HPV 21 months out

dwp155

Hey guys I am blessed to be cancer free 21 months out.  Tonsil, base of the tongue, and 4 lymph nodes.  I went through the standard 36 radiation, 6 chemo in 6 weeks and have progressed better than the doctors expected.  Question for you, do you ever get back to normal?  Granted I'm 64, but I still haven't recovered my energy level back.  Given the return of saliva, most of my taste I feel like I'm whining but I am just curious.

Don

wbcgaruss

Hey dwp155 Congrats

On being NED 21 months out and I wish you many more. I don't know of anyone on H&N that ever went back to their normal (original condition) after their treatments. Some did come close with almost no side effects. Others carry a lot of baggage but they are still kicking and making the best of it. I don't think anyone gets off  Scott free we all seem to have some leftover from treatment. You sound like you are one of the lucky ones and have less than most. This recovery is long term, it takes time. Congratulations and God Bless

ProustLover

Congrats on return of saliva and taste!

Have they checked out your thyroid?  I believe testosterone can also take a hit after chemo and radiation.  If either of those readings are low, they can prescribe something, and energy level might get a boost.   If levels are normal, maybe it'll just take a bit longer to feel some of the old get up and go.  Plus, you can't minimize the role of diet and exercise when it comes to fatigue and well-being.  It's really good to hear that you're doing as well as you are.  

CivilMatt

once in a while

Dwp155,

Yes, there are some H&N members who claim to be back to normal and some even better than before, I guess that may be called normal-plus or even super-normal.. There was one guy (recently) who is a big runner and since treatments he has recorded his fastest time ever. I think a few of the better-than-old-normal may be English, but maybe not, I do claim to have radiation brain (a little) and I may be un-correct in what I am saying.

You have recovered well after going through tonsil, base-of-tongue and 4 lymph nodes (all) needing radiation and chemo treatments. Wow, you are a true survivor in the ranks of the H&N elite.

To be fair, after you mentioned having the return of your saliva and most of your taste, you do indeed sound like you might be experiencing a watershed moment but I am not curious enough to go all the way to say you are whining. Instead, I pulled out my H&N dictionary and looked up some common definitions:

Whining: A H&N member who uses a high-pitched and long drawn-out voice to describe post-cancer conditions which are deemed as “trivial” to veteran H&N members. 

Example:  “Will I always need to drink water?  That is too much trouble and I do not want to do it.”

Delightful Soul:  A H&N member (generally around 64 years old) who is happy with their post-cancer condition(s) and wish to share their good fortune with all the H&N audience.

Well, I guess you are a Delightful Soul and I am happy to include my official congratulations to you on your NED.

Now, on with the day!  I am going outside to finish trimming back the Marion Berries to prepare  for next year’s crop and mow the yard, but first I may steal away to the farmers market and pick-up some cinnamon rolls.

Matt

 

 

dwp155

Thanks!

Perspective is the answer.  I am blessed!

phrannie51

I’m 69....

....I was 61 when I first was diagnosed. Here’s where we older folks get lucky compared to our younger counterparts. Hmmmm....do I tire easier because I went through cancer treatment, or because I’m older?  Do I forget things..... do words and names escape my grasp, because I have chemo brain, or is it my age??  I jump on age every time.......I have friends my age who’ve never been sick, their memories suck as bad as mine....and chances are, I take fewer naps.

p

JBBW

Good News is always good

dwp155 - 21 months is great and it's good to hear about.  Check with the doctors about Thyroid tests.  Those can be affected by radiation like what you had even a few years out.

CivilMatt - Nice definitions there.  I like them. 

Thanks,

-JBBW

Logan51

Don

You are not whining. You did what many others have and should- asked a question based on other's experience, post-tx.

In my case, I returned to work 3 months after my last Rad session in April. As a shop Inspector, I was constantly getting paged on the intercom and on my feet in a factory a block in length, and did not really notice an impact on my energy level. But I turned 55 back in November of 2009. I was made lead Inspector on 2nd shift in 2012, on meds for the sides of my neck, and gradually noticed a drop in energy level to the point I was laying down on the Inspection floor with a bunch of clean shop towels for a pillow taking a 1/2-hour nap during lunch break by early-2014. And now that I'm almost 65 I take a regular afternoon nap due to my energy level. SO, age just might be the factor in play. And JBBW might be right about the Thyroid, which affects a lot in the body.

And congratulations.

ERomanO

Congratulations on your 21

Congratulations on your 21 month NED!!  That's what we like to hear!  "Back to normal" is relative.  If your saliva has returned along with your taste, then you're doing better than most.  My dentist said he's had throat cancer patients that are bone dry and I at least have some saliva.  Energy level is also relative to where you were prior to treatments.  I don't think I ever felt totally run down since my treatments, but I am now, at age 63, making a conscious effort to be active.  I've been participating in 2 - 60 minute fitness classes each week since April and have gone on a few 30 mile trail rides on my bike (along with several 15 milers), but I find that I have to take a nap almost every day.  Since I'm retired it's no big deal and has just become a part of my daily routine.  A friend of mine that had prostate cancer said it takes about 2 years to no longer think about your cancer experience.  But I don't think that's the case with H&N cancer.  Seems like there will always be something to keep you reminded of it (like daily fluoride treatments), and that is also part of what prevents you from feeling totally normal, in my opinion.

CivilMatt

JBBW said:

Good News is always good

dwp155 - 21 months is great and it's good to hear about.  Check with the doctors about Thyroid tests.  Those can be affected by radiation like what you had even a few years out.

CivilMatt - Nice definitions there.  I like them. 

Thanks,

-JBBW

"It is (was) my thyroid"

JBBW,

Here is the graph I made-up of the results of my “thyroid tracking” from right after post cancer to around 21 months post.

Here is a response I posted to a H&N member on August 30, 2014 (5 years ago) about my thyroid. It really is not that overall important to the conversation, I just wanted to include it.

“Ptom,

My doctor tested my thyroid regularly and after 2 years of decline I was prescribed meds (Levothyroine).  He then monitored me for dosage until he liked my numbers.

Rads to my bot is my idea of a “smoking gun”.

Matt”

The American Association of Clinical Endocrinologists (AACE) recommends 0.3 to 3.0 mIU/mL as the appropriate normal range for TSH. In older adults.  Some H&N members see much, much higher TSH levels than I did, and many monitor additional items.

Matt

 

AnotherSurvivor

I had Stage III HPV Tonsil,

I had Stage III HPV Tonsil, got 35/6, last was in Jan '17.  Short answer is yes, with the standard it depends clause.  My saliva has gone thru a variety of cycles, but today is thin, very adequate, with a bit of salt.  I do a lot of xylimelts, which when I started didn't work at all.  I can go for hours without one, but seem to usually have one in, have pondered if they are maybe addictive.  My ENT says he sees slow but steady improvement that goes on for years in a lot of his patients.  I seem to be one of the fortunate.

Taste is mostly back to normal with some odd quirks.  Korean Kimchi is out, as is single malt scotch. That was true early in recovery, has never changed.  For some things I am more taste sensitive.  

  I lost nearly 50 pounds, that I wanted to, regained 10 on doctors' orders, went most of last two years appetite free.  That is no longer the case, but I am determined to fight every pound.  This past week has not gone well, I face a week of salads, no beer or cocktails.

Part of the weight gain is a lot of outdoor exercise which stimulates appetite..  Bought an e-bike, road somewhere above 100 miles last week, but while my knees bless me my butt is just in accumulation mode.   

I would say never give up hope.

 

 

Soldier of Love

Thinking about skipping the Radation and Kemo

Hello,

I also have tonsil cancer that matizied to the side of my neck.  Just finished surgery and now looking at post-treatment of RAD & Kemo. It's been one week and I dont know if I want to put myself through what everyone esle claims.  I wanted to try to go without but not sure of anyone else has done this but it would be nice to hear from anyone. I wantto get off these Meds like OXY, and stool softner, steriods, and some others.  Today I tried not takinf the meds but it hurt so bad.  CAn also anyone tell me if therey had extreme pain this long.  My toung is so swollen that it like a watermellon.  can't talk or eat at all.  Please help

 

Thanks

wbcgaruss

Follow Up Treatment

I believe if follow up Treatment like radiation and chemotherapy are recommended by your doctor I would take them. I think it's what they consider mop up Treatment to get any errant cancer cells that may still be there. You have gone through this much of the Treatment and you have had quite an operation so finish the rest. Just my opinion. Hang in there your pain will eventually subside but for now stay ahead of it. And eventually you will be able to get off all your meds. Your  tongue swelling will eventually go down also. Be patient recovery for us cancer folks is measured in weeks and months not days and weeks God bless take care 

Sabrina23

wbcgaruss said:

Hey dwp155 Congrats

On being NED 21 months out and I wish you many more. I don't know of anyone on H&N that ever went back to their normal (original condition) after their treatments. Some did come close with almost no side effects. Others carry a lot of baggage but they are still kicking and making the best of it. I don't think anyone gets off  Scott free we all seem to have some leftover from treatment. You sound like you are one of the lucky ones and have less than most. This recovery is long term, it takes time. Congratulations and God Bless

Congrats on making 21 months out and many more to come

God Bless and Keep you in his care - congrats on being 21 months out cannot wait to be able to write that as well.  I am going on 4 months out.... my recent Cat Scan was clear. I agree with Russ the recovery is long term and takes time but no matter what the faith, hope and love you find on this board and its members is what gets you thru.  I feel totally blessed to be a part of this forum and honored to meet everyone and read everyone's thoughts and journeys. 

OKCnative

I'm two years post stage 3

I'm two years post stage 3 BOT with lymph nodes effected. Did no surgery, and the standard chemo and rads.

I'm 100% back to normal - unfortunately in all ways - I've got about 15 pounds I need to loose.

Taste is 100%, energy 100% and all is good with life.

Staying active and having a healthy attitude did it for me.

debbiel0

Soldier of Love said:

Thinking about skipping the Radation and Kemo

Hello,

I also have tonsil cancer that matizied to the side of my neck.  Just finished surgery and now looking at post-treatment of RAD & Kemo. It's been one week and I dont know if I want to put myself through what everyone esle claims.  I wanted to try to go without but not sure of anyone else has done this but it would be nice to hear from anyone. I wantto get off these Meds like OXY, and stool softner, steriods, and some others.  Today I tried not takinf the meds but it hurt so bad.  CAn also anyone tell me if therey had extreme pain this long.  My toung is so swollen that it like a watermellon.  can't talk or eat at all.  Please help

 

Thanks

I have two scenarios for you.

I have two scenarios for you. I am 2 yrs out from 35 rads - 3 chemo. I am doing pretty good now.  had a feeding tube for 11 months, ran a full course of fentanyl, morphine, and anything else they would give me for 5 months. Took over a year before I could eat any meal that resembled "normal".. 

My husband is 7 weeks out of treatment, for the same HPV+ tonsil cancer. He has never missed a meal, never had to take so much as a tylenol. Admittedly he did want soft food for two days. He had an extreme rad burn on his neck, lthat we were told could take up to,three weeks for the pain to subside, it lasted 7 days. Nothing but a success story.

So please, keep going! You never know how quickly your body will or wont react. Just know that for most of us, it's a long journey, but well worth it in the end. Or you could be one of the lucky ones that turns that magical corner sooner that others.  We will be here to,support you, no matter which way your body treats you. Jealous if its a quick fix, but will cheer you on either way!