Meeting the surgeon
It has been awhile since I’ve posted and wholeheartedly apologize for the delay! So much has transpired and very hectic between work, chemoradiotherapy and the holidays! My husband who was diagnosed with Adenocarcinoma T3N1MO just completed chemo and radiation recently! We are meeting his surgeon next Friday! He will also have a Pet Scan and see his oncologist again! He has been able to take in solid food again which has been a blessing! Not the amounts he did previously but none the less a blessing! I continue to do his j tube feedings every night as well and he has gained some weight back! The surgeon he has does MIE surgery, another blessing I might add! Other then fatigue, my husband is in relatively good spirits and looking forward to moving onto the next stage to try and eradicate this monster! It seems a miracle but he never once experienced any soreness in his throat what so ever despite the weeks of radiation he endured! We were cautioned to be prepared and even purchased a special “magic mouthwash”, prescribed by the doc, but never needed it! Our primary doc ordered 2 tsp of turmeric and 2 ounces of aloe Vera juice to be dissolved and added via feeding bag! I feel this has made the difference! I don’t know of any other logical explanation! The Nurses and docs at the cancer center are very interested in this and amazed! We realize we have a long way to go and still continue to pray that surgery will go well and for good results from the Pet Scan! I want to personally thank dear Loretta and the other people who responded to my previous posts! Loretta has been a blessing beyond words! With words of wisdom, links and helpful tips, info! And everyone who responded has given me hope! Hope is the biggest things I could ask for! I will try to be better about updating and checking in! Obviously when the surgery is scheduled, I will be taking time off from work! I am thinking at least 2 weeks but not sure if I will need more? I am his primary and only care giver! Any thoughts about what kind of time off I might be looking at? Also, has anyone else had turmeric & aloe Vera suggested? I can’t say for sure if that’s why he hasn’t had any esophagus pain but I know that it has been wonderful! Know I appreciate all the prayers, helpful info and words of wisdom from you wonderful people! I am praying for you as well! God bless!
Comments
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I would plan on at least two weeks after surgery
Hello Mtngirl,
I am glad to hear that things are going well with the first part of your husband’s treatment plan. I would plan on him needing your help with things around the house for at least the first two weeks after surgery. If he has a minimally invasive esophagectomy, his incisions should heal relatively quickly, but he will still have some weakness and shortness of breath after surgery. In addition, surgeons typically prescribe narcotic pain medication for a few days after surgery, and that can make him kind of fuzzy headed and drowsy.
I had “open” Ivor Lewis surgery so my recovery with a bit more extended than someone who has a minimally invasive procedure. For the first couple of weeks just getting up, brushing my teeth, and shaving would tire me out and I had to head for the couch for a rest afterward. But even with an MIE your husband will find he tires very easily. And of course, there are in inevitable challenges to eating provided by a modified digestion process.
My experience is that surgeons tend to minimize some of the challenges and adjustments we find after surgery. Probably because most don’t really follow their patients long term.
I did not have Turmeric suggested by my doctor, but based on research I have done, I take a Turmeric supplement every day with my evening meal. There is anecdotal evidence that turmeric kills esophageal cancer cells. And if nothing else it also reduces inflammation so that can’t be a bad thing.
Be sure to stock up on lots of high protein “soft” things to eat for when your husband comes home from surgery. Things like scrambled eggs, and high protein smoothies will be his diet early on. He will probably need to avoid, items high in sugar content, spicy foods, and foods hard to chew and swallow for a while.
Best Regards,
Paul Adams
McCormick, South Carolina
DX 10/2009 T2N1M0 Stage IIB - Ivor Lewis Surgery 12/3/2009
Post Surgery Chemotherapy 2/2009 – 6/2009 Cisplatin, Epirubicin, 5 FU
Eight Year SurvivorLife may not be the party we hoped for, but while we are here we might as well dance!
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Thank you
Thank you so much! I appreciate the advice! Yes, the tumeric and aloe vera juice were prescribed for inflammation and to help protect his organs from radiation our doc said! He also said that oncology is coming on board with this idea! As I said, I don't know if it was what kept the pain at bay, but I am so relieved that he didn't endure the throat pain! He has endured enough and we aren't done yet! I will put in for 2 weeks and monitor him and make a decsion for more time based on how he is doing! He has been a little under the weather the past couple of days. Not sure if it's a little virus or residual effects from the radiation. Temp hovering around 99.7 and he is feeling full very quickly. Also fatigue, but to be expected. Keeping an eye on him at this point and would certainly contact doctor asap if temp reaches 101. Next Friday is the Pet Scan and meeting with the surgeon so I am quite anxious forr that naturally. Thank you for the information! It is greatly appreciated!
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Hope surgery goes well
Hello Mtngirl,
I'm not familiar with the tumeric & aloe vera your husband has been using, but if it worked, then good for you guys. I think it's great that your surgeon will be doing the MIE surgery. I was supposed to have mine done laproscopically, but I had some previous scar tissue in the way, so I got switched to an open surgery midstream. Took a few hours longer than expected and they had to call in another surgeon. Got lucky that my hospital just so happened to have an excellent spare surgeon sitting around. Recovery was rougher than I was expecting because I got pneumonia (that REALLY sucked---tell your husband to use his "hug pillow" no matter how much it hurts.) I hope you get great results on the PET scan. Some folks where you guys are look to this stage of testing to decide whether or not to have surgery. I think that is misguided and shortsighted except in rare circumstances. I am glad that you guys are following through with the trimodal treatment and giving yourselves the best chance for success beating this beast.
Best wishes to you guys,
Ed
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Ed
Thank you for sharing your experience's as it has been very helpful! I am amazed what a human body can endure and at the same time sad that anyone has to endure that much! I feel right about my husbands decision to go forward with the surgery! I feel it will lessen the chance of cancer coming back at least and give him a fighting chance! He has done amazingly well through treatment! The biggest side effect has been fatigue. But no pain in throat or redneess, burning of skin which tumeric & aloe may have played a part! The only issue recently, over the last few days is that he hasn't been feeling quite himself. He feels full very quickly and says he feels pressure in his head after he eats? His temp keeps going up and down between 98.6-99.7. We were told to go straight to the hospital if it gets to 101 or above. I have been urging him to get in and see doc tomorrow but he insists on waiting until Friday when he will see doc anyways! Previously he had been eating quite well, almost like normal. Not sure if it's side effects of radiation catching up or what and guess I wont until we see doc! Again thank you for sharing and God bless!
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Perhaps hyperglycemia?
Hello Mtngirl,
Sometimes people complain about a feeling of pressure in their head and feeling slightly unwell when they are suffering from steroid induced hyperglycemia. Most chemotherapy protocols include administration of steroids to reduce nausea. Sometimes steroids can increase blood sugar levels in people with typically normal blood sugar levels. And of course, high blood sugar levels cause the body to create insulin and increased insulin and an empty stomach can cause a “blood sugar crash” or reactive hypoglycemia. Is your husband still taking nausea medications by any chance?
Or it could just be that he is having some minor virus induced sinus issues, that could also explain the “feeling full quickly” and pressure after eating?
Best Regards,
Paul Adams
McCormick, South Carolina
DX 10/2009 T2N1M0 Stage IIB - Ivor Lewis Surgery 12/3/2009
Post Surgery Chemotherapy 2/2009 – 6/2009 Cisplatin, Epirubicin, 5 FU
Eight Year SurvivorLife may not be the party we hoped for, but while we are here we might as well dance!
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kbdarnall
Hi Mtngirl- I hope your visit with the surgeon goes well. Will your husband get PET and endoscopy? Today, our radiation-oncologist said the "killing effect" of radation continues for a number of weeks after treatment stops. So, a PET scan won't give a true picture of progress until later. I wonder if endoscopy give a better estimate of residual disease. On January 25, we will visit the GI doctor who performed the endoscopic ultrasound. I will ask lots of questions.
My husband also gets full quickly. The nutritionist suggested less chewing and more drinking to maximize calorie intake. She suggested coconut oil to add calories. It is tasteless and has more calories than any other kind of oil. So, my husband drinks smoothies in the early part of the day. Afternoon and evening, he eats solid foods...slowly... to avoid food stacking up in the esophagus. If he gets reflux at night, he drinks a couple ounces of heavy cream and this seems to calm things down. The oncology nurse said Taxol causes a lot of stomach acid.
Today, he finished 2nd chemo and 5th radiation treatment. His cancer was 5 cm on Dec 6. Then it was staged T3,N0,M0. Husband's appetite has improved since chemo/radiaiton began. Fatigue is significant. He sleeps a lot. But his mood is much better now that he is DOING SOMETHING instead of nervously waiting for test results.Today, the oncology nurse said eating will probably get harder before it gets easier.I wonder.
We take walks once or twice a day. Sometimes my husband complains of pain across his chest and up his forearms. It is worse in cold weather. I wonder if there's some reflux going on. He burps a lot because the GE tumor is distending the esophagus and keeping it open.
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Steroidspaul61 said:Perhaps hyperglycemia?
Hello Mtngirl,
Sometimes people complain about a feeling of pressure in their head and feeling slightly unwell when they are suffering from steroid induced hyperglycemia. Most chemotherapy protocols include administration of steroids to reduce nausea. Sometimes steroids can increase blood sugar levels in people with typically normal blood sugar levels. And of course, high blood sugar levels cause the body to create insulin and increased insulin and an empty stomach can cause a “blood sugar crash” or reactive hypoglycemia. Is your husband still taking nausea medications by any chance?
Or it could just be that he is having some minor virus induced sinus issues, that could also explain the “feeling full quickly” and pressure after eating?
Best Regards,
Paul Adams
McCormick, South Carolina
DX 10/2009 T2N1M0 Stage IIB - Ivor Lewis Surgery 12/3/2009
Post Surgery Chemotherapy 2/2009 – 6/2009 Cisplatin, Epirubicin, 5 FU
Eight Year SurvivorLife may not be the party we hoped for, but while we are here we might as well dance!
He did in fact have steroids with every chemo infusion as he had a bad reaction to Taxol. Therefore Doc ordered increase in steriod's! I just took his temp this evening and it was 99.4 but he states that he is feeling a bit better today! He eat some diiner tonight as well! I do tend to worry I guess! But will bring these things up to Doc on Friday! Thank you so much for everything! Please know how much I appreciate the replies, advice and information as well as your sharing! God bless!
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Pet Scan
Hi there! I am so glad your husband has started his treatment! Yes, the waiting around for results is nerve wrecking to say the least! My husbands demeanor got better once he started treatment to! As a few weeks passed, he started taking in some solid foods again and that just changed his whole affect! That is what he missed the most! Before treatment he was barely able to swallow water and he was really down! Very unlike him as he is an optimist! My husband was staged at T3, N1, MO. Very similar as your husband! They are going to do a Pet Scan but all I know is Radiation Oncologist said they may not do another Endoscopy as they will be going in anyways with the surgery! I wondered about this myself! I am anxious for Friday to meet with the surgeon and discuss everything! My husband also had pain in his chest during treatment! Much less noticeable now! More so when the tumor was still obviously large! It got better after a few weeks or so of radiation so I believe the tumor has shrunk as he is also able to take in solid food again! I hope it will get better for your husband as time goes on! My husband also had alot of belching! The coconut oil is a great suggestion! I was amking him healthy smoothies in the beginning and adding protein powder but he never really cared for them unfortunately. I make them for myself every day just to get some veggies/fruit in me that I normally wouldn't have time to eat with my hectic schedule! I work in a High School full time! But thank God, he is able to take in solid foods thus far and he also has a j tube and receives nutrtion every day from that as well! I am so thankful that the fine folks on this site suggested it! He had lost alot of weight and that has been his savior! Also he will need it when it comes time for the surgery! Does your husband have one? My husband also has a medi port placed which saves alot of needle sticks and can cause problems with the veins over time with all the treatments! I am just glad he has these in place now before surgery! My husbands biggest side effect has been fatigue for sure! He continues to go into work on a lighter duty however. He is a Power Lineman. He obviosly can't climb right now but he rests and falls asleep easily when he is home! It is good you are taking walks with him! Know that I am praying for him and you! I will try and check back more frequently and hope all goes well:) Take care!
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