Daughter, 45 anaplastic thyroid cancer. Had surgery, chemo, radiation.

Hi @tobyscott, Princess Margarget Cancer Center is one of the best cancer centres in Canada. How is radiation going for your son? Is he getting it daily?

Hello we are receiving treatment in Thunder Bay, princess Margaret was for surgery only and then told us he will be treated at home. He is getting chemo once a week radiation 5 days a week and keytruda in hopes of stopping the golf ball mass that has returned on his neck. Praying it works.

Swenson, how is your daughter doing? How are you doing?

@tobyscott, getting chemo and raditiation closer to home is a plus.

Good afternoon Swenson,

I was recently in a very similar situation you are in now.
My father was diagnosed with Anaplastic thyroid on June 26th 2002 and died on August 16th 2022, 58 after initial diagnosis.

After a STAT MRI scan was done it showed the cancer had metastasized (spread)
to the bones in his spine,
2 specs his liver,
a spec on his hip,
3 spec on his lungs
and the point of origin his Thyroid

My father went into emergency surgery at UCLA on July 7th to perform a thyroidectomy to remove the huge lump that was forming on the right side of his neck starting to obstruct his airway.

After his surgery he started to have a lot of phlem and loss of appetite. 6 different medications were given to him in order to counter problems and side effects of the cancer and medications. The doctors and Oncologist at UCLA and MD Anderson consulted and formed a team who concluded my dad should start several treatments.

On July 22nd at UCLA he begin oral chemo pill Lenvima, radiation, immunotherapy and ( hydration through IV 2x a week). This had little to no effect on slowing down the ATC.

On Friday August 12th I took my father to the ER at UCLA, he was extremely weak and dehydrated. They rushed him into the ICU. His health was rapidly deteriorating. After he was stabilized they gave him a feeding tube since all the food and water was aspirating into his lungs and he could no longer eat or drink without a feeding tube.
He died 4 days later on Tuesday the 16th.

How long has it been since your daughter was diagnosed?

Also do you know the Stage her ATC is at

Stage 4
IVA-Moderately advanced disease; tumor of any size with gross extrathyroidal extension into the nearby tissues of the neck, including subcutaneous soft tissue, larynx, trachea, esophagus, or recurrent laryngeal nerve.

IVB- Very advanced disease; tumor of any size with extension toward the spine or into nearby large blood vessels, gross extrathyroidal extension invading the prevertebral fascia, or encasing the carotid artery or mediastinal vessels.

IVC- Distant metastasis. Very advanced disease; tumor of any size with extension toward the spine or into nearby large blood vessels, gross extrathyroidal extension invading the prevertebral fascia, or encasing the carotid artery or mediastinal vessels.

Diagnosed with Thyroid cancer October 2020, surgery November 4, ATC diagnosed January 2022. Stage 4, I believe IVA. So sorry how quickly your dad's ATC went.

I hope your son’s treatment is successful. I was diagnosed with ATC in February 2022. I had a complete Thyroidectomy and neck dissection at that time and a tracheostomy was done because the tumor was wrapped around the trachea. Unfortunately there was still cancer left after surgery because my surgeon stopped short of doing a laryngectomy. I am extremely grateful for that because i can speak with the use of a passy muir valve. After recovering i underwent radiation and chemo (doxorubicin). The radiation was extremely grueling. The treatment was very successful however. All that was left of the cancer was one lymph node in my neck! I just started taking Dabrafenib and Trametinib as my cancer has the BRAF mutation. I am hopeful those drugs will be successful in treating the small amount of disease that was left after the chemo radiation. I am also hopeful that I’ll be able to have the trach removed as the swelling from the radiation subsides. This whole process has been a rollercoaster of emotions. Unfortunately there isn’t a lot of positive info out there. I just want to offer others in the same situation a ray of hope. Luckily there are treatment options now for this ruthless disease.

My husband had the same problem with his esophageal cancer. Too thin out the phlegm. I would give him Mucinex severe cough and congestion. There's several different types of Mucinex but I would give him this specific one in liquid form and it seemed to help.

Thanks Kreg , the problem lies in that she cannot swallow. Hasn’t swallowed liquid or food for over 8 months. Esophagus is completely closed. Thank you, though.

Omgosh! I thought my daughter had replied to Toby scott with her dates wrong. Your and her situation are nearly identical. She goes for PET scan next week to Mayo. November 7th she will hopefully have the first attempt to stretch her esophagus so she can begin to swallow. Hasn’t swallowed anything since February. Hoping and praying!

I wish your daughter well with both her PET scan and esophagus procedure. Waiting for the results of the scans is always very stressful. I was lucky and have been able to eat snd drink normally since the beginning. The tracheostomy has been my biggest issue. Of course the cancer is a big worry but at least without the trach i can otherwise live my life normally. Please keep us updated with your daughters progress. We have to remember to celebrate the baby steps.