Primary Peritoneal Carcinoma

Dear Marge

Thank you for answering me ..... you give me hope ! I have unfortunately had a bad run of luck with doctors and treatment. Through my whole pregancy with my son they missed the fact I had a huge tumour growing inside me. Even though I complained all the time about the pain I was in. They ran a lot of tests but never picked anything up. It was only 3 months after Lachlan was born did they notice I had a tumour. I had radical hysterectomy and debulking etc and then they started me on the paclitaxel/carboplatin which I had every three weeks. After three treatments I was getting the numbness in my fingers and toes so they took me off that and put me on the doclitaxel. I showed no signs of improvement so they then put me on Caelyx, which has only stabilized the cancer it will not get rid of it. One day they say that this will stop working and they have nothing else. I have been to three more doctors for advice and they all say the same thing - enjoy what time you have left. Grrrrrrrr I would love them to be 31 years old with a lovely husband and 18 month old son and told that. The doctors don't give me hope, they won't even think about giving me any more surgery. As they say the cancer is in the fluid so taking out what ever tumours are there already will only lead to others forming anyway. I have been seeing an intergrative medicine woman and she has me on a lot of natural tablets and I have Vitamin C intravenously every week. I dont know what else to do !

Kathy 

 

Hi Kathy, I just cant believe your story with your young baby. I have a eight month old and three older children. Breast cancer is very high in my family. Both my grandmas, my mother and first cousin who's my age 32. My mom was diagnose with PPC beginning this year but started having stomach problems of last May 07. She went all the way till this year before having Chemo. At first they gave her pain med for stomach pain, then antibiotics,,, then she got her C125 from her cancer dr. (Prev. breast cancer in 98), and the numbers where up. So, they kept telling her it was ovarian cancer,,, confused was my mom cause she had a total hysto. when i was five years old. So,, test after test,, in her home town with her and the dr. confused she waited till after Christmas to come up to Houston to MD Anderson..Same thing test after test,,, for about a month she would drive up here four hours away. So my sister typed in Ovarian Cancer after total hystorectomy and this PPC came up. So my sis emailed the dr. and suggested this and sure enough they diagnosed her. She has had her fourth round of chemo, six hours long each. On her next visit, she will have a CT and surgery or more chemo. So we wait and see. I love comming here and reading since there is no other information out there.. When really there needs to be,,, I mean how many people on here just thought stomach problems and were brushed off by there doctors.. My mom made the mistake of not getting her C125 ONE time and this is the outcome,, ~ Stage 4 cancer... So please if you have cancer history in your familiy get some counceling. We all meet up for a gene counceling on the 21 of April. God Bless you all...

 

On 4/6/2008 Too Young wrote:

Dear Marge

Thank you for answering me ..... you give me hope ! I have unfortunately had a bad run of luck with doctors and treatment. Through my whole pregancy with my son they missed the fact I had a huge tumour growing inside me. Even though I complained all the time about the pain I was in. They ran a lot of tests but never picked anything up. It was only 3 months after Lachlan was born did they notice I had a tumour. I had radical hysterectomy and debulking etc and then they started me on the paclitaxel/carboplatin which I had every three weeks. After three treatments I was getting the numbness in my fingers and toes so they took me off that and put me on the doclitaxel. I showed no signs of improvement so they then put me on Caelyx, which has only stabilized the cancer it will not get rid of it. One day they say that this will stop working and they have nothing else. I have been to three more doctors for advice and they all say the same thing - enjoy what time you have left. Grrrrrrrr I would love them to be 31 years old with a lovely husband and 18 month old son and told that. The doctors don't give me hope, they won't even think about giving me any more surgery. As they say the cancer is in the fluid so taking out what ever tumours are there already will only lead to others forming anyway. I have been seeing an intergrative medicine woman and she has me on a lot of natural tablets and I have Vitamin C intravenously every week. I dont know what else to do !

Kathy 

 

Sunday morning, 4-6-08

Dear Kathy,

I checked my e-mail this morning hoping that I might have a reply from you.  I was not disappointed. :)

I told you about my bad experience with doctors telling me incorrectly (because of the mistake reading dates) that I had a normal CA125.  That experience pales in comparison to your lengthy time of symptoms without any doctor figuring out what was wrong.  

The first three treatment of paclitaxel/carboplatin you had were probably identical to the eight treatments of that combination that I had when I started chemotherapy.  Since they feel they have exhausted the drugs to try for you, would you consider having more treatments like the first three you had?  Eight treatments like that were the beginning of the 53 weeks of chemo that saved my life.  My next paragraph will be about neuropathy caused by chemotherapy.

I have very severe neruopathy in my feet and ankles from my year of chemo.  It's milder in my hands.  Someone asked me what made me finally stop chemotherapy after over a year of it, and I replied (half joking) that I decided that my feet and even my lower legs were finally numb enough to stop.  I asked my internist/rheumatolgist, who is a full professor who teaches in a medical school, if that numbness meant my circulation in my legs is poor.  She said my circulation is all right.  Only the nerves are affected.    I don't think she let that oncologist off easy for his mistake about the CA125. 

This neuropathy is different than diabetic neuropathy that does affect circulation and often causes diabetics even to need amputation.    Diabetic neurapathy can also be painful.  I've read (and think I recall hearing it mentioned at a support group) that some people think it makes them more susceptible to things such as stubbing a toe.  That's not the case with me.  Although my sense of feeling is very limited, I still have the feeling of pressure when I place my feet as I take a step, so it has not affected my safety when I walk.

My grip in my hands is not as strong as it was five years ago.  However, I attribute that more to to my arthritis than to the neuropathy.

I'm not "into" alternative therapies.  I do take 500 mg of vitamn C everyday because my doctor whom I described above thinks everyone should since it's for building resistance in general.  However, I can understand your feeling of wanting to search for anything that might help since your MD's are presently of no help.  I have never followed any special diet other than one that is healthy for everyone with or without cancer.  I don't think food or even mental attitude makes any difference in whether we are cured or not.  Mental attitude might make a difference only in that those of us who remain mentally upbeat are more willing to suffer lots of surgery and treatment that might be curative.

The fact the cancer is in your fluids shouldn't mean you can't be cured.  My cancer got from my abdomen to my chest that way through my lympth glands where it was in the fluid that asprirated from my chest. 

After the more than a dozen tumors were removed from my abdomen, there was still some small spots ( none larger than 1 cm) remaining after the surgery was completed.  Chemotherapy took care of those. 

Maybe there is something more that you haven't told me about why the doctors had you stop treatment after the three treatments of paclitaxel/carboplatin .  Otherwise, if I were you I'd look into having more of them.  It's worth being numb to be alive.  (That sentence sounds like a joke to anyone to hasn't had cancer, but in your case and mine it's true.)

My husband and I have two grand-daughters, 32 and 34 years old.  The older one has a little boy who will be two years old next month.  I have written to you what I would be telling her if she had the illness you and I have experienced.

Thinking of you with concern,

Marge

 

On 4/6/2008 wishawkstwo wrote:

 

On 4/6/2008 Too Young wrote:

Dear Marge

Thank you for answering me ..... you give me hope ! I have unfortunately had a bad run of luck with doctors and treatment. Through my whole pregancy with my son they missed the fact I had a huge tumour growing inside me. Even though I complained all the time about the pain I was in. They ran a lot of tests but never picked anything up. It was only 3 months after Lachlan was born did they notice I had a tumour. I had radical hysterectomy and debulking etc and then they started me on the paclitaxel/carboplatin which I had every three weeks. After three treatments I was getting the numbness in my fingers and toes so they took me off that and put me on the doclitaxel. I showed no signs of improvement so they then put me on Caelyx, which has only stabilized the cancer it will not get rid of it. One day they say that this will stop working and they have nothing else. I have been to three more doctors for advice and they all say the same thing - enjoy what time you have left. Grrrrrrrr I would love them to be 31 years old with a lovely husband and 18 month old son and told that. The doctors don't give me hope, they won't even think about giving me any more surgery. As they say the cancer is in the fluid so taking out what ever tumours are there already will only lead to others forming anyway. I have been seeing an intergrative medicine woman and she has me on a lot of natural tablets and I have Vitamin C intravenously every week. I dont know what else to do !

Kathy 

 

Sunday morning, 4-6-08

Dear Kathy,

I checked my e-mail this morning hoping that I might have a reply from you.  I was not disappointed. :)

I told you about my bad experience with doctors telling me incorrectly (because of the mistake reading dates) that I had a normal CA125.  That experience pales in comparison to your lengthy time of symptoms without any doctor figuring out what was wrong.  

The first three treatment of paclitaxel/carboplatin you had were probably identical to the eight treatments of that combination that I had when I started chemotherapy.  Since they feel they have exhausted the drugs to try for you, would you consider having more treatments like the first three you had?  Eight treatments like that were the beginning of the 53 weeks of chemo that saved my life.  My next paragraph will be about neuropathy caused by chemotherapy.

I have very severe neruopathy in my feet and ankles from my year of chemo.  It's milder in my hands.  Someone asked me what made me finally stop chemotherapy after over a year of it, and I replied (half joking) that I decided that my feet and even my lower legs were finally numb enough to stop.  I asked my internist/rheumatolgist, who is a full professor who teaches in a medical school, if that numbness meant my circulation in my legs is poor.  She said my circulation is all right.  Only the nerves are affected.    I don't think she let that oncologist off easy for his mistake about the CA125. 

This neuropathy is different than diabetic neuropathy that does affect circulation and often causes diabetics even to need amputation.    Diabetic neurapathy can also be painful.  I've read (and think I recall hearing it mentioned at a support group) that some people think it makes them more susceptible to things such as stubbing a toe.  That's not the case with me.  Although my sense of feeling is very limited, I still have the feeling of pressure when I place my feet as I take a step, so it has not affected my safety when I walk.

My grip in my hands is not as strong as it was five years ago.  However, I attribute that more to to my arthritis than to the neuropathy.

I'm not "into" alternative therapies.  I do take 500 mg of vitamn C everyday because my doctor whom I described above thinks everyone should since it's for building resistance in general.  However, I can understand your feeling of wanting to search for anything that might help since your MD's are presently of no help.  I have never followed any special diet other than one that is healthy for everyone with or without cancer.  I don't think food or even mental attitude makes any difference in whether we are cured or not.  Mental attitude might make a difference only in that those of us who remain mentally upbeat are more willing to suffer lots of surgery and treatment that might be curative.

The fact the cancer is in your fluids shouldn't mean you can't be cured.  My cancer got from my abdomen to my chest that way through my lympth glands where it was in the fluid that asprirated from my chest. 

After the more than a dozen tumors were removed from my abdomen, there was still some small spots ( none larger than 1 cm) remaining after the surgery was completed.  Chemotherapy took care of those. 

Maybe there is something more that you haven't told me about why the doctors had you stop treatment after the three treatments of paclitaxel/carboplatin .  Otherwise, if I were you I'd look into having more of them.  It's worth being numb to be alive.  (That sentence sounds like a joke to anyone to hasn't had cancer, but in your case and mine it's true.)

My husband and I have two grand-daughters, 32 and 34 years old.  The older one has a little boy who will be two years old next month.  I have written to you what I would be telling her if she had the illness you and I have experienced.

Thinking of you with concern,

Marge

Kathy,

I hit the send button too soon. After rereading now I'm embarressed by my spelling and grammatical errors.  I wrote:

The fact the cancer is in your fluids shouldn't mean you can't be cured.  My cancer got from my abdomen to my chest that way through my lympth glands where it was in the fluid that asprirated from my chest. 

After the more than a dozen tumors were removed from my abdomen, there was still some small spots ( none larger than 1 cm) remaining after the surgery was completed.  Chemotherapy took care of those.

I should have written:

The fact the cancer is in your fluids shouldn't mean you can't be cured.  My cancer got from my abdomen to my chest that way through my lymph glands where it was in the fluid that was aspirated from my chest. 

After the more than a dozen tumors were removed from my abdomen, there were still some small spots ( none larger than 1 cm) remaining after the surgery was completed.  Chemotherapy took care of those.

 

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  

 

 

 

On 4/6/2008 twithers wrote:

Hi Kathy, I just cant believe your story with your young baby. I have a eight month old and three older children. Breast cancer is very high in my family. Both my grandmas, my mother and first cousin who's my age 32. My mom was diagnose with PPC beginning this year but started having stomach problems of last May 07. She went all the way till this year before having Chemo. At first they gave her pain med for stomach pain, then antibiotics,,, then she got her C125 from her cancer dr. (Prev. breast cancer in 98), and the numbers where up. So, they kept telling her it was ovarian cancer,,, confused was my mom cause she had a total hysto. when i was five years old. So,, test after test,, in her home town with her and the dr. confused she waited till after Christmas to come up to Houston to MD Anderson..Same thing test after test,,, for about a month she would drive up here four hours away. So my sister typed in Ovarian Cancer after total hystorectomy and this PPC came up. So my sis emailed the dr. and suggested this and sure enough they diagnosed her. She has had her fourth round of chemo, six hours long each. On her next visit, she will have a CT and surgery or more chemo. So we wait and see. I love comming here and reading since there is no other information out there.. When really there needs to be,,, I mean how many people on here just thought stomach problems and were brushed off by there doctors.. My mom made the mistake of not getting her C125 ONE time and this is the outcome,, ~ Stage 4 cancer... So please if you have cancer history in your familiy get some counceling. We all meet up for a gene counceling on the 21 of April. God Bless you all...

Dear twithers

I know how hard it is to be on this side of the fence but I definately don't know how I would handle being in your position. My mother is an absolute guardian angel to me and without her I would of given up a long time ago. To have to watch someone close to you go through this horrible ordeal would be terrible. Give your mum lots of hugs and kisses as I'm sure you do but I tell you what, to me a big hug is the best medicine. It absolutely shocks me to hear how so many doctors are hopeless in this situation. I understand that this is a very hard disease to diagnose but why don't they just do a CA125 test when they are questioning any sort of females with stomach problems. I know this test is only part of the diagnosis but it is a start. It is unbelievable how we all have to do our own research on this and then go back to the doctors to let them know what they should be telling us. I pray for you that your mums next test results come back as a positive result and that she recovers quickly. I don't know if they do intravenous Vitamin C and B17 where you are but I will tell you that it has made a huge difference to my recovery each time from chemo. I actually feel well enough, three weeks after chemo, to be mum until my next round of chemo and believe me I make the most of it. Just playing with my little boy every day gives me the strength to keep on fighting. Please wish your mum and family all the best - you are in my prayers

Take care

Kathy

Kathy,

I, too, am surprised at what your doctors are telling you.  My sister was diagnosed in December of 2005, stage 4.  She was misdiagnosed for a long time prior.  She has had to undergo a lot of chemo but finally has been given a break for three months as her doctors have numbers down below 20 and they are stable.  Chemo side affects have been rough but she continued with the chemo.  Have you had the chemo where they put it directly into your abdomin?  My sister did that for a long time and it was rough but it helped.  Then she started a different type of chemo which she took for nine months.

Please keep exploring your options and keep positive.  I know it is hard enough to focus on getting well, but keep researching.  Also, if you search Google on "Leah peritoneal" - she has a group she started with this type cancer, which she also has.  But maybe you can contact others in her group - see what their doctors are doing.

Keep taking good care....Kelly 

 

 

On 4/13/2008 Kelrunran wrote:

Kathy,

I, too, am surprised at what your doctors are telling you.  My sister was diagnosed in December of 2005, stage 4.  She was misdiagnosed for a long time prior.  She has had to undergo a lot of chemo but finally has been given a break for three months as her doctors have numbers down below 20 and they are stable.  Chemo side affects have been rough but she continued with the chemo.  Have you had the chemo where they put it directly into your abdomin?  My sister did that for a long time and it was rough but it helped.  Then she started a different type of chemo which she took for nine months.

Please keep exploring your options and keep positive.  I know it is hard enough to focus on getting well, but keep researching.  Also, if you search Google on "Leah peritoneal" - she has a group she started with this type cancer, which she also has.  But maybe you can contact others in her group - see what their doctors are doing.

Keep taking good care....Kelly 

 

Dear Kelly

Thank you very much for the information. I was hoping you could ask your sister what chemo was being given to her through each stage. I haven't had the chemo administered through the abdomen and have not had it offered to me as an option. I think this would be the ideal way to treat this cancer as it is only in the abdomen area with me ( I have tumours on most of my organs - liver,bowel,bladder,under my lungs). I am going to put this forward to my doctor as soon as I can get in touch with her. I am in Australia and even though I have I asked my doctors if I should look overseas for treatment, they keep telling me that they are treating me the same as I would be any where else in the world. Hmmmmmm I don't think so !

Take care

Kathy 

 

Kathy,

I will have my sister write her treatment plan and then I'll post it.  The treatment directly in the abdomen was new as of January 2006 so I would definitely ask about it.

Here is a really great website.  There is information on this website about a Yahoo group for this type of cancer as well.  Additionally, I've emailed two doctors and they actually responded to so please use this website as a resource.  http://www.pmppals.org/

Also, here is Leah's link:

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

This might help connect you with others.  Unfortunately, Leah is not doing very well right now but you might be able to link up with others. 

I'll get my sister's information as soon as I can.

Keep taking care, Kelly 

 

 

Dear Kelly

Thank you so much for the information you have provided. You have done more for me in a couple of messages than any doctor has done for me in the last year and a half. I am so ever grateful

Take Care

Kathy