Daughter, 45 anaplastic thyroid cancer. Had surgery, chemo, radiation.
She now has a tracheostomy and feeding tube. FT is finally going ok. But the trach causes Phlem that she has to constantly clear and spit out. It is the bane of her existance. Any one else dealt with this same thing?
Interested in more discussions like this? Go to the Thyroid Cancer Support Group.
Hello @swenson and welcome to Connect. I am so sorry to hear of your daughter's diagnosis and current post-surgery problems. It does sound like a very difficult situation for your daughter and you. As I personally, do not know much about this type of cancer, I found some information on the WebMD website. Here is the link, https://www.webmd.com/cancer/anaplastic-thyroid-cancer-overview.
On Connect we have other members who have discussed thyroid cancer. Here is a link to those discussions, https://connect.mayoclinic.org/group/thyroid-cancer/.
How long ago was your daughter's surgery? Have her oncologists offered any helpful ideas for dealing with problems with the trach and phlegm? Has a visiting nurse been suggested?
Her surgery was in November 2020. Not a whole lot can be done for the trach and phlem. Hoping to get her esophagus stretched this late fall so that she can swallow it (the phlem). She can't swallow at all now. We did get referred to visiting nurse but she and one of us travel the 2 1/2 hours from our house to hers and spend time both places so didn't follow up. We feel like we don't really need one right yet. She takes her oral chemo and meds herself and does her lymphedema stuff and mouth care pretty well. Has to crush everything and put it through the feeding tube. Thanks!
I appreciate the additional information about the procedure to stretch the esophagus. Is there a date set for this yet? I'm wondering how your daughter is holding up given this difficult situation.
Will you keep in touch with any questions or concerns?
No date set for at least another 3-4 months. It’s really tough. Right now she’s in extreme pain from a cellulitis bout or oral chemo reaction on her face. Been taken off the chemo for a few days and on 2 antibiotics. No fun. Thanks for asking.
Swenson, fellow members like @peggyschr and @lori57216 might have more to share about esophageal dilation (stretching).
You might be interested in this blog post and the comments:
– Esophageal Self Dilation Therapy: An Effective Alternative https://connect.mayoclinic.org/blog/gastroenterology-and-gi-surgery/newsfeed-post/esophageal-self-dilation-therapy-an-effective-alternative/
I sure hope that she gets relief soon and gets to the bottom of the current issue with the pain from cellulitis or chemo reaction
Swenson, how is your daughter doing?
She and her 4 dogs moved back to her home yesterday 2 1/2 hours from us. Pretty quiet here and there but a monumental step. She hopes her nurse friend will be able to change the trach dressing. Thanks for asking.
Sorry to hear about your daughter’s cancer. My 30 year old son is diagnosed with anaplastic thyroid cancer. May I ask what was the name of the chemotherapy drug she was given? Sounds like it worked for her. My son had a 2 lb mass removed from his neck and is now doing chemo and radiation. Praying for good results with this aggressive cancer.
Sorry about your son. We can’t remember the names of the infusion chemotherapy drugs. Ones nickname was “tater”. One caused a reaction twice. She is on oral chemo now. Mekanist and Tafinlar. Is your son able to swallow? Where is he getting treatment ? Let’s keep in touch.
Thank you, the chemo he is on it Taxel. It is going in through a pic line. He is able to swallow, he had his thyroid removed and the mass was on the side of his neck. He starts radiation next week as well. He had his surgery at Princess Margaret in Toronto. Thank you for responding, it is comforting to know we are not alone.