Update

Lori-S
Lori-S Member Posts: 1,277 Member
edited February 2011 in Colorectal Cancer #1
First let me say that I am so tired of posting not so good news and yesterday I kinda fell down that damn cancer blackhole a bit. I'm still processing and thinking things over. Good news/bad news ... No more FOLFOX for me .... ever .

One good thing though is it looks like I get to bring my son home today!!! woo hoo

I am just copying an email I sent out to some family and friends so that everyone can see my update. I'm really a bit tired of talking and thinking about it all right now but, wanted to let my family here at CSN know what is going on.

Copied from email:

Had a tough day yesterday. First had labs and visit with my oncologist. I can no longer receive the FOLFOX chemo due to my severe reaction on the last attempt. We discussed other types of chemo that are all less effective like Xeloda with Avastin, Folfiri, etc. Seems that when I was in the hospital with the hernia and obstruction the CT scan that was done showed a “thickening of the colon wall indicative of colon cancer tumor growth. “ So in spite of the chemo it looks like I have a new active tumor growing. Because of this and my CEA numbers the doc thinks that I probably have active disease either in my lungs or liver as well. We did a chest x-ray that showed a couple of suspicious spots on the lungs so I had a CT scan done and am waiting for the report. The abdominal CT that was done didn’t show anything on my liver but because I am allergic to the contrast dye the doc said that we won’t be able to see anything on the liver until it grows larger. Today I go in for a mammogram to cover all our bases. Because of my hernias and needing reversal surgery for my previous surgery, we are looking at possibly doing the surgery since I am now off chemo. If we do the surgery it will give the doc a chance to see what is going on better and see if there is active cancer in places that we can’t see because of not having the contrast dye. So, I am thinking things over … change chemo or do surgery and find out how things are really doing. In the meantime I am being scheduled for a colonoscopy to go in and take a better look at what is showing as growing in my colon. Not sure how soon we can get that scheduled as it usually takes months but the doc wants it asap.

After all that “good news” I went in to see Anthony and just as I came in the door they were preparing for his procedure where they inject antibiotics and an irritating solution into his chest cavity to make the lung cling to the chest wall. I am so glad I got there in time from my appointments. It was the most painful procedure and he screamed and cried. It was so tough to watch him in so much pain but, I was so glad to have made it to be there for him. I sat with him afterward for 2 hours holding his hand while he cried with the pain. Unfortunately, I had to leave to go get my lung CT scan but, I went back right after and he was much better. The procedure was so painful and they just kept shooting him with Morphine and giving him pain pills too. I felt so bad for him. If the procedure worked his lung will attached to his chest wall making it less likely that the lung will collapse again. Fingers crossed that it works! Poor guy … what an ordeal that was. Such a painful procedure. The doc was so happy when I walked in as he said that the procedure was very painful.

So that’s the latest from me. Just wanted to give everyone the update. I see the doc again in 2 weeks to go over whatever tests and scans are done by then. Am happy not to have chemo on Monday but, at the same time having to wait to see what tests say so can decide how to proceed next with my treatment. Yesterday the doc used the phrases that I’ve heard other patients say their doc gave them … such as “We can’t cure you, but with treatment may be able to give you another year or two since there has now been spread while receiving chemo”. Oh well … we shall see how things go. Have to tell you I am exhausted after yesterday’s ordeal but, really looking forward to the Mamo … NOT. I hate to have them because I always have bad spots that mean that I have to have ultrasounds and needle biopsies. Say a little prayer that it doesn’t happen this time. I’m so sick of all this medical stuff.

Hope everyone is doing well. HUGS to all

UPDATE: Just sprung my son outta the hospital!!! Yipee!

Comments

  • Sonia32
    Sonia32 Member Posts: 1,071 Member
    Awwww Lori
    Hugs I'm so pleased about your son, but you oh I wish (like I do for all my family on here, you included) you would catch a break. I hope your oncs keep on top of everything and they find the right combo for you. If it's ok I will keep you in my prayers, hugs again Sonia
  • pepebcn
    pepebcn Member Posts: 6,331 Member
    Sonia32 said:

    Awwww Lori
    Hugs I'm so pleased about your son, but you oh I wish (like I do for all my family on here, you included) you would catch a break. I hope your oncs keep on top of everything and they find the right combo for you. If it's ok I will keep you in my prayers, hugs again Sonia

    I pray for a solution for you and also for a fast recovery of
    Anthony! Hugs my dear friend!
  • pepebcn
    pepebcn Member Posts: 6,331 Member
    pepebcn said:

    I pray for a solution for you and also for a fast recovery of
    Anthony! Hugs my dear friend!

    Why he said he can't cure you?
    You still have different choices to try to kill the cancer even with an small met in the lung! i would Change the doctor,if this is his opinion!.
    Hugs!
  • jararno
    jararno Member Posts: 186
    Hugs Heading Your Way!
    Lori,

    I am so sorry that the Folfox hasn't worked well and that you are going through all of this.
    You are a very strong lady and I admire your attitude. Your son must be so proud of you. You are there for him when he needs you the most.

    Hopefully the docs will be coming up with a new, great plan of action. Hope the mammo goes easy! ( I need one too, but am kinda worried about the chest port. ) I sometimes think that all of these tests are conjured up to torture us by some evil villians!

    I pray that you have a good mammo without being called in again ( I usually get that too )

    It seems like whenever I get a test or proceedure done it starts a ripple effect and just keeps going and going. A break would be nice for all of us!

    Please try to relax ( I know it is hard ). Getting tests and waiting for the results are the worst.

    Take Care,

    Barb
  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    Dear Lori
    I am kinda with Pepe on this one...at least get another opinion. I know they get pessimistic when there is activity during chemo, but don't beleive that is a reason to stop searching for some one with more hope to offer.

    So very sorry to hear that your son had to go thru that awful procedure. Sure hope that it does what it should to keep the lung from collapse.

    Take care of yourself. You have been spread kinda thin here lately. Maybe a day at the spa would help, and there in Vegas you got lots to choose from.

    Hugs,

    Marie who loves kitties
  • Sonia32 said:

    Awwww Lori
    Hugs I'm so pleased about your son, but you oh I wish (like I do for all my family on here, you included) you would catch a break. I hope your oncs keep on top of everything and they find the right combo for you. If it's ok I will keep you in my prayers, hugs again Sonia

    This comment has been removed by the Moderator
  • Jaylo969
    Jaylo969 Member Posts: 824 Member
    Lori
    Hey Lori,

    I am so sorry that things are going all sucky for you. After reading some of your recent posts I suspected that you'd be off of Folfox soon. But...if it is making you sicker or isn't working then it is not what you need. There are other chemo meds and while Folfox isn't for you maybe one of the other meds will be. I know I felt like a failure when I was taken off of Folfox after 5 rounds...that is until some of my CSN friends talked at me and set me straight. I feel so bad that you are having to go through so much; seems like you have been dealt a double load.

    Lori we are all pulling for you, and as you know we pull hard. Hang in there and I hope & pray that you will get some answers and solutions to all of this soon. Thanks for thinking to post to us and hugs back at you and Anthony.

    Sparks already sent your way!

    -Pat
  • CherylHutch
    CherylHutch Member Posts: 1,375
    Hey Lori
    I'm soooo sorry to hear that your troubles are continuing to harrass you. You have been through so much, you need a break, girlfriend!!

    My heart aches for your son and the painful procedure he has had to go through... and it aches for you to have to watch him suffer through it, but with a little bit of luck the worst is over now and he will be on to the road of recovery.

    Meanwhile... I'm a little curious. Who told you that the other chemos (Xeloda, Avastin, Irinotecan, etc) and any combination of them, are less effective?? That is sooooo not what you will hear from a lot of oncologists... that yes, there are standard protocols that they may start most colon cancer patients on, but it doesn't mean the other ones are less effective. Some just have to be juggled around until they find the right combo that the patient can tolerate and that is effective with killing off/shrinking the cancers. So, please don't for a minute think, if you try a second or third or fourth chemo, that you are getting less effective treatment than someone else. FOLFOX doesn't work for everyone... but then there is no one chemo that works well for everyone otherwise we'd all be on the same medication :)

    I hope you can take some time to yourself and relax, rest up and not have to make any serious decisions while you are so tired.

    Huggggggs!

    Cheryl
  • idlehunters
    idlehunters Member Posts: 1,787 Member

    Hey Lori
    I'm soooo sorry to hear that your troubles are continuing to harrass you. You have been through so much, you need a break, girlfriend!!

    My heart aches for your son and the painful procedure he has had to go through... and it aches for you to have to watch him suffer through it, but with a little bit of luck the worst is over now and he will be on to the road of recovery.

    Meanwhile... I'm a little curious. Who told you that the other chemos (Xeloda, Avastin, Irinotecan, etc) and any combination of them, are less effective?? That is sooooo not what you will hear from a lot of oncologists... that yes, there are standard protocols that they may start most colon cancer patients on, but it doesn't mean the other ones are less effective. Some just have to be juggled around until they find the right combo that the patient can tolerate and that is effective with killing off/shrinking the cancers. So, please don't for a minute think, if you try a second or third or fourth chemo, that you are getting less effective treatment than someone else. FOLFOX doesn't work for everyone... but then there is no one chemo that works well for everyone otherwise we'd all be on the same medication :)

    I hope you can take some time to yourself and relax, rest up and not have to make any serious decisions while you are so tired.

    Huggggggs!

    Cheryl

    Hey Lori
    well ya...that just sucks! I so understand what you mean by sick of all this medical stuff...sometimes it gets to be just tooooooo much. Wish I could do something for you. I agree with getting another opinion. Why not? I think you have a lot of options for everything you mentioned. Lean on us while you rest and catch your breath.

    So sad the pain your son had to go thru but things sound good for a recovery for him.

    Keeping you in my prayers girlfriend. Take care.

    Jennie
  • Buzzard
    Buzzard Member Posts: 3,043 Member

    Hey Lori
    well ya...that just sucks! I so understand what you mean by sick of all this medical stuff...sometimes it gets to be just tooooooo much. Wish I could do something for you. I agree with getting another opinion. Why not? I think you have a lot of options for everything you mentioned. Lean on us while you rest and catch your breath.

    So sad the pain your son had to go thru but things sound good for a recovery for him.

    Keeping you in my prayers girlfriend. Take care.

    Jennie

    Lori.....
    You need a you day..........deep tissue massage, pedicure, manicure, hot tub, sauna, facial, a special pampering day just for you...There comes a time when "you" seems to be the only ones that never take the time and miss out on special things..and its the little things that make a big difference in just living or loving life...You have been through more in the last year or two than most have in their entire life....Your son is doing good now, his pain today is now over and he should be doing better everyday now...Plan a day just for you, and follow through with it, have someone keep check on the son and just take a day to relax, and just do absolutely nothing, allow yourself to catch up with you, its the very least you can do for yourself...Love to you sweetheart, buzz
  • Buzzard
    Buzzard Member Posts: 3,043 Member

    Hey Lori
    well ya...that just sucks! I so understand what you mean by sick of all this medical stuff...sometimes it gets to be just tooooooo much. Wish I could do something for you. I agree with getting another opinion. Why not? I think you have a lot of options for everything you mentioned. Lean on us while you rest and catch your breath.

    So sad the pain your son had to go thru but things sound good for a recovery for him.

    Keeping you in my prayers girlfriend. Take care.

    Jennie

    Lori.....
    sorry double post but its worth it if you take a break........buzz.....again
  • Lori-S
    Lori-S Member Posts: 1,277 Member
    pepebcn said:

    Why he said he can't cure you?
    You still have different choices to try to kill the cancer even with an small met in the lung! i would Change the doctor,if this is his opinion!.
    Hugs!

    Pepe
    I did call him on the "can't cure" attitude and he did agree with me that if there are resectionable tumors that cure is still possible. He's mostly looking at the fact that we know I have a fast and agressive growing cancer. I had a total work up just 2 years before my dx and there was nothing growing or showing back then and when I did get my dx the way the tumor had grown was quite agressive with only about a 2 year growth time. He's also concerned that there is such rapid growth in the colon with it only being 9 months since my surgery and all clear after that .... and that is while on chemo. I know what he meant. He isn't giving up hope, he's just trying to be as up front with me and I appreciate that. Who knows .... maybe I'm just not a FOLFOX girl and something else will work for me. I have confidence in my onc. I had 3 other opinions before I decided to go with him. He did say that treatment for the one to 2 years could be just the thing to open new doors in the meantime. He not being to fatalistic for me. I appreciate your concern. Thanks mate! HUGS
  • Lori-S
    Lori-S Member Posts: 1,277 Member
    Thanks Everyone
    I sure do appreciate you all being here for me. What a great group of people to call family. I just so tired of having to share not so good news and yesterday the new growth in the colon really caught me off guard. I felt that same feeling we get when we are first dx'd. You know where you seem to kinda check out and into another dimension? But, I'm just so tired of it right now and am kinda going to take a little break for a few days, get my kid home (tomorrow morning ... woo hoo) and just hang out around the house or wherever and take a little mental vacation from cancer.

    HUGS to everyone ... Love ya all so much.
  • TMac52
    TMac52 Member Posts: 352
    Buzzard said:

    Lori.....
    sorry double post but its worth it if you take a break........buzz.....again

    Hi Lori
    I know I dont know you that well but I just want to say I'm sorry. Your story just breaks my heart. I have been reading your post's and comments for a few months and know what you have been through and continue to go through with your son and your Cancer. I wish I could help but all I can do is say I'm thinking of you and saying a few prayers. You have been through the ringer and your so strong. You are uha power of example to me. Stay strong friend.
    Love, Tom
  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
    Lori
    Lori,
    I am holding you and Anthony in the light. I pray for some relief for both of you. I am so very, sorry that you and Anthony are suffering. I know how hard it is to watch our kids suffer and here you are doing that in the midst of your own struggle. I will continue to hold you in my prayers.

    Aloha,
    Kathleen
  • AnneCan
    AnneCan Member Posts: 3,673 Member
    Lori
    I am really glad you were able to get your son home. I am so sorry that both of you have had a rough time, + hope things will change for the better for both of you.
  • Buckwirth
    Buckwirth Member Posts: 1,258 Member

    Hey Lori
    I'm soooo sorry to hear that your troubles are continuing to harrass you. You have been through so much, you need a break, girlfriend!!

    My heart aches for your son and the painful procedure he has had to go through... and it aches for you to have to watch him suffer through it, but with a little bit of luck the worst is over now and he will be on to the road of recovery.

    Meanwhile... I'm a little curious. Who told you that the other chemos (Xeloda, Avastin, Irinotecan, etc) and any combination of them, are less effective?? That is sooooo not what you will hear from a lot of oncologists... that yes, there are standard protocols that they may start most colon cancer patients on, but it doesn't mean the other ones are less effective. Some just have to be juggled around until they find the right combo that the patient can tolerate and that is effective with killing off/shrinking the cancers. So, please don't for a minute think, if you try a second or third or fourth chemo, that you are getting less effective treatment than someone else. FOLFOX doesn't work for everyone... but then there is no one chemo that works well for everyone otherwise we'd all be on the same medication :)

    I hope you can take some time to yourself and relax, rest up and not have to make any serious decisions while you are so tired.

    Huggggggs!

    Cheryl

    Per cheryl
    My Onc at USC Norris referred to each protocol as bullets in a gun, and as a Stage IV I should expect to use all of them. None is more effective, but each has it's own set of side effects. As to Xeloda, it is just another form of 5FU, and you may tolerate it better (I do ok with the bag, but can't tolerate the pill). One of the studies I read claimed Xeloda and Oxy was more effective than 5FU pump and Oxy...

    Still, I agree with Buzz: take a day for yourself, no question you deserve it!
  • lisa42
    lisa42 Member Posts: 3,625 Member
    Lori
    Hi Lori,

    Glad to read your update that your son is out of the hospital! I know it must have been horrible to watch him be in such pain. My heart goes out to you- enough is enough!
    I am praying for you and will not stop.
    Take care, my dear.

    Hugs,
    Lisa
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    Lori-S said:

    Thanks Everyone
    I sure do appreciate you all being here for me. What a great group of people to call family. I just so tired of having to share not so good news and yesterday the new growth in the colon really caught me off guard. I felt that same feeling we get when we are first dx'd. You know where you seem to kinda check out and into another dimension? But, I'm just so tired of it right now and am kinda going to take a little break for a few days, get my kid home (tomorrow morning ... woo hoo) and just hang out around the house or wherever and take a little mental vacation from cancer.

    HUGS to everyone ... Love ya all so much.

    take a little mental vacation from cancer
    hi Lori,

    I am sure Anthony appreciates your presence, his treatment sent shivers through my spine.
    Its so great he is home and what a wonderful hopeful distraction he maybe be for you. I hope your well enough to indulge yourself and him as most as circumstances permit.

    Thanks for sharing your cancer news, your honesty and that of the forum is precious.

    I firmly believe a load shared is a load lightened, so yours is being carried in many peoples hearts, mine as well.

    Please try to hang in there!! I pray some hope and good results are just around the corner. Until then I hope you can find some peace of mind, which I think you said so well by "take a little mental vacation from cancer"

    love and prayers,

    Pete