Hello Cindy,

I can't offer any better advice on the feeding tube than the above postings. I can offer my support for both you and your Mom. Being a caregiver takes a special person. I think you are one of them. Remember to take time for yourself as well. As stressful as it is you will need to have a clear mind to absorb all you will need to know.

Best Wishes, Danny Boy

Stephany,

I've been away most of the day and have to leave again soon to take my granddaughter to her session at The Caring Place, but I will post a reply this evening. I may also send you a private email.

Briefly, though, please don't worry too much about your mom's airway being blocked. If she starts to have trouble breathing, she can have a tracheotomy done for relief.

Rosie

I am a male and had a feeding tube (PEG) in my stomach one week prior to Treatment. I did not want them to put it in until at least my third week of radiation...However, they would not let me start until I got the PEG tube. I don't know how I would have made it without it, as I was too sore to drink water the end of my 2nd week. I am amazed at those who got thru without it, but have observed that most are usually very large guys with a lot of weight to lose anyway. It is no picnic, but getting it after treatment could be tougher.

good luck,

Weldon


SCC-Base of tongue, Stage IV, Rad with 3 chemo treatments. Clear for 2.5 years

Well I wasn't a large guy, at 5'6" and 169 lbs going into it. I dropped to 109 lbs after treatment was over. I did it without a PEG, but it was VERY difficult so I am not advocating this. I am happy with my new weight of 145 lbs.
It wasn't the weight loss that was the problem - it was the atrophy of all of my muscles and the time required to get upper and lower body strength back to an acceptable level. We can all stand to loss the fat.

Congrats on 2 1/2 years Weldon - I'm right behind you.

Stephany - they can increase the (Fentanyl AKA Duragesic) patches to 300 mg if necessary.

Iressa may be worth trying - it is supposed to have few toxic effects as it targets the EGFR in the tumor cells themselves. Please note that only 10% of people who take Iressa have any response but those that do have had rather dramatic responses. Total cure in some cases.

Me too was just a medium-sized woman at 5'4" and 116 lbs when treatment started. Eating became very painful when I was in the middle of treatment. The doctor suggested a nose feeding tube when I lost 10 lbs in a week but I was scared of the idea of getting a tube through my nose. If the PEG tube had been an option then, I might have thought of getting one. Yet I am very happy that it wasn't an option because it turned out that I could make through the whole treatment without any feeding tube. The doctor prescribed some medicine that numbed my mouth before I took my meals and it did well to reduce my pain. I managed to eat 3 meals a day ( mostly congee and milk and icecream) and was discharged from the hospital when my weight became stable. I totally lost 16lbs and gained back my lost weight in 6 months' time. So I would think that the use of feeding tube has nothing to do with the size of a person since in Hong Kong most people are of a smaller size as compared with the westerners but only 25% of patients need a feeding tube during their cancer treatment.

Karen.

CINDY
Hi I can so relate to your frustration. My husband Bob finished treatment in October, he was as stubborn as they come when it came to any suggestions from me. I gathered a ton of support and information from this board and tried my best to stay one step ahead of what might be coming next, so I could somewhat be prepared. Thank God I did. He fought me on pain management because his nurses hadn't discussed it,(when they asked how he was he was always politely said fine so of course they didn't know how much pain he was in) he fought me on the constipation meds until he was completely miserable, he even had issue with the humidifier. He definitely wouldn't even look at this board. He did listen halfheartedly when I recieved emails from members of the board. I was so afraid to nag at him, I was terrified to upset him. Regardless, in some instances like the pain management issue I flat out told him I was calling the treatment center myself, and I did. I bought the senecot and put it by the sink with a note, and got the humidifier and set it up after he went to sleep, made him shakes from the info on the board and just brought them to him. It wasn't easy and at times he wasn't very nice. In hindsight he now realizes that without the information and support we got here we probably wouldn't have made it through intact. Now he actually denies being difficult about things. But I know better and he is on the mend so it was worth it. BE BRAVE, DO WHAT YOU FEEL IN YOUR GUT IS RIGHT, even if it means you call the Dr yourself AND KEEP COMIN HERE. I couldn't have done it without this community.
Denise

Denise,

Are we married to the same guy or is the selection just that narrow? LOL

I plug away at him and sometimes I even get things my way. But I know that someday he will understand that I wasn't here just to piss him off. :-)

Thanks for your post... it sounded so familiar.

Cindy

It is so nice to hear that people made it through this without and with a PEG tube ok. But, my mom had the surgery yesterday and started feeding today and the nurse in the hospital today showed me how to use it...But you are NEVER GOING TO BELIEVE WHAT HAPPENED TODAY. Early this morning before me and my dad arrived at the hospital, the doctor did NOT read my mother's chart and my mom had already doubled up on pain patches and the doctor prescribed yet another double dose...My moms blood pressure dropped and she stopped breathing..When the nurse FINALLY MADE HER ROUNDS, she saw my mother was blue and was able to save her..Now she is on monitors...I just arrived home at 10:30 and feel ok to have left her and I will return early in the morning....I almost lost my mother today...it is so hard..Right now, she looks weak, only 110 pounds and is suppose to get out of the hospital soon.....I am suffering so bad watching her suffer. I want so badly to make it all better for her, but I cant. She thought she was going to die today and wrote my dad a note to that effect. It was just awful... But thank God, I have my mother still, for how long, I do not know...But I love her dearly and will cherish the time I have left with her....When she gets home, I will look into getting home care for her.....I am so thankful for this forum here to help me through this..Thanks again to you all..My friends
Stephany

And my husband wonders why I micro manage his meds.

Stephany, you hold strong. You can do it and the nutrition that your mother will be able to get from this will make a marked difference. It is an amazing thing to see how a body can perk up when it has enough food and water.

I am so sorry that any of us have to go through this. It is so day to day and since I have lived mostly planning and talking about next week and next year it has been a difficult adjustment.

We are here whenever you need us Stephany. I cannot always promise that I will be emotionally stable :-) but I will be here. I agree that this place is a sanity saver for sure.

I have a little piece of good news today. They gave Harry his Cisplatin yesterday and we anxiously waited in anticipation of the sickness that followed last time. It only took 12 hours last month. But today, almost 24 hours later, he is doing fine. No nausea, no vomitting, and he is very happy. I cannot begin to say what a relief it is that so far the docs have been able to keep him from getting sick.

Doesn't mean he won't be sick tomorrow, but it is good today and that we celebrate.

Tell your mom to hang tough. Once she gets the nutrition in her that she needs she will feel much better. You are a strong person and you have her genes so I would guess that she is a pretty tough lady herself.

Hang in there and let us know how you are doing when you can.

Cindy

CIndy,

On my way to the hospital...Only have a second here..Thanks for your message. :-) And I am so happy to hear you are having a good day with your hubby. That is awesome..Hopefully, many more will follow and he will not get sick again....I will keep you and your family in my prayers...On my way to the hospital

Thanks again
Stephany