Hi Stephany, like others here, I had chemo treatment once a week and during the 2-hour treatment, I didn't feel anything uncomfortable and I could even drive back home myself. But the hardest time came that evening and the following two days. The smell of cooking caused nausea and the appetite was much affected. Radiation did not lead to nausea in my case. Another very frustrating side effect of chemo on me was the emotional aspect. I felt so depressed and restless that my willpower of fighting became very weak. I couldn't do one thing long and the concentration span was very short.This lasted for about two days and I had a few days more normal. Then when I felt better, I had to get another chemo. The whole cycle repeated and I was quite sure it was the effect of chemo and not radiation. I didn't lose any hair even though it was stated as one possible side effect.Another effect was the low WBC and I ended up in the hospital for 3 weeks in the middle of my treatment. The consent form I mentioned earlier listed POSSIBLE short term and chronic side effects of the two treatments. I would not write all here since it was a long list and if you want details, you can email me. Despite going through more side effects, I am glad I have this because I am not sure if I hadn't had chemo, would I have been in remission. My largest neck tumor measured more than 7 cm!

Karen stage 4 tonsil cancer diagnosed in 9/01.

My tumor was a stage 4 in my jaw bone and my surgery produced large, clean margins. I had one lymphnode show cancer, they called it microscopic, and it was the node that was up against the tumor. My oncologist and the tumor board decided against me having chemo. They said that it has not been proven to be a benefit. I realize the jury is still out on that one. There are many on here that did not have chemo. In your mothers position, I believe I would WANT the chemo along with the radiation. It's a shame they didn't give it to her the first go around.
Take care,
Minnie

Hello Minnie, Karen, Gary and Debbie,

Thanks for responding to me again. My mom will have give treatments of chemo and seven weeks of radiation (five days a week. They told her that IMRT was not used for her kind of cancer.) I believe it is the SCC cancer. She has melanoma also on her arm but it did nto spread. Thank God. It was a few years later she had gum cancer and then they said it was in her jaw bone. The doctor, head and neck specialist diagnosed her with this primary gum cancer that spread to her bone. Gary, They did not recommend rad or chemo and a year later almost to the day, she had cancer in her gums again close to where it was before, It had spread. Now, they are telling her to do chemo and rad! It makes me wonder WHY this was NOT suggested a year ago. They also told her even with radiation and chemo, she has a chance it could recur once again.

It just seems to me like the docs dont know too much about this cancer and my mom is acting as a guinnea pig, so to speak as to how to treat in the future. It really bothers me to see her in pain and having lost almost all her bottom teeth. I am scared. Can anyone recommend to me what I CAN DO to help her in this. Should I be preparing certain foods or protein mixures for her? Thanks again and God Bless
Stephany

Hi Stephany,
I have to wonder why also!?!? I have heard some say that their doctors recommended witholding radiation and chemo as a "salvage" option later on if need be. It would be a great question to ask, especially since the recurrence is in the same area.

Not that it will make you feel any better but all of us have a chance that it will recur. That's the nature of SCC.

If they give her Cisplatin chemotherapy, it's usually once every three weeks, she shouldn't need a central line for that.

You're in LA, have you thought about going to the City of Hope for treatment? They are the major comprehensive cancer center in your area.

My mother had melanoma on her arm as well - she survived that, a radical mastectomy and uterine cancer to die of a heart attack - go figure!

Hi Stephany,

I'm so sorry that I haven't been in touch. Everything is going ok with my mom. I finally checked my home e-mail after several months and saw your messages. My mom completed her chemo and radiation the first week of March. She only ended up having 2 chemo sessions that made her pretty sick and she broke out in a rash. They stopped chemo after the second session because they said the radiation was doing what it needed to do.

I hope all goes well with your mom. You and your family have been in my prayers. We still wonder why they didn't do the radiation on my mom after the first sugery either.

Gary by the way my mom and Stephanies mom have the same ENT. He is pretty well known in LA and said to be one of the best,,,,

Take Care,
Danielle

Stephany,

The central line was vital for me, because my veins are so small that I had to be stuck several times. Without the central line my veins started to burn during treatment. They can also draw blood from the central line so those weekly blood counts will be less painful too.

It's your mom's call, but I still recommend the central line if she's to have anymore than 2-3 treatments.

Lynn

Danielle,
both of your mom's have had recurrences!?!? If it were me, I would be seeking a second opinion from a CCC, like City of Hope.

In both cases radiation was not given prophylactically and many would question the wisdom of that decision by the doctors.

My MD was voted "the best" locally and he misdiagnosed my tumor (he didn't even recognize it as a tumor).

Danielle,
I 100% agree with Gary and if I were in your shoes I wouldn't have this ENT anywhere near my mother. I'm sorry if that sounds harsh but I feel your mom might not be going through all of this if she had received radiation the first time around. We will never know that for sure, but I can promise you that this doctor would not get the chance to make me second guess myself again! This cancer is tough enough to beat without taking advantage of all the weapons available to us.
Minnie

I am going to take Gary's advice and seek out City of Hope and gather her records together to present to another doctor. I am very confident with her Oncologist and she has a really good dentist. I talked to Stephanie when my mom had her recurrance (both our mothers had their recurrances around the same time) and asked who her moms doctor was and it was ironic that she had the same doctor as my mom. I agree that she would not have had to go through all this (second surgury, skin graph etc) if they had done the radiation from the beginning. Being that my mom had recurrances of luekeplakia for 10 years her ENT should have known her track record for recurrance. The more I learn the more I want her to get a second opinion.

But on a happier note my mom is doing really good. Shes almost off the pain meds and really starting to be able to eat most soft foods. Thats a relief. Everyday she feels a little better. Shes just really tired but I keep telling that will go away with time....

Danielle

Danielle and everyone,

Thanks for the advice. Danielle, I am so glad that your mom is doing better and eating. That is such a relief to me to hear she is doing well and almost off her pain meds!!!!!!!!!

I do think of you and your mom and cant believe that our moms have the same doc! How ironic! It really is a small world.

I like the City of Hope idea as well but my mother is happy with her ENT. Danielle, he has a friendly demeanor and is nice to my mom and she has confidence in him and I am afraid to rock that boat and suggest another doctor.

Glad she is going to a good Oncologist and dentist. I just hope that our moms will be cancer free and we wont have to see them suffer anymore with this!!!!!!!!!

Gary Minnie Lynn and everyone, thank you for the advice. I just sometimes feel lost as to what to do for my mom and I find your kindness and advice very helpful.

Thanks again
Stephany