Primary Peritoneal Carcinoma

Thank you Col for answering my message. It just helps to know someone is hearing me. Since I have been having treatment for so long so many people ( close friends included ) seem to have lost interest in me. When I was first diagnosed everyone rallied around and now even my closest friend has basically turned her back on me. I know everyone finds cancer hard to deal with but one thing everyone has to remember is that the person who has it, deals with it every second they are alive. My husband has been struggling to come to terms with the fact that I will unfortunately die from this as I am looking ok - good infact. Everyone seems to think you are only suffering when you start to wilt away. How did you deal with your own emotions ? I want to try and help my husband but I really don't know how. Every time I have chemo I say it will be my last but then somehow I find the strength to have another go .... maybe its that cheeky little grin I get from my little boy ! Reading back I've made it sound like I have no support but that is far from the truth - I have had so many friends show true courage through this and be an absolute support. My dearest friend Lee takes a day off work every time I have chemo to come and sit with me and my mum is my guardian angel ! To everyone who reads this and has someone close going through this ordeal please remember just to be there is help enough. I find that even after 15 months of treatment sometimes I just need a shoulder to cry on and sometimes that is hard to find. I unfortunately need some sad answers from anyone who has seen someone go through this as doctors don't know a thing ..... Does this take you slowly ? or can you tell when you are coming to the end ? I hate asking these sort of questions but unfortunately need to know for my own sanity. Love to all of you reading this and keep remembering, as I do, miracles do happen !

Kathy

I am new to this site but not to cancer unfortunatly. My mom was diagnosed in Oct 04 with stage IV PPC. She underwent a total hysterectomy and debulking. 6 wks later started Taxol/Carbo (which almost killed her) they had to slow the drip to take 12 hours to complete ONE session. So this was our life for the next year or so. Every 3 weeks we would spend an entire day at Hackensack H. A bunch of times we had to delay treatments due to blood counts. Sometimes we ended up in the ER due to side effects until she became intolerant to the taxol/carbo. Fortunatly for us at that point her scans were clear and her CA 125 was 7.

Then she went into a 8 month remission. After the  cancer returned in the same area  we started Gemzar. She had about 9 treatments and had another 8 month remission. Once again I got the call from her doctor that her CA 125 went from 10 in Nov 07 to 97 in Jan 08.

This is our third time in treatment and now she is on Doxil. She is FULL of fluid. The first diagnosis she did have alot of fluid. The second time she had little to no fluid build up. THIS time she started with alittle. Now she is totally uncomforatble and full. She was drained in January they took 2 Liters. The fluid was back in 3 days. She was going to get drained again but the doctor told her the fluid would be back just as soon that she has to let the chemo to its work. I asked the doctor why is there so much fluid this time around when she had none last year. His answer was that the cancer cells are stronger now. Well that didn't make me feel any better.

So we sit and get treatment and wait. It is now almost April. SHe is going for her third treatment with Doxil Monday. Her CA 125 has gone from 97 in Jan to 118 in March and her fluid is tremendous. She is fatigued and uncomfortable. Not the mother I am used to. She used to be OK after a few days after treatments. Like she was totally normal. Now she is always tired, achey, sore, she is shoping in maternity.

The doctor continues to tell us the medicine needs time give it time it is working.

Forgive me if I am wrong but I think that is a crappy answer. This is my moms life we are talking about. This isn't a lousy cold that we are dealing with. We don't have time to wait and wait and wait. I feel like the cancer is spreading and here we are just waiting for the Doxil to work. What if it isn't??

What should I do? I want to go to Sloan K for a second opinion but my mom puts all her faith in this doctor and feels the drug is working and doesn't want to offend her current doctor by going elsewhere. I don't know what else to do!

I wonder how many other people that suffer from this aweful disease had alot of fluid. Does this mean she is approaching the end. When I google ascities and PPC it says the prognosis is that much more poor. I don't have the heart to tell my mother. She seems to think she is going to pull through this just like the last 2 times.

HELP!

 

On 3/20/2008 Too Young wrote:

Thank you Col for answering my message. It just helps to know someone is hearing me. Since I have been having treatment for so long so many people ( close friends included ) seem to have lost interest in me. When I was first diagnosed everyone rallied around and now even my closest friend has basically turned her back on me. I know everyone finds cancer hard to deal with but one thing everyone has to remember is that the person who has it, deals with it every second they are alive. My husband has been struggling to come to terms with the fact that I will unfortunately die from this as I am looking ok - good infact. Everyone seems to think you are only suffering when you start to wilt away. How did you deal with your own emotions ? I want to try and help my husband but I really don't know how. Every time I have chemo I say it will be my last but then somehow I find the strength to have another go .... maybe its that cheeky little grin I get from my little boy ! Reading back I've made it sound like I have no support but that is far from the truth - I have had so many friends show true courage through this and be an absolute support. My dearest friend Lee takes a day off work every time I have chemo to come and sit with me and my mum is my guardian angel ! To everyone who reads this and has someone close going through this ordeal please remember just to be there is help enough. I find that even after 15 months of treatment sometimes I just need a shoulder to cry on and sometimes that is hard to find. I unfortunately need some sad answers from anyone who has seen someone go through this as doctors don't know a thing ..... Does this take you slowly ? or can you tell when you are coming to the end ? I hate asking these sort of questions but unfortunately need to know for my own sanity. Love to all of you reading this and keep remembering, as I do, miracles do happen !

Kathy

Hello Kathy,

Firstly let me apologise, somehow this message has been marked as not being tracked and i dont kknow how.

Yes we found the same as you, a number of "friends" suddenly disappered when Elaine was diagnosed, like you I appreciate it is difficult to deal with but cancer is so common that 1 in 3 of us will have to deal with it at some time and sticking your head in the sand is no answer. I can only imagine how it must feel for you, I think until you are diagnosed nobody can start to imagine what it must feel like. I think I went through all the stages that most others go through, shock at the news of hearing the diagnosis, anger why us and finally an acceptance and a descision to try and make the most of the time you have left. Elain found it good to talk to other cancer sufferers, she used to attend a weekly session at a local cancer clinic and found this very beneficial. In my job I found taling to people outwith the family helped, sometimes family members just dont want to hear and are not always the best to speak to. I was lucky in my work that I spoke to many strangers at that time and while talking they would discuss family members and illnesses and I would talk about Elain and her condition. SHe was incredibly stong during her illness which was unusual as she was quite a quiet and shy person before being diagnosed. Her faith helped her enourmously, she had always been a devout christian throughout her life.

I hope this does not upset you reading this, if so I do honestly apologise. When the cancer returned and the liquid started to gather in her abdomen again the doctors attempted one last batch of chemo but she was to weak to deal with it and she was given pain killers, she fradually deteriorated from that point and in the final 5 to 7 days slipped into unconsciousness and I held her hand untill she quietly slipped away.

Take care and keep in touch, my thoughts and prayers are with you and your family, stay as strong as you can.

Colin. 

 

Dear Colin

Thank you so much for once again answering my message. I am so ever grateful as I could imagine this is still very hard for you to deal with. I just need to know as much as possible as the doctors are not helping enough. I am in Australia and I thought if I had private cover I would get the best of care, unfortunately this isn't the case.

I have been doing my own research and have just found a biotech company called Novogen. They have been testing a drug called Phenoxodiol ( multiple signal transduction regulators - MSTRs ). This is currently undergoing  Phase III clinical trials. Since my doctors have told me there is no other help for me I am going to follow this up and see if I can be included in this trial ..... it actually mentions Primary Pertioneal Cancer as one they are trying to treat  -  Yah ! about time They are treating this with a combination of carboplatin for late stage chemoresistant ovarian cancers plus a few more.

Fingers crossed my chemo specialist will look into this before she closes her folder on me one more time ! If anyone else is reading this there are trials for this drug going on all round the world - check out the Novogen website for more information.

Until then keep smiling even if sometimes it is through gritted teeth lol

Kathy

I hear you, my Mom went throught the same ordeal.  Unfortunately she lost her battle in October.  I found more information on the internet and it gave me hope, but also scared me at the same time.  There is alot of good info out there but I think the key is persistance.  PPC is a tough, tough cancer and from what I know not cureable but hopefully through treatments they will extend your mom's time.  Please keep positive and help her fight this dreadful desease.  My prayers are with you.

Just wanted to know how you all are doing.  My Mom lost her battle in October with the same diagnosis.  She went the same route with treatments and she never REALLY heard the words "not cureable"  PPC is in an area that is inoperable and the acities buildup is the main indication of how treatments are going (from my experience).  I personally have alot of "what if we did this" or "what if she would have done that" going thru mind mind on a daily basis but I think that comes down to denial.  My Mom was a perfectly healthy 76 year old.  Walked, swam, bowled and golfed almost everyday of the week until she got this news and went into seclution.  Attitude is everything but God is more powerful.  You do what you have to do to make yourself feel you have exhausted all your resources.  We did not let any of the doctors off the hook with responses that we did not understand.  They may not like it, and at the end of the day they (beleive it or not) are as frustrated as you are at times.  This is such a rare cancer that they may not have the answers but should be willing to research anything that you present to them within reason.  I could write a book here but I hope and pray you and your Mom are fighting with everything you have.  If it gets really bad get a book called Final Gifts it helped me and my family more than I can say and I was at peace when she left us.  Take care, we have a Relay for Life in memory of cancer victims and survivors,  I will pray and light a luminary for everyone fighting this horendous desease.  Barb