primary periteneal carconoma

 

On 4/2/2008 ANNIEBB wrote:

Hello, My mom has PPC, she had surgery on March 7th. They removed a tumor from her colon and one from her intestines. She is still not fully recovered. They have put off her chemo (supposed to start Friday) for another week or so. She said she is a satge 3 or 4 (relating to ovarian cancer). We are all having a really hard time with this, mainly because we don't know what to expect. She has went and made her own funeral arrangements and she's only had cancer for a couple of months. It worries us that she will give up. I am ecstatic that I found this message board. It's a lil more comforting to know more of what to expect. Does anyone have any advice I can share with my mom. She is only 49. My sister and are worried about my dad too. He doesnt talk about it. How do we handle both of them?   

I was diagnosed May 06 stage 3c ppc. I had a 7 month remission after chemo. My ca125 started rising oct. to 160. Second look surgery and ptct did not show cancer but had microscopic cells. Started gemzar/carbo for recurrence in Nov.  ca125 now 32. Hoping for another remission. Stay positive, there are a  lot of chemo drugs out there. Try not to worry and enjoy good days together. 

 

Hi!  I have been on so many different boards for PPC on this site I have a hard time keeping track of them.  So I never knew I had any responses.  Since the initial message I have learned that the "hot spot" in Mom's chest had actually shrunk a bit.  She has been on Tamoxofin since the end of the chemo and they feel that for now that seems to be doing a good job of keeping it in control.  She is VERY happy to hold off on the chemo and is feeling good so I accept that and try not to question whats going on.  She has an excellent medical team that she trusts very much to do the right thing for her.  It's difficult because she is in Arizona and I'm in Texas with a job and 3 children...so I'm not there for appointments etc. so that I can ask my own questions. And Mom just wants to protect me..just like always.  She feels after the last tests that she is looking at a few more years at least.. I hope so but am always waiting for the other shoe to drop. In the meantime I just keep loving her as much as I can and see her as often as possible. On another board there is a survivor of 4+ years....Bravo

To all of you on this stream and any others that are following it, it is remarkable how similar the situations seem to play out.  My mom was diagnosed stage 3 PPC in March 2007.  She had surgery which wasn't able to do much.  She then went through 6 rounds of chemo (Carboplastin/Taxol combo if i recall right).  She responded wonderfully.  Other than losing her hair and mild nausea occassionally, she was great.  She went into remission but in January 2008 they said the cancer was back although she still looked and felt great.  She started a new series of Doxil in February and has had three rounds.  Over the last 2 weeks, she started having gastro discomfort and abdominal distension.  Yesterday her oncologist told her the chemo wasn't working.  It was definitely a huge disappointment for all of us.  He is starting her on a 3rd type of chemo drug in a couple of weeks (Topotecan).  Anyone know anything about it?  It apparently is much stronger so while we are hopeful that will mean it will be more effective, it will also undoubtedly take a bigger toll on her body.  Her spirits have been so strong throughout this but now she is really scared for the first time.  I live far away from her so it's very hard on both of us as i can't be there as much as I'd like.

 

On 4/17/2008 Maxalliemom wrote:

  He is starting her on a 3rd type of chemo drug in a couple of weeks (Topotecan).  Anyone know anything about it? 

Hey there...just found this site...PPC was diagnosed in October 2003. I was given a 20% year to live...so I picked the 20%...so far it's working for me. Been through ALL treatments that are available and am now on an experimental.
I was on Topotecan...that worked for a few months...it was much more milder than the carboplatin or taxol or Cisplatin or Doxil or Gemzar...in fact I felt much better on the Topotecan. When everything is exhausted they will try them all over again...right now I'm on Avastin and Taxol. This has made my numbers fall the best out of everything...but I think until some more time has passed this will not be offered and the docs will try to use the tried and true....
I hope and pray that there is a true remission and she lives a long life...and to those others out there...you are not alone!!!!!  Promise!

 

Thanks for your message.  I'm so glad to hear that your treatments have been successful for you. I will share this news with my mom.  She had the 1st week of Topotecan and fared it okay but was very tired.  On Friday they had to give her 2 pints of blood as her hemoglobin was so low.  That seems to have helped immensely and she is feeling a bit more energetic, albeit not her normal.  She goes to the doctor on Tuesday and hopefully we will find out her CA 125 level has gone down.

Hi to all.  I haven't been on here for quite a while.  Sometimes I just want to kind of let it go for a bit and pretend that this isn't real...even though I think about it everyday.  Mom has informed me that she will be starting chemo again next week, so I guess the remission is officially over.  Also she will be changing from daily  tamoxifin to this topectican (??) that others seem to be on.  I guess the new chemo will not be anything like the original.  No hair loss and much less fatigue and discomfort.  Her number still appears to be low at 40 but she has the hot spots and one is in the chest area so they are concerned about that getting into the lung.  She is still in great spirits and I feel bad because I feel that she is the one trying to keep me positive and convince me that she's not going anywhere for quite awhile.  She says that we can play this chemo game for along time.  Looking forward to seeing her in 2 weeks for a family reunion and then again in July when she is taking me , my siblings and all the spouses and grandkids to SanDiego to live as beach bums for a week.  I'm sure I will feel better when I see her in person..it's been about a year.

 

On 4/17/2008 Maxalliemom wrote:

To all of you on this stream and any others that are following it, it is remarkable how similar the situations seem to play out.  My mom was diagnosed stage 3 PPC in March 2007.  She had surgery which wasn't able to do much.  She then went through 6 rounds of chemo (Carboplastin/Taxol combo if i recall right).  She responded wonderfully.  Other than losing her hair and mild nausea occassionally, she was great.  She went into remission but in January 2008 they said the cancer was back although she still looked and felt great.  She started a new series of Doxil in February and has had three rounds.  Over the last 2 weeks, she started having gastro discomfort and abdominal distension.  Yesterday her oncologist told her the chemo wasn't working.  It was definitely a huge disappointment for all of us.  He is starting her on a 3rd type of chemo drug in a couple of weeks (Topotecan).  Anyone know anything about it?  It apparently is much stronger so while we are hopeful that will mean it will be more effective, it will also undoubtedly take a bigger toll on her body.  Her spirits have been so strong throughout this but now she is really scared for the first time.  I live far away from her so it's very hard on both of us as i can't be there as much as I'd like.

haven't been on here in awhile...How is your mom doing on the topotecan???  Mine is about to change from tamoxofin to that.  She is also starting chemo again next week but not sure exactly what that will be. Still feels great. Hope your mom is responding to this new drug...let me know.

 

She starts her 2nd round of the topotecan today.  It's pretty intense.  She goes in every day for the chemo for 4-5 days and then has 2 weeks off and starts it all over again.  She should have 5-6 rounds if all goes well.  This has been MUCH stronger than the other 2 types of chemo she had previously.  It has given her nausea and really wiped her out.  She had to get 2 pints of blood infused and 2 shots of procrit b/c both her white blood cells and hemoglobin levels were down so much.  She was exhausted and really couldn't do much as a result.  The blood transfusion really helped though and gave her energy back.  They are cutting the dose for this 2nd round so as not to hit her so hard.  We don't yet know if it's effective or not so saying lots of prayers.  The fluid in her stomach is still there but doesn't appear to have increased so hopefully that's a good sign.  I pray that your mother will continue to feel good and respond well to this new chemo.

It's wonderful that you will see her soon and then with your big family trip!   I know it's hard to be away- i live across the country from my mom so can definitely relate!  I am going back in July and August to see her and just booked my air tickets.  Taking my husband and two kids and we all can't wait!  Good luck with the topotecan. 

My mom will finish up the 2nd round of her new chemo drug today.  She is on topotecan now (the 3rd type of chemo for her).  She gets it every day for 5 straight days and then 2 weeks off and then starts again.  Will be for 5-6 rounds.  Today is the last day of her 2nd round.  The first round was tough and she definitely was very fatigued aftewards- required 2 pints of blood and shots of procrit to get her hemoglobin and white blood cells up.  She is feeling much better now and much more energetic.  Great news is that they told her yesterday that he CA 125 is down to 485.  It was at 785 the day she started the first round so this is great news and seems to indicate that this drug is working.