncologist we asked recommends Folfox 6 with a port/no need for her to stay in hospital. Also the second originally proposed Avastin on top of Folfox 6, who the first had rejected as very risky also because of her vascular problems. Unfortunately she has the KRAS mutation and we cannot use vectibix. 

 

Do you know what's the difference between Folfox 4 and Folfox 6? How can I ensure we choose wisely the most effective therapy for my mom? Other options?

is the port surgery dangerous or risky?

is the 48h therapy process outside of hospital with the pump risky? 

is immunotherapy an option?

Do we have good chances to turn this into a chronic disease? Is stage 4 rectal cancer palatable? Can we hope for another surgery in the liver or lungs to remove parts of the tumor after Folfox? Any experience or positive survivor stories would mean so much to us right now. 

 

Im sorry for the so many questions....I feel lost and devastated right now...want to do the absolute best for my mother and want to simpky have her in our lives for many many years ahead... Can't stand the thought that this might be the end. And it won't be....just need some support and advise...

 

thank you truly and deeply!

Mariana

 

 

 

 

Comments

  • Mikenh
    Mikenh Member Posts: 777
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    Hello Mariana,

    Hello Mariana,

    I'm sorry for the problems that your mother has and the challenges that you face in choosing treatment plans. Stage 2 or 3 becoming Stage 4 is the scary thing for those of us going through treatment or that are done with treatment. My situation is similar, Stage III, Radiation and Xeloda, surgery soon, followed likely by XELOX. I've had a little cough for a few days and the paranoia in me worries that it's lung mets even though there are lots of people coughing at the office.

    There are folks here that have had mets that have overcome them. I  do not know the drugs outside of Xeloda and XELOX but I'm sure that there are others here that do.

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
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    Sorry

    So sorry for your mother's diagnosis but I'm unable to help with those treatments as I'm not knowledgeable with them.  Wishing your mother the best.  It has to be hard going through this in such a very short couple of months.  Sometimes scans don't always show things right away and a couple months can make a difference.  It can be a whirlwind of emotions while going through things that we can't understand.  Make sure that your mom's doctor explains all that can happen with treatment and she will be treated with utmost care.  She should always have someone with her during her appointments just so that you have 4 ears and not just hers.   Keep us informed please.

    Hugs!  Kim

  • Makord
    Makord Member Posts: 37
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    Mikenh said:

    Hello Mariana,

    Hello Mariana,

    I'm sorry for the problems that your mother has and the challenges that you face in choosing treatment plans. Stage 2 or 3 becoming Stage 4 is the scary thing for those of us going through treatment or that are done with treatment. My situation is similar, Stage III, Radiation and Xeloda, surgery soon, followed likely by XELOX. I've had a little cough for a few days and the paranoia in me worries that it's lung mets even though there are lots of people coughing at the office.

    There are folks here that have had mets that have overcome them. I  do not know the drugs outside of Xeloda and XELOX but I'm sure that there are others here that do.

    Mikenh thanks so much for

    Mikenh thanks so much for your reply. Sending you my warmest wishes, stay strong during treatment and all the best for your surgery coming up. my mother did xelox and radiation before the surgery as well. Surgery is a very positive step forward. All the very best! 

  • Makord
    Makord Member Posts: 37
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    Sorry

    So sorry for your mother's diagnosis but I'm unable to help with those treatments as I'm not knowledgeable with them.  Wishing your mother the best.  It has to be hard going through this in such a very short couple of months.  Sometimes scans don't always show things right away and a couple months can make a difference.  It can be a whirlwind of emotions while going through things that we can't understand.  Make sure that your mom's doctor explains all that can happen with treatment and she will be treated with utmost care.  She should always have someone with her during her appointments just so that you have 4 ears and not just hers.   Keep us informed please.

    Hugs!  Kim

    Annabelle thanks so much for

    Annabelle thanks so much for your warm note and your wishes, they mean a lot!!! I'm the main carer, I'm standing by her with all my strength, have done extensive research on doctors and treatments, it's just that right now she faces so many things in parallel and the risks are bigger so choosing the right way forward is tough. All of them recommend Folfox but one is for Folfox 4 and the other for Folfox 6 (I believe there is difference in dosages) and one is recommending getting this inside hospital for 48hours and the other through catheter and port at home.

    best wishes and thoughts for all!

     

  • Trubrit
    Trubrit Member Posts: 5,800 Member
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    Dang!

    Life unloaded on your mum, big time. It just doesn't seem fair. 

    Having Cancer spread after getting clear scans, is all too familiar.  I had two clear scans before the Cancer spread to my liver. It was such a huge blow. I felt so healthy, so happy, and then the new diagnosis. I felt like I had been sucker punched. 

    It is a hard decision your mum and the family face. There is a balance between fighting the Cancer with more treatment, which can leave your body sick and wasted; and letting nature take its course and enjoing time with family while feeling healthy.  

    The human spirit has a will of its own, and fighting is usually what it wants to do. 

    I don't know the difference between FOLFOX 4 or 6. I guess I've never heard of it before. I Just had plain old FOLFOX with the 48 hour 5FU pump, followed by 6 weeks of radiatoin and 24/7 hook up to the 5FU.  It was not an easy journey, and I started out healthy. 

    I only had one hitch with the pump, when it quit one night. That's a longer story which I won't bother you with.  I think the pump is quite safe, and many here have had no problems other than the side effects, which you can't get away from. 

    Any surgery is risky. But the port is usually placed while the patient is under local anesthetic (Propofol). They do place it close to the heart though, so your mum may be at a bigger risk.  But, the port is WONDERFUL! It really saves the veins from continuous punctures and damage from the chemo. 

    Immunotherapy is a new breakthrough, and I believe it is the future of Cancer treatment. I don't know if your mum is a candidate, but definitely worth talking to her Oncologist about. 

    There are several folks here on the forum who are treating their stage IV as a chronic disease, so yes, it can be done. I don't know what the difference is between them and those who have passed away, I personally think its quite random, who dies and who lives. A roll of the dice, so to speak. Just my own thoughts though. 

    Feeling lost and devestated is normal. Don't deny those feelings, roll with them. Feel the emotion, just don't let it take over and bring you down. You know your mum needs you to be strong, but don't hide your sorrow. I have two sons and a husband. Sometimes they were so strong I got to feeling that they didn't udnerstand or care what I was going through. Chemo plays with your emotions as well as your physical self. 

    Take care of yourself, also. 

    I don't know if I've been of any help, but do know that we here at the forum do care, and care allot about you and your mum. 

    Tru  

     

  • Makord
    Makord Member Posts: 37
    edited October 2017 #7
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    Trubrit said:

    Dang!

    Life unloaded on your mum, big time. It just doesn't seem fair. 

    Having Cancer spread after getting clear scans, is all too familiar.  I had two clear scans before the Cancer spread to my liver. It was such a huge blow. I felt so healthy, so happy, and then the new diagnosis. I felt like I had been sucker punched. 

    It is a hard decision your mum and the family face. There is a balance between fighting the Cancer with more treatment, which can leave your body sick and wasted; and letting nature take its course and enjoing time with family while feeling healthy.  

    The human spirit has a will of its own, and fighting is usually what it wants to do. 

    I don't know the difference between FOLFOX 4 or 6. I guess I've never heard of it before. I Just had plain old FOLFOX with the 48 hour 5FU pump, followed by 6 weeks of radiatoin and 24/7 hook up to the 5FU.  It was not an easy journey, and I started out healthy. 

    I only had one hitch with the pump, when it quit one night. That's a longer story which I won't bother you with.  I think the pump is quite safe, and many here have had no problems other than the side effects, which you can't get away from. 

    Any surgery is risky. But the port is usually placed while the patient is under local anesthetic (Propofol). They do place it close to the heart though, so your mum may be at a bigger risk.  But, the port is WONDERFUL! It really saves the veins from continuous punctures and damage from the chemo. 

    Immunotherapy is a new breakthrough, and I believe it is the future of Cancer treatment. I don't know if your mum is a candidate, but definitely worth talking to her Oncologist about. 

    There are several folks here on the forum who are treating their stage IV as a chronic disease, so yes, it can be done. I don't know what the difference is between them and those who have passed away, I personally think its quite random, who dies and who lives. A roll of the dice, so to speak. Just my own thoughts though. 

    Feeling lost and devestated is normal. Don't deny those feelings, roll with them. Feel the emotion, just don't let it take over and bring you down. You know your mum needs you to be strong, but don't hide your sorrow. I have two sons and a husband. Sometimes they were so strong I got to feeling that they didn't udnerstand or care what I was going through. Chemo plays with your emotions as well as your physical self. 

    Take care of yourself, also. 

    I don't know if I've been of any help, but do know that we here at the forum do care, and care allot about you and your mum. 

    Tru  

     

    Dear Tru, thank you so much

    Dear Tru, thank you so much for your message, the care and the advice...your story fills me with strength and hope! What phase are you in now? Are you still in therapy of any kind? Did you have any sort of surgery for the liver met?

    Sending you strength and warm wishes for the very best! Same for all your family! 

  • Trubrit
    Trubrit Member Posts: 5,800 Member
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    Hello Makord

    I was diagnosed five years ago next month. Because my tumour was big and blocking the colon, I had surgery immedietely, followed by FOLFOX & 5 FU from January to June of 2013.  Radiatoin and 24/7 5FU for six weeks. 

    Nine months after treatment ended (April 2014), they found the one liver tumour (thank God, just one) 2cm. I had Thermal Microwave Ablation on that; and because of my overall general health and it being just the one met, they decided against mop up chemo.

    I had scans and CEA for a couple of years every three months, and now I have CEA every three and scans every six. I have been NED (No evidence of disease) ever since. 

    I am coming up for my next set of test. It is always a scary time. Even when you are through with treatment, the fear of recurrance is forever there. 

    I am happy and healthy. 

    It will be an upward battle for your mum, but there are things you can all do to help her, and give her the best chance to beat it. Being positive at the forefront. I can't tell you how much that helps. Its a head game, for sure. 

    She is a lucky mother, having you here, searching for advice. I can't tell you she will live, but I can tell you there are many here who have fought and are winning; and there is absolutely no reason your mum can't be among them. 

    Stick around. We will all help you help your mum. 

    Tru

  • Mikenh
    Mikenh Member Posts: 777
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    Trubrit said:

    Hello Makord

    I was diagnosed five years ago next month. Because my tumour was big and blocking the colon, I had surgery immedietely, followed by FOLFOX & 5 FU from January to June of 2013.  Radiatoin and 24/7 5FU for six weeks. 

    Nine months after treatment ended (April 2014), they found the one liver tumour (thank God, just one) 2cm. I had Thermal Microwave Ablation on that; and because of my overall general health and it being just the one met, they decided against mop up chemo.

    I had scans and CEA for a couple of years every three months, and now I have CEA every three and scans every six. I have been NED (No evidence of disease) ever since. 

    I am coming up for my next set of test. It is always a scary time. Even when you are through with treatment, the fear of recurrance is forever there. 

    I am happy and healthy. 

    It will be an upward battle for your mum, but there are things you can all do to help her, and give her the best chance to beat it. Being positive at the forefront. I can't tell you how much that helps. Its a head game, for sure. 

    She is a lucky mother, having you here, searching for advice. I can't tell you she will live, but I can tell you there are many here who have fought and are winning; and there is absolutely no reason your mum can't be among them. 

    Stick around. We will all help you help your mum. 

    Tru

    Thanks for your story. It

    Thanks for your story. It counterbalances the difficult ones out there (not saying that yours wasn't difficult but you've been NED for a while).

  • Trubrit
    Trubrit Member Posts: 5,800 Member
    edited October 2017 #10
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    Mikenh said:

    Thanks for your story. It

    Thanks for your story. It counterbalances the difficult ones out there (not saying that yours wasn't difficult but you've been NED for a while).

    Oh, it was difficult. Very difficult, but....

    I have have been feeling wonderful every single day since my liver ablation, and that has made the difficult all worth it. 

    Tru

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
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    Makord said:

    Annabelle thanks so much for

    Annabelle thanks so much for your warm note and your wishes, they mean a lot!!! I'm the main carer, I'm standing by her with all my strength, have done extensive research on doctors and treatments, it's just that right now she faces so many things in parallel and the risks are bigger so choosing the right way forward is tough. All of them recommend Folfox but one is for Folfox 4 and the other for Folfox 6 (I believe there is difference in dosages) and one is recommending getting this inside hospital for 48hours and the other through catheter and port at home.

    best wishes and thoughts for all!

     

    God Bless You

    Sounds like you are a great advocate for your mother.  She sure is lucky to have you as a daughter.  Once again, wishing your mother well.

    Hugs!  Kim

  • Makord
    Makord Member Posts: 37
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    Trubrit said:

    Oh, it was difficult. Very difficult, but....

    I have have been feeling wonderful every single day since my liver ablation, and that has made the difficult all worth it. 

    Tru

    How encouraging! do you know

    How encouraging! do you know what are usually the principles for deciding on ablation? My mother has more than one mets both in liver and the lungs but they are relatively small  I believe (biggest is 1.3cm). How small should they become to assess surgery or ablation or anything else that could take them out? Is ablation relevant for the lungs too? What is the most urgent to deal with? Liver I guess..? 

    stay healthy and strong! My very best wishes! 

  • Bellen
    Bellen Member Posts: 281 Member
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    CRC with liver mets

    Hello - I was diagnosed with CRC with multiple liver mets (incurable and inoperable) last summer.  I have had 28 chemo treatments of avastin + folfiri.  My Onco mentioned folfox (which he says I can still have in the future), but I believe he felt folfiri was a titch more effective and possibly a cocktail that I could be on longer without the neuropathy that folfox often causes.  It is the same cocktail, but irinotecan, instead of oxyplatin.  I am tolerating the treatment and there has been reduction in the size of the tumours, although because the tumours are dispersed, I am not operable.  I do have a number of side effects (complicated by a small intestinal stricture which I have that can cause partial blockages), but as I say I am tolerating the side effects - day by day - sometimes feeling okay and other days pretty crappy. My side effects are mainly intestinal - constipation, diarrhea, crappy feeling stomach affects eating/weight, lower abd cramps, etc.    In the past months, I have had 4 blood transfusions (low hemoglobin, out of breath) and have white blood cell shots after the 5Fu bottle comes off to help my immune system. As time goes on, I have needed an extra week (regular schedule was every 2 wks) to recoup my system, and we have talked about more breaks, as the chemo is whacking me more as time goes on.  Best of luck.  I have never heard of folfox 4 or 6, so cannot comment.

  • Makord
    Makord Member Posts: 37
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    Bellen said:

    CRC with liver mets

    Hello - I was diagnosed with CRC with multiple liver mets (incurable and inoperable) last summer.  I have had 28 chemo treatments of avastin + folfiri.  My Onco mentioned folfox (which he says I can still have in the future), but I believe he felt folfiri was a titch more effective and possibly a cocktail that I could be on longer without the neuropathy that folfox often causes.  It is the same cocktail, but irinotecan, instead of oxyplatin.  I am tolerating the treatment and there has been reduction in the size of the tumours, although because the tumours are dispersed, I am not operable.  I do have a number of side effects (complicated by a small intestinal stricture which I have that can cause partial blockages), but as I say I am tolerating the side effects - day by day - sometimes feeling okay and other days pretty crappy. My side effects are mainly intestinal - constipation, diarrhea, crappy feeling stomach affects eating/weight, lower abd cramps, etc.    In the past months, I have had 4 blood transfusions (low hemoglobin, out of breath) and have white blood cell shots after the 5Fu bottle comes off to help my immune system. As time goes on, I have needed an extra week (regular schedule was every 2 wks) to recoup my system, and we have talked about more breaks, as the chemo is whacking me more as time goes on.  Best of luck.  I have never heard of folfox 4 or 6, so cannot comment.

    Belen thanks so much for

    Belen thanks so much for sharing your difficult experience. You are a true hero to my eyes. Great news that the tumors have been reduced! Keep the strength! Sending you my warmest wishes and thoughts!

  • Makord
    Makord Member Posts: 37
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    Wanted to let you know that

    Wanted to let you know that today we started with our first therapy. Folfox 4 it is for the start. My mother refused the port (at least for now) so we opted for hospitalisation. we will see how she will tolerate and assess if we should increase to folfox 6 gradually and if at some point we can add Avastin. My mother is smiling and gives courage to all with her attitude. I'm so scared... Wish us luck and strength! 

     

  • Trubrit
    Trubrit Member Posts: 5,800 Member
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    Makord said:

    Wanted to let you know that

    Wanted to let you know that today we started with our first therapy. Folfox 4 it is for the start. My mother refused the port (at least for now) so we opted for hospitalisation. we will see how she will tolerate and assess if we should increase to folfox 6 gradually and if at some point we can add Avastin. My mother is smiling and gives courage to all with her attitude. I'm so scared... Wish us luck and strength! 

     

    Wish you all more than luck

    I am sorry that your mum has chosen not to go with the port - for now - but understandable considering the added risk because of her storke. 

    And yes, I'll be sending all the good vibes I can, that she breezes through the tough parts. 

    Tru

  • Mikenh
    Mikenh Member Posts: 777
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    Makord said:

    Wanted to let you know that

    Wanted to let you know that today we started with our first therapy. Folfox 4 it is for the start. My mother refused the port (at least for now) so we opted for hospitalisation. we will see how she will tolerate and assess if we should increase to folfox 6 gradually and if at some point we can add Avastin. My mother is smiling and gives courage to all with her attitude. I'm so scared... Wish us luck and strength! 

     

    I wish her success. The stuff

    I wish her success. The stuff I've read endorse the port but this is a special case. One thing that I've found with parents is that you can't tell them what to do or what not to do. They make their own choices even though we might not agree with them. It is good that she has it done in a professional setting and I suppose that she might change her mind down the road. Good thing is that treatment has started.

  • Makord
    Makord Member Posts: 37
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    Thank you Miken and Trubrit! 

    Thank you Miken and Trubrit!