Peritenel Cancer

I may not have spelled it right.  My Mom just got diagnosed on 3-12-07 for peritenel cancer.  She had an illiosotomy and her spleen removed.  They plan to start chemo in 4-5 weeks.  Can anyone help me with information concerning anything about it and what my brothers and I can expect and what we need to do. 

Keithp

Dear Keith,

I am so sorry to hear about your mom.  My mom was diagnosed with stage three primary peritoneal cancer four years ago.  She had surgery, followed by chemotherapy, which until the last few months she tolerated very well.  Her CA-125, the blood test that gives you some idea of the cancer's activity, dropped below 20 one time during the last four years and she had one great summer off chemo and got to travel a little bit.

Your mom's doctor should be able to tell you what stage her cancer was, but no one can predict how she will respond to the different chemos available and one woman on this site is living six years post diagnosis and a friend of mine's mother was also stage three and its been eleven years for her.

However, my best advice is spend as much time with her as you can.  Be supportive and honest.  Let her talk to you about her fears and don't be afraid to talk to her about yours.  And then remember she is alive now.  We still play cards and board games.  We go out for lunch when she feels up to it. 

Get her the best care you can, preferably a gynocological oncologist if you can find one near you. This cancer is treate like ovarian cancer and treatment is pretty standard.  Google " primary peritoneal cancer" and read the other messages on it at this site.

My heart goes out to you, your brothers, and your mom.  I hope she has a great outcome and many more years with you all.

paulabeth

Well It is confirmed to have Stage 4 PPC.  She was only to be in the hospital for about 2 weeks and that all has changed.  She had kidney failure and they were able to get them working again but not a full function, she developed pneumonia and they are treating it and she has regained most use but still have a little in her lower lobes.  She cannot keep anything down and she has been having major throw-ups and they had to install a feeding tube in her throat.  Luckily my Aunt has come down to help and I am going there this wekend to help get my father some relief.  My brother and I have been rotating weekends but we both live over 4 hours away.  The websites I visit scare the shit out of me!!!  I have finally come to the realization that it is pretty well incurable.  Your response helped me understand the the left left should not to be worry but improved quality with her and the time she can spend with her grandchildren.  My Dad does not understnad the real situation that is ahead of us and we are currently not letting him know the realistic situation because he is always with her and she realies on his strength.  Please keep in touch.

KeithG

Dear Keith,

I am so sorry to learn that your mother is suffering from such serious complications.  My mom has had recurrent bloodclots and finally had a filter put in.  She tolerates the chemo pretty well--no vomiting, but some controlable nausea and tiredness.  What are they giving your mom for the nausea? What chemo drugs are they treating her with?  My mom is treated at Northwestern University--if their treatments are similar, I can tell you what drug protocols they used to control the side effects.

I know it is hard to not live close.  I live in Anchorage, Alaska, and my mom lives outside of Chicago. It's a six hour red eye flight and for the past year I've been traveling with my infant daughter.  I just got back home last night after a two week visit with my mom.  It was a hard parting.  She too wants to see her grandkids grow up.  And it is hard to take my daughter away from my husband.  We are first time parents and both in our early fifties! But she brings such joy to my mom and gives her an incentive.  It has been a long, hard four year battle for her and I don't know how much more she can take.  If the new drugs she is on don't work, the doctor gives her three to four months.  I cannot just sit in Anchorage for those months, because when she is gone she is gone.  Fortunately my husband is very supportive and will commute if we are at the end.

Your dad probably knows more than you realize. Your mom, too. You might start telling her now, a little at a time, what she means to you, what a good mom she is, how much you love her, "remember when" stuff.  My mom reminisced a lot after her surgery. If you can, ask her how she feels about what has happened to her and what she is going through.  She needs to know she can talk to you about it.  Women need to talk.  Bring your kids to see her if you can. 

It is so hard, I know.  I did reply to your question about the CA-125, but it isn't showing up so let me know if you got it or not.

Paulabeth

On 4/6/2007 Paulabeth wrote:

Dear Keith,

I am so sorry to learn that your mother is suffering from such serious complications.  My mom has had recurrent bloodclots and finally had a filter put in.  She tolerates the chemo pretty well--no vomiting, but some controlable nausea and tiredness.  What are they giving your mom for the nausea? What chemo drugs are they treating her with?  My mom is treated at Northwestern University--if their treatments are similar, I can tell you what drug protocols they used to control the side effects.

I know it is hard to not live close.  I live in Anchorage, Alaska, and my mom lives outside of Chicago. It's a six hour red eye flight and for the past year I've been traveling with my infant daughter.  I just got back home last night after a two week visit with my mom.  It was a hard parting.  She too wants to see her grandkids grow up.  And it is hard to take my daughter away from my husband.  We are first time parents and both in our early fifties! But she brings such joy to my mom and gives her an incentive.  It has been a long, hard four year battle for her and I don't know how much more she can take.  If the new drugs she is on don't work, the doctor gives her three to four months.  I cannot just sit in Anchorage for those months, because when she is gone she is gone.  Fortunately my husband is very supportive and will commute if we are at the end.

Your dad probably knows more than you realize. Your mom, too. You might start telling her now, a little at a time, what she means to you, what a good mom she is, how much you love her, "remember when" stuff.  My mom reminisced a lot after her surgery. If you can, ask her how she feels about what has happened to her and what she is going through.  She needs to know she can talk to you about it.  Women need to talk.  Bring your kids to see her if you can. 

It is so hard, I know.  I did reply to your question about the CA-125, but it isn't showing up so let me know if you got it or not.

 

Paulabeth

What kind of cancer does she have?  PPC??  And what organs are involved?

On 4/6/2007 Witchdoctor wrote:

What kind of cancer does she have?  PPC??  And what organs are involved?

She has PPC, stage three at the time of diagnosis.  She had surgery four years ago, and has had various chemotherapy treatments that have kept the cancer activity controlled.  On March 20, her CA-125 level doubled--3950.  She has small tumors on her intestine, a tumor pressing on her bowel, one small spot on her liver, and some tumors where the lining used to be.  She is taking oral chemotherapy--cytaxin, I think--and is supposed to start salidimide (spelling?), but it hasn't arrived yet.  She is extremely tired, tireder then she has ever been since her diagnosis.

Paulabeth

Has anyone suggested surgical removal of visible tumor followed by Whole Abdominal Radiation plus/minus more chemo.  On Stage III failures there is a salvage rate..

On 4/7/2007 Witchdoctor wrote:

Has anyone suggested surgical removal of visible tumor followed by Whole Abdominal Radiation plus/minus more chemo.  On Stage III failures there is a salvage rate..

No, in fact, her doctor has said she would not perform surgery on my mother again; she's 83, and I thought she determined that because of her age.  I'm not sure my mother would opt for surgery again, either, as the first surgery was very hard on her.  On the other hand, she really wants to live and to feel good again.  Thank you very much for the information.  I will bring it up with my family and the doctor. Again, thank you.

Paulabeth