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My husband diagnosed 4 weeks ago -Esophageal Cancer- HELP
Hello,
I am looking for advance and success stories to help us navigate this difficult journey. My husband, just 50, started this journey not feeling in August, dropped about 20 lbs and started throwing up while eating. He scheduled an endoscopy and colonoscopy and in the office they told us he had a bleeding mass in his 3rd quadrant. That day we got a CAT scan which revealed a spot on his liver, thank god it turned out to be a hemangioma (blood vessels) - the PET scan revealed it had not metastasized to his organs, so we are in a window of cure as the doctor stated. We are working with a team of doctors at a Pennsylvania a Hospital in the thoracic surgery, division. All the doctors seem wonderful, and have great reviews and accolades. He had a feeding tube placed last week, which landed us in the hospital for four days as they want it to monitor his feeds, and he had his port placement this week. To say the least we have been so scared and a roller coaster of emotions. My husband still hasn’t cried in front of me. I’m 44 years old and I’m scared shitless and I consider myself a super strong. This is definitely the hardest thing I/ we ever had to face. My husband was still eating soft food like mashed potatoes, soups, yogurt, smoothies, and pudding but yesterday he started throwing up while eating a smoothie so it’s been hard to get to the a lot at 2200 cal that the dietitian wants him to eat. Were using the feeding tube at 100 mL per hour. He gets a lot of cramping in his stomach after the feeds and we tried feeding at night but he’s uncomfortable on an incline. I can’t sleep, which is always had sleeping issues more over. He usually sleeps on his stomach and now can’t do to the port in the feeding tube. Last night he tried to take an Tylenol and it got stuck in his throat and threw up. We start chemotherapy on Friday of this week, and I’m scared that due to all the complications with getting him allotted calories already that this is going to fail. The plan is that he will be doing chemotherapy for two months to shrink the tumor and hopefully attack the lymph nodes that are lighting up on his pet scan if all goes well, he would move to radiation for 6 to 8 weeks targeted on his third quadrant of his esophagus, if that goes well, he would move to surgery after four weeks of rest. They prefaced the post up with about 12 weeks of recovery and about 1 to 2 weeks in the hospital. They placed a feeding tube preemptively because he had lost so much weight and they wanted to keep his caloric intake up and didn’t want to have to operate during the treatment which would altar in delay possible outcomes. The doctors didn’t tell us the stage of the cancer but they said it was aggressive and therefore they’re attacking it with an aggressive treatment and someways. I’m glad we don’t know the staging. We are so numb and feel like our lives have been ripped out from under her feet. I can’t stop crying uncontrollably I took leave from work to care for Joe and to deal with my own emotions and Joe has not been working since he found out. On top of the health stress. We also now have financial stress and worry. I’m just wondering with all of this what to expect. Although we are so scared and so worried I’m grasping desperately to Hope.
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My Dad just had surgery a month ago he is 74 the surgery wasn't bad at all he will start on January chemo/radiation now so far he been eating good without any issue the gtube was removed like two or three weeks after surgery he eats from the gtube just like two weeks.God is amazing he is just struggling to gain weight now.
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4 ReactionsYour story sounds very familiar to my husband’s. You will get through this though! If it wasn’t for the Lord and the strength he gave, I’m not sure we would’ve made it through so well.
My husband Who was 57 years old at the time this past March when he had problems swallowing. We had to push our doctor to get him in for an endoscopy to get scoped . By April 19 , During that week, he saw a G.I. doctor, and he took him in right away in two days to get an endoscopy. He told us immediately after the procedure that my husband had cancer. He was compassionate yet forthright. The following week he gave us the biopsy results as adeno carcinoma and later that week, after a pet scan was diagnosed stage three. That doctor also put a peg tube in that week because he was concerned over my husband’s 20 pound weight loss. My husband didn’t start tube feeding until he really felt that he could not eat. He hated pushing the tube feeding in 5 to 7 times a day to get his caloric intake so I encouraged him to get the pump so that it can administer what was needed. He loved it. He also started right away in May with A strong chemotherapy and radiation regime. Six weeks of daily chemo and daily regiment of radiation Monday through Friday. By week 4 to 6 he was getting weak, tired, and definitely not eating anymore. Everything was by tube feeding. Medication’s as well. Some sternal chest pain because the tumor was starting to shrink and change shape, which stimulated nausea and vomiting occasionally. My husband lost A lot of hair, but mostly it had turned white and was like peach fuzz. My handsome 57-year-old looked like an 80 year old. After the therapies, he was given 6 to 8 weeks to recover. The first two weeks were miserable. After that, he started feeling better, and was able to actually start eating again. He started to gain his hair and strength.
During this time, we had people over the world. Praying for my husband. God it taken him through some very hard times. Very dark times. A lot of the symptoms your husband is experiencing is what my husband also experienced. You just have to find what works for the rate of the tube feeding, etc. It’s not worth chancing to eat orally if he feels he gets it stuck or gets nauseated. We had to experiment with different nausea medication’s as well. Compazine and or Reglan seem to help. The capsules of Nexium does not go through the PEG tube so stick to the Pepcid if possible.
We journaled everything from tests to how he felt every day.
He was a patient of the local cancer hospital here for his chemo and radiation and he had fantastic doctors. But they referred him to UCLA Medical Center in Westwood, California for the surgeons there are phenomenal.
We had a detour when the doctors recommended the stress echocardiogram to check to make sure he it was ready for his esophagectomy at UCLA. Unfortunately, it showed that my husband had five blocked heart vessels. We had no idea that he had any heart condition. He had no symptoms. So two days later on August 11 the UCLA cardiothoracic team did a quadruple bypass on him. After six weeks of recovery, he was already walking 3 to 4 miles a day and feeling really good. But he knew we had to proceed with the esophagectomy. That was done on September 28 of this year. That was an 11 hour surgery but they took 2/3 of the esophagus and a few lymph nodes. They did several biopsies and everything came back negative. He is now cancer free! They had placed a jejunostomy tube and removed the G tube So that he can still feed himself by two feeding. After a few weeks, he was allowed to start eating clear liquids, then full liquids, and then onto a regular diet. He is still recovering, because that was quite a hard surgery after a cardiac surgery but he is in cardiac rehab, using the treadmill to get his stamina back. He is eating anything and everything now but more like 1/2 or 2/3 of the amount he used to eat so he eats about every 2 1/2 hours during the day. No nausea or vomiting and he is gaining weight. He still has a lingering cough from time to time which can be normal for this kind of surgery. He has all the tubes and lines out of him finally.!!
I hope this helps and if you have any questions please write me. It’s been a big journey but surprisingly everything happened pretty fast considering all the things that he went through. He just has follow up appointments now for tests but otherwise no treatments etc. We are done! But we could not have done it without the Lord. He gave us such a peace and grace to get through it all. Financially, it wasn’t easy, but our life group class at church surprisingly gave us a hat filled with cash they had gathered while we were out. That helped with many bills. I could not have done it without the Lord. I pray that you will get through each day with his love and support.
Patti
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6 ReactionsThank you Patti, it sure does sound very familiar. We had the first round of chemo this weekend and it was rough. A lot of throwing up and he could not get much food down, due to nausea, so he was mostly using his feeding tube, which takes like 9-10 hours a day. He can’t sleep with it running, at least for now. After the chemo was in hooked on Sunday, but Tuesday he started looking better. His color came back to him and he looks healthy. We have our next treatment on the 29th. Needless to say, this holiday will be pretty low. We are trying to keep in good spirits and we have a lot of people thinking about Joe and I. It is gonna take a village. This is surly the hardest thing either one of us has faced. It is hard to imagine this is still the very beginning of our journey after how hard it was to watch how sick Joe was over the weekend. He did try to eat this weekend, but if he eats too fast, it results in throwing up a lot of very thick clear-ish phlegm. I read this is also due to the tumor. Joes pet scanned showed his lymph nodes lighting up, do you know if the chemo treated his lymph nodes as well, since they can’t due a biopsy on them until the surgery we can not tell if these would be an issue down the road. Did they know which ones to take out before your husbands surgery? Did he always have to do immunotherapy? Thank you for sharing this is so very helpful. Natalie
Thanks for sharing. This is comforting. I hope your journey continues to be successful.
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1 ReactionI can tell you it's gonna get worse before it gets better.i have been there I was Stage 4 A.i was 48.I am completely cured but it was touch and go for a while. If yall need advice or just wanna talk .I am 59 now.God speed .
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5 ReactionsI can tell you there is a risk of infection at the port.also at the Peg hole button.also Radion will kick him at about 2 weeks and Chemo is gonna make him sick .I had 7 rounds Chemo and 35 rounds Radiation. God Speed
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3 ReactionsThank you so much 😊 wow, I am so glad your healed.
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1 ReactionGod speed God is really good .Thank ya'll
Thank you Lord! We praise and exalt You! My husband’s doctor just called us with the results of his PET scan. The scan showed NO EVIDENCE OF CANCER! We are humbled at His goodness and mercy, and we thank you all for your prayers. Please continue to pray as B continues maintenance treatment. It is being pushed back until the 17th because the scan did show inflammation in his lungs (from radiation and other treatments and probably the cause of the cough). Rejoice with us and praise our Good Good Father! Merry Christmas!
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3 ReactionsHow did the scan go?