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Joined: Jun 2007
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mhupe Offline OP
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I finally feel like we are in the home stretch with my husband. He's down to one more chemo treatment and 10 more RTs. And, as many of you would expect, he's pretty darn miserable.

He's been surviving the treatments, only lost 10 pounds so far without a peg. He HATES but takes his liquid supplements and he is able to eat eggs every morning and he does really well with his fluids...even though everything is a struggle.

And, he is on a ton of pain medication. Which makes him pretty tired.

While there are times when he is "up" and doing well emotionally, there are times when he is really down. This awful treatment process has brought him to tears many times.

Right now, I don't think he sees a life past this...and, he just is in a state of constantly feeling miserable. He wishes he could eat normal food, create normal saliva and swallow without discomfort. He wishes he was out on his bike riding in the summer or out camping with his kids.

The reality of his situation right now is if he is not in treatment at the hosptial, he is in bed.

Emotionally, he dipped last week when he had thrush. Now, that's better but he still has his down moments...they occur most if I leave him...which I do every now and then to get into the office for a couple of hours or to take the kids someplace.

I even started adding an hour walk into my night to try to regain some sense of normalcy in my life and to help me stay on a better, more even keel. (I was finding that I was walking around everywhere crying...the grocery store, the drug store...taking out the garbage...anytime I wasn't with him I was crying.)

Now, I'm doing better and I see the light at the end of the tunnel. But, he is struggling emotionally and the light isn't so clear to him.

Last week when he was at his lowest, I talked to his team about antidepressants. I was a little bummed out to find that they take 2-4 weeks to get into someone's system. And, my husband does NOT want to be on anti depressents.

If I only had to worry about the next 10 treatments, I wouldn't think twice about dropping the topic. But, in reading through posts here, some of the recovery period sounds hard emotionally, mentally and physically.

For those of you who have endured the treatments and the recovery, what are your thoughts regarding anti depressents at this stage in the process? Should I push harder in this area or should I wait it out.

It's a tough call from my perspective...because if it takes 2-4 weeks for the medication to work...he might be doing better in 2-4 weeks..or, emotionally/mentally he might not....

Any thoughts or guidance would be GREATLY appreciated!! I can't get him to go on this site, but I read things to him all the time. And, we are both grateful to all of you!


Margaret
----------
C/G: Husband, 48 (at time of dx)
Dx 5/18/07 SCC, BOT, lymph node involvement. T1N2BM0. (Stage 4a, G2/3)
Tx 6/18 - 8/3/07, IMRT x 33 Cisplatin x3 (stopped after 1st dose due to hearing issues). Weekly Erbitux started 6/27/07 completed 8/6/07.
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Margaret - I can so relate to what you are going thru! But there is some good to hang on to in that your husband is still eating the eggs and taking liquid supplements. Tiredness and depression is very common during the treatment stage. There are lots of ups and downs for both the survivor and the caregiver. The tears I saw rolling down my son's cheeks, just broke my heart. But the "up" moments come, too and things do get better. My son slept so much, often I had to wake him to take medication or push some liquids and many times I would go in to his bedroom to see if he was still breathing. (he was) About the anti-depressants - maybe if you talk to the doctor about his reluctance, and if they feel he really needs them, they may be able to give him some new perspective on why it might be a good idea. If your husband is concerned about becoming addicted, there are ways to slowly decrease the anti-depressants when the time is right. It's a lot easier to deal with anything if depression isn't in the mix. I can understand his wanting to get back to riding his bike. One of my son's happiest moments was when he was able to get back on his motorcycle. Margaret - it's good that you are getting out now and then even if it's just to take a walk. During the worst of times for us, I did a lot of crying, too, in the car - at home - late at night. What helped both of us a lot was the guidance we got from OCF. No matter what time you get here, seems like there is always somebody listening. So, keep looking towards the "up" moments and just taking a day (or even 5 minutes) at a time. There really is a light at the end of this dark tunnel so keep looking towards it and let us know what is happening.


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



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Margaret, it is so painful for me to read your post as I so remember those dark days and the feeling of helpleness. I too cried all the time. I remember hearing a jazz song and wondering if my husband would ever hold me in his arms and dance like we used to. I also called his MO when he went in for chemo and asked his nurses to talk to him about depression and they did and he said he was not depressed and did not want to take anything. I was surprised. They told him and me his reaction was normal and this to would pass. I did encourage him to keep taking his pain meds. It seems everything we would ask was normal and you just have to get to the other side. I can say it does get better, sometimes its hard to see the forest for the trees. Hang in there and keep yourself healthy, I walk every nite with a wonderful friend and we both have cried many a time. Sometimes I even needed a glass of wine in the evening for myself! Your husband has a lot going for him as he only lost 10 lbs, no peg tube and can still swallow and eat, even if it is eggs. I know he doesn't want to hear this but one day or 1 hour at a time. My husband still tells me I dont have a clue!!! LJ


CG to husband 53,39 rads. 3 rds cisplastin ended 6/2/07 Tonsils removed 1.10.07 11 of 20 nodes positive- lump removed on rt. side of neck 1/26/07 cancer of nasal pharnyx TXN2MX 2nd rd. of chemo- carbo/taxol on 6/11/07
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Margaret,

If he has 10 more rads to go, then please count on at least 4 more weeks of misery, probably worst than he feels now. Then he will start a slow recovery but he will know when he walks out of that tunnel and that will provide a psychological boost to his mental state.

It is perfectly normal for him to feel doom and gloom now and it won't get better until he finally realizes he's walked out.

I didn't get the mood drugs and I'm not saying he shouldn't as that's a individual thing but he and you will come through this in one piece and your worlds will return to normal but just don't expect too much too soon.

Also my wife confessed to me, long after I was recovering, that she too cried a lot when I was not in sight or hearing distance. I'm glad she didn't tell me sooner or that would have made me feel worse.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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Margaret,

David is correct about the next 4, possibly five weeks. I too had my ups and downs. I found ativan to help relieve some of the anxiety. Best of luck, this too will pass.

Rob


6-05, Left Tonsil-T1N2bM0 stageIVA, chemo(Cisplatin), radiation(6660cGy), neck disection, no PEG. HPV negative. (Doc suspects posit)
3-9-09 last of 30 HBO treatments.
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Margaret,

please listen to these guys. I was quite lucky re side effects during radiation. Right now (I week after end of Tx), I wished I felt as I did 2 weeks earlier.
I would suggest that it is normal for a patient to feel frustrated and sad etc during the Tx (would anything else be normal???). That does not mean that antidepressants are bad and if they help, great. On the other hand they are not candy either and the medical profession is in my opinion quite nonchalant in prescribing them. (OK I am off my soap box now).


M


Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
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I would put my money on 6 weeks before you even notice the slightest change and even then it will be measured in 3 week increments for a long time. Fatigue and depression are commonly known side effects as many others have mentioned. The narcotics probably don't help much in that area but he will probably need to increase his dose rates - even after treatment is over. the radiation side effects keep on going for quite a while post Tx. I took anti-anxiety meds and had a script for Paxil although I never took them - had enough drugs. The treatment really kicks your ass though and anti-depressants may help him now.


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)
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mhupe Offline OP
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Thanks all for the responses!! It means a lot to me to hear from people who have been there/done that.

Here's what I do understand...cumulatively, the radiation and chemo continues to do there thing post treatment for a couple of weeks. And, that just sucks because when you think you should start to feel better you are actually feeling worse.

But, isn't there some benefit to not hauling your weary body to and from the hospital every day? It takes us anywhere from 3-4 hours to get to/fr the hospital and get treatment on a non-chemo day. So, I was kind of hoping the pile on of icky symptoms post treament would be offset by taking away the stress of going to the hospital daily. And, I was hoping that mentally/emotionally that would give him a boost.

Am I completley off base?

Markus, sorry to hear you are feeling worse now than before...If I am remembering a previous post of yours correctly, didn't you golf 27 holes right after treatment? For the record, I put you in my book as super human after I read that. I hope you are able to golf again soon!

Anne Marie and LadyJoe...thanks for the support, you two are very encouraging and helpful to me I always enjoy reading your posts. LJ, I hope things continue to improve and I was happy to hear your hubby will be able to start work again soon!

Gary, Robroaster, David...It's really helpful to get that patient perspective. I'm watching my husband go through this and yet I don't think I have a fraction of a clue as to how much discomfort he is in.

Thank you everyone!


Margaret
----------
C/G: Husband, 48 (at time of dx)
Dx 5/18/07 SCC, BOT, lymph node involvement. T1N2BM0. (Stage 4a, G2/3)
Tx 6/18 - 8/3/07, IMRT x 33 Cisplatin x3 (stopped after 1st dose due to hearing issues). Weekly Erbitux started 6/27/07 completed 8/6/07.
Joined: Apr 2007
Posts: 794
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As usual I can go to any topic and find answers to the same symptoms my mom and I are facing.
I find this home amazing to be a part of!
Thanks everyone!!
Donna


Donna
CG to Mom, dx 4/25/07 with tongue cancer,T3N0,tx began 7/6/07, 31 tx's of IMRT, 8 cycles of Erbitux. Brachytherapy, surgery, left neck dissection and temp trach placed all on 9/17/07, trach removed 10/17/07. ORN of jaw, late effect of radiation symptoms. **lost my beautiful mother on 5/5/11.
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Margaret,
not having to drive to get radiation was nice, but at the same time it did provide a structure around which the day had to unfold.
You are correct the simple fact that because the Tx is over you want to feel better. There is no doubt about that. That works for a very short time and then the reality sets in and therein is the danger. I think that this is why so many people are cautioning you ... be prepared to feel worse before it gets better.

Re Golf... no that was not me, instead I went to work (physically not very demanding). For the last week, I have been interacting with my students via email, but I will try to go in at part time (if possible) next week and take it from there. Is there anything your husband could (and would want to) do as far as hobbies or work etc are concerned (plan a vacation or remodeling, organize the labtop, mp3 library, etc).

It helps to be prepared for the worst, that way any surprise will be a positive one. Also, every day is one day closer to the day when you cross the finish line, even if there are additional hurdles to overcome.

Best wishes to both of you.

M


Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
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