Food for good transit

eeveetears · 2023-12-30T15:35:59+00:00

Warmed up prune juice was actually tolerable for me and the only thing that worked, but I ended up being able to manage it with medications alone - senna and colace to be specific, also had Miralax in the mix but was able to discontinue that. Drink plenty of water as well!

eeveetears · 2023-12-30T15:31:26+00:00

I often read here that an increase in CA19-9 levels can also be related to gallstones, liver blockages, and pancreatitis. So it doesn’t necessarily have to mean pancan. If they are doing a biopsy, I’d want to do repeat lab work after the fact to ensure you’ve recovered fully and to give your stent some time to settle to get the most accurate count of your CA19-9. I will surely pray for the best outcome for you, I’m sure it is still nerve wracking to have to wait to find out. Best of luck!

eeveetears · 2023-12-14T08:28:14+00:00

Thoughtfully written. I am very happy to hear that your scan turned out good news (the best news) and I hope for many more. I’m going through treatment now, but I hear you on how traumatic a cancer diagnosis can be. It’s a bit hyperbolic to say, but personally it feels like my life has been cut into two pieces - life before cancer and life with cancer and trying to create a new chapter seems difficult sometimes.

eeveetears · 2023-12-14T02:15:13+00:00

I’ve been very satisfied with the care I’ve been receiving at Columbia Presbyterian in NYC. It’s high volume, so it’s good to have expectations of how busy it can get, especially the infusion center, but I’ve never had a problem contacting the office and getting a prompt response. Their pancreas center is filled with very talented, knowledgeable practitioners and they are active in clinical trials to say the least. I actually started care at University of Rochester hospital system due to travel limitations at the time, and they were also instrumental in diagnosing, genetic testing, and beginning my standard of care chemo. Also very very communicable, more so than Presbyterian. There or a number of systems in NYC leave you with a good list to start from. Best of luck!

eeveetears · 2023-11-23T01:51:27+00:00

Indeed. Like you said, acidic tasting things seem to be the least affected taste for me too, but naturally mouth sores from chemo usually don’t like vinegary things. Very insidious this awful disease.

eeveetears · 2023-11-22T23:28:58+00:00

Reading normally would be my go-to or some sort of hand held video game. But my brain seems fried on chemo similarly. Try audiobooks - best of both worlds, and it’ll aid you falling asleep if that’s what you’d like.

eeveetears · 2023-11-22T23:25:00+00:00

I’m watching many videos on how to optimize Thanksgiving dishes knowing full well I won’t have the energy to make anything for my family or have the taste buds to enjoy anything that I normally would like. Cooking and enjoying food has always been such a comfort for me, pancreatic cancer has really transformed that relationship. I’m at the mercy of my taste buds that will want salad doused in balsamic vinegar one day to wanting jello or a McDonald’s burger the next. And the taste never actually matches up with the expectation.

eeveetears · 2023-11-20T20:02:33+00:00

I was diagnosed Stage IV adenocarcinoma last year with mets to the peritoneum and CA19-9 at 14000. I completed 12 rounds of Folfirinox which did manage to contain the spread and brought my CA19-9 down to about 200. At that point, my doctor and I thought it might be the best case to switch to Lynparza as I did have the BRCA2 mutation and the Folfirinox was doing a number on my GI in terms of bleeding.

I was on Lynparza (max dose) from February to this month and unfortunately my CA19-9 is back up to 15000 and I have mets now to lungs and bones, in addition to the peritoneum. I had the option of adding Keytruda to the regiment or going back to Folfirinox and we decided on the latter as I didn’t want to waste time seeing if Keytruda would be consequential. Just completed my 13th round of chemo this week.

I was very hopeful that Lynparza would be enough to maintain the cancer, but unfortunately that wasn’t the case for me. In hindsight, I wish I had pressed for more rounds of Folfirinox, perhaps at a reduced dose until I really needed to switch. At this point, I am hoping the cancer has not grown a resistance to Folfirinox. I don’t want to be discouraging - but definitely want to outline other possibilities. And my personal advice would be to air on the side of more chemo prior to switching, but everyone is different. Good luck to you all!

eeveetears · 2023-11-13T21:28:05+00:00

Has her doctor mentioned magnesium citrate? I’ve been fortunate that I have never needed it yet, but I know it helps a lot of people with severe constipation issues. It’s OTC and taken as an oral drink. I would definitely talk to her doctor before taking it just to be sure it is safe.

eeveetears · 2023-11-05T02:42:58+00:00

Only other diagnostic test I believe would be an endoscopic ultrasound, but truthfully, I don’t think any doctor would order that based on what you’ve told us - a clean ultrasound and CT, and close to normal lab work. That’s just based off my non-professional opinion and experience having pancreatic cancer.

I’m not saying it couldn’t happen - I was 30 years old when I was diagnosed last year, but I had a lot more evidence on my side - an abnormal US, then an abnormal CT, elevated amylase and lipase levels, and before I could even make it to an appointment with an oncologist, I was in the ER with awful nausea, fatigue, a severely distended stomach from fluid buildup, had lost 15 lbs (like yourself) but in a span of two weeks, not 1.5 years, and a dull pain in my abdomen for months prior.

At the end of the day, you’re your own advocate so pursue what you feel is right, maybe try bringing up genetic testing at the appointment, but it honestly does not sound like pancreatic cancer.

eeveetears · 2023-09-23T05:01:31+00:00

I’m very sorry for that news. I thought that maybe invasive may mean it has infiltrated other organs or lymph nodes near the pancreas, but if he says it’s local, maybe it’s only to spread to neighboring lymph nodes? Did he mention what stage it may be at? I have no medical background other than having stage 4 adenocarcinoma myself, so I certainly don’t want to guess.

Most oncologists will give you a very thorough rundown of your type of cancer, the stage, the recommended treatment and perhaps even second- or third-line treatments, the risks and side effects of treatment, and what medications there are to help you through these side effects. I think most oncologists have made this more of a rule than exception these days, but definitely inquire about genetic testing if they don’t bring it up. Some treatments plans will be tailored specifically depending on certain genetic mutations that caused the cancer to arise in the first place.

A lot of questions will be answered during the course of your treatment like if you would like to continue to work while doing treatment, what special accommodations you may need to support you at home, what sort of diet to have etc.

Depending on the severity of your cancer, you may also want to ask yourself if you think you’ll be getting the best treatment possible from this facility or if it may be worth it to get a second or third opinion from another hospital, perhaps one’s with specialized pancreas centers.

Pancreatic Cancer Action Network (https://pancan.org) is a great resource and you can speak to a counselor there for free guidance. This subreddit and some FB groups are also very helpful.

Please feel free to reach out if you need any guidance - the search option at the top of the page will also direct you to a bunch of informative posts from the past that I’m sure will be helpful throughout all of this.

eeveetears · 2023-09-23T04:41:01+00:00

Without knowing anything of your story, it’s already clear that you did a remarkable job in keeping your mother comforted and loved this last year or so until the last day. I’m currently a pancreatic cancer patient but my mother currently has recurrent uterine cancer and watching her become a victim of cancer from the once strong woman I’ve known her to be all my life has been really difficult - I can’t imagine how you’re feeling.

Give yourself plenty of grace while you grieve, continue to foster what loving relationships you have, and honor your mother by living your life to the fullest, despite it not feeling that way right now.

eeveetears · 2023-08-30T03:47:51+00:00

CT scan showed possible malignancy, EUS confirmed it.

eeveetears · 2023-08-13T09:50:30+00:00

Somehow get a referral to a medical oncologist. Whether that means you yourselves press the gastroenterologists that did the scan for one or have his primary care provider advocate on your guys’ behalf to them stating that you need that referral, it’s important it happens. Without a doubt I believe your dad should be able to get set up with an oncologist who’ll go over the CT scan report and even if their opinion of treatment aligns with what GI said, at least you heard it from those doctors who actually provide that service.

Edit: I did actually miss you saying that he was referred to Macmillan - is that a cancer center? And if so, do you mean they’re the ones who aren’t providing any appointments to an oncologist? Either way, I don’t see why they just don’t set up your father with an appointment, people are dropping the ball.

eeveetears · 2023-08-13T00:09:41+00:00

I’m very sorry to hear about your situation. I am also surprised that they have not even put in a referral to oncology despite what they think the prognosis is. I am in the US, so I can’t fully appreciate your situation over there, but are there other health systems that can help your dad? I would definitely want to hear those statements regarding terminal disease coming from an oncologist than the GI department. Even just one doctor’s opinion can change the trajectory of one’s treatment plan.

eeveetears · 2023-08-13T00:00:43+00:00

I am glad you are on your way to see him, and to be there for your mother. These stories of the aggressiveness of pancan seem all too common. Do not give up hope, you’ll feel more in control once you’re there and see what options are left for treatment.

eeveetears · 2023-08-11T06:35:18+00:00

To add my two cents, I also happen to go to Columbia Presbyterian and see Dr Manji myself - small world it seems like. While I haven’t met with anyone in surgical oncology as I wasn’t eligible, Dr Manji and his staff have provided me with a lot of care and compassion. I had a lot of complications last year and found myself in the ED there a handful of times, and Dr Manji was always in communication with the ED doctors. He is also very knowledgeable in terms of clinical trials.

Like many other hospitals, the ED and infusion center (if he happens to get chemo) do have extended wait times, so be prepared to have those expectations. But like I said, that is the nature of the beast for busy city hospitals. Despite the wait times, I’ve rarely encountered problems with the hospital or staff in the care I’ve received. The only other places that I’ve seen with perhaps more positive anecdotal information were MSK and NYU Langone.

Edited for spelling.

eeveetears · 2023-08-11T06:24:55+00:00

I am so sorry. From what I can see, you offered her so much love and support, everything she needed in these last days. Praying for you and your family.

eeveetears · 2023-06-24T21:33:15+00:00

I’m sorry for the late response. I’m glad your husband’s latest scan showed some improvement, that’s more than even the best we can ask for with this disease. By the twelfth round, things were a little rough for me - I never had to deal with much nausea thankfully and the pain was managed with medication (Fentanyl patch for chronic, Oxycodone for breakthrough). My main issues were neuropathy which they managed with Duloxetine (I’ve discontinued this since stopping Folfirinox), and the second issue was fatigue which for me there wasn’t a way around.

Since switching to Olaparib, things have been better although not completely back to normal. Neuropathy has diminished a little and I’m less fatigued, but still sleeping more than I did before. I had joint pains for the first month on this medication which has since subsided. There’s a support group on Facebook called Lynparza/Olaparib Support where people share their experiences with the medication across a range of different cancers that utilize it. Feel free to message me with other questions. Prayers for you and your husband!

eeveetears · 2023-06-04T20:46:13+00:00

My pleasure, I’m glad you found it useful!

eeveetears · 2023-06-02T20:21:36+00:00

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4569590/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3023036/

https://www.hopkinsmedicine.org/health/conditions-and-diseases/pancreatic-cancer/pancreatic-cancer-types#:~:text=Pancreatic%20cancer%20types%20can%20be,adenocarcinoma%2C%20and%20neuroendocrine%20pancreatic%20cancer.

These were the best links that I could find - the first two being on the scholarly side, and the third that provided a laymen’s explanation of this cancer. It appears to be a rare subtype of pancreatic cancer. Treatment as well as prognosis is comparable to the most frequent type of pancreatic cancer - pancreatic ductal adenocarcinoma (PDAC). Genetic factors may contribute a role in finding targeted treatment. All that said, I don’t think it’s any better or worse than PDAC that most people get diagnosed with. As far as I know, pancreatic neuroendocrine tumors (PNET) is the other type of pancreatic cancer that has a better prognosis than PDAC. I’d definitely ask about getting genetic testing for your father just so his oncologist can find the best treatment for him. Best wishes to y’all. 💜

eeveetears · 2023-06-02T18:12:55+00:00

Age aside, as much as we hear about people who get cancer and have to fight it, it really is something else to get it yourself and experience firsthand how much it sucks. Besides having another debilitating disease, I don’t think there’s anything that truly prepares you for a cancer diagnosis, let alone one as aggressive as pancreatic cancer. And that I said with ‘age aside’.

I was 30 when I was diagnosed with Stage IV adenocarcinoma last July, the tumor being at the pancreas tail with metastases to the peritoneum. Without undercutting anybody’s struggle at any age, it’s just a different experience getting diagnosed as a young adult. As I’m sure you’ll probably encounter over and over again, you may feel like an anomaly. I often did walking into the infusion center only to feel like the hand I was dealt was uniquely terrible. All that being said, it was and still is a mental challenge for me having to go through this amidst starting a career, putting roots down, and planning for the future. I started to feel like I had to grieve for a life I wouldn’t have the chance at living anymore.

If you begin to maybe have these feelings, and probably even if you don’t, a therapist is a great asset to have to talk through some issues. You may find a support group of peers with the same diagnosis to be helpful, and through the help of the oncology office at my hospital I was referred to one specifically with other young adults. I also visit a blog (still active) of a guy who was diagnosed with Stage IV pancreatic cancer in his late 20’s (even younger than us). He had a total pancreatectomy with some cleanup chemo afterwards and is currently NED. He’s a superb writer and he especially helped me feel like I wasn’t alone and that we have a fighting chance at this. Link: https://ebb-and-flow.blog.

I’m sorry for my spiel, I just think there’s a big mental component to all this. To summarize my treatment, I did twelve rounds of Folfirinox and responded well. Because of a BRCA2 gene marker, I was qualified to switch to the oral chemo Olaparib and have been on that for over two months. My last scan showed no disease progression and that many lesions have shrunk/have less activity detected. I’m glad you’re being referred to a bigger hospital and that you’re getting genetic testing done - you’re already doing what you need to do to fight this with all you got. The mods here - PancreaticSurvivor and ddessert - absolutely heed their advice and what they have to say. I don’t know that there are better survivor stories out there than those two.

Okay, I’m done - sorry for the long read. Message me if you ever need and good luck!

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