Survivors

EricaA

My mom is having a PET scan on October 16 to make sure all of the cancer is gone after 35 rounds of radiation and 2 rounds of chemo, whoch ended back in late July. I want to know how many neck cancer survivors are here and have things gotten back to normal in your lives? Did you have to make any adjustments? Were you able to return to work? I'm just trying to stay encouraged that things will go back to normal for my mom soon.

blackswampboy

best wishes to your mom
there are loads of survivors, and they'll start chiming in any time now...

I just had my PET scan yesterday, and am not back to normal just yet. but getting there. it takes a while. hang in there, and stay positive. with your help, she'll make it.

EricaA

blackswampboy said:

best wishes to your mom
there are loads of survivors, and they'll start chiming in any time now...

I just had my PET scan yesterday, and am not back to normal just yet. but getting there. it takes a while. hang in there, and stay positive. with your help, she'll make it.

Thanks for the words of
Thanks for the words of encouragement. I hope things return to normal for you soon. Best wishes.

CivilMatt

Mom
Hi EricaA,

Last time I checked I am (still) a survivor. I work part time and I feel good, sleep good, have pretty good stamina, but feel tired. I could take a nap any time of the day (and enjoy it). I am having a blood test done right now to check thyroid (why I am tired).

Your Mom is still pretty fresh from the cooker and needs time to heal. It will all depend on her health and attitude too determine her return to work schedule.

Life for your Mom may be a “new normal” and it may take awhile to get back to the “old Mom”. This stuff kicks your butt. I sometimes walk around looking like I am breakable (go figure).

Best,

Matt

Pam M

CivilMatt said:

Mom
Hi EricaA,

Last time I checked I am (still) a survivor. I work part time and I feel good, sleep good, have pretty good stamina, but feel tired. I could take a nap any time of the day (and enjoy it). I am having a blood test done right now to check thyroid (why I am tired).

Your Mom is still pretty fresh from the cooker and needs time to heal. It will all depend on her health and attitude too determine her return to work schedule.

Life for your Mom may be a “new normal” and it may take awhile to get back to the “old Mom”. This stuff kicks your butt. I sometimes walk around looking like I am breakable (go figure).

Best,

Matt

Breakable, Indeed
Funny you should say that, Matt - I recently looked at some pictures of me that were taken shortly after treatment ended, and realized that after a lifetime of wishing I could look like my mother in her "prime"(beautiful), I finally looked like her in the pictures, but it was the post-COPD onset, "sick" mother I looked like - there was an oddness there, and something in the eyes that had never been me. I didn't look bad, just odd. I no longer have that look.

In some ways, I made great strides toward becoming "normal" pretty quickly. Others are coming more slowly, but almost three years since I was diagnosed, I continue to make physical improvements, and most of the ways that I'm different aren't very noticeable to people around me.

Skiffin16

Abi-Normal..
Hi Erica...

I'm also on of those survivors...STGIII Tonsil Cancer in January 2009. I wen through the chemo and rads, finishing up June 2009...clean and clear since.

As you'll hear, we are all different and heal, recover, and and recoup on ifferent levels and time tables.

Myself, I had it fairly easy during and after treatment than some, an a few ha it even better than I did.

If you look at my expressions and photos, you'll see that my life is pretty much back to normal for me...

Abi-Normal..., LOL

I have a sense of humor that I carried into treatment, an has followed me through recovery. Mostly enjoyed most by myself at times, LOL...

Anyways, attitude, humor, compassion and sensitivity to others are huge..both in my life and especially during treatment and recovery.

I'm sure your Mother will come out better than you and even maybe she expected.

Best,
John

Jimbo55

Another Survivor
I had BOT stage 4, which was treated with 35 rads and 3 cistplatin sessions. I am 2 years out and my life is pretty much the same as it was pre-cancer days. I returned to work part time about 2-3 weeks after treatment finished and full time about 1 month later. I think a key after treatment is to ease into things, whether it be work, exercise or whatever. If you push yourself too hard, it will knock you on your butt for a few days.

I didn't really have to make any adjustments other than drinking more water and chewing more gum. Food taste has returned, strength and stamina are back. Life is good.

One note of caution: I had my first PET/CT scan at 6 months and a few hot spots showed up on it. A follow up PET/CT 3 months later also showed the hot spots. Finally the hot spots disappeared on the next scan. There were definitely some anxious moments during that time. But with the help of the great folks on this board, a little research and getting 2nd opinions, it was finally determined that it was probably just residual activity from the radiation treatments. Head and neck cancers are known for showing false positives on PET/CT scans soon after treatment.

Hope your Mom's 1st Pet scan will be clean! Cheers.

Jimbo

Mikemetz

The "New Normal"
I hope your mother gets a NED scan on 10/16, but don't be surprised or worried if some lingering 'hot spots' from the rads show up. That is typical, as it was in my case and for many others. It took until my second scan to get the "all clear" sign.

Few people get fully back to normal after HNC treatments--the side effects from treatments can be felt for a long time, and some side effects don't ever go away fully. But, that's not to say your mother can't have a great life as a cancer survivor--she'll just have to figure out what she can and can't do and live a "new normal" life from here on out. I made a "cancer revenge" list after my first NED scan--it had all the things I wanted to get back in my life after the months of treatments and recovery. I have checked off almost every item on that list, and am still working on the rest of them. I know I won't be able to do everything on that list again, but it sure feels good to get back what I have.

Best of luck to your mother and you as her caregiver.

Mike

EricaA

Mikemetz said:

The "New Normal"
I hope your mother gets a NED scan on 10/16, but don't be surprised or worried if some lingering 'hot spots' from the rads show up. That is typical, as it was in my case and for many others. It took until my second scan to get the "all clear" sign.

Few people get fully back to normal after HNC treatments--the side effects from treatments can be felt for a long time, and some side effects don't ever go away fully. But, that's not to say your mother can't have a great life as a cancer survivor--she'll just have to figure out what she can and can't do and live a "new normal" life from here on out. I made a "cancer revenge" list after my first NED scan--it had all the things I wanted to get back in my life after the months of treatments and recovery. I have checked off almost every item on that list, and am still working on the rest of them. I know I won't be able to do everything on that list again, but it sure feels good to get back what I have.

Best of luck to your mother and you as her caregiver.

Mike

Thank you all for sharing
Thank you all for sharing your experiences and for the encouraging words. I will let everyone know what her test results are. I am really anxious, yet hopeful at the same time.

Tim6003

EricaA said:

Thank you all for sharing
Thank you all for sharing your experiences and for the encouraging words. I will let everyone know what her test results are. I am really anxious, yet hopeful at the same time.

Hi Erica ..
I am 8 months out clean of cancer from stage III base of tongue. I had radiation and Erbitux, no surgery.

I "feel" like I took a little longer to recover, but I think we all get impatient. I was back to work March 2012, I finished my last rad January 20, 2012. The radiaton and erbitux did a number on me. I was off all pain meds by June 2012 (on that note I did stop and start again on the pain meds due to off and on pain....it happens, but will go away usually). I had a feeding tube in my stomach from start of treatments (Nov. 2012) till June 2012. That is now gone and I can pretty much eat what I want. Taste is 90% back I believe...can't do spicy foods still. Some fruit still burns my throat (bananas especially).

I am now cutting wood with a chainsaw for our home, getting ready for the winter here in Idaho, work full time and feel great. I did recently find out I had a hernia so I have to step back and get that fixed....

I don't have a lot of saliva, drink with every bite still....I do sleep okay, just get up to use the restroom a lot ...I don't find myslef tired anymore like I used too...but when I did I would just take a nap (not like me to take nap in the middle of the day) ...

There are some adjustments we all make, each person is different, bottom line is it's better than the alternative ...at least for me

Best,

Tim

hwt

EricaA said:

Thank you all for sharing
Thank you all for sharing your experiences and for the encouraging words. I will let everyone know what her test results are. I am really anxious, yet hopeful at the same time.

Erica
My best to your Mom. I was able to return to work about 6 maybe 7 weeks after my last tx. Since week 6 I have had plenty of energy with just an occasional low day. It's now 4 months after tx. I have had 1 clear CAT scan w/contrast and will have PET in October. Short of my tongue having a burning sensation sometimes and not having some of my lower teeth replaced yet, I actually feel quite good. Once your Mom's energy level returns, you'll start to see a big difference. Before I got mine back I forced myself to take very short walks each day, I think that helped.

PatDarago

Best wishes
Things will get better,I had BOT cancer in Jan. 2010 . 36 treatments of radiation and 2 full weeks of chemo. I was on a feed tube for 8 weeks during treatment and loss 35 pounds . I was off work for 5 months and went back in July 2010 full time. The side effects ( dry mouth,taste,swallowing) are hard to deal with but I am feeling ok ,don't think I will ever feel like I did before the cancer , but my last cscan in Jan was negative . I am eating just about everything I want( no spicy or hard to chew food) and am alive!!!!!! hope things work out for your mom

Grandmax4

I, too, consider
myself a survivor, found out in October 2011, I had a cancerous growth on my epiglottis. November 2, 2011, di vinci robotic surgery removed it, lumpnodes came back negative, so I was blessed not to need chemo or radiation.
January 2012, I re-started baby-sitting my 4 year old Grandson, since my surgery and healing, I've found it's much more fun to play with him, go to the park, library, drive him to pre-school, just in general, full attention...the housework can wait. I'm kinda ( or was ) a neat freak, but not anymore.
My diet is limited, but I can swallow and taste what I do eat, so it's all good. I lost 50 lbs, but have regained 20 of it.
I feel good, have lots of energy, take time to smell the roses...life is precious and happy.
My Husband, grown Son and Daughter, their spouses and kids are my life..they have been my "rocks" as I'm sure you are for your Mom.
Take care of YOU too, your Mom will find her new normal

Skiffin16

Tim6003 said:

Hi Erica ..
I am 8 months out clean of cancer from stage III base of tongue. I had radiation and Erbitux, no surgery.

I "feel" like I took a little longer to recover, but I think we all get impatient. I was back to work March 2012, I finished my last rad January 20, 2012. The radiaton and erbitux did a number on me. I was off all pain meds by June 2012 (on that note I did stop and start again on the pain meds due to off and on pain....it happens, but will go away usually). I had a feeding tube in my stomach from start of treatments (Nov. 2012) till June 2012. That is now gone and I can pretty much eat what I want. Taste is 90% back I believe...can't do spicy foods still. Some fruit still burns my throat (bananas especially).

I am now cutting wood with a chainsaw for our home, getting ready for the winter here in Idaho, work full time and feel great. I did recently find out I had a hernia so I have to step back and get that fixed....

I don't have a lot of saliva, drink with every bite still....I do sleep okay, just get up to use the restroom a lot ...I don't find myslef tired anymore like I used too...but when I did I would just take a nap (not like me to take nap in the middle of the day) ...

There are some adjustments we all make, each person is different, bottom line is it's better than the alternative ...at least for me

Best,

Tim

Cutting Wood - Hernia
Hmmmm, something wrong with that picture Tim.

You're going to be causing yourself more problems down the road if you don't take it easy or get a little help.

JG

CajunEagle

A survivor
Been through with treatment (6 rds chemo....35 rads) since June,2009. Life is fairly normal (if there ever was a thing) with exception of dry mouth and neuropathy. Making eating adjustments and alot more excersises. Said heck with work, and just retired and do volunteering. Everyone is different and completes the task of surviving at different rates, but we all mostly get there.

Larry

EricaA

CajunEagle said:

A survivor
Been through with treatment (6 rds chemo....35 rads) since June,2009. Life is fairly normal (if there ever was a thing) with exception of dry mouth and neuropathy. Making eating adjustments and alot more excersises. Said heck with work, and just retired and do volunteering. Everyone is different and completes the task of surviving at different rates, but we all mostly get there.

Larry

Thank you all. I'll keep you
Thank you all. I'll keep you posted on my mom's results.