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mucinous adenocarcinoma of the Appendix- Stage 1V

trish07's picture
trish07
Posts: 141
Joined: Jul 2009

My husband was diagnosed -Mucinous adenocarcinoma of the Appendix in Nov. 07. His chemo is Oxaliplatin every 3 weeks and daily 4,000mgs. of Xeloda[14 on,7off]. He has completed his 5th round of Oxy. Recent CT showed no improvement. We will be going for consult on the 25th to discuss what we will try next. We already tried Avastin before starting Oxy. Husband was rushed to Emergency a couple of days later with very rare side effect! He woke up from a nap with symtoms of a stroke.He couldn't speak clearly and one side of his face was slightly droopy. I requested local hospital arrange for transfer to Stanford University Cancer Center [ where my husbands oncologist is]. The Avastin was causing the vessels in his brain to leak fluid, mimicking a stroke. Very rare, they had never seen this happen before. There were no lasting effects.

Explanation; Rare malignant growth characterized by progressive accumulation of mucus secreting tumor cells within abdomen and pelvis. Developes after a growth with the Appendix burst through wall of Appendix and spreads mucus producing tumor cells throughout the membrane that lines abdominal cavity[peritoneum]. As mucinous tumor cells accumulate, abdominal area becomes swollen and digestive function becomes impaired.

I do not know what next treatment will consist of. Their was mention of a possible clinical trial,will know on the 25th. I think we will take a holiday from chemo first.

sfmarie's picture
sfmarie
Posts: 605
Joined: Aug 2009

Trish,

My prayers go out to you and your husband. I know you are at a great center and in great care. I have HOPE there is something that can be done. I hope you two can enjoy your chemo holiday and spend it someplace relaxing and peaceful. My sister is also at Stanford and is scheduled for liver resection next Wed.

God bless,

Marie

nudgie's picture
nudgie
Posts: 1480
Joined: Sep 2006

sorry to hear that the current regime is not working, but please try and keep the faith. Let your husband know to keep fighting cause we continue to prayer for him :)

lisa42's picture
lisa42
Posts: 3663
Joined: Jul 2008

Trish,

As it was just said, please keep the faith and know that there's still more that can be done for your husband. Just because he can't take Avastin doesn't mean much- there are definitely other things he can take.
Read the other posts, if you haven't already, to see some of the other people's results here- lots of people fighting for a long time, and also lots of people getting some pretty good results. Take care!!!!

Blessings,
Lisa

bdee
Posts: 305
Joined: Feb 2009

If you find or are told something else that will help, please e-mail me because after only seven months my doctor has already told me there is nothing else to do but give me 5FU and Avastin for the next couple of years to help keep the tumors under control, but not to eliminate them.
My rare side affect came with the oxy. I couldn't eat anything solid for three months because I couldn't swallow anything but liquids. And, as you know, I couldn't do anything cold. Hot or warm Ensure was gross, so I just sipped hot tea and hot broth for about a month until the oxy was out of my system and then I could drink smoothies with protein powder to help me. I lost 65 pounds all together in those three months, but 10 of that was the mucus they removed at the time of my surgery.
I haven't been to one of the better cancer centers, but have talked to several cancer doctors at the University of Arkansas for Medical Sciences here in Little Rock and they all tell me the same thing. No cure for this kind of cancer, yet, but they all want to start me on some kind of clinical trial. My oncologist tells me the clinical trials are just that, trials, not a cure and maybe not enough to prolong my life any longer than what he is doing. Sometimes I don't know who to believe.

Good luck and please let me know anything you find out,
Debbie

trish07's picture
trish07
Posts: 141
Joined: Jul 2009

Unfortnately this is a wait and watch regimen that both you and my husband are on. I see that you were diagnosed in Jan.09 stg.1V. Husband was diagnosed Nov.07 stg.1V. Our local hospital said it would be a matter of days and that he should get his affairs in order. I immediately packed him up and took him to Stanford University Cancer Center,they saved his life!!!
He has had a ileostomy, debulking surgery { removed 7 lbs. of mucinous tumors, spleen, right hemicolectomy, sections of small intestine, e.t.c }, ileostomy reversal. Lost 60 lbs. and all his muscle mass. Did not do internal heated chemo. Unfortunately, the only clear evidence of that working is when it is caught early, which rarely is the case.
It is good that you can tolerate the 5fu with Avastin,that is the same regimen they put husband on, unfortunately he had bad reaction so that is not a option. We will be consulting with Dr. on 25th, they have also mentioned clinical trial. We of course will probably go that route if their is nothing else, but first I think we are going to take a short chemo holiday to give his body a rest.
They recently ran a test on his tumor sample and found that it is positive for the KRAS Mutation [ has your Dr. said anything about this in your case? ] That will make a difference apparently on the drug that can be used.

Like I said he was given days that turned to years and I suspect he has many more to go. So make sure between the watch and waits that you continue to do the things you love, as much as you are able. I suspect that you and my husband will be around for a long time. It sounds like you have a good Dr. who is on top of the latest treatment for this rare disease. I will let you know what information we get from the consult on the 25th.

bdee
Posts: 305
Joined: Feb 2009

Sorry I didn't answer sooner, but I had chemo on Monday and that always knocks me flat for a couple of days that I don't get on this site.

Debbie

trish07's picture
trish07
Posts: 141
Joined: Jul 2009

Thank you everyone for your post, i appreciate it. And sorry bdee for taking so long to get back to you, I don't know if I was of any help but if you have any more questions or just need to talk about it or how you are feeling on any given day, I will be here.
In loving care, Trish

bdee
Posts: 305
Joined: Feb 2009

How long of a break from chemo is your husband going to take?
My husband is taking me to London and Paris early next month. Two places I've always wanted to go and thought we would have time to go after retirement. My doctor isn't too happy about our trip, because of the Swine Flu outbreak in England. They have over 100,000 cases a day reported. I told my doctor I would wear a mask all the time unless I was eating.
I have a great husband and kids who watch out for me.
Did your doctors tell your husband he has pseudomyoma peritoneal mucous andocarcinoma? It was the first thing the doctor told us AFTER he said the tumors were benign. I had a sorry doctor for a surgeon. Believe me, I won't be going back to him for any surgeries.

Keep in touch,
Debbie

trish07's picture
trish07
Posts: 141
Joined: Jul 2009

Usually breaks are for approximately 3 months. It would be very hard to turn down a trip to London and Paris! You are probably taking a risk, I would use extreme caution since your immune system is more challenged than normal,making you more supceptable to illness.
I am concerned that your Dr. said your tumors were benign. There are both benign and cancerous mucous producing tumors. Adenocarcinoma is a cancerous tumor of the appendix. Mucinous Adenoma is a benign or low grade tumor of the appendix. Pmp is a syndrome commonly used to refer to widespread mucinous disease in the abdomen caused by either mucinous adenoma or mucinous adenocarcinoma. Also refered to as Peritoneal Mucinous Carcinomatosis.
Trish

bdee
Posts: 305
Joined: Feb 2009

The surgeon came out right after surgery telling my family that my tumor was benign. He was an idiot!!! Before 24 hours were up he was telling us I had mucinous adenocarcinoma, Stage IV colon cancer. If he had just waited until the full pathology report came back instead of announcing to my family that the tumor was benign because he had never seen anything like this mucous before.
I was on the pmps bulletin board for a while, but didn't feel the love there that I feel here.
We will be taking all kinds of precautions on our trip. Wearing masks in the airplanes and crowded places, hand sanitizer, sanitizer clothes to wipe down everything I touch and plenty of hand washing. I've been luck for the last three months my WBC count has been in the higher range of normal. I'll go back on Monday the 31st and have another blood work up before we leave on September 4.

Debbie

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