Update on me
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Dear Shari, thanks on the good update. Hoping for your contiued usccess in a nice recovery. We really can’t ask for more than for life to go on as usual, that is always a good sign. Best wishes and continue to feel good.
Hi Shari….nice to hear from you again. Similar to your complaint of extreme tiredness I have learned that it is not an usual side effect of Xeloda however, the good news is that after completion of treatment the energy level rises rapidly.
Lung metastases have been reported frequently and in most instances they appear to be a byproduct of this cancer with little overall negative effect on the patient. In fact, I remember our JeffG (10 year CC patient) reporting a six year span with lung metastases. Considering the accelerated research allocated to this cancer I expect good news heading our way within the next few years.
It is great to hear that you are doing so well.
All my best wishes,
MarionHi all,
It has been almost 7 weeks since my lung surgery. I have been back to work for a few weeks and I am feeling good, but sore by the end of the day.
I did have my CT scan which looked good, nothing big, bad and scary. I had my tissue sent to Mayo where I had my original surgery, and they compared it to my original liver tumor and as expected it is the same. So officially I have mets to the lung. After researching and discussion with my oncologist, I have started a 6 cycle course of Oral Xeloda. I finished the first cycle, and am amazed how tired I get. This seems harder on me than the gem/cis was. But as with that this too will pass and life will go on. My life really is going on as usual, and hopefully this will go fast.
Until next time,
ShariShari, I would be inclined to revisit the lung tissue pathology report with someone able to tell you in detail exactly what was found. If it’s a cancer unrelated to cc, that’s a very good thing generally, since many lung cancers do not share cc’s proclivity to recur. I was very fortunate to have a Dr Halmos (pulmonary cancer specialist) at NY Presbyterian, who was the one who took over an hour to very carefully review the lung path report. “NOT cc” is a wonderful thing generally. My fear was that liver/bile duct cc had popped up somewhere else. My lung nodule was an ademocarcenoma totally unrelated to cc. What is ideal also is for the lung lesion to be contained and totally removed by surgery.
Hello all,
I have been feeling fairly well since surgery. I have some soreness, especially depending on how much I do, but not too much pain. I ventured out and had supper at the Olive Garden with my brother and his wife. It was nice to get some fresh air.
I have been thinking about what this means for me and this spot removed from my lung. I have a feeling that it might have been there for a while. I first had something show up on my CT scans in February. Unfortunately I did not have a previous chest CT to compare it to as all of my prior scans were of my abdomen and pelvis only. The spot at that time was 4mm and didn’t lite up on my PET scan. So I continued with my chemo treatments which I finished up the last week in April. I then had a CT scan in June and things looked status quo with my chest, abdomen and pelvis. I had a really good summer and had my 3 month check up in September. My oncologist is the one that noticed that the spot had doubled in size, still only making the spot 9mm in size. I then had a PET in which this spot lite up, so down the surgery path I went. I am grateful that I was able to have my surgery in Bismarck and didn’t have to do any traveling. It is still kinda hard to wrap my head around the spot being cancer. I am glad that it is the same cancer because I don’t know how I would handle the idea of it being another primary cancer. And I still think the news is good, they were able to resect it out and get clean margins, and there are no other signs of active tumors in my body right now.
Also of good news, prior to my very first surgery my CA 19-9 was elevated, and after surgery it was normal and it has remained that way even with this latest development.
Thanks to all of you on this website to offer words of encouragement, prayers and good feedback. It is nice to have a sounding board to bounce thoughts and ideas off of, especially those of you who know where I am coming from.Till next time,
ShariHi Shari… I really don’t know anything yet I’m just getting my feet wet but what I can say is I am praying for you. I wish for you a good PET scan in November and will look forward to you informing us of that in the days to come. May God bless you!
Shari…we have seen lung metastases and we have seen lung lesions not related to this cancer similar to what Jim has mentioned. I can’t think of many where the lung issues became the biggest problem. A “watch and see” approach recommendation will not surpise me.
Hopefully you are feeling stronger again.
All my best wishes,
MarionShari, where are the mets resident?
I too, had a resection some time ago, and in May this year, also had a lung nodule removed. I was very interested in the lung lesion pathology and a very experienced pulmonary specialist reviewed the path report with us in great detail. As it turned out, the lung lesion was totally unrelated to cc, and is very unlikely to recur. I’m a little mystified by the mets with you having no signs of cc in the liver and the lung surgery presenting clear margins.
I would be inclined for additional opinions, if there’s any doubt at all. BTW, I’m going through a time of some uncertainty. All my scans have been clean, including a PET/CT done three days ago. The uncertainty comes from blood test anomalies (I had perfectly normal CA 19-9’s and liver function panels for two years following surgery). In early August I had a CA 19-9 that was 88 (normal is < 37), followed by 133, 73 and 102 over the past few months. Had another Wed., but results not yet available. Also, bili direct and total have trended upward and slightly above the reportable triggers over the last nine months. All doctors seem in agreement that something is going on, but so far, it's eluded detection. From what I understand, the PET/CT tumor size resolution is in the range of 1 to 2 mm, and my most recent scan was head to mid thigh. So, the mystery continues. I hope the doctors can come up with a good strategy for you. Saying a prayer for you.
Shari,
I don’t know how I would react in your situation unless I was in it, but I always believe in our body and mind’s ability to heal us. Keep the positive “waves” flowing. (I relate it to one of my favorite 1970’s movies, Kelly’s Heroes, where Oddball, played by Donald Sutherland, keeps chastising his crew members for having “negative waves”.) I also believe in the adage that God will step in and help us “after everything WE can do”. In other words, put forth our best effort, then he’ll step in.
My prayers and best wishes are with you.
Hi Shari. Wishing you a great scan in November and an easy recovery from surgery. Best Wishes!
SusieWell, Shari, it sounds pretty good to me and thanks for clarifying. Wishing you a great Scan in November. My PET is tomorrow. Got there at 630AM Monday and the machine was broken! How about spending your recovery time pampering yourself? You deserve it!
So now that I am feeling a little less drugged up from surgery, let me tell a little more of my story. Everything with my liver looks good. I have no sign of any reoccurance in my liver or my abdominal cavity. They did see this spot in February and we have been watching it since. My oncologist has been in contact with the oncologist’s at MAYO to see what their recommendations are. So currently the plan is to let me heal from surgery and have a scan in November and go from there. They also sent my slides to MAYO to have them looked over too. Just needed to vent a little and get another opinion.
ShariHi,
Sorry to hear the news.I am a patient of CC for 30months,resected twice;like you,I am in the hospital medical profession .currently I am on Xeloda BID.
My suggestion ,from one patient to another,from one medical professional to another is –Get to Mayo or MD Anderson ASAP,get a 2nd and/or 3rd opinion and see what they can do for you. Oral Xeloda lately becomes the popular regimen but if you qualify for clinical trials, you will be required 4-6 weeks off chemo before you will be qualified for the trials. So it may not be a good idea to start Xeloda .From the messages you posted in the past, it might suggested the Gemzar/cis regimen was not working; but you did not mention whether the liver CC is stable or getting worse.If it is stable,then when you go to Mayo,make sure the lung lesion is really mets of the CC or a completely different diagnosis for it.
It is very difficult not to think about our diagnosis;it is not easy to ignore the fact that we are relatively healthy outside but deep inside ,as CC patients,we are actually sicker than most of the patients that we are taking care of everyday. We hope to find cure or easy way out of this horrible disease but deep down we know it will not be easy.We wish there are no recurrences after resections,but ….; All I can say to you is –this is a tough road to travel and we do need God’s Mercy and Grace to help us to understand His will and be hopeful.
God bless.Dearest Shari, I am so sorry about these new developments. Can you go to Mayo for an appointment to see what they would recommend? Like Xeloda vs Trial? I just think that would help you make the best decision. When God solves your problems you have faith in his abilities, when he doesn’t solve your problems he has faith in your abilities! You will make the right decision. Please keep us updated and wishing you a very speedy recovery from this last round.
Hello all,
It has been a while since I posted last. Life has been good, up until my follow-up CT. I had a small spot on my lung we have been watching since February. Well it grew on my last CT scan, so I had a follow-up PET scan in which it lite up. So I just got home today from the hospital after a lung wedge resection. This surgery has been so much better for recovery, but the news isn’t good. It is mets. I am at a loss for the next step. They were able to resect it out completely and I had clean margins, but now where to go from here. My options are to just monitor and see if anything else pops up, go to MAYO in Minn. for a clinical trial, or possibly do a course of oral xeloda. Does anybody have any suggestions? Thanks for your input.
Shari
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