Great advise from everyone. I am trying to take care of myself and am seeing my doctor regularly. She is aware of our family situation and now has me on anti-depressents. They do help. Tom J hit the nail on the head - it is Ken's choice to get help for his depression. While I read everything I could get my hands on regarding treatments and side-effects, the change in Ken's personality has been the most surprising. The physical problems and changes was expected - the mental and emotional challenges have been the most difficult to manage. I think Ken was prepared to die - I don't think he was prepared to live.

Seremom, My husband is 54yrs old and was dx with stg III/IV SCC at the base of his tongue in June 2005. It really helps to see that we're not in this alone. He had 1 round of chemo that had him hospitalized for a week. After deciding to stop any more chemo, he completed his 35 RAD txs Oct 7,05. Even with his PEG, he has lost over 80 lbs. We are both midlevel healthcare providers... This entire experience has been a shock to us both!! We have 5 children, all over 20 except for our youngest son who is 13. It's been hard on them as well. I try to keep things as normal as possible and still do the things with our that we both used to do together. Alan just started on an SSRI and I'm hoping that it will help with his depression. I'm also taking the same SSRI,trying to eat right' and exercise to take care of "me". I know that I can't be of any help to him if I'm not ok. Feel free to email me whenever you want to "talk". I know exactly how it is to be the sole wage earner, single parent, and head cheerleader!! God bless you and your family debnoon@bellsouth.net [img]http://[/img]

Dear Seremom.

I also experienced depression after treatment. I am on Zoloft 100mg every day. I am 2-1/2 years out from stage 4 tonsil cancer. I was warned about the depression ahead of time and requested the anti-depressants ahead of time. As Gary mentioned his medical team should be made aware of his condition asap. It takes the anti-drpressants awhile to kick in.
I hope as his healing progresses his mood will also take a turn for the better. Please hang in there and make sure you get plenty of rest yourself. There is a special place in heaven for caregivers. Your role is so important.
Please feel free to vent here anytime. It's a tight band of brothers you belong to now. Many of us are pulling for both him and you.

All my Best, Danny Boy

Seremom:

Something you said really touched me. "I think Ken was prepared to die - I don't think he was prepared to live." I was so well prepared by this site and my physician to have a real battle to fight, that my depression was from guilt.

I thought I got off too easy. I still have a hard time controlling the elation I feel at having a good report, and balancing the needs of others in this forum who are having it rough.

I second guess my treatment plan when recurrences are said to be cancer that wasn't treated appropriately the first time around.

My next check is next Monday, and while I am sure I am fine, I still get the pit in the stomach when I know it is coming. Thank God for prozac! and this forum!

Sincerely,
Lisa

Just a quick update. Ken has finally visited our family doctor and is now taking anti-depressants. It's been about 2 weeks now and they do seem to be helping. It is amazing to me that we have seen so many doctors and specialists over the past 6 months and none have seemed to see the overall big picture of Ken's health - including his mental health. With the knowledge I have gained through this journey, I would definitely make the decision to visit a Cancer Treatment Hospital which seem to look at the patient as a whole person -- not just a tumor at the base of the tongue.

As someone who also didn't go to a CCC for treatment (alhtough had radiation at a CCC extension), I agree that the hardest thing is feeling like any of my doctors are seeing all of me in terms of my health (let alone who I am as a person other than that). This has been compounded by fighting two cancers at once.

The medical oncologists' office has been the best for that, because they are or have been involved in the treatment of both cancers and they are just very thorough (the MO used to work at MSKCC and moved here, I heard, because he wanted to raise his kids here). They really try to find out how I'm doing in terms of pain, nutrition, speaking, swallowing, digestion, level of energy, and mental health every time I have a follow-up with them, although their offical involvement right now is basically doing followup blood tests and checking to see if the Tamoxifen is working OK for me.

I'm not sure, though, if I had gone to Dana Fraber or MSKCC for treatment, if it would be any better at this point since I'd still eventually have to find local people for followups.

Although I like my ENT and trust his clinical judgment a lot, when I went in for the swallowing test, he couldn't even recall the dose of Salagen he had (just) put me on or who my radiation oncologist was--he's just a little absent-minded and overly busy sometimes. I doubt he'd detect if I was depressed unless I burst into tears in front of him or something.

I'm very grateful that my MO became my primary care doctor 16 years ago and has continued on ever since. While he has had to refer me to various other specialists for non-cancer related conditions, he's always good about following up to be sure he gets their reports and recommendations. Case in point: last week one of his nurses called me about a recent bone density test to try to find out how much daily calcium I was getting and whether I needed more supplements. (He also took care of my poison ivy a few years back -- I told him I was sent that day to give him some comic relief!)

It's really important to find a physician (whether at a CCC or not) that can grasp the whole picture and keep a comprehensive record of your post-cancer medical issues.

Cathy

I wish I could make my MO my primary care doctor! I think my MO and his partners in that practice have to push hard sometimes to get patients to go back to their GP for things because everyone in his office is so good and careful (but there's so much demand they couldn't serve all the patients who are actively being treated for cancer if they became a primary care office) .

I have an appointment there Monday, actually, and I'm not sure, after that, how often they'll see me because this is kind of the follow-up to breast radiation appointment.

I like my GP too but I have less faith that he'd catch something that could be a symptom of cancer returning and he's another one of those overly busy and kind of absent-minded doctors (I think both he and my ENT are "absent-minded" simply because they are working under conditions of major information overload but when they forget soemthing that I think they should definitely remember about me it still bothers me).

"Doctors are just people too!" Docs become so important to us in crisis and the loyalty that many get is well deserved. However, I hold a strong belief that WE must be the quarterback of our medical team. Docs don't have time to remain completely informed about the growing tech of health care. Many do their best to read and attend conferences, but there is far too much information for one doc or one team of docs to keep track of. It is my observation that we often expect far too much from docs.

Not all docs have equal knowledge about mental health or meds to assist it. Not all docs can make equal observations of 'the whole person'. Health is too complex to follow an outline or formula where one size fits all. We as patients and care givers have to help them.

Forums like this one, support groups and related literature are rich sources of ideas and hunches. Learn about a new drug, learn about a new approach, or learn of a tried and true regime. Lets don't expect the docs to do all they work - they cannot.

The best docs are VERY open to new ideas, new articles, raw hunches and seemingly 'minor' questions. Quality health care is a "dialogue" between you and your doc, not a monologue that you go and just listen to. Be involved with suggestions, observations, articles, and lots of questions. Get your doc to defend his/her opinion. The good ones can and will. Lets not wait for our docs to take care of us... lets do it ourselves and get them to help us. Tom

Tom, my ENT couldn't agree with you more about being our own quarterback -- In my case, because there was just going to be radiation and most of the folks passing thru the RadOncCtr were getting both chemo and rad, there seemed to be times when I would get an answer like "well, what did your Medical Onc say?" and I would have to remind them that there was none!

My ENT is filling that role in terms of directing the overall strategy, but when it comes to tactics and setbacks, I had to be sure I let the nurses know -- Pester them with questions, write down the answers so you won't forget, and above all don't be embarrassed to pester them several times about the same thing until you have it straight (and they have it straight that a problem exists).

I am finding that the staff have lots of solutions and "tricks up their sleeves", but we have to help them recognize the need.

I recently went thru a bout of anxiety like I have never experienced before, but recognized it and asked for help -- I had taken some of my leftover diazepam (aka valium) which helped, plus more of my compazine (the anti-nausea for the amifostine) but they prescribed lorazepam which did as well without knocking me out so fast, plus it has an anti-nausea component.

Come to find out, BTW, that the lorazepam is what is often prescribed for use until the anti-depressent can kick in for folks being treated for stress in general.

Pete