Not so good news today on Jim :-(

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Nana2
Nana2 Member Posts: 255
edited March 2014 in Colorectal Cancer #1
I'm still waiting for all the details because I am sick and couldn't go with Jim to his Dr. appt. today and a Nurse friend went with him and will be sending me all her notes. But Jim's CT scan showed that the spots on his liver have grown. We are going to try and not get too nervous until we see his Doctor at Loyola because she usually has a different opinion of what's going on with these scans, but I don't have a good feeling about those spots being larger. I guess the plan is to get a PET scan next Tuesday, lay off the chemo for a few weeks and then possibly change it from the Folfox to Erbitux(sp). Don't know what the side affects for that are like, maybe some of you could cue us in. He will see the Doctor at Loyola first on December 30th and then his local oncologist again on Jan.4th. We'll know by then if he will need a biopsy. I know from reading your posts on here often that these good Doctors have lots of tricks up their sleeves to fight this, so even if it is cancer again and not scar tissue (I realize scar tissue from the ablation is probably wishful thinking at this point), I know there will be another plan of action. I'll post more details as I get them. Staying positive as all of you do....((hugs-to everyone))
April
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Comments

  • pepebcn
    pepebcn Member Posts: 6,331 Member
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    Hi April, first of all hope this spots are anything but not
    cancer. Concerning to chemo in case Jim need it, hope not, probably will have Folfiri which is the most common option together with Folfox.That's more manageable than folfox and it's major issue are GI problems like diarrhea or nausea but manageable at least in my case!.
    Hope it helps, Any way, hope is just a false alarm, l pray for it!
    Hugs!
  • Nana2
    Nana2 Member Posts: 255
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    pepebcn said:

    Hi April, first of all hope this spots are anything but not
    cancer. Concerning to chemo in case Jim need it, hope not, probably will have Folfiri which is the most common option together with Folfox.That's more manageable than folfox and it's major issue are GI problems like diarrhea or nausea but manageable at least in my case!.
    Hope it helps, Any way, hope is just a false alarm, l pray for it!
    Hugs!

    Just got a copy of the
    Just got a copy of the radiologist's report and I won't read all the ugly details, but the IMPRESSION at the end of the reports list
    1. Worsening hepatic metastasis
    2. Areas of nodularity demonstrated within the lung, also suspicious for worsening metastatic disease.
    I just keep remembering Doctor Shoup at Loyola saying last time, "they (the radiologists) just don't understand what we do here." So I hope she will have a more positive outlook on this.
    Thanks for your Hugs and Prayers Pepe

    April
  • Lori-S
    Lori-S Member Posts: 1,277 Member
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    April
    I am sending best wishing and prayers to you and Jim. HUGS
  • pepebcn
    pepebcn Member Posts: 6,331 Member
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    Nana2 said:

    Just got a copy of the
    Just got a copy of the radiologist's report and I won't read all the ugly details, but the IMPRESSION at the end of the reports list
    1. Worsening hepatic metastasis
    2. Areas of nodularity demonstrated within the lung, also suspicious for worsening metastatic disease.
    I just keep remembering Doctor Shoup at Loyola saying last time, "they (the radiologists) just don't understand what we do here." So I hope she will have a more positive outlook on this.
    Thanks for your Hugs and Prayers Pepe

    April

    I hope so April!
    Keep strength!
    Hugs!
  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
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    Nana2 said:

    Just got a copy of the
    Just got a copy of the radiologist's report and I won't read all the ugly details, but the IMPRESSION at the end of the reports list
    1. Worsening hepatic metastasis
    2. Areas of nodularity demonstrated within the lung, also suspicious for worsening metastatic disease.
    I just keep remembering Doctor Shoup at Loyola saying last time, "they (the radiologists) just don't understand what we do here." So I hope she will have a more positive outlook on this.
    Thanks for your Hugs and Prayers Pepe

    April

    Keep the hope
    Dear April,

    I can only imagine how difficult all this is for you both, especially with the wait to see the doc at Loyola.

    I send prayers your way that the news from Dr. Shoup will help ease your minds and that she will be able to put together the best possible plan to get things under control.

    Hugs,

    Marie who loves kitties
  • JoyceSteele
    JoyceSteele Member Posts: 145
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    Nana2 said:

    Just got a copy of the
    Just got a copy of the radiologist's report and I won't read all the ugly details, but the IMPRESSION at the end of the reports list
    1. Worsening hepatic metastasis
    2. Areas of nodularity demonstrated within the lung, also suspicious for worsening metastatic disease.
    I just keep remembering Doctor Shoup at Loyola saying last time, "they (the radiologists) just don't understand what we do here." So I hope she will have a more positive outlook on this.
    Thanks for your Hugs and Prayers Pepe

    April

    sending hugs
    April, sending hugs and prayers for you both. We are here for you. Joyce
  • bruins1971
    bruins1971 Member Posts: 227
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    Nana2 said:

    Just got a copy of the
    Just got a copy of the radiologist's report and I won't read all the ugly details, but the IMPRESSION at the end of the reports list
    1. Worsening hepatic metastasis
    2. Areas of nodularity demonstrated within the lung, also suspicious for worsening metastatic disease.
    I just keep remembering Doctor Shoup at Loyola saying last time, "they (the radiologists) just don't understand what we do here." So I hope she will have a more positive outlook on this.
    Thanks for your Hugs and Prayers Pepe

    April

    Prayers coming
    Nana I wanted to say that I am sorry to see you going through something so stressful. I hope and pray that this will pass and that it's not as bad as you are thinking after reading it. We certainly tend to read something and fear the worse but hopefully this will not be the case and you will have better news soon.

    bobby in dallas
  • lisa42
    lisa42 Member Posts: 3,625 Member
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    Hugs
    Hi,

    All I can say is I'm sending cyberhugs to you and I am praying right now for any cancerous growth to stop- also that doctors will be positive and proactive in finding the best treatment approach.

    Take care-
    Lisa
  • lizzydavis
    lizzydavis Member Posts: 893
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    lisa42 said:

    Hugs
    Hi,

    All I can say is I'm sending cyberhugs to you and I am praying right now for any cancerous growth to stop- also that doctors will be positive and proactive in finding the best treatment approach.

    Take care-
    Lisa

    I am closing my eyes and saying a prayer for Jim.
    I am closing my eyes and saying prayers for Jim.

    Lizzy Davis
  • CherylHutch
    CherylHutch Member Posts: 1,375
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    Nana2 said:

    Just got a copy of the
    Just got a copy of the radiologist's report and I won't read all the ugly details, but the IMPRESSION at the end of the reports list
    1. Worsening hepatic metastasis
    2. Areas of nodularity demonstrated within the lung, also suspicious for worsening metastatic disease.
    I just keep remembering Doctor Shoup at Loyola saying last time, "they (the radiologists) just don't understand what we do here." So I hope she will have a more positive outlook on this.
    Thanks for your Hugs and Prayers Pepe

    April

    The Report
    Deep breaths. Both of you. Breathe in... breathe out. There ya go. Keep reminding yourself to do this... and once you have a couple of deep breaths under your belt, let's look at that report again... keeping a few things in mind:

    1) Think of Radiologists as scientists. They rarely have to actually communicate with patients (that's what our GPs and Oncologists are for), even if they end up being the ones that do a procedure on a patient. The patient is only there for the procedure... radiologists do not carry patient "caseloads". So the reports are not written with the patient in mind... if it were, it would be written in layman's terms with more thought going into describing what they've seen. So they are talking in scientific data terms --- "worsening hepatic metastasis". Well, it's true, the spots on the liver (hepatic) are larger, the spots are there because of a spread of colon cancer (metastasis), so since the spots are larger than they were in a previous scan (which they compare current scans to previous ones), then the cancer is worsening. Well, if the spots are growing, then you know growing is not a good thing... but it's not up to the radiologists to determine (or even know) if this is a treatable thing. Their job is just to read the scans and report what they see on the current scan and in comparison to previous signs. What this will mean to your oncologist is "Ok, the spots in the liver aren't shrinking, so we have to change our treatment plan" and that's when she will probably discuss the different treatments/chemos/plans that are out there. She will pick one and tell you why she thinks this is the best one for Jim right now and if it doesn't work, then will change to another. The bottom line, the plan is to shrink those puppies until they either are small and stable, or they can be removed.

    2) "Areas of nodularity demonstrated within the lung, also suspicious for worsening metastatic disease". Again, there they go with the scientist vocabulary. I'm not sure if they mean existing nodules are showing signs of growing, or if there is new growth in the lungs, which would indicate worsening metastatic disease. Either way, it means the chemo Jim was on obviously was/is not being effective, so it will be time to change chemos.

    I think up further, you were asking about Erbutix . That is definitely one of the chemos that is used for us with tumours in the liver and/or lungs. I'm not sure which chemos Jim has been on, or whether or not his oncologist has a specific plan in place. For instance, I did 12 cycles of Folfox (well, actually 10 with the oxyliplatin... couldn't do the last two cycles of that nasty oxy), then I was good for about 2 1/2 years with no chemo... even though I did have nodules in my lungs (nothing in my liver). This past spring, those darn nodules decided to start growing, so my onc put me on Xeloda (pill form of the 5FU part of the Folfox I was on before). She thought that I had been off chemo long enough that my system might have responded like this was a new chemo. It started to. After 3 months, the largest tumours had shrunk by 33%. This past 3 months... nada. Not only have they not shrunk any more, a couple of them started growing, even with the chemo!! Grrrrr!

    So, we are on to another plan. I'm on a break from chemo right now to give my system a rest... but starting in Feb, I'll be going on Irinetocan and we'll see how that works. If it eventually stops working, then we move on to something like erbutix, and then we'll try some of the combos.

    So, from an oncologist point of view... there are lots of combos and things to try. From a radiologist's point of view... they can only report what they see... not what they think the treatment should be or whether one chemo would be better than another for no reason.

    I know it's hard... but try not to read into what the radiologists say... and then assume the oncologists are going to say the same thing. Enjoy the holidays and know that when you go in to see the oncologist, you will be told what's next on the agenda. Meanwhile... Jim should rest, relax and refuel so that his energy and immune system will be ready for the next plan :)

    Cheryl
  • LivinginNH
    LivinginNH Member Posts: 1,456 Member
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    Nana2 said:

    Just got a copy of the
    Just got a copy of the radiologist's report and I won't read all the ugly details, but the IMPRESSION at the end of the reports list
    1. Worsening hepatic metastasis
    2. Areas of nodularity demonstrated within the lung, also suspicious for worsening metastatic disease.
    I just keep remembering Doctor Shoup at Loyola saying last time, "they (the radiologists) just don't understand what we do here." So I hope she will have a more positive outlook on this.
    Thanks for your Hugs and Prayers Pepe

    April

    As Cheryl posted, the

    As Cheryl posted, the radiologists opinion is just that, an opinion. I'm praying that your doctor will turn it around and give you some positive news. HUGS to you both, Cynthia
  • geotina
    geotina Member Posts: 2,111 Member
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    April:
    I'm sorry the news could not have been better. Jim sure has been through a lot, especially with the liver resection and then those nasties just come back. I know too well the "rug pulled out feeling".

    Well, regroup, meet with your oncs and get a new plan of attack going.

    You mentioned biopsy, if you are referring to liver biopsy, George just had those done. First round samples showed necrotic tissue, second round from different area showed that it was CRC mets progression. Onc wanted to make sure we were looking at CRC and not a new cancer so it is on to a new chemo next week for George.

    The only thing I know about Erbitux is the rash. Some get it, some don't and then some get it bad so if that is his new chemo, make sure you get something for the rash to stay ahead of it.

    Take care - Tina
  • AnneCan
    AnneCan Member Posts: 3,673 Member
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    April
    I am sorry about this. It is best to wait + hear what the onc has to say. I am glad you are staying positive, that helps a lot. Good luck + please let us know how things go.
  • Erinb
    Erinb Member Posts: 293
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    April,Your husband has many
    April,
    Your husband has many options left. Options are good!
    Erin
  • ktlcs
    ktlcs Member Posts: 358
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    Erinb said:

    April,Your husband has many
    April,
    Your husband has many options left. Options are good!
    Erin

    Erbitux
    My hubby was on Erbitux which was easy to tolerate, no neuropothy, nausea/diarreah etc. Jusxtyt stay on top of the rash. He got it badly in his eyes, but once we got a prescription for doxycline it became much more tolerable

    I wish you both the best

    Kathy
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
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    praying
    April,

    I'm praying the oncologist will have something more positive to offer. Hang in there!

    *hugs*
    Gail
  • LOUSWIFT
    LOUSWIFT Member Posts: 371 Member
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    SCANS
    In my experiences with cancer, radiologist have been wrong. I had a CT/Pet scan in March 2010 and the radiologist said NED looks great. Three months later I was on the operating table getting a tumor removed from my colon. Luckily, I had a colonoscopy that found a new tumor which I got my persoanl doctor to order due to rising CEA. My ONC went with the Radiologist report and informed me it was likely not cancer causing the surge in CEA. Surgeon said the caner was there at least two years over 2cm with three localized nodes involved. Guess the radiologist wasn't wearing his glasses that day. All the best Lou
  • LOUSWIFT said:

    SCANS
    In my experiences with cancer, radiologist have been wrong. I had a CT/Pet scan in March 2010 and the radiologist said NED looks great. Three months later I was on the operating table getting a tumor removed from my colon. Luckily, I had a colonoscopy that found a new tumor which I got my persoanl doctor to order due to rising CEA. My ONC went with the Radiologist report and informed me it was likely not cancer causing the surge in CEA. Surgeon said the caner was there at least two years over 2cm with three localized nodes involved. Guess the radiologist wasn't wearing his glasses that day. All the best Lou

    This comment has been removed by the Moderator
  • taraHK
    taraHK Member Posts: 1,952 Member
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    sorry and good luck and Erbitux
    So sorry the scan results were not more positive -- but hoping you get a more positive interpretation of it all when you meet with your dear onc.

    I haven't ever been on Erbitux. It is 'famous' for an acne-like rash (oh joy) but of course not everyone is affected similarly.

    Another thing to keep in mind is that, for folk who have a KRAS mutation, Erbitux is not effective (if I remember all this correctly). So, if it is possible to be tested for that mutation, that can be very useful information. (I am a mutant!)

    Good luck. Sending love and best wishes your way

    Tara
  • Nana b
    Nana b Member Posts: 3,030 Member
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    taraHK said:

    sorry and good luck and Erbitux
    So sorry the scan results were not more positive -- but hoping you get a more positive interpretation of it all when you meet with your dear onc.

    I haven't ever been on Erbitux. It is 'famous' for an acne-like rash (oh joy) but of course not everyone is affected similarly.

    Another thing to keep in mind is that, for folk who have a KRAS mutation, Erbitux is not effective (if I remember all this correctly). So, if it is possible to be tested for that mutation, that can be very useful information. (I am a mutant!)

    Good luck. Sending love and best wishes your way

    Tara

    There is hope..
    Hang in there, hope is there, just look around you...on this board. Hugs to you, try to rest some.