Mum’s rectal cancer stage 4-I just got the CT scan results and it’s not good-please advise

Makord
Makord Member Posts: 37
in Colorectal Cancer #1

My mom has stage 4 rectal cancer with mets in liver and the lungs. The mets were diagnosed 20th of September (previous CT scan), it took us 1 month and 10 days to start chemo , she started Folfox 4 in November 1st, she had 4 rounds since then and doctor asked for a CT scan now to check progress. I just got the results today and unfortunately the liver mets have deteriorated (have increased in size plus there seems to be a new one). The lung mets have remained stable with at least one of them decreasing in size. Also the report mentions something new on the right breast that needs further investigation. I’m devastated...cannot stop crying actually...! Couldn’t yet tell my mother and in all honesty I don’t know what to tell her after all this terrible year of consecutive bad news on her health and her amazing fight...

please advise:

1 has anyone in this forum being in similar situation? Is there still hope?

2 does that mean Folfox 4 doesn’t work or we should continue trying for a couple more rounds? Im thinking that given chemo started 40 days later than initial CT scan maybe the mets could have been even bigger and we dont simply know? The fact that the lung mets stayed stable or one at least decreased means something no?

3 importantly are there any other treatment options for such a stage and given we cannot take the targeted therapies (she is KRAS mutated)? 

Any advise, hope similar cases would greatly help me and my mom right now. Thank you so much!!!!!

health and love for all in the new year!

Mariana 

Comments

  • Canadian Sandy
    Canadian Sandy Member Posts: 784 Member
    #2
    I’m so sorry for all the

    I’m so sorry for all the problems you and your mom are facing. I don’t have the info to help but never ever give up hope.  My prayers are with you.

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #3
    Sorry

    Sorry about your mom's diagnosis.  Unfortunately I'm not able to help you but please don't give up hope.  Your mom's doctor might need to treat her differently.  There are approaches that can be taken that might make a difference.  I'm not a doctor so I'm not sure but other people have tried different things.  Wishing you mom well. 

    Kim

  • PamRav
    PamRav Member Posts: 348 Member
    edited January 2018 #4
    I believe

    that there’s always hope.  You’ve made a well thought out list of questions to ask the oncologist.  Be sure he answers them all to your satisfaction 

    i Can’t answer your questions, but I can appreciate your anguish over those CT results.  Feel what you need to feel, then gather up all your strength to help your mom  fight this fight.  There are times that the cancer can’t be cured, but that it gets treated like a chronic disease. there are plenty of folks on this board that are surviving and even thriving post diagnosis 

    So don’t give up hope, 

    Peace

    pam 

  • Makord
    Makord Member Posts: 37
    edited January 2018 #5
    Dear Pam, Kim, Sandy, thank

    Dear Pam, Kim, Sandy, thank you so much for your encouraging words! They mean so much in such difficult times! Truly thank you!

    I met the oncologist today, he proposed we change to Folfiri (vs. Folfox) and he is considering adding also Avastin after he checks the risks of bleeding (given my moms stroke/vessels history). If anyone ever haa experience with these two new medicines (effectiveness vs Folfox, side effects?) please share. I’ll be seeking for 2nd opinion on Monday. 

    I’m tryng to keep up hope, it’s just that Im so scared right now that nothing will work if the basic Folfox drug didn’t...I don’t want to think like that but right now fear levels are sky rocketing...hopefully tomorrow will be a better day. 

    If any more information thanks so much for sharing.

    Healthy days for all,

    mariana 

  • Mikenh
    Mikenh Member Posts: 777 Member
    #6
    Stage 4 is tough but I do see

    Stage 4 is tough but I do see some miracles out there.

    You might give the National Cancer Institute a look as they're doing trials using Tumor Inflitrating Lymphocytes. In some cases like KRAS G12D and KRAS G12V, they seem to have solutions. They are working on finding TILs for other gene mutations as well.

    There's a lady that was cured with this at the Colon Talk forums and she had KRAS G12D. They shrunk 7 tumors though one didn't shrink completely - they surgically removed the 7th. It was a remarkable recovery using her own immune system cells. They just took them out of her and grew a ton more of them. This is likely the approach of the future.

    https://ccr.cancer.gov/sb-faqs

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    edited January 2018 #7
    Hope

    Just tonight someone posted about a clear CT scan that had spread to other organs and it had been over two years of clear scans.  Please don't give up hope and hopefully the new treatment will work and she will be more responsive.  Heads up there are things that can help and I'm wishing her the best.

    Kim

  • vtspa6
    vtspa6 Member Posts: 172 Member
    edited January 2018 #8
    Mariana...

    I believe the Avastin will help a lot.  I remember my husband did not start chemo until 2 months later after diagnosis.  They needed to do a biopcy to the lungs to make sure it was colon mets and not a seperate lung cancer.  That was the longest 2 months!  For his treatment he is on chemo for life (just finished his 60th treatment) is now on Folfiri w/Avastin).  He was on Folfox w/Avastin but this caused neorothopy.  Anyways, the chemo has been working, this is his 3rd year and he is still here! Hope all goes well for your mother.

  • Makord
    Makord Member Posts: 37
    #9
    Mikenh said:

    Stage 4 is tough but I do see

    Stage 4 is tough but I do see some miracles out there.

    You might give the National Cancer Institute a look as they're doing trials using Tumor Inflitrating Lymphocytes. In some cases like KRAS G12D and KRAS G12V, they seem to have solutions. They are working on finding TILs for other gene mutations as well.

    There's a lady that was cured with this at the Colon Talk forums and she had KRAS G12D. They shrunk 7 tumors though one didn't shrink completely - they surgically removed the 7th. It was a remarkable recovery using her own immune system cells. They just took them out of her and grew a ton more of them. This is likely the approach of the future.

    https://ccr.cancer.gov/sb-faqs

    Thank you so much Mikenh for

    Thank you so much Mikenh for this recommendation! I just wrote to them to initiate the evaluation process. Let’s see if this can bring something. 

    Thanks again!

  • Makord
    Makord Member Posts: 37
    #10
    Annabelle41415 said:

    Hope

    Just tonight someone posted about a clear CT scan that had spread to other organs and it had been over two years of clear scans.  Please don't give up hope and hopefully the new treatment will work and she will be more responsive.  Heads up there are things that can help and I'm wishing her the best.

    Kim

    Thank you so much Kim! This

    Thank you so much Kim! This gives hope! 

  • Makord
    Makord Member Posts: 37
    #11
    vtspa6 said:

    Mariana...

    I believe the Avastin will help a lot.  I remember my husband did not start chemo until 2 months later after diagnosis.  They needed to do a biopcy to the lungs to make sure it was colon mets and not a seperate lung cancer.  That was the longest 2 months!  For his treatment he is on chemo for life (just finished his 60th treatment) is now on Folfiri w/Avastin).  He was on Folfox w/Avastin but this caused neorothopy.  Anyways, the chemo has been working, this is his 3rd year and he is still here! Hope all goes well for your mother.

    I hope so, Avastin is our big

    I hope so, Avastin is our big hope right now. Your husband‘s story is so encouraging. I wholeheartedly wish you and your husband many years of good health! 

  • Makord
    Makord Member Posts: 37
    #12
    lizard44 said:

    Don't give up

    I'm sorry to hear that your mom's scan wasn't what you'd hoped for, but don't give up. After being diagnosed with stage 4  rectal cancer  with mets to the liver almost three years ago, I  had  eight treatments with Folfox plus Avastin, folllowed by 28  radiation treatments combined with a  5-FU chemo pump.  The rectal tumor shrank dramatically, and the  liver mets also shrank, but because I was beginning to show signs of increasing neuropathy,  my oncologist switched me from the Folfox and began   5-fu, Fusilev and Avastin.   Unfortunately, the liver tumor  began to increase in size, showing an 18% increase between scans. My oncologist  switched to   Irinotecan and Erbitux  and the liver tumor shrank again to the point it could be ablated. I have since had the ablation and APR surgery with a permanent colostomy and am on maintenance therapy with the irinotecan and Erbitux. My quality of life has been good and I've been able to maintian an active lifestyle with minimal side effects, for which I am very thankful. My oncologist says she has a whole arsenal of weapons to use against cancer, and when one stops working we'll try another or another combination.  As others have pointed out, new research is being done and new treatments, such as immunotherapy are being tried and tested all the time. What works for one person may not work as well for another,  not everyone can tolerate  some of the drugs and, as you have discovered with your mother some targeted therapies like Erbitux  are not beneficial because of her KRAS mutations, but I am hopeful that the Folfiri plus Avastin will  work well  for your mother as  it has for others.

    Your story is really touching

    Your story is really touching and admirable, thanks for sharing, it certainly gives hope! Do you happen to know what are the chances for Folfiri to work if Folfox hasn’t? I’m extremely worried as their only difference is one drug out of the three...

    With regards to ablation I guess this can happen as long as the mets start decreasing, don’t know as of which size though...questions to the doc ultimately. I’m looking also into immunotherapy. I’m aware of Keytruda but I understand that only a very small % can benefit from it. But for sure we will do the tests to see if she is eligible for this drug too. 

    it’s good to hear your doc seems to have a lot of options to offer, will try to look deeper into more options for my mother too via our doc.

    Thanks again so much for your support and wishes! All the very best to you too!

  • lizard44
    lizard44 Member Posts: 409 Member
    #13
    Don't give up

    I'm sorry to hear that your mom's scan wasn't what you'd hoped for, but don't give up. After being diagnosed with stage 4  rectal cancer  with mets to the liver almost three years ago, I  had  eight treatments with Folfox plus Avastin, folllowed by 28  radiation treatments combined with a  5-FU chemo pump.  The rectal tumor shrank dramatically, and the  liver mets also shrank, but because I was beginning to show signs of increasing neuropathy,  my oncologist switched me from the Folfox and began   5-fu, Fusilev and Avastin.   Unfortunately, the liver tumor  began to increase in size, showing an 18% increase between scans. My oncologist  switched to   Irinotecan and Erbitux  and the liver tumor shrank again to the point it could be ablated. I have since had the ablation and APR surgery with a permanent colostomy and am on maintenance therapy with the irinotecan and Erbitux. My quality of life has been good and I've been able to maintian an active lifestyle with minimal side effects, for which I am very thankful. My oncologist says she has a whole arsenal of weapons to use against cancer, and when one stops working we'll try another or another combination.  As others have pointed out, new research is being done and new treatments, such as immunotherapy are being tried and tested all the time. What works for one person may not work as well for another,  not everyone can tolerate  some of the drugs and, as you have discovered with your mother some targeted therapies like Erbitux  are not beneficial because of her KRAS mutations, but I am hopeful that the Folfiri plus Avastin will  work well  for your mother as  it has for others.

  • Raspberry_Rainbow
    Raspberry_Rainbow Member Posts: 1
    #14
    Hello. I'm a new member.

    I'm looking for a more active online support website. My situation is complicated. Are there many people here experienced with colorectal cancer and permanent colostomy? I'm post diagnosis (Oct.'16) rectal cancer and lung carcinoid tumor, Xeloda & radiation, abdominoperitonel (rectal) resection surgery (3/17) (including laproscopic colostomy), FOLFOX infusion, and 3 monitoring CTs and blood tests. The last Radiologist reading my CT in Dec said I have stable tiny lesions in my spleen suggestive of metastasis; not likely abscesses. Also said I have a 1.2 cm. liver hemangioma and several stable tiny lesions suggestive of mets in my liver; not likely abscesses. She said they're too tiny to biopsy or see clearly enough on PET scan; better with MRI. My Oncologist thinks they might be carcinoid mets from my lung. My 5 pelvic CTs and 4 Chest CTs, 2 pelvic MRIs, and 1 PET scans have inconsistently showed the tiny lesions in both and the small lesion (hemangioma) since fall of 2016. I just had my 1st CGA test which was high, while my CEA started out high and is now normal. I'm quite concerned about these lesions, frustrated that 9 different Radiologists read my tests and I didn't have a baseline CGA done, and wishing all this stuff was done like it was in Sept. The good news is that the lesions are stable and no evidence of local recurrence of the rectal cancer (not to mention, they took it and the sigmoid colon out months ago). Both of my cancers are less common than others; I'm so "lucky" (not) and have 2 primary cancers! What a situation!!! 

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #15
    Raspberry_Rainbow said:

    Hello. I'm a new member.

    I'm looking for a more active online support website. My situation is complicated. Are there many people here experienced with colorectal cancer and permanent colostomy? I'm post diagnosis (Oct.'16) rectal cancer and lung carcinoid tumor, Xeloda & radiation, abdominoperitonel (rectal) resection surgery (3/17) (including laproscopic colostomy), FOLFOX infusion, and 3 monitoring CTs and blood tests. The last Radiologist reading my CT in Dec said I have stable tiny lesions in my spleen suggestive of metastasis; not likely abscesses. Also said I have a 1.2 cm. liver hemangioma and several stable tiny lesions suggestive of mets in my liver; not likely abscesses. She said they're too tiny to biopsy or see clearly enough on PET scan; better with MRI. My Oncologist thinks they might be carcinoid mets from my lung. My 5 pelvic CTs and 4 Chest CTs, 2 pelvic MRIs, and 1 PET scans have inconsistently showed the tiny lesions in both and the small lesion (hemangioma) since fall of 2016. I just had my 1st CGA test which was high, while my CEA started out high and is now normal. I'm quite concerned about these lesions, frustrated that 9 different Radiologists read my tests and I didn't have a baseline CGA done, and wishing all this stuff was done like it was in Sept. The good news is that the lesions are stable and no evidence of local recurrence of the rectal cancer (not to mention, they took it and the sigmoid colon out months ago). Both of my cancers are less common than others; I'm so "lucky" (not) and have 2 primary cancers! What a situation!!! 

    Stable

    It's good that they are stable and no recurrence.  It sounds like you have been through a lot in the last year.  It would be good if you post a seperate post so that others can read your story.  You should have others commenting on your situation but it's easier when you make your own post.  Wishing you well.

    Kim

  • Makord
    Makord Member Posts: 37
    edited January 2018 #16
    i have the following

    i have the following situation: my moms primary oncologist recommends we stay the course, i.e. to continue with Folfox 4 but to add also on top Avastin. She believes the deterioration in the liver is not that big and that we shouldn’t get rid of a med so quickly (potentially because we don’t have so many options afterward??). She also believes Avastin will make a difference while she recommends CEA check after two rounds. Only if then the tumors in the liver continue to increase will she change to Folfiri. 

    On the other hand the other two oncologists I consulted (2nd & 3rd opinion) clearly recommended to change immediately to Folfiri+Avastin. They believe it’s clear Folfox doesn’t work and we shouldn’t lose time.

    Anybody has been in similar situation? Any advise on how to choose? For perspective the liver mets grew from 5mm to 17mm, from 14mm to 22mm, from 13mm to 21mm + a new one of 5mm. 

    Mamy thanks for the help!

    Mariana 

  • Ucimpark
    Ucimpark Member Posts: 23
    #17
    Stage 4 reccurent rectal cancer with mets in/on abdominal wall

    Hi mariana,

     

    Be strong and keep positive thinking! My husband had his reccurent stage 4 rectal cancer with mets in/on his abdominal wall. First anf second chemo put him in the hospital for over 2 months (from all other complications, side effects and active his crohn's disease),but then after tried so much different medications for side effects and chemo finnaly found the one that his body can tolerate. 

    I dont know much about all the meds, but his one of the fighters that still fighting..

    Sending  lots prayers, love n hugs!

     

  • linda7408
    linda7408 Member Posts: 21
    #18
    Raspberry_Rainbow said:

    Hello. I'm a new member.

    I'm looking for a more active online support website. My situation is complicated. Are there many people here experienced with colorectal cancer and permanent colostomy? I'm post diagnosis (Oct.'16) rectal cancer and lung carcinoid tumor, Xeloda & radiation, abdominoperitonel (rectal) resection surgery (3/17) (including laproscopic colostomy), FOLFOX infusion, and 3 monitoring CTs and blood tests. The last Radiologist reading my CT in Dec said I have stable tiny lesions in my spleen suggestive of metastasis; not likely abscesses. Also said I have a 1.2 cm. liver hemangioma and several stable tiny lesions suggestive of mets in my liver; not likely abscesses. She said they're too tiny to biopsy or see clearly enough on PET scan; better with MRI. My Oncologist thinks they might be carcinoid mets from my lung. My 5 pelvic CTs and 4 Chest CTs, 2 pelvic MRIs, and 1 PET scans have inconsistently showed the tiny lesions in both and the small lesion (hemangioma) since fall of 2016. I just had my 1st CGA test which was high, while my CEA started out high and is now normal. I'm quite concerned about these lesions, frustrated that 9 different Radiologists read my tests and I didn't have a baseline CGA done, and wishing all this stuff was done like it was in Sept. The good news is that the lesions are stable and no evidence of local recurrence of the rectal cancer (not to mention, they took it and the sigmoid colon out months ago). Both of my cancers are less common than others; I'm so "lucky" (not) and have 2 primary cancers! What a situation!!! 

    Sigmoid removed

    Hi I had rectal cancer, Sigmoid and had surgery. I've had a permanent colostomy for 9 months. Have a question maybe I can answer?

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