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Goblet Cell Appendiceal - Stage IV

Kimrosec
Posts: 5
Joined: Aug 2014

Since my husband's diagnoses of goblet cell appendix cancer (with abdominal and pelvis spread), on July 3, 2014, I've found it helpful to read about other similar cancer stories. I'd like to provide that same support to others, as well as hear more of others' experiences. This has been our experience, so far:

July 3, 2014 - admitted to hospital, through ER, due to right-lower abdominal pain. Up until he was roled into the surgery room for an appendectomy, we were told "this is textbook appendicitis." I waited 2 hours for what was supposed to be a 45-minute laparoscopy. The doctor came out and the look on her face said it all: "I'm so sorry, but your husband has cancer of the appendix." I didn't even know there was such a thing... After removing his appendix, she noticed a few nodules in his abdominal cavity which she biopsied to determine if they were also cancerous.

July 7, 2014 - CT scan done, which showed no signs of cancer.

July 9, 2014 - initial oncology appt with a UCLA specialist, who confirmed a "very rare and aggressive form of cancer," and advised that the cancer cells are likely too microscopic to appear on CT scan and therefore recommended 6 months of chemotherapy. Given the distance between our home and UCLA, the oncologist referred us to his colleague who is affiliated with UCLA aas well as a hospital closer to our home, and whose office is closer to our home.

July 10, 2014 - saw 2nd oncologist (this was actually the oncologist we were also referred to by the doctor who performed the laparoscopy). The onc confirmed "very rare aggressive form of cancer" and referred us to a specialist, Dr. Andrew Lowy, at UCSD to discuss treatment option (i.e. HIPEC surgery)

July 13, 2014 - hired macrobiotic teacher and started macrobiotic diet, to support medical process

July 17, 2014 - saw general oncologist and surgical oncologist at City of Hope, for yet another opinion. Felt pressured to schedule HIPEC with City of Hope doctors IMMEDIATELY. HIPEC was scheduled but we later cancelled, after consulting with Dr. Lowy, whom we felt more comfortable with.

July 22, 2014 - saw Dr. Lowy (loved him and his nurse, Debbie!) who confirmed, with a less scary tone, "a very rare and aggressive form of cancer." He discussed criteria and process of HIPEC, diagnostic tests, and methods for monitoring cancer response to chemo treatment (scans and blood work). Scheduled a laparoscopy to determine current extent of cancer.

July 29, 2014 - 2nd laparoscopy was performed by Dr. Lowy. Cancer was too dispersed throughout abdominal cavity  and pelvis to perform HIPEC now. Therefore, chemotherapy was recommended in hopes that cancer will shrink, making HIPEC more effective/easier to perform. Also, since my husband's CT scan and bloodwork were normal, a PET scan was ordered (Dr. Lowy is hoping the cancer will show up on the PET, that way the PET will be used to monitor my husband's response to chemo). If PET Scan is normal, a 3rd laparoscopy will be done in 4 months following start of chemo, to determine response to chemo.

August 4, 2014 - back to our general oncologist to discuss starting chemotherapy and what to expect from it.

August 12, 2014 - chemo-teaching class, where we learned about possible side effects of drugs.

August 13, 2014 (today) - PET scan scheduled for this morning

August 14, 2014 - chemotherapy (xelado and Oxaliplatin; Avastin to begin next round) to begin.

Everyday - praying for us and for you!

abrub's picture
abrub
Posts: 2174
Joined: Mar 2010

Glad you are seeing an appendix cancer specialist. Dr. Lowy has a great rep.  I know of several others who had great success with chemo shrinking their tumors prior to surgery. 

seatown's picture
seatown
Posts: 262
Joined: Sep 2012

Your journey sounds somewhat similar to what I went through 2 years ago, although yours is much more complex. I had various tests for ill-defined abdominal pain which seemed not to be taken very seriously, and not until I insisted did I get the CT scan that resulted in the phone call: "Maybe cancer." As I'm sure you know, primary peritoneal cancer, which was diagnosed within a week, is also considered rare and can be aggressive. Upon diagnosis I was immediately in chemotherapy--no chemo class, no time really to absorb what I was getting into. The good news is that the immediate chemo was effective and has kept my cancer at bay. Although I can't at this moment be considered N.E.D., I've exceeded the median survival for my cancer & consider every day a small victory.

Was interested to hear of your experience at UCSD--I lived in San Diego for over 30 years and have familiarity with some UCSD medical facilities.

Should you be interested, in an effort to dispel some of the whispers and reluctance among friends and family to discuss my health, I've been blogging about my cancer journey at 

http://www.CaringBridge.org/visit/CaroleSeaton 

Very best wishes to your husband and you.

Kimrosec
Posts: 5
Joined: Aug 2014

Thank you for your reply. Our experience at UCSD has been great - we were able to breathe easier knowing that my husband's "rare" cancer is not so rare as far as Dr. Lowy is concerned (since he primarily treats this specific type of cancer). My husband had a "severe" reaction to Xeloda 4000mg and it was therefore reduced. So, we now wonder if his reaction to Xeloda is any indication of how he might respond to Avastin, which is to be added to his regimen this week (I just left our general oncologist a message to discuss this concern). However, our vision is that the cancer is being devoured entirely by the chemo, healthy foods, exercise and laughter - all of which my husband has incorporated into his treatment. :-)

I'm sorry you did not get time to absorb your condition before being rushed into treatment. That sounds really scary but I'm also glad your doctors responded immediately, which may be in part the reason you are currently doing well. Cancer is a big deal but it can't be bigger than the Universe, God....or whatever it is you believe in. So, certainly it's curable at any stage. That's my belief.

I will certainly visit your site. Thank you!

The concern I now have is that, since my husband's cancer has only been detected via laparoscopy (no other diagnostic test has detected his cancer), it seems he'll need a laparsocopy from now on, which may end up being frequently, in order to monitor this disease, even after he's reached NED (yes, I am already claiming NED...). Anyone with this experience?

Vhs2197_'s picture
Vhs2197_
Posts: 1
Joined: Oct 2020

Your story is sounds exactly like mine.  My husband had appendix cancer 5 years ago.  They removed part of the colon, lots of lymph nodes.  All were negative at that time for spread of the cancer.  We have gone for all scans and follow ups for the last 5 years.  They did expolratory surgery October 1, 2020.  It is back, stage 4.  He is not a candidate for the surgery at this time.  He starts chemotherapy intravaneously on Monday, October 26.  I was checking to see how everything is going now.  Needless to say, we are extremely concerned.  Staying positive, but scared also.

 

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