Primary Peritoneal Carcinoma

 

Thank you for all this information.  That is great news.  I will keep you in my thoughts.

 My mother had surgery today and they thought they were going to optimally debulk her.  Unfortunately they were only able to suboptimally debulk her with 2 nodules remaining.  1 on an intestine and 1 on the pelvis ,,,he said he couldn't remove them with out taking an organ she needed.  The positive side is he thought he was going to have to remove the bowel, however, the cancer did not penetrate the walls.  He removed all the omentum which he said was very successful.

She now can not have Interperitneal Chemo because the size of the residual cancer is larger than 1 cm.  Have you heard anything different?

 Although disappointed we will remain positive and will work to find the best treatments.  So any ideas and things you can share is wonderful.

I will now research sub optimal debulking.  Comments?

I believe the surgeon is very competant and hard working.  With that said, I'm concerned that they only do so much and I want to request the best treatments possible.  We are with kaiser.  He said the next step is chemo.

 How did you find a doctor that administers vitamin C and B17 interveniously.  I imagine this is not something a gynecological oncologist will recommend.  How expensive is it?

Thanks for your wonderful email.

Chopps

 

Dear Chopps

I had a radical hysterectomy, bilateral salpingo-oophorectomy-omentectomy and delbulking for  primary peritoneal carcinoma on the 11th of January 07. I ended up with many tumours and lesions spread through out my organs. As with your mother, I was lucky that the cancer hadn't penetrated the bowel. At one stage I had six tumours on my liver. I managed to come across my Doctor who administers the Vitamin C through a naturopath I was seeing. I am in Australia and we have a website called ACNEM where accredited doctors can be found. You need to look for someone who deals with Biological Therapies. Many western trained doctors will not perform this practice as it is not in the realms on practice. They may even try to talk you away from this form of treatment. I have to order my Vitamin B17 off the website from Mexico and have it shipped to Australia. My doctor then adds 3 of the vials of the B17 into my vitamin C treatment every week. Please believe me when I say that this treatment alone has got rid of all of my tumours when chemo alone did nothing. That does not mean chemo will not work for your mother, you just have to keep your mind open to every possibility. The western doctors told me I would not survive 6 months and that was a long time ago now and I am 90% healthy and happy again. This treatment has given me a new lease on life and at last I can start believing that I have found something to cure this cancer ..... only time will tell :)

Keep fighting and never give up ... don't always go on first opinions and always ask lots of questions. I know this can drive the doctors nuts but information is your power. I thought I was dead a long time ago but I am still here - there is a cure we just have to work out what it is

Big hugs and kisses to you all xxxxx

 

 

On 4/7/2008 Too Young wrote:

Dear Marge

Unfortunately my specialist refuses to put me back on the paclitaxel/carboplatin. Her reasons for this are that because the neruopathy started straight away when I began treatment and became worse with each treatment and also because I showed no signs of improvement after the first three rounds. I have continually asked her why they don't try me on it again and she just keeps saying that if it didn't work the first time round it won't work again. I have been to 3 other oncologists and they all are in agreement - there are only 5 of the specialist oncologists where I am. The last doctor I went to was pretty straight forward with me, after he had found out it was my third opinion, and said I had better face the fact I was going to die from this. I really now have no trust in western medicine and have found that alternative treatment is giving me more hope. The only reason that I keep having the chemo treatments is that I am truly too scared to stop. My CA125 is now sitting around the 130 mark but has never gone down since I was diagnosed.I live in Adelaide, South Australia and I am always wondering if they are up to date with the sort of treatment I should be having. My GP doctor and I have a very good relationship and he always tells me that they know here what everyone else does. It doesn't stop me questioning though whether I would be better to try somewhere else in the world.

Take care

Kathy  

 

 

Hi Kathy

After reading all the messages posted on this site I nearly fell off my chair when I read that you live in Adelaide. My mother who also lives in Adelaide was diagonised with this cancer about a month ago and has had about 4 rounds of the Carboplatin/Paxlitaxol via a port. She has the Paxlitaxol every week and then both every 3 weeks. They have told her that there is not point in operating as the cancer cells are like grains of rice spread there. At this point the cancer has not spread or attached itself to any organs which is good. Her CA125 leval was 86 when she started Chemo and has already gone down to 36, that must be a good sign surely??

It is so hard to find support and info in this form of cancer and is quite frightening to me as I live in Brisbane and trying to fly down regularly to see her. She did have Breast Cancer 5 years ago and was lucky to only have to have a small portion removed and 6weeks radiation. They are saying that the two cancers are not connected in anyway.

Mum lives on her own as Dad passed away 13years ago but my sister lives only a few streets away which is lucky. I feel so helpless not being with her all the time. She is trying to remain confident and like you wondered at first if Adelaide was up to date on the latest treatments. Her specialist has advised her that he is one of the leading specialists in Australia on this particular cancer, so lets hope he is right.

I would love Mum to be able to be put in touch with someone that has gone through or going through this as she feels so alone.

Please write back when you get a chance and I really hope you are doing ok and my thoughts are with you.

 

Kind regards

Emma (worried daughter).

 

On 10/21/2008 Emma1 wrote:

 

Hi Kathy

After reading all the messages posted on this site I nearly fell off my chair when I read that you live in Adelaide. My mother who also lives in Adelaide was diagonised with this cancer about a month ago and has had about 4 rounds of the Carboplatin/Paxlitaxol via a port. She has the Paxlitaxol every week and then both every 3 weeks. They have told her that there is not point in operating as the cancer cells are like grains of rice spread there. At this point the cancer has not spread or attached itself to any organs which is good. Her CA125 leval was 86 when she started Chemo and has already gone down to 36, that must be a good sign surely??

It is so hard to find support and info in this form of cancer and is quite frightening to me as I live in Brisbane and trying to fly down regularly to see her. She did have Breast Cancer 5 years ago and was lucky to only have to have a small portion removed and 6weeks radiation. They are saying that the two cancers are not connected in anyway.

Mum lives on her own as Dad passed away 13years ago but my sister lives only a few streets away which is lucky. I feel so helpless not being with her all the time. She is trying to remain confident and like you wondered at first if Adelaide was up to date on the latest treatments. Her specialist has advised her that he is one of the leading specialists in Australia on this particular cancer, so lets hope he is right.

I would love Mum to be able to be put in touch with someone that has gone through or going through this as she feels so alone.

Please write back when you get a chance and I really hope you are doing ok and my thoughts are with you.

 

Kind regards

Emma (worried daughter).

Dear Emma

             It is great to hear that your mum is responding so well to treatment. My oncologist told me that when I didn't respond to first lot of treatment ( Pax/Carbo ) that there was basically nothing else they could do for me - talk about giving up hope a little too soon ! I was lucky enough to find a doctor up at Stirling who does the IV Vitamin treatment. My oncologist had told me not to go down this path and now she is even sending patients there after seeing my great results. Tell your mum that if she ever needs someone to talk to that I am only a phone call away. Since we can't publish any of our personal details on here - you could look me up on Facebook where I can give you my private email and then my phone number, I am under Kathryn S and my birth date is

--Message edited by CancerCompass staff. For personal protection, birth date removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--

Take care Emma and please pass on my best wishes to your mum.

Kind Regards

Kathryn S

Hi Kathryn

 

thanks so much for your quick response. I will contact you shortly via Facebook to get your personal email address to forward onto Mum.

Kind regards

Emma

 

Hi everyone, I've got a bit of a question or at least confirmation that someone else has experience something similar,

My mom passed away from PPC a few weeks okay. The whole expereience was roughly a month begining to end, maybe two if you take the early discomfort in.

She had a complete hysterectomy and de-bulking procedure done,  there were  2-3 remaining nodes, but the surgeon was pleased and chemo was schedule, and a intro-port was placed. 

Mom was sent home about 6 days after the surgery and started to do well for about a week, up and about doing things, still sore of course, but feeling well. Starting one week after she got home on a tuesday.

Then loss of appetite and vomiting on eating or drinking, the 1st meeting with the Chemo dr. was scheduled for friday. He did bloodwork and found Staph, and called sat. morning and told her to go to the ER. they started Antibiotics and removed the two ports. After the port removal though her condition plummeted, Her blood PH was screwy, her respiratory function started to fail. she was put on a respirator and passed the next saturday.

 Basically the whole time the dr.s were stumped, the infectious disease said it had to be the cancer, the oncologists said it had to be an infection, eventually the infectious disease drs won, and they said she was too weak to attempt any possible oncologically based treatments.

I guess I just don't understand what happened physically?  One dr. said sometimes bodies react poorly to surgery, and since there was cancer left it freaked out (my words). Is this common? 

Good luck to everyone fighting this, you're in my thoughts. 

 

On 11/14/2008 shiplore wrote:

Hi everyone, I've got a bit of a question or at least confirmation that someone else has experience something similar,

My mom passed away from PPC a few weeks okay. The whole expereience was roughly a month begining to end, maybe two if you take the early discomfort in.

She had a complete hysterectomy and de-bulking procedure done,  there were  2-3 remaining nodes, but the surgeon was pleased and chemo was schedule, and a intro-port was placed. 

Mom was sent home about 6 days after the surgery and started to do well for about a week, up and about doing things, still sore of course, but feeling well. Starting one week after she got home on a tuesday.

Then loss of appetite and vomiting on eating or drinking, the 1st meeting with the Chemo dr. was scheduled for friday. He did bloodwork and found Staph, and called sat. morning and told her to go to the ER. they started Antibiotics and removed the two ports. After the port removal though her condition plummeted, Her blood PH was screwy, her respiratory function started to fail. she was put on a respirator and passed the next saturday.

 Basically the whole time the dr.s were stumped, the infectious disease said it had to be the cancer, the oncologists said it had to be an infection, eventually the infectious disease drs won, and they said she was too weak to attempt any possible oncologically based treatments.

I guess I just don't understand what happened physically?  One dr. said sometimes bodies react poorly to surgery, and since there was cancer left it freaked out (my words). Is this common? 

Good luck to everyone fighting this, you're in my thoughts. 

Hi Shiplore,

Words can not express how sorry I am for you and your family. 

We were concerned about Staph infecton from the time she went into the hospital.  It is a real problem in hospitals.  My grandmother went into the hospital for bedsores many years ago and the Dr. told my father he could leave and she was fine.  They called him 3 hours later and told him to get there because she wasn't going to make it through the night.  She didn't and it was staph.

My mother was not a candidate for the IP port because the Dr. thought he was going to need to do something with the bowel.  When he does that he puts the port in later because of fear of infection.  After surgery she wasn't a candidate for the IP port because her nodules were larger than 2 cm. and he felt IV would be better for her.

It seems strange she would have died from PPC so quickly.  If she had a staph infection that makes sense.  I think for your piece of mind, I would get a second opinion as to what happened.  The disease is bad enough and to have to deal with all the questions and not really get answers is very frustrating.

I know I'm not much help.  Know that I am thinking of you and family.  Hang in there.

Caren

 

I hope I'm doing this correct, My mother in law has this type on cancer up until 2 weeks ago she was just rolling along with no pain or anything and then her tummy just blew up like she was going to have a baby,this is when we got the bad news. She had surgery on 11/24/08 they removed 40 lbs of fluid and we are waiting for her to get stronger for chemo. After surgery her Doctor didn't  think she would make it out of the hospital because her kidneys shut down during surgery but the next day she rebounded and is doing pretty good for what she went through.My question after reading about others with this.is there a cure or do we just do chemo until she can't take it any longer and will her quality of life be  compared to what it was before this.. 

 

On 8/11/2008 SouthernGal wrote:

Hi Girls,

I was diagnosed 13 yrs ago with PPC.  I am cancer free.  When I was diagnosed I desperately wanted to talk to another survivor but there were none in this area.  I had stage IIIc, surgery,chemo and a ruptured bowel after the second chemo.  That made me really sick and we had to postpone chemo for three months.  I was in and out of intensive care and in the hospital for 3 months.  I was basically told that my chemo treatments might extend my life but nothing was said about survival, other than I should get my affairs in order. 

 I am writing just to tell you it can be beaten. I'm 58 now and leading a relatively normal life.  I have extensive scaring from the peritonitis (infection caused by the rupture) .  My diet is a little funny to keep me from having obstructions but, it's not difficult to live with.  I can still have chocolate. 

If this helps any one wondering about survival, my goal has been met.  I'll be glad to respond to any one who wishes to talk.  I'm very lucky and  will help if I can.

SouthernGal.  

Hi southern Gal

I really need to haer this from someone right now

I feel after reading hospital journals. and their stats....

that its not going to be easy.. and I've lived a ahd life so far..LOL

and  got so worn down prior to thsi diagnosis...

I do need to talk.. if you are avaialble

thanks

Mary Anne

 

 

On 8/28/2008 Too Young wrote:

 

On 7/21/2008 leahland wrote:

for anyone who needs more information on this cancer you can contact leah at

http://home.att.net/~leahland/peritonealcancer.html

she has lots of information and is very supportive for other victims.

i know, i'm her.

 leah

Hey Leah

I hope you get the email I am sending; i was very touched by your story & have decided I need to keep journalling too

- Hopefully we can connect....  

- Mary Anne

 

I have just read 85% of your blogs ( there is a lot of reading there ) and I want to thank you for sharing your story. I no longer feel so alone with this stupid cancer. Would love to hear back from you at some stage if you could spare the time !

Thanks ... Kathy :) 

 

 

On 9/26/2008 Too Young wrote:

 

Thank you for all this information.  That is great news.  I will keep you in my thoughts.

 My mother had surgery today and they thought they were going to optimally debulk her.  Unfortunately they were only able to suboptimally debulk her with 2 nodules remaining.  1 on an intestine and 1 on the pelvis ,,,he said he couldn't remove them with out taking an organ she needed.  The positive side is he thought he was going to have to remove the bowel, however, the cancer did not penetrate the walls.  He removed all the omentum which he said was very successful.

She now can not have Interperitneal Chemo because the size of the residual cancer is larger than 1 cm.  Have you heard anything different?

 Although disappointed we will remain positive and will work to find the best treatments.  So any ideas and things you can share is wonderful.

I will now research sub optimal debulking.  Comments?

I believe the surgeon is very competant and hard working.  With that said, I'm concerned that they only do so much and I want to request the best treatments possible.  We are with kaiser.  He said the next step is chemo.

 How did you find a doctor that administers vitamin C and B17 interveniously.  I imagine this is not something a gynecological oncologist will recommend.  How expensive is it?

Thanks for your wonderful email.

Chopps

 

Dear Chopps

I had a radical hysterectomy, bilateral salpingo-oophorectomy-omentectomy and delbulking for  primary peritoneal carcinoma on the 11th of January 07. I ended up with many tumours and lesions spread through out my organs. As with your mother, I was lucky that the cancer hadn't penetrated the bowel. At one stage I had six tumours on my liver. I managed to come across my Doctor who administers the Vitamin C through a naturopath I was seeing. I am in Australia and we have a website called ACNEM where accredited doctors can be found. You need to look for someone who deals with Biological Therapies. Many western trained doctors will not perform this practice as it is not in the realms on practice. They may even try to talk you away from this form of treatment. I have to order my Vitamin B17 off the website from Mexico and have it shipped to Australia. My doctor then adds 3 of the vials of the B17 into my vitamin C treatment every week. Please believe me when I say that this treatment alone has got rid of all of my tumours when chemo alone did nothing. That does not mean chemo will not work for your mother, you just have to keep your mind open to every possibility. The western doctors told me I would not survive 6 months and that was a long time ago now and I am 90% healthy and happy again. This treatment has given me a new lease on life and at last I can start believing that I have found something to cure this cancer ..... only time will tell :)

Keep fighting and never give up ... don't always go on first opinions and always ask lots of questions. I know this can drive the doctors nuts but information is your power. I thought I was dead a long time ago but I am still here - there is a cure we just have to work out what it is

Big hugs and kisses to you all xxxxx

 

I am interested also in IV vit C, but dont even know if its available where I live in Canada.    I will have to ask.

Its been a month since my surgeyr. and  this week I go meet with oncologist  to hear what  his plan of action is.....

I just hope he will also HEAR me.....

Thinking of everyone  as  PPC sisters 

I am waiting to meet with a naturopath, and I ahve dietician & reflexologist ( who is the one who actually  detected something up in my uterus & suggested I go see my doctor " )   which led to a Pap... and then eventually to an oncologist 5 months later, and by end ofOctober I was in surgery.

Im concerned I ahve been feeling nuaseated for about a week....thought it was just cancer/ or recovery related...

Hope to hear from you

- Mary Anne