Primary Peritoneal Carcinoma

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RE: Primary Peritoneal Carcinoma

by Kelrunran on Thu Jan 01, 2009 12:00 AM

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Hello,

 I thought I would let you know that Leah passed away in November.  I don't know what happended because she was unable to post to her blog.  I found out by going to her My Space page and read the news.

She was an inspiration!  Kelly 

RE: Primary Peritoneal Carcinoma

by tasgirl on Tue Jan 06, 2009 12:00 AM

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Hi

I am also in Adelaide and was been diagnosed with Primary Peritoneal Cancer. I was diagnosed in early October and had a full abdominal hysterectomy on the 20th Oct and started chemo 3 weeks later and things are going okay. My CA125 marker was just under 4000 before going into hospital and is now 32.5 so I am finally in the range. What happens after chemo is anyones guess as this type of cancer seems to come back very quickly.

I thought this type of cancer was 'RARE' but it seems to me to be very common but not much is known about it. Does anyone know of a good alternative therapy for after chemo?

Regards Jenny

RE: Primary Peritoneal Carcinoma

by sweetchesney on Tue Jan 06, 2009 12:00 AM

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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.

RE: Primary Peritoneal Carcinoma

by Bebe1120 on Thu Jan 15, 2009 12:00 AM

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Hi my sister was told she had this cancer July of 2007. We Praise the Lord we are still together.  I took her to the CTCA in Zion Ill. They treat you in mind, body and soul. She has not had surgerey she has had 14 chemo treatments in a row (never got sick once) for the past three months we have been on watchfull hope. She is a teacher in a Head Start class and with much love and thanks to the CTCA Center I can say she is back on the floor playing with her class of 19, 4 and 5 yaer olds. We were told she had three months at the most to live how ever I know that God is the only one with the ability to say that.  When we came to Zion (CTCA) we told the Doctor what we were told. She assurred us my sister did not have a expire date stamped on her foot. That with carefull treatment she could spend many good years with us. She is 62 and in great shape after all she is playing with a classroom full of children.  This illness came on us very quickly we were on vacation in Branson one week and two weeks later the Doctor back home removed 11/2 gal. of fluid from her lungs. Told us she had ovairion cancer (she did not). I saw the ad for the Cancer Treatment Centers of America and I knew I had to get her to one.  We live two hours from the Tulsa one but our insurance would not work there (of course). By the grace of God it did work in Zion. If you have not tried CTCA then I pray you do. She is treated with love, kindness and respect. The care she receives here is so wonderfull. I have met so many people who came here with no hope only to find hope and life. I send God's Blessings to each of you dealing with this cancer

RE: Primary Peritoneal Carcinoma

by Too_Young on Sun Feb 01, 2009 12:00 AM

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On 1/6/2009 tasgirl wrote:

Hi

I am also in Adelaide and was been diagnosed with Primary Peritoneal Cancer. I was diagnosed in early October and had a full abdominal hysterectomy on the 20th Oct and started chemo 3 weeks later and things are going okay. My CA125 marker was just under 4000 before going into hospital and is now 32.5 so I am finally in the range. What happens after chemo is anyones guess as this type of cancer seems to come back very quickly.

I thought this type of cancer was 'RARE' but it seems to me to be very common but not much is known about it. Does anyone know of a good alternative therapy for after chemo?

Regards Jenny


Hi Jenny

I am a PPC sufferer right along side of you and I also live in Adelaide. The best advice I can offer you is to get in touch with a Dr Sinclair Bode in Stirling. I have been having alternate treatment with him for a year now and it is the only treatment that has made me feel better and has also made my CA125 drop back to the normal range. The treatment I am having is on a weekly basis and is high doses of Vitamin C intravenously, I was also having VitB17 ( which I had to import over from mexico).  Unfortunately chemo wasn't working for me. If you don't mind me asking ... what hospital are you being treated at ? I was at Calvary and have now changed to Flinders Private as I felt I needed a fresh pair of eyes looking over my situation.

For a rare cancer there seem to be a lot of people now getting diagnosed with this cancer.

Kathryn Seiffert

RE: Primary Peritoneal Carcinoma

by tasgirl on Sun Feb 01, 2009 12:00 AM

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Hi Kathryn

I am going to Calvary and have found it to be really good. My CA125 marker had come down within the range (but have been away so do not know what it is at the moment). I have 6 weeks of chemo left so at the moment am being positive that chemo has worked. I do have an appointment next week with a doctor in Norwood about the Vit C treatment. What treatment are  you having at Flinders? How long have you had PPC?

It does not seem to be such a RARE form of cancer as there is a lot of people who do have it.

I have just bought a book in the States about an alternative cancer treatment which is diet and herb based but do not know how effective it would be, haven't finished reading it yet.

Regards Jenny

On 2/1/2009 Too Young wrote:

 

On 1/6/2009 tasgirl wrote:

Hi

I am also in Adelaide and was been diagnosed with Primary Peritoneal Cancer. I was diagnosed in early October and had a full abdominal hysterectomy on the 20th Oct and started chemo 3 weeks later and things are going okay. My CA125 marker was just under 4000 before going into hospital and is now 32.5 so I am finally in the range. What happens after chemo is anyones guess as this type of cancer seems to come back very quickly.

I thought this type of cancer was 'RARE' but it seems to me to be very common but not much is known about it. Does anyone know of a good alternative therapy for after chemo?

Regards Jenny


Hi Jenny

I am a PPC sufferer right along side of you and I also live in Adelaide. The best advice I can offer you is to get in touch with a Dr Sinclair Bode in Stirling. I have been having alternate treatment with him for a year now and it is the only treatment that has made me feel better and has also made my CA125 drop back to the normal range. The treatment I am having is on a weekly basis and is high doses of Vitamin C intravenously, I was also having VitB17 ( which I had to import over from mexico).  Unfortunately chemo wasn't working for me. If you don't mind me asking ... what hospital are you being treated at ? I was at Calvary and have now changed to Flinders Private as I felt I needed a fresh pair of eyes looking over my situation.

For a rare cancer there seem to be a lot of people now getting diagnosed with this cancer.

Kathryn Seiffert


 

RE: Primary Peritoneal Carcinoma

by Too_Young on Tue Feb 03, 2009 12:00 AM

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Hi Kathryn

I am going to Calvary and have found it to be really good. My CA125 marker had come down within the range (but have been away so do not know what it is at the moment). I have 6 weeks of chemo left so at the moment am being positive that chemo has worked. I do have an appointment next week with a doctor in Norwood about the Vit C treatment. What treatment are  you having at Flinders? How long have you had PPC?

It does not seem to be such a RARE form of cancer as there is a lot of people who do have it.

I have just bought a book in the States about an alternative cancer treatment which is diet and herb based but do not know how effective it would be, haven't finished reading it yet.

Regards Jenny

Dear Jenny

I have had PPC for 2 years now. I am only having the Vitamin C treatment at the moment as chemo did not work for me and there are not any other options to try yet. I have just had another CA125 test done and I am waiting for the results ... fingers crossed they are good. Basically I am just sitting in limbo at the moment, not knowing what else to do. I have tried so many different types of diets and have just ended up back at square one ... anything is worth a shot though as everyone responds differently to different alternatives. I have been told to try resveratrol ( i think i may of spelt it wrong ), so I will give this a go next.

If you see Sophie at chemo tell her I said a big hello ! she is an absolute angel and helped me through chemo so many times with her infectious smile.

Kind regards

Kathy Seiffert

RE: Primary Peritoneal Carcinoma

by tasgirl on Wed Feb 04, 2009 12:00 AM

Quote | Reply

 

On 2/3/2009 Too Young wrote:

Hi Kathryn

I am going to Calvary and have found it to be really good. My CA125 marker had come down within the range (but have been away so do not know what it is at the moment). I have 6 weeks of chemo left so at the moment am being positive that chemo has worked. I do have an appointment next week with a doctor in Norwood about the Vit C treatment. What treatment are  you having at Flinders? How long have you had PPC?

It does not seem to be such a RARE form of cancer as there is a lot of people who do have it.

I have just bought a book in the States about an alternative cancer treatment which is diet and herb based but do not know how effective it would be, haven't finished reading it yet.

Regards Jenny

Dear Jenny

I have had PPC for 2 years now. I am only having the Vitamin C treatment at the moment as chemo did not work for me and there are not any other options to try yet. I have just had another CA125 test done and I am waiting for the results ... fingers crossed they are good. Basically I am just sitting in limbo at the moment, not knowing what else to do. I have tried so many different types of diets and have just ended up back at square one ... anything is worth a shot though as everyone responds differently to different alternatives. I have been told to try resveratrol ( i think i may of spelt it wrong ), so I will give this a go next.

If you see Sophie at chemo tell her I said a big hello ! she is an absolute angel and helped me through chemo so many times with her infectious smile.

Kind regards

Kathy Seiffert


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

RE: Primary Peritoneal Carcinoma

by Too_Young on Wed Feb 04, 2009 12:00 AM

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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

RE: Primary Peritoneal Carcinoma

by Too_Young on Wed Feb 04, 2009 12:00 AM

Quote | Reply

 

On 1/1/2009 Kelrunran wrote:

Hello,

 I thought I would let you know that Leah passed away in November.  I don't know what happended because she was unable to post to her blog.  I found out by going to her My Space page and read the news.

She was an inspiration!  Kelly 


Dear Kelly

I cried a river of tears when I first learnt of Leahs passing. She was such an amazing person who was always there when you needed her. She will be missed so much ! I hadn't managed to finish reading her blog and found the page is now inactive. Thankfully there is another woman Mae who has a website and she is great to chat to, she also has the rest of Leahs blog on her website. She is on Myspace under sweetchesney.

It has scared me so much to read that Leah 'seemed' to be doing ok and then within a month she was gone. I have set up a cause on my Facebook site and I am hoping to find more PPC survivors and carers. The more we can get this cancer known the more chance we may have at surviving it ! Please look me up and join the cause and pass this on to as many people as you know.

Kind Regards

Kathryn Seiffert

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