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Non-surgical EC patient with stricture/stenosis of esophagus
Hi all,
my sister (38 years old, non smoker, living in Germany) got diagnosed 9 months ago with Stage4 EC in the upper part of the esophagus (~8-10cm).
Due to the size and location of the tumor, it was not possible to do a surgery. She got a radio-chemotherapy in a first cycle with 37 radiation sessions.
After a PET CT she now receives an Immunetherapy since 4 months. A second PET CT shows no progress of the situation.
May be it is just to early to tell, but the critical and very hard part is that frequent strictures in her esophagus do not allow her to swallow food, even water is very hard to get through.
She was fitted with a gastric tube to provide nutrition from outside. She was treated with several dilations in order to extend it to around 10mm, it worked out well until now. But since the last two attempts, it does not work anymore. Due to complications during the dilation (or even before starting; oxygen saturation dropped) they had to stop the attempt.
The fact that she is not able eat solid food or swallow even liquids since almost 9 months is extremely demoralizing her.
Currently the doctors here cannot even tell whether this stricture is caused by the tumor itself or due the scar tissue in the esophagus because of the radiation. In the CT scans apparently they cannot differentiate anymore.
Long story short we are at a point where we do not know which actions to take, and apparently the doctors here either. Radiation is not possible anymore, chemo is not the right choice (based on doctors), immunetherapy does not seem to help, surgery not possible.
I am still reaching out to various clinics for second opinion and try to find an instance willing to do the surgery...(not even sure whether this might be the cure)
I cannot even imagine your feelings, pains and anxiety you are experiencing... I am just a suffering brother trying to find a cure for her sister...
If anyone has an advice, or remark, similar experiences... anything you could share, this is highly appreciated.
Thank you so much!
I wish you all the best!
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Come see us on our free Zoom calls... they are Sundays, 3pm in Germany, as well as Wednesdays, midnight in Germany. I'll assume this is squamous cell EC. I need to know what first line chemo she's done, and where spread is seen... and what immunotherapy she's been on as well as tumor biology. In the meantime, hit that G tube (or J tube) hard... keep as much weight on as possible... and stay hydrated.
Are you also in Germany? You may private message me.
Gary
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2 ReactionsHi Gary,
Thank you very much for your comment. I would love to join your Zoom meetings, is there a way you could forward me the invite link?
Correct, this is squamous cell EC.
She received Paclitaxel between 50-60mg x6 and Carboplatin ~200mg x6.
She now gets Nivolumab, Ipilimumab as Immunetherapy. There was one little spread into the liver, but that one vanished during Immunetherapy after the second PET CT.
What do you mean with tumor biology? i just got the info B2, ST2, F2 .I +1.1 (HE, PAS)
And what exactly do you mean with hitting that G-Tube hard?
I am also based in Germany yes. Sure we can also communicate per private channel.
Best regards
Ismail
Are either of you on Facebook? So simple to use FB video messenger. We can chat there... or use my free Zoom account. Just pick one.
I thought the " gastric tube" you mentioned was a surgically installed G tube, which is in her stomach, maybe 5 cm left of her navel... and goes straight into her stomach. Is this not what she has? Or does she have an NG tube thru her nose down into her stomach? I would doubt this since you said her throat is crazy tight right now. There was a time where I could not swallow even a tiny sip of water. The J tube they surgically installed gave me my calories and hydration for 8 months... just a tool I needed to use to keep me alive while treatments worked on my solid esophageal tumor and I eventually made my way to esophagectomy.
Ok... yes... tight esophagus can be from both tumor growth and from radiation inflammation. Usually radiation shrinks the heck out of squamous tumors (along with chemo)... but no doubt for some, it can also irritate the esophageal tissues and cause even more swallowing issues.
Bottom line... she needs more treatments... whatever they can be. And they're are many more chemotherapy and immunotherapy possibilities. Why they won't try other chemo regimens... I need you to explain that to me.
So where else is spread seen right now? Liver? Kidneys? Lungs? Bones? Lymph nodes?
Ok... you are 9 hours ahead of me. A good time to chat... 7pm your time today?
Here are Zoom codes...
ID - 455 028 4795
Passcode - tuiBE5
But FB works nice too.
Gary Wing
Southern California
Hey Garry, that is correct, it is a gastric tube which is surgically installed in her stomach.
I have pinged you on facebook.
There are no spreads. It is only in the esophagus
Best