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.

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.


(14 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.

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.

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


(13 replies, posted in General Discussion)

Loved reading this.  Such wonderful news.  Congrats.

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...

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.


(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


(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

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.

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.


(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.

Lainy good to know. Thanks guys.


(26 replies, posted in General Discussion)

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

Thanks Gavin for your input. If u don't mind me asking how much were u taking daily?

Hi Julie. I totally agree with you about the aspirin being small on the scheme of things and in so many words my onc said that as well. She also said for me personally after chemo a baby one daily won't cause any alarming "why not" so once chemo is complete I will probably start. How are you feeling by the way? wink

Thanks again all. With the week off last week numbers bounced back to normal and nothing of importance was elevated. So that helps alleviate some of my anxiety. They also lowered my dosage of Oxaliplatin to help with platelets , counts, and side effects. I would imagine this could be common. I also brought up Melinda's story and the kind of immunotherapy that has been benefial for her. My onc hadnt heard of it but I'm glad I brought it to her attention. wink

I brought up the discussion of aspirin and cancer to my onc today. She said that the only benefit that is has proven as far as relating to cancer has been colon cancer.? She said she would recommend me to start taking a baby aspirin daily but only after I'm done with my chemo treatments. wink


(21 replies, posted in General Discussion)

Kris I am so happy to see and hear that Mark is starting to feel better and had a good day. wink


(4 replies, posted in Introductions!)

Hi Diana. Just wanted to extend another warm welcome to the site. Sorry about the diagnosis and that you have a reason to be here but this group of people and foundation has been such a gem and I hope you all get the care and support you need.


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

Susie this is awesome news. So happy for you. Congratulations hope u go out and celebrate . blessings.

My ONC not once. wink

Thanks again all for the support and responses. As my once and surgeon know I get very anxious about all this sstuff which I know is totally natural and normal smile but they are both assuring me that there is no reason for concern. My surgeon literally said "don't panic, there is no reason to panic." The once said the ca 19 9 is normal and don't worry about it going up and the absolute value right now as its still in normal range. So I'm gonna do my best and take their advice and trust them for now. Its comforting to hear that others too saw their numbers bounce around during treatment as well and sounds like a common and normal effect.
Lainy I will be coming thru this sued I just don't know when yet wink