Newly diagnosed

seatown
seatown Member Posts: 261 Member
in Peritoneal Cancer #1
I was diagnosed with primary peritoneal carcinomatosis in July 2012 & began chemotherapy on taxol & carboplatin immediately. I didn't have surgery, I think because the disease was too extensive although my oncologist didn't say that explicitly. My CA 125 marker has gone from about 2700 on diagnosis, to 2400 a few weeks later, to 1650 a few weeks after that, to 1000 most recently. Had to forego the last scheduled chemo due to tingling & numbness in my limbs, which my oncologist said was due to taxol toxicity. He said he would have expected the numbness & tingling after a longer time on taxol. My 1st PET scan in July showed some spots on liver & involvement of lymph nodes as well as growths on the peritoneum itself. Had my 2nd PET scan yesterday; this afternoon will hear the results & also a revised plan for chemo.

I like my oncologist very much, except I would like more info. He answers all my questions, but he has commented that "sometimes patients get inundated with too much information." Not as far as I'm concerned! Would also be interested in recent survival rates for peritoneal cancer patients. The data I've seen seems more than a decade old.

Finally--would be interested in hearing from other peritoneal cancer patients. How do you come to terms with the diagnosis?

Comments

  • PatsieD
    PatsieD Member Posts: 99
    #2
    Newly diagnosed
    Hi there Seatown... I was glad to hear that your numbers are coming down. It's hard isn't it when you get the news. When I was first told, I was in shock and found it hard to deal with but having others here helped me. First of all, I wouldn't look at the statistics online. The prognosis seems to be poor for some types of the disease but it really depends on where you were staged at the time of diagnosis, the type of cancer you have, where it is, whether it is primary disease or not, and how you respond to treatment and to the different types of drugs. Some types are drug resistant though some people have a good response even in this case. I wish I hadn't looked online at all because you will get old information. My cancer nurse tells me that new drugs are coming out all the time and PPC for some people is becoming a chronic illness. That all being said, I wouldn't like to take away the seriousness of it all because that would be stretching the truth. I was told that I had between several months and two years to live at the time of diagnosis without treatment. My cancer is resistant to carboplatin but I had a partial response. The illness is throughout the abdomen and in the lung but I'm feeling much better now... more than I could ever have expected. There are people here who have the disease and are coping really well and have turned my feelings of hopeless to a realistic idea that I should try to get fitter and live as normal a life as I can .. which I am. That's my aim really. To turn my life round. Thank goodness we have each other.
  • seatown
    seatown Member Posts: 261 Member
    #3
    PatsieD said:

    Newly diagnosed
    Hi there Seatown... I was glad to hear that your numbers are coming down. It's hard isn't it when you get the news. When I was first told, I was in shock and found it hard to deal with but having others here helped me. First of all, I wouldn't look at the statistics online. The prognosis seems to be poor for some types of the disease but it really depends on where you were staged at the time of diagnosis, the type of cancer you have, where it is, whether it is primary disease or not, and how you respond to treatment and to the different types of drugs. Some types are drug resistant though some people have a good response even in this case. I wish I hadn't looked online at all because you will get old information. My cancer nurse tells me that new drugs are coming out all the time and PPC for some people is becoming a chronic illness. That all being said, I wouldn't like to take away the seriousness of it all because that would be stretching the truth. I was told that I had between several months and two years to live at the time of diagnosis without treatment. My cancer is resistant to carboplatin but I had a partial response. The illness is throughout the abdomen and in the lung but I'm feeling much better now... more than I could ever have expected. There are people here who have the disease and are coping really well and have turned my feelings of hopeless to a realistic idea that I should try to get fitter and live as normal a life as I can .. which I am. That's my aim really. To turn my life round. Thank goodness we have each other.

    Thanks for your reply
    Thank you, PatsieD, for your thoughtful reply. You have a lot of good advice. I am at peace with the diagnosis -- perhaps because I have been responding well to treatment. I started on taxol & carboplatin immediately & have been feeling well until late August, when I developed extreme numbness & tingling in my limbs due to taxol toxicity, my oncologist says. He adds he would expect these toxic effects after more time on taxol -- but, long story short, things are better now & the taxol frequency will be reduced slightly.

    My latest news is good. Below is the summary I posted yesterday for family & friends on Caring Bridge re: my latest PET scan.

    This afternoon as I arrived at AZ Oncology, the oncologist called to me from the far end of the long hallway of exam rooms: “I’ve got great news for you!” And he did indeed.

    Yesterday’s PET scan showed the largest growth—or as the report calls it, “the hypermetabolic mesenteric/peritoneal masslike focus”—in my abdomen, which had measured 21 x 3 cm, now measures only 8 x 1.6 cm. Previously, I’d been told the July PET scan showed numerous additional areas of malignancy on my peritoneum. But quoting the report further: “Numerous other small hypermetabolic peritoneal deposits seen on the earlier study are no longer apparent/hypermetabolic.” THEY'RE GONE! A malignant spot seen on my liver in the earlier PET scan is “no longer apparent,” although a benign liver cyst remains. And the 2 enlarged lymph nodes “have decreased in size considerably.”

    All this progress means the chemotherapy is obviously working, the oncologist says. But he thinks I should continue to receive chemo until the end of the year as originally outlined, with a schedule of 2 weekly chemo sessions followed by 2 weeks off—instead of 3 weeks on, 1 week off as originally scheduled until the numbness & tingling resulting from Taxol toxicity occurred after my last chemo session.

    I asked if I might someday expect to learn from a PET scan that the large tumor had not only shrunk but disappeared completely, as the smaller ones apparently have. Yes, he said. "There’s every reason to look for remission,” he said. “The question will always be, remission for how long? But remission for some patients could be for years—so why not for you?”

    Why not indeed?
  • PatsieD
    PatsieD Member Posts: 99
    #4
    seatown said:

    Thanks for your reply
    Thank you, PatsieD, for your thoughtful reply. You have a lot of good advice. I am at peace with the diagnosis -- perhaps because I have been responding well to treatment. I started on taxol & carboplatin immediately & have been feeling well until late August, when I developed extreme numbness & tingling in my limbs due to taxol toxicity, my oncologist says. He adds he would expect these toxic effects after more time on taxol -- but, long story short, things are better now & the taxol frequency will be reduced slightly.

    My latest news is good. Below is the summary I posted yesterday for family & friends on Caring Bridge re: my latest PET scan.

    This afternoon as I arrived at AZ Oncology, the oncologist called to me from the far end of the long hallway of exam rooms: “I’ve got great news for you!” And he did indeed.

    Yesterday’s PET scan showed the largest growth—or as the report calls it, “the hypermetabolic mesenteric/peritoneal masslike focus”—in my abdomen, which had measured 21 x 3 cm, now measures only 8 x 1.6 cm. Previously, I’d been told the July PET scan showed numerous additional areas of malignancy on my peritoneum. But quoting the report further: “Numerous other small hypermetabolic peritoneal deposits seen on the earlier study are no longer apparent/hypermetabolic.” THEY'RE GONE! A malignant spot seen on my liver in the earlier PET scan is “no longer apparent,” although a benign liver cyst remains. And the 2 enlarged lymph nodes “have decreased in size considerably.”

    All this progress means the chemotherapy is obviously working, the oncologist says. But he thinks I should continue to receive chemo until the end of the year as originally outlined, with a schedule of 2 weekly chemo sessions followed by 2 weeks off—instead of 3 weeks on, 1 week off as originally scheduled until the numbness & tingling resulting from Taxol toxicity occurred after my last chemo session.

    I asked if I might someday expect to learn from a PET scan that the large tumor had not only shrunk but disappeared completely, as the smaller ones apparently have. Yes, he said. "There’s every reason to look for remission,” he said. “The question will always be, remission for how long? But remission for some patients could be for years—so why not for you?”

    Why not indeed?

    Hi there Seatown... I was thrilled to hear your news. And, yes, indeed, why not you? This disease is hard to live with and the longer you can stay in a remission type state, the better. It's not easy having the chemo. Well, I had the carboplatin on its own, and I found that difficult enough, but it's something I've come to accept. I was surprised how much better I felt after my bloods recovered from it all and my muscles started to get stronger as I became more active. I don't think I was expecting a recovery as such. More a levelling out and not too much progress was my aim. My consultant says that she doesn't use the word remission any longer and the term is only used for some types of childhood cancers. I've no idea why. My disease was reduced and didn't go away completely but the cells seem to be switched off or sleepy although there has been slight growth. I call it knocking them for six and I've now been knocking them for six since September 2011 which has taken me completely by surprise. The longer I hold out, the greater chance I have of using the original carboplatin even with platinum resistant disease - which mine is. How much longer this state will carry on, nobody knows. My consultant says that I may find that I have aggressive episodes but, apart from when I was diagnosed in March 2011, I don't seem to be having symptoms of that. I have general symptoms of the disease, however, like a slight wheeze from slight fluid build up in the lungs, a sore abdomen from the adhesions I have and from the disease itself and fatigue, but I'm grateful to be in this state which is liveable with. Some friends on here seem to cope much better than I have and are a lot more active. My nurse says that it's not like ER on television and when I asked what she meant, she said that there are many people living with the disease who are living normal lives... even peritoneal which got me thinking a lot more positive about it all. Good luck to you and, again, I can't say how much I'm happy at your progress so far. x
  • JulieL
    JulieL Member Posts: 141
    #5
    seatown said:

    Thanks for your reply
    Thank you, PatsieD, for your thoughtful reply. You have a lot of good advice. I am at peace with the diagnosis -- perhaps because I have been responding well to treatment. I started on taxol & carboplatin immediately & have been feeling well until late August, when I developed extreme numbness & tingling in my limbs due to taxol toxicity, my oncologist says. He adds he would expect these toxic effects after more time on taxol -- but, long story short, things are better now & the taxol frequency will be reduced slightly.

    My latest news is good. Below is the summary I posted yesterday for family & friends on Caring Bridge re: my latest PET scan.

    This afternoon as I arrived at AZ Oncology, the oncologist called to me from the far end of the long hallway of exam rooms: “I’ve got great news for you!” And he did indeed.

    Yesterday’s PET scan showed the largest growth—or as the report calls it, “the hypermetabolic mesenteric/peritoneal masslike focus”—in my abdomen, which had measured 21 x 3 cm, now measures only 8 x 1.6 cm. Previously, I’d been told the July PET scan showed numerous additional areas of malignancy on my peritoneum. But quoting the report further: “Numerous other small hypermetabolic peritoneal deposits seen on the earlier study are no longer apparent/hypermetabolic.” THEY'RE GONE! A malignant spot seen on my liver in the earlier PET scan is “no longer apparent,” although a benign liver cyst remains. And the 2 enlarged lymph nodes “have decreased in size considerably.”

    All this progress means the chemotherapy is obviously working, the oncologist says. But he thinks I should continue to receive chemo until the end of the year as originally outlined, with a schedule of 2 weekly chemo sessions followed by 2 weeks off—instead of 3 weeks on, 1 week off as originally scheduled until the numbness & tingling resulting from Taxol toxicity occurred after my last chemo session.

    I asked if I might someday expect to learn from a PET scan that the large tumor had not only shrunk but disappeared completely, as the smaller ones apparently have. Yes, he said. "There’s every reason to look for remission,” he said. “The question will always be, remission for how long? But remission for some patients could be for years—so why not for you?”

    Why not indeed?

    Good news!
    Hi Seatown

    Yes so good you have found this site and I am sure you will find it as helpful and reassuring as I have (diagnosed Dec 2011). So glad that your initial results from chemo have showed such good reductions in the amount of disease. Do hope you can get back on the chemo and keep up the good work. My feet have been troublesome from 7 rounds of carbo/taxol but I am living with it. I finished that back in May and am finding some slight improvement in them now. As my numbers (CA125) have started to move up again I started this week on Caelyx (Doxil in the USA) and am hoping for some good results with that! I am trying to live as normal a life as possible too - slowly coming to accept that this PPC is with me on an ongoing basis however with new discoveries happening all the time just hope to hang on till they can control it better and the magic potion is developed!

    Take care.

    Julie x
  • seatown
    seatown Member Posts: 261 Member
    #6
    JulieL said:

    Good news!
    Hi Seatown

    Yes so good you have found this site and I am sure you will find it as helpful and reassuring as I have (diagnosed Dec 2011). So glad that your initial results from chemo have showed such good reductions in the amount of disease. Do hope you can get back on the chemo and keep up the good work. My feet have been troublesome from 7 rounds of carbo/taxol but I am living with it. I finished that back in May and am finding some slight improvement in them now. As my numbers (CA125) have started to move up again I started this week on Caelyx (Doxil in the USA) and am hoping for some good results with that! I am trying to live as normal a life as possible too - slowly coming to accept that this PPC is with me on an ongoing basis however with new discoveries happening all the time just hope to hang on till they can control it better and the magic potion is developed!

    Take care.

    Julie x

    Thanks!
    Thanks so much, Julie L, for your kind & wise thoughts. Got the good news from my oncologist this wk that my CA 125 is down again, to 803 from 1015 2 wks ago, 1655 a month ago, 2397 6 wks ago & 2738 at its peak upon my diagnosis of PPC in July. He says it’s more important to see the CA 125 values decrease with chemotherapy than to worry about the original value. I’m happy to see the numbers going down, of course. Also happy to have no apparent ill effects from this wk's chemo--at least not yet. I'll cross my fingers with you for the magic potion someday!
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    #7
    seatown said:

    Thanks!
    Thanks so much, Julie L, for your kind & wise thoughts. Got the good news from my oncologist this wk that my CA 125 is down again, to 803 from 1015 2 wks ago, 1655 a month ago, 2397 6 wks ago & 2738 at its peak upon my diagnosis of PPC in July. He says it’s more important to see the CA 125 values decrease with chemotherapy than to worry about the original value. I’m happy to see the numbers going down, of course. Also happy to have no apparent ill effects from this wk's chemo--at least not yet. I'll cross my fingers with you for the magic potion someday!

    Nice to meet you Seatown
    I know having cancer is not the best way to meet people but I am glad you have found this site because it offers such comfort to me.

    I was diagnosed with PPC stage 4 November 2009 and was given 8 - 18 months as an average survival time. Well I am almost hitting the 3 year mark and I am still here :)

    My numbers were around 1,200 and my treatment was the same as yours. I responded quite well and managed to last 7 months or so before I needed more chemo. The reason I was stage 4 was because the cells had gone into the lining of my lungs and I ended up having several chest drains to enable me to breathe. This is what lead to my diagnosis. I had no trouble with fluid in my abdomen as most PPC ladies do. However one of the most positive things for me is that the chemo seems to have completely distroyed all of the cancer cells from around my lungs and they have remained clear now for almost 2 years.

    For the most part I have a really positive attitude as I live with cancer. I know I can't be cured and I have come to terms with that and have learnt to live with my disease. I see it as a chronic condition as, I think, Patsie has already mentioned.

    I have now lost count of how many chemo regimes I have had - which can be seen as a positive thing because my oncologist can always find a treatment for me (they haven't run out of ideas) Whenever I finish a regime I am left alone and just have blood tests every month or so. My numbers are monitored closely and whenever they go up significantly then I am offered a different chemo.

    Please dont get me wrong, some of the regimes are tough. In fact the one I have just finished was PURE EVIL and it has really taken its toll on my body. I have suffered all the possible side effects and some of them (nausea and fatigue) have lasted all the way until the next cycle. BUT it is called Cisplatin and it REALLY WORKS. My numbers were 2,000 before the first cycle and after 2 cycles the numbers came doewn to 292!!!!! So it was worth it.

    So I am now approaching 3 years. The worst my cancer has thrown at me was:
    - fluid around my lungs. This was drained and has now gone away with the chemo.
    - Constipation (I needed hospital treatment). This is now managed with regular stool softeners and I have no problems with it now.
    - I am fatigued and have had to give up my hobby of running.

    BUT I am still alive and I am actually happy. I have found pleasure in things I never would've before cancer. My relationship with my husband is so much better and I value my friends and family more. I am still working (part time) and I love my job - it gives me ME BACK (if you know what I mean)

    Sorry if I have gone on a bit but I wanted you to know that life is not always black when you have cancer. It just takes time to come to terms with your new way of life.

    Take care Tina xxxxxxxx
  • seatown
    seatown Member Posts: 261 Member
    #8
    Tina Brown said:

    Nice to meet you Seatown
    I know having cancer is not the best way to meet people but I am glad you have found this site because it offers such comfort to me.

    I was diagnosed with PPC stage 4 November 2009 and was given 8 - 18 months as an average survival time. Well I am almost hitting the 3 year mark and I am still here :)

    My numbers were around 1,200 and my treatment was the same as yours. I responded quite well and managed to last 7 months or so before I needed more chemo. The reason I was stage 4 was because the cells had gone into the lining of my lungs and I ended up having several chest drains to enable me to breathe. This is what lead to my diagnosis. I had no trouble with fluid in my abdomen as most PPC ladies do. However one of the most positive things for me is that the chemo seems to have completely distroyed all of the cancer cells from around my lungs and they have remained clear now for almost 2 years.

    For the most part I have a really positive attitude as I live with cancer. I know I can't be cured and I have come to terms with that and have learnt to live with my disease. I see it as a chronic condition as, I think, Patsie has already mentioned.

    I have now lost count of how many chemo regimes I have had - which can be seen as a positive thing because my oncologist can always find a treatment for me (they haven't run out of ideas) Whenever I finish a regime I am left alone and just have blood tests every month or so. My numbers are monitored closely and whenever they go up significantly then I am offered a different chemo.

    Please dont get me wrong, some of the regimes are tough. In fact the one I have just finished was PURE EVIL and it has really taken its toll on my body. I have suffered all the possible side effects and some of them (nausea and fatigue) have lasted all the way until the next cycle. BUT it is called Cisplatin and it REALLY WORKS. My numbers were 2,000 before the first cycle and after 2 cycles the numbers came doewn to 292!!!!! So it was worth it.

    So I am now approaching 3 years. The worst my cancer has thrown at me was:
    - fluid around my lungs. This was drained and has now gone away with the chemo.
    - Constipation (I needed hospital treatment). This is now managed with regular stool softeners and I have no problems with it now.
    - I am fatigued and have had to give up my hobby of running.

    BUT I am still alive and I am actually happy. I have found pleasure in things I never would've before cancer. My relationship with my husband is so much better and I value my friends and family more. I am still working (part time) and I love my job - it gives me ME BACK (if you know what I mean)

    Sorry if I have gone on a bit but I wanted you to know that life is not always black when you have cancer. It just takes time to come to terms with your new way of life.

    Take care Tina xxxxxxxx

    Thanks for your story!
    Thank you so much, Tina, for your thoughtful & encouraging reply. I'm interested in checking more of your various posts & will do so soon. I continue to do well -- but it's very early in my journey. I can only hope my good results will continue but I'm aware that treatment may have many twists in the road. I've been writing when I have news at the following site: www.CaringBridge.org/visit/CaroleSeaton

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