I am really worried
At the end of my treatment my onc said I had a partial response to the chemo. My CA125 was 34 and there were some small cells left. I had a small pocket of fluid around my right lung that is trapped there and doesn't cause me any problems and a small amount of fluid in my pelvic area. This was back in March. Before diagnosis I did have ascites in my abdomen so I know the feeling.
Now I am getting bloated but it is intermitent. It is relieved by passing wind and opening my bowels but it does come back. Also my stomach is soft although I feel bloated.
I can't help thinking that the fluid is building up again and I am worrying about it all the time. I go for a CA125 test next week and then to the onc the following week.
Can any of you tell me what ascites is like as I am getting mixed up between the symptoms now and I am worrying myself (which is probably aggravating whatever is going off) How do we ever get away from this worry??????????
Thanks Tina
Comments
-
worry
Tina,
I understand totally. I too suffered from IBS prior to being diagnosed....or maybe I was misdiagnosed with IBS. IBS does run in my family so for me it made perfect sense but the IBS lead to a delay in my ovca diganosis.
During my initial treatment, during my remission and to this very day I worry that every bowel symptom I have is related to the cancer. Initially, during my remission, I would insist on a scan. Now, that I am fighting a recurrence, I am not so anxious to find out. I realize now that if my bowel symptoms are related to the cancer the only way to make it better is to find a chemo that will shrink it. I have not had much luck there!
I am probably NOT making you feel better at all, sorry. The only way to truly find out is to have a scan. My symptoms do come and go. I mostly suffer from diarrhea and gas. But I think I had these symptoms on and off since my inital bowel surgery. It is going to take the body awhile to repair itself now that you are done with chemo. I didn't have much ascities. When is your next scan? Maybe having a scan will give you some peace of mind. I know it was the only way it would give me some peace of mind.0 -
ascites
Hi I had the ascites and my stomach was blown up like a nine month pregnant woman and it was hard. I worry too when I feel any bloating we will probably never stop
I hope your test next week has good results !0 -
fluid
Tina,
The fluid issue has been confusing for my mom, as well. Have you been short of breath? How long has your abdomen been bloated? My mom's doctors didn't really deal with her fluid until she was short of breath. If you recently changed your diet, that could certainly cause some discomfort. The unknowns are so scary with illness, aren't they? I hope you are able to figure out what is causing the bloating.
The only good thing is that if it is fluid that is building back up for you, there are ways to manage it. After having her abdomen drained once and her pleural cavity drained 4 times this spring/early summer she had a drain installed in her right pleural cavity and has had quite a bit of relief. Now a home health nurse comes once a week to drain the fluid - well before she is short of breath. My dad has learned how to do the drain procedure, as well. I thought having a drain would limit her, but it has not limited her at all. It has actually given her more freedom to enjoy the summer because she is not short of breath.
I wish you the best.
xoxo,
Eileen0 -
Thank-you for your comments.eward said:fluid
Tina,
The fluid issue has been confusing for my mom, as well. Have you been short of breath? How long has your abdomen been bloated? My mom's doctors didn't really deal with her fluid until she was short of breath. If you recently changed your diet, that could certainly cause some discomfort. The unknowns are so scary with illness, aren't they? I hope you are able to figure out what is causing the bloating.
The only good thing is that if it is fluid that is building back up for you, there are ways to manage it. After having her abdomen drained once and her pleural cavity drained 4 times this spring/early summer she had a drain installed in her right pleural cavity and has had quite a bit of relief. Now a home health nurse comes once a week to drain the fluid - well before she is short of breath. My dad has learned how to do the drain procedure, as well. I thought having a drain would limit her, but it has not limited her at all. It has actually given her more freedom to enjoy the summer because she is not short of breath.
I wish you the best.
xoxo,
Eileen
Thank-you for your comments. I think I have IBS because it is getting better. I have not had IBS for a while, way before I was diagnosed with cancer and I am beginning to think it is the food I am eating. I have gone back to eating lots of carbs as I am a high carb diet and I never ate those things before. Also, when I am not bloated my tummy is very soft & squiggy (just fat which is good) I remember the ascites made my tummy really hard.
Maybe I have an intolerance to the carbs and beans and pulses which I am eating more of. I am now going to keep off them and alter what i am eating.
Thank-you once again
Tina xx0 -
natural ibs therapyTina Brown said:Thank-you for your comments.
Thank-you for your comments. I think I have IBS because it is getting better. I have not had IBS for a while, way before I was diagnosed with cancer and I am beginning to think it is the food I am eating. I have gone back to eating lots of carbs as I am a high carb diet and I never ate those things before. Also, when I am not bloated my tummy is very soft & squiggy (just fat which is good) I remember the ascites made my tummy really hard.
Maybe I have an intolerance to the carbs and beans and pulses which I am eating more of. I am now going to keep off them and alter what i am eating.
Thank-you once again
Tina xx
Tina, you can laugh off this suggestion if you like, but sometimes IBS will settle down if you take a peppermint capsule (available at health food stores) before meals. Apparently it can help relax the large intestine so it doesn't get so excited about food, rather like a double peppermint tea, I suppose. Find a way to enjoy eating the things you like! You are sooo good just the way you are.0 -
I think we are, indeed,
I think we are, indeed, sisters in spirit. I have had the same thoughts.
A few weeks ago, I noticed a nagging, uncomfortable, sometimes sharply painful, thing going on in my abdomen. Always on the left side (where my big, softball-size ovarian tumor was). Only pants with an elasticized waist were tolerable. Whenever I squeezed into my cute little skinny jeans, it was as if I was wearing a torture device from the Dark Ages. Plus, I could feel something hard - something the size and shape of an unborn baby's head (or their butt - I never was sure which it was at any given time). I was terrified that I had a huge tumor growing inside my belly. And I was too scared to tell anyone for at least a week. I had terrible anxiety attacks every time I thought about it, which was pretty much all the time.
I did some Google research and discovered that I had all the symptoms of a hernia. That releived some of my anxiety, but I really wanted confirmation that I was not suffering a recurrence. I just could not let go of that idea.
Finally, I called my oncologist's office. He was out of town, but his nurse called me back and she suggested that I go see my regular doctor. "Your CA 125 was 7 just a couple of weeks ago," she said, "and whatever it is, wasn't there then. Tumors don't grow that big, that fast,"
And sure enough, that's what it was - a huge incisional hernia - since verified by both my PCP and my oncologist.
But since you asked about ascites - which I suffered from terribly pre-surgery - I can assure you that passing gas and/or moving your bowels will not relieve ascites. Nor is it intermittent. I had 3 liters of fluid drained just before my surgery, because it was sooooooooo uncomfortable, 24/7. The ascites was like early pregnancy - I lost my waistline before my belly began to stick out.
I am not just hand-holding and blowing smoke up your skirt when I say this: I truly do not think you have ascites. But if it would make you feel better, have it checked out. See your gastro doc and have him take a look, why don't you? It's hard for us to remember, but not everything is Cancer. We do have other stuff that can go wrong with our bodies.
Carlene0 -
Hi TinaTina Brown said:Thank-you for your comments.
Thank-you for your comments. I think I have IBS because it is getting better. I have not had IBS for a while, way before I was diagnosed with cancer and I am beginning to think it is the food I am eating. I have gone back to eating lots of carbs as I am a high carb diet and I never ate those things before. Also, when I am not bloated my tummy is very soft & squiggy (just fat which is good) I remember the ascites made my tummy really hard.
Maybe I have an intolerance to the carbs and beans and pulses which I am eating more of. I am now going to keep off them and alter what i am eating.
Thank-you once again
Tina xx
I know exactly what
Hi Tina
I know exactly what you are talking about. As you know I went through the same thoughts not so long ago. If you had ascites the bloating would not go away - if your stomach is okay in the morning then your okay. When I had the ascites every time I had to turn in bed I woke up and had to lift my stomach up so I could turn....and it was painful.
Hope you feel better soon and do see your doctor if you have any worries...
I got the results of the PET scan and saw my oncologist this morning and it turns out that the nodules that were picked up by the PET scan have been there all along and most likely left over from before, my CA125 was 18 and I have no health issues so chemo will be delayed until after I have another scan in October.He also said that the longer I go without chemo the better. As to the lymph nodes we will also keep an eye on them but I could have them radiated but if they are not interfering with my running (yet) I will hold off.
Keep well
Jenny.0 -
JennyTasgirl said:Hi Tina
I know exactly what
Hi Tina
I know exactly what you are talking about. As you know I went through the same thoughts not so long ago. If you had ascites the bloating would not go away - if your stomach is okay in the morning then your okay. When I had the ascites every time I had to turn in bed I woke up and had to lift my stomach up so I could turn....and it was painful.
Hope you feel better soon and do see your doctor if you have any worries...
I got the results of the PET scan and saw my oncologist this morning and it turns out that the nodules that were picked up by the PET scan have been there all along and most likely left over from before, my CA125 was 18 and I have no health issues so chemo will be delayed until after I have another scan in October.He also said that the longer I go without chemo the better. As to the lymph nodes we will also keep an eye on them but I could have them radiated but if they are not interfering with my running (yet) I will hold off.
Keep well
Jenny.
Such a wonderful
Jenny
Such a wonderful news!
I was praying for you.Enjoy!
Hugs0 -
Thanks for your comments.Hissy_Fitz said:I think we are, indeed,
I think we are, indeed, sisters in spirit. I have had the same thoughts.
A few weeks ago, I noticed a nagging, uncomfortable, sometimes sharply painful, thing going on in my abdomen. Always on the left side (where my big, softball-size ovarian tumor was). Only pants with an elasticized waist were tolerable. Whenever I squeezed into my cute little skinny jeans, it was as if I was wearing a torture device from the Dark Ages. Plus, I could feel something hard - something the size and shape of an unborn baby's head (or their butt - I never was sure which it was at any given time). I was terrified that I had a huge tumor growing inside my belly. And I was too scared to tell anyone for at least a week. I had terrible anxiety attacks every time I thought about it, which was pretty much all the time.
I did some Google research and discovered that I had all the symptoms of a hernia. That releived some of my anxiety, but I really wanted confirmation that I was not suffering a recurrence. I just could not let go of that idea.
Finally, I called my oncologist's office. He was out of town, but his nurse called me back and she suggested that I go see my regular doctor. "Your CA 125 was 7 just a couple of weeks ago," she said, "and whatever it is, wasn't there then. Tumors don't grow that big, that fast,"
And sure enough, that's what it was - a huge incisional hernia - since verified by both my PCP and my oncologist.
But since you asked about ascites - which I suffered from terribly pre-surgery - I can assure you that passing gas and/or moving your bowels will not relieve ascites. Nor is it intermittent. I had 3 liters of fluid drained just before my surgery, because it was sooooooooo uncomfortable, 24/7. The ascites was like early pregnancy - I lost my waistline before my belly began to stick out.
I am not just hand-holding and blowing smoke up your skirt when I say this: I truly do not think you have ascites. But if it would make you feel better, have it checked out. See your gastro doc and have him take a look, why don't you? It's hard for us to remember, but not everything is Cancer. We do have other stuff that can go wrong with our bodies.
Carlene
Thanks for your comments. They have all reassured me.
JENNY, I am pleased to read that the cancer isn't on the up and that the nodule is left over from before. You be so relieved. Your doctors are so good in being pro-active which must give you a great reassurance.
CARLENE, thank-you for your comments too. It is true that every little ache and pain, once you have had cancer, kinda sends a red light flashing and makes us think ITS COME BACK.
I have been trying to diet. I joined "slimming world" (not sure if any of you have heard of it) but certain foods are free to eat like: pasta, rice, potatoes, lean meat & fish. Plus veg and fruit. I have done this diet very successfully before and lost 2 stone (28 pounds) So after 4 months post chemo decided to do it again. I just love it because you are never hungry and I get to eat my favourite food - Pasta. So, I have been eating lots of pasta and I now think my body may have an intolerance to it?
SANAM, could you please shed some light on this for me because I know you are a nutritionist.
I have been diagnosed with IBS - had a colonoscopy (sp!!)as I used to suffer with it over many years. I discovered I couldn't eat white bread without an attack of bloating. Over time I singled a range of other foods out like beans & pulses. But now I am thinking Do I have a low tolerance to white pasta? It is made from white flour so I am going to avoid it for a while and see what happens.
So thank-you everyone. I don't think it is ascites as my stomach is not bloated anymore and it feels soft.0 -
ascites
Hi Tina, I can understand your worry, it is way to easy to go to the cancer place. I have had acites and your stomach is bloated but hard bloated. Could be something you are eating on this diet. Saying prayers of peace and tranquility as you wait for your Dr appt and ca125. Hugs Bonnie0 -
Dear TinaTina Brown said:Thanks for your comments.
Thanks for your comments. They have all reassured me.
JENNY, I am pleased to read that the cancer isn't on the up and that the nodule is left over from before. You be so relieved. Your doctors are so good in being pro-active which must give you a great reassurance.
CARLENE, thank-you for your comments too. It is true that every little ache and pain, once you have had cancer, kinda sends a red light flashing and makes us think ITS COME BACK.
I have been trying to diet. I joined "slimming world" (not sure if any of you have heard of it) but certain foods are free to eat like: pasta, rice, potatoes, lean meat & fish. Plus veg and fruit. I have done this diet very successfully before and lost 2 stone (28 pounds) So after 4 months post chemo decided to do it again. I just love it because you are never hungry and I get to eat my favourite food - Pasta. So, I have been eating lots of pasta and I now think my body may have an intolerance to it?
SANAM, could you please shed some light on this for me because I know you are a nutritionist.
I have been diagnosed with IBS - had a colonoscopy (sp!!)as I used to suffer with it over many years. I discovered I couldn't eat white bread without an attack of bloating. Over time I singled a range of other foods out like beans & pulses. But now I am thinking Do I have a low tolerance to white pasta? It is made from white flour so I am going to avoid it for a while and see what happens.
So thank-you everyone. I don't think it is ascites as my stomach is not bloated anymore and it feels soft.
sorry for not
Dear Tina
sorry for not commenting on your situation.whenever every one of you share something about the fear of recuurence or not working chemo or rising cA125 I don't let myself in as I believe though ALL OF YOU ARE IN MY HEART AS MY MOM IS AND I DO PRAY FOR ALL OF YOU AS MY OWN SISTERS I STILL FAR AWAY TOO BE EMPATHIC ENOUGH .That's why I never put any comment in these subjects and I am as frighten as you are.
Dear
You might have intolerence to gluten.as chemo does strange things it also might did this effect for you.Try a low lactose and low gluten diet for a while and let me know.You can use rice with bran and use non wheat breads.I myself is intolrant to white bread and pasta.Potato is also a good option.
As chemo is hard on digestive system it might take a bit longer for your intestine to get back normal.
The necessary Enzymes for digestion of lactose is also in the higher part of mucosa( your internal intestine cells)and the last part to come back to normal when it has hurt.
Spices, pepper and coffee are also might have some effects in IBS.This week try your diet without the mentiond items.
In each meal try to have a combination of carbs,veggies and meat.Do not seperate them .a balanced meal helps you keep stiety and also the hormones and enzymes balance eachother for digestion.
Your answer is yes you might develop some new intolerences and it is not permanant and after a while you will get back to your old self.
Hug
Sanam0 -
Oh thank-you Sanam so much.sanam said:Dear Tina
sorry for not
Dear Tina
sorry for not commenting on your situation.whenever every one of you share something about the fear of recuurence or not working chemo or rising cA125 I don't let myself in as I believe though ALL OF YOU ARE IN MY HEART AS MY MOM IS AND I DO PRAY FOR ALL OF YOU AS MY OWN SISTERS I STILL FAR AWAY TOO BE EMPATHIC ENOUGH .That's why I never put any comment in these subjects and I am as frighten as you are.
Dear
You might have intolerence to gluten.as chemo does strange things it also might did this effect for you.Try a low lactose and low gluten diet for a while and let me know.You can use rice with bran and use non wheat breads.I myself is intolrant to white bread and pasta.Potato is also a good option.
As chemo is hard on digestive system it might take a bit longer for your intestine to get back normal.
The necessary Enzymes for digestion of lactose is also in the higher part of mucosa( your internal intestine cells)and the last part to come back to normal when it has hurt.
Spices, pepper and coffee are also might have some effects in IBS.This week try your diet without the mentiond items.
In each meal try to have a combination of carbs,veggies and meat.Do not seperate them .a balanced meal helps you keep stiety and also the hormones and enzymes balance eachother for digestion.
Your answer is yes you might develop some new intolerences and it is not permanant and after a while you will get back to your old self.
Hug
Sanam
Oh thank-you Sanam so much. You have reassured me greatly with everything you have said I can't tell you how much better I feel
The effects of the chemo, the way your body tolerates different foods now etc. Why can't the doctors warn yo about such things?? It would stop all this worry.
Once again Sanam, thank-you, I will follow your advice and avoid pasta and anything containing white flour and see how it goes.
Tina xxxx0 -
Acites helpBonnieR said:ascites
Hi Tina, I can understand your worry, it is way to easy to go to the cancer place. I have had acites and your stomach is bloated but hard bloated. Could be something you are eating on this diet. Saying prayers of peace and tranquility as you wait for your Dr appt and ca125. Hugs Bonnie
I have acites as well, and am on Doxil once a month. I have found that when I went to my acupuncturist, he was able to treat the acites and made me much more comfortable. When I was first diagnosed with the return of the ovarian cancer, I had to be hospitalized and have the fluid drained three times in one week! Not a lot of fun. But since I started on the acupuncture I haven't had such a large buildup and haven't had to go in for draining.
Just a thought for those into alternative treatments.0 -
Hi Tina,Tina Brown said:Thanks for your comments.
Thanks for your comments. They have all reassured me.
JENNY, I am pleased to read that the cancer isn't on the up and that the nodule is left over from before. You be so relieved. Your doctors are so good in being pro-active which must give you a great reassurance.
CARLENE, thank-you for your comments too. It is true that every little ache and pain, once you have had cancer, kinda sends a red light flashing and makes us think ITS COME BACK.
I have been trying to diet. I joined "slimming world" (not sure if any of you have heard of it) but certain foods are free to eat like: pasta, rice, potatoes, lean meat & fish. Plus veg and fruit. I have done this diet very successfully before and lost 2 stone (28 pounds) So after 4 months post chemo decided to do it again. I just love it because you are never hungry and I get to eat my favourite food - Pasta. So, I have been eating lots of pasta and I now think my body may have an intolerance to it?
SANAM, could you please shed some light on this for me because I know you are a nutritionist.
I have been diagnosed with IBS - had a colonoscopy (sp!!)as I used to suffer with it over many years. I discovered I couldn't eat white bread without an attack of bloating. Over time I singled a range of other foods out like beans & pulses. But now I am thinking Do I have a low tolerance to white pasta? It is made from white flour so I am going to avoid it for a while and see what happens.
So thank-you everyone. I don't think it is ascites as my stomach is not bloated anymore and it feels soft.
I'm glad you're
Hi Tina,
I'm glad you're feeling reassured, but I'm going to chime in as well...just to add to your confidence level! At surgery, the doc removed 10 liters of ascites from my abdomen and I can assure you, I felt every one of those 10 liters whenever I moved. It felt like a bowling ball had taken up residence in my pelvis, and it NEVER went down the least little bit! The first sign of ascites I had was when I lost my waistline and then I began expanding outward. Several people thought I was VERY pregnant (as in three months over due, lol). If you're feeling of bloating is dissipating with moving your bowels or passing gas, it's most likely not ascites!
If you've been previously diagnosed with IBS and have white bread as a trigger, it's not such a far reach to assume that white pasta is also a trigger. Perhaps try a gluten free pasta or a whole wheat pasta?
Hugs, Honey! you're in my prayers!
Leesa0 -
Dear TinaTina Brown said:Oh thank-you Sanam so much.
Oh thank-you Sanam so much. You have reassured me greatly with everything you have said I can't tell you how much better I feel
The effects of the chemo, the way your body tolerates different foods now etc. Why can't the doctors warn yo about such things?? It would stop all this worry.
Once again Sanam, thank-you, I will follow your advice and avoid pasta and anything containing white flour and see how it goes.
Tina xxxx
I am happy that
Dear Tina
I am happy that you feel better.Doctors also don't know what are the eaxact outcomes of chemo!
If they knew....
Intolerences and allergy development to food might happen in any stage of life and then goes away.
(except genetic problems)I have never had allergy to garlic till a few years ago that I strted having rashes to that and my blood pressure was so low but now again I am fine with a bit of garlic!
Take care
Hug0 -
Dear TinaTina Brown said:Oh thank-you Sanam so much.
Oh thank-you Sanam so much. You have reassured me greatly with everything you have said I can't tell you how much better I feel
The effects of the chemo, the way your body tolerates different foods now etc. Why can't the doctors warn yo about such things?? It would stop all this worry.
Once again Sanam, thank-you, I will follow your advice and avoid pasta and anything containing white flour and see how it goes.
Tina xxxx
I am happy that
Dear Tina
I am happy that you feel better.Doctors also don't know what are the eaxact outcomes of chemo!
If they knew....
Intolerences and allergy development to food might happen in any stage of life and then goes away.
(except genetic problems)I have never had allergy to garlic till a few years ago that I strted having rashes to that and my blood pressure was so low but now again I am fine with a bit of garlic!
Take care
Hug0 -
Dear TinaTina Brown said:Oh thank-you Sanam so much.
Oh thank-you Sanam so much. You have reassured me greatly with everything you have said I can't tell you how much better I feel
The effects of the chemo, the way your body tolerates different foods now etc. Why can't the doctors warn yo about such things?? It would stop all this worry.
Once again Sanam, thank-you, I will follow your advice and avoid pasta and anything containing white flour and see how it goes.
Tina xxxx
I am happy that
Dear Tina
I am happy that you feel better.Doctors also don't know what are the eaxact outcomes of chemo!
If they knew....
Intolerences and allergy development to food might happen in any stage of life and then goes away.
(except genetic problems)I have never had allergy to garlic till a few years ago that I strted having rashes to that and my blood pressure was so low but now again I am fine with a bit of garlic!
Take care
Hug0 -
Hi Leesaleesag said:Hi Tina,
I'm glad you're
Hi Tina,
I'm glad you're feeling reassured, but I'm going to chime in as well...just to add to your confidence level! At surgery, the doc removed 10 liters of ascites from my abdomen and I can assure you, I felt every one of those 10 liters whenever I moved. It felt like a bowling ball had taken up residence in my pelvis, and it NEVER went down the least little bit! The first sign of ascites I had was when I lost my waistline and then I began expanding outward. Several people thought I was VERY pregnant (as in three months over due, lol). If you're feeling of bloating is dissipating with moving your bowels or passing gas, it's most likely not ascites!
If you've been previously diagnosed with IBS and have white bread as a trigger, it's not such a far reach to assume that white pasta is also a trigger. Perhaps try a gluten free pasta or a whole wheat pasta?
Hugs, Honey! you're in my prayers!
Leesa
Thank-you for your response. I am feeling so much better today both mentally & physically. My bloating has gone and so has my fear of the cancer returning - I now know I didn't have ascites.
You must've been so uncomfortable with your ascites but so relived when they did the drain. I am going to try out the gluten free pasta and see what happens. I've been avoiding it ever since and have stuck to eating rice and potatoes with my meals.
It is interesting that we can develop food intolerances at different stages of our lives.
Once again thanks for everyone's comments.
Smiling Tina xx0 -
Hi Tina,
I don't think any
Hi Tina,
I don't think any of us will ever get away from the worry (is the cancer returning?), yet; anytime I have an intestinal upset, the first thing that pops in my mind is "fluid".
Initially, prior to surgery they had to drain my fluid, however; I have not had any ongoing or recurring issues with fluid since. I just remember how bloated (I described it as about ready to have a baby) and how hard my abdomen was.
I don't know if you have had your omentum removed, but without it our abdominal fat is not as regulated or kept in check anymore, so I have begun eating 80% vegetables/fruit (not much) and 10-20% protein (not necessarily in meat form either). For me since making this change I have already dropped 16lbs on just eating better alone!
The belly IS less pronounced now. Just my little info for you.
Nevertheless; I am glad to see that things are already looking better for you and of course if it continues, a scan is definitely the order of the day and if nothing comes of it (I pray it does not), then at least you will have your peace of mind.
Take care now,
Sharon0
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