Appendix Stage IV Cancer

annaloudon

ok so I have this and I was supposed to love only 6 months. Now it is 2 years after I had surgery and I have to have the HIPEC again and I would like to find a support group for this. The procedures are new and making history and so now that 1500 surgiries are performed annual on these types of cancer a support group would be nice.

 

abrub

Don't know why I didn't see this sooner

There are several support groups on FB for Appendix Cancer and PMP.  Mine was metastatic mucinous adenocarcinoma of the appendix, and I'm 8 years out from dx.  Let me know if I can be of assistance.

 

Lyn_uk1

abrub said:

Don't know why I didn't see this sooner

There are several support groups on FB for Appendix Cancer and PMP.  Mine was metastatic mucinous adenocarcinoma of the appendix, and I'm 8 years out from dx.  Let me know if I can be of assistance.

 

Appendix Cancer

My son (35) has just been diagnosed with appendix cancer  (adenocarcinoma) and is Stage 4.  He has just started chemo and will continue for 6 months, 1xmonth with pills in between. I would be interested to hear your story.

 

Lyn

srcwoodman

Appendix Cancer

I was recently diagnosed and had surgury and heated HIPEC for a mcunis neoplasm of the appendix considered stage 4. My Surgeon was Dr. Thomas Miner in Providence R.I. He completes about 15-20 of these procedures a year. According to his office I am proceeding ahead of schedule even though I had 1 minor set back recently. I was diagnosed with the cancer on 11/6/15. I had exploratory surgury 11/9/15 then the major tumor surgery (tumor was about the size of a softball on the appendix.) and the HIPEC treatment 11/19/15. I was released from the hospital 12/03/15. The surgical team consisted of a team of  15 to 20 medical professionals. My total time in the O.R. was 6 hours.

Still waiting on pathology to make sure they "Got it all". my experience has been trying. Fatigue and lack of stamina ans strength are very apparent to me currently.

Though I am still recupperating and am in the very early stages of recovery to me it was certainly the most expedicious and complete way to attack this very rare cancer. I will say the recovery is very slow and very arduous however I was afforded the option of having my chemo delivered via a sewn in stomach slow release pak thet releases chemo on a very smal dose on a very regular basis. If anyone woul like to ask additional questions of me about this I can be reached at srcwoodman@gmail.com I promise quick responses as I am out of work until at least February and am VERY restless. I will also post any offline discussion on the forum for posteritys sake. Thanks and great recovery to all. Merry Christmas.

Mehak

abrub said:

Don't know why I didn't see this sooner

There are several support groups on FB for Appendix Cancer and PMP.  Mine was metastatic mucinous adenocarcinoma of the appendix, and I'm 8 years out from dx.  Let me know if I can be of assistance.

 

Urgent

hi

i need your help n advice urgently

my mother 52 yr 

metastatic adenocarcinoma of the appendix

now spread to small intestine n peritonium 

been 1 yr .

in 2015 it was detected right hemicolectomy was done as appendix was perforated. 

In may 2016 HIPEC was to be performed but after opening her up they said its spread on the bowel and can be resected 100% so they did not perform the surgery.

now doctors suggest chemotherapy. But they are not sure it will work or not. Please advise 

 

 

 

 

 

 

 

 

 

 

Mehak

srcwoodman said:

Appendix Cancer

I was recently diagnosed and had surgury and heated HIPEC for a mcunis neoplasm of the appendix considered stage 4. My Surgeon was Dr. Thomas Miner in Providence R.I. He completes about 15-20 of these procedures a year. According to his office I am proceeding ahead of schedule even though I had 1 minor set back recently. I was diagnosed with the cancer on 11/6/15. I had exploratory surgury 11/9/15 then the major tumor surgery (tumor was about the size of a softball on the appendix.) and the HIPEC treatment 11/19/15. I was released from the hospital 12/03/15. The surgical team consisted of a team of  15 to 20 medical professionals. My total time in the O.R. was 6 hours.

Still waiting on pathology to make sure they "Got it all". my experience has been trying. Fatigue and lack of stamina ans strength are very apparent to me currently.

Though I am still recupperating and am in the very early stages of recovery to me it was certainly the most expedicious and complete way to attack this very rare cancer. I will say the recovery is very slow and very arduous however I was afforded the option of having my chemo delivered via a sewn in stomach slow release pak thet releases chemo on a very smal dose on a very regular basis. If anyone woul like to ask additional questions of me about this I can be reached at srcwoodman@gmail.com I promise quick responses as I am out of work until at least February and am VERY restless. I will also post any offline discussion on the forum for posteritys sake. Thanks and great recovery to all. Merry Christmas.

Urgent help plz

Hi

i would want to know about the chemo that they release in small doses in the stomach 

my morher has also been diagnosed with stage 4 metastatic Muscinous adenocarcinoma of the appendix

doctors here in India are giving up. I want to explore  options 

abrub

Mehak said:

Urgent help plz

Hi

i would want to know about the chemo that they release in small doses in the stomach 

my morher has also been diagnosed with stage 4 metastatic Muscinous adenocarcinoma of the appendix

doctors here in India are giving up. I want to explore  options 

Same diagnosis as me

We've been in touch via PM.  I had the intraperitoneal chemo (not HIPEC) where chemo was given over several days.  As mentioned, I'll try to get you in touch with Memorial Sloan Kettering, or you can contact them online to see how you can send your records.

Alice

morph810

srcwoodman said:

Appendix Cancer

I was recently diagnosed and had surgury and heated HIPEC for a mcunis neoplasm of the appendix considered stage 4. My Surgeon was Dr. Thomas Miner in Providence R.I. He completes about 15-20 of these procedures a year. According to his office I am proceeding ahead of schedule even though I had 1 minor set back recently. I was diagnosed with the cancer on 11/6/15. I had exploratory surgury 11/9/15 then the major tumor surgery (tumor was about the size of a softball on the appendix.) and the HIPEC treatment 11/19/15. I was released from the hospital 12/03/15. The surgical team consisted of a team of  15 to 20 medical professionals. My total time in the O.R. was 6 hours.

Still waiting on pathology to make sure they "Got it all". my experience has been trying. Fatigue and lack of stamina ans strength are very apparent to me currently.

Though I am still recupperating and am in the very early stages of recovery to me it was certainly the most expedicious and complete way to attack this very rare cancer. I will say the recovery is very slow and very arduous however I was afforded the option of having my chemo delivered via a sewn in stomach slow release pak thet releases chemo on a very smal dose on a very regular basis. If anyone woul like to ask additional questions of me about this I can be reached at srcwoodman@gmail.com I promise quick responses as I am out of work until at least February and am VERY restless. I will also post any offline discussion on the forum for posteritys sake. Thanks and great recovery to all. Merry Christmas.

Appendix cancer

HI,  my dad who is 70 was also diagnosed with cancer of the appendix stage IV.  He did 7 rounds of chemo and then didthe HIPEC surgery which was not successful because when they went in they realized he had more cancer than expected and therefore the treatment would not have done much help and trying to take "everything" out would have taken too long and he would not be able to withstand being under for that long.  His options now are to do more chemo (aggressively like before) or just enojoy the rest of his time.  My dad is opposed to doing any more chemo becasue it was so hard on him the first time around.  I wanted to know if the chemo you mention through the stomach has the same side effects as regular chemo.  Or would it just depend on the type of "cocktial" they give you based on your type of cancer.  I feel like i've hit a wall...most people with this type of cancer are either doing chemo (which is out of the question for my dad) or doing the HIPEC (which my dad has already done).  Any info would be great.  Thank you!

abrub

morph810 said:

Appendix cancer

HI,  my dad who is 70 was also diagnosed with cancer of the appendix stage IV.  He did 7 rounds of chemo and then didthe HIPEC surgery which was not successful because when they went in they realized he had more cancer than expected and therefore the treatment would not have done much help and trying to take "everything" out would have taken too long and he would not be able to withstand being under for that long.  His options now are to do more chemo (aggressively like before) or just enojoy the rest of his time.  My dad is opposed to doing any more chemo becasue it was so hard on him the first time around.  I wanted to know if the chemo you mention through the stomach has the same side effects as regular chemo.  Or would it just depend on the type of "cocktial" they give you based on your type of cancer.  I feel like i've hit a wall...most people with this type of cancer are either doing chemo (which is out of the question for my dad) or doing the HIPEC (which my dad has already done).  Any info would be great.  Thank you!

The chemo I had in my stomach

Is similar to HIPEC. It is only effective if all visible cancer has been removed, as it only penetrates a few cells deep.  Did your father go to one of the experts?  I'm in my mid 60s and will be having a 9 hour surgery in 10 days, as I have a regrowth 9 years later. Systemic chemo is very hard.  I likely won't be doing it again as I've dieted permanent damage from the first time 9 years ago. 

My suggestion is that if your father was not working worn one of the top experts,  get him to one.  It may entail traveling.  I travel several hundred miles each way for my care because the University Medical School/center near me does not have an expert in this cancer. Good luck!

PS mine was also stage 4.

rsh37

Debulking and HIPEC

I am a 31 year old female diagnosed last August. I went through 8 rounds of chemo and am scheduled for surgery later this month. I completely trust my care team, I am at a great Cancer Center with an expert in this surgery and who knows cancer of the appendix is not colorectal cancer. I am still terrified with what is coming up. I was a runner. I ran half marathons multiple times a year and no matter what I read and what the doctors say I can't imagine what this recovery is going to be like. I've been sharing updates, that I am comfortable sharing publicly, on my formerly running blog, but I started writing something I didn't want to share so publically and decided I might as well share it here.

People keep saying they love my positive attitude. I think that's part me and part a survival mechanism.  This is a horrible, awful thing to be going through and I don't have it in me to question why me? I don't have it in me to ask about survival rates. While I'm glad to have my surgery finally scheduled I'm terrified. Of everything. It's a massive, invasive surgery. My recovery could be 6 months. I don't know what to expect. I don't know what will happen. It's all so unknown.