rowena32
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Margaret, thanks for your help. I seem to be eating a lot of my time, but must not be the stuff that puts the weight on. When I was diagnosed last July, my weight was 138 and now I am down to 100. Sounds like Tom and I are in the same boat. It scares me to think of starting chemo, again, for I am already skin and bones.
How is Tom feeling? I feel good and look pretty good and that is why they have put off giving me more chemo.
One thing, I need to do is to get more exercise and get some muscle strength back.
I did buy the whole grain pasta but did not like it as well, but I will get it out and start using it.
Is Tom taking any treatments right now?Best wishes to you and Tom.
TheresaHi, All,
I haven’t been on the board lately, for I have been on vacation. Had a good time and I felt good. Before I left, I did have a blood test and I wrote that it was really high CA-19 was 9880 and the CEA test was up to 7.2. I, also, had another MRI which showed that the cancer seem to be growing. For some reason, the doctor is concerned about where I had the radiation. This is what the oncologist told me when I talked to him today. Sooooooooooooooooo, more chemo will start, again. I guess I shouldn’t complain for I haven’t had any treatments since the 1st of November.
I am waiting for the nurse to call me to let me know when I will start.
I think I will be having Gemzar/Cisplatin.
Marni, when I had chemo last Fall, they lowered my dose so that the while blood cells would not fall too low. The first time, they fell, I was given the Neopugen shots.
Kathy, you mentioned about getting the shot in the stomach. They gave me the shots in the arm. I did fine with the first two shots, but on the 3rd day, that shot was a killer. I had back spasms that kept me awake all night. But my white blood cells and platlets went up, so I was able to start chemo, again.
Best wishes,
TheresaToniAnn,
That is great news. So glad to hear that it can go into remission. It looks like I will be starting the gemzar/cisplatin treatment next month. Does your mom have the cancer in the bile duct and if so, does she have a stent?Theresa
Minh,
I tried sending you an e-mail telling you about my diagnoses last July and what I have done since then.
BUT, I was notified that it couldn’t be delivered. so if you want to give me your address, you can e-mail me by clicking the e-mail under my name.
TheresaHi, Minh,
You can go to the top of the page and put in Rowena32 on the right hand side and click, search. It will bring up my past postings which will update you on my CC (bile duct cancer), but I will, also, send you an e-mail.
TheresaHi,
I’m like some of you. I am concerned about the rise of my CA-19-9. The blood test I had on Monday came back 9880, up from the month before of 6658. In January, it was 1525 and has been going up every month since then. I do not have any symptoms of an infection. I will let you know what my doctor says when I see her on Monday.
TheresaLainy,
After finding this board eight or nine months, ago, I feel like I know so many of you. It has been so good for me.Happy Anniversary to you and Teddy and I wish you many more.
Rowena Theresa
Marion,
your directions were so clear and simple, that I was able to follow them. I don’t know if my back pain is the same, but I will mention it to the doctor, again, on Monday. Mine is more of a back ache, than pain. After a good night’s sleep, the next morning it is fine, but by evening it is back, again.
There is a lot of good information here. Thanks, for helping me find it.
TheresaI must put my “two-cents” in. I had always been in very good health, only going to the doctor once a year for a check up and to renew my prescription for Lipitor and Evista. The Lipitor is my guess, but who knows!!!
Theresa
Hi, Andy and Marions,
I am so glad to see you discussing the CA-19-9. I had a blood test on Monday, and the CBC and the CMP results looked fine except the WBC was just a little low and the ALK Phosphatase was a little high, but the doctor who put in my bile duct stent said it would never be normal. I have a metal mesh stent in one bile duct on the right side and they could not get to the left side. My total bili is within normal so that means that it is draining.
I got the results from the CA-19-9 test today and it was very depressing. It had gone from 6658 to 9880. It had been going up each month but never over 1000 in a month. I have not been on chemo since the 5th of November for my doctor said that if it is slow growing which the scans have shown, the doctor did not want to act, on the CA-19-9 results alone.I had a MRI today and hopefully, the doctor will have the report when I see her on Monday. At that time, she will, also, have the blood tests results. I am afraid that the MRI will show some growth or new stuff as I have been having some back pain. At first, I thought it might be from pushing and lifting, I had done, but now, I am wondering if it isn’t the cancer.
Could my stent need to be replaced or opened if I have no symtons like I did the first time? Andy, do you have a stent and did it need replacing without you realizing it??
Does anyone know what may be causing the back pain or is that what goes along with CC? I have mentioned it to the doctors, but they don’t say too much, but now that it has gotten worse, it worries me.
I appreciate all the good information that is on this board.
Theresa
I’m so glad of your good news, KentuckyJack. You had mentioned before that you take vitamins, supplements, etc. and I was wondering if you thought that they are helping, too. I take Milk Thistle and a mushroom complex and a few vitamins and I think they have helped my liver enzymes, but not sure how they have helped the cancer. My CA-19 is up to 6665 and the CEA is 7.9. This has me worried but my doctor doesn’t want to start chemo until the scan shows that the cancer is growing. I am wondering if anyone else’s might be that high.
I will have another blood test and MRI the middle of July. She has mentioned that they would give me Genzar/Cisplatin when I have chemo, again.
I have checked with doctors up and down the state and they have all agreed that chemo is my only choice for treatment. The last doctor I saw is a specialist in Brachytheraphy, but after seeing my scans, he said I was not a candidate. I did not ask why, since the doctor at UCSF had said she didn’t think that I should have it because for me right now the risk would be much higher than the reward.
I am still feeling good and for that I am grateful.
By the way, what cancer center are you going to, KentuckyJack?
I like to hear about the good news from all of you. Thanks, for sharing.
TheresaAndie,
After reading about your Dad, I felt that I must write that others have been told the same bad news, but we are all fighters. I was told last July ’09 after I went to the doctor on the 7th and then on the 10th the doctor call me into his office and told me to go to see a Gastroentrologist and get a MRI for I only had 6 months to live. I had a stent put in the bile duct the last of July and was sent to an oncologist (radiation) and was told there was no cure, no remission, so I asked why should I go through radiation and he said it might give me a couple more months. Needless to say, I have not seen those two doctors, again, but I have seen several others since then. I went through chemo and radiation from Sept to Nov. and since then, I have had blood tests (my CA 19-9 is very high) every month and a scan every two months. And when they see that it has started to grow, again, they will start more chemo.
This discussion board is great and you will get a lot of information here.
No doctor or anyone knows when God is going to call us. So stay postive and enjoy each day and stay away from the negative ones.
Have a good week.
TheresaHi, Snezzie,
I have not posted for awhile, but you sounded like me, trying to find the “right” doctor, so I thought I would let you know where I am for now. I sent my papers to several surgeons who all told me the same, no, I would not be a candidate since it was in the bile duct and several tumors in the liver.
I, also, went to Stanford to their Liver Board and then to UCSF. I wanted an appointment with Dr. Venook, but since I could see the oncologist that takes his “over-flow” sooner and not have to wait, I made the appointment with Dr. Kelley, who had studied under Dr. Venook for the last two to three years and worked with him. My first appointment with her was in January (I had finished a round of chemo (Gemzar) and radiation from Sept. to Nov.).
I go to see her every two months after I have a CT or MRI scan. I, also, have a blood test every month. She does not want to start chemo, again, which will probably be Gemzar/Cisplatin, until the scan shows that it has started to grow, again, or until I have some more symtoms.
I went to UCLA to see Dr. Demanes about Brachytheraphy, but after seeing my MRI, he told me a couple of weeks ago, he did not think it would help me. Maybe, microspheres???? We are to have a follow-up telephone appointment July 2.
Dr. Kelley talked to the radiologist at UCSF and the head of her department and they felt the risk was too high for the reward.
I like Dr. Kelley. The only drawback is that she only works on Mondays and Fridays so it is hard to get hold of her, BUT she does return my phone calls.
When I start chemo, again, I will have the treatments in Monterey for it is closer to home than S.F. I have seen the oncologist in Monterey to make sure he would work with Dr. Kelley for I want the Gastroentrologist (liver) department at UCSF to call the shots.
Like you, I am not willing to take one doctor’s opinion.
I have been in contact with another patient that goes to M D Anderson and would like to get HoustonMom’s e-mail address.
The members on this board have been a great support. I have learned a lot from them.
I wish you the best, and will be anxious to hear what you decide to do.Theresa
Kathyb, I got your e-mail and I sent one to you. Maybe, you did not get mine. I will see if I still have it and send it, again.
Hope all of you have a good week-end.
TheresaKathy. I was beginning to worry about you since you had not been around.
I have had a good week, nothing special but thanking God for each day. Next week will be a busy one for I have appointments with three different doctors.
Marions, I’m like you, I want to be sure to get all the opinions that I can. Lainy, we will be anxious to hear about your appointment tomorrow. Hope it will be good news and that you will get some answers.
Best wishes to all of you.
Theresa
