I know you guys did it -I just don't know how.I'm in the third week of chemo(cisplatin 1x aweel and amofostine every day)and RT.I feel so sick and nauseated.I have already lost 20 lbs.I can't hold much down but water and sometimes not that.I'm going to get a PEG tube tomorrorrow.I"m hoping that will help......Susanlaura

Oh Susanlaura, hang in there. Your words take me right back to exactly where you are, and I made it. So can you. There are medications for the nausea, so tell your nurses/docs that you need something better. When my chemo really made me urpy, I was given some stuff that took care of it and pretty much knocked me out, but my husband was able to put food in the PEG, so that worked out. Good for you for getting the PEG. You need to slow down that weight loss because you need the energy to combat the horrible assault being committed against you. And remember, not every day will be as bad as today. You can make it, you really can! I am sending some special positive energy your way.
Joanna

SusanLaura I know exactly what you are going through. After three weeks of radiation and my second round of chemo I was so sick I could not eat or drink anything for 10 days. I also lost about 15 pounds during that timeframe. I started my treatment deadset against a feeding tube, but at during this timeframe I practically went in and demanded one. I used a drug called Zophran for my nausea which seemed to help. It's very expensive so check that your insurance will pay for it. I would not recommend the tablets that dissolve on you tongue though as the even the taste of the medicine would cause me to throw up. One very important thing to watch for is that you don't get dehydrated. This happened to me three times. If you start getting the shakes or feel dizzy when you stand up, tell you doctor immediately so they can get you on some fluids (via an IV line). Make sure your doctors are aware if you are not getting enough nutrition. The worst thing that can happen is to stop your treatment because you are malnourished. I know this does nothing for you right now, but hang in there, most of us have gone through what you are experiencing and trust me, there will be better days ahead.

Take care,

Randy Z.

SusanLaura,

I'm not into the treatment phase of things yet so I can't offer any advice or encouragement about how to get through it.

What I can offer is my promise of prayers for you.

I made the decission to tell the people of my parish this past weekend (and just in time too the rumors started sooner then I thought). In telling them what little I know I did point out that I was going to experience some weight loss. But at 5'10 and 270 lbs I'm pretty sure I have it to loose. It is something to be concerned about though so I plan on following whatever advice my doctors have for me.

One of my older parishioners had a similar experience with weight loss due to his cancer treatments and shared his experiences with me. He did say: "Fr. I have bad news for you....it took a little time but it all came back...with extra!" So if you didn't need to loose the weight just keep in mind its only a temporary thing. When you are through treatment and back to your regular self again the weight will return.

Peace,

Fr. Mike

Hang in there SusanLaura - there will be tolerable days ahead. Be sure to let them know about your pain levels so they can adequately medicate you. The further away you get from chemo the better you will feel also. I can't comment on Amofostine since I had IMRT and didn't need it.

The PEG tube won't stop the nausea. Zofran is only effective for the first 72 hours then you must switch to another anti-emetic. I ended up using Compazine suppositories because I couldn't keep anything down (sometimes I inserted an Ativan into the suppository also - I also was nauseated by the taste of Ativan when taken sublinglily).

I lost over 60 lbs myself - most of it related to reaction to the Cisplatin. Thank God I only had 2 treatments!

Constipation can also cause nausea and the same symptoms so be sure to keep a close eye on that.

Your experience sounds a lot like mine but I am 110 days out now and feeling pretty good, food tastes good and I have a good appetite -you'll get there!

Tip: If you need rehydration have infusion do it rather than emergency -there's about a 4 hour time difference!

Hi susanlaura, how things going now?
You are probably starting your fifth week of RAD by now...you will be done soon. Is the PEG tube helping out? I put almost everything in mine (except tacos...couldn't blend 'em enough to make 'em fit through the tube). The docs couldn't get the nausea under control for me, so they stopped the Ethyol. I wish I could have kept on it. Hang in there and beat this thing!!
O-O

Just finished week 4.I spent week3 in the James,getting Peg.Still losing weight,but much slower and they have increased anti-nausea meds.Thank God! Ifeel a little more like part of the world!Throat is closing up some but the pain meds are helping that,I was able to go to Sierra's VBS awards and hear her sing in choir,so that was great! Thank you guys for your reply's and know you are all in my prayer's You help me so much!.....Susaanlaura

Susanlaura,
I am glad that the PEG is working out well for you. My PEG was my savior and best friend. It is amusing to me that when I tell people that I had a feeding tube, they usually raise their eyebrows sympathetically and say " ooh ". I say, " no, no, the tube was no problem at all. " It was so easy to sit in my easy chair and watch TV or snooze while I was feeding, or to hang it on a nail on the wall at my desk at work. Nowadays I have to expend a lot more effort to decide what and where I can eat.
I won't go so far as to say that I miss having a PEG, but it really was easy. Hang in there, the road is rough, but it does get better.

Danny G.

Susanlaura, I am so glad to know things are looking up for you. Having the PEG is also great insurance against the time when you may -- and I say may -- need some pain meds fast, and that is a great way to get meds in a hurry. I don't mean to be a nag, but make sure you are taking in, by mouth or PEG or both, lots of water. Dehydration is no picnic and is very easily avoided. Drink, drink, drink! And keep us posted, please. Those of us who have reached the other shore, so to speak, worry about those of you who are still making the journey.
Joanna

Susan Laura, I had the PEG inserted in January, as I was sick 3-5 times a day from amnifostine(ethol) I lost 10 lbs. in 5 days. I was taking 3 different anti nausea meds which did not help at all, inluding zofran.Had the tube removed on June 17th and am eating lots of different foods. Taste good tooo as I love food anyway. I lost 50 lbs total, and have been maintaining my weight for the past month. I am eating lots, but can not yet eat many things, that are too dry or hard or rough. Some things still burn. you learn as you go along. Egg salad, scrambled eggs, pastas, alfredos,soft bread, soft sausage, lots of different foods are working. Also keeping up with Ensure Plus too make sure I am getting proper vitamins and nutrition. I do not have saliva, so whatever I eat I have to gulp some liquid for it to go down. But it was ONE HAPPY DAY when that tube was removed!!!!!!!!! Hang in there. This entire process is quite lengthy. Dont rush it. I tried to and now back slided a bit. tried to do too much, too soon, so I am battling fatigue and pain in my throat. Had some tests and scans done. Will see whats what on Tuesday. Hope its nothing major.