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Christie,
Sorry to hear about your mom. Last September ’09, I had a low dose of Gemzar and radiation. I started an 8-cycle of Gem/Cis in August ’10 and should complete it the first of February. I am tolerating the chemo as well as expected. I do get tired by evening, but I am able to do whatever I want to do. I am retired, so I do not work outside of the home. The oncologist said that if this combination did not work, that we would try one of the others that you mentioned. It has lowered my white and red blood cells. I was given iron the last two visits so they are hoping this will help with the fatigue. I have read that too little iron is not good, but that you can have too much and then it is stored and that is not good,
My CT scan (Oct 29) showed that the tumors are stable and I will have another one, the first of January. My CA-19 blood test count is coming down since I started the chemo, but it is still very, very high. But all in all if this combination works, it is well worth the side effects that I have had.
Best wishes to you and your mom.
TheresaLinda,
So sorry that the Mayo appointment was not what we wanted to hear. Glad that you are not going to lay down but keep looking for another opinion. Will you have to wait for the insurance approval before you go to Loyota? I was given hydrocodone (generic for vicodin) for pain. It worked much better than Tylenol but it was very constipating. Be sure you take stool softeners right awa, which I learned the hard way. As far as changing oncologists, I know it is a pain looking for a new doctor, but don’t wait. You need a caring doctor and the sooner you find one, the better.
You will be hearing from me soon.
TheresaHi, All,
Just a little update on my Gem/Cis treatment.
A couple of weeks ago, I had a CT scan and saw my UCSF doctor last Friday and had my chemo treatment today at my local oncologist’s office.
Marion, I asked about lowering the dose and the answer I got was that since this dose seems to be working, they did not want to change it for now.
The CT scan showed no shrinkage in the cancer, but it, also, showed no growth or spread. The tumor markers (CA19 and CEA) were both down. Not as low as it was before I started the chemo, again, but they have come down (but they are still “sky-high”). So, I am glad to get all the positive results, I can get.
Today, I am half way through my treatments, twelve more weeks to go.
I am on two weeks on and one week off.Not sure if I should go back to bed since I have been awake for for 5 hours or just wait until evening.
Devoncat, I am not having the weigh gain with the steroids, but on the day of chemo, I am lucky if I get 4 hours sleep that night.
Best wishes to all of you.
TheresaJust-Jill,
I may not be much help. I have Medicare as my primary and BC (Anthem) is the secondary. I have a PPO and it is costly, but so far, I haven’t had too much trouble with them paying for my scans which has included a PET.
Sorry, you having trouble with the insurance for you do not need more stress.Theresa
Margaret,
I know you asked Cindi about the telephone number, but in case, she doesn’t have it. I do. I called 800-258-7677. I called and they were very helpful. Enlive is not sold in stores but you can buy it from Home Deliviery or on line at Abbottstore.com (I am not sure if it has one or two ts) If you call this number they can give you all the information where to buy it. It has 250 calories, 9 grams of protein, 32 gm of sugar. (that’s all I wrote down). She said since I was concerned about the sugar content, that I might want to check out Glucerna which is sold in stores.
Hope this will help. Like, Tom, I don’t need to lose any more weight.
Theresa
Cindi,
Sorry, I have taken so long to thank you for your reply. I must have missed it. Thank you for replying. I did call Abbott Labs and get the information I wanted.
Like you, I do not think one nutrient is going to control the cancer cells, but I do try to watch what I eat, urban myths or whatever. And like Richard, I can not afford to lose any more weight. I find living with CC is a continuous learning experience, and I appreciate all the information that I can get.I hope Richard is feeling better since your post and that he will continue to
improve.Theresa
Rick,
As I posted earlier today at the site of Gem/Cis, I am now taking this combination, with very little side-effects, so far. My doctor is giving me this instead of Gem/Oxali because he says there are fewer side-effects. So hopefully, you will find this to be true, too.
Theresa
Hi, All,
Kathy and Rick, being in the same “boat” with you, I am always anxious to hear how you are doing. Even though, my white blood cells were down on Wednesday, I still had the regular dose of Gem/Cis because I will be off a week. It went very smoothly.
Marion, even the port is getting better. At least, now it is better than using my veins.
Kathy, unlike you, last fall when I had the radiation and chemo, I think I took it much better. Could have been because I had more weight, but this time, I am getting fatigued. Last time, I had to have the Neupogen shots, so the shots and being nauseated were the worse part of it. And, too, they cut my chemo dose very low, starting out at 600 down to 200.
This time, I am still on !400 Gem and 40 of Cis.
Kathy, only two more cycles!! That’s great, and we want some good news.
Rick, I hope your treatment went smoothly this week. Like Kathy, I am taking it very well (except getting tired in the evenings) and hope that you won’t experience the side-effects, either.
Let’s have a good week-end and look forward to a good week.
Best Wishes,Theresa
Kathy,
Isn’t it wonderful that doctor’s don’t know everything. I wish they did know more about what we have and how to treat it. I was told 6 months, but I kept looking until I found a doctor that said he couldn’t give me a time period for everyone is different Needless to say the doctors that took away HOPE, I have not seen, again.
Kathy, like you, I am looking forward to another Thanksgiving and Christmas that I did not think at one time was in my future. With God’s blessings, you will have your two year goal and beyond. We both know that we are in His Hands.
Wishing you many more good days than bad ones.
Theresa
Marion,
Considering everything, I am doing fine. This time, I feel fine in the mornings, but some evenings after I do the dinner and dishes, I am quiet tired. I do not have as much back pain this time. Maybe, it was the radiation along with the chemo. But, this time, I am having twice as much Gemzar as I did when I was also having the radiation. At first, I got very little sleep on the day of chemo, but this week was much better. In fact, my sleeping is improving — still awake several times a night but not awake for as long at a time
My appetite is good. The doctor commented this week, that he was glad that my weight was the same as it was when I started the chemo and that I had not lost more weight, which I cannot afford to do.
In order to tell you how I feel, we are already making reservations for our family vacation for next July. (We have to make them early for there are only so many cabins on the Lake where we have been going since my grandchildren were babies 13 years ago. Last year at this time, we did not make reservations for we were told I wouldn’t be here for July 2010.
But, after the chemo last fall and the MRI showing no new growth, we did make reservations. Then in May the MRI showed some growth which was confirmed with the Markers and another MRI in July and higher Markers that I should have more chemo. So, we did go on our vacation July 2010 and I started the chemo in August.
I didn’t mean to be so long winded. But I am so thankful that I am doing so well considering what is inside of me. I thank God everyday for his blessings.
Best wishes,
TheresaHi,
I had chemo yesterday in my port and it went better. I had the doctor’s appointment before the chemo and I told him about the trouble I was having with the nurse and the port. He assured me she was one of the best. He said he needed one with experience since she was the only one in the office that would be doing the chemo. He said he would discuss it with her. I, also, talked to the nurse and asked questions about the size of the needle she was using, etc. I had called the company that puts out the power port and had asked him why I might be having so much trouble. They told me the size of the needle that should be used and she is using the right size.I had called her earlier in the week so I could get Lidocaine (Emula) so she knew ahead of time I needed something. Anyways, it did go better. The cream seemed to help with the injection and she did not have the problem removing the needle like she had the other times. So, maybe, each time it will get better and better.
I know I haven’t posted for awhile, but I do check the board often. As I was reading from one member, and I agree, we do get so much information here.
I am scheduled for a CT scan in two weeks. I will have chemo again next week, and my week off I will have the scan to see how well this combination is working.
This time last year I had a lower dose of Gemzar along with radiation. It did not shrink the cancer but the cancer did not grow or spread either. Then the last two MRIs showed some growth so then last month I started the Gemzar and Cisplatin. I am praying for good results.
Best wished to all of you.
TheresaKevin,
Kevin, the news about Kristen hit me hard for I did not expect it. But with what we are all fighting you never know. Kristen was such an up person that I always looked forward to reading about what she was doing. She was so up front sharing her experiences. I will miss her.
Theresa
Kevin,
I am so sorry to hear that Kristen is in ICU. I was just checking to see if she had replied to my note to her under another topic. And then I thought I would check out todays’ posts and found yours. I can not stop the tears. I did not expect this news. Kristen is so personal, that you feel that she is your friend and is fighting along with all of us.
You and Kristen will be in my thoughts and prayers.Theresa
Kristin,
I must comment on the pimento cheese sandwich. I can vouch there is nothing like it. I don’t know how my mother made it, but I have tried but not as good. Could it be the cheese in California is not the same as in Tennessee. You really are making me miss that southern cooking.You said that you have a new port. I had a “power port” put in two weeks ago and I am about ready to see if I have any veins left to use. The needle going in feels like a blunt small nail. One second of pain and it is in. But removing it, has been bad. It’s like she can’t get it out. Marion suggested that I get another nurse to do it, but it is a one nurse office. Since next week is my off week, I am wondering if I should go back to the surgeon that put it in, or wait and talk to the doctor when I go for my next treatment.
So, I guess what I want to ask you, does the nurse deaden the skin before she inserts the needle and does the needle come out without you feeling it?
My doctor had mentioned gemzar/oxaliplatin, but said that genzar/cisplatin had less side effects, so decided to try it first. We can put up with side effects, if it will do the job it is intended to do.
I get so much from all of you sharing your experiences.
Best wishes,
TheresaI am on Gemzar (1400)/Cisplatin(40) for 8 cycles. A cycle is chemo on week 1 and 2 and then have a week off. I have just started this, so don’t know how it will go. Last year, I had radiation everyday for 6 weeks, along with chemo (Gemzar, starting at 600 and down to 200 because of low white blood cells, for one day a week along with the radiation. This did not shrink the cancer, but it did not grow, either. I was not on any treatment from November ’09 until this month when I started the chemo, again. I continued to have blood tests and CAT scan and MRIs. They began to show some growth around June and then my CA-19-9 and CEA blood tests have really shot up which is very distrubing. I will be having another MRI the last of October to see how well this chemo treatment is doing.
The doctor I had before, wanted to start more chemo the first of the year, but I started looking for another doctor who did not have so many patients.
Since the cancer seemed not to be growing, the oncologist from UCSF thought that we should wait until she could see some change on the scan and not rely solely on the CA-19.
So, as we are all finding out, different doctors have different opinions on how and when to treat cholangiocarinoma. As Kathy’s doctor said, “they just don’t know”. Hopefully, one day soon they will know.
Tom, no one has ever mentioned to me DNA/genetic analysis, so I have no comment on that.
Best wishes to all of you.
Theresa
