Hello everyone, my name is JoAnne and I am the caregiver for my husband who was diagnosed with stage IV cancer of the tonsil in late January.

He is part of a clinical trial evaluating the less invasive DaVinci robotic technique as an alternative to traditional radical head and neck surgery. Clean margins were achieved during that surgery on 2/3/06. The advantage of this new surgical technique is the ability to access the cancer through the mouth resulting in less blood loss and better visualization/organ sparing. The disadvantage is that the neck dissection is a separate surgery, and a level V dissection was done on 2/20/06. Jack had 7 positive lymph nodes out of the 80 removed but clean margins there as well. He had several CTs that did not show distant metastasis.

He started 7 weeks of daily radiation on 3/27/06 combined with 4 cycles of cisplatin planned every 3 weeks if he tolerates it. He is also getting ethyol injections.

So far he's managed the chemo okay - we are using zofran twice a day, emend for 3 days during chemo weeks with evening hydration through his port during that time. Nausea but no vomiting after the first round of chemo and the radiation pain is kicking in now on week 3. He has just started using percocet and lidocain solution. He finds the ethyol injection painful but no nausea or low blood pressure.

He has a peg tube and is using it - it became active for 4 weeks after his first surgery so we both got used to it. I believe this was the best decision we've made so far as he is comfortable using it now that his mouth/throat are too sore to swallow, and so far he hasn't lost a significant amount of weight. He is able to still swallow liquids and if that goes down I'll do hydration again.

He developed trismus following the neck dissection and he is using the therabite. This is obviously not improved with the radiation and I am nagging him to keep the strecthing exercises going - does anyone have any other suggestions?

I guess miserable but managable is his assessment so far but we have 3 more cycles of cisplatin and 23 radiation treatments to go. We know it will get worse before it gets better and that's daunting.

This is a great site and I appreciate Brian taking the time to talk to me. It's been an overwhelming time for both of us. Jack did not drink or smoke so he doesn't fit the risk profile. Personally, I don't care why or how he got this cancer anymore - we still have to deal with it. We spent our 25th wedding anniversary having surgery and he started radiation treatments on his 55th birthday. I have already found an email buddy here and for the first time since the diagnosis I feel I am with people who have been there and are in the same boat we are.

Most days we're hopeful - and on the other days I read some of your postings. I do not believe that hope and fear are mutually exclusive - seems like we have both and we need to find the balance that works for us. When I really figure that one out I'll post it.

I have been surprised to see that there are many different opinions on treatment options so I am trying to get as much information as possible to make good choices. We are fortunate to have more than one CCC within commuting distance to us, and our MO likes to consult on the best approach. It's obvious that we all second guess ourselves at some point and that's also comforting. I was beginning to think it was me.

Not thrilled to be here but happy there is this resource to know we're not alone in this battle.

Regards JoAnne

Hi JoAnne,I am glad you found this site. I am not a caregiver,but, a survivor that has just started my long road. Everyone here is so helpful and I know will help you and hubby make it down this road.
My thoughts and prayers.

Molly

JoAnne and Jack, It sounds like you all are doing very well so far. Glad to know he is taking advantage of his peg. That will help. One of the things that has helped me "stay balanced" during this is to set a goal or two for the following day when I go to bed at night. [my ongoing goal is John's comfort] it may be as simple as getting some fresh flowers into the house, or mending a few things, or as complicated as tackling an insurance problem.And sometimes those goals just fall by the wayside. But it helps me to have them. Please keep posting- you will get support here. Amy

Hi JoAnne & Jack,

As you will see at the bottom of this post we are almost neighbors. Please feel free to email me if there is anything I can do for you. I am only about 20 minutes away and have a day off every week. Where is Jack being treated? I was at Fox Chase.

Although my treatment was not at all similar to Jack's, I also had no risk factors. That really doesn't seem to matter much anymore.

Please keep us posted as to how Jack is progressing and I really mean it about contacting me.

Jerry

Hi JoAnne and Jack,
I am also a stage 4 tonsil cancer survivor. Treatment plan varies from individuals although we may share the same type of cancer. Our reaction and response to the treatment can also be very different. One thing I can assure you is that the battle is really tough but many of us can go through it and become the winners in the end. If you want to know more about my experience, you are always welcome to email me.

Karen

I am so grateful that all of you responded to my post so quickly. It just makes me feel better to know there are others like us.

Amy I know what you mean about setting goals - at first I started doing that just to give me somewhere to focus my nervous energy but then I realized I needed small victories in order to get the energy to still believe that the big ones were also possible. Some days nothing seems to be going right and I feel incredibly stupid/helpless. I've found I need to feel those emotions - and then get over them as they are a path to nowhere. It's just so many people are uncomfortable when I'm having a bad moment that I've learned to mask my real feelings for people or forums where I feel safe to share. We can't be noble all the time it's too exhausting, but it's too upseting to hear the well meaning advice of people who have no idea what we're going through. I use my caller ID a lot these days.

Jerry, we are indeed neighbors. Jack had surgery at Hospital of the University of PA and is having his radiation/chemotherapy at Princeton Medical Center. I know our MO has been in contact with an MO at Fox Chase so it's good to meet someone who is being treated there.

Karen I am so happy to hear that you are doing well since your treatment ended. Did you also have surgery?

I will be in touch and really appreciate your responses.
Regards JoAnne

Hi JoAnne,
I am another neighbor down the street in Trenton and also work at CA on Orchard raod north of Princeton airport. I too was treated at HUP, outpaitient radiation at Mercer in 1997 and total larygectomy surgery at HUP in 2001. We can't mention Dr.s names on the board, but I am curious about this new DaVinci technique. If you need anything, drop me an email. My best to you and Jack.

Take care,
Eileen

JoAnne,

My father is on almost the same timeline as your husband. He had a left modified radical neck dissection 2/10/06. He began chemo on March 7th and radiation on March 13. His primary is unknown so his radiation is pretty much everywhere it seems. We are in the fourth week and it is getting pretty tough. My father is also taking the Ethyol and doing ok with it so far. Thoughts and prayers are with you and your family!
PS - My father also never smoked etc and was a very healthy person until this. He is 66 yrs old.
Keep us posted as you progress.

Hi JoAnne,

My husband was also diagnosed with advanced tonsil cancer. Today he is only 4 months out of treatment but a recent CT scan and lots of poking and throat gazing by his radiation oncologist indicated that today his cancer is "under control" (doctor's words).No detectable cancer. The doctors (ENT surgeon, RO, MO) do not seem to feel that he needs surgery.

John and I were remembering today how very, very hard it is to be in the middle of treatment and how it seems to take forever to feel like you are improving, even after the treatment is completed.

You and Jack are at an extremely difficult point right now and my heart goes out to you. Please write and ask questions whenever you have them. This site continues to be so very helpful for me but it was particularly wonderful when our household and lives were turned upside down by the treatment. So many symptoms and situations that terrified me turned out to fairly common among people who had had similar treatment. I would never had known that if this site and all the great people who contribute weren't here.

Mary

JoAnne, my DH is also at about the same timeline. 61 years old. Stage 4 SCC. Never smoked and didn't drink. He had radical neck dissection and partial glossectomy with flap done on 2/7/06 and started radiation, 5/week, on 3/13/06 and had his second dose of Cisplatin today, probably his last for the chemo. He has 2-3 more weeks of radiation. His white blood cell count was too low on Monday, so they gave him shots and gave him his chemo today instead. He had 2 days off of radiation as well because of the blood count. He has the XRT radiation because of the node involvement. Several nodes were involved on both sides, but CT and PT showed nothing elsewhere.

He has done well so far, taking no pain meds yet, which I think is odd. No mouth sores yet either, but the mucous is getting bad. He uses the club soda for rinsing and that really helps and we also have a suction machine that our insurance covers. The Biotene products for mouthwash and toothpaste work well too and we have the Biafine cream for radiation burns.

He has used the J-tube since surgery since he has great difficulty swallowing. I will try putting water in it tonight for a continuous slow flow since he had the Cisplatin today. Haven't thought about using the pump for hydration, just for the formula. He has been seeing a speech/swallow therapist for several weeks already. I will remember to give the Zofran twice a day before the nausea erupts, and use the other for breakthrough. We haven't heard of emend.

No ethyol---they were not able to place a pick line with 2 tries, and he said to forget it. They won't give the ethyol without a pick or port because of the possibility of sudden low blood pressure.

Miserable but managable is where we are at also. And some days I must not read this forum, and other days, like today, I am glad to be here for support.

We fight the good fight---together.

Hi JoAnne,
To answer your question, I didn't have surgery because initially my tumors were far too big and dissection would be very damaging. It was hoped that the chemo-radiation could shrink the tumors so that operation could be more easily done. But I was so fortunate that when the treatment was over, surgery was not necessary. As regards the risk profile, I didn't smoke or drink in my entrie life, either. No family history and when I was diagnosed, I was much younger than your husband. I learnt not to ask 'why me' since it didn't help me fight the battle. One thing as a reminder to you, I did suffer from severe depression after completing treatment, after my doctors told me that I was in remisssion!
So it is essential to take care of the mental state of both yourself and your husband.

Karen

Hi JoAnne

My husband started treatment for Stage IV , back of tongue SCC on 3/28, one day after your husband. Althogh he hasn't had any surgery because his tumor is a T4 and is inoperable, I can ralate to SO much of what you have said. I think we're in the same place right now, somewhere between fear and hope{which are absolutely exclusive} To have one and not the other would be emotionally unhealthy . You can grieve while still being hopeful at the same time. Aside from the obvious worries we are grieving a loss of certainty and of the comfort of our old lives. But we need to make peace with this new road that lay before us. I think I am finally coming to accept this and embrace the challenges and changes that lay ahead. Change is hard enough even when its for the good never mind when its not something you would wish on any body. Today we had a good day so I feel like I have a grip but tomorrow...well, lets take it one day at a time. I have also found this forum an unbelievable comfort and a wealth of information.

All My Best JoAnne

In case you missed Gary's post, Kerry and Joanne, find a minute to go to www.curetoday.com and look at the top righthand side of the page for Current issue. In that issue is a good article on "co-survivors" [caregivers]and what we are experiencing. I f ound it very worthwile reading. Amy

Amy,

Thanks for reminding me to look up that weblink. I read a few of the articles and they were very good. I too am a caregiver, my husband's radiation for the tumor on the base of his tongue and lymph nodes started 03/29 and his first chemo was 03/30. The effects of the radiation are just starting to kick in so I know this bumpy road is about to get rougher.

Take care.

Thanks to all of you for your support and encouragement. Amy I saw that article about cosurvivors at the RO yesterday and it's very uplifting. Whether as a patient or caregiver, the battle against cancer is difficult and consuming and I really appreciate how much we can help each other deal with it.

There are also days when it does feel like cancer central in our home and I don't think that's a good thing. I will keep in mind the need to take it one day at a time and remember that this too shall pass.

I'm grateful to know that we all experience similar emotions. I miss the days when life seemed so certain for us but I am also coming to realize how much of an illusion that was. In all honesty I can't see around the bend at this moment but it's less scarey since I've found this forum.

Kerry you are right, change is hard enough when things are going well. Eileen I'll email you the information I have on the DaVinci robot.

Jack and I are trying to find our new normal whatever that may be. Thank you for sharing this journey with us.

Regards JoAnne