Primary Peritoneal Cancer (part 2)
like so many others on this board, I would like to see a separate board for PPC. If you look at the only other thread with this title, it goes on for a long time I think because those of us with PPC are immediately drawn to discussing our shared experience.
I have some questions of others who have said they have PPC:
1. How do you know what 'stage' you're at? I've never been given a 'stage', though it was made clear from the beginning that the prognosis wasn't good and I was placed immediately on palliative care.
Than was in November. Now, after 9 treatments of carbo/taxol, not only has my CA125 come down from 1300+ to 17, but neither have I experienced any side effects from the chemo - except hair loss which is coming back now. I feel terrible for the woman's mother in that earlier thread who experienced terrible pain after her chemo, and I wonder if she has asked the doctor to try another type, or possibly surgery. Speaking from my experience, even though the prognosis hasn't changed as far as I know, they look like taking me off palliative until I *do* start to have symptems. Their time is better spent with those who are suffering most of all.
2. Ok, I keep seeing the words BRCA1 and BRCA2. Something about their being genetic. I've never heard about them before seeing this board. Is it something that I should bring up with my oncologist? And my sister or brother too? In our family, bowel cancer runs very strongly. In fact, we part of a national ongoing study of familial instances of colorectal cancers. My sister got it before turning 50. My grandparents, both sides, all had it but one, and the rest of my family have all had polyps. I'm the only one never to have been touched by it. Then I go and get this unusual one - PPC. I always did have to be the odd one out. Then again, coming here, I see that I'm not alone in that. Wish I were
3. I think it was Tina Brown who said that CT scans did show signs of tiny sand-like tumors on the peritoneum, but too small for surgery. My CT scans showed nothing at all. If it wasn't for the sample of fluid taken from my abdomen, they wouldn't know I had cancer. I wonder if others have been found that CT scans don't show up anything. And if not, how did your cancer respond to the chemo? Was it also carbo/taxol? It was Tina whose posts first drew me because, like her, I've only had chemo, so far only the one type, and also I had to have fluid drained from both my abdomen (4 litres, after a couple of weeks of massive doses of fluid tablets) and from my lung (1.2 litres). I expect that the future holds different treatments though. It would be nice to think that I could go into a happy remission then return to the carb/taxo with the same benefit and the same *lack* of side-effects.
From what I've read of others' experiences, that aint likely
AussieMaddie
Comments
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PPC questions
Hi AussieMaddie
I will try to answer your questions
1. Almost all of PPC is stage 3 & I can't for the life of me remember why. I am stage 4 because I had pleural effusion and although I haven't got cancer in or around my lungs, the fluid had cancer cells in it. I too was put on palliative cancer & I was told it can't be cured. I am pleased to read you are not suffering. Me neither - just had a bit of nausea & of course lost my hair
2. I know bowel cancer can run in families so I would ask to be screened for that. I am BRCA2 as my mum had breast cancer and eventually bowel cancer.
3. You are right my CT scan did show that the cancer was "seed like" and that there was no point in doing surgery. I wonder how they diagnosed you? I guess they tested the fluid drained but how did they know it was PPC & not anything else? I am pleased your CA125 came down as rapidly as it did.
I have a friend who had PPC & she has just celebrated her 3 1/2 year remission and is now on yearly check ups. I have just finished my second lot of carbo/taxol and my numbers came down from 1288 to 95.
My hair is growing back nicely and 9 weeks after the last chemo it is about 1 cm long. That doesn't sound very long but believe me it feels great. Got long hairs on my legs and my eyebrows are back to normal and I have longish eye lashes.
I am trying to make the most of this "chemo" free time but am a bit down about being overweight.
Take care Tina xx0 -
Tina Brown said:
PPC questions
Hi AussieMaddie
I will try to answer your questions
1. Almost all of PPC is stage 3 & I can't for the life of me remember why. I am stage 4 because I had pleural effusion and although I haven't got cancer in or around my lungs, the fluid had cancer cells in it. I too was put on palliative cancer & I was told it can't be cured. I am pleased to read you are not suffering. Me neither - just had a bit of nausea & of course lost my hair
2. I know bowel cancer can run in families so I would ask to be screened for that. I am BRCA2 as my mum had breast cancer and eventually bowel cancer.
3. You are right my CT scan did show that the cancer was "seed like" and that there was no point in doing surgery. I wonder how they diagnosed you? I guess they tested the fluid drained but how did they know it was PPC & not anything else? I am pleased your CA125 came down as rapidly as it did.
I have a friend who had PPC & she has just celebrated her 3 1/2 year remission and is now on yearly check ups. I have just finished my second lot of carbo/taxol and my numbers came down from 1288 to 95.
My hair is growing back nicely and 9 weeks after the last chemo it is about 1 cm long. That doesn't sound very long but believe me it feels great. Got long hairs on my legs and my eyebrows are back to normal and I have longish eye lashes.
I am trying to make the most of this "chemo" free time but am a bit down about being overweight.
Take care Tina xx
Thank you
Needed to add:
The only way they found that I had peritoneal cancer was when they tested the fluid which they took from my abdomen. That was the only way. I was *very* distended. The ended up draining me of 4 litres of fluid (and that was after they had tried to get my abdomen from making it by keeping me on a very restricted fluid intake of 1 litre a day and putting me on massive doses of fluid tablets (diuretics). They later drained one lung of about 1.2 litres of the same cancerous fluid. But, like you, since chemo started, it hasn't returned at all and I'm drinking normally. Being on so many fluid tablets was what gave me the worst constipation. Once I was cut down on those dramatically, I could use my bowels. Since then, apart from the hair loss (which, like yours, is still growing back) I've had no other symptoms. I don't know how they know that the fluid build up was caused by the peritoneum. I just know that no CT scan showed up anything. I was told that the tumours were too small to be seen. The oncologist wants me to have a PET scan later but I don't know when.
Yes, I can relate to the weight issue. Only too well.
Thank you again for your reply 0 -
I can relate to both you andAussieMaddie said:
Thank you
Needed to add:
The only way they found that I had peritoneal cancer was when they tested the fluid which they took from my abdomen. That was the only way. I was *very* distended. The ended up draining me of 4 litres of fluid (and that was after they had tried to get my abdomen from making it by keeping me on a very restricted fluid intake of 1 litre a day and putting me on massive doses of fluid tablets (diuretics). They later drained one lung of about 1.2 litres of the same cancerous fluid. But, like you, since chemo started, it hasn't returned at all and I'm drinking normally. Being on so many fluid tablets was what gave me the worst constipation. Once I was cut down on those dramatically, I could use my bowels. Since then, apart from the hair loss (which, like yours, is still growing back) I've had no other symptoms. I don't know how they know that the fluid build up was caused by the peritoneum. I just know that no CT scan showed up anything. I was told that the tumours were too small to be seen. The oncologist wants me to have a PET scan later but I don't know when.
Yes, I can relate to the weight issue. Only too well.
Thank you again for your reply
I can relate to both you and Tina. My cancer, like yours, couldn't be seen on CT. I had a bowel blockage at the time of admission but my CA125 was only 9. This has now gone down to 6 which doesn't show anything since the CA125 level is low normal. The reduction is connected with the abdomen settling down after I went into shock on entry to the hospital in March.
I have serous papillary primary peritoneal cancer. I was first diagnosed by the surgical team at my local hospital when they aspirated some fluid from my abdomen. It took nearly 10 days for the results to come back but when they did, the doctors saw that the ascites was malignant. Since then I have had a laparoscopy which showed that the cells were throughout the abdomen and on the extensive adhesions there too. They staged me at 3b but only because they can't confirm lesions on my liver and it appears a lesion on the lung doesn't seem to have grown since 2009. When the doctors operated, they couldn't get to the lymph nodes because of the adhesions so I was put on carboplatin which I started on Wednesday of this week. They may add taxol later as my doctors have said that carboplatin does 90% of the work and taxol seems to give a boost to that.
I was interested about the weight gain issue. Does the PPC cause weight gain just because of the fluid in the abdomen or is it something else? I know my weight is going up but I don't think I'm eating excessively or anything.
Good luck with everything. I have found lots of support from people here and I hope you do too. You're right about Tina. She has helped me a lot just by reading her journey.0 -
Comfortingwanttogetwellsoon said:I can relate to both you and
I can relate to both you and Tina. My cancer, like yours, couldn't be seen on CT. I had a bowel blockage at the time of admission but my CA125 was only 9. This has now gone down to 6 which doesn't show anything since the CA125 level is low normal. The reduction is connected with the abdomen settling down after I went into shock on entry to the hospital in March.
I have serous papillary primary peritoneal cancer. I was first diagnosed by the surgical team at my local hospital when they aspirated some fluid from my abdomen. It took nearly 10 days for the results to come back but when they did, the doctors saw that the ascites was malignant. Since then I have had a laparoscopy which showed that the cells were throughout the abdomen and on the extensive adhesions there too. They staged me at 3b but only because they can't confirm lesions on my liver and it appears a lesion on the lung doesn't seem to have grown since 2009. When the doctors operated, they couldn't get to the lymph nodes because of the adhesions so I was put on carboplatin which I started on Wednesday of this week. They may add taxol later as my doctors have said that carboplatin does 90% of the work and taxol seems to give a boost to that.
I was interested about the weight gain issue. Does the PPC cause weight gain just because of the fluid in the abdomen or is it something else? I know my weight is going up but I don't think I'm eating excessively or anything.
Good luck with everything. I have found lots of support from people here and I hope you do too. You're right about Tina. She has helped me a lot just by reading her journey.
Your journey is very comforting for me too as my mum has the ppc stage IV. She too had several scans which showed nothing and the cancer was found in the fluid of her abdomen and lungs bout without any visible tumors.
She too gain weight, but fluid has gone down as carbo/tox is doing its work. I am pleased to read that you do not suffer too much from chemo, please let that continue.
Mum too have not had surgery yet as doctors tell her that the chemo will do the work as the tumors are rather "dots spread out". Hope this will eventually put her into remission. She has gone down from CA124 1000 to 200 at the moment (after round two).
Thank you Tina for sharing the information about your friend that is celebrating her 3 1/2 remission! This made mum very happy and I think this will help her to fight!
Love,
Millie0 -
the dotsMillie2011 said:Comforting
Your journey is very comforting for me too as my mum has the ppc stage IV. She too had several scans which showed nothing and the cancer was found in the fluid of her abdomen and lungs bout without any visible tumors.
She too gain weight, but fluid has gone down as carbo/tox is doing its work. I am pleased to read that you do not suffer too much from chemo, please let that continue.
Mum too have not had surgery yet as doctors tell her that the chemo will do the work as the tumors are rather "dots spread out". Hope this will eventually put her into remission. She has gone down from CA124 1000 to 200 at the moment (after round two).
Thank you Tina for sharing the information about your friend that is celebrating her 3 1/2 remission! This made mum very happy and I think this will help her to fight!
Love,
Millie
Millie...
My cells are over the abdomen and when I asked whether they covered the whole lot, the doctor said that they were throughout the abdomen rather like having a bad case of childhood measles.
I'm very glad your Mum's CA125 has gone down as it's a good personal indicator for someone with an abnormal result.
Take good care....
Sue0 -
Hello everyonewanttogetwellsoon said:the dots
Millie...
My cells are over the abdomen and when I asked whether they covered the whole lot, the doctor said that they were throughout the abdomen rather like having a bad case of childhood measles.
I'm very glad your Mum's CA125 has gone down as it's a good personal indicator for someone with an abnormal result.
Take good care....
Sue
As much as I love the women on here who have Ovarian cancer, it is nice to correspond with women who have PPC like myself.
My oncologist described my cancer as "Seeding" that is spread all around the peritoneal walls. I think I had a little bit of ascites before I was diagnosed as my tummy swelled up, but I had 3 litres drained from around my right lung which tested positive for malignant cells. They didn't know where the cancer was and I had a CT scan which showed that all of my internal organs were clear, including my ovaries. I think it took them another week for them to discover PPC. I was told it is very rare and that is why it took them so long to find it.
The reason you get fluid/ascites is:
1. The cancer cells weep fluid. So where ever they are the fluid will seep out.
2. Everyone produces fluid all of the time inside the abdomen and around the lungs. For people without cancer that fluid drains away naturally. However if you have cancer the cancer cells break away and block up the drainage points so none of the fluid can drain away.
3. Once we start chemo the cells are attacked and killed off stopping the weeping and un-blocking the drainage points. Therefore if the fluid/ascites goes away it means the chemo is working
I am pleased to see so many CA125's being so low - this is really a good sign. Plus the fact that nothing can be seen on the CT scan is also a good sign. I was told by my oncologist that PET scans are good for looking for "a needle in a hay stack" as it lights up cancerous cells so the doctors can see them better.
Keep posting, lots of love xxxxx Tina0 -
thanks tina....Tina Brown said:Hello everyone
As much as I love the women on here who have Ovarian cancer, it is nice to correspond with women who have PPC like myself.
My oncologist described my cancer as "Seeding" that is spread all around the peritoneal walls. I think I had a little bit of ascites before I was diagnosed as my tummy swelled up, but I had 3 litres drained from around my right lung which tested positive for malignant cells. They didn't know where the cancer was and I had a CT scan which showed that all of my internal organs were clear, including my ovaries. I think it took them another week for them to discover PPC. I was told it is very rare and that is why it took them so long to find it.
The reason you get fluid/ascites is:
1. The cancer cells weep fluid. So where ever they are the fluid will seep out.
2. Everyone produces fluid all of the time inside the abdomen and around the lungs. For people without cancer that fluid drains away naturally. However if you have cancer the cancer cells break away and block up the drainage points so none of the fluid can drain away.
3. Once we start chemo the cells are attacked and killed off stopping the weeping and un-blocking the drainage points. Therefore if the fluid/ascites goes away it means the chemo is working
I am pleased to see so many CA125's being so low - this is really a good sign. Plus the fact that nothing can be seen on the CT scan is also a good sign. I was told by my oncologist that PET scans are good for looking for "a needle in a hay stack" as it lights up cancerous cells so the doctors can see them better.
Keep posting, lots of love xxxxx Tina
I see what you mean about the ascites which makes sense to me. When the doctors drained the ascites in March, they found that some of it was historical so it looks like it was going nowhere and the thought of it all draining naturally if the chemo works is really encouraging. Ascites to me is one of the hardness symptoms to deal with.
Lots of love too Tina. xxxx0 -
PPC Survivor
I am also a PPC, stage 3C survivor... it will be two years on July 27th. My cancer was found when I went in for an elective surgery for a fibroid. Once it was coinfirmed that it was cancer, a gyno-ocologist came in and did exploratory surgery.... I had a full hysterectomy. I then had an IP port and a chest port put in and started chemo four weeks later. Unfortuately, because of an infection, I was only able to get through 1 1/2 treatments through the IP port before it had to be removed. However, I continued with my six rounds of carbo and taxol through the chest port. I now see my oncologist every three months for an exam and CA125 test. I also just had a PET CT that came back clear of any cancer.
Also, because of a family history of breast cancer, I was tested for the BRCA gene. Fortunately, I am not a carrier.
I am so happy to hear you have not had any major side effects from your chemo... I had horrible pain and fatigue.
Saying a prayer for all the women fighting this nasty disease!0 -
yes, it is ...South Jersey said:PPC Survivor
I am also a PPC, stage 3C survivor... it will be two years on July 27th. My cancer was found when I went in for an elective surgery for a fibroid. Once it was coinfirmed that it was cancer, a gyno-ocologist came in and did exploratory surgery.... I had a full hysterectomy. I then had an IP port and a chest port put in and started chemo four weeks later. Unfortuately, because of an infection, I was only able to get through 1 1/2 treatments through the IP port before it had to be removed. However, I continued with my six rounds of carbo and taxol through the chest port. I now see my oncologist every three months for an exam and CA125 test. I also just had a PET CT that came back clear of any cancer.
Also, because of a family history of breast cancer, I was tested for the BRCA gene. Fortunately, I am not a carrier.
I am so happy to hear you have not had any major side effects from your chemo... I had horrible pain and fatigue.
Saying a prayer for all the women fighting this nasty disease!
This disease is nasty ... there's no doubt of that. My prayers go out to other women too.
I'm on day 4 now so I come off the steroid tablets tomorrow when I'm told I'll feel worse. I have a lot of nausea and tiredness at the moment, but I don't think I'll ever be frightened of the chemo again. I've been through far worse as I've been in and out of hospital since an early age. Then again, you might ask me later in the course of my treatment and I'll totally deny having said that at all!
The doctors have told me that my care is palliative. Does that mean that they just try to get the inflammation down or can I go into remission? I know of many women on with PPC and ovarian cancer who say that they do go into remission but it comes back.
One of my main problems apart from the cancer is the adhesions. My abdomen is so full of them because of previous infections and surgeries and because of the cancer itself, that I often can't get it to work properly and I've been hospitalized five times with this so far. It's the 'nil by mouth and saline drip' routine then. I'm hoping they may be able to do something about them if I do go into remission, but here's hoping. It's early days yet.
Good luck to you and I'm praying things work out for you and all of us here.0 -
Our own mini PPC board!wanttogetwellsoon said:yes, it is ...
This disease is nasty ... there's no doubt of that. My prayers go out to other women too.
I'm on day 4 now so I come off the steroid tablets tomorrow when I'm told I'll feel worse. I have a lot of nausea and tiredness at the moment, but I don't think I'll ever be frightened of the chemo again. I've been through far worse as I've been in and out of hospital since an early age. Then again, you might ask me later in the course of my treatment and I'll totally deny having said that at all!
The doctors have told me that my care is palliative. Does that mean that they just try to get the inflammation down or can I go into remission? I know of many women on with PPC and ovarian cancer who say that they do go into remission but it comes back.
One of my main problems apart from the cancer is the adhesions. My abdomen is so full of them because of previous infections and surgeries and because of the cancer itself, that I often can't get it to work properly and I've been hospitalized five times with this so far. It's the 'nil by mouth and saline drip' routine then. I'm hoping they may be able to do something about them if I do go into remission, but here's hoping. It's early days yet.
Good luck to you and I'm praying things work out for you and all of us here.
*** Please NOTE:
I was sure that I had posted this long piece earlier. I've waited but it hasn't shown up soi am taking a chance that for some reason it didn't go ahead and am resending it now. Hope that it doesn't prove to become a duplicate ***
...............
Hi to all and thank you for making me feel so much part of the community here
wanttogetwellsoon:
It took nearly 10 days for your results from the fluid to come back. It took mine nearly 14. (They said it was infection at first) Seems that the fluid must not be easily analysed. Or maybe it's a case of PPS (again) not being easily diagnosed. I've not had a laparoscopy or surgery so far, just CT scans and they showed nothing at all, anywhere. As far as weight gain, the only reason that I've gained weight is because of my binge eating. And I wouldn't have got away with that if I had had any nausea. I do believe though that steroids are often (always?) used and they are known to put on weight. One of the meds I was given to prevent nausea, Dexamethasone, was said to put on weight, but since I don't get nauseas, I never needed that. Maybe it's one that you take. Certainly the fluid puts on weight. That comes off when they drain it.
Your cells, like 'measles' sound exactly the way that Tina describes hers. Nothing could be seen on mine. They could only find it in the fluid sample.
The ascites wasn't hard for me to deal with except that, unlike my usual overweight, it caused me to lose balance and I had three falls, two of them in hospital. Fortunately, didn't hurt myself (Too big to land hard!)
Reading your last post here, I see that you've been on steroids. They certainly will have caused you to put on weight. But I don't understand why you will feel worse when you come off them.
I'm glad to hear that you won't be frightened of the chemo again. I think fear is one of the worst "side-effects" of having this cancer. I know that I was terrified of starting chemo. I put off having it for the first fortnight. Then, I slept right through it!
In hospitals so often. Maybe others know why. I don't.
As for being palliative, I know that Tina was told the same thing, and so was I. Palliative means that the symptoms can be managed, but the cause not cured. And some of us are managed for longer periods of time with the help of all the treatments. I asked my oncologist about remission. In his typically elusive way, he just said "What is remission? Having a very low CA125 count might be regarded as remission." I've read in these forums that some people have been found to have tumours growing even when their CA125 levels have been low, so I don't know. Somebody else might. I do know, as you say, that even after the CA125 count does go very low, that it can come back up again, that the cancer doesn't stay in remission for very long, like other cancers can do. Tina knows someone in remission for years, but I think it's more common to be months. I stand to be corrected on that though.
My sister had bowel cancer before turning 50 and some years later became as sick again, but this time it was adhesions. The operation to repair those was as large as the original operation, so I can imagine what you must have suffered over the years with yours. I'm so sorry. I too will be hoping that you will soon go into remission and *will* have the adhesions seen to fully.
Good luck to you too
Millie:
I'm glad to see that the carbo/taxol is helping your mother as it is me And also to see that her CA125 is coming down so well. Is she mostly free of pain and nausea? I do hope so. Seems like Tina is a bit like our head cheerleader - I'm glad of her sound advice too (Just wish that she, and all of us, had no need to know of it.)
Tina:
3 litres from the lung! I'm surprised that a lung could hold that much. They only got 1.2 litres from mine. But, like you, the chemo has stopped it coming back. And they took a long time to find yours too. Seems to be common among us.
Thank you for explaining about PET scans. It gives me more confidence that, when I have one, it will show up more than they've been able to see so far. He doesn't want to do anything just yet, while I'm responding so well to the carbo/taxol. There's a part of me that wants them to look more into it, but the doctor knows best I suppose. I'll ask him more when I see him next on the 18th.
South Jersey:
I'm sorry to learn of your infection. It would have made things harder, and take longer to heal, especially as you had such a terrible time having chemo. Sad also to hear, like so many here on these boards, you've had extensive surgery. I've not had any so far, but doctor has said it's a possibility in future. Maybe after they do the PET scan, if that shows up something.
You only have to see your doctor every three months. That sounds like you're doing well. I see mine every 4 weeks, between chemo cycles. It's *wonderful* that your PET scan came back clear, and that you're also not a carrier of the BRCA gene. Congratulations!
Yes, I have been blessed not to have the side effects of the chemo, except hair loss which is growing back. Losing it never bothered me anyway. My sister-in-law surprised me by giving me a hat she had sewn together - and she's not even a confident sewer! After she had a bad fall and hurt her hand, a friend made me 10 more, two each in different colours. I want to have made a hat rack (the sort that spins around) to show them all off. The handyman who was to have made it hasn't returned, so I'll find another. It will be a pole - lavender coloured - with short pieces sticking out from it, and encircling it all the way to the top from which to hang the hats. I'll stand it just inside the front door so I can quickly grab one as I leave. More than once I've rushed out of the house totally bald!
Love and hugs to you all (((((( )))))0 -
Hi AussieMaddieAussieMaddie said:Our own mini PPC board!
*** Please NOTE:
I was sure that I had posted this long piece earlier. I've waited but it hasn't shown up soi am taking a chance that for some reason it didn't go ahead and am resending it now. Hope that it doesn't prove to become a duplicate ***
...............
Hi to all and thank you for making me feel so much part of the community here
wanttogetwellsoon:
It took nearly 10 days for your results from the fluid to come back. It took mine nearly 14. (They said it was infection at first) Seems that the fluid must not be easily analysed. Or maybe it's a case of PPS (again) not being easily diagnosed. I've not had a laparoscopy or surgery so far, just CT scans and they showed nothing at all, anywhere. As far as weight gain, the only reason that I've gained weight is because of my binge eating. And I wouldn't have got away with that if I had had any nausea. I do believe though that steroids are often (always?) used and they are known to put on weight. One of the meds I was given to prevent nausea, Dexamethasone, was said to put on weight, but since I don't get nauseas, I never needed that. Maybe it's one that you take. Certainly the fluid puts on weight. That comes off when they drain it.
Your cells, like 'measles' sound exactly the way that Tina describes hers. Nothing could be seen on mine. They could only find it in the fluid sample.
The ascites wasn't hard for me to deal with except that, unlike my usual overweight, it caused me to lose balance and I had three falls, two of them in hospital. Fortunately, didn't hurt myself (Too big to land hard!)
Reading your last post here, I see that you've been on steroids. They certainly will have caused you to put on weight. But I don't understand why you will feel worse when you come off them.
I'm glad to hear that you won't be frightened of the chemo again. I think fear is one of the worst "side-effects" of having this cancer. I know that I was terrified of starting chemo. I put off having it for the first fortnight. Then, I slept right through it!
In hospitals so often. Maybe others know why. I don't.
As for being palliative, I know that Tina was told the same thing, and so was I. Palliative means that the symptoms can be managed, but the cause not cured. And some of us are managed for longer periods of time with the help of all the treatments. I asked my oncologist about remission. In his typically elusive way, he just said "What is remission? Having a very low CA125 count might be regarded as remission." I've read in these forums that some people have been found to have tumours growing even when their CA125 levels have been low, so I don't know. Somebody else might. I do know, as you say, that even after the CA125 count does go very low, that it can come back up again, that the cancer doesn't stay in remission for very long, like other cancers can do. Tina knows someone in remission for years, but I think it's more common to be months. I stand to be corrected on that though.
My sister had bowel cancer before turning 50 and some years later became as sick again, but this time it was adhesions. The operation to repair those was as large as the original operation, so I can imagine what you must have suffered over the years with yours. I'm so sorry. I too will be hoping that you will soon go into remission and *will* have the adhesions seen to fully.
Good luck to you too
Millie:
I'm glad to see that the carbo/taxol is helping your mother as it is me And also to see that her CA125 is coming down so well. Is she mostly free of pain and nausea? I do hope so. Seems like Tina is a bit like our head cheerleader - I'm glad of her sound advice too (Just wish that she, and all of us, had no need to know of it.)
Tina:
3 litres from the lung! I'm surprised that a lung could hold that much. They only got 1.2 litres from mine. But, like you, the chemo has stopped it coming back. And they took a long time to find yours too. Seems to be common among us.
Thank you for explaining about PET scans. It gives me more confidence that, when I have one, it will show up more than they've been able to see so far. He doesn't want to do anything just yet, while I'm responding so well to the carbo/taxol. There's a part of me that wants them to look more into it, but the doctor knows best I suppose. I'll ask him more when I see him next on the 18th.
South Jersey:
I'm sorry to learn of your infection. It would have made things harder, and take longer to heal, especially as you had such a terrible time having chemo. Sad also to hear, like so many here on these boards, you've had extensive surgery. I've not had any so far, but doctor has said it's a possibility in future. Maybe after they do the PET scan, if that shows up something.
You only have to see your doctor every three months. That sounds like you're doing well. I see mine every 4 weeks, between chemo cycles. It's *wonderful* that your PET scan came back clear, and that you're also not a carrier of the BRCA gene. Congratulations!
Yes, I have been blessed not to have the side effects of the chemo, except hair loss which is growing back. Losing it never bothered me anyway. My sister-in-law surprised me by giving me a hat she had sewn together - and she's not even a confident sewer! After she had a bad fall and hurt her hand, a friend made me 10 more, two each in different colours. I want to have made a hat rack (the sort that spins around) to show them all off. The handyman who was to have made it hasn't returned, so I'll find another. It will be a pole - lavender coloured - with short pieces sticking out from it, and encircling it all the way to the top from which to hang the hats. I'll stand it just inside the front door so I can quickly grab one as I leave. More than once I've rushed out of the house totally bald!
Love and hugs to you all (((((( )))))
Whereabouts
Hi AussieMaddie
Whereabouts in Australia are you? I am in Adelaide and also have PPC. Diagnosed Oct 2008 and finished chemo March 2009 and now back on chemo for enlarged lymph nodes and a growth in my pelvis.
Jenny0 -
Fellow AussieTasgirl said:Hi AussieMaddie
Whereabouts
Hi AussieMaddie
Whereabouts in Australia are you? I am in Adelaide and also have PPC. Diagnosed Oct 2008 and finished chemo March 2009 and now back on chemo for enlarged lymph nodes and a growth in my pelvis.
Jenny
Hi Jenny,
I'm in Melbourne, more quiet than Sydney but perhaps not more quiet than Adelaide. I don't know. I've never been beyond Melbourne, except to Sydney once. Very much a homebody. And, to go by your photo, live a very different life from your own. I take it that you're a marathon runner. The treatments must badly cut into your exercise routine.
Which chemo are you on at present? I'm still on carbo/taxol which has proved very effective so far in bringing down my CA125.
Take care
AussieMaddy0 -
Hi AussieMaddyAussieMaddie said:Fellow Aussie
Hi Jenny,
I'm in Melbourne, more quiet than Sydney but perhaps not more quiet than Adelaide. I don't know. I've never been beyond Melbourne, except to Sydney once. Very much a homebody. And, to go by your photo, live a very different life from your own. I take it that you're a marathon runner. The treatments must badly cut into your exercise routine.
Which chemo are you on at present? I'm still on carbo/taxol which has proved very effective so far in bringing down my CA125.
Take care
AussieMaddy
I had dose
Hi AussieMaddy
I had dose dense carbo/taxol to start and now on Gemzar/Carbo. The running is getting very hard even though I have only had 2 treatments so far so I am lucky that I have just finished a marathon.
I have my CA125 taken tomorrow and will see how it is going. It was 76 a month ago so am hoping that the 2 treatments I have had has helped to bring it down.
I really love Melbourne and lived there for a while when I was young and stupid...
Hope you are well Jenny0 -
You've still been running!Tasgirl said:Hi AussieMaddy
I had dose
Hi AussieMaddy
I had dose dense carbo/taxol to start and now on Gemzar/Carbo. The running is getting very hard even though I have only had 2 treatments so far so I am lucky that I have just finished a marathon.
I have my CA125 taken tomorrow and will see how it is going. It was 76 a month ago so am hoping that the 2 treatments I have had has helped to bring it down.
I really love Melbourne and lived there for a while when I was young and stupid...
Hope you are well Jenny
Heavens!
Will be thinking of you tomorrow when you have your next CA125 test. Hope it is down.
Why did you stop the carbo/taxol? Was it because you went into some kind of remission?
I'm still on carbo/taxol, with my CA125 down from an original 1300+ to 17 at last count. See my onc. for results of next CA125 on 18th.
Be well,
AussieMaddie0 -
Running?AussieMaddie said:You've still been running!
Heavens!
Will be thinking of you tomorrow when you have your next CA125 test. Hope it is down.
Why did you stop the carbo/taxol? Was it because you went into some kind of remission?
I'm still on carbo/taxol, with my CA125 down from an original 1300+ to 17 at last count. See my onc. for results of next CA125 on 18th.
Be well,
AussieMaddie
I have to confess, I consider walking an accomplishment!
Anyway, with so many with PPC on this thread I thought I would share a little of my story. I was diagnosed Aug 2010 after months of negative tests and symptoms of pain and constipation and eventually loss of weight. I am beig treated at Cleveland Clinic and my initial ca-125 was 149. I had the seeding over the abdomen like Tina but I also had a small tumor growing from the abdomen into the colon. I was initially treated with 4 rounds of Carbo. (The doc didnt think my digestive system could handle Taxol at the time.) I went home from the hospital drinking Ensure and was barely able to get that down. Continued to lose a lb a day till the chemo kicked in a week or so later and the blockages opened and I had less pain and gradually was able to drink more and eventually able to eat food. In Dec 2010 I was able to have robotic surgery for the debulking and furthur biopsies, etc. At that time they found very little cancer but I was staged at 3c. The robotic surgery is so much less invasive and I was using a Fentenyl patch so I had almost no discomfort. (Being a nurse I believe in using whatever it takes to keep comfortable!) I was able to get right back to chemo quickly and then had 6 rounds of Carbo/Taxol with the taxol given weekly.
Chemo zonked me for about 4-5 days at first and later it was not such a problem. My hair fell out and I got some aching bones and my ears ring but that was about it. Towards the end of the 10 months of chemo I was left very tired and weak but have faith that I will start feeling better soon. I had to give up my position at work but I can work as an extra when I feel like it and they need help. That is good enough for now. They are good about just letting me work the 4 hours when they are the busiest but I am not locked into anything. I cant imagine working and going thru chemo but I know many do.
Well my CT scan last week was negative and my ca-125 last month was 9 so I am in my first remission! Praise the Lord!
I am having genetic testing done as my mother had breast cancer. I am waiting on those results and I am going to apply for the vaccine clinical trial starting at Cleveland Clinic.
I will keep you posted as to how things go.
Keep me in your prayers and I will keep you in mine!
God Bless...
Linda0 -
Hi AussieMaddieAussieMaddie said:You've still been running!
Heavens!
Will be thinking of you tomorrow when you have your next CA125 test. Hope it is down.
Why did you stop the carbo/taxol? Was it because you went into some kind of remission?
I'm still on carbo/taxol, with my CA125 down from an original 1300+ to 17 at last count. See my onc. for results of next CA125 on 18th.
Be well,
AussieMaddie
I finished
Hi AussieMaddie
I finished carbo/taxol in March 2009 and was being monitored with CA125 but I felt a lump in my groin last year which turned out to be an enlarged lymph node. We just kept an eye on the lymph nodes but it was not until a growth was found in my pelvis in January and had doubled in size in May that I decided to go back on chemo. My CA125 in January was 42 and in May was 76 - the results weren't back when I had chemo yesterday so do not know if it has gone down.
Good luck with your results
Jenny0 -
Thinking of you..lulu1010 said:Running?
I have to confess, I consider walking an accomplishment!
Anyway, with so many with PPC on this thread I thought I would share a little of my story. I was diagnosed Aug 2010 after months of negative tests and symptoms of pain and constipation and eventually loss of weight. I am beig treated at Cleveland Clinic and my initial ca-125 was 149. I had the seeding over the abdomen like Tina but I also had a small tumor growing from the abdomen into the colon. I was initially treated with 4 rounds of Carbo. (The doc didnt think my digestive system could handle Taxol at the time.) I went home from the hospital drinking Ensure and was barely able to get that down. Continued to lose a lb a day till the chemo kicked in a week or so later and the blockages opened and I had less pain and gradually was able to drink more and eventually able to eat food. In Dec 2010 I was able to have robotic surgery for the debulking and furthur biopsies, etc. At that time they found very little cancer but I was staged at 3c. The robotic surgery is so much less invasive and I was using a Fentenyl patch so I had almost no discomfort. (Being a nurse I believe in using whatever it takes to keep comfortable!) I was able to get right back to chemo quickly and then had 6 rounds of Carbo/Taxol with the taxol given weekly.
Chemo zonked me for about 4-5 days at first and later it was not such a problem. My hair fell out and I got some aching bones and my ears ring but that was about it. Towards the end of the 10 months of chemo I was left very tired and weak but have faith that I will start feeling better soon. I had to give up my position at work but I can work as an extra when I feel like it and they need help. That is good enough for now. They are good about just letting me work the 4 hours when they are the busiest but I am not locked into anything. I cant imagine working and going thru chemo but I know many do.
Well my CT scan last week was negative and my ca-125 last month was 9 so I am in my first remission! Praise the Lord!
I am having genetic testing done as my mother had breast cancer. I am waiting on those results and I am going to apply for the vaccine clinical trial starting at Cleveland Clinic.
I will keep you posted as to how things go.
Keep me in your prayers and I will keep you in mine!
God Bless...
Linda
You are indeed in my prayers, Linda
(((( hugs ))))
AussieMaddie0 -
All fingers and toes crosssed, JennyTasgirl said:Hi AussieMaddie
I finished
Hi AussieMaddie
I finished carbo/taxol in March 2009 and was being monitored with CA125 but I felt a lump in my groin last year which turned out to be an enlarged lymph node. We just kept an eye on the lymph nodes but it was not until a growth was found in my pelvis in January and had doubled in size in May that I decided to go back on chemo. My CA125 in January was 42 and in May was 76 - the results weren't back when I had chemo yesterday so do not know if it has gone down.
Good luck with your results
Jenny
Just wanted you to know that I'll be wishing for a good outcome fom your CA125, and cheering you on, Jenny
xxx
AussieMaddie0 -
your journeylulu1010 said:Running?
I have to confess, I consider walking an accomplishment!
Anyway, with so many with PPC on this thread I thought I would share a little of my story. I was diagnosed Aug 2010 after months of negative tests and symptoms of pain and constipation and eventually loss of weight. I am beig treated at Cleveland Clinic and my initial ca-125 was 149. I had the seeding over the abdomen like Tina but I also had a small tumor growing from the abdomen into the colon. I was initially treated with 4 rounds of Carbo. (The doc didnt think my digestive system could handle Taxol at the time.) I went home from the hospital drinking Ensure and was barely able to get that down. Continued to lose a lb a day till the chemo kicked in a week or so later and the blockages opened and I had less pain and gradually was able to drink more and eventually able to eat food. In Dec 2010 I was able to have robotic surgery for the debulking and furthur biopsies, etc. At that time they found very little cancer but I was staged at 3c. The robotic surgery is so much less invasive and I was using a Fentenyl patch so I had almost no discomfort. (Being a nurse I believe in using whatever it takes to keep comfortable!) I was able to get right back to chemo quickly and then had 6 rounds of Carbo/Taxol with the taxol given weekly.
Chemo zonked me for about 4-5 days at first and later it was not such a problem. My hair fell out and I got some aching bones and my ears ring but that was about it. Towards the end of the 10 months of chemo I was left very tired and weak but have faith that I will start feeling better soon. I had to give up my position at work but I can work as an extra when I feel like it and they need help. That is good enough for now. They are good about just letting me work the 4 hours when they are the busiest but I am not locked into anything. I cant imagine working and going thru chemo but I know many do.
Well my CT scan last week was negative and my ca-125 last month was 9 so I am in my first remission! Praise the Lord!
I am having genetic testing done as my mother had breast cancer. I am waiting on those results and I am going to apply for the vaccine clinical trial starting at Cleveland Clinic.
I will keep you posted as to how things go.
Keep me in your prayers and I will keep you in mine!
God Bless...
Linda
Hi Linda...
I read your story with interest. Yours is very similar to mine. I was in hospital in March (which is when I was diagnosed) and couldn't keep anything down. It was nil by mouth for 7 days and to be honest, I couldn't have cared if they'd said I couldn't ever eat again I felt that low. My abdomen is full of adhesions which have cancer cells on them too. Everything is stuck together but I feel that my first round of chemo has resulted in a reduction in the inflammation. My doctors haven't said that yet because I haven't seen them yet, but I feel so much better and the pain is subsiding. I'm happy if my bowel is working which I know sounds emotive but it's the truth. I use one sachet of an orange drink called Movicol (I think that's the name) which I get on prescription. I know it's best not to rely on such things but I'm so afraid of having another bowel blockage because I've had five quite serious episodes over the last four years. My doctor agrees that I need help in that way. Every morning, I get up and drink two large cups of warm tea and massage my abdomen. Since I find it difficult to walk very far (which helps to mobilise the bowel), I find for me, massaging serves a similar function. I pray you'll be ok ...
Love
Sue0
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