Just Starting

seahaven · December 2009

Hi,
I am a 59 year old male. I just finished neck surgery where they removed my tonsil, and metastasized squamus cell carcinoma glands and nodes. Went to the dentist today to get teeth in order then start Rad treatments in about two weeks. From what I understand it will be about the same as everyone, 5 to 8 weeks. The Chemo will be done overnight in the hospital and be three treatments three weeks apart. I understand that I am in for quite the battle. I am now questioning if I am making the correct treatment choice. How does one know?

ratface · December 2009

by stage and protocol and particular hospital
Sounds like you are in good hands. generally I like to think that surgery should be the first line of defense. I like the fact that they have effectively removed the pathway for your disease to spread by removing the nodes. It sounds like you had a neck disection done. was it bilateral or selective or radical. Do you know the pathology and number of nodes removed? Now you need to heal the incision before they radiate? Ask about starting a pre-treatment chemo while you wait for your neck to heal. I had a disection on Monday and could not imagine radiation until that is somewhat healed. Also sounds like the primary has been removed. Find out what they staged you at and what the complete plan of treatment planned is and how they arrived at this decision. What you want to hear is that based on the level of your disease the chemo doc, and Oncodoc and ENT based onypur level of disease had a meeting called a tumor Board review and decided this is your best course of action. If you here yes to that then sit back and relax because you're going to be fine.

soccerfreaks · December 2009

Welcome
I would add only the following to the excellent advice provided by others:

1. You should 'know' because you trust those who are treating you. If you do not trust them (and I would certainly hope that you do AFTER the surgery), then you should seek new doctors. Trust in your professional team is pivotal to your well-being, both physically and mentally, the latter in particular as time goes by and, as you indicate yourself, other decisions need to be made.

2. The battle you feel is coming ain't necessarily coming. The ways in which folks react to radiation and chemotherapy vary from person to person. I can say that I have undergone two different rounds of chemotherapy (different cancers) and was warned in both instances that I would be devastated. It happened that the cisplatin (first go-round ... the head/neck cancer) DID mess with me pretty strongly while the second round, with carboplatin and taxol, which others were REALLY adament would sicken me a great deal, I went through with nary a whimper.

It is a personal thing. And they are getting better at what they do with chemotherapy AND radiation therapy every day. They really are.

If you have delved back through the posts on this board, you will already know that hydration will be key for you. You will know that post-rad skin treatment will be fundamental for you, even if RadMan does not suggest it himself (burn prevention).

The fact that you went to the dentist to get teeth in order, as you put it, indicates, if a doc advised you to do so, that you are in good hands, as suggested by others.

Welcome to the club, a crummy club to be a member of, to be sure, but one filled with fantastic, caring, kind, and gentle people, as must be evidenced by the expert advice you have previously received.

Best wishes with your treatments.

Take care,

Joe

Kent Cass · December 2009

good outlook
Sounds like your surgery removed a lot of it, and that is great. I didn't have, because they couldn't find my Primary. The chemo and rad- most of us have experienced both. Nobody likes, of course, but it's better now than in the past. You'll be okay- those of us who are on this forum are proof of it.

A word of advice: get everything ready with the meds. Assume the worst. That is not to say you will be taken to the edge of tolerance- it is to say that you should be prepared for what is to come. I was not, and went thru a very bad time at the end of the first week, during that weekend, which would not have been nearly as bad if I had been prepared. Talk to the Onco about what to expect, and what help is available. My Onco told me they would have me on Morphine the very first time I met with her, but I had not gotten prescrips for either that or the Magic Mouthwash until Tuesday morning- and my condition had gone south on the previous Friday evening. You, and nobody, has to experience what I did. Down the road, during weeks #5 and #6, the times were even worse, but the meds were there to help me take it all in stride. Read my profile for my treatment. I do not expect you will be where I was, but you have just gone thru surgery- so be prepared. Again-WE ARE PROOF that you're gonna get thru this, and be okay. AND, YES, the results of head and neck w/chemo and rad are great. GO FOR IT.

kcass

Scambuster · December 2009

7 Weeks
Hi Seahaven,

My docs also told me 5 to 8 weeks but I see very commonly it's 7 weeks that appears time and time again as the standard time which equates to 35 hits of radiation conventional (once a day five days a week) or 70 hits with IMRT (Twice a day 5 days a week).

As the guys have said above, everyone reacts differently. I had a pretty rough time and was hospitalized from about week 4 till I finished. Had the PEG in about week 3. There are good and bad things about being admitted and I had some hospital (& Dr) induced complications like a free dose of Pneumonia, a PICC line that went wrong and a lot of burnt out veins as I was quite often on IV pain meds (Morphine) and also hydration fluids.

If you are an outpatient, then you will need adequate support getting to and from treatments during the rough patches. As mentioned above, having a good relationship with your doctor is important and making sure they actually communicate as mine didn't on occasion and I eventually pulled them up and asked them to please talk to each other. Don't be afraid to ask or demand what you want if things aren't going right re their co-ordination.

I also found making contact with a couple of guys going through the same time for similar treatments has been good and we keep in touch (a bit like making new friends here !) Information is helpful as you will have questions and the Doctors don't always have the answers. This forum is great for getting information from people going through ahead of you and getting explanations about why and what you may be concerned about.

To answer your main question I have given some mainly darker points of the treatment but I am almost 9 weeks out and can assure you you will get through and make a recovery and be over the majority of the 'darker patches'. you will have to deal with some changes as we all do from the side effects but they are bearable and I am here playing with my two little kids and living a mostly normal life although I am still recovering. Each week gets better so just remember that, it does get better !

Wishing you a hassle free period of treatment and speedy recovery.

Regds
Scambuster

Hondo · December 2009

seahaven

For me I pray about it first and then look at all the information before me, then see if it is worth a second opinion. From there I pray again and ask God to lead me to make the right decisions. I am glad to have you here with us just wish it was under better circumstances for you. You will find that this is a great place to learn from others who have been there and made it to the other side of treatment, you are right about being in for a battle but here at CSN you will not go alone.

seahaven · December 2009

Hondo said:
seahaven

For me I pray about it first and then look at all the information before me, then see if it is worth a second opinion. From there I pray again and ask God to lead me to make the right decisions. I am glad to have you here with us just wish it was under better circumstances for you. You will find that this is a great place to learn from others who have been there and made it to the other side of treatment, you are right about being in for a battle but here at CSN you will not go alone.

thanks
I also pray every day. Actually several times a day. I am now sure I have made the correct decisions and am moving forward.
Thank all of you for your help and I am praying for all of us.

fishingirl · December 2009

seahaven said:
thanks
I also pray every day. Actually several times a day. I am now sure I have made the correct decisions and am moving forward.
Thank all of you for your help and I am praying for all of us.

Welcome
Welcome Seahaven!
I haven't been here on this for very long, as my healing, fortunatley went quickly, and I didn't seem to have many problems. I was just given the clear of cancer, so you can get through it too. Always, my advice is listen to your Drs. nutritionist ect. If they say hydrate, then hydrate, for example. As they know what they are talking about:) It sounds so simple, but I have heard and known of people who did not do exactly what they were told to do, and things didn't go as smooth.

I too will pray for you. I truly believe in the power of prayer:)

Cindy

lyolan1 · December 2009

just starting
Hi Seahaven,
I have just completed treatment for the same diagnosis. I am 48 yrs old with tonsil cancer and 2 nodes, and neck dissection. My oddessey started last February with a bad sore throat on a family skiing trip. Weeks later I noticed a lump on my neck on the left side. I thought it was swollen glands, but no lump on my right. I decided to wait and see and then waited for my scheduled physical in May, I felt fine. After many tests, I definitely had scc tonsil and nodes. Surgery in July, treatment September12-October29.
Looking back, I think that the most important thing is to believe that you will win. Next, ask questions and be your own advocate, actively and forcefully, there is more than 1 approach to treatment. You must maintain your health and nutrition. As treatment goes on, this will become difficult, so in my opinion, and I'm glad I did it, get the tube before treatment starts, you will need it. As JKINOBAY said to me, hydration, hydration, hydration. I was a tough guy and did not listen too well. I was severely dehydrated once, and very dehydrated another time. If you are unable to use the bolus feed, lobby hard for the pump, it helped me turn the corner for recovery because I was able to get nutrition and hydration consistently. Trust me, you do not want to get dehydrated. Eat as much as possible, even though the food you loved tastes so terrible.
Now the positive, if you read the posts, you will realize that you can come out of this in good shape. I am 6 weeks out of treatment today. I had the tube out yesterday. I have been off the tube for 3 weeks because I was able to eat solid food and maintain/add weight. Everyone is different, my head medical oncologist maintains that I did well because I chose to go with the Erbitux for chemo. Long term side effects are less than cisplatin (kidney). I am not a doc, this was my choice. Who really knows? Someone on these boards said that I was in the fight of my life, but I would win. It was encouraging because I feel great today. I have saliva in my right side and taste is also comming back nicely, and no tube! Maybe it was the erbitux and IMRT radiation procedures, who knows? Kick Butt. I will close with a quote from a cancer survivor, biblical, "All shall be well, and all shall be well, and all manner of things shall be well." Peace and Good Luck. Alex.

Landranger25 · December 2009

lyolan1 said:
just starting
Hi Seahaven,
I have just completed treatment for the same diagnosis. I am 48 yrs old with tonsil cancer and 2 nodes, and neck dissection. My oddessey started last February with a bad sore throat on a family skiing trip. Weeks later I noticed a lump on my neck on the left side. I thought it was swollen glands, but no lump on my right. I decided to wait and see and then waited for my scheduled physical in May, I felt fine. After many tests, I definitely had scc tonsil and nodes. Surgery in July, treatment September12-October29.
Looking back, I think that the most important thing is to believe that you will win. Next, ask questions and be your own advocate, actively and forcefully, there is more than 1 approach to treatment. You must maintain your health and nutrition. As treatment goes on, this will become difficult, so in my opinion, and I'm glad I did it, get the tube before treatment starts, you will need it. As JKINOBAY said to me, hydration, hydration, hydration. I was a tough guy and did not listen too well. I was severely dehydrated once, and very dehydrated another time. If you are unable to use the bolus feed, lobby hard for the pump, it helped me turn the corner for recovery because I was able to get nutrition and hydration consistently. Trust me, you do not want to get dehydrated. Eat as much as possible, even though the food you loved tastes so terrible.
Now the positive, if you read the posts, you will realize that you can come out of this in good shape. I am 6 weeks out of treatment today. I had the tube out yesterday. I have been off the tube for 3 weeks because I was able to eat solid food and maintain/add weight. Everyone is different, my head medical oncologist maintains that I did well because I chose to go with the Erbitux for chemo. Long term side effects are less than cisplatin (kidney). I am not a doc, this was my choice. Who really knows? Someone on these boards said that I was in the fight of my life, but I would win. It was encouraging because I feel great today. I have saliva in my right side and taste is also comming back nicely, and no tube! Maybe it was the erbitux and IMRT radiation procedures, who knows? Kick Butt. I will close with a quote from a cancer survivor, biblical, "All shall be well, and all shall be well, and all manner of things shall be well." Peace and Good Luck. Alex.

Good Luck
Like everyone here, this was a bolt out of the blue for me and my family. Overwhelming at first, starts as an emotional roller coaster and then goes to both physical and emotional at the same time. My ENT that made the initial diagnosis of cancer (base of tongue) immeadiatly sent us to an ENT cancer surgeon for further evaluation. We put my care in his hands and he has guided us through this. He is part of a team in the Henry Ford Health Care System and add'l Doctors he involved have been top shelf as well. We were offered both radical surgery and radiation/chemo but were told by the surgeon that whether we did both or just the rad/chemo, the outcome would be the same. We passed on the radical surgery and completed the rad and chemo. (33 rads and 3 weeks of chemo)I am 2 months post treatment, feeling pretty well albeit about 25 pounds lighter. (I've gotton 10 of the 35 I lost back so far) Had PEG and port put in prior to starting treatment, PEG a real life saver. Had that out maybe 4 weeks ago. First PET scan next Wednesday. Looking for good news. I guess this is kinda like flying. When you get on the plane everything is in the hands of the pilot and crew. I put my faith in the Docs and they didn't let me down. Ask questions, do what they say and hang tough. This is something you've got to take head on. Others have fought and won. I'm fighting and will win and you can do it too. Good luck.

Mike

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