Hi my name is Danielle and my mom is in her second week of chemo and radiation. All I have read are horror stories and I'm so frightened for her. She will not get on this website so I just kind of read all the posts and give her any info I can. She is frightened and sometimes she seems so depressed. So far it hasn't been that bad just a few sores in her mouth and she says her saliva is really thick and she has no sense of taste. She has 5 and a half weeks to go and I am just wondering if it is always bad or do some people handle it better than others?

Danielle - mom has recurrant SCC of the gum first surgery in 4/03 second surgery 12/03 now chemo & radiation.

Hi Danielle,
Reading all of the "horror" stories it is easy to lose sight if the fact that it beats the heck out of death which is where I would have been today without it! Oh sure, it was a miserable experience in many ways but I have my life back. Most of us have made a pretty decent recovery from it. And yes, some people do handle it better then others.

Danielle,
When my husband first began his treatment, the ENT office gave us the name of a patient of theirs that was 5 years post treatment. We talked to her a few times and I am still amazed at how easy the whole thing was for her. During radiation, she never stopped working or driving herself to treatment. Her biggest complaint seemed to be that she had to eat soft foods for awhile. There are definitely some people that, for whatever reason, make their way through this with relative ease.

Anita

Danielle,
The stories here have been more depressing lately than usual..maybe just a run of bad luck. However most of us here endured our treatment quite well and, with a few alterations in lifestyle, have resumed working and getting on with life.

I cannot eat like I used to, but I feel well, look good and have gained back the weight that I lost and just came out clean on my CT scan and Xray.
Tell your mom that there is a lot of room for hope.

Best wishes,
Danny G.

Thank you for all the responses. I have such little time and so much to write and soooo many questions. Gary, you are an incredible person. I have read a lot of your postings and you are so helpful and positive and everything that you say seems to come from your heart. You are a wonderful man!
I just talked to my mom this morning. Her oncologist ordered another PET scan last week. She will get the results today and they will compare it to her last scan. Her last one was in October and it came up clean then in November she discovered the lump on her gum and her ENT was going to send her home "cancer free" when she brought it to his attention they did the biopsy and the cancer was back. She had surgery to remove the tumor in December and they graphed from her leg. He didn't do the chemo and radiation the first time in April just removed 2/3 of her tongue and part of her palate (not sure how to spell that) and lymph nodes on one side no cancer in any of her nodes so he staged her as a stage 1 and now we wonder why since it recurred so quickly. We are wondering what stage she is now because it recurred. I think the PET scan is just to compare with the other scan and make sure it hasn't spread if it hasn't spread is it still a stage 1 as the tumor was not more than a cm and only mm deep and had not gone into the bone? She is 56 and has never smoked or been a heavy drinker. She works for a research lab and thinks she got it from something at work back in the days when they were not very careful with all the drums of chemicals etc..
I have so much to tell and so many questions and I have no time to ask. My mom is already getting sores in her mouth (on her good side) she hasn't started taking anything for the pain yet but I tell her she needs to. This is all so overwelming and scary. Thank you all for your encouraging words and input.

Danielle

Hi Danielle,
Thanks for your kind words (I'm blushing)

Your mother will need something for pain in the very near future. There are several different options available from topical swish & spit to long term patches like Duragesic. I used three different types of pain meds. "Long term" (opioids) for consistent pain, "short term" (opioids), fast acting for "breakthough" pain and the topical I mentioned earlier. It kept things pretty much in check. Pain management is a basic patient right. Demand it! There is no need to be pain over this. My oncologist coordinated all of my meds (he also gave me whatever I wanted). I researched and had my meds lined up before I actually needed them. Opioids are notorius for causing constipation as well so that will have to be carefully monitored.

I am also 56 and haven't smoked since 1976 (I did drink a bit though up until 1995). I worked in the electronics industry and many substances that I used to work with, like TCE 1,1,1, are banned now. This is a common age for these types of cancers to appear. Whether they are genetic or environmental is anybodys guess.

About the staging, I would ask the doctor if they have revised it. I would also ask whether this was actually a recurrence or if the cancer was already there (like an occult cancer where they can't locate the primary). You want to ask these questions "off line" if your mother is already in fear of the whole business.

Many of us feel that radiation in addition to surgery improves the outcome. Recent studies in breast cancer survival have demonstrated this to be the case. Whether this is transferrable to head & neck cancer is still being determined.

More about the side effects. Some had had severe swallowing issues, some have had none. Some had had severe burns (2nd & 3rd degree), some have had a minor sunburn effect. I was always able to eat (liquids) and drink (albeit with some discomfort at times) where others relied solely on their PEG tubes. Some have had to be hospitalized from secondary infections and some have just skated through it. Some like myself have lost a lot of weight, some have actually gained weight. Certainly many who post here are concerned with severe side effects but that doesn't mean that we all have them.

Much of our fear comes from the unknown. My wife gave me a book "Living Well With Cancer" by Katin Moore and Libby Schmais that that helped to explain a lot of the details of surviving through treatment and recovery.

Unlike Anita's friend and a few others here, I was driven to my appointments with the LINAC. I took almost a year off from work. It took me up until now (11 month post Tx) to get back to 95%. Your mothers experience can vary widely as you can see.

These are things you can do to mitigate the side effects: Keeping your doctors informed, journaling the experience, keeping records of food and water intake, etc. Keeping the bathroom and kitchen thoroughly disinfected, keeping sick people, especially children, away if they are sick (and if you are the driver and sick people have been in your vehicle, insure that you have disinfected the door handles and things that are commonly touched), managing pain and constipation, insuring 2-3 liters a day of fluid intake, working closely with a nutritionist, insuring that there in NOTHING on the neck prior to radiation sessions (some substances can cause a "bolus" effect where the skin effect is dramatically intensified). Put the radiation ointments on AFTER treatment sessions and NEVER scratch the neck area. Extra attention to the oral cavity, i.e. flossing, WaterPik, Biotene toothpaste, dental hygiene, etc. A humidifier is a good invetment also. A healthy dose of prayer doesn't hurt either. These kinds events in our lives have a way of opening spiritual doors. They certainly teach us that we aren't the ones in control.

Okay, Danielle, here's an upper! I had 37 rad treatments and 5 chemo sessions. I was nauseated once from the meds they gave me to keep me getting sick from the chemo (??) but other than that did just ducky. Yes, I was burned all around my neck and on my jaw, but as Gary says, there is no need to be in pain. I had a PEG, so other than swishing the water/salt/baking soda rinse around my mouth, I didn't try to eat after sense of taste abandoned me. My saliva thickened toward the end and hung on for three weeks. Not fun, but tolerable. I also lost my voice except for a hoarse whisper, but that was only for a week or so after treatment ended, and happens to some people depending upon where the radiation is aimed. I was tired at the end, mostly I think from the pain meds, but otherwise did just fine. Until the burns began to hurt in the last week, the only discomfort I had was the back of my head on the hard treatment table. This was solved by popping a Tylenol about 30 minutes prior to treatment. I cannot second what Gary said strongly enough. It is your mom's right not to hurt, so either you or she should speak up at the first twinge. I hope the fact that so many of us made it through still smiling will give her some strength to do the same. Ask all the questions you want, Danielle. There will always be someone here who has first-hand experience.

Hi Danielle, There is a high probability that a lot of people do better than what is average here on the OCF site. The reason is simple: if you are doing fine you don't need to get help and or advice. I don't want to sound smug either, this is not an easy treatment.

I can tell you I received the maximum dose of Non-IMRT radiation. I drove myself to every treatment except the first. I worked almost every day (with lots of rests) I did NOT have a feeding tube, I did NOT get external burning, I did NOT have mucositis, I was able to eat throughout the treatments (But I still lost 30 pounds). I did have pain later (around week 5 or 6)and that pain was sometimes a "12" out of a possible 1 to 10. For me the pain medication side effects were worse than the pain and so I tried to get by with out them. The thing for you to remember is that she CAN do this and WILL.

Radiation IS the best option with this kind of cancer. It is able to reach the microscopic cancer and it clearly offers the best cure rate.

Hang in there and ask for help when ever you need it.

Danielle, I feel a bit surprised when knowing that what you have heard about cancer are all horror stories. You must have missed many of the survivors' experience shared on this forum. I have been through intensive chemo/radiation treatment and what the previous posters mentioned are true. The pain is something tolerable and it is the doctor's job to reduce a patient's pain to the minimum. I also had my whole neck burned with occasional bleeding. People were scared and thought I was in enormous pain. I wasn't because I had the pain medicine to help me. Two years post treatment, I can assure you that no stranger can ever tell from my appearance that I am a cancer patient. Last week I was 'caught' by a cosmetic saleslady to analyse my skin. She realised a slight difference in colour between my face and neck but didn't notice anything abnormal. She just said I must be too lazy to take care of my neck and recommended a whitening lotion for me.
I also lost my voice for about a month but now I am teaching my students every day. Again my students do not feel anything strange about my voice even though sometimes it sounds hoarse.
I understand how a caregiver feels but please don't be too negative or feel absolutely desperate. Have a trust in the advanced medical technology that can lead your mother to the road of recovery.

Karen stage 4 tonsil cancer diagnosed in 9/01.

Hi,
waiting, and worrying, and wondering is awful. That is one reason why caregivers have such a tough time.

My advice is to take it one day at a time. Ask lots of questions and be prepared to mention problems to the medical team.

I had 1/2 my tongue removed 4 months ago and finished radiation a month ago (I am 41). The radiation was not as bad as I expected - I think the doctors prepared me for the worst. If your mom has had 2/3 of her tongue removed already she has put up with quite a bit; if she can do that she can do the radiation! I found counting down the days or weeks helped - it really is great to know that the chemo or radiation is not forever, and to keep telling yourself just X more days/weeks, etc.

Your mom has a greater helper on her team - you! Both of you should be thankful that you have each other to go through this with. My husband did a great job of coming with me to all the medical appointments; it was so helpful to have his company, have him asking questions, etc. Especially on days when I felt sick or could not speak well due to loss of tongue,etc. Caregivers worry alot but you all do a wonderful job just by being there for us!

I was able to drive myself through 5 1/2 weeks of radiation treatment. The last 2 weeks are tough, as are the first 10 days after treatment ends, but it is great to start feeling better, more energy, easier time eating, swallowing, etc.

I just got thru it figuring I could take it day by day and that seemed to work. I also try to focus on what I have to be thankful for. Things like thank goodness we found the cancer and it is being treating, being thankful for my legs that still work. Going in and out of the hospital daily I felt like at least my legs are strong compared to many that I see. Maybe I can't talk well, but I can see and think, etc. Life may not be great but at least I'm still here, and things could be worse.

I take anti depressants (SSRI)and would recommend investigating that for either patient or caregiver who finds the stress and anxiety to be constant and interferring with daily life. I was not "depressed" but was anxious/stressed and have found the medication to be very helpful in making me more of an oppomist (started SSRI meds before I had cancer)

michelle

ok,
here's an analogy.
Pregnancy and childbirth can be exhausting, tough, painful and full of worry. Yet, most women live through it, and many do it again!

So, we ARE stronger than we give ourselves credit for. We CAN get through it, even though things may get tough. Do we want the cancer? No. Is it fun? No. But we can fight it.

Good Luck oral cancer fighters!
michelle

Danielle, I went through the surgery/radiation/chemo cycle twice. First time was pretty tough since they had to do radiation to my tongue, (remooved about 1/6 of tonge and did neck dissection. The pain was pretty intense for the last week of treatment. I have a pretty high tolerance for pain medications apparently, but not for pain so it took more med than usual to keep the pain down first time. No PEG tubes either time.

Second time was radiaton only to the neck, and really did well with that one. Walked home from the hospital after treatments most days, took mass transit around for transportation. Did the 3 hour trip from where I was staying for treatment to home every friday/monday. Went back to work 2 weeks after finishing.

Not only are each person's experiences different, but sometimes the same person can have 2 different expereinces.

Your mother has a great support person, will need all you help and love during the next though weeks. Be understanding of her feelings and all should be alright.
Bob

Thank you sooo much everybody for your responses. I have printed all the advice for my mom and will give it to her tommorrow as we are going to the horse races to celebrate my sisters birthday. Well we've made it through week two and only a few sores in her mouth and a little sick to her stomach on Thursday after the chemo on Tuesday but the meds for that seemed to help her a bit. Shes only eating soft foods now and she still has a little bit of taste so shes happy about that. She says milkshakes and frozen yogurt taste pretty good. We got the results of the PET scan and its good news! It shows no "Hot Spots" anywhere in her body and when compared to the scan from October appears to be the same with the exception of area where they did the surgery in December but the oncologist says thats just residual because she was not completely healed from the surgery yet. What a relief that was. I hate waiting for results. I think thats when things get really tough for me. The news from the PET scan really cheered mom up and she feels very confident that everything is going to be ok. That makes me feel much better....She's also really happy that she has these two days off and she can have a good weekend.
Gary....Thank you for the wealth of info. I will pass it on to my mom. You are truly a wonderful person for taking so much of you time to help others. Knowing there are people like you out there make this much easier for me. My mom stopped working right before Christmas because of the surgery. She will be off until the 1st of June. From what I've read about the recovery time I hope she will be ready to go back by then.
Mark....I begin to think that may be the case. For example my mom will not get on the website or research anything on the internet and I respect that. It makes me wonder how many others are like her out there. Its my thoughts that after treatment and recovery some people just want to get on with their lives and move forward and put the cancer thing behind them and not look back. My oral hygenist checks my mouth and tongue for cancer everytime I get my teeth cleaned I asked her about her experience with SCC and she told me that she has referred a number of people to specialists and two of them ended up having SCC one has just reached her 5 years cancer free and the other just reached 9 years. That made me feel good I like hearing the good news....
Joanna.....It sounds as if you handled it wonderfully all things considered. I hope my mom can do the same. So far so good. She is a very strong woman she raised me, my brother and sister as a single mom with no support from anybody. Now she has a 13 year old son and I have a 4 month old little girl "Keeley" (her first grandchild) so she has a lot reasons to be strong and pull through this. Our family is very close and she is the glue that holds us together....
Karen.....I did not mean that they are all horror stories I have read some of the most uplifting and powerful stories from people who seem sooo incredible to me that they have conquered this and come out on top. I just meant that knowing that radiation in the head and neck area is the hardest area to have it and it seems like a lot of people have had a really hard time with it. I was just trying to see if anybody could share experiences that aren't as bad as it seems. I worry so about my mom. Sooo much that I feel my life will not be normal until this is over and we get through this and I can breathe again. Being the mother of a four month old I really need my mom to help me I guess I've always relied on her for a lot of things.
Michelle......Isn't it amazing how you learn to talk all over again. My moms doctor took what was the front of her tongue and made it the side therefore it rolled funny for a while but since its a muscle it taught itself how to fold the other way or she taught it. Her speech is very good all things considered its just a little lispy at times. Its been 9 months since that surgery and she only saw the speech therapist once. I can't even begin to imagine how it would be to have that done to my tongue or mouth. Funny how you mention the childbirth thing. I was 4 months pregnant when my mom was first diagnosed with cancer. They were so worried about stressing me out that they almost didn't want to tell me but we made it through everything. I think the hardest part was when she was in the hospital with a traik. I can't imagine that radiation could be worse than those few weeks. She was sooooo uncomfortable..My mom had my little brother with no medication what-so-ever. I personally had an epidural at 5 cm. So needless to say my mom is extremely tough. She is somewhat spirtual and does regularly go to church so there is quite a bit of prayer going on in our family. I have nothing but positive things to say to her and I know we can beat this.

Thank you again everybody for all your support and advice. I will have you all in my prayers....
Danielle

Hi everybody,

Now we are nearing the end of week 3 for my mom. She is still not taking anything for the pain (besides a vicadin once in a while). I personally tell her she is crazy. She says that flushing her mouth every couple hours with the rinse really helps her and she insists upon taking and picking my little brother up from school so she says taking the meds will impair her ability to drive. Shes so tough. The chemo doctor told her no more chemo because the radiation is doing its job on its own so that was a blessing. I just keep telling her that after this week the countdown is really a countdown because its halfway over. They cut down her radiation from what was originally supposed to be 8 weeks to 6 weeks. She sees her ENT on Tuesday. I will let you all know what he has to say. I just wanted to say thank you to everybody who is helping me through this. It really helps to talk to you all or type to you all.

Danielle