Check in + vocal cord rad treatment info (for others in my boat)

donka

Hi all,

Just wanted to do a check in with progress, mostly for any others that come along afterwards in my boat.  I've had a hard time finding info on people with vocal cord cancer and what their treatments were like.  I've got stage 1 squamous cell carcinoma, vocal cords, treatment plan is radiation only.

For those who like the technical stuff (I do, I like to read everything I can), the Radiation Oncologist prescribed 51 Grays of radiation, 2.55 Grays per treatment, 20 fractions or days. I'm being treated with Rapidarc radiation technology on a Varian Rapidarc machine.  The technology looks pretty cool on this puppy.  It's supposed to make treatments 2-8 times faster than with other technology.  I started asking the radiation therapists about it and they got all radiation geeky on me

Going good so far I guess.  I'm on Tx #17, only 3 more to go.  Time flies fast!  Doc said they are blasting me with more Gray's per treatment than they might normally do because I'm otherwise pretty young (38) and in good health, and they want to get it all the first time.  Let's hope their tactic works.

Skin on neck looks burnt, is very itchy and dry.  I think I will start peeling soon.  Feels exactly like a bad sunburn.  I have a pretty dry throat.  Swallowing got really painful and other parts of the throat are starting to get painful too.  Dr. prescribed liquid hydromorphone (Dilaudid) and liquid Ibuprophen.  The ibuprophen mostly because that's what I've found helps the most so far with the swallowing.  I'm eating okay as long as I'm drugged up and I pulverize the food into submission by chewing, though I have given up on anything with sharp bits, like popcorn, and bread.  No amount of chewing makes bread slide down the throat without causing pain. I can not stop eating Gummi Bears and gummi worms, however.

I've never been on anything stronger than an OTC painkiller so this hydromorphone is an adjustment.  I'm itchy, lightheaded, nauseous, and when I need a nap, I need a nap NOW.  I stopped going to work, Tuesday was my last day, that was treatment day 14.  I was supposed to have meetings all afternoon but I was so queasy I felt like I was either going to faint or vomit if I didn't lay down.  I figured at that point that trying to be readily available for work was going to be a challenge and now it's resting time.

Anyhow, just wanted to provide an update on tx's and wish everyone out there good luck with yours.

Cheers,

Donka

CivilMatt

update

Donka,

You sound H&N normal, with a good attitude (you are in the groove).

Keep drinking water and swallowing and have a handful of Gummi Bears and Worms for me.  I had some Hot Tamales the other day.

Matt

debbiejeanne

wow, Donka, i can't believe

wow, Donka, i can't believe you are already on #17!  that amazes me.  it seems like yesterday you told us your story and now look where you are.  i'm so happy for you.  the last 3 will be a memory very soon and you'll be well on your way to healing.

i had T1 cancer of the right false vocal cord.  dx'd 8/27/09.  I had 7000 cGy over 35 fractions.  Lymph nodes received a dose of 5000 cGy over 25 fractions.  my last tx was 10/22/09.  i was 53 when dx'd. the side effect i live with from the rads is I can't swallow well and have to have my throat stretched regularly.  i am always the last one to finish eating and i never finish when i go out because i don't want my company to be waiting on me to finish. Unfortunately, i had a recurrence 2/12 (stage 3) which required a total laryngectomy and neck dissection.  life as a lary is extremely different and was very hard to come to grips with.  i have more problems from the surgery than from rads.  i cannot lift my left up above my shoulder, i cannot turn my hear fully to the left or right, several very big and ugly scars but i've learned to live with all of that.  i'm preparing to get my throat stretched again as water doens't even want to go down my throat and that is a hassle.  that is not a big deal it just doesn't work too long before i have the same trouble again.  overall, tho, i live life everyday and don't let cancer rob me or any more.  its wonderful that you only have to have rads and I pray you don't have long lasting side effects.  i can't wait to hear you rang the bell and i'll do the happy dance for you.  we love to celebrate on this site and that is definitely a great reason to celebrate.  be sure you let us know.  if you have any questions, please feel free to pm me.  i'm usually on here several times a day.

God bless you,

dj

Guzzle

debbiejeanne said:

wow, Donka, i can't believe

wow, Donka, i can't believe you are already on #17!  that amazes me.  it seems like yesterday you told us your story and now look where you are.  i'm so happy for you.  the last 3 will be a memory very soon and you'll be well on your way to healing.

i had T1 cancer of the right false vocal cord.  dx'd 8/27/09.  I had 7000 cGy over 35 fractions.  Lymph nodes received a dose of 5000 cGy over 25 fractions.  my last tx was 10/22/09.  i was 53 when dx'd. the side effect i live with from the rads is I can't swallow well and have to have my throat stretched regularly.  i am always the last one to finish eating and i never finish when i go out because i don't want my company to be waiting on me to finish. Unfortunately, i had a recurrence 2/12 (stage 3) which required a total laryngectomy and neck dissection.  life as a lary is extremely different and was very hard to come to grips with.  i have more problems from the surgery than from rads.  i cannot lift my left up above my shoulder, i cannot turn my hear fully to the left or right, several very big and ugly scars but i've learned to live with all of that.  i'm preparing to get my throat stretched again as water doens't even want to go down my throat and that is a hassle.  that is not a big deal it just doesn't work too long before i have the same trouble again.  overall, tho, i live life everyday and don't let cancer rob me or any more.  its wonderful that you only have to have rads and I pray you don't have long lasting side effects.  i can't wait to hear you rang the bell and i'll do the happy dance for you.  we love to celebrate on this site and that is definitely a great reason to celebrate.  be sure you let us know.  if you have any questions, please feel free to pm me.  i'm usually on here several times a day.

God bless you,

dj

keep going

Donka, well done mate. Keep going. Keep yourself lubricated whislt on pain meds if you know what I mean. G

wmc

It was on vocal cords......

Hi Donka, Mine was supraglottic SSC [Preop] T4,N2c,M0, extending to both submucosally into both AE folds and immobile left true vocal cord with possibable bace of tongue, no cough with asperation. Sever bullous emphysema preclude a laryngeal preservation with surgery or radation. So we decided to do the sugery and remove the tumor and larynx with a modified radial neck dissection on both sides level 2~5 your cut from ear to ear. I really did not have any chose to make,[ other than do nothing] so I now breath through my neck and have a prosthes to talk with but the cancer is gone. NED fo 8 months now. After the surgery it was down graded to T3,N0,Mo, and 86 glands removed. The removal of the vocal cords is major life changing to say the least. I have no smell, all tast has changed, can't hold your breath, and if you bend over within two hours after eating you will loose it. If you cough very hard, it will cause regurgitation so violent it can and will go in your sinus cavity and out your noise. [remember your nose doesn't work any longer] Hard to get cleaned out but it can be done.

I do hope the radation works and saves your vocal cords with out too much damage to them. They do so much more than just letting you talk.  Best of luck

wmc

 

 

donfoo

great news

Sounds like you are progressing very well, almost to the finish line. Getting only 51 grays is a bit unusual, maybe the area radiated was smaller. But I have zero clue how that rad number is calculated. I believe it is an average as dosing is adjusted to different areas.

Hang in there! Don

Ladylacy

Vocal Cord

My husband's cancer was diagnosed the same as yours except his tumor was very large but contained.  He underwent radiation and chemo.  Sadly it didn't get the tumor and he ended up having a complete laryngectomy, neck dissection and reconstruction of his throat due to radiation damage.  Hindsight is that I now wish we had gone to a head and neck specialist first, instead of allowing our local ENT and oncologist my husband was seeing for a rare blood cancer handled his treatment.  I think if we had seen one to begin with that surgery would have been the first option due to the size.  We were referred to a great head and neck specialist when the tumor was found to still be there. 

Another great site for vocal cord cancer is webwhispers mainly because that is the type of cancer the site deals with.  Many people on that site have had your type of cancer for years and years.  In fact a good friend of mine, her second husband had his vocal cords removed over 40 years ago due to cancer, and is now in his 80's.  So it is a curable disease for many.  In our case, sadly my husband developed a second primary and it spread to his lungs.  Also take your pain pills as our doctor explained they will help you heal.  My husband never wanted to take any medication but found that the pain pills really helped him thru treatment.  Keep hydrated as that is very important and do swallowing exercises. 

Wishing you the best -- Sharon

 

 

donka

debbiejeanne said:

wow, Donka, i can't believe

wow, Donka, i can't believe you are already on #17!  that amazes me.  it seems like yesterday you told us your story and now look where you are.  i'm so happy for you.  the last 3 will be a memory very soon and you'll be well on your way to healing.

i had T1 cancer of the right false vocal cord.  dx'd 8/27/09.  I had 7000 cGy over 35 fractions.  Lymph nodes received a dose of 5000 cGy over 25 fractions.  my last tx was 10/22/09.  i was 53 when dx'd. the side effect i live with from the rads is I can't swallow well and have to have my throat stretched regularly.  i am always the last one to finish eating and i never finish when i go out because i don't want my company to be waiting on me to finish. Unfortunately, i had a recurrence 2/12 (stage 3) which required a total laryngectomy and neck dissection.  life as a lary is extremely different and was very hard to come to grips with.  i have more problems from the surgery than from rads.  i cannot lift my left up above my shoulder, i cannot turn my hear fully to the left or right, several very big and ugly scars but i've learned to live with all of that.  i'm preparing to get my throat stretched again as water doens't even want to go down my throat and that is a hassle.  that is not a big deal it just doesn't work too long before i have the same trouble again.  overall, tho, i live life everyday and don't let cancer rob me or any more.  its wonderful that you only have to have rads and I pray you don't have long lasting side effects.  i can't wait to hear you rang the bell and i'll do the happy dance for you.  we love to celebrate on this site and that is definitely a great reason to celebrate.  be sure you let us know.  if you have any questions, please feel free to pm me.  i'm usually on here several times a day.

God bless you,

dj

Thanks dj!

dj, Thank you so much for sharing your story and details with me.  It's been difficult to find accounts of vocal cord cancer, it's side effects, long term issues etc.  It sounds like you've been through a lot over the last 5 years, you must be a very strong person to manage it all with such a good attitude!  Why did they radiate your lymph nodes the first time around, was it just a preventative measure?  

I'm worried I'm actually not getting enough radiation and now that I read how much you had and still had a recurrence it makes me even more nervous.  I think I'll talk to my doc about it at my next appointment.  How did they find it when you had the recurrence?  Was it just through a normal check up or did you have noticeable symptoms?  He also said the best way to detect if the cancer is still there is through visual inspection at my follow up but that makes me nervous too.  I know it's just stage 1 but I'd like to make sure it's taken care of the first time.

Thank so much again, I really do appreciate hearing your story.

 

donka

donka

wmc said:

It was on vocal cords......

Hi Donka, Mine was supraglottic SSC [Preop] T4,N2c,M0, extending to both submucosally into both AE folds and immobile left true vocal cord with possibable bace of tongue, no cough with asperation. Sever bullous emphysema preclude a laryngeal preservation with surgery or radation. So we decided to do the sugery and remove the tumor and larynx with a modified radial neck dissection on both sides level 2~5 your cut from ear to ear. I really did not have any chose to make,[ other than do nothing] so I now breath through my neck and have a prosthes to talk with but the cancer is gone. NED fo 8 months now. After the surgery it was down graded to T3,N0,Mo, and 86 glands removed. The removal of the vocal cords is major life changing to say the least. I have no smell, all tast has changed, can't hold your breath, and if you bend over within two hours after eating you will loose it. If you cough very hard, it will cause regurgitation so violent it can and will go in your sinus cavity and out your noise. [remember your nose doesn't work any longer] Hard to get cleaned out but it can be done.

I do hope the radation works and saves your vocal cords with out too much damage to them. They do so much more than just letting you talk.  Best of luck

wmc

 

 

Thanks wmc

Wow, it sounds like you've been through a ton over the last while, wmc.  I appreciate hearing all of your details too.  Holy smokes it sounds like if they don't get this the first time around I could be in for a very bumpy ride.  Losing my vocal cords scares me to no end.  Especially the issues with eating.  Yours don't sound pleasant at all but 8 months cancer free is awesome!  I'm hoping it stays that way forever for you.

Thanks again for the information and now I know who on the forum I can go to if I have specific questions which helps a lot.  You and dj are inspirational, keep up the fight!

donka

donka

donfoo said:

great news

Sounds like you are progressing very well, almost to the finish line. Getting only 51 grays is a bit unusual, maybe the area radiated was smaller. But I have zero clue how that rad number is calculated. I believe it is an average as dosing is adjusted to different areas.

Hang in there! Don

rads

I think it seems odd too.  I'm going to ask about in on Monday.

debbiejeanne

donka said:

Thanks dj!

dj, Thank you so much for sharing your story and details with me.  It's been difficult to find accounts of vocal cord cancer, it's side effects, long term issues etc.  It sounds like you've been through a lot over the last 5 years, you must be a very strong person to manage it all with such a good attitude!  Why did they radiate your lymph nodes the first time around, was it just a preventative measure?  

I'm worried I'm actually not getting enough radiation and now that I read how much you had and still had a recurrence it makes me even more nervous.  I think I'll talk to my doc about it at my next appointment.  How did they find it when you had the recurrence?  Was it just through a normal check up or did you have noticeable symptoms?  He also said the best way to detect if the cancer is still there is through visual inspection at my follow up but that makes me nervous too.  I know it's just stage 1 but I'd like to make sure it's taken care of the first time.

Thank so much again, I really do appreciate hearing your story.

 

donka

donka, they radiated my lymph

donka, they radiated my lymph nodes to be safe.  to find the recurrence they did a pet scan.  they did one 3 months after tx then one at 6 months.  both showed something.  the first they thot may be lighting up simply due to rads but when it showed up on the 2nd they became suspicious.  plus i was coughing constantly again which was the symptom the first time i had the cancer.  so, they did a biopsy and it showed the cancer was back.  just because it happened to me doesn't mean it will happen to you.  i'm sure your doc is treating you with the amount of rads he feels it will take to kill the cancer.  there was probably something different about mine that called for a higher dose.  i'm sure you are getting what you need.  heck, who knows, maybe i was over radiated.  we just have to trust our docs to know what tx is best for us.  several, if not all, here have been told that the ent will find a recurrence faster than a scan so your doc is right.  i really don't think you need to worry about recurrence.  very few here have had a recurrence.  focus on finishing your tx and healing.  no since in worrying about something that will probably NOT happen :0)

God bless you,

dj