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.

@fracturedd, I moved your message to this discussion group dedicated to people living with esophageal cancer. I recommend you follow the group and connect with members here:
Esophageal Cancer https://connect.mayoclinic.org/group/esophageal-cancer/

Allow me to introduce you to @lori57216 @davevb @survivorsuz who may have some tips on managing symptoms and wellbeing during chemo. Before taking any supplements, be sure to speak with your oncologist to make sure that they do not negatively interact with the chemo. For example CBD can help with some side effects, but can also lower the effectiveness of some treatments like immunotherapies. Best to check.

Walking sounds good. How much activity are you able to do?

REPLY

I’m in agreement with Colleen to be open with your oncologist about anything you are taking over-the-counter.
Talking with a dietitian helped me find things that were nutritious but easy to digest. Also eat very small portions frequently.
Walking outside on flat ground like a parking lot helped me mentally to achieve a little more each day and felt a little more normal. Lying in the sofa was mentally sombering and digestion was better with more movement.
Keep positive and ask your oncology team lots of questions & share concerns. There are sometimes alternatives that can help by adjusting the frequency or dosage of treatment plans. It requires you to discuss your experiences with your team.
There will be rough days but also look towards the end result of good health again.
I was diagnosed 2019 and have had chemo, radiation, surgery and now lead a relatively normal and happy life. Hopefully you can too!

REPLY

@survivorsuz Wow thank you soo much! What a uplifting post, I needed that. I’m working with a great team of doctors. I tell my oncologist everything. I would never take something without approval. Not at this point anyway…I workout in the morning before I eat with 5lbs weights, do a little yoga, and walk throughout the day. I’m up to 3800 steps. Which is really good for me. I have pretty bad lungs from a childhood illness so I need to keep moving. I was just put on 1 litter of oxygen (I had pneumonia). The pneumonia is gone but I’m still winded easily. I need to get my weight up. Any good tips for nutritious snacks would be appreciated. I go outside as much as possible and I focus on my full recovery! Thank you:)

REPLY

Calories is what I needed after my esophagectomy and I had issues with really cold things like shakes. Also had problems with digestion of sugars of more than 10grams, so that knocked out many sweets. So turned to oatmeal with butter, peanut butter on graham cracker, cheese sticks, yogurt, protein bars and add whipped cream to sugar-free hot chocolate.
But read labels carefully! Watch for sugar alcohols that I found were hard to digest, but perhaps your system can tolerate things differently.
The dietitian will be able to give suggestions and recipes to try.
Best of luck and keep us posted on your progress.

REPLY

@survivorsuz Thank you, I will update. Wednesday I get my pet scan, so I’m hopeful things will look ok. I might need more treatments before surgery. We will see…..

REPLY

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.

REPLY

I was diagnosed last November with this,stage 4 now, 28 shots of Radiation & 6 Chemo diminished the tumor 95+ % HOWEVER, it spread into my spine, so 10 more radiation! I didn't know there was a pill! So far, so good, no bad side affects! BUT NO CURE ALSO!

REPLY
@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.

Jump to this post

@pellaw Wow that’s great! I can’t have radiation so I’m on oral Capecitabine and Herceptin. Although I only did 1 round of the oral chemo because it made me really sick, so they stopped it for awhile. They said after my pet scan we can revisit starting it again. I’ve continued with the herceptin, so I’m just hoping this scan looks ok. Thanks for sharing:)

REPLY
@cobraguy223

I was diagnosed last November with this,stage 4 now, 28 shots of Radiation & 6 Chemo diminished the tumor 95+ % HOWEVER, it spread into my spine, so 10 more radiation! I didn't know there was a pill! So far, so good, no bad side affects! BUT NO CURE ALSO!

Jump to this post

Ugh I’m sorry to hear that. No bad side affects is a huge positive! Yes the chemo pills I took were Capecitabine. Made me really sick. 2 nights in the icu total 7 nights in the hospital. My daughter found me unresponsive and had to call 911. But I feel better now, just need to keep gaining weight and get back on chemo. Still doing the herceptin infusions. I’m hoping my scan looks ok. Thank you for sharing you story with me:)
We just have to keep moving:)

REPLY

GERD, Barrett’s Esophagus & Esophageal Cancer:
A Path to Save Lives
A Virtual Collaborative Conference for All Stakeholders
Friday, September 10th – Sunday, September 12th

Register here: https://ecan.org/a-path-to-save-lives/

REPLY
@fracturedd

Ugh I’m sorry to hear that. No bad side affects is a huge positive! Yes the chemo pills I took were Capecitabine. Made me really sick. 2 nights in the icu total 7 nights in the hospital. My daughter found me unresponsive and had to call 911. But I feel better now, just need to keep gaining weight and get back on chemo. Still doing the herceptin infusions. I’m hoping my scan looks ok. Thank you for sharing you story with me:)
We just have to keep moving:)

Jump to this post

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!

REPLY
@neurod

GERD, Barrett’s Esophagus & Esophageal Cancer:
A Path to Save Lives
A Virtual Collaborative Conference for All Stakeholders
Friday, September 10th – Sunday, September 12th

Register here: https://ecan.org/a-path-to-save-lives/

Jump to this post

Hello @neurod, Welcome to Connect. I see that you recently joined Connect and this is your first post. You will notice that we added to your post link so that other members will know where the link goes.

Are you able to share a little more about your diagnosis and treatments that have helped you?

REPLY
Please sign in or register to post a reply.
  Request Appointment