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#194837 - 07/10/17 03:32 AM Re: Just started RADS, question. [Re: WendyinGa]  
Joined: Apr 2017
Posts: 39
WendyinGa Offline
Contributing Member (25+ posts)
WendyinGa  Offline
Contributing Member (25+ posts)

Joined: Apr 2017
Posts: 39
Valdosta,Ga.,USA
I'll ask about the gabapentin in the morning. Hydrocodone is working but the constipation is a problem with it.

Another thing is the hair loss, which I did not think was going to happen, but ive been losing quite a bit the last 3 days. I have asian long hair, so i can see the bundles of strands just pulling out brushing..its become my new obsession and depression. Anyone else have hair loss? Please tell me that it was minor and not overall hair loss. Just venting. It will grow back, is my mantra.

Also, update on food. Now I'm on liquid/slimy/pudding like texture foods. No spicy foods at all. Which is weird. I can't taste them anyway, but they can burn like a volcano. I'm Korean, so I found out that I can eat seaweed soup, and strangely enough, cereal with milk is ok. Anything in the pudding and ice cream family is tolerated. But cannot eat mashed potatoes or Mac n cheese? Strange to say the least. Have lost approximately 9 lbs this week. Full tally in the morning..to which the doctor will get mad with me for not eating enough, but even though I eat, too much and I vomit. I've got a lot of weight to play with as I was 267 lbs when I began, now as of last Friday I'm 248. So they are not too concerted with loss, so much as getting enough nutrients and liquid.

Still here and now just sort of kicking!!


04/21/17 Biopsy at ENT
04/25/17 Biopsy result SCC on left side tongue
04/27/17 CT Scans--shows shallow tumor
05/02/17 Pre-op
05/03/17 Surgery to remove tumor.---awaiting pathology
05/08/17 Cancer still present
05/10/17 2nd surgery- removing more
06/05/17 Simulation done, PET on 6th, RADS start on 06/20/17
07/11/17 15th treatment completed. Halfway point!
#194839 - 07/10/17 12:43 PM Re: Just started RADS, question. [Re: WendyinGa]  
Joined: Jun 2007
Posts: 9,628
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 9,628
PA
What type of chemo are you getting? If you have a couple minutes it would be a huge help if you updated your signature. As far as hair loss... cisplatin and carboplatin arent supposed to cause hair loss. The only hair loss you should notice is a small round spot on the back of your head where the radiation beam exits. Mine was about the size of a nickle but to me it seemed more like a half dollar sized. It takes a while but that hair will eventually grow back in. If you are getting Erbitux then yes you could have some hair loss. Hair loss could also be from malnutrition, so can kidney problems and many other negative side effects.

Eating dairy products usually are soothing to a sore mouth. The consistency and texture plays a huge role in weather you will be able to eat something or not, pudding is much easier to swallow than mashed potatoes. Almost every OC patient is not able to tolerate anything spicy, difficult to chew or dry. Try applesauce, canned peaches, yogurt, cottage cheese, scrambled eggs, cream soups for things that have a smoother texture and are easier to swallow. Right now its all about the calories. Seaweed soup may be ok for you to eat but if its not high in calories it could be contributing to your weight loss. You need to make every swallow count with the highest amount of calories per swallow. I'll post the link for easy to eat foods.

As far as weight loss goes... this is VITALLY IMPORTANT!!!! Your treatment staff should be more concerned about this! You are not just "losing weight", you are losing muscle too which is nearly impossible to ever get back. Read about cachexia, its muscle wasting that cancer patients who dont have adequate nutrition go thru. Im also enclosing another link showing the importance of your intake. Your body is burning up calories at an incredible rate right now. Its trying to fight the cancer and rebuild itself at the same time which takes a huge amount of calories every single day. Too often (myself included) we fall into the "make up" routine. Thinking its ok to not hit the minimum calories or short yourself on taking in enough water thinking you will "make it up" the next day. Well tomorrow's "make up" day will NEVER hapen as you are already many days behind and by now its impossible to every "make up" what you are short.

I havent discussed how important it is to take in at least 48-64 oz of water daily yet. If you arent meeting these numbers that will have further negative complications as well. Talk to your doc and ask for a prescription to get extra fluids a few times a week in the chemo lab. This will help to stave off dehydration and help to make you feel better. I always felt so much better when walking out after a couple bags of fluids.

I am a big nag to most patients about their daily minimum intake and for a very good reason. I suffered far greater than I had to because of losing 65 pounds in a short period of time. So far, you are right on target to follow in my footsteps and end up with some big problems. This needs to be turned around right away. I cant stress how important this is enough!!! I ended up hospitalized several times for malnutrition and dehydration which could have been avoided if I had done better with my intake. You can drink your calories far easier than eating them. I cant remember if you have a feeding tube or not but if you dont Im pretty sure you will end up with one in the near future. But by that time you will feel so much worse because of the malnutrition. You CAN turn this around!!!! Its not an option, it MUST happen or you will soon feel so bad you wont be able to walk even one block easily. One of my lowest days of my life was when I was so sick I could barley walk and my teenaged son dragged/carried me and put me into the car got a wheelchair at the hospital and pushed me into my oncologist doctors office (without an appointment). I looked so bad, I couldnt get myself dressed, comb my hair or even hold my head up, I was practically incoherent I was so sick. The front desk looked at me and immediately took me into a room so I didnt scare any of their patients in the waiting room. Anyway, one look at me (didnt even touch me to take my temp or blood pressure or even look into my mouth) and the doctor admitted me into the hospital for a week. That was the first time, others followed. PLEASE starting as soon as you read this.... go drink a boost or ensure and continue to drink at least 4 more every day this week. You can even get the store generic brand, just get whatever kind has the highest amount of calories and get them in you. Since your weight is spiraling down so quickly you should be taking in not just 2500 calories daily, you should be doing 3500-4000 or even more. No, its not too much!!!! I was taking in some days 7000+ during my recovery and I didnt gain an ounce. During rads and the first 6 months of so of recovery its rare for any patient with OC to gain weight. I know you can turn this around!!!! Its all about how badly you want to do it and if you can force yourself to follow along what Ive explained. Im not typing all this for nothing... Im trying to help you so you do not suffer like I did. I went thru hell and back and its due to not having a caregiver to help me with my feedings. You need to ask for help and if your medical staff isnt overly concerned about your weight loss then they are doing you a huge disservice. I can count the times Ive ever criticitized anyones medical team on one hand in the past 10 years. Its not something I do but hearing they "arent too concerned" about your weight loss sends up the red flag and makes me upset and afraid about the quality of care they are giving you. It doesnt matter if you weigh 600 pounds! Bottom lines is... you should NOT be losing weight so quickly while going thru rads for OC.

I know you feel horrible enough and I so wish you didnt have to go thru this. But how much you have to struggle is all in your hands as far as making your daily minimum numbers for calories and hydration. Its all about the calories so you want to get as many as possible, the highest number per swallow you can get. So I'll give you a break and stop my ranting. I think you got the point by now. Please review the links and I promise you that once you turn this around you will feel much better!!!!

Cachexia ---- muscle - weight loss during rads

List of Easy to Eat Foods


PS....
Here is a recipe for something I used to make and drink when I went thru treatments and recovery. The shake has anywhere from 1200-2000+ calories depending on how you make it. The list of foods above will help too, they mostly have a smoother texture and arent spicy which should be easier to tolerate.


(All measurements are estimates)

Giant High Calorie Choc-Peanut Butter Milkshake

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 to thin it down to what works best for you.


Livestrong - losing weight with chemo

Livestrong - Calorie Intake Importance

Diet and Nutrition during treatments





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
#194841 - 07/10/17 01:59 PM Re: Just started RADS, question. [Re: WendyinGa]  
Joined: Oct 2012
Posts: 834
gmcraft Offline
"OCF Canuck"
gmcraft  Offline
"OCF Canuck"
"Above & Beyond" Member (500+ posts)

Joined: Oct 2012
Posts: 834
Toronto, Canada
If you can tolerate dairy, try boosting your the calories with fortified milk. Here is the recipe


How to Make High-Calorie, High-Protein Shakes
Many of the following recipes call for protein-fortified milk. This is an important ingredient as it can add up to four grams of protein per serving and be used in milk-based recipes to increase caloric and protein content. They can usually be found in your grocer's dairy case alongside soy milk, almond milk, and other specialty milk products.

If you cannot find protein fortified milk at the grocery store, here is an easy way to make it at home:

Protein Fortified Milk Recipe
Ingredients:

1 quart whole milk or 2% milk
1 cup powdered non-fat dry milk
Blend milk and powdered milk together. Chill in refrigerator for 4-6 hours before consuming.‚Äč Each one-cup serving of protein fortified milk contains 211 calories and 14 grams of protein.

This was suggested to us by our hospital. The trick, of course, is to boost the calorific value of every mouthful you take in.

As for the hair loss, Cisplatin causes some hair loss but it is insignificant. Our MO did say we might notice a bit of hair on the pillow in the morning, but it should cause all the hair to fall out. However, with Asian hair, it may be more noticeable because you can see it so much more clearly.

Christine is RIGHT about the dehydration. It really makes one feel so very sick. S


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
#194847 - 07/11/17 11:20 PM Re: Just started RADS, question. [Re: WendyinGa]  
Joined: Apr 2017
Posts: 39
WendyinGa Offline
Contributing Member (25+ posts)
WendyinGa  Offline
Contributing Member (25+ posts)

Joined: Apr 2017
Posts: 39
Valdosta,Ga.,USA
Hi Christine. Actually no chemo. It's the radiation that is causing the hair loss. Strange...my cancer was on the left side of my tongue, but my hair loss is from the right side of my neckline. They said it shouldn't be much, but maybe I'm seeing things, but it's more than a little. It's ok, though....it will grow back. As far as eating goes. I'm desperately trying to eat some food. But I can only stomach about a cup of cereal with milk and protein shakes. Depressing, I lost another 5 lbs since Friday. Doctor is concerned and they will be paying closer attention to my eating and weight loss., bus as far as days go,,,, this day was not so bad. Thanks all.


04/21/17 Biopsy at ENT
04/25/17 Biopsy result SCC on left side tongue
04/27/17 CT Scans--shows shallow tumor
05/02/17 Pre-op
05/03/17 Surgery to remove tumor.---awaiting pathology
05/08/17 Cancer still present
05/10/17 2nd surgery- removing more
06/05/17 Simulation done, PET on 6th, RADS start on 06/20/17
07/11/17 15th treatment completed. Halfway point!
#194851 - 07/12/17 01:04 AM Re: Just started RADS, question. [Re: WendyinGa]  
Joined: Jun 2007
Posts: 9,628
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 9,628
PA
Radiation does cause some hair to fall out in the area it exits the head. Most of us had a round patch near the base of our necks. If your diet isnt balanced that can cause hair loss too. It could be related to any number of things.

If you are still losing weight then its obvious the daily calories that are being taking in are not enough. I completely understand your limits with not being able to eat large amounts but you must change what is currently not working for you or you wont see any improvement. This is why every single swallow must count with the highest number of calories you can get. Drink your calories, try the calorie laden choc peanut butter shake I posted. I know this will change things if you make this every day, it has turned many members around who were having a hard time. I posted a very long detailed reply yesterday morning that took me almost 2 hours to write and post all the links. To turn this around you must follow what I detailed in that post, read everything including all the links. If you dont immediately change your current intake, this whole thing will be much harder on you than it has to be. Its not easy but you must push yourself to take in a little more at every sitting. Start by taking 2 more bites every time you think you are finished. Then the next day take 3 more bites and so on. You CAN do this and boost those calories but it takes work and real effort. Please take a few minutes to read and absorb everything I wrote. If you can follow what Ive outlined I know you will begin to feel a little better. Dont forget about the hydration part too. Also conserve your energy as much as you can, sit when you can stand, lay down when you can sit. This will help you to avoid burning any extra calories.

If you are starting to feel depressed (very common with OC patients) speak up and talk to your doc. Ask about any therapists there who counsel cancer patients. Its not easy being diagnosed with a potentially life threatening disease and treating it. You are going thru some huge changes in a very short amount of time. Many OC patients take anxiety meds to get thru the rough days. Plus if you are taking pain meds, that can further make you feel low. I know how hard this is for you, I had a very difficult time too.

Hang in there!!!


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
#194852 - 07/12/17 08:30 AM Re: Just started RADS, question. [Re: WendyinGa]  
Joined: Apr 2017
Posts: 39
WendyinGa Offline
Contributing Member (25+ posts)
WendyinGa  Offline
Contributing Member (25+ posts)

Joined: Apr 2017
Posts: 39
Valdosta,Ga.,USA
Im taking what you have given me to heart. I sat down and reorganized mySelf. Created a schedule to get myself on track with nutrition. Since im not able to digest solids. Ive gone to liquids and pudding mix. Im meeting with the nutritionist tomorrow, as i lost weight again. But ive gotten a lot of support and encouragement from everyone, thank you. Now i realize , i was not taking my nutrition needs as seriously as i should have. I have been warned by my nurses , docs, here on the forum, friends and family. Thank you again. I iust needed a kick in the pants, so to speak...to get myself motivated again.


04/21/17 Biopsy at ENT
04/25/17 Biopsy result SCC on left side tongue
04/27/17 CT Scans--shows shallow tumor
05/02/17 Pre-op
05/03/17 Surgery to remove tumor.---awaiting pathology
05/08/17 Cancer still present
05/10/17 2nd surgery- removing more
06/05/17 Simulation done, PET on 6th, RADS start on 06/20/17
07/11/17 15th treatment completed. Halfway point!
#194853 - 07/12/17 08:33 AM Re: Just started RADS, question. [Re: WendyinGa]  
Joined: Apr 2017
Posts: 39
WendyinGa Offline
Contributing Member (25+ posts)
WendyinGa  Offline
Contributing Member (25+ posts)

Joined: Apr 2017
Posts: 39
Valdosta,Ga.,USA
I also wanted to say...i guess more to myself. That its not about enjoying food anymore. I cant taste it anyway. Just get it inside myself, and let my body do the rest. ***I feel like my body hates food, right now.


04/21/17 Biopsy at ENT
04/25/17 Biopsy result SCC on left side tongue
04/27/17 CT Scans--shows shallow tumor
05/02/17 Pre-op
05/03/17 Surgery to remove tumor.---awaiting pathology
05/08/17 Cancer still present
05/10/17 2nd surgery- removing more
06/05/17 Simulation done, PET on 6th, RADS start on 06/20/17
07/11/17 15th treatment completed. Halfway point!
#194854 - 07/12/17 11:57 AM Re: Just started RADS, question. [Re: WendyinGa]  
Joined: Oct 2008
Posts: 215
travelottie Offline
Gold Member (200+ posts)
travelottie  Offline
Gold Member (200+ posts)

Joined: Oct 2008
Posts: 215
NY state
I can't believe that I forgot about making protein fortified milk. In addition, the powdered form can be sprinkled on other foods, yogurt, canned fruit, etc. Very helpful, easy, and inexpensive.


CG to husband, dx @ age 65, nonsmoker/social drinker. Dx 5/08 SCC Stage IV, BOT T1N2aM0. 33 IMRT - completed 9/12/08. Induction Chemo (Cisplatin, Taxotere & 5FU), plus concurrent Cisplatin.
1/09 PEG removed; 5/09 neg PET/CT; 5/10 PET/CT NED
Dental extraction & HBOT 2013; ORN 2014; Debridement/Tissue Transfer & HBOT 2016
#194886 - 07/17/17 10:18 PM Re: Just started RADS, question. [Re: WendyinGa]  
Joined: Apr 2017
Posts: 39
WendyinGa Offline
Contributing Member (25+ posts)
WendyinGa  Offline
Contributing Member (25+ posts)

Joined: Apr 2017
Posts: 39
Valdosta,Ga.,USA
Thanks Travelottie, I have incorporated the powder into my food. I have to say, that I'm getting the protein I need, just not enough calories, before I get too sick to take in more. I keep losing weight, even though I have increased my calories up to at least 2500, if not more. The shakes and yogurt are about the only thing Ive got now, as well as boost. **I read an article...What happens if you lose your sense of taste? the writer, basically covers what we go through when our taste is gone. A point, she made, is that she didn't lose all sense of taste, as there are taste buds elsewhere in the throat and esophagus. She found that some things she could sense. Certain essences that normal taste buds don't register. I have been experimenting, and yes there are some things. Peanuts, grapefruit, Seaweed (lol...its a korean thing)...but this "knowing" that there are "tastes" out there that I haven't paid attention to in the past are, perhaps what I can find pleasure in today.

The mouth sores that StefH has mentioned is pretty bad as well. I got a waterpik to help with hygiene, but found that it was way too strong in pressure. My fault, as I was trying to go cheap and got the cordless one on sale, it does not have pressure settings. Will be returning it tomorrow wink and getting the slightly more expensive one, but hopefully it wont bore a whole in my gums, like this one did. I cried.

I have lost a lot of hair in the back on my head, near the neckline. It comes out more everyday. Depressing, as my hair was very long. It's too late to cut it short, since I started treatments with a long braid. They were surprised that so much is coming out, but they explained that it is where the radiation is exiting.

I'm going to ask the Doctor tomorrow about getting some hydration. I'm just not getting enough. Water tastes like saltwater. Which they say may be a sign of dehydration, but its also part of losing taste and salivary glands, so I'm just guessing. I've dieted in the past, and drinking fluids has always been important, but until you have to drink a certain amount daily, you never know how difficult it can be.

***The waiting room in which the patients all sit in, waiting for treatment, has become pretty depressing. As, now, everyone is in some form or other of distress. I'm the only one with oral cancer, but there is a gentleman with throat cancer, as well. He is not doing well at all. His family is super supportive, and he is so nice. He is just so drained. I have mentioned to his family that this forum has been such a Godsend. I hope they took my advise.

I really don't want to go to treatments now, but I will. I am so grateful that this forum is here. I hope this doesn't come out wrong...but i'm so very thankful that I have the knowledge from so many that have gone through this before. Bless Everyone.


04/21/17 Biopsy at ENT
04/25/17 Biopsy result SCC on left side tongue
04/27/17 CT Scans--shows shallow tumor
05/02/17 Pre-op
05/03/17 Surgery to remove tumor.---awaiting pathology
05/08/17 Cancer still present
05/10/17 2nd surgery- removing more
06/05/17 Simulation done, PET on 6th, RADS start on 06/20/17
07/11/17 15th treatment completed. Halfway point!
#194887 - 07/17/17 10:40 PM Re: Just started RADS, question. [Re: WendyinGa]  
Joined: Feb 2017
Posts: 51
sooner Offline
Supporting Member (50+ posts)
sooner  Offline
Supporting Member (50+ posts)

Joined: Feb 2017
Posts: 51
Wendy, my husband is 12 weeks post treatment. I am guessing you do not have a PEG? We had a standing order for fluids and my husband had to use it multiple times. I cannot support what Christine says about fluids and nutrition enough. I will tell you that numerous rough days during treatment we had to return to a discussion about those two items. If you have 3 days of consistently meeting your intake goals, you will see some things improve I promise. Also, we have just discovered the joy of blending foods in the Vitamix. My husband survived treatment on VHC Boost we could only get from Amazon in our area. Just to give you some hope, today my husband ate three meals! So hang in there.


Wife to DP. DX SCC BOT 1/31/17
First treatment 2/27/2017 Cisplatin 3 times and IMRT
Last treatment 4/18/2017
Clear PET 7/13/2017
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