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wolfen
wolfen Member Posts: 1,324 Member
in Colorectal Cancer #1
Hello All,

I spoke to JBG tonight. She had returned from seeing her onc today with more distressing news. He was to decide if, when, & what type of chemo she will be on. Since pet scan in February, she has been told that she had 3 small spots on one lung. Supposedly that had not changed on June cat scan. Now, October cat scan following liver resection shows 5 nodes, the first four??? on report stating increasing in size from previous scan and one new one. Report refers to right lobe, left lobe. Is this right lung, left lung or is it right lobe, left lobe of the same lung since I learned from the internet tonight that lungs have more than one lobe? We are frustated that the information is hard to interpret or incorrectly given to her the first time. I told her to call and get a copy of the June scan for comparison purposes, especially since this onc told her she was inoperable before the liver resection. She has been told also, I believe, that she has the KRAS mutation. Of course she is concerned that she can't start chemo again until next onc visit on November 7. As the tumors grow, she has to wait until she has gained strength from the liver resection. I think she said she will be on Irinotecan, Avastin, and Xeloda(pills). It breaks my heart that I am so far away from her and can't be more helpful, and she is so tired from it all and not being able to trust what she's told.

I'm sure she'll be posting when she feels up to it.

I really don't know much about the KRAS mutation except that it doesn't respond to certain chemo drugs.

Any one with insight on how to interpret this report, please chime in.

My best to all of you,

Wolfen

Comments

  • plh4gail
    plh4gail Member Posts: 1,238 Member
    #2
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    What I know from nursing is
    What I know from nursing is the right lung has 3 lobes and the left lung has 2 lobes. This allows room on the left for our heart. But I don't know that the lobes are called left or right on each lung. Any help in that way?

    Gail
  • lisa42
    lisa42 Member Posts: 3,625 Member
    #3
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    KRAS mutation
    Hi,

    People with the kras mutation (I'm one), don't respond to Erbitux or Vectibix. Other chemos are not affected by it. There are actually some clinical trials being done on people with the kras mutations still taking Erbitux along with something else (I forgot what it was), so they are discovering that some kras mutated people who show another certain genetic expression (they would have to test for), still may be able to benefit from Erbitux and whatever this other drug is together.

    I'm sorry Johnny Be Good had such difficult scan results that were so difficult to interpret. That is frustrating.

    My prayers for her recovering well from the liver resection and for clarity in finding out what the results really mean.

    Lisa
  • wolfen
    wolfen Member Posts: 1,324 Member
    #4
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    lisa42 said:

    KRAS mutation
    Hi,

    People with the kras mutation (I'm one), don't respond to Erbitux or Vectibix. Other chemos are not affected by it. There are actually some clinical trials being done on people with the kras mutations still taking Erbitux along with something else (I forgot what it was), so they are discovering that some kras mutated people who show another certain genetic expression (they would have to test for), still may be able to benefit from Erbitux and whatever this other drug is together.

    I'm sorry Johnny Be Good had such difficult scan results that were so difficult to interpret. That is frustrating.

    My prayers for her recovering well from the liver resection and for clarity in finding out what the results really mean.

    Lisa

    Lisa and Gail
    Thanks for your replies.

    I guess we'll just have to wait and see what the June scan report was. I think JBG thought he was talking about both lungs which, I guess, requires a more agressive plan. I know she is really down right now, but as all of you do, she will rally and fight again. It just becomes a little harder each time.

    Gail, I hope your daughter will check out good tomorrow. I also thought of an abcess, but someone had already mentioned it.

    Lisa, have a really great time on your trip.

    I'm afraid the only trip I'll make is a quick one up to the cabin after hubby's doctor appt. to drain up the plumbing. Mother Nature tricked us again. There's unexpected snow and freezing temperatures predicted there for Thursday so I hope we can catch it in time. Busted pipes would be a real mess.

    Luv,

    Wolfen
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    #5
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    That sounds very confusing
    That sounds very confusing to me as well. It's a good idea to get the last report to use for comparison, it might help define it better. One thing she can always do is request another appointment with her onc and sit down and go over any questions or concerns in detail, so that she will understand the ramifications of this latest report.

    I hate to see her suffering so. Seeing progression in any form does take the wind out of our sails. Complicated by the fact, that she is just out of surgery. I know she is frightened and upset at this latest news. Who wouldn't be?

    I don't have any magic words, only for her to keep digging for info with her doc so that she understands what just happened and what she is up against.

    Lisa covered the KRAS question you had, and I find it interesting that she mentioned that a certain gene expression might make Erbitux or Vectibix available for some mutant patients. That would give J an extra bullet in her gun.

    Wishing both of you the best and wish I could have been of more help. Just wanted to reach out and say hello to you both. Keeping you in good thoughts.

    -Craig
  • Kenny H.
    Kenny H. Member Posts: 502 Member
    #6
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    Sundanceh said:

    That sounds very confusing
    That sounds very confusing to me as well. It's a good idea to get the last report to use for comparison, it might help define it better. One thing she can always do is request another appointment with her onc and sit down and go over any questions or concerns in detail, so that she will understand the ramifications of this latest report.

    I hate to see her suffering so. Seeing progression in any form does take the wind out of our sails. Complicated by the fact, that she is just out of surgery. I know she is frightened and upset at this latest news. Who wouldn't be?

    I don't have any magic words, only for her to keep digging for info with her doc so that she understands what just happened and what she is up against.

    Lisa covered the KRAS question you had, and I find it interesting that she mentioned that a certain gene expression might make Erbitux or Vectibix available for some mutant patients. That would give J an extra bullet in her gun.

    Wishing both of you the best and wish I could have been of more help. Just wanted to reach out and say hello to you both. Keeping you in good thoughts.

    -Craig

    Did they tell you the size
    Did they tell you the size of the spots? My last scan showed 2 nodules on lung (2mm) Onc said so small not concerned at this time.
  • mom_2_3
    mom_2_3 Member Posts: 953 Member
    #7
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    Difficult
    I have always found it hard to read radiologist reports but I do get one from every single scan so I can refer back to them later on. I have read a couple of items in them and I'm like "what the hell" or "where did that come from" and then a quick discussion with my oncologist clears it up and I'm ok again.

    Can she schedule an appointment before November 7 to review her scan results with him, item by item? When was her liver resection? I was back to my chemo 4 weeks after my liver resection. Seems like a good amount of time will have passed before she is able to start chemo again. I would have her ask the doctor about that and why the long delay.

    Amy
  • Sonia32
    Sonia32 Member Posts: 1,071 Member
    #8
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    Awwww
    Wolfen sending both you and Johnnybegood hugs and love.
  • lesvanb
    lesvanb Member Posts: 905
    #9
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    Hi Wolfen
    How awful to not get good info with all that's going with the JBG's surgery, which lobes, liver or lung. Holding you both in my heart.

    The KRAS mutation on line 13 or 14 I believe, and it allows the person to take Erbitux. One of my medical oncs, who is the aggressive treater with chemo, has said that I should be tested for that particular gene if chemo becomes the next choice. I am KRAS mutant.

    all the best, Leslie
  • wolfen
    wolfen Member Posts: 1,324 Member
    #10
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    lesvanb said:

    Hi Wolfen
    How awful to not get good info with all that's going with the JBG's surgery, which lobes, liver or lung. Holding you both in my heart.

    The KRAS mutation on line 13 or 14 I believe, and it allows the person to take Erbitux. One of my medical oncs, who is the aggressive treater with chemo, has said that I should be tested for that particular gene if chemo becomes the next choice. I am KRAS mutant.

    all the best, Leslie

    Thank You Everyone
    Thanks for your replies. I believe the delay in chemo centers around possible bleeding issues when taking Avastin. Not sure if another appt. is a possibility because it's a 200 mile round trip for her.

    I just worry that even though the surgeon and onc are across the street from each other, they are never on the same page as far as treatment goes.

    I'll just sit on pins and needles until she gets that June report and then we'll go from there.

    Luv,

    Wolfen
  • maglets
    maglets Member Posts: 2,576 Member
    #11
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    wolfen said:

    Thank You Everyone
    Thanks for your replies. I believe the delay in chemo centers around possible bleeding issues when taking Avastin. Not sure if another appt. is a possibility because it's a 200 mile round trip for her.

    I just worry that even though the surgeon and onc are across the street from each other, they are never on the same page as far as treatment goes.

    I'll just sit on pins and needles until she gets that June report and then we'll go from there.

    Luv,

    Wolfen

    wolfen
    ahhh I have no great advice....I am sooo sorry to hear about the lung...that pretty much thoroughly stinks....

    it does take some time to recover from that liver surgery....seems like a long wait but maybe that's just for the best....

    sending both you and Johnny all my best love and hugs.

    maggie

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