Best doctor/hospital for laryngeal cancer (recurrence)?

Emilymoroz said:

Darcy, thank you for

Darcy, thank you for responding to my message!! It surely is a relief to see someone like your husband recovering from those monster!! My mom finished with induction chemotherapy and doctors were pleased with results, now she just finished her second cycle of inpatient radiation and is doing chemo- radiation free week. Haraf designed 6 week cycle , with 4 weeks once a day inpatient radiation and last 2 weeks twice a day. Mom is weak and sore and her lots of com0lications from peg tube. I was curious to know when was the worst time for you and when you hit the bottom. Everyone is different but was wondering what you remembered, thank you so much for you response!

Week 4 and on until 6 weeks post treatment were the worst for my husband.  He did not have a peg tube and really struggled to get 4 or 5 ensures plus water everyday and keep them down.  The location of his primary really made his gag reflex high. On the plus side, his continued swallowing really helped  to maintain his swallowing function.  Sorry to hear about your mom's discomfort.  Be sure to share with her care team, they were really good at helping my husband  with the side effects.

my CA was on my vocal cords too. I am in California and I went to USC Keck School of Medicine. I did get 2 other opinions, one at UCLA and the other up in San Francisco area at Stanford. USC was by far the place for me. Not sure if you can come out here but my dr and all the Drs in the group were adamant that we could get it without a total laryngectomy. Mine was StageIV as it had grown outside my cords as well and a couple of my lymphnodes were invaded. I'm here 5 years later, just had my scans and I'm NED! And no stoma for me. I was a preschool teacher at the time and my 2 boys were young, I coudn't imagine not speaking to them anymore. I am so thankful for my dr. I hope that helps

If you want exact name and number let me know

Emilymoroz said:

Thank you so much for

Thank you so much for response!!  It is incredible to hear someone else's story and know now that they are well.... How old was you husband at the time, just curious? My mom is 72. Haraf wanted to do the same cycle ,twice a day for 5 weeks inpatient, but after her induction chemo showed 50 percent shrinkage , he decreased to 4 weeks once a day and last 2 weeks twice a day.... God bless you and your husband and I hope you live cancer free life for as long as God gives you

Emily, my husband was 55 years old and in excellent health.  So, he was a bit younger than your mom.  After induction chemo, my husband had 48% reduction so he did not qualify for the reduced radiation.  Great news for your mom after induction! Someday she will also be post treatment and hopefully living a healthy life again.

Emilymoroz said:

One more question

Darcy sorry one more question... Was wondering if you looked into any post treatment options to prevent cancer from reappearing, with the late stage chances if it coming back are higher.... One oncologist mentioned monthly infusion, another said something about clinical studies..... I did not into that as much as we figthing with primary but was wondering what your thiuggth on that are... How offer did you scans now if any , just curious? Nurse told me today that according to the plan, my mom first diagnostic scan will be in the middle of July, it will show if all this is not in vain.... It is very very difficult for me as well, as I live in another state than my mom and all the help remotely, hiring live in care takers , Skype appointments with doctors, etc....

What we are doing after cancer is pretty much the same as before, healthy living.  We exercise regularly, eat a mostly plant based diet, limit sugar and processed foods.  We have added yoga and intermittent fasting, eating 8 hours of the day and fasting for 16 hours daily.  We didn't look into it nor did any of the doctors mention preventing a reoccurence. I think he had his first post treatment scan 3 months out and then every 6 months for 2 years, then 1 per year until 5 years out.  We have one more appt. in Jan. to see Dr. Haraf but no ct scan scheduled.  You're a huge advocate for your mom.  Being in another state must be really hard.  She is in good hands at UofC.  We would recommend them to anyone going through head and neck cancer.

DarcyS said:

Healthy living

What we are doing after cancer is pretty much the same as before, healthy living.  We exercise regularly, eat a mostly plant based diet, limit sugar and processed foods.  We have added yoga and intermittent fasting, eating 8 hours of the day and fasting for 16 hours daily.  We didn't look into it nor did any of the doctors mention preventing a reoccurence. I think he had his first post treatment scan 3 months out and then every 6 months for 2 years, then 1 per year until 5 years out.  We have one more appt. in Jan. to see Dr. Haraf but no ct scan scheduled.  You're a huge advocate for your mom.  Being in another state must be really hard.  She is in good hands at UofC.  We would recommend them to anyone going through head and neck cancer.

It looks like you have gotten lots of input, information and options to check out.

A partial is better than a full larengectomy so thats a plus.

You sound like you have developed a great positive and fighting attitude to get you

through this.

Prayers your way for the best outcome and godspeed.