The technicians can tell if his mask is too loose when aligning him up before radiation and setting up the beams. The RO will start to be concerned if to much weight is lost, 5lbs, when being weighed each week, and may suggest another simulation, new mask if further weight is lost, but it's a good question to ask. It also depends on how much weight is lost in the face. I lost 40lbs during one radiation treatment, and used the same mask, so everyone is different.

As far as the tumor not needing radiation anymore due to the tonsil being clinically responsive, it does. There entire tumor may not be killed off, microscopic cancer can be there, and tumor does regenerate, after each radiation, so he needs to complete the entire treatment to kill the cancer completely.

I stayed at American Cancer Society's Hope Lodge if that's the one you are referring to. It's an amazing place, full service, upscale, and better than some hotels costing $350 at night, minimum here, I was at their flagship lodge in NYC, although I live here, it would take me up to 2 hrs each way to commute, sometimes longer, just for 14 mies lol, so my RO set me up at Hope Lodge, so I could do my treatments at the hospital. I met a lot of people, some around the world.

I never take notes during the meeting, it takes away from the conversation flow. If anything, I would write questions to ask beforehand, and when I leave the office jot down key parts of our conversation. I usually get or already have copies of all my scans, surgical reports, pathologies, blood work, and later on the doctor's office reports, so that is helpful to understand what thier talking about, clarify anything. I would never record the conversation either, even if the doctor said yes. You may just get guarded answers then. I go alone to my doctors, but an extra set of ears may help, who can take notes, but they shouldn't get too involved (mouthy lol), and mix up the conversation, that's my opinion, but do whatever works for both of you.

All the best.

What type of chemo? I assume Cisplatin? I was a tad sick after #1 but for me #2 was much much much worse. Number 3, forget about it....Nothing helped my nausea and pleanty of things related to this Tx can help make the nausea worse like pain meds and constipation so do try and stay on top of his nausea, it's a game changer. Remember that we all can react differently to everything so even if something worked or didn't for others doesn't mean it will or will not work for him.

Thanks again for helping and most if all for listening it really helps getting trough something you've never heard of:
My husband is taking cisplatin: he started 5/20 and started Rads: on 5/19
This morning he didn't fill to good he had some vomiting nothing major and he's felt nausa up until the after noon and ate some latter he had a big shake!! Would the chemo still be working after 8days? He felt sick the day he took cisplatin: also what could he be using before going in for Rads? Like a cream to delay the burning sensation .. He seems so down I'm just so use to seeing him smile and laugh and seeing him working in his garage this C news has really came hard spring and summer is his favorite times of the year (mine too
He an out doors man to the fullest!! But the boys and I won't let him get too board but I will see that my baby gets rest I just don't want him getting too much I just want to try and keep things normal:
My husband ask the nurse assisting today in rads about a spray for the mouth after he finished everyday doing the radiation she said they didn't have anything like that so we will just continue toating our baking soda,salt,water around I would really prefer a saline wash of some kind.. Also about the note pad I keep to jot down things that's just something I do before and after we visit with the ENT or the RO or just a reminder of how the day is going appointments etc... For the recorder yes if we're going in for important news I have been using my phone just to record a few minutes of info: I don't ask them to speak into the mic! But I just keep it in my lap or purse while my husband me and the DR chat it really does help to go back and say ok I know what that means now or that's how you pronounce that word .. Just things like that and it works for me so that's what I'll do !! It's been a long day over an hour and forty five minutes one way and the lodge is located in Ky.ive heard good things about it only thing is children aren't allowed so we will make the drive lords will !!
Thanks again very blessed I found this site starting too learn how to use it!!

He very lucky to have you but take care of yourself. There are current and former caregivers on this site so talk to them about you.

Remember ANY advice we give you here should be discussed with your docs as we are not doctors but patients and what works for one may not work for another.

Re the cream for radiation, your docs will advise AGAINST putting anything on before rads but many here have used Aquaphor after each rad session. It helped me but I didn't start to get "red" outside until the last week of rads.

Ask about what most call Magic Mouthwash. The ingrediants change from pharmacy to pharmacy but some find it helps sooth the throat making swallowing easier.

You're doing great so keep on posting.

Thanks David!! I'm very happy to hear that cause some here don't have a care giver But still make it even tho it's a little harder doing it alone
Today is day 8 on the rads gezzz!! We still got a ways to go: thanks again also David on the cream i did some research and found a cream that looks to be very promising on helping with the burn that comes along with rads: it's called Silvadene some May have heard of this but for me it was the first time finding the cream after searching many places online we may try this or the Aquaphor cream if needed


He felt good this morning not sick he ate a half order of biscuit & gravy he's also still doing good on the water intake but soon as we get to Rads he says I fill a little sick so leads me to think it's nerves I found that giving him Prilosec seems to help more with nausa than the nausa meds given at the first chemo Tx hope everyone is doing good summer is here and we have waited patiently for it but looks as tho we're going to be stuck inside where a little longer (very sad face ): but The Lord will continue to see us trough this I pray we will miss the flea markets and garage sales we really enjoy this every year we get into the primitive and antiques ...

As far as me taking care of my self it is hard at times as we have two boys in school but I'm doing good thank god : again and again thanks for the replys here this is a wonderful site as it gives info sometimes a Dr just seems to busy to give or wants to give I might add):

I think we all had to get through the "doctors are busy and give only short answers (or no answers) to my questions" issue during treatment.

Every time my doctor gave me an inadequate answer I told him I needed more detail in his answer. He would then take longer and explain it better. Eventually he gave me the "good" answer to every question.

He also added that most patients don't want to know what's going on with their treatment or their disease. Many of them are in denial and psychologically overwhelmed by it all; they just want to come in, get zapped and leave. Since that is the norm doctors give short answers or minimize their answer. BUT, once they realize you ARE serious about wanting to know they will open up and give you the detail you seek. My doc said he did this because patients who want to know make better patients and have better outcomes.

So, fight for yourself and your husband. It's all part of being a good patient advocate.

Tony

Thanks tony I will make sure I'm more than will to be told things that we really want and need to know this is a persons life I fill some Doctors have more patients than they can handle meaning they have too sit and read their chart to know what's going on it's really not fair to the patient I did ask about the nodes when we we're told they was 12mm ,16mm ? Is this big or small nodes I thought small cause they say the tumor was hiding the two nodes on the right side of the neck where the Tumor is at....

This was on a screen cause when he pulled the tumor up to show us I ask where is the nodes and that's when. He said they can be seen cause of the tumor ? How did they see them in the first place we was told a t3 then a 4a but I thought a 4 would be considering he couldn't open the mouth but he opens his mouth good eats and drinks water great I thought also surgery would have happened first but the said radiation and chemo


The chemo made him sick for 8 days what will they do when I tell them he can't take it will they lower the dose? So many Questions so little answers from the docs (when we get to see them thanks again everyone.....

Tomorrow starts a new week Larry hasn't felt good today I sure miss him working in his garage!! Where he would handle his antique tools keep all his knifes sharpened .. I use to get so mad cause he stayed in the garage all his free time I call his garage cause it's where all his toys are at his tools ; now I just wish he felt like going out their I would be happy he took two cans of his formula today by mouth and are some biscuit & gravey he's been drinking water really good I guess we will see what this new week brings I pray it's good and the rads won't be to hard on him ..
We get to talk with the RO tomorrow I'm going to ask if it's an option after the treatments are done would it be a benefit if he get surgery to remove the tonsil if needed I also want to ask when he will get another CT to see how the tumor looks in his neck and how the nodes have responded to the radiation I'm sure how often this is done our kids will be out if school on the. 6th I hope their dad is up to doing some activities with them I know he needs rest but he seems a little depressed and I can understand that it's just so hard to go from healthy to being sick : keep my husband in you're prayers say a little prayer for me to ..

You must be patient, unfortuately you both have a long way to go before things get better.

My personal opinion is to avoid unncessary so don't push your doctors into something they don't see a need for. If surgery is needed I'm sure they will advise you so.

I guess David I just have so many of the What If ) going on it's nice to just forget about for a little bit and relax we are learning to take it one day at a time sometimes one hour at a time when we are at that moment to hurry up and wait ) that' would be reassuring to know that if the surgery is needed and will help that it can be done but you have to get the questions out fast!! Their is just so many pactients that need care and I'm sure they all have questions .. The nurses are very kind and full of answeres.. I'm glad he felt good today the Radiation therapist give him good advise today and I think that helped boost him up to stay motivated to doing things as he did before he was diagnosed and that's what I keep telling him stay as normal as can be trough this it's better on the Health the mind , body and out come when treatments are finished!! Thanks David for the reply hope all is well .. Have a great week! (Learning patients )