My husband of 27 years (51 year old non-smoker, never used tobacco in any way) has been battling Stage IV, base of tongue squamous cell carecinoma since June 2005. He has undergone surgery to remove 32 lymph nodes (5 of which were malignant) then 40 treatments of Radiation therapy plus 1 round of chemo. His tumor grew so fast (more than doubled within 3 weeks of diagnosis) that instead of a PEG tube he ended up with a J-tube (into his small intestine instead of his stomach). His last radiation treatment was 9/21/05. Ken has been struggling with complications ever since he was diagnosed. We have managed day by day for the past 6 months and now I believe we are facing the worse challenge -- severe depression. Ken will not eat (everything tastes 'burned' or causes extreme nausea). He is hooked up to a feeding pump 22 out of 24 hours a day. We talk openly about his depression - but nothing seems to move him to accept help. His past experience with anti-depressants caused him to have tremendous suicidal thoughts - so he does not want to go that route. I am simply weary. I am stuck between whether I am a wife ... or soon to be a widow. Thanks for listening.

Seremom,
It is quite common and predictable that he is suffering depression - it is a typical post treatment side effect. Many times they have to shop around for the right combination and/or strengths of drugs to manage it. Convince him, if you can to give the psychiatrist another shot at it. His medical team should be informed as well. I am kind of surprised that they didn't do a pre-emptive strike since depression is so common in cancer patients.

The first 6 months post Tx is a very difficult time, but you can get through to the other side.

Seremom,
Many of us here that have gone through treatment didn't make it without anti-depresents. Talk to your doctors and take care of yourself too! The first 6 months are tough but there can be a very full life after cancer treatment! There are a lot of survivors routing for you both! - Kris

Sometimes I think that the depression is worse than the disease itself. My husband is also very depressed and has been for a long time. He took the antidepressants only as long as I was watching but as soon as I turned my head they disappeared. After a while I quit asking. He has been lucky because he has not suffered from the treatments nearly as badly as others, yet everytime I point this out I guess he just can't see it.

The worst thing is if you are both depressed and I have learned one of the hardest lessons of my life being a caregiver to a cancer patient.... I can only take care of my emotional and mental well being. I know this does not sound very comforting but what I can tell you is that his depression is easier to deal with when I don't make it my own.

Sounds like good advice and I can tell you that if you were to go back to earlier this year and read some of my posts you would see that the depression was shared in this house.

I have found ways to redirect my life events so that they are mangeable and so that I don't let them drag me down so far. Sometimes it means not listening to him when he talks about suicide and not wanting to live, sometimes it means walking away, sometimes it means reminding him that life is precious. I have yet to find a magic formula that works but I have to keep myself up so we are not both down.

I don't know if any of this makes sense. I hope that you hang in there, talk to your close friends or a therapist and find ways to keep yourself healthy emotionally. Sometimes just that is enough to rub off on him.

I wish there was an easy answer but there really isn't. Just know that you are not alone. Harry is almost 6 months from treatment and on Dec. 10 he will make a year from diagnosis. People tell me that things will improve with time and it is that piece of hope I hold onto everyday.

Good luck to you both!

Sincerely,
Cindy

Seremom,
the first thing to jump out at me from your post was .."he is hooked up to a pump 22 to 24 hrs a day". Shoot that would depress me too!
Pete was fed during the night time hours with a port in his chest. Does he have a port? Much easier for all.
Pete managed without anti-depressants but , I did not! I used Zoloft for around 9 months and thank God for them.
As you can see by the replies you have received, depression is a common side effect for patients and caregivers. I know you are physically and mentally whipped right now and can promise a light at the end of that tunnel . If I were you I would be having discussions with his Doc`s concerning methods of feeding and different types of meds for the depression.
Take Care
Marica

Whenever it comes to the topic of depression, I seldom hesitate to chime in as I went through severe depression for almost 6 months that nearly killed me. I agree with others that depression is sometimes more scary than the cancer itself but it is curable.Seremon, of course, as a caregiver, you are already burnt out seeing your husband suffering so much and it seems there is little you can do. No matter how hard it is, you can't let yourself fall into deprssion because you are the only one who can stand by your husband right now. There are a lot of success experiences shared on this forum and your ventilation here can certainly help a lot. It is important that your husband seeks medical counselling and takes anti-depressants regularly. The medicince takes at least 2 to 3 weeks to have effect on a patient's body. I have taken anti-depressants for one and a half years and even though I am considered 'cured' from my depression now, I still need to consult my psychiatrist once every 3 months. Be patient!

Karen

Seremom,

I have been a caretaker to my family member (SCC tongue, surgery, radiation and chemo) since January 2005 and ongoing. It has been the hardest thing I had to do in my life. It takes incrediable strength and patience.

I also find myself tired and burnout but I persevere because they need our help and support.

I have struggled with anxieties and depression plus dealing with the patient depresssion. Finally I consulted my doctor and got a prescription for an anti-depressent because I realized that if I would let depression rule my life I would be of no use to my loved one.

Hnag in there and good luck to you and your husband.

Hi, Seremom. Well there are now 4 of us Arkansas gals contributing to the forum [that I know of]. Maybe we should try to get together in person. Do you have any support or relief offered by other family members or friends? Do you have time to do things just for yourself? The position this illness has put you in is so tough. I'll be 65 in Jan. John was diagnosed in April and treatments ended in July. I don't have the strenght, stamina or desire to do half of what I could 6 mos. ago. I dread the upcoming holidays [Thanksgiving and Christmas have always been my favorite time of year]Now I don't want to cook great food or drag out decorations or try to entertain. I have just enough energy to be sure John's meds are filled, that he is eating enough and that the bills are paid on time. Ken is having a much worse time than John, so it is no wonder that you are exhausted and depressed. My heart goes out to you. Keep venting here. It is a safe place to let your hair down. Amy

Seremom - Depression is about mood, but it is also about other things - sleep disturbance, appetite changes, loss of concentration, lack of focus, and more. Sometimes, when my clinical clients won't let me treat their depression directly (with anti-depressant drugs), they will follow behavioral prescriptions.

The 'big three' in depression are: diet, rest and exercise. Being depressed generally means being sedantary which suppresses thirst and decreases appetite. Being gravely ill does the same things. When you are depressed you need to eat 4 times per day, drink twice as much water as usual and get regular exercise. A short daily walk will do to begin with. Make between meal snacks a rarity, drink smoothies instead.

Get your doc to prescribe whatever potions are necessary to sleep effectively every night. Mood can't improve when you are exhausted. Sleepy time tea at bedtime, or otc sleep aids, or Ambien, or warm milk, or all of the above. Sleep, though elusive, is imperative.

I remember sitting and thinking about how sick I was, and how rotten I felt - over and over and over. Not really self-pity, just resignation that all the rest of my life would be just like this - empty, alone, meaningless, hurt. The chemo nurses called it "Chemo brain". Its terrible. Mine began to lift when my family stopped treating me like I was going to die.

Diet, rest, exercise. Don't tell him thats what you are doing, and getting him to do, just do it. Badger him into going to the grocery with you. Then park out in the parking lot a ways. Get him to take a Benedryl or Ambien at bedtime - for you. Mix his meds into his food so he has to finish something to get all the drugs. Be creative. Ignore his moping behavior. Open the curtains, put flowers on the table. Eat meals that are good for YOU.

Not everyone wins this battle. Don't let yourself be a secondary casualty. His body will be feeling better now - little bits at a time. Step forward. He'll join you, or he won't. Do whats good for you. That will be good for him too. Trust me on this one. Be strong, Tom J

Tom is giving you excellent advice, both in taking care of Ken and taking care of yourself.

I watched my former father in law going thru much the same problems when my former mother in law had Alzheimers -- The entire family encouraged him to get involved with caregiver support groups and the main benefit there was that he found he was not alone -- He had others going thru the same problems to talk to.

In re: Ken and the anti-depressants, there are many different types and they have different effects (and they take a while to build up in the body to the point where they are effective) -- Since he seems to have had a very negative affect, he should be watched carefully by his physician or therapist at first (which also has the side benefit of getting him out of the house more often.

Please consider getting friends or family or even hired help to keep Ken company while you take some time off to meet with friends or go to movies or swimming pool or whatever -- You need a break to let off some steam.

Pete

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

There's no question that you ultimately have to "be your own quarterback" ( I must say that ofent I find metaphors used here noticably more appropriate for men than for women--such as "band of brothers" and here's another--just had to point it out this time!)

I think it's also important, though, in that process, to try to find docs that are also interested in putting together all the important pieces, not just the one they are immediately treating. The nasty thing about depression, of course, is that it makes you less inclined to try to be proactive about getting what you need, because everything feels hopeless. So it's important there's a doctor checking for that.

I agree with Nelie that it can be difficult to struggle to maintain the big picture of what is going on in treatment, especially when you take into account the fear, anxiety,nausea and severe lack of energy that comes into play.

As John's primary caregiver I take on that role but with my own on-going heavy concern and a full time job it's also hard for me and I'm not the one who's ill.

The first week of treatment John had trouble with his PEG and had a fever so we had to go to emergency in the middle of the night. The cancer hospital he goes to is a university teaching and research hospital but they don't have an emergency so we had to go to a sister hospital. The first question from the triage nurse was: who's your doctor at PMH ( the cancer hospital)? I paused because at that point there were 3 doctors involved - the ENT/oncology surgeon, the medical oncologist and the radiation oncologist.

I gave the name of the radiation oncologist basically because he is the one we like the most. He's quite young and very warm, is open and encourages all questions. He does seem to have the best overview but when it came to asking his advice on possible participation in a follow-up trial he had to say he just didn't know because it wasn't his area.

I think it's easier to pull together an overview and introduce possibly new info that you've read about etc once you're well into the process. At the beginning, at least, we found it next to impossible.

Mary

I hate those "who's your doctor" questions. I have the wonderful benefit at my workplace at having access to banked sick leave days after my own sick leave ran out. Everyone donates two sick leave days a year to the teachers union if they have them at the end of the year and then people with really long term medical conditions can still get paid by being awarded some of the sick leave. As a result of this, and working part time, I haven't had to apply for disability even though it's been 11 months since I was able to work full time.

But anyway. Each semester in order to apply for banked sick leave hours I have been asked to get a form filled out by "my doctor". Which doctor? (for me it's even more complicated because I have my ENT for the oral cancer and a breast surgeon for the breast cancer). Last Spring I had all four doctors fill out a copy of the form (rad oncologist, ENT, MO, breast surgeon) and this fall I just asked my ENT since the real issue with why I couldn't teach full time at the beginning was serious mouth pain which caused problmes talking(lately it has been exhaustion from breast raidation but apparently what he said was enough for the whole semester).

Basically, right now my ENT and the MO are the ones who are staying really involved so theya re who I'd list if someone asked for some other reason.

Ok I give up what's an MO? "Mother of all oncologists"?

Medical oncologist (mine also happens to be an internist, so the primary care thing works out well).

Cathy

It seems like everyone is different and the "be your own quarterback" advice is the best. I have definitely been an agressive caregiver for Ken - staying on top of everything. We do not live in a large metro area and the Oncologists here in NW Arkansas are swamped. While Ken's medical oncologist is super, it is obvious his plate is more than full. We have a terrific relationship with our family doctor (a GP) and we felt very comfortable talking with her about the overall situation. It also helped to have someone to ask "what should I ask the other doctors"? I wish I had found this website much sooner after Ken's diagnosis.

Yeah, good oncologists are really swamped when you aren't in a major metropolitan area. That's true of my MO (and his partners in that practice) as well. Nonetheless, I was glad to hear that he wants to keep seeing me every two months for a while. What that means is every month I see either the ENT or someone at the MO's office (every other time it's the nurse-practitioner, not the MO, but she is just as good) so I'm being checked for syptoms that could indicate recurrence once a month (though he doesn't look in my mouth quite as thoroughly as the ENT). I hope that can continue until I reach the two year from diagnosis mark.

Hi Seremom,

I'm 58 and I also had tounge SCC with two lymph nodes. The depression is natural, but very tough to deal with. I began to work out two weeks after my neck disection and used no drugs. Even though I was weak and it was frustrating, it helped my spirits trmendously. I could see the light then. I knew trhat if I could lift two pounds today, I could lift three tomorrow or the next day. Try to get him some exercise, even a short walk to begin. If people know what you have gone through and they see you trying to get well, they offer lots of encouragement. It helped my spirits.

Steve