My Mothers Diagnosis

Dmc20

Hello everyone, I am new here and I am fortunate to have found this website. My post is regarding my mother. A little backstory on how she got her diagnosis in 2020 right before the pandemic she started getting really bad stomach pains. Know if anyone knows my mother, she does not complain about pain one bit. She has never taken off of work in 50 years. Took her to a hospital here in Illinois. They said it looks like a ruptured appendix and they need to drain it before they do surgery. They go to put the drain in. They leave it in for about a week only drained very little and the doctor was like well that’s kind of odd. Let’s try it again so they put the drain in again same thing happens they do it a third time and when they do with the third time the doctors as well this is pretty rare that we have to do it twice and then a third time so we’re just gonna go ahead and do surgery. They remove the appendix and they found a tumor inside the appendix, so I’m assuming that the tumor got so big that it ruptured the appendix. The night before I had my son I get a phone call saying that my mother has cancer. And not just any cancer a rare appendiceal adenocarcinoma. So when we went back to that same doctor, he basically told us he’s never seen that before so what I did was I took my mothers file and went to get a second opinion at a different hospital in Chicago. We met with a wonderful doctor and she said well it looks like we do not see cancer after the surgery so we’re going to do a preventative chemo and that was FOLFOX( I hope I spelled it right because right now currently she is on FOLFIRI). She did very well on it. Rare Lee she had any severe symptoms she had some hair thinning may be a little nauseous, and I think the worst part of that one was the neuropathy, but overall seemed fine. Fast forward about 2 1/2 years later this past January, they kept seeing fluid around the area where the appendix was so they just kept watching it. They did a pet scan also did not light up with cancer so we were pleased. , Beginning of May they see the fluids a little bit more so the doctors like well let’s just do a biopsy to be sure do the biopsy week later we get results cancer is back. It bothers me that the scans cannot detect all cancers. As of today she has done six rounds of her recent chemo and as of yesterday she had a scan and we are currently waiting the results of that scan. We should know by today because she sees the doctor today. Also has chemo today. My question is I know it is a rare cancer but I have noticed some people saying they are diagnosed with it here. If you can please give me some insight if there is any other treatments just in case her current regimen isn’t working. Thank you so much. God bless you all.

Trubrit

I'm not too sure how rare Appendix Cancer is, as I have known several people who have had it; but that may be because I am on a Cancer forum.

It sounds like you mum has been on quite the journey, and I am so sorry that she had to go through so much before being officially diagnosed.

Did they say where this new Cancer is? Is it a metastasis of the old Cancer or a secondary Cancer. With the appendix being removed, it cannot be in there, anymore, so where is it. I would want specifics.

I do hope this treatment works for her. If it doesn't then you would need to look into trials. There are others on the forum who know more about that, than I do.

I wish your mum, all the best.

Tru

Dmc20

https://csn.cancer.org/discussion/comment/1708977#Comment_1708977

Hi Trubrit, thank you for your kind words. The fluid that ruptured from the appendix is basically the cancer cells, so they in bedded in the right lower quadrant and into the bowel. So it’s basically from the previous cancer.. we got her skin back. It only grew a tad bit in size the fluid. We are going to talk with the surgeon this coming Wednesday to see if she is a good candidate for what they want to do which is to inject chemo directly in the lower quadrant where the fluid is located. I do trust the hospital that we go to. It’s very reputable for cancer treatment in Chicago. I know the doctor mentioned that when it does increase in size and then goes back down in size, so basically fluctuates the cancerous fluid. But the chemo is so intense this time around my mothers having really bad mouth pain and I’ve been googling how to help her with that because she can’t even talk because it’s so painful.

Trubrit

I believe the treatment they are planning for you mother, is called HIPEC . We have had several members on the forum, who have had this done. It is rather extreme, but there has been success.

As for the mouth pain, is it ulcers/sores? I had awful mouth sores with my treatment, and the only thing that worked for me was a mouth wash made up of Water, baking soda and salt. I think the ratio is four cups warm water, 1 teaspoon baking soda and 1 teaspoon salt. Swoosh it around for a few minutes and spit it out.

This can be done, even when the mouth sores are not present, just to protect the lining of the mouth.

I am pleased to hear that your are all happy with hospital and team, treating your mum. That really, really helps.

Back to the mouth pain, I am remembering some of the forum members mentioning something called Magic Mouthwash. I think it is a combination of different medications that work to relieve mouth sores. Have your mum ask her Oncologist about it, as I think it may be an RX.

Tru

Dmc20

https://csn.cancer.org/discussion/comment/1708992#Comment_1708992

Thank you so much! I’ll have her speak to someone about her mouth pain and also do that remedy. HIPEC is when they directly and chemo to the fluid? We go Wednesday to see if it’s possible to be done for her. I’m looking at the scan notes now and the fluid did get a tad bit bigger in size nothing much. I just wonder why they can’t put a drain in that area to drain the fluid, then inject the chemo where that fluid was? I keep getting my brain and doing all these different researches to try to see what’s the best to control this cancer. They basically say the cancer is from the first diagnosed cancer from a few years back and now they are calling it small bowel cancer. I really appreciate all your help. Just trying to stay positive and get through this with her.

Trubrit

HIPEC - Hyperthermic (Heated) Intraperitoneal Chemotherapy. Where they pour chemo directly into the abdomen, so yes, I do believe this is what she will be having, but don't quote me.

Tru

Dmc20

https://csn.cancer.org/discussion/comment/1708999#Comment_1708999

That’s pretty much basically what they told us that they would be injecting it into her stomach. I don’t know much about this procedure. I don’t know how effective it is I’d have to search more on here to see how many people have had that done and what the success rate is. Thank you so much for all your information. I really truly appreciate it. We all fight together.

Trubrit

https://csn.cancer.org/discussion/comment/1709003#Comment_1709003

Definitely ask about it, because from what I've heard, at least from other patients I've heard from, it is an open incision, surgery. Now, things change all of the time, advancements are made, so hopefully injecting it in is all they do, as open surgery is obviously allot more recovery time.

I put HIPEC in the search, and this is what came up - https://csn.cancer.org/search?domain=all_content&query=HIPEC&scope=site&source=community - Best information comes from those who have gone through it, and much better than my second-hand knowledge.

Some of the posts are old, so check the dates. But you may find it helpful.

Your mother is blessed with a loving daughter/son (not sure which one you are 😊). Love can carry a patient a very, very long way, on this journey.

Tru

Dmc20

https://csn.cancer.org/discussion/comment/1709004#Comment_1709004

Oh thank you thank you so very much Tru!! I will look into this! I am her daughter and I am the luckiest girl to have such a wonderful mother❤️ God bless you and thank you again!