sangram
Forum Replies Created
-
Posts
-
He passed away at 12:28pm local time, after complications following paracentesis procedure at home. He suffered a heart attack on Friday morning and kept slipping in and out of coma. He breathed his last today, closing a long sad chapter in his life.
Now we look forward to the future. Our family of three is down to two, and counting.
Good Night.
Hi again,
Thought I’d post an update on our story.
In the initial weeks after diagnosis we decided against any form of aggressive treatment for my father. We decided instead to control his diet to limit the amount of drugs he was taking before diagnosis, restricting medicine use to only those needed to treat infections. Since we had to eliminate blood sugar and blood pressure medication, we eliminated sugars from the diet (except that obtained from fruit) and limited the consumption of sodium. The diet was focused on protein and vitamins/minerals, with minimal starches. This meant a switch from a rice-based diet to quinoa, lots of fresh fruit and vegetables, and a generous dose of oats, nuts, seeds and some selected superfoods.
Correction to the diet resulted in reduction of blood sugar and blood pressures to normal range (120-140 glucose and 140/80 average BP), something we hadn’t seen in 20 years. We were dealing with a couple of local infections due to the stent placement (which was critical as his bilirubin levels were life-threatening), and a urinary infection due to the hospital stay and catheter placement. These took about six weeks to resolve and the UTI is not yet fully resolved.
We were advised against resection due to advanced age and multiple complications – the anesthesia risk was very high. Our doctors also told us about the poor chemo response of his tumor, and the chemo shock may also have been quite bad for him. As a result we continued to care for him with a controlled diet, a bit of exercise (that he was able to do) and bed rest. So has been our story till he contracted a serious GI infection at home (post a single dose of CBD oil), and a subsequent hospital stay and post-discharge scans have revealed that there is a possibility of metastasis in the liver and some secondary growth in the intrahepatic duct.
We are sending out for AFP+CA19.9 results tomorrow to confirm these diagnoses. We always knew this was going to happen at some point because we were not trying to really attack the disease. Since he is bedridden and cannot function without a carer, his will to live has been sapping away for a few months now. He outlived the doctor’s prediction by two months, but it seems we’re now in the final few weeks of his ordeal.
I really don’t know why I’m writing this. May be just wanted someone else to know.
Thanks Mary for the warm welcome!
I did speak to two oncologists overnight and early this morning, with five decades of collective experience. Both of them were in agreement viz. regardless of the state/stage of the cancer, we would have to treat the jaundice first without which no meaningful discussion could even begin. If that required the placement of a stent then that had to be done anyway – or the patient would not survive the levels of jaundice we were seeing.
So we went ahead with the stenting procedure this am, and Dad recovered well, conscious, lucid and crabby within an hour of exiting the OT/OR – it was wonderful to see him back! He ordered me to not visit him tomorrow morning and get us both some rest instead. The results for the tissue biopsy should be available by Monday morning and we can then plan our lives, breaking news to him is what I’ll have to worry about next. The GI surgeon who conducted the stenting procedure has apparently seen many similar cases in similar age groups, and opined that this kind of cancer is tough to treat but we could still try. He scraped off a bit of tissue for the biopsy but left the overall mass in place.
The relatively good news is that the mass was not perihiliar but located inside the CBD, which is probably why the duct was significantly dilated at the pancreas end. Once we have an initial report on size, location and nature of the tumor we will book appointments with a cancer center and explore treatment options. I suppose further investigation will be required for exact location, as the MRCP was a bit misleading.
We should have him back home by Wednesday at the outside depending on the LFT results after tomorrow. Then we look ahead to the next phase.
Thanks for listening!
Hello Kasia
I am sorry to hear of your condition too, and hope and pray for your recovery.
Hello positivity
Thank you so much for that post, this is exactly my situation except that the ERCP has not yet been performed – and the BR count is quite high in my case. However I am happy to hear that the treatment is ongoing, and hope for the best for your mother.
————————————————
Over the sleepless night, the view to withdraw him and refer him to an oncologist in a cancer research unit has crystallised and that is what we have decided to do, now the tough bit is to break the news and extricate him from the hospital with as little pain as possible. My father is a war veteran, but it’s been a while since he’s faced such bad news so I’m not sure how he will take it.
Then we (hopefully) begin the slog of actual cancer treatment.
Thanks for chiming in 🙂
