Low Grade anyone?

I have been diagnosed with stage 4 low grade PPC. Have had 6 chemo treatments with Carbo/Taxol. I am wondering if anyone else out there has the same diagnosis.

Comments

  • wanttogetwellsoon
    wanttogetwellsoon Member Posts: 147
    Low grade disease
    Welcome to this board. I too have low grade PPC which is at an advanced stage. I had 6 carboplatin treatments but didn't want to have the Taxol because of the hair loss. My oncologist said that Taxol just gives the added boost and said I might save it for later anyway. So far as I know, only 10% of women who have ovarian or primary peritoneal cancer have the low grade variaty so it's fairly rare. Women who have low grade seem to live slightly longer overall but their disease is likely to be platinum resistant. I did have a good response to treatment though my response was only partial and the disease was reduced rather than put into remission. I have more hope now than I did at the time of diagnosis though it's not because the disease is low grade. It's more to do with the hope I have having messaged with other women who have survived a very long time with both high and low grade ovarian cancer. Being a member of this board has helped to keep me sane. :)
  • JulieL
    JulieL Member Posts: 141

    Low grade disease
    Welcome to this board. I too have low grade PPC which is at an advanced stage. I had 6 carboplatin treatments but didn't want to have the Taxol because of the hair loss. My oncologist said that Taxol just gives the added boost and said I might save it for later anyway. So far as I know, only 10% of women who have ovarian or primary peritoneal cancer have the low grade variaty so it's fairly rare. Women who have low grade seem to live slightly longer overall but their disease is likely to be platinum resistant. I did have a good response to treatment though my response was only partial and the disease was reduced rather than put into remission. I have more hope now than I did at the time of diagnosis though it's not because the disease is low grade. It's more to do with the hope I have having messaged with other women who have survived a very long time with both high and low grade ovarian cancer. Being a member of this board has helped to keep me sane. :)

    Low Grade Disease
    Hi there. I am wondering what is meant by "Low Grade Disease"? Are you able to explain this please? I have not been graded as such but told initially I am Stage 4 PPC as there were cells in the fluid taken from around my lung although there are no nodules on my lungs. Thank you. Although I don't post all the often I do check in on the board several times a week.
  • PatsieD
    PatsieD Member Posts: 99
    JulieL said:

    Low Grade Disease
    Hi there. I am wondering what is meant by "Low Grade Disease"? Are you able to explain this please? I have not been graded as such but told initially I am Stage 4 PPC as there were cells in the fluid taken from around my lung although there are no nodules on my lungs. Thank you. Although I don't post all the often I do check in on the board several times a week.

    Low grade disease
    From what I understand it, low grade disease means that the cancer is slower growing than some other types of cancer cells and they are less invasive. They are also similar to the original cell they mutated from. Mine is defined as surface papaillary which basically means what it says. They haven't invaded the underlying tissue too far and have what is called a papillary architecture. I have a hairbrush which has little spikes with a small bulb at the end. That's how I imagine what the actual structure of the cell looks like. My cancer cells are on the peritoneum throughout the abdomen in what my doctor has described as like having measles there. Being low grade doesn't mean that the cancer cells don't do damage to the abdomen and basically, for me, things are very stuck together. The cancer cells are on the surface of the adhesions too and on the organs of the abdomen. It seems like having something less difficult than high grade but there are problems with this type of cancer too. As I've said, low grade is less invasive of the underlying tissue, but does the damage in its own way. It is also very often not sensitive to platinum based treatments like carboplatin. Often there's a good first response to treatment but then the cancer seems to recognise the drug and is not so affected by it. The longer the time between needing chemotherapy, the better the chance of the platinum being effective as the body seems to forgot previous treatments. At the time of staging, I was told I was at Stage 3c, but what were described at staging as benign lesions on my liver and lungs have since been found to be cancerous so I was actually at Stage 4 in the first place. When I was first diagnosed, I had asites which is fluid in the abdomen. This was malignant. I had a good response to my first and only treatment so far although the cancer didn't go away. it was described as being reduced. It's begun to slowly grow again and I'm likely to be on chemo soon. I'm hoping that I'll respond to the same drug again. Hope this helps Julie. Good thoughts go your way. :)
  • JulieL
    JulieL Member Posts: 141
    PatsieD said:

    Low grade disease
    From what I understand it, low grade disease means that the cancer is slower growing than some other types of cancer cells and they are less invasive. They are also similar to the original cell they mutated from. Mine is defined as surface papaillary which basically means what it says. They haven't invaded the underlying tissue too far and have what is called a papillary architecture. I have a hairbrush which has little spikes with a small bulb at the end. That's how I imagine what the actual structure of the cell looks like. My cancer cells are on the peritoneum throughout the abdomen in what my doctor has described as like having measles there. Being low grade doesn't mean that the cancer cells don't do damage to the abdomen and basically, for me, things are very stuck together. The cancer cells are on the surface of the adhesions too and on the organs of the abdomen. It seems like having something less difficult than high grade but there are problems with this type of cancer too. As I've said, low grade is less invasive of the underlying tissue, but does the damage in its own way. It is also very often not sensitive to platinum based treatments like carboplatin. Often there's a good first response to treatment but then the cancer seems to recognise the drug and is not so affected by it. The longer the time between needing chemotherapy, the better the chance of the platinum being effective as the body seems to forgot previous treatments. At the time of staging, I was told I was at Stage 3c, but what were described at staging as benign lesions on my liver and lungs have since been found to be cancerous so I was actually at Stage 4 in the first place. When I was first diagnosed, I had asites which is fluid in the abdomen. This was malignant. I had a good response to my first and only treatment so far although the cancer didn't go away. it was described as being reduced. It's begun to slowly grow again and I'm likely to be on chemo soon. I'm hoping that I'll respond to the same drug again. Hope this helps Julie. Good thoughts go your way. :)

    Thanks Patsie
    I really appreciate your in depth response. Not sure which version of PPC I have! Was initially diagnosed at Stage 4 (which I gather they never go back on!) as it was thought the cancer had also moved to the lung and breast! Further testing and surgery showed breasts were clear and no visible nodules on the lung so I am keeping my fingers crossed that that situation continues! Sorry to hear you are probably going to need chemo again soon - wish you well with that hope you handle it well! Because of the awful stuff on the internet I try not to look at that too much - head in the sand maybe but it takes away my positivity and I do believe feeling positive is helpful to me. I guess we each find our own way of dealing with the situation!