They NEVER use the term "remission" so soon in my experience. They don't even say that for me!!! They just say after each scan that the scan came back clear. Or my CEA is within normal limits. Cancer friends of mine are told the same thing. My oncologist is VERY guarded. I don't know if it's regional or what, but I go to a big institution. Maybe some others can chime in who are in the US too and see what they are told.
I can't imagine that your BIL who went from "terminal with 6 months to live" is now "in remission." It doesn't make sense. They would tell him he's responding well to the chemo, etc. etc. as to not give him too much hope. Unless he's seeing a cr^ppy onc???
Anyway, my two cents may be worth just that!!
PS I think you can DEFINITELY hold out hope that the tumors are responding so quickly to the chemo. That is GREAT. But, I would have cautious optimism. Also, did I miss the surgery part??? Sorry if I did. I try to juggle all my friends on the board with my own stuff, and "non-cyber" friends! It can get confusing!
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I agree with James....it is great news that the tumours have reduced in size and that he has responded so well to the chemo. That is all very encouraging. But I do think it is too early to talk about remission. As James says, we do not hear that word very often and certainly not when there are still tumours present.
However, things are going in the right direction and your sister and BIL can be optimistic. All the best!
Husband dx July 2003, advanced rectal cancer stage 111C; myself dx July 2006 indolent lymphoma; husband dx February 2010, stage 2 prostate cancer.
I was wondering if that was the case.... When my mom said to my sister, "Tell Ruth the good news" and my sister used the word remission I was honestly dumbstruck.
And one of the first things is that they "misunderstood" what the doctor told them in order to have that good news.
My sister was even mentioning a month ago when "they retire to Florida" - - and they are only in their mid 50's.
Guess we know that Denial is a stage you go thru whether its grief over a death or grief over the loss of our health.
His oncologist was the same as my Dad's - and a highly respected oncologist here in the midwest. The Doctor was VERY direct with my mom when she asked the questions.
His daughter (my #1 niece & "surrogate daughter) is a radiology technician and very
skeptical herself about the remission talk. Wants to hope, yet knows the medical facts more than most.
If there is anyone else that has heard the words "remission" within the first few months of a Stage IV diagnosis I would like to hear from you too.
Thanks again, the prayer list is definitely a revolving door because you folks show up on it over and over again!
Ruth ~ Although it's wonderful news that your BIL is responding so well to the chemo, I must agree with the others as far as being overly optimistic in regard to a "remission". I don't think that an oncologist can definitely say one is in remission until a certain amount of time has passed after the full chemo has been delivered. It varies depending on which type of cancer one has, and I am unfamiliar with what it is for colon cancer since I do not know anyone who personally has had it. I definitely think that it is optimistic that your BIL is responding so wonderfully to the chemo so you can certainly count on Goody to continue in on the prayer chain....it's obviously working
I am glad to share in this good news with you....and a good attitude can often be mistaken for denial and has alot to do with good responses with cancer. There is definitely power in our mind and how we see ourselves in terms of fighting the big "C". Perhaps your sister & BIL have discovered this. Anyway...your cybertwin is here for you if you should need. Just checking in to see if you need a hug.....I'm sending some anyway
(((HUGS))) ~ Goody
Last edited by goody2shuz; 06-06-2005 at 06:45 PM.
Ruth ~ just checking in since it has been a while to see how things are going with your family. (Of course as you cybertwin I feel that special bond and am concerned about you as well ) Please let us know how you are doing and if you have any more newsto share. Of course, if you need to vent....Goody's always here.
Hello all. Sorry I haven't updated for awhile... We're somewhere around the 4 month mark and last Monday my brother-in-law had another round of exams..
He's had another 20% reduction in his rectal and liver tumors and the CEA is down to the low 100's (it originally was 1300+).
Now the discussion is with the surgeon who wants to go in and take out the primary rectal tumor, and the oncologist who would like to continue with the chemo while they are having so much shrinkage. He has to be off chemo prior to surgery I gather.
He is VERY tired. Sleeps alot of the time - from the chemo I understand.
Everyone else in the family is on kind of a holding pattern. We want to help, but there is really nothing any of us can do yet. We want to hope, but come from a family with a big medical background (one retired R.N., one Medical Records, one Radiology Technician, one Medical Librarian and me - at a funeral home which is for sure the far end of medical) and we're pretty realistic people.
Can anyone tell me if they were faced with surgery or continued chemo what their situation was and how it was resolved??
Thanks to all. Whenever I wonder where faith and caring and friendship has gone I just come here...
So good to hear from you. I'm glad your BIL continues to get the best from treatment. That's the general rule... keep going until you aren't getting much progress, and then have the surgery. Especially a rectal or colonic tumor. If it had spread to his liver and time was of the essence in removing cancerous tissue before it spread to a major artery, making surgery near impossible, that would be another story.
With that said, though, ultimately the decision is his and his immediate family's with his onc's opinions and surgeon's opinion to weigh. If he is tolerating the chemo well and it is doing so much for him, why not continue for a little bit longer? Sleeping, as you know is perfectly normal. There will reach a time where quality of life will be an issue too, and I think these things will naturally work themselves out for him and make the decision for him. He will know when it is time for surgery. And that is exactly what I would tell him if I were in your shoes. You are there for support regardless of his decision, as is the rest of the family. Continue to offer support however you can and know that things have a way of working out.
Hope that helps a little.
You know you always have a friend in me.
Husband was on oxlalipatin/5fu following bowel resection. He did eventually have 12 cycles but they stopped after 6 cycles as the mets in his liver had reduced significantly enough in order to perform resection. We were told then that the greatest amount of shrinkage of mets was in the first 6 cycles. I think they were worried in case he became chemo-resistant and lost the chance to operate on his liver. His final 6 cycles were given in an attempt to stop recurrence which the medical team had a hot debate over the value of this.
Thank you both -
My mom called me yesterday afternoon to say that they have decided to complete this round of chemo (til mid August I believe) and then do the tests again - if they turn out the same way, they'll do the surgery to remove the rectal tumor and have an ostomy.
The surgery scares me only because my Dad didn't weather the surgery/chemo mix well at all...
I can't tell you how much I appreciate the hand holding...
The surgery scares me only because my Dad didn't whether the surgery/chemo mix well at all...
I can't tell you how much I appreciate the hand holding...
Ruth ~ So glad to see your update. Goody must agree with Cancerdad!!! He's a smart cookie and a wonderful friend too Like he said, things have changed since your Dad and also everyone responds differently to given treatments. With those two known factors it's time to let go & let God. Your BIL is not your Dad and it seems that the oncologist and surgeon are keeping a pretty good eye on him and his response to treatment and timing the surgery accordingly.
I know that your deepest frustration comes from not knowing what to do....you are doing everything you can do under the circumstances but could do with less of the worry. As your cybertwin I feel your frustration and fear and want you to know that Goody's hand is here to hold as well.
Cancerdad is most correct in terms of quality of life. We must respect this when someone we love is sick. And your love & understanding as well as your strength as a family will be able to know when and if that decision is to be made. For now things look good and he is responding which is great. I will continue to hold your family in my prayers as you go through another round of chemo.
I just wanted to let you know that I am here....busy with in laws, teens, and best friends coming for a visit but Goody always is here for her cybertwin Just thought I would remind you of that.
((((HUGS)))) ~ Goody
PS ~ I know you have beeen down with hubby working long hours....if you get lonely just look for Goody and I will be happy to pass the time away.
Last edited by goody2shuz; 07-20-2005 at 02:53 PM.
I am just "verklempt" as they used to say on Saturday Night Live.
Can someone here flat out tell me if I'm being unrealistic??
I just found out that my niece who moved 3-4 hours away wants to have her parents (my brother & his family) come down there for Thanksgiving this year.
Every year since time began it has been at my sisters and brother-in-laws (the one who has rectal cancer).
This year may be the last we get to spend with him - or the first that my sister has to get through without him.
My sister-in-law just said she thought so to my niece - before even talking to my brother about it. He's torn now that his wife has pretty much said yes.
Holidays have always been special in my family. The year my Dad was having chemo we spent all of Thanksgiving with my family rather than heading over to my husband's family for part of it.
Am I wrong to feel so angry over what seems to me to be insensitivity at a time when families should be together?
(My apologies if this sounds like a relationship board problem - but this is something that I would really appreciate input on from my friends here who are battling colon & rectal cancer)
Thanks for listening (whew! I feel better anyway...)
Oh, Ruth....I know how you want everything to be special and full of family and love for your brother & law and sister with not knowing where things are going. Your niece without your even realizing it, may have been thinking the same by trying to take the pressure off of her aunt and uncle having to host the event & also have an oportunity to take their mind off of things and yet have the family together. Afterall, that is what matters most. I am assuming that everyone has been invited??? Or is it just her parents??
If that is so, I think that your brother should be the one to make the final decision on this. And I know it is a difficult one for him to make. How close are you to your brother??? I recall your sharing with us on the Relationship board how you have some problems with some of your in laws. I am guessing your SIL is one of them.
I think all you can do is talk to your brother and hope that he can explain the situation to his daughter and have her understand that he cannot be there under the circumstances. There are future Thanksgivings that your BIL may not be around for, that they can make it to their daughters.
I hope that everything works out so that this Thanksgiving can be one in which the family can be there for your BIL. I will pray that it will work out that way. Meanwhile lots of (((HUGS))) from your cybertwin who loves you lots ~ Goody
This is definitely NOT a relationship problem... it's a rectal cancer problem. The one thing I can offer for you... My wife and I ALWAYS did Christmas Eve... since before the kids 10 years ago. We gave it up 2 years ago, because we simply didn't have the energy to clean the house, cook, entertain, etc. My sister ended up taking over, and now does it since... this year will be the third (if she does it which I'm sure she will!) I think she thought she was doing us a favor just taking it over. We actually were relieved when she did, because we just didn't have the energy. I suspect this is what is happening with your niece. I think SHE THINKS she is doing something to help. And doesn't want to admit, or acknowledge, especially to your BIL that this may well be his last. She's just stepping up to the plate.
If you wanted to do it, or if your BIL and his wife are up for it then they should call your niece, or you should call and explain this is something you really wanted to do for your sister and her hubbie. Suggest that maybe the two of you could do it together, then work out the logistics. Keep it upbeat-- you know how important hope is in fighting this.