Chemo for esophagus cancer: Any advice on things I should or not do?

Posted by fracturedd @fracturedd, Sep 5 7:21am

I was recently diagnosed with Adenocarcinoma of the esophagus with her2 “positive”. I’ve been on one chemo pill and one infusion. The pills gave me ulcers in my colon along with every other side effect and I ended up in the ICU for 2 nights- 7 night hospital stay. Since then they haven’t started me on the chemo pills again (they said I need a break to heal) so I’m only on the infusion. My follow up pet scan is wed and I’m scared that only being on the one infusion just wasn’t enough. I’m trying to stay positive. Anyone have any advice as far as extra supplements or things I should or shouldn’t do. As of now I’m walking, take curcumin, vit d, acupuncture, cbd oil, that’s really it. Any positive info would be appreciated.

@cobraguy223

I'm in Florida & MMJ law is legal here! I use MMJ every day,CBD, Tinctures, Capsules, & RSO, Rick Simpson Oil, I have no nausea, none! It takes away most of my pain also, The bonus is I get 5-6 hrs sleep instead of three!They're monitoring the MMJ reactions to the Ketruda!

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@cobraguy223 i don’t know what MMJ is? Ohhh-duh it is legal here as well. I’m in Chicago. My doctor told me to get the card. I haven’t yet. I have also tried RSO. Powerful stuff. I can only use a rice grain size. Any other suggestions for me to try. Something not too strong but to enhance my appetite. Happy the RSO world for you. It also makes me a little paranoid, lol. Like I pay to close attention to my breathing. Soo small grain of rice:)

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I use the RSO every night! 6-8 Grains of Rice, YUP it's powerful!

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@cobraguy223

I use the RSO every night! 6-8 Grains of Rice, YUP it's powerful!

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@cobraguy223 wow! I would sleep for a week. I’m pretty small. I have to build my tolerance I suppose. I will get there:)

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Did you have complications in esophagus? I’m having to check on for Barret Esophagus

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@rexsan20

Did you have complications in esophagus? I’m having to check on for Barret Esophagus

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I was on esomeprazole for gerd- for many years. It worked well for me and I did not have complications. My solutions were from aspirating into my lungs which caused me very short of breath. That is what brought me to the hospital and how my cancer was found. Hope this helps. @rexsan20

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@pellaw

Combination of 5 chemo and 28 radiation treatments with shrunk the tumor (stage 3) to best case outcome. 6 weeks later esopagectomy was performed robotically also with no residual cancer found.

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Hi @pellaw, I want to add my welcome. Great to hear of the success of your treatments. When did you finish treatment? How are doing today?

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Chemo & radiation was completed in June. Esophagectomy was August 10 with Dr Reisenhauer. Currently weaning off J tube.Follow up will be Sept 28 to remove J tube. I am eating Whole Foods according to the suggested menus. I won’t say it’s been easy but I have been so fortunate to have no complications or surprises. We did purchase a adjustable bed because, as I understand it, sleeping at an elevation will be forever.

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Thank you all for sharing
Your positivity is inspiring for the road ahead for Michael and myself

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@pellaw

Chemo & radiation was completed in June. Esophagectomy was August 10 with Dr Reisenhauer. Currently weaning off J tube.Follow up will be Sept 28 to remove J tube. I am eating Whole Foods according to the suggested menus. I won’t say it’s been easy but I have been so fortunate to have no complications or surprises. We did purchase a adjustable bed because, as I understand it, sleeping at an elevation will be forever.

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I decided against the adjustable bed as I sleep very well on our current mattress. We just elevated the head of the bed about 5 " and that seems to work for the most part. If I need more upright position for a while I transfer to the lift chair / fancy recliner that lives in our master bedroom. Your story mirrors mine exactly. After my J tube fell out 10 days early I just left it and just consumed that nasty stuff orally ( after consulting with numerous specialists ). Added some taste enhancing stuff so it was palatable ( mint choc. chip icecream, malt powder, banana etc ). I didn't have or follow any specific diet. Just made sure I could swallow without choking and I did transition from the tube to reg. diet regarding consistency. ( J tube, clear liquids, liquids, soft / mechanical, regular ). High fiber ( for the pain pills etc. block up the back door ) and high calorie diet. Regarding the acid reflux I too take esomeprazole 2x / day. Also between I prefer Mylanta for the coating effect. I wish you the very best in your continued adventure. Your doing great!!! And such a positive attitude, your an inspiration to say the least even for those of us who have already experienced and are ahead by about a year regarding our adventure.

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@hearttoheart1

Thank you all for sharing
Your positivity is inspiring for the road ahead for Michael and myself

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Hi Hearttoheart. I just thought I’d check in. How are you and Michael doing?

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@colleenyoung

Hi Hearttoheart. I just thought I’d check in. How are you and Michael doing?

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Morning
Treatment starting very soon now for Michael
Today we are going to hospital so he can get his bloods done,a COVID test and be told the chemo drugs he will be given
On Thursday he will have the port line inserted
On Friday dental appointment
Next week he will start his treatment
I am still in shock as to the suddenness of what is happening
Only a few months ago we were so happy he had reversed his diabetes..but deal with this ,we must
Thank you for your support
I meant to reply sooner
I will let you know how he is doing when we get more info and detail
We had a zoom call meeting with oncology nurse
Explaining what lay ahead and what we can do at home to make life as best we can
I have been given literature which I try to absorb in small amounts
Will be in touch soon again
Please keep up the prayers 🙏😔

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@hearttoheart1

Morning
Treatment starting very soon now for Michael
Today we are going to hospital so he can get his bloods done,a COVID test and be told the chemo drugs he will be given
On Thursday he will have the port line inserted
On Friday dental appointment
Next week he will start his treatment
I am still in shock as to the suddenness of what is happening
Only a few months ago we were so happy he had reversed his diabetes..but deal with this ,we must
Thank you for your support
I meant to reply sooner
I will let you know how he is doing when we get more info and detail
We had a zoom call meeting with oncology nurse
Explaining what lay ahead and what we can do at home to make life as best we can
I have been given literature which I try to absorb in small amounts
Will be in touch soon again
Please keep up the prayers 🙏😔

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What seemed to knock out my Tumor ( So big I could only swallow liquid!) was Radiation! I'm stage four, Radiation all but eliminated the tumor! 28 radiations, 5 chemo! Good Luck!

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