re: mum with stage 4 ppc metastasised to lungs

sara9
sara9 Member Posts: 7
in Peritoneal Cancer #1

Hello everybody,

My mum, who is 58, was diagnosed with Primary peritoneal carcinoma stage 4 in August 2012. Initially, we took her to the hospital because she couldn't breath properly. Turns out she had pleural effusion in her right lung. After draining litres of fluid and suspecting it might my TB, eventually they found out it was cancer. With further tests they found out specifically it was PPC stage 4 metastasised to her lung. The initial plan was to give her 3 chemos (carbo/taxol) and if the cancer has shrunk then a surgery and then 3 more chemos to kill of any leftovers. After her 3 chemos the cancer in her ovary did shrink ALOT and the fluid never came back but NO change in her lungs according to the CT scan. She also lost most of her 3ft long beautiful hair. The doctors did say early on that her cancer cells found in her lungs are very thin and so can't do a surgery there. So only chemo could kill it off. So they gave her 3 more chemos but this time they added avastin with it. Did another CT scan last week and there is no change in the lungs whatsoever. The ovary is doing fine. Her overall CA-125 is 14 at the moment (it started off with about 250).

So the doctors said they will not perform a surgery on her (EVER) which we are saddened by because this means there's no chance of "curing" the cancer. They plan to give her 3 more avastin by itself. Mum is also scared they will stop giving her any more chemo after this and just give up but I don't think they will stop. (We have to ask them this the next time we see them in the clinic).

In the meantime any extra informartion will be great. I mean has anybody had a situation where the cancer cells in the lungs won't go down with chemo like my mum, has anybody survived years without surgery? Any info will be much appreciated.

(I am also posting this on the Ovarian cancer forum as the doctors say it's pretty much identical to ovarian cancer and is treated in the same way).

Kind regards,

Saranya

xxx

Comments

  • dorothymarion
    dorothymarion Member Posts: 28
    #2
    Stay positive Saranya

    You mention in your post that Mum's CA-125 has dropped from 250 to 14 (which is in the acceptable range).  This would indicate that the chemo is working, so stay positive.  I'm not sure where you're located but I have a feeling it might be either the UK or Australia (your reference to "Mum" gave it away... :)!)  If you and Mum want to continue on with further chemo treatments do you have that option?  I'm originally from the UK but live in the States now, so not quite sure how the NHS operates in this type of situation.  Here, and provided you have adequate insurance coverage, patients do have a lot of treatment choices available to them. 

    Good luck to Mum, and keep us informed as to how she's doing. 

    Dorothy

  • JulieL
    JulieL Member Posts: 141
    #3
    Similar diagnosis

    I am very sorry to hear about your Mum and wish her well with her treatment.   My diagnosis was very similarly found in a pleural effusion 14 months ago.   I am still on chemo (gemcetabine) which is helping me reduce my CA125.  I have had 2 surgeries and chemo most of the last 14 months and am feeling generally well (just get a bit tired with the chemo and some neuropathy in my feet.)    When you say they wont operate 'ever' do you think they are referring to the lungs?  PPC is very difficult to remove surgically if it is thinly spread and this is where the chemo often helps.  Perhaps you can ask if they would operate to remove the ovary and surrounding areas.   Yes it is sad to lose your beautiful hair but believe me it will grow again!  Mine is coming back very thick and curly!! My daughter is a great strength to me as I am sure you are for your Mum.

    My love and best wishes in finding the right treatment.

    Julie 

  • PatsieD
    PatsieD Member Posts: 99
    #4
    the lungs

    Hi there... I was saddened to hear about your Mum. I'm in the same situation with PPC and mets to the lung. I had a partial response to chemo but the growths on my lungs didn't go down at all. I've been told that there is no operation for me too. However, the lungs mets don't seem to be doing anything at the moment which means that whilst they didn't go away, they did become much slower in their growth. PPC is treated as a chronic disease at the moment but there is hope on the horizon with personalized medication on the way. That's the way I see it ... x

  • sara9
    sara9 Member Posts: 7
    #5
    dorothymarion said:

    Stay positive Saranya

    You mention in your post that Mum's CA-125 has dropped from 250 to 14 (which is in the acceptable range).  This would indicate that the chemo is working, so stay positive.  I'm not sure where you're located but I have a feeling it might be either the UK or Australia (your reference to "Mum" gave it away... :)!)  If you and Mum want to continue on with further chemo treatments do you have that option?  I'm originally from the UK but live in the States now, so not quite sure how the NHS operates in this type of situation.  Here, and provided you have adequate insurance coverage, patients do have a lot of treatment choices available to them. 

    Good luck to Mum, and keep us informed as to how she's doing. 

    Dorothy

    Thanks Dorothy

    Thank you for the lovely reply. Yes the overall CA-125 has dropped but NO change in the lung which is worrying. Yes you are correct, we are from the UK :)                               I have no idea whether we can continue if we want to, that's something I should find out. Oh! So did you get your treatment in the US or UK if you don't mind me asking?          I ask because mum, at the moment, feels that treatment in the US is better and she even thought about travelling there to get treated (privately, although I highly doubt we can afford that kind of money!). She's had her second Avastin yesterday and she has one more to go, so we'll see the result in a acouple of weeks. 

    I can't see what you were diagnosed with but whatever it was, I hope you are doing well!!

     

    Saranya 

     

  • sara9
    sara9 Member Posts: 7
    #6
    JulieL said:

    Similar diagnosis

    I am very sorry to hear about your Mum and wish her well with her treatment.   My diagnosis was very similarly found in a pleural effusion 14 months ago.   I am still on chemo (gemcetabine) which is helping me reduce my CA125.  I have had 2 surgeries and chemo most of the last 14 months and am feeling generally well (just get a bit tired with the chemo and some neuropathy in my feet.)    When you say they wont operate 'ever' do you think they are referring to the lungs?  PPC is very difficult to remove surgically if it is thinly spread and this is where the chemo often helps.  Perhaps you can ask if they would operate to remove the ovary and surrounding areas.   Yes it is sad to lose your beautiful hair but believe me it will grow again!  Mine is coming back very thick and curly!! My daughter is a great strength to me as I am sure you are for your Mum.

    My love and best wishes in finding the right treatment.

    Julie 

    Julie

    Thankyou! 

    Oh, I never heard of gemcetabine. Are you from the US if you don't mind me asking? Maybe they don't use that in the UK or maybe they may use it in the future. Yhh my mum has very similar side effects after chemo too. I think they meant there is no point in operating anywhere (even the ovary areas) if the cancer in the lung won't go down. I think I will clariy again just incase. Yh although it was tough, I think my mum is okay with the hair issue now. I am glad your hair is growing back beautifully :)

    You seem to have gone through a lot! I hope you are doing well and hope you recover completely soon. I am happy your family is there for support. 

    Thanks again

    Saranya

  • sara9
    sara9 Member Posts: 7
    #7
    PatsieD said:

    the lungs

    Hi there... I was saddened to hear about your Mum. I'm in the same situation with PPC and mets to the lung. I had a partial response to chemo but the growths on my lungs didn't go down at all. I've been told that there is no operation for me too. However, the lungs mets don't seem to be doing anything at the moment which means that whilst they didn't go away, they did become much slower in their growth. PPC is treated as a chronic disease at the moment but there is hope on the horizon with personalized medication on the way. That's the way I see it ... x

    PatsieD

    Hello! Thanks for the reply. Ahh you are in the exact same position as my mum from what I understand :( Yhh although her CA-125 is going down, there's no change in the lungs whatsoever. But like you said the growth has slowed down. Yhh I am not happy with the 'no operation' part. Yes, you are right. I hope cancer can be 'cured' one day. 

    I really hope you recover soon! Stay positive :) 

    Saranya x

  • JulieL
    JulieL Member Posts: 141
    #8
    sara9 said:

    Julie

    Thankyou! 

    Oh, I never heard of gemcetabine. Are you from the US if you don't mind me asking? Maybe they don't use that in the UK or maybe they may use it in the future. Yhh my mum has very similar side effects after chemo too. I think they meant there is no point in operating anywhere (even the ovary areas) if the cancer in the lung won't go down. I think I will clariy again just incase. Yh although it was tough, I think my mum is okay with the hair issue now. I am glad your hair is growing back beautifully :)

    You seem to have gone through a lot! I hope you are doing well and hope you recover completely soon. I am happy your family is there for support. 

    Thanks again

    Saranya

    Hi Saranya

    I am in Australia and certainly some of the drugs we use here have different names i.e. Doxil in the US is Caelyx here.  Gemcetabine is also known as Gemzar.  I think it has been around for a while and my oncology nurse told me it is generally gentler on the body!   

     

    Yes, ask all the questions.   It can be quite daunting and often Drs seem to want to rush you out the door to see other patients but if you have a list of questions I suggest you let the Dr know you need some answers so he/she will allow you the time you need.   I know I have become more forceful and much less my normal gentle self in these situations!

     

    Julie  

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