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New to the group...looking for advice and counsel.

JOSEPH L
Posts: 3
Joined: Sep 2012

I am finished with 35 radiation treatments, 3 chemo and a few hydration follow ups....i am now cancer free and am looking for some fellowship and advice on what happens next..i went through the hard parts but now i wonder how long it will take to be " normal" again? is that really possible? My saliva glands dont seem to work, my taste buds seem not be working....you all must know what i am going through..i have lost 50 pounds and that's not so bad but i need to lose my g-tube and get on with life....will it take a year? Wil it take longer? My real problem is that I have no one to discuss the situation with...no advisors and no one who has the same thing (this type of cancer) to discuss it all with...can i get some help with this? I would love any type of response and dialog...thanks!!

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

Hate to see someone without a reply. But hang in; someone that lived thru your experiences will show up. I think it would help if you state the (approximate) location of your tumor. I had advanced laryngeal cancer; but I'm betting your cancer is somewhere in your mouth. So my experiences would not be "right" for you. Rick.

fisrpotpe's picture
fisrpotpe
Posts: 1341
Joined: Aug 2010

welcome to the place to be for information, support and caring family.

congrats on being a survivor, you have gone thru the hell part of your journey. now it recovery.

for me all i can say is the day i was told i have cancer was the start of my "new normal". the new normal is fun.

is it possible that you can get back to the old normal, yes anything is possible.

not sure how far out of treatment you are so are. problem everyone seems to have and it's normal and that is recovery is not fast enough for anyone fighting the fight including their caregivers. you may hear this alot in the posts to follow but it is true, "it will most definitely get better". the treatments you been thru in the recovery phase is not like having the bad flu and after 3-5 days you feel well. everyone reacts differently to all the drugs and radiation so everyone's recovery is different. I recently watched in person a friend who after 5 weeks was eating really well, back to work full time at 8 weeks, and 10 weeks eating about anything he wants. the g tube for him was removed at 2 months. i must say this, he is the fastest i have seen in the recovery phase. I have seen another close friend take 9 months to go back to work. so the time tables are all over the place.

it will get better slowly. kinda like taking two steps back and one step forward for a while and then before you know it your on the forward march to your life of fun "NEW NORMAL"

Congrats mr. survivor, looking for many years of survivorship from you.

john

ratface's picture
ratface
Posts: 1251
Joined: Aug 2009

Hi Joe and welcome. I also lost a much needed 50 pounds. I was BOT stage 4 with a selective neck disection, 39 rads, and 3 rounds of chemo/cisplatin for your comparison. The peg tube was removed at the 9 month mark. Recovery will be all over the spectrum to some degree. Typically a year will work out most of the bugs. Your body is still recovering internally to get blood counts back on track. Your thyroid is still deciding on it's level of function after being bombarded with radiation. Most of your saliva and taste buds will return within six months??? Now is a good time to be somewhat guarded with your health. You might consider a mild exercise program to help in the rebuilding process and new you. Check with your GP for any vaccinations that may be prudent. The shingles shot comes to mind and I know there was one or two others. Read through the superthread up top for lots of relevant material and welcome to our world.

Hard12Find
Posts: 208
Joined: Sep 2012

Joseph,
Welcome, and congratulations on the NED!!!!!!! I will be starting my treatments next Monday and can't wait to be in your shoes. Anyway this site has a wealth of information, and I know there are a lot of posts about life after treatment, and I know you will get a lot of response to this post as well. Can I ask where your cancer was and at what stage? I am so thankful for those of you who have gone before, it takes some of the fear away, and gives me courage to fight. May God keep you cancer free!

Skiffin16's picture
Skiffin16
Posts: 8096
Joined: Sep 2009

Welcome Joseph....

If you have a bit of Abi-Normal in you, it'll return fairly quickly, LOL...

Just teasing a little....

I also came out of chemo & radiation like you, no taste, no saliva...

Each of us are different and heal, recovery differently.

But I can pretty much guarantee based on my time here, and personal experience that you'll get most of both back.

My self I was in the sip of water every bite of food and every sentence mode for awhile. Sweet took the longest for me in coming back, nearly two years.

But, at just a few months out, I had enough to survive on if it never got better.

It did, at around two years or so, I had around 100% of my taste back and nearly 95% of the saliva return.

So hang in there, you'll get there, I can pretty much guarantee it.

Now for me, I am a bt abi-normal....

I think that my "new" normal, is actually my "old" normal, just with a few scrapes and bruises.

Here is the link to the SuperThread mentioned...tons of great info for newbies and old timers here like myself....

SuperThread

By the way, I was STGIII SCC HPV+ Tonsils, and a lymphnode... Did my time with Cisplatin, Taxotere, 5FU, Carboplatin and the 35 daily rads...

That was all back in the first have of 2009, clean and clear since.

BTW, if you want to see if life returns to normality (for me that's a stetch)...., check out my expression photos.

Best,
John

Tim6003's picture
Tim6003
Posts: 1497
Joined: Nov 2011

Glad you are past the worst of it (don't know how far out you are from your last treatment)....

...my worst was from the day after treatmet till about 6 weeks. The pain, the mucus, uggh. I was on 6-7 narco a day and wore two Fentynal patches....was 100% fed via feeding tube and had no taste or ability to swallow. I kept my feeding tube for four months.

I remember thinking to myself "why is it taking so long and why am I at the back of the bus getting well" .....now looking back I realize I was not at the back or the front ..just on my own route; everybody is on their own route. Just know this, it will get better when it gets better and it will happen. :)

Take a look at the picture of my neck burns on my expressions page if you like. That was the hardest part for me besides the mucus.

I pray you heal quickly....but more I pray you never have to deal with cancer again!

Keep us posted ...

Tim

I'd like to add that now at 8 months post treatment I just spent the last week working slowly but diligently on cutting firewood with my chainsaw and then splitting that same wood. I am quite sore, my mucslces are not where they used to be, but spending that time with my three youngest sons (ages 5-11) and going back in the woods to get that wood ...I would go through treatments 10 times to have the time with my family I have had. I firmly believe had I not had treatments, prayers and the family / friends I have I would not be here today or would certainly be close to the end.

Alomst 1 cord of wood down ...and only need 3 more cords :)!!!! Yee Haw!!

blackswampboy's picture
blackswampboy
Posts: 341
Joined: Jul 2012

this is the place to come for support.
if I may inquire, what type/stage cancer did you have?

oh yeah. I lost 40 lbs., and that was bad.

Greend's picture
Greend
Posts: 679
Joined: Feb 2010

You are with a group that has "seen it all" and appreciate what you have been through and the things you have yet to encounter. I lost 100 lbs but did not have a tube during treatments - I don't think they had been invented yet :>) I never regained my saliva and while my taste came back it never was the same. As stated above - welcome to your "new normal", you will adjust in time.

CivilMatt's picture
CivilMatt
Posts: 3013
Joined: May 2012

Hi Joseph,

Welcome fellow H&N warrior, you are amongst friends here.

So you want to go back to being “normal”. Well, I am surprised nobody told you about the super secret “body normal” reset switch. First you need a nice quiet place where other normals can’t see you. Then you carefully reach up and back and *_ &^#+_ (=)**!. There, that’s it, you should be re-normaled. If not, like me, you have limited spit or saliva (use Xylemelts to sleep through the night), some taste buds (2% of normal), frogman voice (never know what will come out) and other things (don’t want to give it all away).

I feel very good, sleep great, use no medications and I am 24 weeks post, stage IVa, scc, 1 lymph node, hpv+. Oh yeah, I drink smoothies to excess (burp).

Good luck with being normal, we recognize normal, new normal, abi-normal and pretty much any normal you can think of.

Best,

Matt

Matt is normal, just trying to be funny

katenorwood
Posts: 1853
Joined: May 2012

Joseph L,
Welcome to the group, I didn't go to your site yet, but will. Was wondering on your dx ? I have acc, and doing pretty good...not disease free as of today...but thinking soon ! There are alot of knowlegable people on site, and I'm sure you'll be fitting right in, with the knowledge you've had to go through. Katie

boardwalkgirl
Posts: 263
Joined: Jun 2012

I was at the doctor's today and I am almost 6 weeks out from radiation. He said I should start to get some taste back in the next few weeks. He offered to put me on Salagen to help with the saliva or rather lack of saliva. I passed on that for now. I have lost a little over 20 lbs but have pretty much maintained my weight over the past 2 weeks with eating, so get rid of feeding tube next week. The first couple weeks after radiation were some of the worse I had other than the weeks of chemo. Just keep trying different foods and you will find something that tastes better than others. It will get better, it just takes time, and everyone is different.

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Welcome. I'm nearly two years past my last surgery - 2.5 years post chemo-rads. Taste came back quickly for me - well, most taste. A few months after treatment, the only tastes that evaded me were some ice creams, some chocolates, and some other cold things (some cereals in milk). I progressed from someone who ALWAYS had my security-blanket water bottle to someone who could go shopping (at a stroll speed) for four hours without water, so long as I had chewing gum. Taste is so close to normal for me, I have no complaints in that department. I still have reduced saliva and some eating restrictions, but I can live with it.

Got rid of my g-tube after eight months - about five months after chemo rads ended - I think I could have easily ditched the tube sooner. For me, getting rid of the feeding tube was a wonderful, freeing event - having it installed in the first place was, for me, proof that I was flawed (not that I thought I was perfect - just that the tube was a constant reminder).

As for returning to "normal" - I have lots of normal moments, and only mourn the "old" me from time to time.

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

The first couple of weeks after radiation is the big secret. The rad doctors give us all the radiation our bodies can stand, then we get another week. But like my parents would tell me: it's for my own good.

Well, it is for our own good. Nothing to do but poke some (hopefully) good nature fun at the whole routine. Radiation Therapy is hard enough without taking it seriously.

Sam999
Posts: 307
Joined: Mar 2012

I finished rads on jun 27 th.

I liked bolt house farms arabica protien plus smoothie ( available in target and whole foods). I also use raw protien powder and biochem whey protien ( ordered from amazon) to add in milk and have additional protien.

First taste that came back to me were fruits, everyone is different thou. Fo some folks fruit does not taste good.

For me i could eat pear, papaya at first than slowly added ripe peach, ripe plum, avocodos.

Main idea is to keep pushing yourself to try different food. I 100% understand that it is frustrating, but that is the only way to come out of this.

I still have dry moouth and take a sip of water or milk with every byte. Try to take a smaller sip so that it does not take away the taste of food.

Try chewing biotine dry mouth gum for chewing action.

Sam

phrannie51's picture
phrannie51
Posts: 3785
Joined: Mar 2012

makes me SO SO happy you have found us!! We don't have absolute answers to your questions, but we're all either going thru the exact same thing as you, or already have made it to the end of the tunnel. In other words for every person here, there is an answer on how it went for them.

You don't say how long you've been out of treatment...I'm almost 12 weeks out of rads, but only 2 weeks from my last chemo....I do have some taste, but I have mouth sores from the chemo so bad I can't experiment with what all I can eat yet. Like Sam said, you have to experiment. Myself, as soon as these sores go away, I'm going to start hitting some buffets in town, so I can take a teaspoon of this, or that and really experiment on what I may or may not be able to eat.

p

JOSEPH L
Posts: 3
Joined: Sep 2012

My cancer was viral, HPV 16 POSITIVE, tumor at base of the tongue (stage 4) and lumps on the side of neck. I also did not mention that I had a modified neck dissection about a month ago. My chemo and radiation ended early June. Then I had to heal up for the surgery...My Gtube is scheduled to come out on Oct 2nd. I appreciate alll the responses thus far...no sure how to manage these threads. Thanks!

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