Best doctor/hospital for laryngeal cancer (recurrence)?

Emilymoroz

DarcyS said:

Dr Haraf and UofC

Emily, 

We love Dr. Haraf and U of C.  My husband was first seen in Grand Rapids, Mi.  We went to U of M and U of C for treatment options and chose U of C and never regretted it.  5 1/2 years later life is great with minimal lasting side effects.  My husband had ssc of the piriform sinus with 2 lymph nodes affected.  T1N2bM0 stage 4, a very scary diagnosis and we were also very scared of the treatment, it was very difficult but doable.  He also had induction Chemo for 6 weeks followed by 50 in patient radiation sessions with 24/7 chemo over a 10 week period.  The doctors and nurses were all very knowledgable, helpful, supportive and really helped us through the difficult treatment. Everyone is a bit different in how well they tolerate radiation and the location of the tumor also affects outcomes.  The drs at U of C are very good at listening and helping manage the side effects.   I highly recommend them to anyone with a head and neck cancer diagnosis.  Tell your mom there is hope and my husband and many others are proof.  Have her follow the drs. orders, and check this site frequently for support, tips and many others in her posistion.  She is not alone.  I remember the way you are feeling, it is very overwelming and scary.  We just had my husband's 5 year check up several months ago and we will see Dr. Haraf one more time next year.  We will miss seeing him.  Hang in there before you know it, your mom will be through treatment.  

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!

DarcyS

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!

Worse time during treatment

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.

Sprint Car Dude

Good Luck

Wishing you the best of luck. Go Steelers.

Billie67

my CA was on my vocal cords

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

DarcyS said:

Worse time during treatment

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.

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

DarcyS

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

55 years old

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

DarcyS said:

55 years old

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.

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....

DarcyS

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....

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.

Billie67

aak16 said:

Update

Thanks to all of you who have commented. In additional to my intiial recommendation at UPMC, I ended up getting three additional opinions- Cleveland Clinic, Memorial Sloan Kettering, and Massachusetts General in Boston.  Basically I need at least a partial laryngectomy. Thankfully I've joined some laryngectomy support groups on facebook and the members have made me realize that this surgery doesn't ruin your life.  I will go into surgery on March 29th at Cleveland Clinic hoping for a partial but prepared for a total if the doctors get in there and decide a partial won't cut it.

hope you are doing well and

hope you are doing well and that the surgery is the last you will need

Emilymoroz

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.

Will keep you posted
Thank you so much!! I will keep you posted on hopefully positive outcome!:)))

Emilymoroz

Emilymoroz said:

Will keep you posted
Thank you so much!! I will keep you posted on hopefully positive outcome!:)))

Hello!

Just wanted to tell you that my mom finished her radiation last week, and even though she relatively danced thru her cycles, last cycle nailed her down completely. I hired her around the clock care now... How long was your husband recovery??? Thank you for all your responses!!!

wbcgaruss

OK aak16

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.