Numbers are up............. a lot
Tina Brown
Member Posts: 1,036 Member
Hello my fellow tealers
I have just recieved my results from my CT scan and my CA 125.
Good news first, my CT scan shows that "the generalised peritoneal disease are essentially stable" All major organs are unremarkable, no bone lesion and no ascites or plueral fluid.
Bad news, my CA 125 has risen from 71 to 1,280?
I don't get it?
So I am to go back on chemo. They have offered my a chemo called CAELYX. I have never heard of it. Has anyone heard of it or been on it?
I am so disappointed. I always knew I would have to have chemo again at some point but its only been 6 months. I just don't understand how my numbers have gone up but my CT scan shows a stable disease.
Tina
I have just recieved my results from my CT scan and my CA 125.
Good news first, my CT scan shows that "the generalised peritoneal disease are essentially stable" All major organs are unremarkable, no bone lesion and no ascites or plueral fluid.
Bad news, my CA 125 has risen from 71 to 1,280?
I don't get it?
So I am to go back on chemo. They have offered my a chemo called CAELYX. I have never heard of it. Has anyone heard of it or been on it?
I am so disappointed. I always knew I would have to have chemo again at some point but its only been 6 months. I just don't understand how my numbers have gone up but my CT scan shows a stable disease.
Tina
0
Comments
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Tina , I am so sorry
Let's hope this round nips it in the bud for longer.take heart from the good news, it sounds as though it is contained at least. You've done it once and you will do it again. Stay positive and keep strong , sending bid ((hugs)) your direction. Xxxx0 -
Thank-youMum2bellaandwilliam said:
Tina , I am so sorry
Let's hope this round nips it in the bud for longer.take heart from the good news, it sounds as though it is contained at least. You've done it once and you will do it again. Stay positive and keep strong , sending bid ((hugs)) your direction. Xxxx
I am struggling a little tonight after the shock. I always knew I would need nore chemo but it was a shock. Thank you for your reply
Tina xx0 -
In my thoughtsTina Brown said:Thank-you
I am struggling a little tonight after the shock. I always knew I would need nore chemo but it was a shock. Thank you for your reply
Tina xx
I'm sorry to hear about the CA-125 results, is it possible it was a false reading? I've heard that could happen. Keep smiling and stay strong.0 -
checking on you
I specifically signed in to CSN today to check on you, Tina, and yours was the first message on the discussion board. I remember you were going to get your results in October and I was wondering about you. I am so terribly sorry to hear that you are back in chemo so soon. Your symptoms have been so similar to my mom's, although you are a bit younger than her. My mom is 64. My mom only had a 3 month break from chemo. Unfortunately, she suffered from pleural effusion with her recurrance, so that was her main discomfort. Now, thankfully, that has been resolved.
I think the chemo they are placing you on is similar(or maybe the same drug) to Doxil in the United States. That is what they put my mom on for her recurrance, as well. Ask if you should ice your hands, wrists, and ankles during infusion and for a week after. My mom did this and didn't suffer any of the hand and feet effects that are common with Doxil. My mom did not have terrible side effects from Doxil. I hope the medicine they are putting you on is relatively easy on you, too.
The great news is that evidence of your disease is stable. That is very good. You are dealing with numbers and not symptoms at this point, which is better than having symptoms. You are young and strong and the medicines out there are better than they used to be for this disease. I am sending an overseas hug to you, Tina. Hang in there.
Love,
Eileen0 -
always hard
I've found that it is always hard to take even when you expect it. I am sorry your numbers have risen. But, like you said, it is good that the disease is stable. I've read somewhere that sometimes the scan takes awhile to catch-up to the ca125.
When I restarted on treatment nothing was seen on my CT scan but the PET showed activity. I bet if they did a PETscan you would show activity. Hang in there Tina.0 -
Praying...kikiz said:Sorry to Hear
Tina,
I am so sorry about your counts. I am also waiting on scan results so I know it has been tough on you. Wishing you the best and you are in our prayers.
Lori
Praying that you will remain strong and encouraged even through this difficult time.
Tricia0 -
This comment has been removed by the Moderatornewhopechurchli said:Praying...
Praying that you will remain strong and encouraged even through this difficult time.
Tricia0 -
I just don't get it.
Oh Tina, I was watching most of the day to see if you posted. I feel like I just went and got my numbers. I am upset for you. I wish I was there to give you a big hug. I just hate waitng for the bomb to drop when I ask my doctor what the numbers are.
I just finished with the Doxil and it wasn't bad at all. I had four spots and it got three of them...so I still have one that I am dealing with. I am on a break from chemo right now. I am taking the Metformin. Have only been on it a month.
Tomorrow I go for a doctor visit and I will get the results of my CA125. I dread it...I dread it....I dread it.
Sending you lots of hugs.
Linda0 -
Dear Tina
I am so sorry to hear the news about your numbers....I am with Nancy and NAncy about doing a PET scan....they had some trouble determining some spots with my mothers CT, and when they did the PET, things became clearer...The drug you are talking about is DOxil here in the US...Libby is on Doxil, my Mom is on Doxil, Kathleen has done Doxil...it's gold standard for recurrence....I totally understand that feeling when you hear those numbers...it's almost harder than the initial diagnosis....Keep in mind there are many chemos available...please keep us posted..you can deal with this news....I think its a great sign that they don't see much on the CT...Take care...lots of prayers...Lisa0 -
Tina.... I've always said
Tina.... I've always said this disease is a heart-breaker. It lets us get our hopes up (and our numbers down), then comes and slaps us into a whole new reality, just when we are least expecting it.
I am beyond sad to hear this news. I have not been on much the last week or so because of my hand surgery. Typing one-handed is a real PITA, so I have just occupied myself by reading. I just jumped on tonight to see what everyone was up to.
Lots of women respond to Doxil, I've heard, so I hope it works for you. Please keep us posted. I know you didn't get much of a break, but catching it while it's still stable is a good thing. At least it's not growing.
I have been in chemo non-stop since a few weeks after my diagnosis - just over a year now. And it's really not so bad. The hair thing.........yes, there is that. But after a year without it, you get kind of used to not having it.
Carlene0 -
Hi Tina
(((HUG)))... sorry about the rise in the CA-125s, but the CT scan sounds very positive. I can tell you that I had 4 rounds of Doxil this summer. The side effects are generally mild and I did not experience hair loss. In fact, my hair, eyebrows and eyelashes continued growing for I had just completed 4 rounds of carbo/taxol. The big thing to be aware of with Doxil is the hand/foot syndrome. This can be greatly reduced by icing your feet and hands during the chemo and for five minutes at a time very often for at least the first five days after the infusion. No citrus or spicy foods for the first five days, cool rather that hot showers and cream up those hands and feet often. You know you can count on all of us to be "right by your side".
(((MORE HUGS))) Maria0 -
Hi Tina, I'm sorry you are
Hi Tina, I'm sorry you are having to deal with a restart of chemo. I'm also doing chemo for recurrence and this is so much easier to tolerate than the initial course of Carbo/Taxol. I had a reaction to Doxil due to having taken a similar form (adriamycin) for breast cancer years ago. But otherwise, it was a quite manageable chemo and I liked keeping my hair (oh, vanity ;-))
On another note, I do want to comment about the diazepam you had mentioned in another post. The common trade name is Valium. It is an anti-anxiety drug that has been used for many years but if taken over long term, can cause depression (not unlike alcohol which can make one upbeat but then get depressed). My first husband was a physician who had done xtra training in psychiatry. So just be cautious in taking it, you don't need to feel any worse.
The good news is the CT has not shown any changes!
Take care, Annie0 -
Tina
I am so sorry to hear your news, I wish there was something I could do for you. You are strong, we all know that this is a battle not easily won ,take a deep breath and keep fighting. I am wishing you stength and peace, (now I sound like the "hippie" I used to be)
BIG HUG!
Colleen0 -
Thinking of you...
As I sit on the chair while my mom dozes on her couch....I am thinking of you. I think...overall that I am glad that you got the CA-125 in addition to the CT. It seems like it gives you a heads up and a quicker start this time. I am very hopeful for you and really hoping that the chemo goes well. Wishing you all the best.
Wendy0 -
Dear Tinawendybill said:Thinking of you...
As I sit on the chair while my mom dozes on her couch....I am thinking of you. I think...overall that I am glad that you got the CA-125 in addition to the CT. It seems like it gives you a heads up and a quicker start this time. I am very hopeful for you and really hoping that the chemo goes well. Wishing you all the best.
Wendy
I was not on for a
Dear Tina
I was not on for a while as my work was going crazy.I am so sorry and I hope that chemo does its best.I am thinking about you and pray for you.0 -
Dear Tina,
I'm so sorry you are having to deal with this! The number jump doesn't match the CT and this sounds strange to me. Did your doc give any explanation of that?
Caelyx is doxil, has Lisa mentioned. Several of us have used it. I used it most of last year, it kept my cancer at bay, and at the end we added in carbo and ny number wen way down.
My prayers are with you today, Tina,
kathleen0
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