#19017 11-21-2005 06:11 AM | Joined: Jun 2005 Posts: 72 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Jun 2005 Posts: 72 | 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.
Carol R - caregiver to hubby Ken. Stage 4, SCC, BOT. 6/05 dx, 9/25/05 last tx, 5/06 stroke. Four years cancer free! Still taking things 1 day at a time.
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#19018 11-21-2005 07:06 AM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | 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.
Gary Allsebrook *********************************** Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2 Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy) ________________________________________________________ "You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#19019 11-21-2005 09:28 AM | Joined: Jul 2003 Posts: 382 Likes: 3 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jul 2003 Posts: 382 Likes: 3 | 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
SCC Stage IV left tonsil neck disection 3/02 radiation finished 6/02 chemo finished 9/02 Stage 2A left breast cancer 3/09, chemo and radiation, finished treatment 2/7/10 -Stage 2 right beast cancer 10/14 chemo and radiation Every day is still a gift :-)
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#19020 11-21-2005 12:00 PM | Joined: Feb 2005 Posts: 663 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Feb 2005 Posts: 663 | 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
Caregiver to ex-husband Harry. Dx 12/10/04 SCC stg 3, BOT with 2 nodes left side. No surg/chemo x4 /rad.x37(rad comp. 03/29/05)Cisplatin/5FU(comp. 05/07/05)-T1N2M0-(cancer free 06/14/05)-(12/10/06) 2 yr. Survivor!!!
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#19021 11-21-2005 12:20 PM | Joined: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2003 Posts: 928 | 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
Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
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#19022 11-21-2005 03:12 PM | Joined: Nov 2002 Posts: 541 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Nov 2002 Posts: 541 | 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
Karen stage 4B (T3N3M0)tonsil cancer diagnosed in 9/2001.Concurrent chemo-radiation treatment ( XRT x 48 /Cisplatin x 4) ended in 12/01. Have been in remission ever since.
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#19023 11-22-2005 09:54 AM | Joined: Oct 2005 Posts: 126 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Oct 2005 Posts: 126 | 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.
CG to wife; Jan 2005 DX SCC Tongue T2N1MO; RND surgery Mar 2005; 35 XRT and 4 cisplatin completed Jul 2005. Dec 2006 tongue surgery, Scar tissue no cancer. Feb 2010 neck node FNA - negative. 2010 ORN right jaw plus fracture 2015 ORN left jaw plus fracture Feb 2016 Lower jaw reconstruction by Fibula free flap+titanium plate - Permanent G-tube June 2016 Difficulty breathing - Permanent Trachea tube Dec 2019 DX Cervical cancer - Stage 1 - Surgery Jan 16 2020. 15-20 esophagus/larynx dilations
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#19024 11-22-2005 05:09 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,676 | 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
CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease
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#19025 11-23-2005 07:13 PM | Joined: Nov 2005 Posts: 306 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Nov 2005 Posts: 306 | 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
SCC BOT, mets to neck, T4. From 3/03: 10wks daily multi-drug chemo, Then daily chemo with twice daily IMRT for 12 weeks - week on, week off. No surgery. New lung primary 12/07. Searching out tx options.
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#19026 11-23-2005 09:41 PM | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Nov 2005 Posts: 1,128 | 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
Age 67 1/2 Ventral Tongue SCC T2N0M0G1 10/05 Anterior Tongue SCC T2N0M0G2 6/08 Base of Tongue SCC T2N0M0G2 12/08 Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06 Neck dissection, trach, PEG & forearm free flap (6/08) Total glossectomy, trach, PEG & thigh free flap (12/08) On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
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