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#33881 02-28-2005 05:49 AM
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Hello Everyone,

My mom cant swallow now. She was very stubborn about getting a feeding tube. Now, she has no choice. How does it work and how soon can it be inserted? She has an appt today and I am worried. Are there bad side effects to it? Also, I cried because I was worried when she told me she couldnt swallow that maybe her airway could get blocked. Is that a concern as well? Are there pointers for the feeding tube that I can use for my mom to help and any potential problems and how you have helped that? Thanks again so much!
Love
Stephany


Stephany.Daughter of mother who passed away 3/26/05 from Recurrent Gum Squamous Cell Carcinoma. She had 3 surgeries, and 6 weeks radiation, and then passed due to infection. I miss her very much. She was 65 years young when she passed. Love you Mom!
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Stephany, there are different types of feeding tubes that work in similar ways. Mine was a direct tube into my stomach through the skin and tissues with a 6-8" tail and I was given a large injector thing for putting food, meds, etc., into the tube. It also had a stopper that could be used to push things through if they got stuck. Try to avoid anything that might get stuck in the tube. Stick to liquids only for the first bit. If you have a problem, Pepsi worked on mine to free up any blockages. Also used baking soda.

Generally, the tube can be inserted by a doctor as soon as you can get a schedule to have one inserted. The worst part about the insertion is when they put the camera feed down your nose and past your voice box into the stomach so they can see what they are doing. The actual insertion is no big thing.

I had no side effects at all. Just have her keep it out of the water when showering for the first 10 days. After that, normal showering is OK. Don't suggest baths or swimming, though, as soaking it can cause problems I've been told.

I don't think the airway is an issue if the throat is not working. Have mom breathe through her nose and it should be OK. Of course, I'm not a doctor, but have not heard of anyone having breathing problems because of a feeding tube.

Try to keep her drinking if at all possible. Some on the site have had issues with swallowing after not using the mouth for a while. I used only the tube for about 4 weeks or so as I couldn't swallow at all due to the rad treatments, not even my own saliva. But I had no long term problems and am swallowing everything these days. In fact, I have regained a fair amount of weight and am now watching what I eat.

Other than the stopping up of the tube, I had no problems with mine. Try not to put anything but liguids through the tube and you should be alright. God bless.


Regards, Kirk Georgia
Stage IV, T1N2aM0, right tonsil primary, Tonsilectomy 11/03, 35 rad/3cisplatin chemo, right neck dissection 1/04 - 5/04.
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stephany, you asked alot of questions i had. they are supposed to put my feeding tube in tommorrow. im glad they are doing it now while i still feel good. i think once your mom gets some nutrition she may feel better. i wish her and you all the best!! kirk thanks for your informative answers. your friend, tracey

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Stephany,
I had my tube inserted during the fourth week of treatments. It took a week to schedule the insertion after the decision to get one.

Because my throat and mouth was already pretty sore because of the treatment, I asked that they use a pediatric catheter (or whatever it is called) to insert the tube because it is narrower and didn't rub against the radiated tissue as much. The procedure to install the tube usually involves three 'staple' like metal things that hold the stomach close to the abdominal wall so that it doesn't move once the tube is installed. This can lead to some pain immediately after the procedure.

I was told to wash around the outside of the tube where it met my abdomen with antibacterial soap and warm water each day to prevent infection.

Although the procedure was a bit of a hassle, having the tube was a big improvement in terms of nourishment. It was so much easier to stay hydrated and nourished.

I had a big plastic injection tube that I used to pour Ensure or Boost into and let gravity drip it into my stomach. Also available was a bag that would hang like an IV bag that dripped more slowly than the tube and could be used while sleeping. I never tried it but it might be helpful to your mom if she is sleepy and wants to get some nourishment while asleep. Best wishes, Sheldon


Dx 1/29/04, SCC, T2N0M0
Tx 2/12/04 Surgery, 4/15/04 66 Gy. radiation (36 sessions)
Dx 3/15/2016, SCC, pT1NX
Tx 3/29/16 Surgery
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Kirk, Tracey and SHeldon,

THank you so much for your messages. It was very helpful. What happened today was that my mom was admitted to the ER and a PEG tube was in place by 2 today. I just arrived home from the hospital after being with my mom all day and night. WE got the CT results and it stated that there is a probably recurrance of cancer to the floor of her mouth and neck...something like that...So, it does not look good for her. Her lower lip is so swollen and ulcerated.....I feell so bad for her. She got a PEG tube..So that is just in her stomach right? They are starting feeds tomorrow. She is still in the hospital..Thanks for the pointers regarding the tube.....She is in so much pain that I just am having a terrible time seeing her suffer like this. Is there still hope that it could just be an infection and with the nutrition she could maybe fight htis. THey have her on an IV antibiotic drip now....So hope that helps too. She has osteomyeletis in the bone which has caused this major infection....

Tracey, good luck with the tube tomorrow. You are in my prayers/

Kirk, hope youa re doing well...and Sheldon, thanks for the advice. I will look into that.

Thanks again...I just wish my mother would get better..But she keeps getting worse and I cry every day....and it is so hard not to cry in front of her. Is it bad to cry in front of her? I have to fight back the tears all day and night that i am with her..It is so hard..Then I think, why cant we show emotion???? Is it really that bad to do? I am in pain watching her and she must see that.....I try to be strong for her...and I try not to cry in front of her..But cry the minute I leave.....This is so hard. THanks again for your kind wishes

Love
Stephany


Stephany.Daughter of mother who passed away 3/26/05 from Recurrent Gum Squamous Cell Carcinoma. She had 3 surgeries, and 6 weeks radiation, and then passed due to infection. I miss her very much. She was 65 years young when she passed. Love you Mom!
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Stephany,

Your post was well timed. The doctor was all ready to do his tube this week while he is in the hospital and when the doc said something about it today he backed out. He said that the docs told him that it wasn't good for men to do.

I think that the drugs are seriously affecting his mind because none of his doctors have ever said anything.

But all my arguing met with resistance so I am not going to bug him about it. I am learning that there are some lessons that some very hard headed people just have to learn on their own.

I am a bit angry about the whole thing because I know what will happen. He is not really eating much now and if it weren't for the home IV the doctor ordered he would have already withered away.

There is no doubt in my mind that he will need the tube soon and it will mean yet another trip to the hospital which could be avoided if he would just do it now. Also I know that he is going to wait until things are so bad that the whole procedure is going to be more painful than it has to be.

I think I am really gaining an understanding about what it has been like for you in this battle with your mother over the past few weeks.

It certainly leaves one feeling helpless. Glad to see you are back. I wish your mother all the benefits that she is bound to receive from her tube.

Let me know how it goes. I might need some amunition. I have told Harry about you all here on the site and I have tried to get him to look at it but he doesn't want to. He doesn't seem to care much for talking to people who have been through this. Why? I have no idea. It always makes me feel better.

I have been told that it is a denial thing but I am certainly no expert.

Talk to you soon.

Cindy


Caregiver to ex-husband Harry. Dx 12/10/04 SCC stg 3, BOT with 2 nodes left side. No surg/chemo x4 /rad.x37(rad comp. 03/29/05)Cisplatin/5FU(comp. 05/07/05)-T1N2M0-(cancer free 06/14/05)-(12/10/06) 2 yr. Survivor!!!
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Stephany,

I'm glad your mom finally got a PEG, just sorry it was under these circumstances. The next thing that must be done is to get her pain under control. Please make sure the doctors address this ASAP. I'm assuming she will be in the hospital awhile? Hopefully at least a few days so they can get the pain under control and get some nourishment in her.

You asked about the possibility of your mom's airway getting blocked. If you meant blocked by the growth of a tumor, yes it is possible. Or at least it can feel that way. Heather had a tracheotomy done when they did the biopsy to confirm her recurrence. She had been feeling like she couldn't breathe right for a couple weeks previously, so the surgeon left the trach tube in. He never actually said that the tumor could block her throat, but it was implied.

You asked whether this could just be an infection and your mom could still fight this. I'm afraid even the doctors probably can't answer that for sure and I'm cetainly no medical professional, but I don't think it sounds like it is only an infection. From your mom's condition, I think the CT results are correct and there is a recurrence. I'm sorry if that sounds cold, but I have been following your posts for quite awhile now and I see so many similarities to Heather's case that I just want to cry. I would never tell you to give up, but I think the reality is that your mom will not survive this. As long as she is strong enough to receive chemo or something like Iressa, she may have some relief from her symptoms and have a short reprieve, but at this point, chemo would probably be mainly a palliative measure. It can prolong her life some if it can shrink the tumors, but it will be hard for her to continue it if she doesn't get in better shape. Chemo can be really hard on the body and a person can only stand so much of it.

As fas as not crying in front of your mom, I totally understand. I tried not to cry in front of
Heather or even in front of the rest of the family. In retrospect, I should have let myself cry in front of them, at least once in awhile. I think the time has come for you to share your grief with your mom. As you said, she must know that this situation pains you and it might be healing for you both if you acknowledged your fear of this together. If there is a recurrence, the time may soon come when you have to discuss end-of-life issues. It may be well that you get your feelings in the open now and get past that first hurdle. It is never easy to admit that your loved ones are mortal and the thought of losing them is a pain no one should ever have to bear, but unfortunately that is part of the reality of this life of ours. I know I have thrown a lot at you and you may well want to slug me for saying it, but you should at least consider the possibility that medicine has done all that it can for your mom. I am sorry to be the one to say these things. I truly hope I am wrong and there is no recurrence and you and your mom have many years together.

Rosie


Was primary caregiver to my daughter Heather who had stage IV base of tongue SCC w/ primary recurrence. Original diagnosis August 21st, 2002. Primary recurrence March 18th, 2003. Died October 6th, 2003.
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In case Cindy and Rosie are on line right now, I am going to respond to Cindy first and then Rosie :-)
steph


Stephany.Daughter of mother who passed away 3/26/05 from Recurrent Gum Squamous Cell Carcinoma. She had 3 surgeries, and 6 weeks radiation, and then passed due to infection. I miss her very much. She was 65 years young when she passed. Love you Mom!
Joined: Jan 2004
Posts: 134
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Cindy,

Wow...You are experiencing what I experienced with my mother. But there is only so much you can do. My mother was very stubborn as well and finally agreed to the feeding tube when she could no longer swallow and we had to admit her under emergent circumstances. Cindy, my mom would write me notes (because she has not talked in a while,...she cant) that her health decisions are up to her. I tried to convince her for months that she did not have to go through the agony of trying to eat but she kept at it...My twin told me that she wanted to keep what little dignity she had left..So I did not push it too badly.....Then, she took me aside and said she was ready..But then she would not go for the procedure until it was a little late....But Cindy..She is not in more pain because of it if that makes you feel better....The procedure for my mother was not bad...I am sorry if I gave you that idea....She has lost weight..In fact 5 pounds in 5 days...She is now 110 from 240 or so....with no feeding tube....The pain is caused by her recurrance of cancer, not the lack of feeding tube....or the feeding tube....If that makes you feel better.....

Also, I found a wonderful lady from this web site...I would email her daughter here and she only emailed her a couple of times....They have the same doctor here and live a few miles away from one another..My mother had a tough time as well with that...Just be patient and make suggestions..That is my advice..When I tried to push my mother, she would take the opinion..I will do what I want when I want, etc etc. You are a great wife and caregiver but it is his life..I had to remind myself that of my mother..In fact, she wrote me a note just yesterday that I was too bossy and to stop asking her questions LOL...like when I would ask if I could get her anything or if she needed anything....

But. I have to say..My mother should have gotten this tube a long time ago..The pain and frustration with trying to eat for the last six months has been unbearable for her.....She even bought the 400 vitamix product to help her blend, etc....We tried soups and everything..Nothing worked..She couldnt get anything down.......

Hang in there Cindy..and please let me know how YOU and your husband are doing..It is so hard on the caregiver Cindy...How is school coming along??? I actually went to my office..Drove an hour and a half and as soon as I arrived, my father called to tell me my mom was in ER so I drove an hour back to the hospital....I have a lot of work to do and am trying to juggle it...BUt, Cindy, please try to keep school for yourself.....When I am at work it is a good distraction for me...

Question: Why is a tube bad for men to do??The men in here I have posted with have never told me that..Maybe I just dont know..Maybe you could try to show him some posts from the men in here that have had success with the tube..Maybe that will help.....:-)

Hang in there CIndy..Believe me..I cried all day and night..When My dad handed me the CT results, I just cried..Not in front of my mother...I couldnt believe it....My poor mother...3 surgeries and 6 weeks of radation to have 3 recurrences....She just cant get a break.....Now she is sitting in a hospital bed now...And I am suppose to go to work..But I will go for an hour or two and then spend the rest with my mother...It is so hard.....

Good luck CIndy..and please let me know as well..And I am glad I am back too :-)

THanks again and God Bless you CIndy

Stephany


Stephany.Daughter of mother who passed away 3/26/05 from Recurrent Gum Squamous Cell Carcinoma. She had 3 surgeries, and 6 weeks radiation, and then passed due to infection. I miss her very much. She was 65 years young when she passed. Love you Mom!
Joined: Jan 2004
Posts: 134
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Rosie,

Thank you for your post....You were not cold at all..You were just realistic and that is what I need to hear..The doctors are saying what you are...That there is nothing that can be done to CURE her...But only pain management.....But the patches she is wearing arent even helping.....Rosie..My heart goes out to you as well..I feel so bad for HEather and for what you and her went through...My goodness...I am speechless right now.....

Rosie, what do you suggest to me for my mom??? What kind of pain management, etc....I am just so lost right now...And you are so right about everything.....I feel sometimes why not cry in front of my mother...And the thought of losing her is the worst pain I have ever had to experience......So far in life ( I am 40 now)...

We canceled the biopsy...The CT was pretty definitive about a recurrance..we cant know for sure without a biopsy but it looks that way, and we dont want our mother to suffer at this point..Chemo is not an option..She is way too weak and has a nasty infection..Osteomyeltis in her jaw bone right now..So she cant do it anyway..The doctor did mention Iressa but that is my mothers decision.....She has fought so hard....But she has suffered terribly along the way....and if she could be cured, then great...But I am afraid to prolong her suffering...That is not fair to her..It is completely 100% her decision...But I will support her anyway she decides..But she seems to have given up....She is tired...and weak.....

Rosie. this is a HARD QUESTION....But Rosie, the doctor 2 months ago told my mother she had less than a year to live..Since that time, she has really declined healthwise...You said my mom and Heather's cases were very similar...So, from your experience ( I know you are not GOD and dont have a crystal ball)..But I am curious....WHat can I expect..and how long do you think my mom can keep on fighting this? I am just curious as to what to expect here.....Is the pain going to get much worse?? Will her airway be blocked?? All these things concern me and I am scared....The unknown is frightening and that is what I am going through.....I am scared for her....I am more scared of the suffering than losing her right now......I am trying to be a good daughter and do everything I can to try to make this better but it just seems to get worse..I try and try and try.......But maybe I just need to accept the fact that it isnt up to me an I cant fix it...Im not God....

Thanks Rosie so much again...I just love ya

Stephany


Stephany.Daughter of mother who passed away 3/26/05 from Recurrent Gum Squamous Cell Carcinoma. She had 3 surgeries, and 6 weeks radiation, and then passed due to infection. I miss her very much. She was 65 years young when she passed. Love you Mom!
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