Hi everyone,
My mom just started treatment yesterday.
She is going to have 34 IMRT treatments.
I don't know if any of you remember my other postings. She is 70yrs old with SCC on right lateral tongue. Had surgery 10wks ago with clean margins (1/2 of tongue removed with skin graft) and no lymph node involvement. Stage 2
She had SCC back in 1986 and 1988 with surgery and then in 2003 had surgery again because of dysplasia.
It took a long time before treatment because they had to set up her IMRT treatments. They had to send everything up to the main CCC. She is getting treatment at one of the CCC locations.
From what I understand they are treating both sides but a higher dose on the right side were the cancer was.


We are just taking it one day at a time. I have learned so much information on this site.
Any idea on when she might start having side effects? I know everyone is different.
From what I have been reading about 2-3 weeks.
I have encouraged her to drink a boost everyday and lots of fluids. She does not have a peg tube.
They never mentioned one. We are just going to take things one day at a time.
Thanks for listening and I will keep posting.
Michelle

Michelle, We'll keep our fingers crossed for your Mom. 2 to 3 weeks before the rad. tx. start to kick in sounds about right. You are doing the best thing by encouraging her to eat and drink as much as she can. Amy

Michelle --

Uou should meet with teh CCC's nutritionist (you and your mother, that is) and get some advice and instructions on daily caloric and fluid intake. Keep a log and make sure she is taking in enough. If she hets too debilitated they may have to stop treatment which can reduce efficacy.

Ask bluntly about whether they think she should have a PEG -- many CCC's virtually insist on these, others tend to see how things go. Usually if a certain percent of pre-treatment weight is lost, then the patient is encouraged to have the stomach tube. Ceraunly with an older person the risk of debilitation is greater. However it is also important to try and continue to swallow as much as possible throughout.

Also, meet with the radiation oncology nurses and get alerted to what "red flags" you need to watch for -- signs of thrush, mucositis, etc. -- and what can be done to ameliorate these problems.

Your RO nurse and your nutritionist are the most important CCC people with whom to interact, as well as the RO doctor -- do not be afraid to call on them and to ask the hard questions. Usually the RO will meet with you at least once a week -- at Hopkins we also saw RO nurse almost daily and the nutritionist once a week and more often if needed.

Gail

Michelle, From patient to patient it varies.... I am sure the Medical Oncologist (MO) or the Radiation Oncologist (RO), have already advised you about getting a PEG Tube installed, either prior to beginning treatment or shortly after beginning. Personally, I consulted with a Gastro doc prior to beginning treatment and became his patient, so when I needed it I could get it within 24hrs of recognizing the need.... Nutrition is so very important during treatment, don't allow that to suffer.... My nutritionist recommended 2,500 calories a day... Get creative with a blender...
Darrell

Thank you all so much for your replies. Very much appreciated. My mom is on her 3rd day of treatment. So far she is in good spirits. She said she is tolerating wearing the mask. It does not bother her. She is pretty tuff for a 70 yr old. I am so amazed at the strength that my mother shows. She never complains about anything.
She is doing her flouride treatments nightly.

I will be going with her on monday for treatment and to talk to the RO. I have many questions for him.
Nobody has mentioned a peg tube or anything. So I will be asking alot of questions.
I first want to find out what dosage of radiation they are giving her. She is getting IMRT treatments.
I remember when we first went to meet with the RO he said that they were only doing radiation because she has had SCC before. If this would have been the first time she got it he would even question doing radiation.
He said they are not treating an active tumor at this point. They are treating her to hopefully prevent it from coming back and any microscopic cancer cells.
If she has to have a peg down the road then we will deal with it then.
I don't see the benefit of putting one in now.
That would cause her to worry and the risks involved of putting one in.
I plan on asking about meeting with a nutritionist regarding her calorie intake etc.

Thanks again, I will keep posting,
Michelle

Michelle,
My father is just a week or so ahead of your mom. The first week went well but now that he's completed 14 treatments lots has changed. He's trying to keep his food intake up but not managing well. They weigh him every 3 days and he's lost 6 lb.s in 2 weeks. It's very hard to get him to eat so I believe the PEG is coming soon. He's got ointment for his face and a mouth rinse for pain. I think we'll be asking for other pain medication as well because of his mouth sores. Also his energy level is about 50% and his spirits are low. By the way he's 76 years old. This is so hard to watch but I keep holding on to knowing that June 15th (his last day of radiation) we can begin the journey of putting this behind him and healing. Good luck to you and your mom.
Tracy

Hi everyone,
Just wanted to update everyone on our visit to the RO today.

Tracy, thanks for the information. Sorry to hear
about your dad. I know radiation can be really hard on you when you are older.
Is your dad having IMRT or conventional radiation?
My mom just had her 5th day today. So far she seems to be doing ok. I know things can change quickly. We are just trying to take things one day at a time. It's very hard to do sometimes.
I wish you and your dad all the best.

UPDATE

I always look inside my mom's mouth when I see her and today I noticed that on the right side she had a white coating on her tongue. I wasn't sure if this is caused by the radiaiton or was she developing thrush in her mouth. She doesn't have any pain from it.
We were scheduled to meet with her RO today but he was off sick, so they said. We met with one of the other RO which I did not care for. I felt he was somewhat rude and could hardly understand what he was saying by his accent.
Anyhow he gave her a script for a swish and swallow. It's a combination of
benadry/nystatin/and an antibiotic.
I asked him if she was developing thrush or was this caused from the radiation. She's had only 4 treatments. Would she start to get an infection so soon??? Anybody else experience this???
He basically said it was a combination of that and the fact that her mouth is dry. From her surgery. He never really gave us a clear answer.
He told her to rinse her mouth every hour with salt/baking soda and water mixture.
Then I went on to find out that my mom has been having pain on the opposite side of her cancer(left side of tongue) in her ear. She has kept this from me for 2 weeks. The pain is on the left side.
She said the pain started about 2 wks ago and went to her medical Dr. and he just cleaned the wax out of her ear. She said the pain did not go away and was waiting to talk to the RO today about it. She said she feels like she has an ear ache and a little bit of pain on her tongue on that same side as the ear. This pain started before she even began radiation, so it couldn't be caused from that.
Does anybody have any ideas why she would be having ear pain on the opposite side???? The white coating on her tongue is just on the right side of her tongue were she had surgery with the skin graft.
We asked this RO about the pain and he told her to go to her ENT dr. (so not much help from him).
So we made an appointment with the ENT dr. for this Thursday. The RO did not even look in her ear. He felt around her neck. I had to ask him if he felt any enlarged lymph nodes. He said no.
I don't know if this thrush could be the cause or what. Or if something else is going on.
They did a CT right before her surgery and everything looked clear. I just hope it's not any cancer going on. Or could it be nerve related from her surgery. It's been about 12 weeks since her surgery. It worries me.
Any information from anyone would be greatly appreciated.
Michelle

I forgot to also mention the question the RO asked my mom today.
DO YOU SMOKE OR DRINK???
This question makes me so mad. I get so tired of these doctors asking this question over and over. A history and physical should be documented in her chart. My mother has never smoked a day in her life.
He should have reviewed her chart before asking a question like this.
I was about ready to tell this guy off----But I did not want to upset my mother. I will make sure she does not have to see him again.
Sorry I just needed to vent.
Michelle

Hi Michelle, just wanted to share that John has had of and on again pain in his ears since surgery. The surgeon thinks it is the nerves rejuvinating. He also has headaches[which he never had before cancer]. The suggeston for the cause of those is 1]. jaw trying to mend. 2] neck tight after neck dissection and rad tx. Their bodies go through so much during this treatment it is hard to pinpoint these kinds of pains. Hope you both can hang in there. Amy

Michelle --

You might tell your RO that 50% of the current HNC patients at Johns Hopkins have never smoked (per two JH surgeons at a recent HNC conference I attended) and Dr. Gillison (the oncologist studying, among other things, relationship of lifestyle to occurrence of oral cancer) spoke at same conference and said the changing demographic of the HNC patient is "younger and non-smoker." Many of these cancers have turned out, upon pathology analysis, to be caused by human papilloma virus.

Gail