1

(21 replies, posted in General Discussion)

Thanks all for your support.  I am in a better frame of mind now that things have "settled" a little.  MY surgeon came back to work and was quite upset when she found out my case was brought to the board while she was gone.  So she re introduced my case when she was back and brought it back to the board so she could be a part of the large discussion. (I love her)...her his is response to me that was written "here's the verdict:  one lesion completely disappeared.  One grew by possibly 1mm which is the size of a tiny pin head, and could also be a variable error.  She agrees there is nothing to worry about right now and should get a scan in 2 months instead of 3.  From the surgeons mouth as well "please tell Porter I am on her side and by her side every step of the way. Do not worry"
So this made me feel more at ease. i trust my surgeon with my life and take her words very seriously. So I am trying to put all this cancer stuff on the back burner for now and trying to just relax and enjoy my holidays and time with by 2 wonderful little kids (who also have birthdays within weeks of each other and Christmas this month) and savor all these moments while i can.  Again, thanks everyone for the support.  Happy Holidays to all.
Love and blessings,
Porter

2

(21 replies, posted in General Discussion)

Duke, thank you so much for you input and words. You are really helping me through this more than you know.  I have brought up the other ideas of PET, you know ONC said it's so small that she thinks activity would even show negative on a PET scan.  I have had MRI's all along and the team feels this is best to continue and compare.  I had such an awful experience the first time around being misdiagnosed and my mind trickles back and I start feeling those emotions of being so angry and scared.  I am trusting in the fact that I am in much better hands and as my surgeons assistant sent me via text the other day "the team is watching you under a microscope every step of the way, I've been through so much and to keep fighting, and never stop.  We are all fighting with you more than you know." After hearing that I felt more at ease and realized I need to trust and let go and regardless things will be okay.  I am trying to trust in what they say and they do know best.  I do realize  others have it off  worse and I just hate that any one of us has to deal with this disease, or any cancer of any kind.  But again, thank  you so much for your support.  I am going to do my darn best to enjoy this Christmas ( I really thought last year was going to be my last) and my 2 wonderful little kids, and try to put this on the back burner for now.  Hugs and blessings to everyone. Lots of love.
Porter

3

(21 replies, posted in General Discussion)

Hi guys. Need advice.  SO the multi team met.  They still aren't sure what we are looking at.  All blood work and ca 19-9 looks gorgeous.  Like I said the spot is 9mm.  However what they are telling me to do is wait.  I am supposed to sit and wait and we will re scan in 2 months instead of 3.  Should I accept this?  I asked about surgery and my onc said that well, it's in a bad spot. I think she meant or clarified this was due to my previous resection.  She said the surgery would again be extensive.  I am guessing they are saying no to surgery as of now because this could still be nothing and they are not wanting to open me up for such a surgery if there is no need.?  She also said as far as the imaging, this spot has no washout and is only showing up on one set of images (angles) rather than all angles including aerial and whatnot. And that is showing to be a positive aspect.  CC is not time friendly with us.  My surgeon who always looks at my scans has not had a chance to look at it yet but will as soon as she can and is back at the office (out of town).  But does this seem like a reasonable plan? Continue blood work, and wait for 2 months?  Ideas? Thoughts?

4

(21 replies, posted in General Discussion)

Hi all. it's been a while.  Well, I just had a follow up 3 month scan and again the same spots are showing up, but apparently one has changed its characteristics so my oncologist literally has said ...she doesn't know what's going on.  They have been saying scar tissue since these spots have shown up in June, and have assured me that nothing has been worrisome....until now.  Which i find frustrating because since these first popped up, I have asked well are you sure this is scar tissue, what if it's not!?  I started crying in the office and she told me not to jump the gun and worry too much yet (so much easier said than done).  She said it could absolutely be nothing, but could be something.  This spot has not changed in size and what they are looking at is about 9mm, so I take that as something positive.  All blood work looks great and wnl, but I am going to be devastated if this has returned.  I think the hardest part is being in limbo and not knowing what is going on.  She is taking it to the multidisciplinary team on Tuesday and I will be expecting a call that day to see what if anything happens next.  Trying to stay positive and holding on hope and faith to get me through.  This is not the news I wanted right before the holiday and I am trying not to get too ahead of myself because we don't know what we are dealing with yet, but of course my mind leads to the worst case scenario.  Just feeling scared, upset, and sad an no one local who I can really talk to and understands what its like to go through this.

Thanks. I am super bummed i can't attend. But I am a working woman again wink and that's a good thing. Otherwise I'd be right on this webinar.
wink

Marion, I had one more question.  Does size of tumor if removed during surgery predispose or indicate any likelihood of recurrence?
I totally forgot Ask Dr.Giles was a resource of this. So i definitely utilized that last night.:)
I am not able to attend the webinar, will notes and highlights be posted to this sight afterwards?
Thanks Marion,
Hugs,
Porter

7

(10 replies, posted in General Discussion)

Julie, you know smile that I struggle with this too.  I still just can't shake it a lot of days. Every little ache, nausea and pain I feel just makes my anxiety soar, and I assume the worst.  You know I realize looking back on my life I tend to do this often.  I have a hard time thinking positively in general (I don't mean to) but it is something I struggle with and it's a constant battle with me to change my train of thought. I just go into downward spirals.  I am right behind you and getting my next scan the first week of December. 
But I still try to change my thought process.  I finally went back to work, and I just started working full time, TODAY!  So that so far has been a great distraction from me.  I got to stay busy when I feel up to I know that's key as that really helps me stay distracted.  I will be thinking about you and feel pretty confident your scans will be good!  I have a good feeling!  So if I were to take advice from myself: try and stay positive, instead of thinking about the what ifs or the bads, I remind myself of my joys and what I am grateful for (things that make me laugh and smile), and stay busy when you feel like it, keep distracted.  Blessings to you.
Porter

HI Marion, I have a couple questions and I hope they deem appropriate and not too vague.   After my surgery I kinda felt like I lost my support team after I had been receiving care for many months, and kind of felt on my own..."just go on and live my life."  Which sounds great but for me was so much harder to do after I had my resection and adjuvant chemo.  I guess my questions are along the lines of if you do have surgery...
1)  What should you expect to feel emotionally and physically after having an extended resection, rouex en Y, etc? (Not necessarily right after but maybe months, even years down the road)  For me I felt like I was just kinda let go with not a lot of direction or expectations as to what I might feel and physically I have realized I might have a new "normal."  I was kind of expecting for everything to go back to how it was before I was diagnosed.  I guess just more in depth of what one might expect and experience.
2) Does diet play a role after surgery, should I avoid or confide in certain foods?
3) The latest on success and recurrence rates? 
4)  Should any dietary supplements or vitamins encouraged or discouraged?
5)  How often should bloodwork or lab tests be done?
6) Aside from drinking alcohol, other things we can do to try and preserve our livers the best possible way we can?
7) Are there any specific medications that someone shouldn't be taking after such a big surgery?

I might come up with more. I do feel like these are kind of dumb and I have heard answers from some docs on most this stuff, but curious what Dr. Kato has to say.  smile
Porter

Hi Angelmar, I wanted to respond too I am just not quite sure what to say or what to offer.  I too had quite the extended resection in January of this year.  My scans have been good so far, but they are starting to see 2 small lesions that have been on the last 2 -3 reports around my incision area that they are referring to as scar tissue and nothing that is worrisome.  So my question is the same as Marions, as far as do they think this is worrisome tissue that they are looking at? It sounds like you will be asking more questions on Wed.  Could it be scar tissue from the resection?  I don't know much about this and whether scar tissue grows overtime or not (a question I will need to ask my surgeon and onc) smile  So sorry I don't have  more to offer.  I wish you well and hope you get some answers you are looking for, then onward to head towards the direction you feel you need to go smile Blessings to you.
Porter

Julie, well good news on numbers trending to where they need to be smile  I feel ya.  You know Im months now post chemo and I am still considered anemic have a low hemoglobin and RBC.  My docs like to remind me how harsh chemo can affect certain peoples blood work and counts and as many months as i was on chemo, it might just take that long just to see certain numbers get back to where they need to be.  Nothing alarming, just a couple things for me that are a tad under normal range.  My liver enzymes bounced around all over the place during chemo too and a little after. Like your docs are trying to reassure you, I am almost certain nothing is worrisome. Mine have seen pretty stable the last couple of times since chemo has ended.  I will be thinking about you during scan time, mine is already coming up too!! I can't believe it!  Jan, will be a year for me since surgery! How time flies.  Take it easy, and take care.
Porter

11

(27 replies, posted in Members' Cafe)

Lainy, love this post from you... smile

I came across this article when CC.org shared it on FB.   Julie I agree with what you have said.  Duke, I really enjoy reading your posts (I know I don't respond of post often these days) but I still try to keep "tabs" on everyone.  smile
When I had my surgery in January I was considered multifocal; one main tumor and one satellite.  They were both removed and the main tumor was measured at 13cm and the satellite, 2cm. Hugs and blessings to all.
Porter

13

(5 replies, posted in General Discussion)

Thanks guys. These spots are tiny. 6mm they say. They've been on the last 2 scans same spot no growth and no post contrast enhancement. So I am being assured its nothing alarming and just scar tissue. Other who have had resections or surgery, did y'all have scat tissue or spots show up on your scans? These spots were not there my first scan 6 weeks after surgery.

14

(4 replies, posted in General Discussion)

Thanks for the replies.  And thanks for the input Marion.  I guess I just wanted to make sure that it's not out of the norm for me not to have another PET.  Onc and Surgeon (both look at all follow upscans) say there is nothing worrisome and don't feel a PET is necessary.  She also did mention that after the last year with chemo and my resecion that a PET might also give off false positives.  I am trying to trust in what they say.  I was misdiagnosed when this all started in 2009 and I just want to make sure all the t's are crossed and i's have been dotted. smile  I am confident in the MRI reading and interpretations and this is the imaging they have solely used since I was diagnosed.

15

(4 replies, posted in General Discussion)

Hi all. Hope everyone is doing okay given all of our circumstances
My latest scan looked good as she said there were 2,small spots same spots seen on the previous scan they haven't grown and are in the same place and they are calling it scar tissue. Blood work continues to look excellent. I still don't feel up to par and Im starting to realize I'll have to get adjust to what my new normal might look like. But here is my question. I have had one pet scan and this was at the time of diagnosis last July. I haven't had one since, even after surgery and all the chemo over the last year. I asked my onc about it and she said she doesn't think its necessary at this time. My question is this pretty Much the norm? To base everything just off my MRIs? I am kinda of surprised that I never got another pet scan even prior to surgery to see if there had been any spread and what not. And now while not trying to focus on it returning I do think about it as well as what if it has already spread elsewhere , how would I know? Based on current MRIs and bloodwork like I said everything looks fine. Just cuirous others thoughts and experiences with the pets. And if that is something I should pursuse even though the team doesnt feel its necessary. Thanks in advance and blessings to all.

16

(5 replies, posted in General Discussion)

Hi all. Hope everyone is doing okay given all of our circumstances
My latest scan looked good as she said there were 2,small spots same spots seen on the previous scan they haven't grown and are in the same place and they are calling it scar tissue. Blood work continues to look excellent. I still don't feel up to par and Im starting to realize I'll have to get adjust to what my new normal might look like. But here is my question. I have had one pet scan and this was at the time of diagnosis last July. I haven't had one since, even after surgery and all the chemo over the last year. I asked my onc about it and she said she doesn't think its necessary at this time. My question is this pretty Much the norm? To base everything just off my MRIs? I am kinda of surprised that I never got another pet scan even prior to surgery to see if there had been any spread and what not. And now while not trying to focus on it returning I do think about it as well as what if it has already spread elsewhere , how would I know? Based on current MRIs and bloodwork like I said everything looks fine. Just cuirous others thoughts and experiences with the pets. And if that is something I should pursuse even though the team doesnt feel its necessary. Thanks in advance and blessings to all.

Hi Serena, I had my resection in Jan. Clear margins and no lymph involvement. I chose to do chemo the gem ox regimen solely because it was a peace of mind for me that I knew I had done everything I could if anything ever came back, even though there is very little info on how effective asjuvamt chemo is for this cancer. That being said right before chemo started and after my surgery I felt pretty wonderful. For me chemo took a toll on my body this time around and I had a hard time with it and 3 months after completing my regimen my body is still taking its toll with side effects and low blood counts. Keep in mind everyone tolerates it differently including myself I has gem cis before surgery and tolerated it quite better.

18

(12 replies, posted in Members' Cafe)

Hi LAINY!  Yes things are good.  My blood work is awesome and though the last 2 scans have shown "spots"  which I really don't like reading on the report; my team tells me it's scar tissue and nothing to worry about.  These spots are in the same spot and not growing.  Onc says she would love to say that "nothing" would ever show up on my scans but given what my body has been through and the surgery, that will never happen.  So I am trying to trust in them that this is true and continue to go on with my days.  (If anyone has had similar experiences I would love to hear it).  smile  But my plans were to head there in the summer and that didn't happen.  I might be heading down around Christmas time.  When is everyone else planning on heading that way?  I think about everyone here daily and blessings to all.
Porter

19

(12 replies, posted in Members' Cafe)

Awesome news Julie.  And thanks for the info.  I still have mine and have been hesitant to get it out (which I never thought I would feel that way smile ) but plan on scheduling an appt soon to have it removed.  They have told me already that is nothing like when it was inserted and that it is a simple procedure they do in the office.  Which kind of made me stand offish a little bit but I feel a little more at ease after hearing your story. smile
Porter

Hi Darlene, I too wanted to welcome you to the site.  I too was diagnosed with ICC last July.  I started chemo and was told surgery would most likely never be an option.  Well I proved them all wrong and had a major resection in January and they removed 6 segments of my liver.  It sounds like you got a good team going for you but as others have said second and third opinions are very much encouraged.  You just never know what one might say compared to the other.  I wish you many blessings on your cc journey and sorry you had to find us.  You will find that this group is extremely helpful, informative, and supportive.  Many blessings to you.
Porter

21

(16 replies, posted in Good News / What's Working)

Hi Duke.  I did not have mets and my tumors were restricted to my liver.  Blessings to you.

Aw Julie, I am sorry your body is having such a difficult time.  I too wouldn't hesitate to go into the ER if you ever feel the need.  As far as the hemoglobin (and I know everyone is different smile ) but I think it can take quite some time for some of us.  Like I said my last infusion was the beginning of June and I had a low hemoglobin thoughtout my entire regimen, and as of today it is still low and not in range yet.  It is slowly increasing everytime I have my blood drawn, but I am still not within normal range.  I hope you are able to have a good weekend Julie and that you start feeling better soon.  I know how tough and what a toll this can take on you physically and emotionally.

Hi Julie, I understand all you are going through.  I had my last infusion back in the beginning of June, and now just starting to feel a bit better (having more energy, counts are slowly bouncing back to normal, etc)  It really takes a toll on our body as you already know smile On top of the surgery you had before this as our bodies are also trying to heal from that.  It sounds like you are starting to feel better.  My platetles, hemoglobin, and hematocrit were mostly affected during my Gemox regimen.  I too debated for a bit whether or not to complete my last infusion.  On a couple of occasions due to my side effects and blood work, they did reduce my dose on 2 different occasions.  Have you or your team thought of that?  Could that be an option?  Hugs to you.
Porter

Mine is Intrahepatic and I had an 18cm tumor in liver.  The only symptom I ever had was intermittent abdominal pain on my right side.  My pain was tolerable and I only found the pain got much worse after I started my first chemo regimen.

25

(16 replies, posted in Good News / What's Working)

Hi all.  Again, I have been off the site for the most part.  I finished chemo and with my last infusion dose lowered I am already starting to feel better.  I also had my second scan since my surgery in January and first scan since chemo.  My oncologist told me that it looked "pristine."  She said I am "comfortably in remission."  Not only that she said I can get my port out as soon as possible.  I left the office crying.  Part of me and I have mentioned this before, feels somewhat bad for posting good news as I wish everyone was able to be cured or in remission from this cancer.  At the same time I hope some find it a hopeful and inspiring story.  This time last year I was told I had a 18cm tumor and that surgery would most likely never be an option.  I can't believe that it has already been a year and so much as happened within this last year at times it's still shocking to me.  Thank you for all the continued support and I am grateful for all of you, this site has been an amazing support and resource for me since I registered last year.  Hugs an blessings to all.
Porter