I'm scared

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Nana2
Nana2 Member Posts: 255
edited March 2014 in Colorectal Cancer #1
Not sure how to do this. I'm scared. I have been reading the posts here and feeling so sad for so many of you. I'll start to respond to some of your posts and just get so sad and click out (sorry...I run away) or I'll start to write questions and then stop because sometimes the questions seem so trivial in light of what's going on in some of your lives (and ours) You know, you've heard them...questions about diet and poop and all the rest, and then someone's chemo stops working or a bad scan comes back and I'll erase. Forgive me for saying those questions are trivial (I know all questions are allowed here) because I know many of you have asked them too...I just feel overwhelmed today. I do think of all of you every day and pray when I'm not exhausted or running from all of this.
So anyway, this one's going to be long, because it helps me feel like I'm doing something productive to be here.

The Doctor told us today that the folfox obviously didn't work for Jim. The tumors are back and growing. The Doctor tried folfori with Erbitux two weeks ago and had to stop immediately because Jim had a reaction right away so he switched it to irinotecan or CPT-11. Today he told us he thinks we should add back the Avastin which was stopped because Jim had gushing nosebleeds. We stopped his plavix and have cut back a little on his coumadin. So we agreed to add it back to the mix even though it's risky. He couldn't receive his chemo today as scheduled because he had dirrhea so bad he couldn't do it, so we'll wait til next week. The Doctor said if the Avastin has to be stopped again we need to start looking at quality vs. quanity of life. I can't believe we're at this point already. Are we really at this point already??? We just came home, ate lunch and went to bed. We hug and then separate so I can go cry.
I don't want to push things on him that make him miserable, but I sure don't want to give up this fight either. Are we missing anything we should try? I'll try and give you a recap.
Oct. 2009 heart blockage diagnosed
Nov. 2009 Colorectal cancer found and diagnosed stage IV with liver mets
Nov. 2009 Heart stent placed
Dec. 2009 port placed and chemo with radiation started
Jan. 2010 six weeks on the chemo and radiation
Mar. 2010 Colon surgery was able to reconnect with no bag
May. 2010 Surgery at Loyola to remove right lobe of liver and ablate spots on left lobe
May - June infection on and off from surgery
July - Aug. recoup
Sep. 2010 Started folfox with oxi continuing through December when scans were done
Oct.or Nov. had to stop Avastin because of gushing nosebleeds and emer.cauterization
Dec. 2010 Scans showed all the cancer was back on his liver and growing
PET SCAN says numerous foci of increased tracer uptake in the liver with maximum
standardized uptake value as high as 14.6, corresponding to low attenuation lesions
seen on the CT portion of the study. The patient appears to be status post parial
hepatectomy.

A mass in the subcutaneous sissues of the right gluteal lesion of about 2 cm in
diameter is unchanged from the recent CT and is highly FDG avid.

The distribution of tracer elswhere is physiologic.

There are scattered densities in the upper and middle lobes of the right lung which
are not substantially different than on the recent CT and are associated with only
very low levels of FDG activity.

The distribution of tracer elsewhere is physiologic.

Additionsl findings on the CT portion of the study are unchanged from 12/10/10

IMPRESSION
1. Several hepatic metastases
2. Metastasis in the right gluteal subcutaneous tissues
3. Abnormalities in the right lung probably representing subsegmental atclectasis or
pneumonia. Followup is recommended to confirm resolution and thereby any underlying
neoplastic lesions


Jan. 2011 Started folfori with Erbitux...stopped because of reaction and switched to
irinotican.

Today Doctor says he wants to add Avastin back to mix or cocktail won't be aggressive enough. When Avastin has to be stopped it sounds like there is nothing left but clinical trials.

Any thoughts or input would sure be appreciated and thank you all for being here.

(HUGS)
April

Comments

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
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    Sorry
    So sorry that you both have been going through so much. Don't ever post (or type) something and then erase it. You might think it is trivial at the time, but who knows, maybe someone else out there that is just going on board might be wondering the same exact question. No question or problem or experience can ever be minimized. The treatmet that your husband is on needs to be one you both are comfortable with. Hope that this treatment works.

    Kim
  • lisa42
    lisa42 Member Posts: 3,625 Member
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    Hugs
    Hi April,

    As Kim said, please don't ever feel like what you want to say or ask isn't as important as someone else's. I'd say what you're going through is far from trivial.
    I wish I could reach out and give you a big hug. I'm sorry that I really don't have any advice, just know that I care, I'm thinking of you and Jim, and I'm praying too.

    Lisa
  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
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    Dear April
    Since Jim's doctor feels that if this next treatment is not tolerated that you may be at a crossroad with a major decision, you might want to consider contacting another major cancer center like Sloan or Anderson to see if someone there will at least review his records and see if they have any alternatives for you. Even the best of doctors don't know everything and there might be someone else out there with some other ideas.

    Even if staying with his current doctor, an additional opinion might help you both in any decisions you must make in the future.

    You don't need to be concerned about posting or not on others threads. You have posted often enough for all to know that your heart is with us all. We just want to make sure that you are ok, so if we inquire it is because we care, not because you are not commenting.

    As a caregiver, you have one of the most difficult jobs in the world...that of putting your own feelings and fears into a corner of your mind and heart...so that you can give all your support and love to Jim. Do you have loved ones or friends who are there to support you?

    I wish I had answers for you, but all I can do is tell you that we are here for you and Jim. We will do our best to help you through whatever may come.

    Hugs,

    Marie who loves kitties
  • Buzzard
    Buzzard Member Posts: 3,043 Member
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    lisa42 said:

    Hugs
    Hi April,

    As Kim said, please don't ever feel like what you want to say or ask isn't as important as someone else's. I'd say what you're going through is far from trivial.
    I wish I could reach out and give you a big hug. I'm sorry that I really don't have any advice, just know that I care, I'm thinking of you and Jim, and I'm praying too.

    Lisa

    April...........
    My first words are I am sorry that anyone has to go through the ins and outs , ups and downs of this dreadful disease....
    Now, to get down to business, Im not going to ask ages here, age doesn't matter, I sometimes thought it did but no none of us want to leave no matter how old or young we are, so we will bypass that question......
    Next, How do you feel about your Drs treatment options for your husband ? I was fine with my treatment regimes until I re occurred and felt that my onc was at his peak as to where his expertise went. I opted to take my Oncology treatment and consultations now to Vandy as well. I loved my first Onc, he was amazing in demeanor, ability, and allowing me to make decisions based on how I felt, but now, since my knowledge base has grown from this site I figured that my need for a move was imminent to my survival or at least to extend my life as long as possible. I simply felt that my Onc had run his course and it was time for me to move on.....
    There are options for the both of you to make and sorry but most are dependant on financial status, or the ability to travel if necessary. I do know that since you have the knowledge base and a computer that you also have the ability to find cancer center sites on the web and take exactly what you have written in the above post, copy it and paste it in to an email to the different centers that you think may give you and your spouse a different view or maybe a chance at a different treatment option...and make a note at the end of the email that a reply within a short period of time would be a welcome response, or simply call them and get the Drs nurse practioner to give you their fax # so that you can get it there quicker and with a little more personal touch to it. You will find that most all centers are very adept at making patients feel as comfortable as possible......Maybe try MD Anderson, or Vanderbilt-Ingram Cancer Center, or Sloan Kettering..sometimes a complete different change in environment and Drs and hospital regimens are all it takes for renewed hope and survival techniques.
    April, we all want to live forever, but I have concluded that when I become a burden to my family that I will not allow myself to be nurtured like a baby, or become something for my family to stay sad with. I will go to my maker and wait for my family to someday meet me there after their long lived lives come to a close...I want for them to have nothing but good memories of me, and they will...I think that you and Jim are close enough to know where you stand with everything, and if he wishes to spend his life as easy as possible then let him, but if he wants to fight then let him, as hard as it is for me to say, let him make this decision, and be ok with it no matter what it is, cause without proper attitude then treatment is a mute point...I will keep the both of you in my highest prayer concerns...in hopes that the two of you reach a mutual concensus...if I can help in anything at all let it be to accommodate the two of you in any endeavor or decision you make that I could maybe help with computer searching or simply just to hold the two of you in prayer so that all works out for you both.......Love, Hope, and Continued memories made...........Clift
  • Lori-S
    Lori-S Member Posts: 1,277 Member
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    April
    I am so sorry that the news wasn't better for you two. I'm not as experienced as others on the board so I will leave suggestions to them other than maybe a 2nd opinion? I'm not sure if you have done this yet. I do want you to know that you are both in my prayers and I hope that the treatment with avastin works this time. This is such a tricky disease and a heck of a roller coaster ride. I wish all the best for tou both HUGS
  • LivinginNH
    LivinginNH Member Posts: 1,456 Member
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    April dear, I just wanted

    April dear, I just wanted you to know that you're not alone with these feelings. I'm scared too. And, like you, I haven't posted much lately since it just breaks my heart to hear that so many out here are having such a hard time. I often feel that my words just don't do justice to how I'm really feeling. I wish I could just reach through this screen and give you a big hug. You and Jim are in my thoughts and prayers tonight. God Bless, Cynthia
  • CherylHutch
    CherylHutch Member Posts: 1,375 Member
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    So much to think about
    April and Jim,

    I'm not sure I can add much more than what everyone else has said. I don't have enough experience (ok, make that "no experience") with the American medical system, so not knowing how you all are set up insurance-wise, or if traveling around to other doctors is an option... I'm not sure how feasible it is to say "Why not seek a second opinion?" And if they don't have any answers, or any different answers, then "Why not seek a third opinion?" As far as I'm concerned, if you feel you are at your rope's end because one doctor says it's either this treatment or that's it... then you can seek as many opinions as you want because, what do you have to lose? It's quite possible that your current doctor only has a set few weapons in his arsenal, whereas another doctor might say, "Oh, no, no, no... I recommend Jim start this treatment immediately and then here's what our plan will be" and it may be a treatment he has not tried before.

    A lot of your medical report was over my head... I don't speak medical-ese very well. But in a nutshell, the summary I got was Jim was diagnosed with a heart problem, of which a stent was surgically put in which repaired that problem. So technically, we can say the heart is not currently an issue. Then he was diagnosed with Stage IV colorectal cancer with mets to the liver (hence why stage IV). Ok... there are lots and lots of folk on this board with colorectal cancer and mets to the liver, or mets to the lungs, or mets to both. So far, I see this as not unusual. He had treatment, of which he did react badly to the oxi, so that was stopped. Dec the scans showed all the cancer is back on the liver... and then the report goes into a bunch of medical garbly-talk.

    So, I guess my question is... the doctor is recommending that he go on the Irinotecan with Avastin. Hopefully, that combo will be good and not cause any nasty reactions... and if able to tolerate it, it might be just what Jim needs to beat those nasties right back. Obviously, as many of us experience... there are the nasty cells still roaming in our systems and when treatment stops, the beasts come back to haunt us. Hence a chemo is needed that we can individually tolerate, to hold the nasties at bay or even kill them off. And if the Irinotecan/Avastin does do it's job, that may put Jim back in the races where he might be eligible for surgery to cut out any remaining nasties in the liver. It doesn't sound like the lungs are a problem... what was found there sounds like it is pneumonia scarring... so really the nasties you have to focus on are in the liver.

    Yes, it's scary... and I hate it when any doctor says "You might want to start putting your affairs in order". Heck, I had an intern oncologist tell me, when they found the tumour in my kidney last year, "We have got to check you in the hospital, like last week. You have to have your kidney removed!" Ok, that's some pretty serious stuff! I went in expecting to get the results of a CAT scan, hopefully saying the small tumours in my lungs remain dormant and instead I'm told I have to have my kidney removed?? I looked at this intern in, what I'm sure could only be described as shock and said, "You've GOT to be kidding?? I have to have a kidney removed... do you not think you might be over reacting just a little bit here? Up until today, we didn't even know I HAD a tumour in my kidney... and now I have to say goodbye to it?" I actually started laughing, which I could tell he was not impressed with. I said, "No seriously... you do realize before I rush off to the hospital to have them take out my kidney and any other loose parts they might find, I am going to get a second opinion from my own oncologist, as well, from a kidney specialist." As it turned out, the kidney specialist/surgeon my oncologist referred me to said, "No way. You would not be in need of losing your kidney unless the tumour is over 4mm... and this one is under 1mm. It is a classic kidney tumour and will be so slow growing... it will never make it's way out of the kidney because you will be in discomfort long before it grows big enough to become a danger." And not only that, surgery is not the only option... RFA is, and that's the one we are going to go with, after I finish my current chemo I'm about to start for the nodules in my lungs. Now, had I taken this intern's word (he was a very nice, caring guy), hopefully the kidney surgeon would have stopped me before I got the kidney taken out... but was that ever a doom and gloom outlook. My own oncologist was on a Research sabbatical at the time, which is the only reason I was seeing this intern (haven't seen one since).

    Right now Jim is alive and feeling relatively good... so do not give up hope. Talk to more doctors... get more opinions... but never give up hope. Too many have looked like they were in dire straits and are still around and telling their stories :)

    Cheryl
  • AnneCan
    AnneCan Member Posts: 3,673 Member
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    (((HUGS)))
    Hi April,

    I am so sorry you are sad. We all feel that from time to time. I have a few thoughts for you:

    Please do not erase your posts if you feel your questions are "trivial". For me, even when tough news is being posted, the "trivial" stuff can help, because being able to answer a "trivial" question can make us feel like we are actually helping someone, rather than feeling helpless with really tough issues (although with the tough issues we want to support any way we can). We all care about you + Jim + want to help you if we can. Secondly, Jim is not out of options + the avastin may work really well this time; I am sure hoping so!

    I hope you have started to feel better. I am glad you did not erase this post! Take good care of each other.
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
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    Oh, dear
    Hi, April.

    I am so sorry about the news, and I'm sorry you're so sad, but it's so understandable. You and Jim have been through so much, and it's bound to be overwhelming. Please don't ever feel like you have to hold back here. Type in any thought you have! You definitely need to unleash some of these feelings.

    As for the decisions. they are are yours and Jim's, and I'm not well versed enough to really be helpful. My initial thought is, maybe alternative routes, since the chemo is so brutal for him. Just my take. I'll be praying that the right decision will be reached, and the two of you will be at peace about it.

    *hugs*
    Gail
  • thxmiker
    thxmiker Member Posts: 1,278 Member
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    Our thoughts and prayers are with your family!
    First. Our thoughts and prayers are with your family!

    Has he been checked for C Diff? It is a common bacteria infection from surgery.
    The reason I ask, is I have horrible diarrhea and I was found to have C Diff..

    C. Diff and MSRA are common bacterial strains that one gets in a Hospital. They react different in many people. So, thay are hard to diagnose. C Diff. is found only in 1 out of 3 tests. So, the first couple of tests could come back negative. Then C Diff. can take several antibiotics before they find the one that works for you. (your husband)

    Just a thought.
    Best Always, mike
  • hopeforcure49
    hopeforcure49 Member Posts: 111
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    You are not alone April
    We all get on this website to vent, inform and support each other through this journey. I'm sorry you have to go through this. Like Buzz said, I would research on internet and find other treatment options if you don't feel this is right for your husband. Ask questions, don't settle for what you have if you are not happy with the care. I live in Houston TX. and MD Anderson is a great place.. I don't know what is available to you, but I would consider other options. It may be something else going on with his system, that doesn't let him heal and catch up. If he had an infection and was treated with antibiotics this could have but his immune system even lower. Have then check his blood work for MRSA or Ecoli in blood this can throw things off. Sometime even if the WBc's(white blood cells) are low there could still be an infections without fevers. Just a little advice. Hope the new cocktail works for Jim. I'll keep you guys in my prayers. Blessings from Lourdes
  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
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    April
    April,
    You and Jim have been through so much. I am sorry this has been such a nasty disease for Jim and so many others.
    Please feel free to always ask any questions. We have all depended on the board for things like the right stuff for mouth sores or butt sores. We need to take care of each other in all areas.
    I hope Jim can stay on the Avastin and that it will work.

    I'll hold you in my prayers.

    Aloha,
    Kathleen
  • pepebcn
    pepebcn Member Posts: 6,331 Member
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    April
    April,
    You and Jim have been through so much. I am sorry this has been such a nasty disease for Jim and so many others.
    Please feel free to always ask any questions. We have all depended on the board for things like the right stuff for mouth sores or butt sores. We need to take care of each other in all areas.
    I hope Jim can stay on the Avastin and that it will work.

    I'll hold you in my prayers.

    Aloha,
    Kathleen

    Feel so sad for your worries , l hope and pray for
    a success with irinotecan, i been on that for a few months so feel free to ask
    anything you want!
    Hugs and God bless you!
  • Erinb
    Erinb Member Posts: 293
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    AnneCan said:

    (((HUGS)))
    Hi April,

    I am so sorry you are sad. We all feel that from time to time. I have a few thoughts for you:

    Please do not erase your posts if you feel your questions are "trivial". For me, even when tough news is being posted, the "trivial" stuff can help, because being able to answer a "trivial" question can make us feel like we are actually helping someone, rather than feeling helpless with really tough issues (although with the tough issues we want to support any way we can). We all care about you + Jim + want to help you if we can. Secondly, Jim is not out of options + the avastin may work really well this time; I am sure hoping so!

    I hope you have started to feel better. I am glad you did not erase this post! Take good care of each other.

    Dear April, Your husband's
    Dear April, Your husband's scan doesn't sound awful. I hope the Avastin works and that there is another plan. I wish I could say more. It is hard for me to face the realities of the disease.
    Erin
  • Nana2
    Nana2 Member Posts: 255
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    pepebcn said:

    Feel so sad for your worries , l hope and pray for
    a success with irinotecan, i been on that for a few months so feel free to ask
    anything you want!
    Hugs and God bless you!

    Thank you so much...all of
    Thank you so much...all of you... for your kind responses and especially your prayers. It helps so much when you're feeling scared just to know you're not alone. I'm so sorry we're in this awful club together, but I'm glad we have each other. I feel better...it's a new day...he feels okay right now. His diarreah is under control. I will look into the other hospitals mentioned and maybe if he is willing we will go for another opinion. I am also thinking about trying some alternative treatments and so whatever you got...juicing...accupuncture...I want to change his diet... but like I said I don't want to push things on him that will make him miserable either. I know that changing all these things hasn't worked for everyone. Do you think eliminating most sugar, red meat, coffee, fried foods will make a difference. I know everybody is different. But it's certainly worth a try if it will help. I don't want to mess up his very sensitive system too much either. Some of that stuff is overwhelming to me too, so keep it simple if possible. He is on accidophilus and vitamin B-6. That's about it.
    Our diet is not great. Coffee, Eggs and bacon or cold cereal...pbj sandwiches with chips and chocolate milk...or grilled ham and cheese..Meat potatoes and a vegetable (at least he loves vegetables)for dinner, sometimes pizza, burgers or long john silvers fist...you know, the typical awful american diet.
    Gotta go, my five year old grandaughter is here every morning for a few hours and she has run out of things to keep busy with....so I can't concentrate.
    Thanks so much for being there and taking time to respond.
    ((HUGS))
    April

    Clift- You wondered about his age, Jim is 66, I'm 55, married 36 years. The avatar picture of our hands was taken Oct. 20th on our 36th anniversary.
  • Buzzard
    Buzzard Member Posts: 3,043 Member
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    Nana2 said:

    Thank you so much...all of
    Thank you so much...all of you... for your kind responses and especially your prayers. It helps so much when you're feeling scared just to know you're not alone. I'm so sorry we're in this awful club together, but I'm glad we have each other. I feel better...it's a new day...he feels okay right now. His diarreah is under control. I will look into the other hospitals mentioned and maybe if he is willing we will go for another opinion. I am also thinking about trying some alternative treatments and so whatever you got...juicing...accupuncture...I want to change his diet... but like I said I don't want to push things on him that will make him miserable either. I know that changing all these things hasn't worked for everyone. Do you think eliminating most sugar, red meat, coffee, fried foods will make a difference. I know everybody is different. But it's certainly worth a try if it will help. I don't want to mess up his very sensitive system too much either. Some of that stuff is overwhelming to me too, so keep it simple if possible. He is on accidophilus and vitamin B-6. That's about it.
    Our diet is not great. Coffee, Eggs and bacon or cold cereal...pbj sandwiches with chips and chocolate milk...or grilled ham and cheese..Meat potatoes and a vegetable (at least he loves vegetables)for dinner, sometimes pizza, burgers or long john silvers fist...you know, the typical awful american diet.
    Gotta go, my five year old grandaughter is here every morning for a few hours and she has run out of things to keep busy with....so I can't concentrate.
    Thanks so much for being there and taking time to respond.
    ((HUGS))
    April

    Clift- You wondered about his age, Jim is 66, I'm 55, married 36 years. The avatar picture of our hands was taken Oct. 20th on our 36th anniversary.

    Its a beautiful picture........
    and ya'll eat like I do..........hehe.....in fact everything except I go for Captain D's instead of Long John Silvers...

    Prayers in multitudes for the two of you......you'll need it with the 5 year old as well.... :) ....Love to ya both, Clift
  • Nana2
    Nana2 Member Posts: 255
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    Buzzard said:

    Its a beautiful picture........
    and ya'll eat like I do..........hehe.....in fact everything except I go for Captain D's instead of Long John Silvers...

    Prayers in multitudes for the two of you......you'll need it with the 5 year old as well.... :) ....Love to ya both, Clift

    Calling Sloan Kettering, MD
    Calling Sloan Kettering, MD Anderson and Vanderbilt Ingram today for information.