Peritoneal cancer

10 Posts | Page(s): 1 

Peritoneal cancer

by Idkbrittany on Fri Apr 22, 2016 05:56 PM

Quote | Reply
My dad was diagnosed with peritoneal cancerl about a month ago. Pet scan said there were three locations that highlighted, so three tumors i am assuming. Doctors arent giving much information other than they can try avastin with folfox and folfuri(sp?). Jan 2015 my dad had colon cancer, had resection with ileostomy, and did chemo. Tried both folfox and folfuri, but not avastin. Chemo stopped in sept 2015. Waited on a doctor in vermont to do ileostomy reversal, guy took his sweet time and we eventually went to another doctor because it seemed like he blew my dad off. His ileostomy was strangulated because of hernia, which is life threatening. We saw another doctor, and He had the reversal completed on april 4 2016 and no complications. Hes doing really good. So, we saw another oncologist just to get the ball rolling and for information. He told us about the chemo i stated earlier, and hipec. Ive read all about these things, but he is saying that you start with the strongest chemo, then if it doesnt work you just basically go onto lesser effective things. Can anyone possibly give me any futher information? There is such a lack of information about this type and it is concerning. Ive been researching non stop, but i dont know if anyone has had newer drugs, etc??? My dad is also looking into "rick simpson oil" which is some sort of marijuana oil. Any information anyone can give is helpful. I have also seen reviews about graviola, but i really dont know.

RE: Peritoneal cancer

by ABCgirlz on Sat Apr 23, 2016 02:43 AM

Quote | Reply

I am so sorry your dad, you and family have to go through this.  My 33-year-old daughter has stage 4 gastric cancer with the peritoneal mets as well as bone.  I wonder in your dad's case if the peritoneal is metastatic from the colon ca or a new cancer.  It is something to ask about.  On the chemo issue, my daughter had folfox for 6 months and it stopped being affective so they switched her to Taxol and ramucirumab.  We don't think of it as less effective chemo, only that it works on or in a little different way.  Cancer can adapt to how the chemo works so you throw something new at it to get it off balance again.  She is doing good again on it.  

There are several of us active on the board considering the HIPEC proceure.  It is not an easy procedure to go through, but it does improve chances of not having a recurrance by a bunch.  In my daughters case it could raise her chances from basically nil to 30% at 3-5 year survival.  There are also trials going on for abdominal cancer and Keytruda that works with immune system.  

The general thoughts are to start with chemo, do the HIPEC if able and a good candidate and then to trials.  Some people skip right to the trials.  

I am not against supplements and things as an adjunct to chemo or traditional treatment, but i do not think anything else is going to kill cancer fast enough to make a big difference on its own.  Our approach is to keep my daughter as healthy as possible despite the cancer so she feels good, can tolerate the treatment and her body can help fight it.  She uses multivitamin, vitamin D, vitamin C, vitamin A, folic acid and clean eating.  Grape seed extract is one that is under human clinical trials right now for anti-cancer properties.  I do not know of anything else that has passed clinical trials.  Others that have on anecdotal evidence of success are very suspect to us. 

I hope this helps a little.  Let us know if you have more questions, and let us know how things are going. 

RE: Peritoneal cancer

by Idkbrittany on Wed May 04, 2016 08:17 PM

Quote | Reply
Well my dad had his first pet scan today since the first pet scan that discovered the peritoneal cancer. It wasnt a good report, its traveled to his chest. He has not started chemo yet, just playing the waiting game on the doctors. His second opinion doc said that he is able to have the erbitux and something else, as it hasnt mutated. He does not want to get the hipec, and he prob wouldnt be eligible because its traveling now. So he sees his original oncologist next week, hopefully they can get things rolling soon. Does anyone know anything about erbitux and vectrivix (sp?) with this type of cancer? Those were the two types of chemo the doc said to try first along with folfiri or folfix.

RE: Peritoneal cancer

by Fightsignet on Thu May 05, 2016 01:16 PM

Quote | Reply

On May 04, 2016 8:17 PM Idkbrittany wrote:

Well my dad had his first pet scan today since the first pet scan that discovered the peritoneal cancer. It wasnt a good report, its traveled to his chest. He has not started chemo yet, just playing the waiting game on the doctors. His second opinion doc said that he is able to have the erbitux and something else, as it hasnt mutated. He does not want to get the hipec, and he prob wouldnt be eligible because its traveling now. So he sees his original oncologist next week, hopefully they can get things rolling soon. Does anyone know anything about erbitux and vectrivix (sp?) with this type of cancer? Those were the two types of chemo the doc said to try first along with folfiri or folfix.
My gastric cancer came back after 1 year and my medical oncologist wants to start me out with the less aggressive dose of chemotherapy. I am being treated at Johns Hopkins. I don't think anyone really knows which chemotherapy works and what doesn't work because everyone is different. My cancer didn't respond to EOX magic trial while others have done well. There are so many variables that affect rather or not cancer is going to respond to chemo. There really isn't a lot of research out there for gastric cancer because it's not as common as breast, pancreatic, and colon. Those are the cancers that are getting the money to do research. All you can do is stay positive and encourage your Dad not to give up the fight. I wish you and your father the best. Treatment is based off research and there really is no wrong or right.

RE: Peritoneal cancer

by Fightsignet on Thu May 05, 2016 01:22 PM

Quote | Reply
I forgot to mention my Dr. Is starting me out on FOLFIRI.

RE: Peritoneal cancer

by ABCgirlz on Sat May 07, 2016 12:12 PM

Quote | Reply

I am sorry the report was not good.  Hopeful they can get him started on something soon.  I do not know anything about folfiri first hand.  Folfox is nasty stuff, but it often really works well.  The first time or 2 seemed to be the worst with vomitting and fatigue.  After that my daughter started eating better it got easier, with mainly fatique.  

The Erbitux and Vectribix are not exactly chemo.  They can be used alone and or with chemo usually.  They control the growth rate of some cancers.  They attach to a receptor on the tumor and tell it not to divide or not to divide much, epidermal growth factor receptor.  (paraphrasing heavily here.)  

Side-effects of those are fever, constipation, fatigue and a skin rash.  The doctor, or more likely the nurses can tell you what others have used that have been helpful for the side-effects.  One of the drugs my daughter is on has a side-effects of skin rash and she uses over-the-counter cortisone cream on her face at night, and it helps a lot.  

Let us know how things are going. 

RE: Peritoneal cancer

by Idkbrittany on Sat May 07, 2016 10:59 PM

Quote | Reply
Thank you all for replying, it is helpful in understanding some of this. He hasnt been feeling good, in a lot of pain and having constipation but we dont know if its from the reversal surgery or cancer. Pet scan showed no blockages. He sees his oncologist may 16th, so hoping he can start chemo then.

RE: Peritoneal cancer

by fionagreene1 on Tue Jan 08, 2019 02:16 PM

Quote | Reply

On May 07, 2016 10:59 PM Idkbrittany wrote:

Thank you all for replying, it is helpful in understanding some of this. He hasnt been feeling good, in a lot of pain and having constipation but we dont know if its from the reversal surgery or cancer. Pet scan showed no blockages. He sees his oncologist may 16th, so hoping he can start chemo then.

Hi idkbrittany, 

I am really sorry to hear what your dad went through - I know this is from 2016 but I hope you have had some success??

My dad was diagnosed with Colon cancer Nov 2017, had surgery and chemo for 9, first scan in August 2018 was clear, anyway e has now been diagnosed with aggressive metastatic peritoneal cancel and they have said he may be too far gone for HIPEC but we will know for sure in the scan in March and expect him to have closer to 2 years realistically.  Right now they are doing chemo and targeted therapy. Basically I am wondering if you got any further info on the Rick Simpson oil or THC or if your dad has any success with treatment - looking for any answers at all!

Thanks so much!

RE: Peritoneal cancer

by Idkbrittany on Tue Jan 08, 2019 10:40 PM

Quote | Reply
My dad passed away last january unfortunately. He did have some success with the erbitux and folfirox/folfiri treatment. It just stopped working and he had a lot of complications not related to the cancer that put his treatment on hold. He definitely had a lot of complications from the chemo itself and its so difficult to go through it but he fought til the very end. I do think there is something to the oil, i would definitely not rule it out if you have the option to try it. Its hard to know really because of the lack of research. I just know my dad was willing to try anything and he made it 3 years from the time he was initially diagnosed.. longer than they expected. He tried the oil during his first initial treatments but basically stopped because of sepsis from an infection and not having an immune system. So he got a bit scared about continuing to take it..But he even had a surgical procedure during that time and they said they didnt see any cancer at that time.. so i wouldnt rule it out as an option. It wouldnt hurt if he was taking it in combination with chemo. I dont know about trying it on its own. I wish your dad the best.

RE: Peritoneal cancer

by fionagreene1 on Wed Jan 09, 2019 10:58 AM

Quote | Reply

im so sorry for your loss and the pain your poor dad went through, ive no doubt it was a very tough 3 years for you all and then to loose your dad RIP - I hope i did not bring up too much pain for you and I really appreciate you taking the time to reply, he sounded like a super fighter bless him! take care of yourself x

10 Posts | Page(s): 1 
Subscribe to this message board discussion

Latest Messages

View More

We care about your feedback. Let us know how we can improve your CancerCompass experience.