1

(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.

2

(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.

3

(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.

4

(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.

6

(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

7

(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

9

(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.

13

(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

Hi Trish, I sent you an email, my post was kinda long.  I was told in 2009 I had hemangioamas and had scans every six months.  They watched them grow (which I have been told hemangiomas don't even typically grow at all significantly) and eventhough everything in my body told me something else was wrong, I was told not to worry. I was diagnosed with ICC last July.  I went into more detail in my email so if you have any questions please feel free to ask.  smile Take care.
Porter

I am over the moon for you guys Kris.  Congrats on all the wonderful news.
Porter

16

(13 replies, posted in General Discussion)

Loved reading this.  Such wonderful news.  Congrats.
Porter

Hi all. I know I haven't posted much lately.  Treatment has been tough this time around physically and emotionally.  I had my last treatment of gemox today eventhough my platelets were at 80 (this surprised me).  I was kind of hoping to be pushed back a week.  But it's done for now and now as most of you are familiar with, I wait...I wait until the next step which will be a scan in 2 weeks.  I have had a lot of pain on my ride side.  Those who have had resections, (Kris, I am curious about Mark) have you experienced pain months after surgery?  It's hard to determine whether it's chemo, surgical, or what I constantly worry about reoccurance.  Onc says everything appears to look great in my numbers and physical exams (I know scans are the only way to be certain).  Aside from Platelets all numbers look really good and tumor marker is still within normal range.  .  Emotionally, I am a wreck and seriously debating an anti depressant as most of my emotion distress I believe is due to physically not feeling well and constantly being in a state of worry.  I'd like to ask all of you what you guys do to cope and try and just live life to the fullest day to day.? How do you get the world of CC out of your head and mind and take a break? I get so angry at myself because I know how blessed I have been  and I hate that I feel stuck in a rutt and in a constant state of panic and worry.  I have been thinking about joining a local cancer support group that I can attend in person in my town to be around others who are familiar with this and can relate.  I don't want to sound like I am complaining, but right now I just feel kind of lost as of what to do...I know I should be celebrating...
Porter

Julie, I am so happy that you had a much more pleasant experience this time and it seems like you have met your match with your new onc.  I think I have mentioned to you that I have the same problem with my port.  Sheesh I started chemo originally last August and it is still finicky (not as bad as it was) and at times it still take a while for it to draw blood.  It's the first thing I let the nurses know... that my port is stubborn and finicky. It is pretty well known around the floor that it can be a stubborn little thing smile I hope you continue to feel well with this round and that things and side effects go smoothly for you.  Hugs.
Porter

19

(11 replies, posted in General Discussion)

HI and welcome to the site. I too was diagnosed with intrahepatic cholangio and I had my surgery in January and a 13cm as well as a satellite tumor was removed and. They were able to achieve clear margins and no lymph node involvement.  I am currently going through adjuvant chemotherapy and I started about 7-8 weeks post op.  I hope he continues to have a well recovery and please feel free to ask my any questions.  smile
Porter

20

(24 replies, posted in Members' Cafe)

Just so I am clear and I am a little confused by all this. This registry is the same study through Mayo correct?  I did sign up for that and received a hefty packet in the mail and the next steps I am supposed to complete to be a participant. smile
Porter

Caroline agreed with all that has been said.  Beautiful post yet heart wrenching as well.  Bittersweet as I would say.  Last year I went through this with my mom (she has stage 4 lung cancer) and she held on strong to the very end, and in the end she was surrounded by those that loved her and all we wanted was for her to be comfortable and pain free, and thank the Lord she was able to achieve that and pass quite comfortably and calmly.  So I completely understand what you are going through.  SO happy that you guys get to have these moments with her and the discussions, and sending you and your family lots of love and blessings.  Hugs.
Porter

Thanks Susie.  She also told me that it has only been proven for colon cancer smile  it is something I might try when I am done with treatmentb (chemo) and said go for it, a baby aspirin.  I will be asking my surgeon and my PCP to get their opinions as well.

Julie, I am sorry you are having a hard time.  Sounds like you are going through a lot all during the midst of also finding new docs and such.  I have also had problems with them accessing my port, a lot of the time it takes forever for blood to draw and they often have be turn head, lift arm, cough, deep breathe, do a little dance smile  This became almost an everytime infusion occurrence and I remember they mentioning at some point they were going to scan me to see if they could figure out why mine was so finicky.  Is this an option for you?  When my fluids go in now, I wouldn't say they sting, but I do get almost a "stinging" like sensation but it goes away in seconds, very fast and I don't feel anything "weird" after that.  I hope you start feeling better soon and on the mend to heal all your wounds.  Hugs and blessings to you.
Porter

23

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

Oh what wonderful news!  I am so happy Mark is on the mend and feeling better! Hugs and blessings to you both.
Porter

Lainy good to know. Thanks guys.

25

(26 replies, posted in General Discussion)

Lainy! Glad you're back and hope you starting feeling wonderful soon. Hugs to you my friend.
Porter