Two Years NED!!!

Chicklette

Hello Everyone! 

I dont check in often anymore and I’m certainly not here to brag, but I know when my husband was first diagnosed, I loved hearing success stories.  Well, my husband is two years out from treatment and just got a clear scan and scope!  (He had SCC HPV+ with an unknown primary).  He had gone through 8 rounds of chemo (carboplatin) and 37 doses of radiation to his neck.  Treatment was tough, but he made it through without a feeding tube.

I hope this will give encouragement to those just being diagnosed or in the midst of the battle.  Keep on keeping on and don’t lose hope!

Chicklette

Sabrina23

Congrats to you and your husband so happy for you

HI Chicklette,  It is great to hear the good news always gives everyone encouragement that it does get better and NED is just around the corner.  So happy your husband is NED after two years out that is really great!  Prayers to you all to keep always NED as well as prayers to all on this forum for NED outcomes.  God Bless All!

ERomanO

Congrats!

Wow!  Eight months of chemo!!!  That had to have been rough, but the outcome was worth it. Here's to many more NEDs!

Chicklette

Sabrina23 said:

Congrats to you and your husband so happy for you

HI Chicklette,  It is great to hear the good news always gives everyone encouragement that it does get better and NED is just around the corner.  So happy your husband is NED after two years out that is really great!  Prayers to you all to keep always NED as well as prayers to all on this forum for NED outcomes.  God Bless All!

Thank you

Chicklette

ERomanO said:

Congrats!

Wow!  Eight months of chemo!!!  That had to have been rough, but the outcome was worth it. Here's to many more NEDs!

Thank you

Only 8 weeks . Once a week for 8 weeks then radiation 5 daus a week.

ERomanO

Chicklette said:

Thank you

Only 8 weeks . Once a week for 8 weeks then radiation 5 daus a week.

Oops! I must've read "rounds"

Oops! I must've read "rounds" as "months".  Still, 8 rounds as compared to the 3 rounds that I and many others had would not be a walk the park.

Logan51

Chicklette

I was also an unknown Primary, and with what you began this thread with sure caught my eyes. Checked your Profile page to see he had two forms of Chemo, and the Cisplatin was "low dose," with concurrent Rads. Do you have the Rad Dr.'s final report? If so, please look at the cGy/Gy total and location(s) applied for me, AND him. You can Private Message me with what you find.

You mention that the Rads were applied to his neck. I was NPC, so they also zapped me from the eyes down, but not as much in the facial area as my throat. Hence, I had major mouth and tooth issues your Hubby probably does not; however, I also had neck issues within a couple years, and am now two weeks short of 10-1/2 years out w/scar tissue problems from the Rads as a result of 60 Gys to my right side and upper-left, and 68 to my lower-left. Lord knows I don't want to spook you, but your response to the amount of Rads applied and to where might help me advise you on follow-ups with your Rad Dr. to limit/lessen the scar tissue damage, if possible. I sure do not want your Hubby to experience what I am now, and am hoping my input may be beneficial to him. I was zapped in 20 places/session 31 times, then the final 4 were only to my neck. The Rad Dr. did tell me they have a new machine, so maybe my type of Rads were different than his, I hope. 

Chicklette

Logan51 said:

Chicklette

I was also an unknown Primary, and with what you began this thread with sure caught my eyes. Checked your Profile page to see he had two forms of Chemo, and the Cisplatin was "low dose," with concurrent Rads. Do you have the Rad Dr.'s final report? If so, please look at the cGy/Gy total and location(s) applied for me, AND him. You can Private Message me with what you find.

You mention that the Rads were applied to his neck. I was NPC, so they also zapped me from the eyes down, but not as much in the facial area as my throat. Hence, I had major mouth and tooth issues your Hubby probably does not; however, I also had neck issues within a couple years, and am now two weeks short of 10-1/2 years out w/scar tissue problems from the Rads as a result of 60 Gys to my right side and upper-left, and 68 to my lower-left. Lord knows I don't want to spook you, but your response to the amount of Rads applied and to where might help me advise you on follow-ups with your Rad Dr. to limit/lessen the scar tissue damage, if possible. I sure do not want your Hubby to experience what I am now, and am hoping my input may be beneficial to him. I was zapped in 20 places/session 31 times, then the final 4 were only to my neck. The Rad Dr. did tell me they have a new machine, so maybe my type of Rads were different than his, I hope. 

I don’t know ...

Hello.  I really don’t know what the gys were.  I was thinking 70 on the left and not as much on the right.  They avoided the jaw on the right, but not the left.  They also avoided the larynx.  We went to Mass General in Boston so it was a state of the art hospital with the newest technology.  His rad doctor is the chief of medicine in his department so he had the best care possible. He was not a candidate for proton only because the unknown primary.  He started out with the cisplatin chemo, but it was causing ringing in the ears so they switched to the  Carboplatin.  My hubby also sees his chiropractor regularly and is just starting massage therapy.  We have been advised that if he keeps things moving, he will have fewer problems in the future.  I know that radiation is the “gift that keeps on giving” so we live and enjoy life one day at a time.

CivilMatt

I had Rocky Road ice cream last night. It was great!

Chicklette,

I remember you.  In August of 2017 we were speculating on what your husband’s final outcome with regards to taste, dry mouth, coughing, etc. would be.

Well, how did he end up?  I hope he is classified as “very good” in the H&N playbook.

Matt

Chicklette

CivilMatt said:

I had Rocky Road ice cream last night. It was great!

Chicklette,

I remember you.  In August of 2017 we were speculating on what your husband’s final outcome with regards to taste, dry mouth, coughing, etc. would be.

Well, how did he end up?  I hope he is classified as “very good” in the H&N playbook.

Matt

Thank You

Hi Matt

Your post made me smile.  My husband is doing wonderful with very few side effects.  Taste, swallowing and voice are all backnto normal. He has a little dry mouth, but not too bad.  He also has some stiffness in his neck and shoulder, but honestly, he had those issues before the cancer so we don’t know if it’s radiation damage or not.  So, all in all, new normal is pretty much old normal with a new appreciation for each and every day.

Clon

Me too

Hi Chicklette,

I started the same time frame as your husband 5/1/17 and had the same treatment. 35 rads and 7 rounds of chemo (the last one carboplatin because of the neurapothy and ringing in the ears) with the primary unknown.  I enjoyed following along because I knew I was doing okay as long as my symptoms were similar to his.

I recently had my all clear 2 year scan too. What a great feeling.  I still have trouble swallowing because the food gets stuck going down but that is my only real residual efect other than getting tired easy.  

Thanks for the update and prayers for many more years of good health.

Sabrina23

Clon said:

Me too

Hi Chicklette,

I started the same time frame as your husband 5/1/17 and had the same treatment. 35 rads and 7 rounds of chemo (the last one carboplatin because of the neurapothy and ringing in the ears) with the primary unknown.  I enjoyed following along because I knew I was doing okay as long as my symptoms were similar to his.

I recently had my all clear 2 year scan too. What a great feeling.  I still have trouble swallowing because the food gets stuck going down but that is my only real residual efect other than getting tired easy.  

Thanks for the update and prayers for many more years of good health.

Great News all around

Congrats to you as well Clon on your all clear 2 year scan!  Great News all around really is a good feeling and brings such inspiration and hope to all.  Thanks so sharing 

God Bless you and all on this forum and may we all be NED!

Chicklette

Clon said:

Me too

Hi Chicklette,

I started the same time frame as your husband 5/1/17 and had the same treatment. 35 rads and 7 rounds of chemo (the last one carboplatin because of the neurapothy and ringing in the ears) with the primary unknown.  I enjoyed following along because I knew I was doing okay as long as my symptoms were similar to his.

I recently had my all clear 2 year scan too. What a great feeling.  I still have trouble swallowing because the food gets stuck going down but that is my only real residual efect other than getting tired easy.  

Thanks for the update and prayers for many more years of good health.

Awesome!

That‘s wonderful news!  Congratulations on 2 years NED! 

Chicklette

Clon said:

Me too

Hi Chicklette,

I started the same time frame as your husband 5/1/17 and had the same treatment. 35 rads and 7 rounds of chemo (the last one carboplatin because of the neurapothy and ringing in the ears) with the primary unknown.  I enjoyed following along because I knew I was doing okay as long as my symptoms were similar to his.

I recently had my all clear 2 year scan too. What a great feeling.  I still have trouble swallowing because the food gets stuck going down but that is my only real residual efect other than getting tired easy.  

Thanks for the update and prayers for many more years of good health.

Thyroid

My husband said to ask if you have had your thyroid checked.  That can sometimes take a beating and can cause fatigue.  His thyroid is showing signs of slowing down so we are keeping an eye on it.  Just something to consider. :-)

Clon

Chicklette said:

Thyroid

My husband said to ask if you have had your thyroid checked.  That can sometimes take a beating and can cause fatigue.  His thyroid is showing signs of slowing down so we are keeping an eye on it.  Just something to consider. :-)

Thyroid

Yes, my thyroid got beat up pretty well.  I am on thyroid medicine now, but thankfully that is the only med I am taking now.  Considering all, it is a minor inconvenience.

slingshot2019

Chicklette, wonderful news

Chicklette, wonderful news about your husband. 

Chicklette

slingshot2019 said:

Chicklette, wonderful news

Chicklette, wonderful news about your husband. 

Thank you

Thank you

big G

Chicklette said:

Thank you

Thank you

NED!

Congrats on the NED! 2 years is a major milestone hoping you have many more just like that.

Chicklette

big G said:

NED!

Congrats on the NED! 2 years is a major milestone hoping you have many more just like that.

Thank You

The doctor said that after twpnyears, the chance of recurrence is very low. . Next checkup is in six months.