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#129585 02-14-2011 03:59 PM
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I have a 26 year old daughter that was diagnosed with Sarcoma stage 1. She is receiving chemo shots ranging from 1-4 per week followed up with Radiation and then another round of chemo. I'm scared and would like to talk with other survivors and family members.


Letitia Baker mother of beautiful 26 year old daughter who is my best friend. Squamous carcinoma Stage 1. T1N0N0
3910 #129591 02-14-2011 06:51 PM
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Hi 3910:

I am so sorry about your daughter and know you are very frightened right now. I promise, you have come to the right place.

Could you please give us a little more information regarding your daughter's type of Sarcoma? It's location. Is it intra-oral sarcoma? Sarcoma of the palate? If you could give a little more information, I think someone out here may be able to help.

I'm glad you found us.

Yvonne


Age 35
Superficial SCC lateral tongue
HPV(-), nonsmoker
Right lateral tongue resection 1/17/11 w/ Alloderm Graft
Proud mother of 2
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Sarcoma or Carcinoma?


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.
Brian Hill #129602 02-15-2011 03:53 AM
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I know that feeling, 3910. I would have gladly switched places with my son when he was diagnosed with his squamous cell cancer. He was only 33 at diagnosis and we found this forum when he had already started his radiation treatments. Finding this wonderful place and people here made all the difference in how we both recovered and survived the experience. My son did not have chemo, just radiation after the surgery and his experience may not be the same as your daughter's, but if you need to talk on a mother to mother basis, please just PM me (send private message).


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



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Thank you for your response. She was treated from Dec. 09-Dec10 for the pre-cancerous tumor. Then in January of this year it has shown up to be Squamous-cell Sarcoma 1. So I am thankful that they caught it so soon, but I was told that only 25% of the pre-cancerous tumors ever turn into cancer, and so unfortunately my daughter is in that percentage. So needless to say I am fearful that the survival rate, (even though this is Stage 1) that she may be in that 19% that doesn't survive. She has 3 small children and just having a hard time coping from day to day. I am trying to be as strong as I can, but that strength comes and goes. I realized that by reading from other survivors that I may have to be the one to give "Tough Love" and not let her fall in to not working, not exercising and constantly monitoring and reminding her to eat. That she may get mad at me, yell at me, etc, but as her mother I still need to act as the mother even though she is an adult. Is that what is needed. I just don't know. I started out being the one who was there for her, best friend type but I'm just not sure. Any help would be so helpful.

Thank you, Yvonne. Sorry to unload so much.


Letitia Baker mother of beautiful 26 year old daughter who is my best friend. Squamous carcinoma Stage 1. T1N0N0
3910 #129630 02-15-2011 01:13 PM
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Welcome to OCF, Yvonne. you will find all the support you need to help both you and your daughter get thru this. First of all, foget statistics!!!!! Its only numbers. They will make you nuts. Im a 3 time oral cancer survivor, I shouldnt be here but I still am. A big thing in her favor is her age, she is young and can handle things better than someone older like in their 70s.

I think you are confused in the role you will be playing. It sounds like you will be her caregiver. Is your daughter married? Any other brothers or sister? A list should be made of every person who has offered to help and their phone numbers. Even if its to take the kids to a movie or to McDonalds for lunch, it will help your daughter. Maybe someone can do her laundry one week, or some friends could cook the family dinner a few nights per week. Anything like that will make a huge difference in her life.

Things will get difficult. I was not able to work after about week #2 of radiation. I was so weak I also stopped driving for safety reasons. I spent alot of time in bed. Fatigue is a hard side effect to get over. She probably will not be able to work thru the treatments. Most people do not work thru it, its just too difficult. Same with exercising, she will not have alot of strength and doing any strenuous exercises will zap the energy she has. Of course if she is able to take walks or ride a bike with the kids that something else, Im talking about heavy duty working out. That will get to be too much and should not push her to overdo it.

Nutrition and hydration will play a key role in how she feels. If she gets enough calories and water daily it will make things much easier on her. She will need 2500+ calories and 48oz+ of water daily. More is even better, if she gets 3000 or 3500 calories its great just like if she can get 64 oz water thats great! It will help her to flush out the chemo from her body. Calories will be burned up very quickly while fighting this disease. Eating will become very difficult. Her taste will be altered. She may have to depend on a feeding tube which means no lifting children over 20 pounds.

I do not want to scare you with what I have written. I have told you how things are and it wont be easy. Its important that you know going into this how to help her. Make sure she gets the proper nutrition or she can wind up being hospitalized for dehydration and malnutrition. It would be a very good idea for your daughter to join OCF so she can see hope and read others stories. Many patients and their caregivers take anti depressants to help them deal with this. It doesnt mean anyone is weak or anything negative, it is a huge change that is happening and it must be taken care of, this can make her feel out of control of her life. This isnt easy but she will get thru it just fine. All the side effects will get better in time and next year this time she will be good!

Please ask any questions you can think of. Also it helps us if you would add a signature so its easier to respond to you. The signature is located in the my stuff tab, then profile, the box on the bottom is where you put the info.



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
ChristineB #129633 02-15-2011 02:35 PM
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Hi, 3910. I'm very glad that you've found this site. You will have so much information at your fingertips here and all the support anyone could ask for. Please know that I will keep your daughter and your family in my prayers. Take care.


CG/Mom: 5 1/2 years SCC upper palate,4 recurrences, surgeries, chemo & radiation. Mom went to Heaven 1/21/11.
ChristineB #129637 02-15-2011 03:27 PM
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She does have a boyfriend who helps with the kids. Thank goodness for him.

Right now during the day she stays with her grandmother, since I have to work, and then goes home to be with kids/boyfriend. I go stay with her about twice during the week, to help with kids and her. On the weekends I take all 3 kids to let her rest. Have asked her to take pain medicine on weekends when I have kids, to give herself a break, and she refuses. But what I have found is that she has a lot of time on her hands and she is getting depressed. (She was taking anti-depressants from the time she was 11 until she turned 23, due to eating disorder) So I don't think she will be accepting of taking those again. So I thought maybe her working (at a company that her dad and I started which she use to also work for us) a few hours a day would help her to keep her mind busy. Her grandmother helps clean her house and does laundry too.

I have a couple of friends that make her soup every couple of weeks. I have set up a prayer time (the same time every day, for friends and family) to get friends and family involved. I also send out weekly updates to family and friends so she doesn't have to repeat everything, and have asked them to send her messages, jokes and inspirational things. I will be sending orange ribbons (her favorite color) to family and friends to display around a tree, rear view window of car, or somewhere in there home to keep her in their thoughts and prayers.

She can't eat because of all the sores in her mouth and has been told that if she loses 5 more pounds then they will put in a feeding tube.

So with all of that said, I certainly do not want to hurt her recovery in anyway. So when I say tough love, I am not asking her to exercise at a gym or to do heavy lifting or walking even around the block. I am certainly not asking her to work 8 hours a day or even 2 hours a day. I am not constantly putting food next to her and watching her eat. I am simply saying that she should get out of the house and sit for 10 minutes outside. Fresh air, walk to the mailbox which is 20 ft from her back door. That she perhaps come in and sit in a recliner I have in my office and work on the computer for an hour take a nap and then go home. So please do not think for a minute that I am not giving her support, love and understanding of what she is going through. I do think that fresh air, sunshine, and interacting with others to a point (certainly not to expose her to germs and things that could cause her to fall, get cut, etc.) can do a person good.

I am one of the most loving and giving people around her and always have been. I am strong around her, and do not let her see me waiver in my strength. When I am alone that's when it's okay for me to break down. And when she cries and is scared, I let her know I am scared too, but that we will somehow get through this one day at a time. When she says she can't go on, do I let her continue to talk that way, absolutely not! When she says she doesn't want to talk with another agency about helping her with her bills, do I say that's okay you don't have to. When she has given up on life do I say that's okay. Absolutely not!

I am simply trying to give her encouragement that she can do these things, within reason, and if it is too much she shouldn't do it, but she should at least try. She might actually feel a little better.

So are those things I am asking her to try, is that unreasonable?

Thank you for your message. If my message sounded uncaring, harsh, non supportive or trying to make her do things that are unrealistic, I'm sorry. That is not what I meant at all.

Thanks for listening to me.

Letitia Baker. I did change my signature to reflect her diagnosis, but it probably could contain more information as well. Thanks for the input.


Letitia Baker mother of beautiful 26 year old daughter who is my best friend. Squamous carcinoma Stage 1. T1N0N0
Brian Hill #129638 02-15-2011 03:29 PM
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Sorry for the confusion. This is all so new to me. She has squamous carcinoma Stage 1. Surgery is a last resort because it could hamper her ability to eat, swallow, and talk. So she is having 16 weeks of Chemo.

Thanks, David.


Letitia Baker mother of beautiful 26 year old daughter who is my best friend. Squamous carcinoma Stage 1. T1N0N0
3910 #129643 02-15-2011 05:07 PM
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Your post sounds like you are a loving a thoughtful mother and caregiver. Its not easy watching someone you love have problems like this. You must be very strong to not break down in front of your daughter.

For her sore mouth, she should be rinsing several times per day with 16oz warm water, 2 tsp baking soda and 2 tsp salt. If it burns then go down to 1 tsp salt or omit it. There is also something called magic mouthwash. It has several variations. Its a prescription medication, mine was lidocaine, malox and benedryl. She would shake the bottle real good then take about an ounce in her mouth and swish it around for about 20 seconds. It should numb her mouth long enough for her to be able to eat decently. Ask her doc for a prescription. These things will make her life so much easier. Its very difficult to eat when your mouth hurts. She must continue to swallow even if she gets a feeding tube. Her muscles will very quickly 'forget' how to swallow if unused.

Keep up the good work encouraging your daughter. Never give up!


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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