linda-z
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Thanks Jennifer S for the very nice thoughts. I actually got the video idea (or at least leaving a message) from a very old movie called Time in a Bottle where, I believe, a young woman was very ill and left audio tapes for her child for different stages of his/her life, for when she couldn’t be there. I’m not to that point yet (not giving up on the fight), but know it could come to that.
Thank you everyone again for all the encouragement that is given on this website. It really does mean so much to all of us, whether directed at us specifically, or we gain something from someone else.
Thanks,
Linda Z.
Hi Laurie,
Welcome to this wonderful site. I am fairly new here too and have felt very welcome and comforted by all the wealth of knowledge that can be gleaned from the people here. Please grab all that you can use.
I just turned 53 and was diagnosed in March 09 with CC. I thought I was fortunate that my cancer was in the bile duct and mostly in the left lobe of the liver. I had very little symptoms or discomfort and had surgery in April, followed by chemo. I also had a smaller tumor in the right lobe that was burned. After chemo, all CT scans showed no cancer. My subsequent scans in Feb this year, showed the burned tumor had come back with another very small new one.
I am on chemo again, Oxaliplatin IV with Xeloda pills and then the waiting again to see if it will shrink the tumors enough for surgery again. What I will say is this. I’ve read very terrific success stories here with people that had chemo allowing them to have surgery, and people that just had chemo. What is important is that you are comfortable with your decisions.
In my case, I’m not afraid for myself, but for my family and my 5-year old son. Therefore, I would do what I can to prolong the inevitable to be there for them longer and until I feel I’ve done all I can for them, meaning my work is done here on earth. If you can get those feelings and are there for your family until they can also feel more comfort, then do what you can. You will know.
I have decided to record and leave a video diary of things that I wanted my son and rest of my family to know (that maybe I haven’t or won’t be able to tell them). So, my goal is to do what I can to complete that task. Maybe I’ll feel better about the illness when that is done, and give them more comfort and something to hold on to for a while after I have gone.
I don’t get the impression that CC is completely beatable. It may be a number of years down the road, but it appears to keep coming back. Maybe I’m wrong, but has anyone out there beat it completely for more than 6-8 years?
Take what you need from this site to make your very personal decision. I made decisions before seeing anything from here and wish that I had known more before. Good luck and best wishes here.
Linda Z.
Hi everyone, thought I would chime in here too. I’m 53 and was on Mevacor for about 7 years prior to diagnosing with CC. I also had regular blood tests every 3 months to monitor the liver function and make sure that the Mevacor was being tolerated and processed through the liver properly. Tests were always within normal range and even though an ultrasound for “possible ulcer or gallbladder” problems showed an 8cm tumor in the left lobe of my liver and bile duct, my blood tests were still normal and never elevated.
My doctors have never mentioned that the cholesterol meds could be a problem. They were more concerned with birth control pills and fertility drugs that I had taken. By the way, I am still taking the Mevacor and no one has recommended that I stop. I intend on re-visiting that thought with my Doctors soon. Heart disease runs in my family, and my cholesterol was very high without it. I guess you have to weigh your problems…..cancer or heart disease? The cancer is life-threatening right now, heart disease is not at the moment.
I know that these posts are a few months old, but just wanted to comment for future readers…..I was on Cisplatin / Gemzar for about 3 months. The nurses kept commenting that they thought I would lose my hair. I had thinning (lost about 1/2) in that every morning I would have a lot in my hands when I washed it, or combed it. I was told if I was going to lose it all….it would fall out in clumps and be gone in a few days. It would not go over a matter of weeks. My white blood count dropped low for about 3 weeks. That’s when the hair started thinning. When the count came back up, the thinning stopped. That was it. I had long hair & cut it shoulder length to not show the thin bottom so much.
Linda
Hi Slester,
I was on Gemzar and my white blood count went really low when I was on my week off. When I went back for the pre-med blood test, they found it was too low for treatment. The following week it was still too low. When it finally came back up (after being off treatment for 3 weeks), they were able to give me something extra at the end of treatment each week that prevented my white blood count from getting that low again. Since that is a common thing to have your white blood count drop (and a concern that they watch for), I don’t know why they just don’t give you the shot routinely. I was never told about the negatives for giving it. And because I went 3 weeks with a low blood count, my hair started to thin drastically. I know it was from the white blood count because as soon as my count came back up, my hair stopped coming out. I went another 2 months with treatment and my hair stayed the same.
You might ask about the shot to prevent the white blood count from dropping again (if they haven’t mentioned it already). The side effect I was told about is that it makes you ache because your bones don’t like being forced to produce more white blood cells. I noticed this a little bit, but not much, and not enough to bother me any.
Good luck, Linda
Thanks to everyone for making me feel so welcome here. After my surgery, I was sure that everything was gone and there was no need for any support system for me, as I thought that was it! I know better now and need this very much.
First, Lainy, I wanted to address your questions about the chemo. My surgeon originally said he was very certain that he got all the cancer, there were clear margins around the part removed, as well as the part that he burned, and the lymph node that had signs of cancer. In his words, he didn’t “think I needed chemo OR radiation, but would defer to his oncologist colleage” and would agree with what he suggested.
After seeing the oncologist at Univ of Chicago Medical Center too, he suggested chemo as a “precaution” but again didn’t feel that I needed radiation treatment. I went through 3 months of the chemotherapy for what I thought was precautionary. And the first CT scans showed no cancer, which I felt was because surgery was successful, not that the chemo “worked”.
I saw a radiology oncologist after chemo treatment was completed, who mentioned that it was not a good idea to do radiation at that point, because the liver had started to grow back into the area where the cancer had been removed, as well as the other organs (stomach and intestines) were now moved into that area more. Radiation had too high of a risk to other areas just for “in case”. If radiation had been done prior to chemo (when there was a big hole there), it would have been safer; less chance of damaging organs as well as the liver. I don’t know why the oncologist felt radiation therapy was not necessary at all except that the surgeon and he were so confident that they got the cancer early, and “why put you through the effects of radiation if it isn’t necessary”. Now, of course, I wish that I had known more and saw every Dr. first before any treatment to do everything I could to prevent it from returning.
The reason for the change in chemo drugs, is that even though the Drs. thought the chemo was only a precaution, and even though the first CT scans showed no cancer, the chemo in essense didn’t actually work to kill off any cancer cells if they grew and/or came back. They want to hit the cancer with something it hasn’t seen or been exposed to before to try to knock it out. Or at the very least reduce it enough so surgery can be done again.
I was told that surgery is really the only sure way to beat the cancer. Most of the time chemo only buys more time, shrinking the tumors and then they grow back, then chemo shrinks them again (and so on) until the cancer becomes resistant to the meds it’s hit with. I don’t know if this is true or not, I was putting all my trust in the doctors there that really seemed to be very skilled at what they did. I know now that it is time that I look into treatments that are out there and listen to others who have gone through the same things.
Bear with me too here, as I am just getting used to the site. Thanks for the suggestions about the searches too. I wish I had more time in the day to do things though. Having such a young son makes me want to prepare so much for him in the event that I won’t be around, like life ins that I don’t have and won’t be able to get. But then I’m dwelling on the negative, and I can’t do that or I lose the time that do I have right now. Everything seems more urgent now than it was before.
I start chemo on Tuesday. We’ll go on from there one step at a time.
Linda
