Specifically mucinous adenocarcinoma

jparker812

my experience with this type of cancer
Kathleen,

I hope you both are still around and making it. As you may have found out there is not much info on this disease, as I have a type that is a mass outside of the lower large intestine and has nodules at different parts of my abdomen. I experienced a great deal of constipation the first year, but now that I have my meds right I go everyday. I take the Mirrolax every morning to stay regular. Eat well, that is the key. Use fruit blended with gensoy powder (Walmart has it) if diet is poor. try using some "urbal weed" for nausea and increase desire to eat. maintaining weight is the key to survival,along with a good mental state. I see no pattern yet, other than we have been able to keep it stable and recently it was reduced in size by the opinion to "just try something" so I went on Xeloda for 6 months and after 2 years it finally showed reduction. I am going to see Dr. Armondo Sardi and the Mercy Hospital in Baltimore. I have been rejected by other surgeons that perform the IPHC procedure along with the surgery, but he has agreed to see me. Reply back on who you have seen that is considered an expert and I'll assist you. I have done 2 years of research into the treatment and cause of this disease so I may be able to help you survive. I have been going for 2 years and counting since diagnosed, and I was sick long before I went. By the time the symptoms show up its too late. A colonoscopy would not have found it since it was outside, until it's too big to allow the scope to pass, which is how mine was found.

NJC

Kathleen,
My wife was
Kathleen,

My wife was diagnosed with Mucinious Adenocarcinoma this past September. This type of cancer only represents 10-15% of colon cancer. It is treated the same. Unfortunately, the 15-20 tumors that are spread throughout my wife's liver are mucinous as well. The problem with that is the tumors will never disappear, rather the cancer cells will die while the mucinous tumors remain. Thus, the crux of treating this type of cancer. It's all well and good provided the cancer is eradicated and never returns. However, if and when it should return, it will be very tricky to treat because with out any new lessions or growth in the original tumors, there will be no way of detecting which "tumors" are active because they do not light up on the PET. Why CEA monitoring is very, very important!

Best of luck,
-Joe

Urfurf

jparker812 said:

my experience with this type of cancer
Kathleen,

I hope you both are still around and making it. As you may have found out there is not much info on this disease, as I have a type that is a mass outside of the lower large intestine and has nodules at different parts of my abdomen. I experienced a great deal of constipation the first year, but now that I have my meds right I go everyday. I take the Mirrolax every morning to stay regular. Eat well, that is the key. Use fruit blended with gensoy powder (Walmart has it) if diet is poor. try using some "urbal weed" for nausea and increase desire to eat. maintaining weight is the key to survival,along with a good mental state. I see no pattern yet, other than we have been able to keep it stable and recently it was reduced in size by the opinion to "just try something" so I went on Xeloda for 6 months and after 2 years it finally showed reduction. I am going to see Dr. Armondo Sardi and the Mercy Hospital in Baltimore. I have been rejected by other surgeons that perform the IPHC procedure along with the surgery, but he has agreed to see me. Reply back on who you have seen that is considered an expert and I'll assist you. I have done 2 years of research into the treatment and cause of this disease so I may be able to help you survive. I have been going for 2 years and counting since diagnosed, and I was sick long before I went. By the time the symptoms show up its too late. A colonoscopy would not have found it since it was outside, until it's too big to allow the scope to pass, which is how mine was found.

Need guidance urgently

Hello JParker812

 

my mother has been diagnosed with an aggressive stage 4b mutinous appendiceal cancer with signet rings.  A month prior to diagnosis, she had debunking surgery but the surgeon did not do HIPEC.  He has very treated a case of appendices ca cer before and is recommending chemo with avasti, paclitaxin and carboplatin. Weneed to consult an expert in this field urgently. we live in the Caribbean but will travel to US. Do you know who the foremost experts in the field are? 

Trubrit

Urfurf said:

Need guidance urgently

Hello JParker812

 

my mother has been diagnosed with an aggressive stage 4b mutinous appendiceal cancer with signet rings.  A month prior to diagnosis, she had debunking surgery but the surgeon did not do HIPEC.  He has very treated a case of appendices ca cer before and is recommending chemo with avasti, paclitaxin and carboplatin. Weneed to consult an expert in this field urgently. we live in the Caribbean but will travel to US. Do you know who the foremost experts in the field are? 

Welcome Urfurf

jparker812 only posted once on the forum and that was back in 2011.

Why not start a new post, and see if anyone now can help you. The link is https://csn.cancer.org/node/198098

Tru

abrub

Urfurf said:

Need guidance urgently

Hello JParker812

 

my mother has been diagnosed with an aggressive stage 4b mutinous appendiceal cancer with signet rings.  A month prior to diagnosis, she had debunking surgery but the surgeon did not do HIPEC.  He has very treated a case of appendices ca cer before and is recommending chemo with avasti, paclitaxin and carboplatin. Weneed to consult an expert in this field urgently. we live in the Caribbean but will travel to US. Do you know who the foremost experts in the field are? 

I have mucinous Adenocarcinoma of the appendix stage 4

The chemo he's recommending is not usual for appendix cancer.  We usually get the colorectal standard of Folfox.  She must get to an appendix cancer expert - she should have some kind of intraperitoneal chemo.

I'll send you a PM

Trubrit

abrub said:

I have mucinous Adenocarcinoma of the appendix stage 4

The chemo he's recommending is not usual for appendix cancer.  We usually get the colorectal standard of Folfox.  She must get to an appendix cancer expert - she should have some kind of intraperitoneal chemo.

I'll send you a PM

Hi abrub

I was hoping you would see this post.  So glad you popped in.

Tru

Annabelle41415

Awww

Remember both of them so vividly.  He was an avid surfer.  It's best to start a new post as this is really old.

Kim

Trubrit

Gone but not forgotten

Remembering Kathleen and her husband ****. angelsbaby and husband Angel, John and Herdizzyness/Winter.  

Whenever an old thread is brought back to life, I like to remember those in that thread who have passed on, yet their words continue to inspire and help. 

Tru