Primary Peritoneal Carcinoma

On 2/4/2009 Too Young wrote:

Hi Kathy

If Sophie is the one I think she is, she is pregnant and leaving next week I think. I have different nurses all the time but they are all nice and friendly. Did you have your surgery at Calvery and if so who was the surgeon and chemo doctor?

My brother has cancer of the oseophogus (can't spell) and it was too large for surgery plus he is now in his 70's so he has just been having a homeopathic diet and it has become dormant - he was diagnosed about 12months ago so he is doing well. His wife had surgery for a tumor in her bowel and could not have chemo and has been following the same diet and has been fine. So there are remedies out there that work for some people. Have you heard or tried Flor Essance? That is supposed to be good and I have just started to take it.

Hope it is good news with your CA125 marker. I am still waiting for my results from my last blood test.

All the best

Jenny Reeve

 

Dear Jenny

Who did your surgery and who is your oncologist ? I had my surgery at Calvary by Dr John Miller - I am disgusted with the way I was treated at Calvary hence my reason for leaving. After I had my surgery ( radical hysterectomy and debulking ) I had many problems and they wanted me out of there before I was ready. For starters I was a 29 year old who had, only a few months earlier, just given birth to my first child. To all of a sudden have to face the fact that I had a terminal illness, along with the fact I no longer could have children plus menopause hitting straight away - I was mentally a mess. My bowels had not started working again and even still they wanted me out. I was in so much pain mentally and physically and couldn't understand how they could be trying to send me home. I went home (after having a breakdown) and was in so much pain that I ended up back in hospital as I had a bowel obstruction. Not that long after I had recovered from this I came down quite sick. I went back to hospital again where I felt like I was being treated like a hypochondriac, they did tests and found nothing so sent me home. I went to another hospital where I was treated with high doses of antibiotics and within a few days a large blood clot came out of me - I started feeling better straight away. I hate hospitals and like most people I wish to avoid them when I can, so it was an insult to me for doctors to not listen when I said I wasn't well. As far as I am concerned we know our own body better than anyone and we know when something is not right.                                                                                            Over a month ago I came down ill again and I was too scared to go back to this hospital. I spent a week in bed very sick before my husband literally had to drag me in there. Once in there my own oncologist did not come and see me for the first few days, even though I was told by the nurses she was in seeing other people on my ward. I had to ask the nurses to ask her to come see me and she came storming in the door asking me 'what my problem was'. After being treated like this I decided I needed to find another oncologist - one who cared about what I was going through mentally as well as physically. I can't help it that I get very scared every time I come down sick and I don't know if my time will be over soon. I left the hospital and then ended up in Flinders that night and when I gave them my release form, from Calvary, Tabitha hadn't even put on there what I was being treated for .... The doctors at Flinders ran more tests on me that night in emergency than Calvary did over 3 days. I thought the whole point of having Private Health care was so you always had your own doctor to deal with. I found that I had to do my own research on my cancer as I wasn't given the right information by them. At one stage I had small lumps appear along my scar line and for months I was told they were ingrown hairs. It turned out they were fluid filled lumps from my tumour. I know I should of changed hospitals as soon as the first instance happened but I was so lost as to what I should be doing that I just kept going back. I look back now that I understand my condition and feel so angry with myself that I didn't change hospitals sooner. My new oncologist is very understanding and honest and I feel safe in her hands. She gave me all her phone numbers and email address and she answers you every time - unlike Calvary where a lot of time my phone calls never were answered. I am not writing this to turn you off Calvary I was just one of the unlucky ones who had a bad experience there and to tell you the truth Sophie was the main reason I kept going back. In the end I would always ring her for advice and she was fantastic, along with the rest of the wonderful nurses there. I heard along the traps that oncologists get paid commission for each chemo they give to patients from the pharmaceutical companies ( not sure if this is true ) but it would explain why my doctor lost interest in me when I chose to stop chemo as it was no longer working for me. Reading back over this it makes me sound like I was a difficult patient and I can honestly tell you I was not. I was just scared for my life and did everything I was told to do by my doctors. I just want a doctor who actually wants to save my life, not treat me like just another number.

I did try the Flor Essance you wrote about but found no change in the time I was using it. I am seeing a naturopath at Unley called Lyn Crossman and she is absolutely fantastic. She provides me with supplements to help keep your immune system strong and help fight the cancer. She is a very positive person and works with what treatment you are having. My other doctor at Stirling, Dr Sinclair Bode, is still the most amazing person I have met through this whole journey. He mentioned to me about trying Resveratrol as some people have had good responses to this - it is something you have to order off the internet. Lyn and Sinclair are both there for their patients when ever you need them and they always find the time to answer all your questions with the correct answers !

As we all know what works for some people may not work for others so we need to give anything a go. I never thought I would see the day that I used alternate therapies and now I wished I had met Lyn and Sinclair when I was first diagnosed .... everything could be so different now !

Keep fighting this battle

My thoughts are with you

Kind Regards ....... Kathryn Seiffert

Hi Kathryn

I have not any complaints with Calvary to date. My surgeon was also Dr Miller and I found him to be straightforward with the procedure. I think I was lucky that my GP listened to me when I went to see him as within 2 weeks of my visit I was booked in for my operation. The only complaint so far is losing my hair!!

How was your CA125 after your last test? Mine has come down to 23.2 after being as high as 3800 so am pleased with the progress. What sort of supplements are you on and are  you still on chemo? I have got some supplements but do not know if they will interfere with the chemo and whether I should hold off taking them until I finish chemo in 5 weeks.

It certainly sounds like you have had a very bad experience and my heart goes out to you. How you are coping with this disease plus bringing up a small child must be really hard.

Hope you have some positive news after your last test.

Regards Jenny

Wendy,

I have had the symptoms for ppc for serveral months now. I have 2 scans which are clear like yours. Can you tell me how you were finally diagnosed having had clear scans? And why did your surgeon decide to open uyou up?

JeanA

On 12/11/2007 Joansdaughter wrote:

 

On 11/24/2007 nancysdaughter wrote:

I am sorry to hear your mother has this horrible disease.  My adoptive mother died October 30, 2006 of the same disease she fought long and hard but finally gave up.  My thoughts and prayers are with you and your family.

Take care,

Nancy

Hello I noticed your message my first time on this site.  My adotptive mother was diagnosed with PPCancer stage 3 in May 07.  She has undergone 7 cycles of chemotherapy after surgery to reduce the 4cm and 2cm tumour on her liver (unable to be removed).  The reason for my mail is that being adopted you have a unique relationship with your mum and one of the biggest fears of an adopted child is to lose a mother.  I hope I don't lose mine for sometime yet.  How did you cope with any adoptive issues.  Do you have birthparent contact.  I have very close birthparents that found me 5 years ago.  I am interested to hear about your feelings. 

Look forward to your response. 

I am sorry this has taken so long to respond since the passing of my mother my only brother died a year and one month later and it was a shock to say the least.   Yes it is strange to lose these two people and now I only have my father.  I know I can count on my husband, children and relatives but it is hard. 

I hope your mother beats this terrible cancer. Best wishes!

 About finding my birthparents yes this is a tough one I liIve in the State of Missouri and the information is closed.  I would have to hire a lawyer and file a request to find this info out I wish it could be easier but it is not I don't live near the state/office.  I am not sure what to do.  Have you done this?? I hope you are still looking at this site.  It has been a long road of recovery. 
Take care,

Nancy

Hi there

How are you doing, thank you for your inspiring story, my mother was diagnosed with stage 3 ppc a year ago, she had surgery and 6 rounds of chemo, she is now in remission, but terrified of it returning, I tell her your story, I hope all is well with you.

Joanne

My mom was diagnosed with peritoneal cancer. Doctor not sure where it started but it spread to her ovaries and sigmoid colon. Treatment suggested was treat it as ovarian cancer, so there were 6 chemo treatments with taxol and another drug. My mom is 86 years old and she is my hero. She bravely went through major surgery and then finished her last chemo last month and thus far is doing great with minimal side effects from the taxol. Some nerve damage in her finger tips. She ate well during treatment and also recieved a foot massage at least once or twice a week which helped with her circulation.She was also given a colonoscopy and a ct scan after treatment. I hope my mom's story will give hope to those who are just starting treatment, please hang in there.

judelynn

Hi Kathryn

I have not any complaints with Calvary to date. My surgeon was also Dr Miller and I found him to be straightforward with the procedure. I think I was lucky that my GP listened to me when I went to see him as within 2 weeks of my visit I was booked in for my operation. The only complaint so far is losing my hair!!

How was your CA125 after your last test? Mine has come down to 23.2 after being as high as 3800 so am pleased with the progress. What sort of supplements are you on and are  you still on chemo? I have got some supplements but do not know if they will interfere with the chemo and whether I should hold off taking them until I finish chemo in 5 weeks.

It certainly sounds like you have had a very bad experience and my heart goes out to you. How you are coping with this disease plus bringing up a small child must be really hard.

Hope you have some positive news after your last test.

Regards Jenny

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Dear Jenny

where we can chat and post information about different treatments etc .. I have now moved to Flinders Private where my oncologist is Bogda Koczwara - she is an absolute breath of fresh air ! love her to bits :) My cancer marker had stayed down til a few months ago when it jumped up all of a sudden. I found the cancer had spread more in my abdomen and into the lymph node of my groin. After promising not to go back on chemo ever again I relented and have just had my second dose of Gemcitabine and carboplatin. Chemo sucks once again but is not as back as the Taxol / Carboplatin and after one dose my marker has dropped 6 points.

I hope this message finds you well and also hope to hear from you again

Take care

Kathryn S

On 1/6/2009 sweetchesney wrote:

Hey all, Here I am 5 years, 2 months and 17 days out of my diagnoses of PPC. Still SUCKS....but I'm still hanging on. We've run out of all the normal chemos and so as the doc says, Are you ready to become a science experiment?
Oh yeah....let's do it!!! For all those on here who have lost a parent, sibling, friend...I am so sorry for your loss. For those going through this...you are NOT alone!!!! There are a bunch of us out here who are hanging on by the skins of our teeth and are willing to help in any way possible.
I was on Xeloda for the last 6 months but that has also stopped working and I go see the doc next week to see what potions he can come up with. The list of my drugs is extensive and with mutiple same drugs at different times. I am sitting here bald for the 4th time, shedding the weight from the steriods finally, staying up all night with insomnia and so many other things that shouldn't have happened but did...but through it all I am so grateful to be alive and fighting.
So to all....keep up the fight and if you can't, that's ok too...Sometimes its ok to stop the maddness and start your next adventure on the other side!!!
Your friend in the PPC club!!!
Mae
I am on myspace under sweetchesney....if you want to talk.

Rest In Peace Mae ........... you were such an inspiration to me ! Thank you for your emails I will treasure them forever and if I ever need a good kick in the butt when I am down I will read them and think of you. Until we meet again angel xxxxx

Hi Kathryn

I was beginning to get a bit worried about you I had not heard how you were. I had been following Martha Kinnecom's battle which she has just lost and that made me quite upset as she was diagnosed the same time as myself. I had a check up about a month ago and everything was fine then but I am so paranoid. Have you stopped doing the Vitamin B shots? I have started eating apricot kernals and they are quite gross but I am hoping that they will help.Whereabouts in Adelaide do you live?

Will do a search on facebooks and see if I can find the site. All the best

Jenny

On 8/28/2009 tasgirl wrote:

Hi Kathryn

I was beginning to get a bit worried about you I had not heard how you were. I had been following Martha Kinnecom's battle which she has just lost and that made me quite upset as she was diagnosed the same time as myself. I had a check up about a month ago and everything was fine then but I am so paranoid. Have you stopped doing the Vitamin B shots? I have started eating apricot kernals and they are quite gross but I am hoping that they will help.Whereabouts in Adelaide do you live?

Will do a search on facebooks and see if I can find the site. All the best

Jenny

Dear Jenny

I am saddened to hear another lovely person has lost their battle with this cruel disease. I have lost 5 dear friends in the last year to Peritoneal Cancer and it has scared me how they have gone so quickly.

I stopped having the Vitamin B17 ( laetrile therapy ) last year as my markers had improved so much we did not feel the need to keep going. Though since in the last 3 months when my markers increased again we did begin to use this treatment again. Please be careful eating apricot kernels as I have heard that someone has died from doing so. The B17 I get imported over from Mexico and I have 3 vials each treatment - this way we know exactly how much B17 I am having put into my system. Dr Sinclair Bode at Stirling is the best person to talk to about this as he has dealt with it for quite some time.

I live in Netley - near Marion Road and just back in from Anzac Highway. Which area do you live in ??

On Facebook I am under the name Kathryn ... had to keep my maiden name in so my old friends could find me :) If you can track me down on there and send me a friend request I can introduce you to the girls on there that are also fighting this cancer. They are from all over the world and a great sorce of information.

Hope to see you on there soon ... until then keep smiling :)

Kathy

Hi Kathryn

I am only having 5 apricot kernals a day as mentioned in Ian Gawlers book so I think that should be okay. As I did not have any tumors at the time of surgery I am using this as a preventative method.  I live in College Park near St Peters. I will look you up on facebooks but I am under Barry Goldstein as my husband already had a facebook page but maybe I should have one of my own for anything to do with PPC.

Hope you are well Jenny