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Remission over!!!

floridajo
Posts: 485
Joined: Sep 2006

Hi guys...I am so happy for all who had good news this week,but unfortunely I won't be one more to add. My onc has called and I'm to start chemo again this Thurs...isn't it funny my ca-125 went down a bit but more disease showed up on the ct scan. I thought I would be having the paracentisis to look for ca-cells but my onc said there was enough evidence on the ct scan to start chemo, without subjecting me to the parancentisis It definetly makes sense, because of all the pain I've been having lately. Anyone have some advice or exp. with Gemzar???? Lot's of love and (((hugz)) to all...Joanne

mopar
Posts: 1948
Joined: May 2003

JoAnn:
I'm sorry your news wasn't better. Is it a mass, or what do they mean by 'enough evidence'? That's why I always wonder how much it takes for them to see something on the CT scan. There are a couple of ladies (if not more) who have been on Gemzar, who I'm sure can offer some advice to you.
I hope the hugs and prayers I'm sending your way offer some comfort and hope. I'm sure you know all the inspiring stories that have circulated and are STILL circulating here. Hang in there, JoAnn.
Love, hugs, prayers,
Monika

floridajo
Posts: 485
Joined: Sep 2006

Hi Mopar
I wanted to wait to answer you,to get my actual report first. There is quite a bit of change in the ct scan from the last on 11/25. there is more ascites, the lymph nodes that have showned up before but were not increasing in size, are now larger..they did not give a size. there is also new small growths adjacent to the liver and around the spleen. I also have some continual nincrease of size to the hepatic duct, which almost suggest a blockage. Though they can't see a mass...I have had this showing up since last Feb. and this area just keeps getting beigger. I have had numerous tests that all come out normal, so ...HMMMM..my onc/gyn said there could be a mass there, that is at such a place that it's being disquised....anyway those are my answers..hope it helped some...(((hugz)))..Joanne

mopar
Posts: 1948
Joined: May 2003

Joanne:
Thanks for answering my questions. I know it has to be difficult to answer everyone's questions, especially when we usually have so many of our own.

The issue if a 'hidden area' always did concern me. That's why I drill my doctor everytime he gets the CT results, with a lot of 'what ifs'. I hate to do that, and I know he's not God and could never say for sure, but I'm always trying to be sure it was done correctly and read correctly. My appointment is at the end of the month and, as usual, I will have my notebook with me with tons of questions.

Well, thank you for taking the time to answer me personally. I will definitely be keeping you in prayer. Let us know when you start chemo, and if there's anything I can do for you. We may be miles apart, but the Lord knows no boundaries!

Love and hugs,
Monika

Keelie
Posts: 98
Joined: Jan 2007

Hello Joanne, like Monika said, I, too, am so sorry that you didn't have better news. I was hoping to add you to the 'great' list we had going last week. I am one of the women that has tried Gemzar. In fact, they started me on it just about a year ago this month. They gave it to me for about 2 1/2 months. After one treatment, my number went down by 10 points. I think I was given it every week. Anyway, after finally taking the number down a grand total of 60, after the final treatment, my number went up quiet a bit, so they immediately stopped it. On the positive side, I didn't have any problems whatsoever with it. And, although my hair thinned considerably, I didn't go bald. That was nice. I was extremely disappointed when it didn't work, but thank goodness the taxotere/carboplatin did. They must use Gemzar because it must work for lots of women, but I know several that didn't have success such as myself. Have you ever tried Avastin? It seems to work well, but has some terrible side-affects - such as horrific headaches, like Bonnie had, and an increase in blood pressure. I hope someone that has taken Gemzar with success will post to you. By the way, Joanne, what is your present CA-125 number? Do I remember correctly, around 60ish? My heart just goes out to you having to face chemo again. You will be in all of our prayers. Stay strong and positive!!! How long was your remission? I'm up for more tests in about a week. As always, I'm thinking of cancelling appointments for the month. All the tests, then the waiting, just gets too much some times, I think. Well, I'm thinking of you and praying for you, like all of us.....Much love and hugs, MichaelaMarie aka Keelie

Cindy54's picture
Cindy54
Posts: 454
Joined: Aug 2006

Joanne, I so hoped to see some good news from you also. But your news isn't all bad. They are going to do the chemo again and your attitude is strong. Please keep that. I think most of the time that is half the battle. I will think of you this week and send a prayer your way. Cindy

BonnieR's picture
BonnieR
Posts: 1549
Joined: Jan 2004

Hi Joanne, I've had that happen, ca125 go down and ctscan show growth in disease. So frustrating. I have had gemzar and for me it didn't work, but we each are different. Are you getting it with something else or gemzar by itself?

Sending you lots of positive energy and hugs. Bonnie

JanQ's picture
JanQ
Posts: 238
Joined: Jan 2004

Joanne, I am so sorry, that breaks my heart. I just wrote Monika earlier that when my doctor decides to start chemo again, he said a few months, I am going to go to the Cancer Treatment Center of America. Before I got my news last week I contacted them and my insurance pays for it even though they are out of network. The first trip they will pay my and 1 others air fare and then the motel is 40.00-65.00 a night, and they shuttle you to the hospital. They deal with chemo, your immune system, spiritual ect...
I don't know if you would be interested.
You are in my prayers. Love and Hugs to you, Jan

floridajo
Posts: 485
Joined: Sep 2006

Hello All..
I just wanted to thank you for all the positive thoughts and prayers..and info about Gemzar....smiles and (((hugz)))...Joanne

collins
Posts: 69
Joined: Oct 2006

Joanne, I am sorry to hear you went out of remission. How long were you in remission? I am doing chemo for a second time around. Gemzar was one of the drugs my onc uses. i choose to do a study of topopecan and carboplatin. Wish you much success with the new round of treatment.
eleen

floridajo
Posts: 485
Joined: Sep 2006

Collins,
After 6 cycles of carbo/taxol and 6 more cycles of Doxil I had a 13 month remission. I was hoping for a longer one for sure. My onc did tell me that once I needed another 6 cycles of Doxil, that cure was off the table for me..and so now we treat as a chronic disease, and for quality of life. I feel blessed that I made it 13 months. I feel so much better and have gained back all my weight( boo hoo) and strentgh...so I'm good to go!!! (((hugz)))...Joanne

collins
Posts: 69
Joined: Oct 2006

Joanne, I hope the best for you. This time may be the miracle for you. I have a young friend who had lukemia at 2.5 years, at 12 cancer reoccurred at the side of his head, he did more chemo, at 17 the cancer came back in his face, more chemo and a bone marrow transplant, had half of his face removed. His parents were told to take him home to die there was no hope they had done all they could and there was nothing left to do. A year later he walked down the hospital corridor and and his doctor looked at him and said "you are still alive!" that was seven years ago and he is my big supporter today. So miracles do happen. I am in my second round of chemo right now. I was in remission for only 9 months so was devastated when I had to start chemo again. I have had one regement of chemo (2 treatments to each regiment) My white count went down to critical so I have been postponed for two weeks. Hang in there. eleen

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