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#200265 07-20-2020 05:06 PM
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I am a five year survivor of oral Spindle CC left mandible (no Chemo/Radiation). Recently had surgery (4/30/20) for oral Squamous CC on left tounge. Removed 1/3 of tounge. Completed 33 radiation treatments 7/10.Managed not to have a feeding tube put in. I was a large guy so I had weight that I could loose. I could eat solid food until 6/10, and have been on a liquid diet since then. Lost 50 pounds. 25 pounds with surgery & 25 with radiation.
I am a Chef by trade and I'm hoping my taste buds return. They say I should be back to solid food in 3 to 6 weeks.

Last edited by Travisty; 07-20-2020 05:24 PM.
Travisty #200266 07-21-2020 06:38 AM
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I too had 1/3 of my tongue removed (12/19/19) and completed radiation and chemo treatment (3/12/20). Everything tasted salty to me by the time my treatment was over. Once my mouth sores healed it took a month or two for my taste buds to return. Everyone is different so your results could vary. Hang in there!


The number of people involved in my care (@ a CCC) is humbling. Doctors, nurses, therapists, support staff, & of course, family. With everyone fighting for me to beat cancer the least I can do is fight back and win!
Travisty #200273 07-23-2020 01:15 AM
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Hi Travisty,

I finished rads on Halloween last year. A lot of taste returned in March, but it's continuing to improve. I couldn't taste cherry (fresh or synthetic) until 2 weeks ago. I couldn't stand tea or coffee for ages. Some days my taste of certain foods disappear for a bit, but then comes back.
Just make sure you get a lot of protein in your diet to help your body heal. My dietitian has told me to have 100g a day, double the RDA for adults. Since I've increased my protein, I am feeling more like myself, rather than a patient, if you know what I mean.


F 39 x-smoker no alcohol
05/20/19 T4aN1/N2bM0 SCC a whopper of a tumour at 8cm long & 4cm wide
Pembro pre & post surgery
RIG
Glossectomy ND RFFR 08/13/19
RT x33
2x cispltin
So far, no evidence of disease
Now an author of a recipe book for mouth cancer patients
Travisty #200285 07-27-2020 05:27 AM
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Welcome to OCF, Travisty! You've found a great resource to help with info and support. One thing you will notice is that although we share info we have learned thru our own oral cancer (OC) experiences, and thru others here on OCF online public forum we are surprisingly very knowledgeable for a group of people without years of formal medical training. Another thing that we do is share info honestly, even when its not the best news.


Congrats on completing your treatments on 7.10.20!!! Not an easy road was it? Some will sail right thru without barely noticing side effects while others struggle right from the start. Being only about 2 weeks post rads, you sound like you are doing amazingly well considering the major surgery you had prior to rads!!! Many who have no or severely limited sense of taste will slowly see this improve up til 2 years post rads. Theres always an exception to the rule with a few members reporting a boost of significantly improved sense of taste up to 2.5 years post rads. This also applies to patients lack of saliva as well.

As far as the recovery phase goes, it can be a long road full of ups and downs with some setbacks here and there. Almost every patient puts together their own mental timeline from everything their medical team has talked to them about. Reality is unfortunately very different than what most patients expect when they think of their personal timelines schedule. You have been thru ALOT and it will take your body a long time to get thru the recovery phase. No matter how much we all want to be well again, it seems to take forever. Im very sorry to be the one who gives you this bad news!!!! A complete recovery takes 2 full years post rads. Another thing that impacts recovery is a patients sustained weight during rads of if there was substantial weight loss (not recommended even if a patient is considered obese with an extra 400 pounds) is NOT good!!! I went down that road myself and not only did I suffer much more than necessary, I lost fat but I also had major muscle loss which has been impossible for me to get back even 13 years later.

Most medical teams will not pinpoint any type of time ranges for patients. Its not an easy thing to say which patients will sail thru recovery and which ones will stumble wrought with side effects. Thats why I was surprised to hear your medical team said only 3-6 weeks until you should be back eating regular food again. From what Ive learned in the 13 years Ive been a member of OCF, interacting with hundreds of other oral cancer (OC) patients and caregivers is there are very, VERY few OC patients that are able to successfully eat regular solid foods before they're around 8 weeks post rads. Of course there are exceptions and those patients who did not have chemo tend to do better as will younger patients. But, even at 8 weeks post rads thats pushing it as most OC patients will have varying side effects that negatively affect the patients ability to eat. Its not completely impossible to eat normally at 3-6 weeks post rads but Im sorry to say it is highly unlikely to happen for 98% of patients. The issues preventing normal eating that could affect patients in varying degrees are many. Those who have had major mouth/neck surgeries, either dry mouth or an over abundance of thick gunky mucous thats ropey and extremely difficult to get out of the patients mouth/throat, painful mouth sores, swelling, no appetite after a bite or 2, swallowing issues, trismus (limited range of motion reduced mouth opening), sense of taste severely changed with everything tasting burnt or like cardboard, lack of saliva, thats just naming a few of the most common issues, unfortunately there are more side effects than the few Ive mentioned.

Being a chef, you are able to think about different recipes that will greatly help your eating. Ive found purees are so much easier to eat than just mashing something with a fork. Almost all patients will have issues with flavorings and spices after rads. It will take a while before you can easily identify all the common spices and be able to enjoy them again. For most, even salt is bothersome. For me, everything tasted overly salty and burnt... even opening a brand new water bottle to sip was a challenge to get down. If I hadnt opened it myself I would have been convinced someone added salt and a burnt flavor to the water. Thats how overly sensitive most post rads patients sense of taste is for several months after completing rads. For some this hurdle is too great to get past and they are not able to eat normally for most of their 2 year recovery. Im hoping your profession will make it so much easier for you to eat again. Just in case you need it heres a list of easy to eat foods. Its mostly about texture after rads, but the list is foods which are smoother and a little more bland than how most people eat and they are mostly easier to swallow as well.

You're just beginning the recovery phase which is on its own timeline. Nutrition does play a huge part in recovery as it did during treatments. Substantial weight loss means you are heading towards malnutrition and dehydration which can become a very serious condition very quickly. I spent too much time getting hospitalized several times and suffered greatly for my low intake and not meeting the daily minimums. The better you do adhering to the minimums of 2500 calories and 48-64 oz of water every single day, the faster your recovery will be. These numbers are the bare minimums!!! Since you have had significant weight loss its ok to push yourself to take in more say... 3500 calories daily. Sounds like a tremendous amount doesnt it but its not, for cancer patients they desperately need the extra intake to rebuild their body no matter what their weight is. Cachexia is a serious problem for cancer patients losing weight. As with any change or anything new, always check with your doc first!!! Also ask the doc about adding high protein whey powder to your diet as protein helps speed healing.

Hope everything I provided helps!!! Hang in there!!!

Cachexia ---- muscle - weight loss during rads

List of Easy to Eat Foods


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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