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80 year old Mom with PPC

Daughterleslie
Posts: 6
Joined: Sep 2012

My 80-year-old Mom was diagnosed with primary peritoneal cancer last October. After treatments with Carboplatin and Taxiteer she had a successful partial hysterectomy laparoscopically. Her fallopian tubes and ovaries were removed but her uterus was partially fused to her bladder. More treatments after that and CA-125 was down to 6 and all evidence showed cells were dead. Three months later CA-125 us up to 142 and there are signs of disease in her CT scan. She is very weak, also has Parkinson's and struggles with memory, dizzieness, and low blood pressure.

Now we are faced with the decision to begin Doxil. We are at a loss. She depends on me so much to make decisions and I don't know where to start. My 43-year-old brother with Down Syndrome moved in with me suddenly last October when she went to the hospital, I have 2 children, one just started college, I have a homeless 18-year old living with me (my son's friend) and a full time job as a Managing Director. I lie awake at night solving these things but I can't find much on PPC and especially treatment for elderly and weak persons. She had 2 trips to the ER during treatment--for severe dehydration and a UTI and the a fall where she broke 6 ribs--a 2-month ordeal with a long hospital stay and rehab. We are told the return growth might be slow and that the treatments might be very hard on her. What to do? She just barely recovers strength and then goes for more treatment. She is consdiering the treatment thought because her memory of issues she has had in the past are not vivid (my memory is much stronger of course). The decision is hers but I am so worried that the treatment might be worse than the disease. I wonder how long it will take to spread? I am told the top of the omentum is thickening and there is like a pea sized tumor in her abdomen. This is the first sight I have seen with a separate area for PPC! That is very encouraging. If there is anyone out there with some wisdom or thoughts to share I would be so grateful.

Leslie

seatown's picture
seatown
Posts: 220
Joined: Sep 2012

So sorry to hear about your mom and all the problems you face as a member of the "sandwich" generation, caring for a parent as well as offspring. Having had a demanding managerial job in the past as well, I can relate somewhat to all your stresses. I have no wisdom to share; only want to offer the thought that someone out there can relate. I was diagnosed with PPC in July 2012 and am responding well to treatment -- but what a shock to face the diagnosis & all the treatment issues that arise. I too have lamented the relative dearth of info available on PPC. Best of luck to you & your mom.

Daughterleslie
Posts: 6
Joined: Sep 2012

I wish you all of the best. Even if I can't find the answer, (Doxil treatment or no) it is very encouraging to see PPC on the map.
Leslie

JulieL's picture
JulieL
Posts: 141
Joined: Jan 2012

I was diagnosed with PPC December 2011 as a 63 y.o. and have had 7 rounds of carbo/taxol, lung surgery (Pleurodosis) and debulking surgery with removal of Omentum and ovaries (large bowel removal and hysterectomy happened many years previously). Just had 2 months remission and CA125 numbers rising again so started Caelyx this week (I am in Australia where Doxil is called Caelyx). Have found the first treatment quite easy - very little nausea and so far no other difficulties. But of course don't know yet if it will do the job for me - will be waiting anxiously for the next blood tests! However you have so many other difficulties with the age of your mother and other family situations - my heart goes out to you.

Yes this is a great site and so good to be able to discuss with other sufferers. It is such a rare beast!

Julie

Daughterleslie
Posts: 6
Joined: Sep 2012

My heart goes out to you! Thank you so much for sharing your experience with Doxil. I mentioned Mom's memory issues....this latest bit of news seems to have been sobering. She really does not remember vividly the side effects and trips to the hospital for broken ribs, UTI, etc. We are leaning toward treatment. She is really a tough bird. I will be there for her regardless of the choice. I will be trying to follow this site closely.

Ann-PPC
Posts: 3
Joined: Feb 2010

I'm so sorry to hear about your mother being diagnosed with this cancer. My mother was first diagnosed back in 2000 and I remember how scary and hopeless it seemed. There was very little information about PPC back then. What I have learned since then is it is very similar to ovarian cancer and the information that you read about ovarian cancer can be helpful.

To share a little about my mother, she went through a rough time with chemo but it was very effective and she was in remission until 2006. In 2006 she developed an inoperable tumor and had to undergo multiple rounds of chemo until the tumor was gone. Again, the chemo was tough but effective. While going through the chemo there were times when she didn't think she could survive the treatments. But once in remission, the bad memories faded somewhat and she was cancer free and feeling great. I think it may be a blessing for your mother not to remember the ordeal too clearly.

I just found out yesterday that my mother's cancer is back. Fortunately it is quite small at the moment and she is feeling good. My stepfather died a year ago, so I know that my mother will need more support from me through this cancer episode. I know it must feel really overwhelming for you with everything you have going on in your life. It is tough when your mother is relying on you. My mother is 75 years old and I know she is questioning whether she can beat this cancer again. I don't think that we can do anything unless we believe that we can. So, I choose to believe that my mother can beat this cancer again. They are developing new treatment options all the time, so in my opinion, it is worth fighting. Of course, everyone has to decide for themselves how to deal with this diagnosis. I will keep you and your mother in my thoughts and prayers.

Ann

seatown's picture
seatown
Posts: 220
Joined: Sep 2012

So sorry to read that your mom's cancer has returned. Wishing strength to you & all her family.

JulieL's picture
JulieL
Posts: 141
Joined: Jan 2012

Hi Ann
Thank you for sharing your family story of PPC. Your mother has been a great fighter and sounds to have had good quality of life in between the difficult chemo treatments and precious time for you all. So sad to hear the cancer is back and so another fight. Yes, I too believe it is important to have that belief in beating the cancer.
However I must say hearing that your mother has survived for 12 years since diagnosis is encouraging to me! Personally, I havent heard of such a long survival time! I am just coming up to one year myself and on my second lot of chemo with only a 2 month remission in between. You and your mother are in my thoughts and prayers.
Julie

abrub's picture
abrub
Posts: 1531
Joined: Mar 2010

My mother had advancing Alzheimers, and when it looked like her breast cancer might have come back, we decided not to pursue it. She's had a good long life, and at this point,with her greatly reduced quality of life, prolonging it for the sake of prolonging by putting her through challenging treatments seems cruel and pointless.

Cancer treatments are arduous, as we all know. I know that I personally wouldn't want to undergo treatment again unless the intended outcome was increased life with good quality.

This is a decision you have to make according to your personal belief system and knowledge of your family and mother. Personally, if she is not suffering, then I would opt to avoid treatment, with the goal of keeping her as comfortable and happy as possibly.

Just my two cents.
Alice

PatsieD
Posts: 100
Joined: Jun 2012

I can see that you're all having a very hard time in lots of way. It's also very difficult to make other people's decisions for others even when you have to, isn't it. My rate of growth is slow at the moment and although there's been no real movement from an initial partial response to treatment, the carboplatin seems to have switched some cells off and made others lazy. My doctors have recommended no treatment for now until they see further signs such as ascites and more pain than I have already. It's hard for you especially as you're looking after someone so close to you. When I was caring for my mother, my heart was in my mouth for a lot of the time so I know how you feel and although I can't offer specific advice or anything, please know that there are people here who understand your conflicting emotions and are listening to you.

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