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#195292 - 10/24/17 06:38 PM Re: new here and recently diagnosed [Re: Camille]  
Joined: Apr 2017
Posts: 39
Camille Offline
Contributing Member (25+ posts)
Camille  Offline
Contributing Member (25+ posts)

Joined: Apr 2017
Posts: 39
Hi Christine,
Once again, thank you so much for getting back to me so fast with my questions. I am open to any and all tips and guidance you can give me and will appreciate it very much. I know I have a long, hard, road ahead of me and the unknown is so scary. The worst part for me right now is I am so hungry and want to eat so bad, but my tongue is so sore it is not allowing me too, I am so tired of Ensure, yogurt, pudding, etc. already. I just want to be able to eat a meal so bad. The surgeon said the tumor was very ulcerated on Saturday and that is what is causing so much pain. What I wouldn't give for a big old cheeseburger right now! My stomach is still very sore today and where they put the port in is all black and blue. I look like I went 12 rounds in a fight and lost lol! Anyway, thank you for your concern, and I would really appreciate any and all advice you have time to share with me,
Camille


February 2017 saw 2 different dentist for ulcer on tongue. Was told by both it was a bite
March 10 biopsy done by oral surgeon
March 17 biopsy results are keratanizing squamous cell carcinoma
May 3 partial glossectomy and right modified radical neck dissection
May 8 post op appt. given news in surgery 34 nodes removed from neck, 1 with cancer but still encapsulated and had not spread
drainage tube out and feeling pretty good!
May 26 appt. with radiation oncologist- No rads needed
#195293 - 10/24/17 11:06 PM Re: new here and recently diagnosed [Re: Camille]  
Joined: Jun 2007
Posts: 9,745
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: 9,745
PA
The only thing I can tell you about helping to recover from your most recent surgery is it takes time and some good strong pain meds. If your doc gave you any prescription pain meds, take them and get some relief. I remember how sore I was when I first got my feeding tube. I also had a port done at the same time. It was supposed to be outpatient but the hospital kept me as I was in so much pain.

Now is the time you should be eating as much as possible, especially all your favorite foods. You do not want to go into rads having cravings. Heres a list of foods that are easier to eat. Most are fairly mild without very many spices. I suggest at least giving some of these things a try. I originally started the list for patients who were just finishing rads and trying to relearn how to eat normally. It also works for those with very sensitive mouths. Im sure some of the foods you should be able to eat, probably not everything on the list.

Hang in there!!!

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
#195322 - 10/31/17 06:31 PM Re: new here and recently diagnosed [Re: Camille]  
Joined: Apr 2017
Posts: 39
Camille Offline
Contributing Member (25+ posts)
Camille  Offline
Contributing Member (25+ posts)

Joined: Apr 2017
Posts: 39
Hi all,
Well started my treatments yesterday. Had my first round of radiation yesterday and just got back from today's. 2 down and woo hoo only 33 more to go. The worst part of the radiation for me is having to bite down on that tongue quard as my tongue is so swollen and painful and it hurts like heck. Had my first chemo yesterday also. I am having Cisplatin once a week for 7 weeks.Can anyone here tell me what to expect with this? I did have a patient comment to me yesterday while I was sitting there getting my chemo "your hair is so pretty and thick and long. It's a shame you are going to lose it all". I appreciate so much any advice or tips anyone wants to share with me that has traveled this road as everyone here has shown me such kindness through the ones that have been so patient to answer my questions.
Camille


February 2017 saw 2 different dentist for ulcer on tongue. Was told by both it was a bite
March 10 biopsy done by oral surgeon
March 17 biopsy results are keratanizing squamous cell carcinoma
May 3 partial glossectomy and right modified radical neck dissection
May 8 post op appt. given news in surgery 34 nodes removed from neck, 1 with cancer but still encapsulated and had not spread
drainage tube out and feeling pretty good!
May 26 appt. with radiation oncologist- No rads needed
#195323 - 10/31/17 07:55 PM Re: new here and recently diagnosed [Re: Camille]  
Joined: Jun 2007
Posts: 9,745
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: 9,745
PA
First... tomorrow you can go thank that "overly kind" stranger who told you your going to lose all your hair that they are WRONG!!! Your hair will be just fine. Cisplatin does NOT cause hair loss. Not all chemos do. All you should lose is a small circle near the back nape of your head where the radiation beam exits. I think my bald spot was about the size of a nickel. The only way it was seen is if I put my hair up or in a pony tail.

Since you are now officially into your rads w/ chemo treatments, its vitally important to make certain you hit your daily minimums of at least 2500 calories and 48-64 oz of water every single day. Water is even more important on chemo days and to be safe the day after as well. Chemo is hard on the kidneys so you want to flush that poison out of your system. I cant stress for you to focus on your intake enough. Every single day you need to make a point of hitting those minimums. If you can push to 3000 or 35000 calories every day that will only make this whole thing easier on you. I would hate to see you fall into the habit like I did of playing catch up. I wouldnt hit my minimum thinking Id make it up tomorrow... but, tomorrow never came. I quickly fell into a routine of skimping and that led to dropping significant weight and great suffering. This is why I am such a nag to everyone about their intake. I do not want to see anyone struggle and suffer like I did. Every single day your main focus should be meeting your daily minimums of calories and water intake.

As far as pain goes, make sure you relay all this to your oncologist. You do not want to suffer in pain and not say something. Being in pain is actually unhealthy for a patient, it makes everything so much more difficult than it has to be. Your doc can give you pain meds. They can also set you up to get extra hydration in the chemo lab if you are not taking in at least 48 oz of water every single day. All it takes is a prescription from your doc. Your doc can also give you a prescription for magic mouthwash which could be one of several formulas. I had lidocain, malox and benedryl which worked very well to temporarily numb my mouth. Magic mouthwash can help you eat or maybe even for the times you need to hold your mouth guard. I would ask your doc about it and if they think it would help you not be so uncomfortable holding the mouth guard during rads.

Hang in there! Take it day by day and before you know it you will be finished.



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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