CA is down but still insecure :-(
Got CA into 'normal' range.
Recurrence: 6 months later
Treatment: I endured 5 cycles of IP chemo; Cisplatin + Carbo IV. Got CA into 'normal'
Recurrence: 5 months later
Treatment: I asked my Dr. if I could try Gemzar alone, as I wanted to keep my hair. It was a very wasted 6 months. It did get my CA down, but within a couple of weeks of finishing Gemzar, my abdomen filled up with fluid, and I was hospitalized. (Couldn't keep any food or water down). Stomach drained, given fluids and sent home. Only to have it recur (filled back up with fluid... about 4 litres each time), I was once again hospitalized and truly thought "this is it; I'm going to die this time". They drained it
again, (NOT fun), more fluids, sent me home. I went from 125lbs down to 98 lbs. during those 2 incidences. That was in Sept, and I still weigh only 113lbs, drinking protein shakes and trying to gain weight back.
The Dr. immediately started chemo. This time: Taxol/Carbo/+Avastin. The first 3 treatments my CA actually went UP! Finally after the 4th, it dropped a lovedly 49 pts.
Almost to the 'normal' range. Then after treatment 5, I hit "normal", and I still get 1 more CA after having my 6th treatment last week. I can only hope and pray that it remains "normal".
Recurrence??? God, please no... It's so hard to "keep the faith" after all of these recurrences in less than 4 years. Any words of encouragement would be greatly appreciated at this time.
I feel insecure in being "happy" about my CA! It's like I'm afraid to get my hopes up. It's been such a very long road, and I feel that I'm very close to God, and I've kept up as best of an attitude that I possibly can. My husband has been a God-Send, and I know that he's suffering as much as I am. But I have to admit, that it's getting hard to keep
putting on a 'smiley face'. And there are countless friends that I don't hear from any more. I guess they just don't know what to say or they just have better things to think about. In the beginning I had so much support; and it's all vanished.
Has anyone else experienced this? How do you not let it hurt your feelings?? I feel myself getting depressed, and I can't let that happen.
(((Hugs to all)))
~Susan
Comments
-
depression
Hi Susan,
I usually just read, but today felt compelled to write to you. I was diag. in Sept. 07 with stage 3-c, and had the big surgery with lots of fluid that had to be drained off post surgery. Then the same regiman of chemo. I have been in remission for two years, but my ca125 has been rising since June and is now at 22 on a scale where it should be under 20. I go to my doctor this Monday and I'm so scared that it's back. This whole year I've been very depressed and worried so much so that I started seeing a therapist and began taking Prozac as well as atavan which is also an anti-angziety drug. My marriage of 17 years also broke up last summer as my husband couldn't deal with my not accepting all of this. I also moved from AZ to KS to be closer to my family. I feel that the therapy and the prozac have helped me somewhat, but I am also trying to find a support group of people with this type of cancer. I will keep you in my prayers as I fully understand all of your feelings about this disease.0 -
Depression is normal
Susan and Veggiegal,
My first word of advise to you both as a stage 4ovarian survivor of 3 years.
Don't get caught up in the numbers game; ask anyone on this board...you will go crazy if you do, literally!
I'm not saying it isn't good to have a gauge as to where the cancer is, but after meeting so many people with high numbers and ned or people with low numbers and tumors everywhere I quickly realized with much relief, the number game is not a perfect science. It is however; for oncologists a standard of measure of sorts? Also, recent research has now shown, that if the numbers do go up, it is best not to jump so quickly to conclusion to start another round of chemo its definitely a topic of debate.
In fact my oncologist and I agree and she just closely watches the two para-aortic lymph-nodes that have just never gone away completely; reduced, sometimes substantially, but never completely away.
I hope this new medication/chemo (called etopocide), accomplishes that reduction for the first in my life since dealing with this cancer.
My point is ...try to refocus and don't waste precious time with worry (yes it is easier said than done), but if try really hard, you will find you can live with this.
Don't let this take control of your life. I've been there too with the lexapro and everything and it's a dark time, but little by little it will get better.
Best of luck to you both and many prayers,
Sharon0 -
May 06
Hi Susan,
I was diagnosed the same month as you were... 3C/big surgery/6 carbo/taxols. My CA-125's stayed in the normal range till they started creeping up last May and I'm now enduring another round of carbo/taxol. I can totally relate to the vanishing of friends and my case relatives. I'm exhausted and I have cabin fever from being stuck in the house by myself day after day. I'm normally such an upbeat person, but I'm also very hurt. I try not to think about these negative thoughts, but they creep in. I try not to look ahead to the fact that I've got at least 4 more months of this to go through and putting on a "smiley face" is indeed getting tougher.
I wish you a long,long,long time in the normal range. Be very happy about your counts, celebrate, kick up your heels and look forward to spring and summer..... I hope I won't be far behind you.
((((HUGS)))) Maria0 -
HugsMwee said:May 06
Hi Susan,
I was diagnosed the same month as you were... 3C/big surgery/6 carbo/taxols. My CA-125's stayed in the normal range till they started creeping up last May and I'm now enduring another round of carbo/taxol. I can totally relate to the vanishing of friends and my case relatives. I'm exhausted and I have cabin fever from being stuck in the house by myself day after day. I'm normally such an upbeat person, but I'm also very hurt. I try not to think about these negative thoughts, but they creep in. I try not to look ahead to the fact that I've got at least 4 more months of this to go through and putting on a "smiley face" is indeed getting tougher.
I wish you a long,long,long time in the normal range. Be very happy about your counts, celebrate, kick up your heels and look forward to spring and summer..... I hope I won't be far behind you.
((((HUGS)))) Maria
Hi - I just find it incredible how we all can relate to this. This emotional ride is hard. Sometimes on days when I feel the lowest and bluest I get in the shower and have a really good cry. I just let all those tears inside come out and wash down the drain. There is a flock of robins in my yard today and I know I need to feed the birds (one of my indoor hobbies for the winter months)- I bought a bird watching book..anyway, I saw vapor trails from planes in the sky yesterday. My husband commented that it made a perfect cross, perfect 90 degree angles. It was pretty against the blue sky. And then I thought to myself - when I looked up at first I just saw a perfect X, but he saw the cross. I knew I needed to refocus and as Maria said look for the warmth of spring, it's almost here!!! Hooray!! Think of someone you'd love to give a hug to and hug a pillow. Then if you can, give them a call and tell them that you were just thinking about them..it helps. Sending some positives + + + + your way - Ellen0 -
not much to add
Hi Susan,
I haven't seen you post in awhile. I don't have much to add but just wanted to offer support. You HAVE been on a long ride. It is tiring and seems unfair at times. I too have my bouts of not understanding how this all happened. I try never to ask 'why me'. Sometimes its hard when I see people abusing their bodies with drug and alcohol. Here I am a young, healthy women with two small kids at home.
I am currently being treated for my first reoccurence after an 8 month remission. Life goes on for everyone else but we are stuck in our reality. Some mornings I have to drag myself out of bed to get my kids to school. I plaster a smile on my face at the school but once I am alone I can grieve. I grieve for all the saddness this has caused my family and the prospect of leaving my young kids motherless. I try to put thing into perspective. These are some of things that help me: I'd rather it be me then one of my kids. I think of all the suffering and hardships people have endured. It might sound a bit extreme but I think of the atrocities against humanity. I know I've had a good life and I am not ready to die anytime soon. I try to be grateful for today.
I feel as if people truly do not understand what we are going through. I am guilty of being that same way in my past. I know people who have died from cancer. Knowing what I know now I would definately have a different attitude and response to someone I know who has cancer.0 -
Dearest Susan,
I'm so glad to see you back on the board!!! I think you started the gemzar at the same time I did gemzar/cisplatin. I can tell you are tired and disappointed. I certainly can relate to that.
I was dx a year after you, and I started 3rd line chemo in September and just keep going, although I'm not in remission. I don't know if I ever will be, and I don't dwell on it, but take my life a day at a time. NOT EASY, and took a lot of processing to get here.
I think it is impossible for friends and even family to completely understand what we go through and how to support. I am also so deeply grateful for my husband who is always there. Thank goodness your husband hasn't "vanished". Try to focus on all the good in your life. I have learned which friends I can lean on and which friends I can't.
Susan, take some time to heal and refresh yourself, not focus on the cancer. You deserve a break!!!
Praying for you today,
kathleen:)0 -
I will praykayandok said:Dearest Susan,
I'm so glad to see you back on the board!!! I think you started the gemzar at the same time I did gemzar/cisplatin. I can tell you are tired and disappointed. I certainly can relate to that.
I was dx a year after you, and I started 3rd line chemo in September and just keep going, although I'm not in remission. I don't know if I ever will be, and I don't dwell on it, but take my life a day at a time. NOT EASY, and took a lot of processing to get here.
I think it is impossible for friends and even family to completely understand what we go through and how to support. I am also so deeply grateful for my husband who is always there. Thank goodness your husband hasn't "vanished". Try to focus on all the good in your life. I have learned which friends I can lean on and which friends I can't.
Susan, take some time to heal and refresh yourself, not focus on the cancer. You deserve a break!!!
Praying for you today,
kathleen:)
When i get where I can hardly get out of bed after chemo, I get to the computer and e mail my prayer partners, when you are to sick to pray for yourself, they stand in the gap for you and pray.
It seems like each chemo gets worse than the last, I have 3 more to go and am counting the weeks.
My white count has been down so do not allow visitors except the pastor that comes before chemo and annoints me with oil and prays.
I miss my family so much and i too get depressed, but hang in there, afte the chemo we can start healing and feeling better.
I will pray for God to give you strength0 -
One Day at a Time
I am glad you posted, Susan. I think we all have some down days. It helps me to keep a "gratitude list" where I actually write all the things that are good in my life. It helps keep me focused on the important things that have blessed me. The first one is that next week, I will celebrate surviving this Stage IV Ovarian Cancer for three years! Yes, it has weakened me, but I still have the smile on my face. I am grateful that there are more chemos that I can take that might work even better. I am grateful for a supporting husband that is still with me. It goes on and on..... I pray that you are able to enjoy your good times and not sweat the numbers so often. Saundra0 -
Enjoy
Susan
You need to celebrate the normal range. I pretty much celebrate each day I get up. I started last May with chemo stage 4 and my counts were up to 2300 then went through the carbo toxil and got them to 183. I started chemo last week again on Doxil and my counts were at 1400 before treatment so won't get the results of another for a few more weeks. Remember you are allowed to feel down. I guess I look at it that friends may come and go it is there loss they can't deal with it. Try to stay upbeat you have your sisters here who won't desert you
Love and Hugs
Cat0 -
Congratulations on 3 years, Saundra!!!!saundra said:One Day at a Time
I am glad you posted, Susan. I think we all have some down days. It helps me to keep a "gratitude list" where I actually write all the things that are good in my life. It helps keep me focused on the important things that have blessed me. The first one is that next week, I will celebrate surviving this Stage IV Ovarian Cancer for three years! Yes, it has weakened me, but I still have the smile on my face. I am grateful that there are more chemos that I can take that might work even better. I am grateful for a supporting husband that is still with me. It goes on and on..... I pray that you are able to enjoy your good times and not sweat the numbers so often. Saundra
That is absolutely WONDERFUL! I am looking at my 4 year anniversary May 17.
And you're right; I also have a "Happy Moments" journal which needs written in (sounds like your 'gratitude list').
Keep doing well, and I, too, will be praying for you to enjoy your good times as well!
Love,
~Susan xoxo0 -
Thank you for your reply~veggiegal said:depression
Hi Susan,
I usually just read, but today felt compelled to write to you. I was diag. in Sept. 07 with stage 3-c, and had the big surgery with lots of fluid that had to be drained off post surgery. Then the same regiman of chemo. I have been in remission for two years, but my ca125 has been rising since June and is now at 22 on a scale where it should be under 20. I go to my doctor this Monday and I'm so scared that it's back. This whole year I've been very depressed and worried so much so that I started seeing a therapist and began taking Prozac as well as atavan which is also an anti-angziety drug. My marriage of 17 years also broke up last summer as my husband couldn't deal with my not accepting all of this. I also moved from AZ to KS to be closer to my family. I feel that the therapy and the prozac have helped me somewhat, but I am also trying to find a support group of people with this type of cancer. I will keep you in my prayers as I fully understand all of your feelings about this disease.
First, I hope that you got good results on your CA125 this week... that can be so nerve-wracking! I have the lab fax me my results so that I don't have to wait for the Dr. to find out. And I am SO very sorry to hear about your divorce after so many years of marriage. I can't imagine how hard that must be; especially going through cancer as well.
I have thought about therapy, but there is only 1 that I know of for "all women's cancers", and none for Ovarian. It meets once a month. I have yet to check that out; I'm not sure if I want a group-therapy or one-on-one with a therapist.
My family M.D. prescribes Xanax for the anxiety, and that truly does help to take the edge off, and helps me get to sleep. I often have insomnia from the stress.
I hope that the move you made has been a good one, and that you have found a good doctor in Kansas. I'll keep you in my prayers as well, and hope you find the perfect support group.
xoxo ~Susan0 -
Yes, I think depression is normal too.msfanciful said:Depression is normal
Susan and Veggiegal,
My first word of advise to you both as a stage 4ovarian survivor of 3 years.
Don't get caught up in the numbers game; ask anyone on this board...you will go crazy if you do, literally!
I'm not saying it isn't good to have a gauge as to where the cancer is, but after meeting so many people with high numbers and ned or people with low numbers and tumors everywhere I quickly realized with much relief, the number game is not a perfect science. It is however; for oncologists a standard of measure of sorts? Also, recent research has now shown, that if the numbers do go up, it is best not to jump so quickly to conclusion to start another round of chemo its definitely a topic of debate.
In fact my oncologist and I agree and she just closely watches the two para-aortic lymph-nodes that have just never gone away completely; reduced, sometimes substantially, but never completely away.
I hope this new medication/chemo (called etopocide), accomplishes that reduction for the first in my life since dealing with this cancer.
My point is ...try to refocus and don't waste precious time with worry (yes it is easier said than done), but if try really hard, you will find you can live with this.
Don't let this take control of your life. I've been there too with the lexapro and everything and it's a dark time, but little by little it will get better.
Best of luck to you both and many prayers,
Sharon
And Sharon, I just love your smile! You look like you're just always "up" and I bet you have the best attitude, don't you?? :-) You just have a friendly face, and we need those around here!
Thank you for your encouraging reply, and I know you're right. My Dr. also tells me not to pay so much attention to the numbers along with reading the internet, etc.
I sure hope that etopocide does the trick for you! It sounds like you're doing great on this 3-year journey. That's what I have in, too. It'll be 4 years in May, I'm stage 3c.
Thanks for the advice, and I will sure try and refocus and get my mind on other things. Fun things like... er, income tax. ick!
~Susan xoxo0 -
and I will pray for you as well xoxoazgrandma said:I will pray
When i get where I can hardly get out of bed after chemo, I get to the computer and e mail my prayer partners, when you are to sick to pray for yourself, they stand in the gap for you and pray.
It seems like each chemo gets worse than the last, I have 3 more to go and am counting the weeks.
My white count has been down so do not allow visitors except the pastor that comes before chemo and annoints me with oil and prays.
I miss my family so much and i too get depressed, but hang in there, afte the chemo we can start healing and feeling better.
I will pray for God to give you strength
I'm in the same boat as you right now; no white cells. I feel like I'm on house arrest! I
may as well rob a bank, cuz I'm sure doing the time~
Stay strong, az, and I will try to do the same xoxo0 -
Thank you, Bonnie!BonnieR said:Hugs
Dearest Susan, Just wanted to leave you a (((HUG))) Pray yuo are already rebounding from the depression. Hugs ♥ Prayers bonnie
Always great to hear from you (((Hugs))) back to you, and thank you for the prayers. Yes, I'm rebounding from the depression (I think that's what my chemo-brain is thinking today).
Hugs & Love,
~Susan xoxo0 -
We're both on "house arrest" !!Mwee said:May 06
Hi Susan,
I was diagnosed the same month as you were... 3C/big surgery/6 carbo/taxols. My CA-125's stayed in the normal range till they started creeping up last May and I'm now enduring another round of carbo/taxol. I can totally relate to the vanishing of friends and my case relatives. I'm exhausted and I have cabin fever from being stuck in the house by myself day after day. I'm normally such an upbeat person, but I'm also very hurt. I try not to think about these negative thoughts, but they creep in. I try not to look ahead to the fact that I've got at least 4 more months of this to go through and putting on a "smiley face" is indeed getting tougher.
I wish you a long,long,long time in the normal range. Be very happy about your counts, celebrate, kick up your heels and look forward to spring and summer..... I hope I won't be far behind you.
((((HUGS)))) Maria
Hi, Maria,
It sounds like your friends & family have vanished as well. It's funny; cuz the ones that aren't here, are the ones that I expected the most from, and vice-versa. Did you ever notice that? But I just keep smiling, too. Once in a while I open up about it to my husband, but he just doesn't seem to understand or doesn't know what to say. I must say, I
have met some of my most supportive friends right through this computer
Sounds like we're both on 'house arrest' with these darn low white cells. It's okay, as I don't have much energy to do anything anyway. I'm hoping to go see "Alice In Wonderland" next week (it's in 3D and releases on my birthday). But it'll depend on my white count. I
doubt it... I was only at .45 last week. Pretty low... So yes, I can certainly identify with your 'cabin fever', as I have a severe case myself.
I hope your 4 months zips by, and that we both (all) get a very long remission.
(((Hugs)))
~Susan xoxo0 -
Thank you for the supportnancy591 said:not much to add
Hi Susan,
I haven't seen you post in awhile. I don't have much to add but just wanted to offer support. You HAVE been on a long ride. It is tiring and seems unfair at times. I too have my bouts of not understanding how this all happened. I try never to ask 'why me'. Sometimes its hard when I see people abusing their bodies with drug and alcohol. Here I am a young, healthy women with two small kids at home.
I am currently being treated for my first reoccurence after an 8 month remission. Life goes on for everyone else but we are stuck in our reality. Some mornings I have to drag myself out of bed to get my kids to school. I plaster a smile on my face at the school but once I am alone I can grieve. I grieve for all the saddness this has caused my family and the prospect of leaving my young kids motherless. I try to put thing into perspective. These are some of things that help me: I'd rather it be me then one of my kids. I think of all the suffering and hardships people have endured. It might sound a bit extreme but I think of the atrocities against humanity. I know I've had a good life and I am not ready to die anytime soon. I try to be grateful for today.
I feel as if people truly do not understand what we are going through. I am guilty of being that same way in my past. I know people who have died from cancer. Knowing what I know now I would definately have a different attitude and response to someone I know who has cancer.
Hi, Nancy,
And thank you for your support and being here for me.
I understand what you mean when you see people abusing their bodies, and here we are struggling to live! I have 3 sisters and 3 nieces, ALL of whom smoke. I was the only non-smoker in the family, and I was active, doing swim aerobics 3x a week and trying to stay in shape. I was stunned when I was diagnosed stage 3c in May'06
You are absolutely right when you say life goes on for everyone else, and we are stuck in our reality. Isn't that so true? And as life is going on for many of our friends and family, they seem to forget about us. Maybe it is because they don't understand or they just don't know what to say. But I just with they'd say -something-, ya know?
Well, I must say that you look GREAT! Was that photo taken recently?? Very nice.
Best of luck with this treatment, and I hope it goes by quick for you.
(((Hugs)))
~Susan xoxo0 -
Thanks for the positives! + + + + + + + +NCEllen said:Hugs
Hi - I just find it incredible how we all can relate to this. This emotional ride is hard. Sometimes on days when I feel the lowest and bluest I get in the shower and have a really good cry. I just let all those tears inside come out and wash down the drain. There is a flock of robins in my yard today and I know I need to feed the birds (one of my indoor hobbies for the winter months)- I bought a bird watching book..anyway, I saw vapor trails from planes in the sky yesterday. My husband commented that it made a perfect cross, perfect 90 degree angles. It was pretty against the blue sky. And then I thought to myself - when I looked up at first I just saw a perfect X, but he saw the cross. I knew I needed to refocus and as Maria said look for the warmth of spring, it's almost here!!! Hooray!! Think of someone you'd love to give a hug to and hug a pillow. Then if you can, give them a call and tell them that you were just thinking about them..it helps. Sending some positives + + + + your way - Ellen
What a wonderful reply, Ellen. You are so right about the beauty that we can find in our own backyard!
I just started a "happy moments" journal which was suggested by a friend. Your flock of robins and that cross caused by the vapors would sure make my list.
Yes, I need to refocus on more positive things, on a conscious level.
Sending some positives right back your way~
~Susan xoxo0 -
Good to see you, too, Kathleen!kayandok said:Dearest Susan,
I'm so glad to see you back on the board!!! I think you started the gemzar at the same time I did gemzar/cisplatin. I can tell you are tired and disappointed. I certainly can relate to that.
I was dx a year after you, and I started 3rd line chemo in September and just keep going, although I'm not in remission. I don't know if I ever will be, and I don't dwell on it, but take my life a day at a time. NOT EASY, and took a lot of processing to get here.
I think it is impossible for friends and even family to completely understand what we go through and how to support. I am also so deeply grateful for my husband who is always there. Thank goodness your husband hasn't "vanished". Try to focus on all the good in your life. I have learned which friends I can lean on and which friends I can't.
Susan, take some time to heal and refresh yourself, not focus on the cancer. You deserve a break!!!
Praying for you today,
kathleen:)
Out of the corner of my eye, that photo looks like you're wearing a Mexican Sombrero!! lol
(I'll blame it on chemo-brain and blurry eyes).
Gosh, your hair has grown in so nicely since you finished the Gemzar/Cisplatin. And silly me, trying Gemzar alone... boy, that was a waste of time! But I guess I had to try it. So
now it's time for mine to grow back, too.
Yes, I thank God every day that I have a wonderful, supportive husband who has not left me.
He's so good to me, and I am grateful every day. I realize how lucky I am to have someone like him.
You are right; I know now that I can't really count on my friends for anything (most of them live distances away), and if I don't expect anything, then I don't get disappointed.
Early after my diagnosis, I was so often disappointed; but I've learned not to take people seriously when they tell you "what they're going to do", because 9 times out of 10 it doesn't seem to happen. Not for me, anyway.
I'm taking your advice and scheduling myself to a relaxing, spoiling facial. I need it desperately, both mentally & physically. (I'm scheduling the extra-long appointment
Take care, my friend~
(((Hugs)))
~Susan xoxo0 -
your real reply landed down there VVVVVVVVVVVVkayandok said:Dearest Susan,
I'm so glad to see you back on the board!!! I think you started the gemzar at the same time I did gemzar/cisplatin. I can tell you are tired and disappointed. I certainly can relate to that.
I was dx a year after you, and I started 3rd line chemo in September and just keep going, although I'm not in remission. I don't know if I ever will be, and I don't dwell on it, but take my life a day at a time. NOT EASY, and took a lot of processing to get here.
I think it is impossible for friends and even family to completely understand what we go through and how to support. I am also so deeply grateful for my husband who is always there. Thank goodness your husband hasn't "vanished". Try to focus on all the good in your life. I have learned which friends I can lean on and which friends I can't.
Susan, take some time to heal and refresh yourself, not focus on the cancer. You deserve a break!!!
Praying for you today,
kathleen:)
:-)0
Discussion Boards
- All Discussion Boards
- 6 CSN Information
- 6 Welcome to CSN
- 121.6K Cancer specific
- 2.8K Anal Cancer
- 446 Bladder Cancer
- 308 Bone Cancers
- 1.6K Brain Cancer
- 28.5K Breast Cancer
- 395 Childhood Cancers
- 27.9K Colorectal Cancer
- 4.6K Esophageal Cancer
- 1.2K Gynecological Cancers (other than ovarian and uterine)
- 13K Head and Neck Cancer
- 6.3K Kidney Cancer
- 671 Leukemia
- 791 Liver Cancer
- 4.1K Lung Cancer
- 5.1K Lymphoma (Hodgkin and Non-Hodgkin)
- 235 Multiple Myeloma
- 7.1K Ovarian Cancer
- 56 Pancreatic Cancer
- 487 Peritoneal Cancer
- 5.4K Prostate Cancer
- 1.2K Rare and Other Cancers
- 534 Sarcoma
- 719 Skin Cancer
- 647 Stomach Cancer
- 190 Testicular Cancer
- 1.5K Thyroid Cancer
- 5.9K Uterine/Endometrial Cancer
- 6.3K Lifestyle Discussion Boards