Mom had her neck dissection on 3/31 and has been through all the prep appts. The docs have decided on Erbitux and radiation. This past Mon. she started the first of 30 rad treatments (5 days/wk) and each Fri. she will have the Erbitux for as many weeks as it takes to go with the rad. They explained it all to her the other day but I know she is nervous and probably a little scared about it - especially the part where you can have sudden BP drop w/Erbitux (that scares her). Dad's going w/her but they asked if I could come too. I was going to ask anyway if they wanted me to come. I think she will get through this just fine if she can just stop losing weight. She is down to 102 now. Please send positive vibes our way as we all hope this will be the last time she has to go through this. Wouldn't it be wonderful if all it took was one round of treatments for everyone and it would never come back!!?? I know... back to reality. Anyway, we're ready. Ya'll take care and thanks for your support.
Nancy T
Wishing her nothing but the best. What a trooper she is. I think she puts Jim to shame.
Do I understand your Signature that this will be the 2nd time she will get 30+ rad Tx's?
Is she getting a PEG?
Your mom is doing great nancy. I had the same as she will and the blood pressure drop wasn't too bad. SHe shames me and has David walking backwards . Tell her good luck and she is in my prayers
At 102 lbs, I hope she has a peg. So sorry she has to go through this again, will send those positive vibes your way!
Man I wish I could walk all the way backwards to age 7 and start all over again. That would give me more time to cherish those 3B's.
nancy
thanks for sharing and I am sending not only ultra positive vibes your Mom's way but also prayers. With the sudden influx of youngsters on this board, it's easy to forget how this cancer skewed old traditionally. I hope I make it to 76, let alone be as strong and vibrant as your Mom sounds,
Echoing David's question: how can she be getting a major second round of radiation? I was told that if they did not have the CyberKnife for my second go round this time they would not have been able to re-radiate me since I already had "maximum" of 72 Grays (7200 rads). Still glad to hear her condition is treatable.
David,
Thanks for the good wishes. Yep, this is the second time around with 30+ radiation treatments. Isn't there a limit on how many you can have? They told her the Erbitux wouldn't make her nauseaous/sick but it did anyway. She just says "when have I ever been the average person" in her happy tone. She came over Sunday evening for a family dinner for my husband's birthday - couldn't eat much but said she was hanging in there. This is week 2 and no one has mentioned her getting a PEG yet. What's involved when you get a PEG? - don't mean to sound stupid but I've never known anyone who had one.
Hey there, Jim. Thanks! She did do great during her treatments last week. No problem w/the BP but she was definitely nervous. I highly doubt she shames you or David and I will definitely pass on the well wishes :o) Take care.
Nancy
Thanks, Margaret - we'll take all the good vibes we can get!!! Keep 'em coming and take care.
Hey, Charm,
Ultra positive vibes are good, but prayers are definitely the BEST! Thanks for both. I hope we all make it to 76 and beyond-healthily. I thought there was some limit on the radiation. She had somewhere b/n 30 and 35 radiation treatments the first time w/no chemo and she said they were aimed at an angle toward her mouth. This go round the recurrence was in her neck and they are aiming it at the right side of her neck and said she would have to have at least 30 treatments. I don't know much about this stuff but it sounds like a lot to me. Maybe since they are radiating a different area they can do it ??? I don't know.
Nancy,
That was a tie in to another post about our Island....Busty Blond Babes = the 3B's
There seem to be two ways to get a PEG.
One is by a Gastro-Doc, using a mild sedation so you don't recall any of it -- He/she puts an endoscope down your throat to the stomach to get the right spot and then cuts in from outside to install the PEG through the abdominal wall and stomach wall -- I've had two that way and apart from some mild discomfort at first, they didn't bother me after a few days. Usually you get a bigger PEG (20 French) that way, easier to maintain and less likely to clog.
Some people have reported more pain afterwards.
The second way is by a radiologist using a fluoroscope and local anesthesia to cut hole and guide tube down inside. Usually used after surgery when damage to throat is enough that they don't want to use an endoscope. Also results in smaller PEG (12-14 French), more like to clog and be a problem. I have had one that way.
Having had one of each, I chose to have the larger PEG third time around, done before the cancer surgery -- That meant that not only did I have the bigger PEG, I also didn't need the Naso-Gastric Tube during and after surgery, so things were a lot more pleasant my first few days after (My first NGT was fastened to my septum with three stitches and didn't work right -- Every time someone bumped it, it hurt, and then they had to replace it; finally putting in the skinny PEG).
Pete,
I really appreciate your taking the time to explain the PEGs and how they put them in. I'm hoping Mom won't have to get one but if it comes down to it, at least it will keep her from losing too much weight (hopefully). Thanks again and take care!
Nancy T
Nancy, a PEG tube is a good thing to have. Just like a port is another item that is very useful while going thru treatments. A PEG tube makes getting nutrition so much easier and also its good for taking medications. Not too many OC patients get thru this without the PEG tube. Those who do usually struggle at some point, please stay alert about this. Im hoping your mother gets thru this as easily as possible.
Christine, thanks for your note. Mom is up to 106 now but her mouth is getting more sensitive/sore w/radiation again so she is eating less again. The nutritionist told her she should drink 5-6 supplements/day since she's not eating much but my mom has a problem getting that much down. I can understand what you're talking about that it might make it easier for her. Didn't think of it that way. Take care and thanks!