Previous Thread
Next Thread
Print Thread
#23662 07-04-2007 05:11 AM
Joined: Jul 2007
Posts: 2
Member
OP Offline
Member

Joined: Jul 2007
Posts: 2
I am a new member - my sister was diagnosed with squamous cell cancer of the tongue in February of this year. I'm not sure what her stage is but she had two positive neck nodes (out of 20) and just completed rad/chemo treatments about a month ago. She had no risk factors for this disease and it has been a huge shock for all of us. So now, she is, as I said, about 4 weeks out of treatment. She still can't eat at all. She still has a feeding tube. And this week she has been complaining of worsening tongue pain -- which has me very worried. Why should anything be getting worse at this point? Shouldn't she be getting better? It seems that her biggest problem has been the tongue pain. Does anyone know of a medication that would help her tongue and mouth pain? How long will it be before she can expect to start being able to eat again? Does eating ever return to close to normal? Does anyone have any advise about this? My sister is very depressed, understandably. I have suggested to her that she join this forum, but she doesn't want to talk about it -- so I'm doing it for her. Any help would be greatly appreciated.

#23663 07-04-2007 05:28 AM
Joined: Jul 2006
Posts: 68
Supporting Member (50+ posts)
Offline
Supporting Member (50+ posts)

Joined: Jul 2006
Posts: 68
annette k
it's good you are there for her.i remember when i first found out i had cancer i cried all the time then i finally snapped out of it.i still have my moments but it's been 3 yrs. now.i took alot of advil and predisone and it seemed to help me alot i couldn't eat for about a month after i had my surgery and there are still some things i can't eat but hang in there it will all work out,just let your sister know we are here and so are you.i will be praying for her.
friends
lynn


linda anderson
#23664 07-04-2007 05:30 AM
Joined: Sep 2006
Posts: 8,311
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)
Offline
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Joined: Sep 2006
Posts: 8,311
Annette,

I am reposting what I felt like 4 months post Tx and 5 months post Tx below. I hope it may be helpful. As far as the tongue pain, she may have thrush which her docs can treat with diflucin.

I am now 10 months out and my taste is almost 100% back; my dry mouth is probably 90% normal and I take a daily thyroid pill but have no symptoms. Otherwise I am back to doing EVERYTHING I did before this whole mess started. I did a 40 mile bike ride this am and I feel as if I could do another tomorrow.

Here's the 4 and 5 month post:

One month ago (duh) I posted "How I am 4 months post Tx" and I didn't expect to give an update so soon but something has happened to change my mind. I will first start with the 4 month post for those that didn't see it:

Today marks the end of the 4th month after completeing my Tx and I thought it would be useful to others to post my progress.

Taste-I have almost all my taste back. I would rate it 9 out of 10.

Hair on the back of my head-Beginning to grow back.

Weight-Lost 35 pounds and have regained 5. Not sure I want much more back.

High frequency hearing loss-Was tested at Moffitt and they confirmed permanent HF hearing loss caused by Cisplatium. MO wasn't so sure and said to wait. Either I am getting use to it or it has slightly improved.

Mental capacity-Fully recovered or I'm worse off than I think. LOL

Physical-Muscle strenght 7 out of my 10. Haven't exercised like I use to due to dry mouth.

Stamina-Am able to almost work as much as I use to. Work 9am to 7:30pm. Use to work till 9pm but I am pretty tired by 7:30. Can't keep my eyes open by 10 to 11pm.

Turkey chin-Gobble, gobble, still have it.

Dry mouth-This has been the worst side effect to deal with by far. Not in pain but in affecting quality of life. Just in the last 2 weeks I have noticed a slight change for the better. It's hard to describe but it has improved. I would rate this 9 out of 10 being the worst.

All the other side effects I was dealing with at the end of Tx went away around the 3rd week post TX. Those being: nausea, throat pain, constipation, and maybe a few that I can't even remember now.

All in all I am very pleased with my progress especially considering the way I felt at the end of my Tx and I hope that others who are currently in or recently completed Tx will find this useful.

That was one month ago.

As I said I wasn't planning to followup so soon but just in the past 2 weeks something has improved with my dry mouth. I say something because it's hard to define BUT it has made a great improvement in my eating. I still sip water throughout the day but I don't wake up during the night with mouth related problems any more and my eating has taken a hugh turn for the better. I even look forward to meals now as I am beginning to try some of my old favorites that I had given up on. For instance, I ate a small thin crust pizza by myself the other day (well not all the crust) and I even ate a whole slice without having to swallow liquid. I find myself eating almost like normal, I mean taking 2 or 3 fork fulls before I feel the urge to drink. I don't think my taste has improved but that dry mouth crap has.

It's really hard to describe but something has happened and I wanted to share this improvement so that others may be on the lookout.

Please understand that her body was taken to the brink of death during Tx and the recovery will be a slow process but on the other hand 1 year out of her life is a mere bump in the road she has traveled.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
#23665 07-04-2007 05:46 AM
Joined: May 2007
Posts: 16
Member
Offline
Member

Joined: May 2007
Posts: 16
Annette,
The symptoms you have described are the after-effects of (primarily) radiation therapy. Though most radiation oncologists proclaim that these symptoms shall subside within 4 weeks but if you read the testimonials of members in OCF, you will find that patients suffer from these after-effects till 2-3 months.

My mother has completed her RT last week and she has severe pain in her neck and mouth. She has been prescribed to use a gum-paint (x3) and Decdak 4 + Glycerine (x4) for oral administration. Besides, the betadine gargles (x5) are a must to prevent any further infections. She also uses a medicated toothpaste which does not irritate the sores in her mouth. If you need the specifications of these medicines, please let me know.. I am a bit hesitant to write them down here because these could be very different from what you get in US.

Besides, all of these symptoms are temporary and the specialists repeatedly insist that the patient will return to a normal life. It also depends on the patients on how soon these after-effects fade away but please ask your sister to continue her nutrition properly via NG/Peg tube till she is confident to eat orally. I say this because my mother was quite adamant on getting her NG tube removed soon after RT was completed but now she realizes that it would not be possible for her to eat for another month (or a two).


CG to Mother (Bala Saigal/55/SCC, G1, T1N0M0, RT x 33 completed - 27/06/2007 | Presently recovering from the severe after-effects)
#23666 07-04-2007 01:02 PM
Joined: Jul 2007
Posts: 2
Member
OP Offline
Member

Joined: Jul 2007
Posts: 2
Just wanted to say thank you to those of you who replied so quickly. I will relay your suggestions and experiences to my sister. Her doctor has given her the idea that she should be starting to feel "normal" by August (this is after finishing rad/chemo in June) but it sounds like that may be overly optimistic. Also, what are people being told are the 5-year survival rates now? All the information I have found on-line sites a 50% 5-year survival when there is node invovlement. But my sister's doctor tells her that the rad treatment has greatly improved in the past few years, and that the actual survival rates are actually much higher than even a few years ago, and that she can expect to be totally cured. My sister is having a hard time believing this, after reading the available literature. Are other people being told that the survival rates are actually much better than what is widely published? I know that statistics don't necessarily mean much, but, still you want to have a realistic idea of what you're up against. Just want to know what is the latest on this. Thanks to anyone who can help.

#23667 07-04-2007 02:14 PM
Joined: Mar 2002
Posts: 1,140
Likes: 1
Patient Advocate (1000+ posts)
Offline
Patient Advocate (1000+ posts)

Joined: Mar 2002
Posts: 1,140
Likes: 1
Annette,

Any statistics you find are subject to interpretation. Bottom line, each patient is his/her own statistic. There are too many variables - age, physical condition, stage and location of disease, other disease, quality of treatment, post treatment habits, and even metal toughness - all figure into each patient's outcome. I suspect there is a bit of luck involved too. My personal opinion is that to look for hope in numbers is not the way to go. Ultimately, one either lives happily ever after or does not.

You may reassure yourself and your sister that NOBODY feels great four weeks out from treatment. The most important healing ingredient is time. Pain delays healing, so her doc should be made aware of that so proper meds can be prescribed.

Take a deep breath and know that things will look a whole lot better in a couple of months. If the odds are 50/50 or 60/40 or whatever, just decide that your sister will be on the winning side and let it go.

Good luck to you both!

Edited to say that I am more than 5 years out from a nasty tumor with nodal involvement and I feel absolutely great. Life is back to normal and has been for a long, long time. How your sister feels now bears no relation to how she will feel in the long run.


Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
Jina, VintageMel, rahul320, Sean916, Megm37
13,103 Registered Users
Forum Statistics
Forums23
Topics18,166
Posts196,921
Members13,103
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5