Can ascites build up in abdomen within days?

AussieMaddie
AussieMaddie Member Posts: 345 Member
Hi,

having had my CA125 go up to 6,000 and having started a bad cough, I would have sworn that I had ascited built up in my abdomen. My onc. referred me for a CT scans of chest, abdomen and pelvis and could not see any fluid except a very little in the pelvis. I start my new chemo this Wednesday.

About 5 days after having those CT scans, I can swear that my abdomen is most often very distended, even if I haven't eaten all day. I sit here now having eating, but less than usual, feeling extremely distended in the abdomen.

On Tuesday, I'm to have a lung function test to confirm what is happening with those.

Ventolin *does* help ease the heavy cough, but it doesn't explain the most uncomfortable distendedness of my entire abdomen.

I'm also had quite constant constipation, which I manage by taking Lactulose syrup every few days.

I asked my onc if were possible for ascites to build up literally within 5 days after having the CT scans which did not see it at all. He said that anything was possible, to get back to him if it seems to get worse.

Has anyone else had the experience of ascites build up so quickly, or have the experience of having a badly distended stomach even after a CT scan showing no sign of ascites a week before.

Just wondered if others have had this experience.

Thanks,

AussieMaddie
«1

Comments

  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    Why don't doctors explain things to us?
    I hate it when the doctors don't explain things to us. This is what happened to me:

    I had exactly the same bloating as you and last year I begged for a CT scan to see if I had ascites. But like you I didn't. So I thought no more about it and as I was on chemo it went away. This year the bloating came back. It was hard and was convinced again I had ascites. I didn't as I had another scan. SO I ASKED my doctor why my stomach was bloated. He said that it was the cancer. The tiny little cancer cells line the gut - (where the food gets processed and as it passes through to the bowel) cause the whole digestion process to slow down. As it slows down it causes masses of gas / wind. It is this wind and gas that is causing the bloating. Even tiny amounts of food make the bloating worse and it is most un-comfortable.

    The constipation is also linked as the large bowel is slowed up due to the activity of the cancer cells.

    I too have a very small amount of fluid in my pelvis.

    The fact that your CA125 is 6,000 is why you are so bloated. As you may know mine was 1,727 (the highest it has ever been) and after my first infusion the bloating in my stomach miraculously went down and my number also went down to 991. My numbers are now 327 and I am half way through and my stomach is great. No bloating at all :)

    By the way I am on Topotecan

    Hope your chemo works as well for you. Tina xxxxxx
  • daBeachBum
    daBeachBum Member Posts: 164
    Ascites
    Maddie,

    I sincerely hope that this turns out to be nothing to worry about and send good thoughts to you.

    That being said, I know from hard experience that ascites can build up very quickly. When I was in the hospital I had a period of needing a weekly paracentises until I started chemo. I do have to say that I was incredibly banged up and it seems like you are much healthier than I was at that point.

    I suggest you schedule an ultrasound if things don't clear up for you soon.

    Warm and healing thoughts coming your way!

    Ray
  • AussieMaddie
    AussieMaddie Member Posts: 345 Member

    Ascites
    Maddie,

    I sincerely hope that this turns out to be nothing to worry about and send good thoughts to you.

    That being said, I know from hard experience that ascites can build up very quickly. When I was in the hospital I had a period of needing a weekly paracentises until I started chemo. I do have to say that I was incredibly banged up and it seems like you are much healthier than I was at that point.

    I suggest you schedule an ultrasound if things don't clear up for you soon.

    Warm and healing thoughts coming your way!

    Ray

    Thank you Ray
    Hi Ray,

    along with the scans, I did have an ultrasound. No sign of ascites then e3ither.
    A befuzzlement (until I read Tina's account of it)

    Take very good care of yourself Ray,

    AussieMaddie
  • AussieMaddie
    AussieMaddie Member Posts: 345 Member

    Why don't doctors explain things to us?
    I hate it when the doctors don't explain things to us. This is what happened to me:

    I had exactly the same bloating as you and last year I begged for a CT scan to see if I had ascites. But like you I didn't. So I thought no more about it and as I was on chemo it went away. This year the bloating came back. It was hard and was convinced again I had ascites. I didn't as I had another scan. SO I ASKED my doctor why my stomach was bloated. He said that it was the cancer. The tiny little cancer cells line the gut - (where the food gets processed and as it passes through to the bowel) cause the whole digestion process to slow down. As it slows down it causes masses of gas / wind. It is this wind and gas that is causing the bloating. Even tiny amounts of food make the bloating worse and it is most un-comfortable.

    The constipation is also linked as the large bowel is slowed up due to the activity of the cancer cells.

    I too have a very small amount of fluid in my pelvis.

    The fact that your CA125 is 6,000 is why you are so bloated. As you may know mine was 1,727 (the highest it has ever been) and after my first infusion the bloating in my stomach miraculously went down and my number also went down to 991. My numbers are now 327 and I am half way through and my stomach is great. No bloating at all :)

    By the way I am on Topotecan

    Hope your chemo works as well for you. Tina xxxxxx

    Thank you both Ray and Tina
    Tina, your story tallies with mine exactly. I'm *terribly* uncomfortable with the degree of distenstion. The oncologist has, to his credit, not just pushed aside my description of my discomfort etc. After taking the first set of scans, he took anothewr set a week later but still cannot see fluid in the abdomen, or in the lung = yet my cough is worse than it was when I was first diagnosed over a year ago. When both sets of scans showed no fluid, he said that he expects the chemo (Taxol/Gemzar, started last week) to ease the symptoms of bloatedness and the discomfort in the abdomen (to the point of keeping on waking me throughout the night). He also had a contrast scan done (injected me with iodine first) to see if I might possibly have small blood clots around my lungs or heart causing the constant, often painful cough. (It feels worse than when I had the ascites the first time around, when it was the fluid causing the cough). Because he can't see fluid, he wants to check other possible reasons for the cough. At present, I'm down to using Ventolin (which sometimes seems to help) and also Panadeine Forte, which has 30mg of codeine in it, which apparently is used to stop an unproductive cough. It also helps one to sleep. I read online that it takes about 45 minutes to take to work. For me, it took over two hours, but then it *did* help and I could sleep for a few hours.

    I'm tired all the time because I keep waking either with discomfort around my upper abdomen or else by the cough, so I get to bed as ofte3n as I can.

    I haven't been posting much in general online lately beause I havnn't been well. Hope to do so if this Taxol/Gemzar actually *does* have the effects of reducing my bloatedness.

    Thank you very much for your excellent advice about the meaning of that Tina. I might show it to my onc.

    For now,

    Thank you both (((( )))) (And don't worry if I'm less often online at present. Want to sleep whenever I can)

    AussieMaddie
    xxxx

    PS Meant to add that, as a precaution, he wants the nurses at the chemo ward this coming Wednesday, to help me inject myself with "low dose?" heparin, just in case the scans aren't picking up small clots which could be contributing to my cough.

    It won't be easy to do. And I'll have to ask the nurses a question that sticks out at me: I know that the injection goes only into the fatty tissue just underneath the skin, but how far below the skin is the peritoneum? Is the fat on top of it? How much so? Might not the syringe ever pass through the peritoneum?

    Questions, questions...
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member

    Thank you both Ray and Tina
    Tina, your story tallies with mine exactly. I'm *terribly* uncomfortable with the degree of distenstion. The oncologist has, to his credit, not just pushed aside my description of my discomfort etc. After taking the first set of scans, he took anothewr set a week later but still cannot see fluid in the abdomen, or in the lung = yet my cough is worse than it was when I was first diagnosed over a year ago. When both sets of scans showed no fluid, he said that he expects the chemo (Taxol/Gemzar, started last week) to ease the symptoms of bloatedness and the discomfort in the abdomen (to the point of keeping on waking me throughout the night). He also had a contrast scan done (injected me with iodine first) to see if I might possibly have small blood clots around my lungs or heart causing the constant, often painful cough. (It feels worse than when I had the ascites the first time around, when it was the fluid causing the cough). Because he can't see fluid, he wants to check other possible reasons for the cough. At present, I'm down to using Ventolin (which sometimes seems to help) and also Panadeine Forte, which has 30mg of codeine in it, which apparently is used to stop an unproductive cough. It also helps one to sleep. I read online that it takes about 45 minutes to take to work. For me, it took over two hours, but then it *did* help and I could sleep for a few hours.

    I'm tired all the time because I keep waking either with discomfort around my upper abdomen or else by the cough, so I get to bed as ofte3n as I can.

    I haven't been posting much in general online lately beause I havnn't been well. Hope to do so if this Taxol/Gemzar actually *does* have the effects of reducing my bloatedness.

    Thank you very much for your excellent advice about the meaning of that Tina. I might show it to my onc.

    For now,

    Thank you both (((( )))) (And don't worry if I'm less often online at present. Want to sleep whenever I can)

    AussieMaddie
    xxxx

    PS Meant to add that, as a precaution, he wants the nurses at the chemo ward this coming Wednesday, to help me inject myself with "low dose?" heparin, just in case the scans aren't picking up small clots which could be contributing to my cough.

    It won't be easy to do. And I'll have to ask the nurses a question that sticks out at me: I know that the injection goes only into the fatty tissue just underneath the skin, but how far below the skin is the peritoneum? Is the fat on top of it? How much so? Might not the syringe ever pass through the peritoneum?

    Questions, questions...

    Good to hear from you
    Pleased to read your reply and I am so sorry you are still uncomfortable. It is extremely frustrating to have a constant cough and no way of comfort and relief. I hope your oncologist soon gets to the bottom of it all.

    Regarding the injection: I have to inject myself with a similar thing to boost my white blood cells. As long as it goes into fatty tissue it doesn't matter where abouts on your tummy it goes. When I was in the hospital last year the nurses used to inject me in different places in my tummy area. So that is what I do now.

    1. Find some skin on your tummy that is a bit fatty (that is dead easy for me ha ha )
    2. Pinch it
    3. Stick the needle straight into it and plunge away.
    4. Pull out the needle and rub where it was. This helps to take the sting away.

    To be honest it doesn't really hurt and you soon get used to it. The medicine will obviously go where it needs to go.

    Take care Tina xxxx
  • Neaner60
    Neaner60 Member Posts: 3

    Why don't doctors explain things to us?
    I hate it when the doctors don't explain things to us. This is what happened to me:

    I had exactly the same bloating as you and last year I begged for a CT scan to see if I had ascites. But like you I didn't. So I thought no more about it and as I was on chemo it went away. This year the bloating came back. It was hard and was convinced again I had ascites. I didn't as I had another scan. SO I ASKED my doctor why my stomach was bloated. He said that it was the cancer. The tiny little cancer cells line the gut - (where the food gets processed and as it passes through to the bowel) cause the whole digestion process to slow down. As it slows down it causes masses of gas / wind. It is this wind and gas that is causing the bloating. Even tiny amounts of food make the bloating worse and it is most un-comfortable.

    The constipation is also linked as the large bowel is slowed up due to the activity of the cancer cells.

    I too have a very small amount of fluid in my pelvis.

    The fact that your CA125 is 6,000 is why you are so bloated. As you may know mine was 1,727 (the highest it has ever been) and after my first infusion the bloating in my stomach miraculously went down and my number also went down to 991. My numbers are now 327 and I am half way through and my stomach is great. No bloating at all :)

    By the way I am on Topotecan

    Hope your chemo works as well for you. Tina xxxxxx

    Thank You Tina
    I wanted to find out if anyone was on Topotecan and if it helped the bloating, so you pegged it! I'm also taking Avastin. My doctor has me doing it weekly with the Avastin every fourth week. I'm so loking forward to my pants fitting again!

    Thanks Again,
    Neaner
  • LaundryQueen
    LaundryQueen Member Posts: 676

    Thank you Ray
    Hi Ray,

    along with the scans, I did have an ultrasound. No sign of ascites then e3ither.
    A befuzzlement (until I read Tina's account of it)

    Take very good care of yourself Ray,

    AussieMaddie

    Abdominal pain
    AussieMaddie: I'm thinkIng some of your discomfort is from tumor die off. This is my experience. The tumors become inflamed before they die.

    As you reduce the tumor burden , I expect your pain will decrease. I don't know if the codeine is making you constipated or not. Just be sure you stay on top of that so you don't have more problems.

    Hang in there. Gemzar is a major butt kicker! I'm on it now & I feel like the walking dead sometimes.

    (((hugs)))
  • AussieMaddie
    AussieMaddie Member Posts: 345 Member

    Abdominal pain
    AussieMaddie: I'm thinkIng some of your discomfort is from tumor die off. This is my experience. The tumors become inflamed before they die.

    As you reduce the tumor burden , I expect your pain will decrease. I don't know if the codeine is making you constipated or not. Just be sure you stay on top of that so you don't have more problems.

    Hang in there. Gemzar is a major butt kicker! I'm on it now & I feel like the walking dead sometimes.

    (((hugs)))

    Thank you LaundryQueen :)
    You may well be right about the tumour die off (though they've not found much in the way of tumours - at last scans, the oncologist could only find very little evidence of any tumour nodules in the pelvis and on the omentum.

    I wanted to express my sadness for your experience of the Gemzar. I'm now completed my first cycle of Taxol/Gemzar and I really believe that it is already lessening the distension of my abdomen and therefore the constancy of my cough. The only way I will know if that is true is when I have a blood test to check my CA125 level this week prior to getting the results from my oncologist on Saturday.

    I'm so sorry that you're having a difficult time with the Gemzar. May I ask what type of symptoms? I found that after 11 cycles previously on Carbo/Taxol that I had very few symptoms. I never did get nauseous, though I did get painful mouth ulcers and cramps and I lost all my hair. Since starting on Taxol/Gemzar, one cycle only so far, I have at times felt a bit yukky and have quickly taken Pramin before it gets worse. A few times, I've started to dry-retch, but put it down to the cough which has been troubling me very much. That seems to have improved in the last day or two (though I shouldn't speak too quickly because it has started to play up just now, preventing me from going back to sleep) I don't remember how quickly it took while on Carbo/Taxol to lose my hair, but my hair isn't falling out yet. One nurse said to expect it to thin and not necessarily to lose it altogether.

    One thing I find hardest is that, because my oncologist wants the Taxol/Gemzar infused very slowly, I can't get away from the chemo ward (or the chair, comfortable though it is) for *seven* hours! I have a history of mental illness of a kind that makes it difficult for me to be with other people for more than a few hours at a time, so after seven hours, I'm an emotional mess. I didn't get over that till the following day. And I look to go throught that twice a month while I'm on the Taxol/Gemzar.

    I don't know how you are having your Gemzar, whether you are having it with something else, or how often, but I'm having my Taxol/Gemzar in the exact same regimen as I had the Carbo/Taxol - half the total strength on one day, then the second half of the the dose a week later. Then I have two weeks break. I see the oncologist during the off-period for him to check how the CA125 is going.

    If you are having much difficulty with your Gemzar, would it help to have it as I do, half the dose in one week, then the second half dose the week after, with two weeks break. It worked very well with the Carbo/Taxol for 11 cycles, till it started to lose its effectiveness.

    I seem to have so few side-effects by comparison to others here that I wish I could say something that could be of help to someone else.

    Take very good care, LaundryQueen (((( ))))

    AussieMaddie
  • AussieMaddie
    AussieMaddie Member Posts: 345 Member

    Good to hear from you
    Pleased to read your reply and I am so sorry you are still uncomfortable. It is extremely frustrating to have a constant cough and no way of comfort and relief. I hope your oncologist soon gets to the bottom of it all.

    Regarding the injection: I have to inject myself with a similar thing to boost my white blood cells. As long as it goes into fatty tissue it doesn't matter where abouts on your tummy it goes. When I was in the hospital last year the nurses used to inject me in different places in my tummy area. So that is what I do now.

    1. Find some skin on your tummy that is a bit fatty (that is dead easy for me ha ha )
    2. Pinch it
    3. Stick the needle straight into it and plunge away.
    4. Pull out the needle and rub where it was. This helps to take the sting away.

    To be honest it doesn't really hurt and you soon get used to it. The medicine will obviously go where it needs to go.

    Take care Tina xxxx

    On the improve
    Hi Tina,

    Since writing the above, I wanted to fill you in on a couple of things.

    I hope this may of help to someone else: the cough wasn't allowing me to sleep (on top of the pain caused by the abdominal distension and also getting lots of cramps). Finally distressed by lack of sleep, I rang the after hours number for Palliative Care and the nurse was very helpful. She recommended that I have made up a script for OxyNorm which is mostly codeine (or like that) and, apparently, that represses a cough. Of course, it needs to be an unproductive cough as mine was, but I started to take it and staight away my sleep improved. I was later told that I could also take Pholcodeine (a cough suppressant) with the OxyNorm. Together, they repress the cough very well. As well, the OxyNorm eases the pain in my abdomen and, as codeine is known to do, it helps me to sleep. I wonder if others are familiar with OxyNorm and Pholcodeine to ease a cough.

    Today, I learned that there are some brands of cough suppressant that contain different strengths of Pholcodeine, and in greater strength, costing not much more. The first brand, a chemist's generic Pholcodeine has only 5mg of Pholcodeiene in every 5ml. A different brand ("Duro-Tuss Dry Cough Liquid" - there may be others) has 15mg of Pholcodeine in every 5ml - much stronger, and also a larger bottle.

    I'm glad that forums such as this can help us to put our hands on products that can be of help to each other.

    Thank you Tina for the advice about giving myself the injections. As it turns out, the onclogist informed me while I was at the chemo ward that a special scan showed that I don't have clots at all, so I don't need to give myself the injections - at least for now. It might come up sometime in the future and your advice will come in very handy in that case.

    I'm rapt that we can help each other with all these different pieces of advice :)

    Take good care Tina,

    AussieMaddie

    xxxxx
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member

    On the improve
    Hi Tina,

    Since writing the above, I wanted to fill you in on a couple of things.

    I hope this may of help to someone else: the cough wasn't allowing me to sleep (on top of the pain caused by the abdominal distension and also getting lots of cramps). Finally distressed by lack of sleep, I rang the after hours number for Palliative Care and the nurse was very helpful. She recommended that I have made up a script for OxyNorm which is mostly codeine (or like that) and, apparently, that represses a cough. Of course, it needs to be an unproductive cough as mine was, but I started to take it and staight away my sleep improved. I was later told that I could also take Pholcodeine (a cough suppressant) with the OxyNorm. Together, they repress the cough very well. As well, the OxyNorm eases the pain in my abdomen and, as codeine is known to do, it helps me to sleep. I wonder if others are familiar with OxyNorm and Pholcodeine to ease a cough.

    Today, I learned that there are some brands of cough suppressant that contain different strengths of Pholcodeine, and in greater strength, costing not much more. The first brand, a chemist's generic Pholcodeine has only 5mg of Pholcodeiene in every 5ml. A different brand ("Duro-Tuss Dry Cough Liquid" - there may be others) has 15mg of Pholcodeine in every 5ml - much stronger, and also a larger bottle.

    I'm glad that forums such as this can help us to put our hands on products that can be of help to each other.

    Thank you Tina for the advice about giving myself the injections. As it turns out, the onclogist informed me while I was at the chemo ward that a special scan showed that I don't have clots at all, so I don't need to give myself the injections - at least for now. It might come up sometime in the future and your advice will come in very handy in that case.

    I'm rapt that we can help each other with all these different pieces of advice :)

    Take good care Tina,

    AussieMaddie

    xxxxx

    Good news
    I am heartened to read that there is a "cough supressant" that is able to give you relief. I know how it can wear you down - cough cough coughing with no relief. So I am so pleased you have found something that is helping you.

    I used to get a similar cough when I had "plueral effusion" (Fluid around my lungs) so this is very helpful to me for the future.

    It is fablous that we are able to help and support each other in this way.

    Look after yourself, love Tina xxxx
  • abrub
    abrub Member Posts: 2,174 Member

    On the improve
    Hi Tina,

    Since writing the above, I wanted to fill you in on a couple of things.

    I hope this may of help to someone else: the cough wasn't allowing me to sleep (on top of the pain caused by the abdominal distension and also getting lots of cramps). Finally distressed by lack of sleep, I rang the after hours number for Palliative Care and the nurse was very helpful. She recommended that I have made up a script for OxyNorm which is mostly codeine (or like that) and, apparently, that represses a cough. Of course, it needs to be an unproductive cough as mine was, but I started to take it and staight away my sleep improved. I was later told that I could also take Pholcodeine (a cough suppressant) with the OxyNorm. Together, they repress the cough very well. As well, the OxyNorm eases the pain in my abdomen and, as codeine is known to do, it helps me to sleep. I wonder if others are familiar with OxyNorm and Pholcodeine to ease a cough.

    Today, I learned that there are some brands of cough suppressant that contain different strengths of Pholcodeine, and in greater strength, costing not much more. The first brand, a chemist's generic Pholcodeine has only 5mg of Pholcodeiene in every 5ml. A different brand ("Duro-Tuss Dry Cough Liquid" - there may be others) has 15mg of Pholcodeine in every 5ml - much stronger, and also a larger bottle.

    I'm glad that forums such as this can help us to put our hands on products that can be of help to each other.

    Thank you Tina for the advice about giving myself the injections. As it turns out, the onclogist informed me while I was at the chemo ward that a special scan showed that I don't have clots at all, so I don't need to give myself the injections - at least for now. It might come up sometime in the future and your advice will come in very handy in that case.

    I'm rapt that we can help each other with all these different pieces of advice :)

    Take good care Tina,

    AussieMaddie

    xxxxx

    Strong cough suppressants
    A few months ago, I was given "Tussionex", which is a 12 hour cough medicine containing hydrocodone (10 mg) and chlorpheniramine ("Chlor-Trimeton")(8 mg) in a sustained release formula. It was the first long-acting cough relief, tho it left me hung over in the morning. However, I now have it in case I ever need it again (and I'm prone to periodic bronchitis.) It's good to know it's out there.
  • wanttogetwellsoon
    wanttogetwellsoon Member Posts: 147

    Thank you both Ray and Tina
    Tina, your story tallies with mine exactly. I'm *terribly* uncomfortable with the degree of distenstion. The oncologist has, to his credit, not just pushed aside my description of my discomfort etc. After taking the first set of scans, he took anothewr set a week later but still cannot see fluid in the abdomen, or in the lung = yet my cough is worse than it was when I was first diagnosed over a year ago. When both sets of scans showed no fluid, he said that he expects the chemo (Taxol/Gemzar, started last week) to ease the symptoms of bloatedness and the discomfort in the abdomen (to the point of keeping on waking me throughout the night). He also had a contrast scan done (injected me with iodine first) to see if I might possibly have small blood clots around my lungs or heart causing the constant, often painful cough. (It feels worse than when I had the ascites the first time around, when it was the fluid causing the cough). Because he can't see fluid, he wants to check other possible reasons for the cough. At present, I'm down to using Ventolin (which sometimes seems to help) and also Panadeine Forte, which has 30mg of codeine in it, which apparently is used to stop an unproductive cough. It also helps one to sleep. I read online that it takes about 45 minutes to take to work. For me, it took over two hours, but then it *did* help and I could sleep for a few hours.

    I'm tired all the time because I keep waking either with discomfort around my upper abdomen or else by the cough, so I get to bed as ofte3n as I can.

    I haven't been posting much in general online lately beause I havnn't been well. Hope to do so if this Taxol/Gemzar actually *does* have the effects of reducing my bloatedness.

    Thank you very much for your excellent advice about the meaning of that Tina. I might show it to my onc.

    For now,

    Thank you both (((( )))) (And don't worry if I'm less often online at present. Want to sleep whenever I can)

    AussieMaddie
    xxxx

    PS Meant to add that, as a precaution, he wants the nurses at the chemo ward this coming Wednesday, to help me inject myself with "low dose?" heparin, just in case the scans aren't picking up small clots which could be contributing to my cough.

    It won't be easy to do. And I'll have to ask the nurses a question that sticks out at me: I know that the injection goes only into the fatty tissue just underneath the skin, but how far below the skin is the peritoneum? Is the fat on top of it? How much so? Might not the syringe ever pass through the peritoneum?

    Questions, questions...

    Heparin injections
    Hi Aussie M...
    When I came out of hospital in May, I was asked to self-inject heparin. It is usually just injected into the fatty tissue which is just below the skin on the abdomen ... which is what I had to do. It doesn't go any deeper than that. After the first go, I got used to it and felt good that I was managing things by myself. I too have bloating. Sometimes my abdomen feels and looks really big and I worry about ascites and whether it's building up again. Like Tina said, the intestines are sometimes sluggish which doesn't help. I find that my weight yo-yos much more than it did before I was diagnosed. I can literally be 7 or 8 pounds heavier at the end of the day despite not really eating much. I don't know why but I was thinking that maybe it's taking me longer than usual to get rid of fluids. I use half a sachet of Movicol every day which has helped me a lot to control the symptoms of constipation. It helps to draw water into the bowel and so preventing the complications of a slower than normal bowel. I really hope your symptoms start to improve soon.... :)
  • AussieMaddie
    AussieMaddie Member Posts: 345 Member
    abrub said:

    Strong cough suppressants
    A few months ago, I was given "Tussionex", which is a 12 hour cough medicine containing hydrocodone (10 mg) and chlorpheniramine ("Chlor-Trimeton")(8 mg) in a sustained release formula. It was the first long-acting cough relief, tho it left me hung over in the morning. However, I now have it in case I ever need it again (and I'm prone to periodic bronchitis.) It's good to know it's out there.

    Good info to have :)
    Thank you abrub.

    I'll keep that one in mind as well. The OxyNorm that I take in in the form of capsules and each one has 5mg of oxycodone hydrochloride. Your Tussionex obviously is stronger again so it's worth knowing - though I don't know if anyone else has had my experience of one slow-acting medication. I'd be interested to know if you have. For years, I've had arthritis in my knees and lower spine. Panadol wasn't proving to be enough, so I was recommended to try Panadol Osteo. Neither need a script. Panadol Osteo has more of the Paracetamol but is slow acting. I found that it was less effective than plain Panadol (maybe because it releases the pain relief too slowly) At least one or two other people I know have found the same thing.

    Have you had that experience of other meds which are slow-acting? I admit that that experience has made me a bit wary of slow-acting medications, but I'd love to know of people's different experiences of that.

    For now,

    AussieMaddie
  • AussieMaddie
    AussieMaddie Member Posts: 345 Member
    Neaner60 said:

    Thank You Tina
    I wanted to find out if anyone was on Topotecan and if it helped the bloating, so you pegged it! I'm also taking Avastin. My doctor has me doing it weekly with the Avastin every fourth week. I'm so loking forward to my pants fitting again!

    Thanks Again,
    Neaner

    Let us in on it when you know
    On this one, I haven't followed Tina. I'm on Taxol/Gemzar instead. Will keep an eye on how you and Tina go on Topotecan, and also your Avastin.

    At present, I've only had oine cycle of Taxol/Gemzar and, if I'm right, the distenstion has already started to go down (but surprisingly, not my weight!) The cough isn't as bad now either. I don't remember the Carbo/Taxol working so quickly. Will be able to confirm when I get results of my first blood test since starting the Taxol/Gemzar on Thursday (will have the test tomorrow).

    AussieMaddie
  • AussieMaddie
    AussieMaddie Member Posts: 345 Member

    Heparin injections
    Hi Aussie M...
    When I came out of hospital in May, I was asked to self-inject heparin. It is usually just injected into the fatty tissue which is just below the skin on the abdomen ... which is what I had to do. It doesn't go any deeper than that. After the first go, I got used to it and felt good that I was managing things by myself. I too have bloating. Sometimes my abdomen feels and looks really big and I worry about ascites and whether it's building up again. Like Tina said, the intestines are sometimes sluggish which doesn't help. I find that my weight yo-yos much more than it did before I was diagnosed. I can literally be 7 or 8 pounds heavier at the end of the day despite not really eating much. I don't know why but I was thinking that maybe it's taking me longer than usual to get rid of fluids. I use half a sachet of Movicol every day which has helped me a lot to control the symptoms of constipation. It helps to draw water into the bowel and so preventing the complications of a slower than normal bowel. I really hope your symptoms start to improve soon.... :)

    Hi WTGWS :)
    Thank you for the reassurance about giving myself Heparin injections.

    I've been a binge eater all my life and, even while I was on Carbo/Taxol, I binged until I put on about 30kg. It didn't help my binge eating that I never got nausea while on Carbo/Taxol. Since just starting on Taxol/Gemzar, I've noticed that I feel a little bit yukky occasionally, even start to dry-retch once or twice but put that down to my cough, not to the chemo. I took a Pramin each time and otherwise haven't had any signs of nausea. Yet, this time, I haven't been bingeing. Actually, I've eaten less than usual and for that reason expected to have lost weight, but I haven't. I've given up on worrying about my weight. I've worked on that over a lifetime. I just don't understand why, given that I feel less distended, my weight doesn't seem this time to be going down. It's all crazy mixed up.

    I do believe that Movicol works in the same way as the Lactulose syrup does - helps the bowel to draw in more fluid in order to soften the stool to make it easier to pass. I have Movicol on hand but generally use the Lactulose instead because I want to be careful about the amount of (Potassium, I think it is) that I consume. I'm on high doses of fluid tablets and they are Potassium-sparing. I have to be careful not to take too much Potassium. For someone else who is worried about taking sugar, they may be worried about the small amount of sugar in the Lactulose, so one has to make one's choice on the basis of what one knows best.

    You mention having a slower than normal bowel. Going by what Tina has said (she knew from her oncologist what my oncologist never knew) that my bloatedness, found *not* to be caused by fluid, is almost certainly the same as Tina described, caused by the cancer messing with my intestinal tract, creating (pockets?) of wind which causes my distension, and also is the reason why my lower bowel doesn't work at *all*.

    Since my cancer returned, the only way I can use my bowel is to push it out from very high up (if that makes sense). Not once have I seemed to have used the lower bowel at all, and I think only once has it been anything other than like fluid - even if I haven't used the Lactulose. I put that difficulty down as the reason why I now lose blood on the toilet paper or in the toilet bowel - even when I haven't used my bowel. I'll mention it to the oncologist on Thursday but it doesn't automatically scare me because I've had a lot of bleeding over many years when my diet has resulted indirectly in such bleeding. The blood is clear and bright red, not a colour to cause me to worry.

    Should I not be talking so much about bowel habits ???

    It all goes together I find with the distension, the wind, the pain etc etc. If anyone wants me to avoid the subject however, let me know. I certainly don't want to be responsible for others feeling yukky

    For now,

    Take care,

    AussieMaddie
  • wanttogetwellsoon
    wanttogetwellsoon Member Posts: 147

    Thank you LaundryQueen :)
    You may well be right about the tumour die off (though they've not found much in the way of tumours - at last scans, the oncologist could only find very little evidence of any tumour nodules in the pelvis and on the omentum.

    I wanted to express my sadness for your experience of the Gemzar. I'm now completed my first cycle of Taxol/Gemzar and I really believe that it is already lessening the distension of my abdomen and therefore the constancy of my cough. The only way I will know if that is true is when I have a blood test to check my CA125 level this week prior to getting the results from my oncologist on Saturday.

    I'm so sorry that you're having a difficult time with the Gemzar. May I ask what type of symptoms? I found that after 11 cycles previously on Carbo/Taxol that I had very few symptoms. I never did get nauseous, though I did get painful mouth ulcers and cramps and I lost all my hair. Since starting on Taxol/Gemzar, one cycle only so far, I have at times felt a bit yukky and have quickly taken Pramin before it gets worse. A few times, I've started to dry-retch, but put it down to the cough which has been troubling me very much. That seems to have improved in the last day or two (though I shouldn't speak too quickly because it has started to play up just now, preventing me from going back to sleep) I don't remember how quickly it took while on Carbo/Taxol to lose my hair, but my hair isn't falling out yet. One nurse said to expect it to thin and not necessarily to lose it altogether.

    One thing I find hardest is that, because my oncologist wants the Taxol/Gemzar infused very slowly, I can't get away from the chemo ward (or the chair, comfortable though it is) for *seven* hours! I have a history of mental illness of a kind that makes it difficult for me to be with other people for more than a few hours at a time, so after seven hours, I'm an emotional mess. I didn't get over that till the following day. And I look to go throught that twice a month while I'm on the Taxol/Gemzar.

    I don't know how you are having your Gemzar, whether you are having it with something else, or how often, but I'm having my Taxol/Gemzar in the exact same regimen as I had the Carbo/Taxol - half the total strength on one day, then the second half of the the dose a week later. Then I have two weeks break. I see the oncologist during the off-period for him to check how the CA125 is going.

    If you are having much difficulty with your Gemzar, would it help to have it as I do, half the dose in one week, then the second half dose the week after, with two weeks break. It worked very well with the Carbo/Taxol for 11 cycles, till it started to lose its effectiveness.

    I seem to have so few side-effects by comparison to others here that I wish I could say something that could be of help to someone else.

    Take very good care, LaundryQueen (((( ))))

    AussieMaddie

    The infusion experience...
    Hi Aussie M...
    The ward I go to when I have chemo is often busy which means that, when I have the infusion, I'm placed too near to other people to be comfortable. I like talking to others. To talk to perfect strangers (which is what most of the people there are) is quite nice sometimes, but I know what you mean when the encounter goes on for hours on end. It can be very exhausting from my point of view. It's hard to know what to say and then, since the common ground is the illness, it can be draining emotionally too. Some of the people at the centre use facial expressions to show they care like smiling or nodding but put their headphones in and read or snooze so they can relax. I didn't know why they did it when I first started chemo, but now I understand totally and do it myself when I need a break from talking. :)
  • AussieMaddie
    AussieMaddie Member Posts: 345 Member

    The infusion experience...
    Hi Aussie M...
    The ward I go to when I have chemo is often busy which means that, when I have the infusion, I'm placed too near to other people to be comfortable. I like talking to others. To talk to perfect strangers (which is what most of the people there are) is quite nice sometimes, but I know what you mean when the encounter goes on for hours on end. It can be very exhausting from my point of view. It's hard to know what to say and then, since the common ground is the illness, it can be draining emotionally too. Some of the people at the centre use facial expressions to show they care like smiling or nodding but put their headphones in and read or snooze so they can relax. I didn't know why they did it when I first started chemo, but now I understand totally and do it myself when I need a break from talking. :)

    Thank you WTGWS :)
    The chairs in the chemo ward where I go is busy but I must say that I don't feel that the chairs are too close. No-one talks to the one next to them. The space between us seems to be enough for that. Some people have a visitor stay with them which I find nice when I see it, though I don't miss that.

    My distress about spending so long in the ward comes from a problem I've had for very many years. For example, I have done voluntary work for a number of different organizations, mainly helping the elderly, but I always specify that I can't spend more than three hours with them at a time. I am happy to do work to support them when I am home alone, but cannot spend more than the three hours in company. It's always been true and comes from an abuse I experienced as a child. No-one in the chemo ward could possibly know why I becomes so stressed, probably think it's just a typical reaction to sitting for so long having chemo.

    As for using the headphones, I wouldn't be without my iPhone (or another smartphone if I didn't have that). The staff let me plug it in so I don't run out of battery charge (I keep with a copy of headphones, a spare charger plug and extension to allow me to extend the iPhone to where I am seated, and the chair that I sit on really is very comfortable - about the only chair in the ward that is for me. Apart from being very big, I have severe arthritis in the bottom of the spine, so that if the weight is on that part of my spine, it hurts me a lot after a while.

    I keep on the iPod on my iPhone music that calms me, some episodes of Frasier and will add later episodes of Mike and Molly. I also converted to iPhone the film "Corrina, Corrina" with Whoopi Goldberg. I love nice romances!

    Take care,

    AussieMaddie
  • wanttogetwellsoon
    wanttogetwellsoon Member Posts: 147

    Thank you WTGWS :)
    The chairs in the chemo ward where I go is busy but I must say that I don't feel that the chairs are too close. No-one talks to the one next to them. The space between us seems to be enough for that. Some people have a visitor stay with them which I find nice when I see it, though I don't miss that.

    My distress about spending so long in the ward comes from a problem I've had for very many years. For example, I have done voluntary work for a number of different organizations, mainly helping the elderly, but I always specify that I can't spend more than three hours with them at a time. I am happy to do work to support them when I am home alone, but cannot spend more than the three hours in company. It's always been true and comes from an abuse I experienced as a child. No-one in the chemo ward could possibly know why I becomes so stressed, probably think it's just a typical reaction to sitting for so long having chemo.

    As for using the headphones, I wouldn't be without my iPhone (or another smartphone if I didn't have that). The staff let me plug it in so I don't run out of battery charge (I keep with a copy of headphones, a spare charger plug and extension to allow me to extend the iPhone to where I am seated, and the chair that I sit on really is very comfortable - about the only chair in the ward that is for me. Apart from being very big, I have severe arthritis in the bottom of the spine, so that if the weight is on that part of my spine, it hurts me a lot after a while.

    I keep on the iPod on my iPhone music that calms me, some episodes of Frasier and will add later episodes of Mike and Molly. I also converted to iPhone the film "Corrina, Corrina" with Whoopi Goldberg. I love nice romances!

    Take care,

    AussieMaddie

    Entertainment
    Hi Aussie M...

    I was upset to hear about your condition. It's surprising how experiences of our childhood can impact so heavily on how we are now. They say that the past is another country but it just goes to show that if it is, we're still there in some ways.

    I know I'll have to have chemo in the future (fingers and toes crossed for it not to be too soon)so I'll keep in mind your really great suggestions for passing the time on the ward.

    Really warm wishes go your way. :)
  • AussieMaddie
    AussieMaddie Member Posts: 345 Member

    Entertainment
    Hi Aussie M...

    I was upset to hear about your condition. It's surprising how experiences of our childhood can impact so heavily on how we are now. They say that the past is another country but it just goes to show that if it is, we're still there in some ways.

    I know I'll have to have chemo in the future (fingers and toes crossed for it not to be too soon)so I'll keep in mind your really great suggestions for passing the time on the ward.

    Really warm wishes go your way. :)

    Hugs back at ya (((( )))))
    Really tired right now. Have sat up all night getting certain work done that I've wanted to do for ages, so I've mery glad to have done it but must go to bed and get some sleep before I must be up for company due later.

    Just wanted to send hugs your way before I head off to bed.

    It's 7.28am here at present. Unsure what time it is for you. Whatever time it is, have a good day :)

    AussieMaddie
  • darlakilgore
    darlakilgore Member Posts: 3

    Good to hear from you
    Pleased to read your reply and I am so sorry you are still uncomfortable. It is extremely frustrating to have a constant cough and no way of comfort and relief. I hope your oncologist soon gets to the bottom of it all.

    Regarding the injection: I have to inject myself with a similar thing to boost my white blood cells. As long as it goes into fatty tissue it doesn't matter where abouts on your tummy it goes. When I was in the hospital last year the nurses used to inject me in different places in my tummy area. So that is what I do now.

    1. Find some skin on your tummy that is a bit fatty (that is dead easy for me ha ha )
    2. Pinch it
    3. Stick the needle straight into it and plunge away.
    4. Pull out the needle and rub where it was. This helps to take the sting away.

    To be honest it doesn't really hurt and you soon get used to it. The medicine will obviously go where it needs to go.

    Take care Tina xxxx

    Fragmin
    I started on the Fragmin injections when I was in the hospital in Nov. 2011, they were doing twice a day, when I came home they gave me a larger dose and I do it once a day in the tummy, my only problem now is my insurance ran out because they are so expensive and I have to pay for them, they are $46 a shot, so unless I can get assistance they will have to come up with some other alternative.