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Hi all... new to this website/forum and very very happy to have found this and all of you.

I live in Northern CA and had the tremendous good fortune to have had my throat/tongue surgery... the removal of my tumor at the base of my tongue... done by very skilled and dedicated surgeons.

I went to UCSF and they did a remarkable job. I have a new tongue designed from the skin/muscle and vein they removed from my forearm. Then they covered that removal with a piece of skin from my thigh.

My new tongue works very well� I can talk, my speech is a bit �thick� but people can understand me. I am told by many people that being able to talk after having had so much oral reconstruction is really a blessing and many folks do not come out of this kind of surgery being able to talk and swallow as well as I seem to be able.
Again, let me say I am amazed at the skill of these doctors�

My struggle tho is in eating enough to keep my weight on. I lost almost 70 #'s in this past year... mostly from complications with radiation therapy.

My mouth and throat were so seriously burnt that I found I could not eat or drink a thing. Nothing went down... I vomited every day... all day and night. I thought I would die from starvation. I really did.

But I survived... so happy to be alive. While I was undergoing radiation therapy I had a PET/CT scan done and it turned out that I had lung cancer (from smoking)... not related to the adenoid cystic carcinoma in my throat. !!!!

Immediately after the 35 sessions of radiation therapy I underwent lung surgery� and again, total success. I am now cancer free.

My struggle is still with recovering from my throat surgery and being able to eat/swallow enough food and liquids so as to keep my weight ON. At the beginning of this year I weighed in at approx.. 175#�s and am now weighing in at 109#�s.

I am still losing weight. I have almost no taste buds and my saliva is odd. I suffer from extreme dry mouth and have difficulty talking for any length of time.

Swallowing is very difficult and having been a �foodie� all of my adult life, I am having great difficulty finding things to eat that I can enjoy. I used to LOVE to cook and eat� now well� not so much.

Mostly I am relying on CVS store brand �ensure� type drinks. I have not had reason for the stomach pump� altho I was released from the hospital with my food tube still in my nose. I was being fed thru the tube for about 3 weeks after surgery, until I thought that I could manage to eat.

All was going very well UNTIL the radiation therapy. My reaction to the radiation was so severe that I really wondered if I was going to survive it.

I am very happy to have found this forum where we can share our success.

I have had difficulty dealing emotionally with the cancers, this has been a very difficult year to say the least. It was difficult but I made it. I won over these cancers and I want to keep the cancer away. I am very concerned about eating GOOD food, foods that will help to keep me strong and healthy.

Unfortunately these are not the foods that I can get down my throat. I am needing to eat starches and more sugar than I am comfortable eating. Veggies are very difficult to eat� maybe I can juice carrots and cabbage more often. That�s a thought!

Well, I wanted to say �hello�, introduce myself and to let you all know how happy I am to have found you all.

I really enjoyed reading the posts here about food and eating issues. I found a great deal of comfort knowing that there are others out there dealing with the my issues and finding success as well as encouragement.
wink
Thank you all for your bravery and for sharing, and I hope to post again.


Xantippi... 64 year old Resident Manager for small apartment community in SF East Bay area, Northern CA

03/2013 Adenoid cystic carcinoma (partial throat, salivary glands and tongue removed and rebuilt)

10/2013 Large cell carcinoma found in top chamber of right lung successfully surgically removed

01/2014 Cancer Free...Doing well, able to eat enough to begin gaining back the 70 #'s lost in less than 8 mo
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Xantippi, your post is not visible. Im sorry, our forum does not support using copy/paste. Please type your post and try again. Let me know if you have any questions or need further assistance.


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
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The forum software developer has assured us that his issue is being resolved. Chester has found an occasional issue with the apostrophe, but it isn't universal. So if you are having issues, and use lots of contractions, please visit that idea until the core program gets an upgrade.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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Oh, for pete's sakes... that is exactly what I did as I am not a great typist. I typed up my intro in "Word" and then pasted it here in the blog spot.

Drat that! OK, let me try again.

Thanks for the heads up. LOL...!!!


Xantippi... 64 year old Resident Manager for small apartment community in SF East Bay area, Northern CA

03/2013 Adenoid cystic carcinoma (partial throat, salivary glands and tongue removed and rebuilt)

10/2013 Large cell carcinoma found in top chamber of right lung successfully surgically removed

01/2014 Cancer Free...Doing well, able to eat enough to begin gaining back the 70 #'s lost in less than 8 mo
Joined: Nov 2013
Posts: 9
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Joined: Nov 2013
Posts: 9
Recovering and stabilizing to my "New Normal"

Hi all... new to this website/forum and am very very happy to have found this source of support.

I live in Northern CA and had the tremendous good fortune to have had my throat/tongue surgery... the removal of my tumor at the base of my tongue... done by very skilled and dedicated surgeons. The doctors said I had adenoid cystic carcinoma which is usually caused by asbestos. !?!?!

I went to UCSF and they did a remarkable job. I have a new tongue designed from the skin and muscle (including a vein) that they removed from my forearm. then they covered that spot with a piece of skin from my thigh.

My new tongue works very well... I can talk, my speech is a bit thick but people can understand me. I am told by many people that being able to talk after having had so much oral reconstruction is a blessing and many folks do not come out of this kind of surgery being able to talk and swallow as well as I am experiencing, it appears.

My struggle tho is in eating enough to be able to keep my weight on. I lost almost 70#'s in this past year... mostly from my reaction to the radiation therapy.

My mouth and throat were so seriously burnt that I found I could not eat or drink a thing. Nothing went down and I vomited all day every day. I was only able to sleep for a couple of hours at a time regardless of what meds I took to sleep.

That all happened this past July, and I am happy to say I survived.

During that struggle with the radiation therapy I had a PET/CT scan done and it turned out that I also had lung cancer (from smoking)so a totally different type of cancer.

Almost immediately after my 35 sessions of radiation therapy I underwent surgery to remove a piece of my lung, taking the tumor out of course. The surgery was completely successful and I am now cancer free. completely cancer free.

I am still in recovery, tho, meaning that I have pain and am struggling with trying to get food down my throat. As of last week I am still loosing weight. I have a noticable lack of taste buds and no salivary glands.. so food tastes and feels very strange.

I am well aware of what good foods I should be eating, but these are the very same foods that I can't get down my throat. I am relying on the CVS store brand Ensure type liquid nutrition, and adding chicken noodle soup, spaghettios and sometimes beans down my throat. My favorite food right now are grapes. The small grapes feel cool and soft in my mouth and add moisture. I love grapes... too bad they are so low calorie.

Grapes too can be difficult to swallow... sometimes I have to cough them up from the back of my throat 3 and 4 times before I can get the pieces small enuf to go down... but they are worth the effort, for me anyway.

I appreciate having read so many blogs from you all, sharing your struggles with eating and putting on weight. I love having found you all and I am greatly helped by the many suggestions I have read about how to get food down our throats.

I wanted to share with you that I think of the people who contribute to this forum and am sending all of you my warmest wishes for your continued good health, and success in overcoming this serious illness.

Thank you for all your bravery and for sharing... and I hope to post again, real soon.

Last edited by ChristineB; 11-18-2013 07:57 PM. Reason: removed religion reference

Xantippi... 64 year old Resident Manager for small apartment community in SF East Bay area, Northern CA

03/2013 Adenoid cystic carcinoma (partial throat, salivary glands and tongue removed and rebuilt)

10/2013 Large cell carcinoma found in top chamber of right lung successfully surgically removed

01/2014 Cancer Free...Doing well, able to eat enough to begin gaining back the 70 #'s lost in less than 8 mo
Joined: Jan 2013
Posts: 1,291
Likes: 1
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Hi,

Losing 70 pounds sounds like a lot but if you are not severely underweight then maybe you will be able to keep down foods with more caloric density. At worst case, you can get a PEG and get your nutrition that way to get your weight to stabilize.


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
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Yeah... you know, I thought about that myself some weeks ago. but the doctors were not overly worried when I went into the hospital for the lung surgery last month.

And I have been back to my oncologist and the surgeon, of course, very often this past month... and they seem to think I can put the weight on myself.

My body scares me, but the professionals seem to be OK with it... my weight and the way I look. I look to be nothing but skin and bones... but!?!?!

So yeah.. I still considering the stomach pump idea if I don't put some weight ON or at least stop dropping weight.

Thank you for your kind reply. I appreciate hearing from you.


Xantippi... 64 year old Resident Manager for small apartment community in SF East Bay area, Northern CA

03/2013 Adenoid cystic carcinoma (partial throat, salivary glands and tongue removed and rebuilt)

10/2013 Large cell carcinoma found in top chamber of right lung successfully surgically removed

01/2014 Cancer Free...Doing well, able to eat enough to begin gaining back the 70 #'s lost in less than 8 mo
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Welcome to OCF! You have been thru alot and it will take a long time to fully recover. If you were only recovering from OC, I would say it can take a full 2 years.

As far as your weight goes, it is very common to lose significant amounts of weight. I lost 65 pounds myself and have gained very little back even 6+ years later. In order to recover your intake needs to remain hi. Every day you need a minimum of 2500 calories and 48 oz of water. If you still continue to lose weight with this intake bump it up to a minimum of 3500 calories daily. I know its alot but in order to heal after what your body has been thru it requires higher calories. Check with your doc and see if its ok to add some high protein whey powder to help speed your healing. Without pushing yourself to take in at least 2500 (or 3500) calories and 48 oz or more of water every single day your recover will take much longer and be a more difficult path. Nutrition and hydration together are the most important part of this battle.

If eating is difficult drink the Boost very high calorie drink which has 560 calories per drink box. This can help you to easily hit your minimum calories. here is a list of easy to eat foods too. If you choke on the grapes you are eating, cut them in half so they dont become stuck and create a life threatening situation. Its very easy for OC patients to choke easily during recovering and relearning how to eat.

(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

Blend this extra long to make it very smooth and creamy so it goes down easier. Each shake is about 2000 calories.


Easy to Eat Food List


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

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