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#192411 05-23-2016 09:32 AM
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Hi all,

I am a 53 year old female undergoing radiation for a tumor in my soft palate. I have completed 2 weeks of my 6 week plan. While I am trying to stay positive, I am already growing weary of the side effects of the treatment. I have lost my taste almost completely, I can taste the hint of sweet and/or chocolate, but nothing else. Eating solid food is such a chore I dread even trying. The dry mouth has caused my tongue to crack and bleed, my gums to bleed when I brush. I am using the methods given to me thus far to help with the issues, but I don't know if they are helping or not. It's hard to have family understand the full scope of this so I was glad to find a place where people really understand. I am looking forward to finding support and understanding here. After reading just a few of the other posts here I realize I really have nothing to complain about. My tumor was encapsulated and while the ENT felt he got it all, the margins were too small to insure there were no bad cells left behind, hence the radiation. My situation is not near as serious as most of you, but I would really be interested in hearing from anyone who has had what I had and about the longevity of the side effects.

Last edited by CArmstrong; 05-23-2016 09:52 AM.

03/02/16 surgery to remove malignant tumor in soft palate
05/09/16 began 30 treatments RAD (no chemo)
05/16/16 loss of taste and dry mouth

CArmstrong #192416 05-23-2016 11:14 AM
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Welcome to OCF! Im sorry you have a need to use our site.

During rads, it will get progressively more difficult to eat as treatments continue. Best thing I can tell you is focus on what you can control... your intake! Chemo and rads for many patients isnt easy. The hardest thing is to keep your intake high enough. If you can start right away getting used to taking in at least 2500 calories and 48-64 oz of water daily then you should adjust in time before it gets really difficult.

Having trouble with taking in enough fluids? Your doc can also write an open prescription for you to get extra hydration in the chemo lab. It will instantly perk you right up when you know you are not meeting your daily water goals. Some patients will make it a habit to go a few times a week.

I know the calories sound excessive and many are concerned about gaining weight. Your body is going thru incredible changes right now and burning up calories much faster than normal trying to fight off the cancer, the treatments all while trying to rebuild itself. This is why its so important to keep your intake at least 2500 calories daily, more is even better and will make the next few weeks/months much easier to get past. This will need to continue until at the very least you hit the first year after finishing rads. Also, its very important to keep swallowing water every single day even if your throat gets really sore. Believe it or not, swallowing muscles can quickly forget how to function.

We are here to lean on and we will help get you thru everything. Try not to compare your situation to others. Ive met so many OC patients and even those who "sail right thru" rads all suffer in some way. Everyone is affected slightly differently just know we all at this site understand exactly where you are coming from.

Best wishes with everything!!!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
ChristineB #192417 05-23-2016 12:29 PM
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thank you. I cannot imagine that calorie intake when I have such a hard time eating. They told me milkshakes would be good. I am doing good with drinking water, but my throat has not yet begun to get sore. My tongue, cheeks and gums are sore but I don't have trouble swallowing liquids at this point.

Thank you for your pointers. I'm glad to have found this community.


03/02/16 surgery to remove malignant tumor in soft palate
05/09/16 began 30 treatments RAD (no chemo)
05/16/16 loss of taste and dry mouth

CArmstrong #192418 05-23-2016 12:54 PM
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Welcome to our family. Sorry you have to be here, but we're all here for help and support. Christine has given you great advice to which I can add only a little.

I know about the problems eating solid food. Yeah, it's a chore, no question. If you're having mouth sores and pain I'd recommend asking your team about viscous lidocaine. Essentially a numbing agent in a bottle. I found swishing it around for lengthening times was absolutely necessary before I could tolerate anything short of water. If you can, forget about how things taste - just do it for the calories. You really do need them, and to keep your swallowing muscles in shape as well.

Are you doing liquid nutrition? You don't mention it but I'll assume it's in the cards as it is for many of us. That will make it easier to get those calories down. I lived on the stuff for at least 6 months. I did lose weight as most of us do, but it kept me going!

Also keep up the moistening in your mouth. There are various concoctions, some prescription some not. Ask your RO nurse about them. Christine's idea of IV hydration is great. I did it a few times during rads and it always perked me up for a few days. Thinking back I should have gone twice a week! I think you'll find it very helpful.

Mainly: hang in there. You'll get through this! Like you I had just about no support system other than phone calls. Come in here whenever you want to ask questions or just to vent. That's why we're here.

All the best to you.


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
CArmstrong #192422 05-23-2016 01:59 PM
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Welcome to OCF.

As the side effects are still developing and you can swallow, consume as many calories as you possibly can now. Fat has twice the calories than carbs and proteins so all the fatty stuff you generally avoid, eat as much as you want.

The side effects will likely increase making it harder to eat so the chance of losing weight increases. I had plenty extra going in and lost plenty.

Good luck


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
CArmstrong #192424 05-23-2016 06:19 PM
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I know 2500 calories every single day sounds like soooo much when you arent eating normally!!! Go for hi calorie everything and have dessert too. Ive been down this road and know how difficult it can be. I wish I had listened better to those who told me to push my intake. I ended up hospitalized for malnutrition and dehydration a few times. I felt so bad I actually thought I was in the beginning stages of dying. PLEASE, do better than I did and push yourself immediately to boost your daily calories so you dont go thru what I did. Now Im the forums intake nag where I bug everybody who needs a nudge or two.



Easy to Eat Food List

(All measurements are estimates)

Giant High Calorie Choc-Peanut Butter Milkshake (1200++ calories per shake depending on how big you measure the ingredients)

3 or 4 cups chocolate ice cream (regular/full fat type)
2 tablespoons peanut butter (smooth type)
2 tablespoons chocolate syrup
1 or 2 cups whole milk (can substitute half and half to add even more calories)
1 scoop carnation instant breakfast
1 scoop high protein whey powder
(check with doc if this is ok)

Blend this extra long to make it very smooth and creamy so it goes down easier. If the shake is too thick, add more milk (or half and half) to thin it down to what works best for you.


The above list of easy to eat foods and the calorie loaded chocolate milkshake will help you get to meet that daily minimum of 2500 calories. You can always pick up boost or ensure to drink too. Best wishes with continuing to push yourself with eating every single day.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
CArmstrong #192438 05-26-2016 03:28 PM
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I started adding 2 tablespoons of coconut oil and 2 tablespoons of grass-fed butter to my lattes twice a day. that alone is over 800 a day. add in whole grass-fed milk and I'm around 1,000 extra.


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
CArmstrong #192445 05-26-2016 10:13 PM
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Posts: 383
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Welcome CA! Comments above could not ring more true. Eat/drink all the fattening stuff you can and if you get to 3,000, 4,000, even 5,000 calories a day right now more power to you! We have all traveled that road described. It gets tougher before it gets better, but it will get better!!!!! Hang in there and lean on everyone here anytime you need to.


SCC right side BOT/FOM; DX 1-25-06; Neck dissection/25% of tongue removed 2-17-06. Stage 2 Recurrence 7-06: IMRTX35 & 3X Cisplatin ended 10-18-06. Tumor found 03/18/13; Partial Glossectomy 03/28/13 left lateral tongue. Nov. 2014; headaches,lump on left side of throat. Radical Neck Dissection 12-17-14; Tumor into nerves/jugular; Surgery successful, IMRTX30 & 7X Erbotux. Scan 06-03-15; NED! 06-02-16; Mets to left Humerus bone and lesion on lungs-here We go again! Never, Ever Give Up!

**** PASSED AWAY 10/8/16 ****

CArmstrong #192454 05-27-2016 07:22 AM
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A lot was already covered, but just want to add that treatments have acute side effects, pretty much what you're experiencing, and long term effects, some which may or may not occur, depending on many factors, several months, even years after treatment, but right now is to get through your current treatment. Also, to never feel you have nothing to complain about or your extent of treatment may not be as bad as some.

Good luck, and keep posting!


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






ChristineB #192481 05-30-2016 11:40 AM
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Sounds great, thank you!


03/02/16 surgery to remove malignant tumor in soft palate
05/09/16 began 30 treatments RAD (no chemo)
05/16/16 loss of taste and dry mouth


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