pfox2100
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My tumor marker went up too but still low and in reference range. It still makes me anxious to know liver function and now ca 19 9 have all gone up eventhough everyone is saying no reason for concern. I am also somewhat puzzled that the first regimen of gemcis when I started treatment last August always showed a downward trend, and now with the gemox (all numbers were normal before treatment) shows an upward trend and this time we don’t even know if there is anything negative that the chemo is attacking. I do realize all chemo regimens are different and obviously can affect us each differently.
KrisV, I hope Mark’s numbers looked okay today and that he is having a decent day. KrisJ, thanks for your input
PorterThanks Kris your response made me feel better than the docs telling me not to worry. Ironically my bilirubin too has been low the entire time and has stayed consistently low. I am also hearing you say that if my ca 19 9 (which I should get tom or the next day) comes back a little higher (last one was 11) that I shouldn’t jump the gun and freak out about that either necessarily.
How is Mark doing by the way? I hope he is on the mend and feeling better…
PorterHi Julie, sorry you are having another set back. I hope this gets resolved quick and that you feel better soon.
PorterOh Kris I am so sorry you both are having to go through this difficult time. I don’t have experience on this and can’t say much but I do hope he feels better soon. As you know I live in Oregon and we have the medical marijuana as well. I must say for me it has helped specifically with appetite and sleep. Hugs and blessings to you both.
PorterHI Duke,I too enjoy my pints. I live in an area well known for micro brews and breweries and have often wondered the effects or burdens this has/had upon my liver. Though post op my instructions have been clear: 1 drink allowed per week and my surgeon told me to “savor” this moment. pre surgery my onc would basically say don’t over do it, and I didn’t. I am curious if there is any research on this.
Sorry Julie that u had some uncomfortable reactions. I meant to add that I did not have any edema or swelling while I was on this regimen. Glad u feel a little better today.
PorterUnfortunately I was misdiagnosed originally in 2009 when they found a small lesion and dx me with a liver hemangioma (they scanned me every 6 months to follow up on this and it continued to grow and grow and I was told not to worry) Last July I went into the ER for pain thinking the hemangioma might have burst (as I was told this could be a possibility). The ER doc told me he really didn’t think this was a hemanioma and to follow up with my GI. Next thing I knew my ca19 9 was slightly elevated, my alk phos was slightly elevated and was immediately referred up North to OHSU. Things moved pretty quickly from there. More scans which has shown significant growth. Two biopsies on the liver. First one came back normal, non malignant. Second I was diagnosed with cholangio. The only symptom I have had throughout all of this is some abdominal pain.
Linda I too have completed all of this and thank you for this info. At 34 this task at the time felt very wrong and difficult for me to do, but cancer or no cancer…I am glad that I did this and it is important and vital info for me and to those around me. I agree it is a big relief but also a difficult task to complete while you are going through it. It wasn’t easy.
PorterI am glad you all got those couple years with your mom but sorry to hear about her passing. Hugs and blessings to you.
PorterHi Steve, yes wonderful to hear that they were able to remove it and find it when they did. But sorry you had to learn about the diagnosis. I just turned 35 and too have been healthy throughout my life. My tumor was quite larger and I did have a resection in January where they did most likely the same or a very similar surgery it sounds like your fiancee is going to have. They removed almost 80% of my liver, gallbladder, rouex en y, lymphs, etc. Do you have any specific questions about the surgery or post op? There is a lot of info but I am not quite sure what kind of info you are wanting
Hugs and blessings to you guys.
PorterHi Julie I wanted to pitch in and don’t know if you have started chemo yet. I was on gem cis before my resection in jan. I was on this regimen for about 6 months. As you mentioned you are very aware that all of this effects each individual different, for me I tolerated the regimen well. Yes it did get more difficult the farther treatments went out. That being said I still tolerated it quite well and it didn’t interfere with my daily life often. My biggest side effects were slight fatigue and some nausea. I too travel a couple hours to Portland to go to all my appts and chemo and just now will start getting my blood drawn in my town before I am supposed to have chemo the following day just so I don’t have to take an unnecessary trip if needed. Gem Cis did effect my immune system and I had take a “week off” a couple times due to low counts. I received steroids and anti nausea meds the day of infusion and took steroids in the morning 3 days following. They make me quite jittery so the earlier I take them the better, sometimes its a little plus too because it’ll give me a little more energy. That being said the regimen I am on is now gemzar and oxaliplatin and I am tolerating this much different than the gem cis, and I actually quite surprised unfortunately how worse I feel. Just reminds me that all these medications interact and interfere differently with each individual. Good luck on your first infusion.
PorterSorry that your mom is having a lot of pain with her abdomen and incision. While on the oxycodone I also alternated with ibuprofen throughout the day after my surgery. I also had to stay on top of gas and constipation and took stool softeners and senakoat to help alleviate with those symptoms. I found holding a pillow very helpful and in fact had body pillows around which I liked even better. I also had something by bed by the night stand to help alleviate some of my weight to help me get in and out of bed which was very useful
I hope she feels better soon.
PorterCrissie, I am so sorry to hear the latest of the passing of your dad. You have been such an amazing tremendous support for him. May he finally be at peace and rest. May you heal and grieve and look back and cherish the times you had with him. I know how tough it is. Take good care. Hugs and blessings.
Porter
