"I am writing this for my 72-year-old mother, who tragically died on Tuesday 01/17/2018. She was a long time viewer of these forums, and recently started posting. I hope that this story and the tips below it will help some of you. Even if it benefits one person, it will be worth it. She made this account, and now I am using it to spread her story and help whoever I can, in her name.
"She had a single breast tumor for approximately 20 years. She didn't seek treatment, as it didn't grow or change shape. Finally in 2014, it began to grow, so she sought treatment and was diagnosed with stage II breast cancer. She started taking Faslodex and watched her markers go down, as well as the tumor size decrease. She modified her diet and tried a more vegan approach, as well as also tried CKD (Cyclical Ketosis Diet). She always exercised, did yoga, and was very spiritual. She started to intermittently discontinue the Faslodex due to joint issues that the drug was causing. The doctors said it would be OK to cycle the drug off and just keep an eye on the markers.
"In January of 2017, she began to complain of stomach pain in the appendix region. After 2-3 days of increasingly worse pain, I took her to the emergency room. Five days later, they did laproscopic surgery on her to discover that her appendix was obliterated and had sprayed mucus all over her peritoneum. The surgeon cleaned it out and sent the mucus to pathology, where it was determined to not contain cancer cells (according to the test). The doctor did not advise of any abnormalities within the peritoneum and suspected acute appendicitis. She was prescribed several antibiotics for 10-14 days, to which she completed without incident. She also was taken off Faslodex completely for approximately 1-2 months during the appendix issues. After all this transpired, the tumor rapidly began to grow and change shape, coming close to breaching the skin.
"In early 2017, she consulted a surgeon regarding these complications. The surgeon advised that it would be best to remove the tumor and get chemo/radiation immediately afterwards to prevent the spread of the disease. My mother, always skeptical of the traditional allopathic method for treating cancer, agreed to the surgery, but refused the chemo/radiation. The surgeon first advised that they had clean margins and that the tumor was gone with no indication of it spreading. The doctor later advised her that a small piece of the tumor apparently got stuck on the muscle, snapped back, and thus, the margins weren't clear after all. Approximately 4 months later, in August, she discovered the start of small tumoring on the skin where the previous tumor was removed. Worried that the cancer was back, she contacted the oncologist who now diagnosed her with stage IV cancer, very slightly HER2+, and recommended Taxol/Herceptin/Perjeta. She reluctantly decided to get the chemo, which she did. She was prescribed Omeprazole and OTC antacids to take with the chemo, as well as Benadryl. In addition, during the chemo, she was administered cold caps and had cold packs on her hands and feet to prevent neuropathy. The cold caps worked beautifully, no hair loss whatsoever, and the ice packs prevented peripheral neuropathy. It should be noted that sometime during late 2016 (when her appendix was obliterated) throughout 2017, she developed ascites of the abdomen, which progressively got worse.
"Six rounds of Taxol later, she started to feel better and the tumoring was disappearing. After the Taxol was complete, she was to continue Herceptin and Perjeta for approximately one year. Approximately 2-3 weeks after the last round of Taxol, she went on a vacation to celebrate her feeling better. She stayed at a beach hotel with her friend and contracted flu like symptoms on her way back. She suspected foreign travelers had been sick at the hotel, and thought it was just a flu. The flu manifested itself into suspected pneumonia, with one of her lungs completed filled with fluid. She got a chest X-ray and they found that her pleural lining was filled with fluid and that the one lung wasn't functioning. She got a thoracentesis and immediately felt better, with the 1.25 liters of fluid being sent out to pathology. The pathology came back positive for cancer in the pleural fluid of one lung. She then asked the doctor if she had to continue the Omeprazole, to which the doctor said she could discontinue it and use antacids as necessary. She discontinued the Omeprazole and Zofran and within a week began developing harsh gastritis symptoms (stomach gurgling, reflux, nausea, bloating, etc.) She also noticed the ascites of the abdomen getting a little worse and making her look about 4-5 months pregnant. She contacted the doctor, who always takes forever to reply (usually at least a week from the time of the call to get an appointment). The doctor recommended she restart Omeprazole, to which she did, with no improvement. The doctor said that the Herceptin and Perjeta should help with the tumoring and that the markers didn't appear to be further elevated. The doctor offered no insight regarding the ascites.
"In November, her symptoms became dramatically worse. Her gastro symptoms became exacerbated, with discomfort, nausea, early satiety, gurgling/reflux, etc. appearing constantly. She began sleeping worse and worse, having diarrhea, and occasional vomiting. By Christmas Day, 2017, she was hospitalized for extensive gastroparesis. Literally a sip of water would cause her to vomit. The hospital gave her IV Zofran and Famotidine, which seemed to help. She ate on Christmas night without any vomiting. The next day, the vomiting returned and she was hospitalized on December 27th. Numerous doctors couldn't figure out what was wrong with her and guessed that it was acid from the chemo. Again, antacids were prescribed with Zofran, but nothing for the inability to physically eat and hold food down. From December 27th through January 2nd, she was unable to eat anything. Her oncologist offered no insight and was nowhere to be found for 2 weeks straight. Her P.A. and other doctors said, 'go to the hospital.' She received a paracentesis and thoracentesis, removing 1.65 liters of ascites from her abdomen and 1.25 liters from her pleura. Both were sent to pathology and the abdominal ascites came back positive for cancer.
"Ultimately, I found a boutique oncologist (i.e.: cash only), that caters to their patients and offers every type of therapy imaginable. This particular doctor is highly skilled and world renowned for extreme cases. He took her immediately, looked over her case, and requested that she go to a surgeon to have a drain tube put her in stomach, pleura, and abdomen to temporarily alleviate the issues. The drain tube in her stomach drained the contents of the stomach and relieved much of the pain and pressure she felt from food sitting there and not digesting. The pleural drain removed the fluid from behind her lung and improved her breathing somewhat. The peritoneal drain made it easier to drain the ascites as necessary to relieve pressure. While the surgeon was there, he biopsied her lymph nodes and laproscopically looked inside of her peritoneum. He immediately observed thorough tumoring throughout her abdomen, with tumoring on one of her lungs as well. He observed a Sister Mary Joseph nodule and took a biopsy therein. The surgeon advised me that she had a very advanced case of peritoneal carcinomatosis, and that she had 1-3 months to live. The samples of her pleural fluid and ascites were sent to Weisenthal Cancer in California, where they were analyzed against all known chemo drugs to find the correct combo to fight her cancer. The tests, which cost $8,800 for each sample, were extremely thorough and take about a week to process. Sister Mary Joseph noduleMy mother, always the optimistic fighter that lived an extremely healthy and spiritual lifestyle, did not give up. After her hospital stay, where she was ultimately prescribed Reglan for her gastroparesis, she met with the new oncologist again. He advised that only a few very extreme therapies existed to deal with her complicated diagnosis, including HIPEC (Hyperthermic intraperitoneal chemotherapy), cytoreductive surgery, and/or Whole Body Hyperthermia + Chemo + Radiation. The oncologist said that the prognosis of 1-3 months was wrong and that instead she had a chance at several years or full remission depending on how she responded to the new treatments. After that day, she became extremely malnourished from not being able to hold food down, so the oncologist ordered a port be installed to give her TPN (total parental nutrition). She got the port installed and began TPN. The TPN immediately gave her horrible diarrhea and she became dehydrated and hypokalemic (low potassium). Back to the hospital again, this time on 01/11/2018. The report from Weisenthal came back and it was found that Taxol had very little effectiveness against the disease, however, it was found that high dose tamoxifen + Doxorubicin + Vinorelbine had an extremely high toxicity towards the cancer. The oncologist ordered the drugs and was going to begin low-dose chemo the moment she got out of the hospital. The treatment would include low-dose chemo for 8-12 weeks to reduce the cancer, then ultimately HIPEC/Cytoreductive surgery/Radiation and/or whole body hyperthermia, followed up by Zejula or other maintenance drugs afterwards. He then removed the chest tube, as it was causing bronchial spasms and removing very little fluid. After the tube was out, she felt better.
"In the hospital, the nephrologist ordered that she receive complete TPN (reworked for her) and plenty of IV potassium. Her potassium levels began to increase well and her CO2 levels began to drop (both good for her). By 01/16/2018, her potassium levels were back to normal. The TPN started to work and arrested the atrophy and made her feel a little better. The whole time she was alert and ambulatory, as she would walk around the hospital without issue. She was recommended by the gastroenterologist to get an endoscopy to find out more regarding the gastroparesis. On 01/16/2018, her potassium and CO2 levels had normalized and she was due to be discharged on 01/17/2018 to begin the new chemo. She had the endoscopy first thing in the morning, around 07:30AM. The GI doctor did a biopsy of her esophagus, but did not see any tumoring. Instead, he saw some candida and prescribed her two antifungal liquid medications. After the procedure, she developed an esophageal bleed, which seemed to get worse throughout the day. She was vomiting blood and had blood coming out of the stomach tube, both at the site and into the collection bag. The nurses contacted the GI doctor, several times, to which he said that it was normal and to just 'watch it.' Again the charge nurse called a few hours later asking for surgical intervention to which the doctor refused and said that the bleeding was normal. As the day went on, she became agitated, fearful, panicked, and said she felt like she was dying. Her blood pressure gradually dropped as her heart rate increased. By 1AM, her blood pressure was 50/30 and the nurses scrambled to get her a transfusion. By 3AM, she got a 300ml transfusion and started to feel better. She continued to vomit black substance, likely dry blood, and her breathing progressively got more rapid and shallow. She started spitting out foamy substance and the nurses said this was normal for low blood volume and low red count. By 6am the transfusion was complete and she thought she was a bit better. By 7AM, she could only take 'sips' of air, rapidly breathing and panicked. I ran and got the nurses, who sounded the alarm. She coded about 20 seconds later. They worked on her for 15 minutes to no avail. The doctor said, 'her lungs were filled with blood, there was nothing we could do.'
"The irony is that despite having aggressive stage IV cancer with a poor prognosis, my mother died from complications sustained from a 5 minute routine outpatient endoscopy. A horrifying end to her saga, and some serious PTSD for me.
"That being said, I wanted to share some tips/advice to anyone else going through cancer treatment, from what I've learned, and hopefully her death will not be in vain.
- "When you get your first diagnosis, go straight to the top if you can, i.e.: MD Anderson, Moffit, Sloan Kettering, etc. Try not to dabble with local doctors and as long as you can afford it and/or if your insurance is good for it, get the absolute best from the start. This will eliminate a LOT of headaches and heartache later.
- "When the doctor recommends specific treatment(s), do your research first, lots of it. When you feel that you agree, go forward with it, but it always helps to get a second or third opinion in person.
- "As soon as possible, use Weisenthal Cancer and get your samples out to them. They provide an overnight shipping label and specimen container with reagent. Make sure to follow the directions and get it to them ASAP. Within a week you will have your results. I cannot stress this step enough, as it will save you a LOT of grief in getting potentially the wrong chemo drugs that can do more harm than good.
- "Look into low-dose chemo treatments as options for more aggressive cancers.
- "Cold caps work for saving hair! You will need an entourage to administer them properly, or a facility that has them in house, but it's worth every penny.
- :Ice packs on hands/feet during chemo helps eliminate much neuropathy later, so use them!
- "Fatten yourself up as much as possible prior to chemo. In the unfortunate event that you have gastro symptoms, you will have plenty of excess body mass to burn, giving you additional time before becoming severely malnourished.
- "Get the cancer treatment and get the disease under control first before any exploratory and/or elective procedures.
- "When getting procedures done, make sure the doctor knows your diagnosis and/or any complications your disease may have. Remember, you can always say no. Look online and see if you can research the procedure for someone with a similar diagnosis and make sure you know what you're getting into.
- "Use your support ground and have as many people help you as possible to do research, be with you, talk to you, and give you their positive energy.
- "If you know you have something going on, i.e.: a tumor, DO NOT WAIT. Get the tests, get the diagnosis, and refer back to step #1.
"I wish you all, and your families, the best of luck. I wish that all of you beat this disease and are able to share your stories later with others. My mother would have wanted all of you to survive and live well, and I know that she would have willingly sacrificed herself if she knew it would help someone else. I hope that her experiences can help some of you, or even just one person.
"Love and best wishes to all of you."
-- Bill, son of Faith1330, diagnosed metastatic in August 2017