#71762 03-21-2008 03:48 PM | Joined: May 2006 Posts: 20 Member | OP  Member
Joined: May 2006 Posts: 20 | Just curious if anyone has been in my shoes...
I am pregnant with my first- we are thrilled. I am cancer free after Stage 1 tongue cancer diagnosis 2 years ago. my main challenges are still- chronic dry mouth and neurapathy pain. The pain is as a result of my radiation treatment. I am weaning off the Lortab for the pregnancy. but i am worried- how will i deal with the pain? anyone had to deal with the same thing? have not tried accupuncture but I may need to consider it.
Female, 36 yrs. old. Stage 1 tongue cancer; no lymph nodes; surgery & radiation
| | | | | Joined: Dec 2007 Posts: 138 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Dec 2007 Posts: 138 | Congratulations on your pregnancy! What a joy it will be for you, especially after all you've been through! I can't give you any advice about the pain. Maybe you can talk to your doc about that. However, I would like to know...are you able to eat normally with your chronic dry mouth? Do you have any limitations as to what you can and cannot eat? For example, what are typical meals throughout your day?
Nine years out. New normal with limitations, but surviving and living life to the fullest.
| | | | | Joined: May 2006 Posts: 20 Member | | OP Member
Joined: May 2006 Posts: 20 | Thank you!
I do have limitations with what I eat. First and foremost, it takes me 30min - 1 hour to finish a regular meal. I have to eat very slowly unless the food happens to be soft like mac & cheese. I have to water by my side. I have to completely avoid spicy foods (even a little spicy.) my mouth will burn and sting painfully. Any crunchy type stuff like a salad i have to eat carefully.
breakfast is typically a carnation drink and toast. If i eat cereal, I have to let it soak for awhile to make it soggy.
Lunch- i will eat a salad or sandwich
Dinner- i eat steak, pasta or casseroles.
but they all have to be accompanied with a drink or I cannot even swallow or I may choke.
I am still waiting to hear back from my pain mgmt dr. I honestly don't think they know what to do with me!
Female, 36 yrs. old. Stage 1 tongue cancer; no lymph nodes; surgery & radiation
| | | | | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | Congrats on your pregnancy-that's very exciting news. I'm curious where your neuropathy pain is? Is it in your mouth or face (I am wondering because I think I have some of that)?
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
| | | | | Joined: Dec 2007 Posts: 138 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Dec 2007 Posts: 138 | It looks like you have a pretty good diet going on so I'm sure your baby will be fine. How in the world you are able to eat bread is beyond me! You go girl! Are you taking vitamins as well? Oh, did you have a peg tube at one time? If so, how long did you have it in?
Last edited by x28007; 03-22-2008 04:24 AM.
Nine years out. New normal with limitations, but surviving and living life to the fullest.
| | | | | Joined: May 2006 Posts: 20 Member | | OP Member
Joined: May 2006 Posts: 20 | the neuropathy pain is on the tip of my tongue and right side of my jaw (on outside starting by by ear to my chin). I only had the right side of my primary salivary glands damaged (they were able to save the left). The cancer was on the right side of my tongue. yes i have been taking vitamins regularly.
No I never had a peg. I was adamant about not getting one. But I will say when I was towards the end of my radiation, I thought I was going to have to cave. I was utterly misearable and couldn't eat or talk. But I managed to drink ensure when it counted. I did 6 weeks of radiation.
Female, 36 yrs. old. Stage 1 tongue cancer; no lymph nodes; surgery & radiation
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Congrats on your pregnancy. I am always inspired by people who accomplish wonderful things after cancer. Best of luck to you.
ChristineSCC 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  | | | | | Joined: Dec 2007 Posts: 138 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Dec 2007 Posts: 138 | I'm a bit confused. You say that only the right salivary glands were damaged and that the left side was saved. Yet you also say that you suffer from a chronic dry mouth. Does that mean that the left salivary glands are not working even though they were saved? Don't you have any wet saliva at all from the left glands?
Nine years out. New normal with limitations, but surviving and living life to the fullest.
| | | | | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | Banker, That neuropathy pain does sound similar--mine is tip of my tongue and tingling around cheeks and jaw on left side of face ( my cancer was on the left). I basically just take over the counter pain meds for mine although often that is not enough to entirely get rid of the pain. I have not tried acupuncture for it--if you do decide to try it I'd be interested in how it works for you.
Congratulations again on your pregnancy. It must be nice to go in to see doctors now about a welcome and joyous medical condition!
Nelie
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
| | | | | Joined: May 2006 Posts: 20 Member | | OP Member
Joined: May 2006 Posts: 20 | x28007, I do have some saliva since they were able to save the left primary salivary gland. but i still have chronic dry mouth, which is what the dr.s said would happen. I have all of the same symptoms as others with chronic dry mouth but to a lesser degree. For example, my tongue sticks to the roof of my mouth when I sleep and I have to see a dentist every 3 months vs the typical 6 to get my teeth cleaned and I need water to go with my food,etc.
thanks everyone for the nice thoughts.
Female, 36 yrs. old. Stage 1 tongue cancer; no lymph nodes; surgery & radiation
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