david-s
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Rose,
It sounds like you are following the treatment I had. I had stents placed in my liver also. Please let me know how your operation goes. The surgery is no picnic but well worth it in the end. Your emotions will run wild from good to bad. I know all about that. Just remember this is just a bump in the road. You will get better. ItJust wanted to catch everyone up since my last posting on Feb 25. I had my second catch up chemo treatment last Friday. This past Wednesday I had my CAT scan. Today we got the results. I AM NOW A SURVIVOR. My cancer is now in remission. They compared the not so good December 2008 CT with the one this past Wednesday and the PET scan. They couldn’t find any cancer. So, no more treatments. I will be followed for years but that sure beats treatment. I go back for a CAT scan and blood work every 4 months for the next few years.
Everyone’s treatment is different. From what I have read the standard procedure is chemo and radiation first then surgery. If I can stress one thing, in my case the surgery is what saved my life and they did it first followed by chemo. I never needed radiation. As you know I was only given two months to live and here I am seven months later writing this posting. Please talk to your doctors and see if doing surgery first is the best thing for you.
This website is a blessing. It has helped me cope with this terrible disease. Just writing all of you was great therapy for me.
My wife and I want to thank everyone for your thoughts and prayers during the last seven months. Again, we want to thank everyone. This is truly a blessed day for us.
If you want to know more about my case, just ask. We are all in this together and together we will beat this rotten disease.
Love to you all
David
Pam,
I can’t get anyone that is performing a PET or CT Scan to use my port. Even when I tell them it’s a power port. They say “We can’t take a chance in clogging the port” Seems like a poor excuse since all my nurses and the doctor who put it in say they can use it. That’s the whole idea in having a power port. Eventually I will get them to use it. It’s just a matter of time.My nurses use it for chemo and bloodwork so I do get stuck less
David
We met with the oncologist this morning. My PET/CT scan came back negative. That was such a big relief. As everyone knows, we looked at the CD and thought we saw hot spots. One thing I learned, we are not doctors and no matter what you think you see, you must not worry. The doctors are the experts and they will tell us the results. If the results are bad then you can worry. No sense in worrying twice.
My treatment plan now is two more chemo treatments then a CT scan. It will be compared to the one in December that showed the cancer spread according to the radiologist. I finished treatment #1 today. Treatment #2 is next Friday. Then the CT the week of March 9. I am even more on edge since the December CT was positive. I am going to try and take my advice from above. Don’t worry twice. We can’t change the outcome. What is meant to be is meant to be.
I will keep everyone informed about my progress
I want to thank everyone for their thoughts and prayers. I wouldn’t be here if it wasn’t for prayers.
Well, I had my PET/CT Scan on Thursday. Of course they won’t tell you anything since they are the doctors. I asked for a CD and they gave one to me. I have learned that anytime you get a CT/MRI/PET, ask for a CD. You can burn extra copies on your computer to give to all your docutors plus you should always keep a copy for your records. Anyway, we brought the CD home and put it in our computer. I have so many hot spots, we aren’t sure what is normal and what is not. Most of the spots seem to be around my kidneys. If that is the case then the cancer has spread. We looked on the Internet and saw normal and abnormal pictures that look like mine. Our daughter in law is a radiology tech and she looked at them and said she wasn’t sure. She has seen the same of normal and abnormal pictures like mine. I see the oncologist on Wednesday. The wait is alone is killing me. So many things run through your head. I hope its just Gods way to tell me everything is in his hands and that I will find out in due time. I will let you all know the outcome of the doctor’s visit. Take care
I went for my chemo treatment today but couldn’t get it. All my blood levels were to low again. Next Thursday is the big day. I have my PET/CT Scan. As it gets closer, my thoughts are “what if the Radiologist is right and the cancer has come back?” I tell my family not to think about it. Stay positive. I wish I could take my own advice.
I will let everyone know what the outcome of the scan is
What a week. Seems like all the non side effects are starting to come around now that I am into my second half of treatment. Last weekend I had so much energy in the morning and early afternoons but my 3:00 PM I crashed. Starting Monday I had such a hard time getting started. It lasted all week. Tuesday I started to feel sick. When I got home from work, I couldn’t stop getting sick to my stomach. That lasted through the night. Wednesday was a recoup day. Thursday, I felt a little better and today I feel fine. Just in time for treatment. Blood work was good enough to get a treatment today. One more treatment next week and I am finished with round 4. I am scheduled to get my PET/CT scan on February 19 which is my normal week off. My follow-up with the Oncologist is on February 25. Hopefully that will be my last visit official visit and I will just need the follow-ups.
Because of the potential bad news about the cancer coming back, my wife and I decided that she should get her rotary cuff surgery done while I am able to take care of her. She went in yesterday. For the next 12 weeks I will be her caregiver and mine. I can only pray I will be as good as she was to me.
God will only give us what we can handle. I hope I can live up to his expectations of me. Our prayers are with you all. Thanks for being here. This is really helping me cope.
We met with the oncologist today to develop a new plan. The plan is for me to stay on the 3 weeks on, 1 week of with chemo. He dialed it down to 1200 instead of the 1400 I was getting. While talking to the doctor, he read the radiologist report. The Radiologist thinks he sees something in my lower abdomen. Could be a mass, not sure. The funny thing is if you can say that is my surgeon and oncologist said they looked at the report and they are discounting the radiologist’s report. I will have a PET scan after this round of chemo. The good news was that my blood count was good and I was able to get my treatment today. Today is just one of those good/not so good days. Even though I have everything in order for my family, today’s news makes me think “what if” Sorry for going on about how I feel. I never kept a journal and this is a good place for me to explain how I feel and what is going on. Thanks for being here
Dnicetry,
If you go to “new member” David S you will read my story. I also have a few other postings so you can search for my name. I am on the same schedule as you are with Gemzer. I am a veteran also but not from Vietnam. 24 years in the Air Force. Hang in there my brother. Attitude IS everything. God has a plan for all of us. We just may not know what it isMy wife bought me an iPOD. I turn it on right before treatment and before I know it, I am being disconnected from the IV. Our chemo room is also open. My wife’s aunt is also being seen at the center. When we are there at the same time her and I talk about treatment, etc.
Marion,
I would rather have had the Cholangiocarcinoma bracelets. That would have meant more to me, my family and friends. I just didn’t know about your wonder website at the time. Please get the word out when your new bracelets come in. Thanks for everything you do for us!Robyn,
My surgoen is Steven M. Rudich. Tele 513-558-3892 He is the Professor of Surgery and the Director, Liver Transplant Services. You may not get in touch with him directly at first. he has a staff that handles most of his daily activities since he is in surgery everyday. You doctor might have better luck at first. It seems doctors will initially talk to each other before they talk to us. If it wasn’t for my doctors, I wouldn’t have gotten into Dr Rudich. I can’t say enough good things about him other then he took my case and I am still living to talk about it. He seems to like the tough cases. Hope all goes well for your mom. You and your family will be in our prayers. Prayer is the one thing we can always count on. I had alot of people praying for me. It truely helps. May God bless you and your family at this difficult timeCharlotte,
If you go to new member David S. I explain what my battle was/is like. I can tell you all my doctors were trained at MD Anderson. I hope you and your husband win this battle.
