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#137063 07-21-2011 01:24 PM
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klo Offline OP
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My Alex is nearly 12 months out from treatment and is now at the point where he feels he is not moving forward. I think he is depressed - he complains of foggy thinking, can't see the future, and sleeps to make the day pass. Except for 1 month part time nearly 6 months ago, he has not worked since March 2010 as he cannot concentrate and suffers terribly from fatigue and pain in his tongue after a full day of doing anything. He is also still PEG dependent. Alex is many things but he has never shirked paid work (around the house a different story ...). He is definitely scared to go back, believing he would not cope.

So here are my questions. For those of you who have taken anti-depressants, which one did you take? How long did it take to kick in? How long were you on it for? What side effects did you experience? And what and how many did you try before you got one that suited you?

Thanks for your help


Karen
Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes
Dx March 2010 51yrs. Unresectable. HPV+ve
Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31
Chemoradiation (IMRTx35 + weekly cisplatin)
Finish Aug 27
Return to work 2 years on
3 years out Aug 27 2013 NED smile
Still underweight
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Hi, klo
Before we get to the depression part .... the foggy thinking may have to do with the cisplatin; as I understand it there are ways of compensating for it. Does your hospital/cancer center offer any seminars on this?

Is your dear Alex seeing a neurologist/pain specialist for the pain management. One of my riding buddies specializes in this, and her arsenal includes conventional drugs, acupunture, and even lavendar pillows!

Re: the fatigue - has he had the thyroid test yet?

Ok, now the depression. My husband (the survivor) managed without anti-depressants, but I (the caregiver) only just got off the St. John's Wort I was taking to manage life in general. Of course, Alex should discuss with a doctor whatever he takes, but in general anti-depressants will flatten your emotions, and reduce your libido. My little happy herb takes a couple of weeks to kick in; it can be dangerous - issues with diabetes - and anyone thinking of it should clear it with a doctor (I did).

One of the hardest things with anti-depressants is that people are resistant to them when they should not be - "it's bad to use a crutch." Well, its not bad to use a crutch if you need one, but the term is now a negative one. Maybe think of it as an ankle wrap - helps to support you while you heal.

Best wishes to you and Alex!


CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
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Karen,

There are some questions to be answered before I would say getting him on an antidepressant. There are several things that may be causing his symptoms and adding another drug into the mix may not.be the solution , I know it wasn't for me.

If Alex is on an opiate pain medication, he will show those symptoms. If you read the side effects of those drugs and understand how they work it could explain what he's experiencing.

Opiates depress the central nervous system, slowing the cardiovascular system, which causes the fatigue feeling, they also stimulate the brain causing insomnia and irregular sleep patterns which also cause fatigue and that foggy effect. One of the side effects is depression or depressed like symptoms.

Thyroid, adrenals and testosterone levels should be checked as both radiation damage and post tramatic stress can throw these off causing similar symptoms. Opiates also constrain testosterone levels in the body.

Finally if those are not the issue talk to a therapist as opposed to just getting Alex on an antidepressant. Contrary to popular belief these aren't miracle drugs and are most effective when used in conjunction with counseling. Cancer is heavy and there is no shame in reaching out for help, I have and I swear by it.

What I find helpful is talking with someone as well as communicating with others that can relate to where I've been and the issues I continue to deal with post treatment.

Hope that helps, keep your chin up

Eric.



Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
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Im sorry to read about Alex's problems. Cancer is a terrible disease that never seems to go away. We all fear having a recurrence. Going thru cancer treatments can be so traumatic. Just turning into another person who has limitations can be a hard pill to swallow! I know I have some days where I am deeply troubled by my new life and I miss my old self terribly. I have found that helping others thru their struggles makes me feel worthwhile and needed. Everyone needs a reason to get up in the morning. This may sound crazy but how about a pet? I love my cats and they are great therapy.

Im not one who took anti depressants but know that it can be a challenge to get one that works properly. Most will take several weeks to build up before a person can notice a difference. Many times the dosage needs to be tweaked to get it right. Often one medicine wont work but a different one will. So it can take a few months before the patient gets the right medicine at the right dosage. I would suggest that a therapist would help him too. Sometimes being able to talk things out with a stranger is what makes a big difference.

Hope things turn around for Alex soon.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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Hi,
Just having been diagnosed as "subclinical hypothyroid" I want to tell you some of those symptoms could have been mine, except I was cold all the time as well. Being a thinner person I have been cold before but it was getting ridiculuous when the temp climbed to 90.
Extreme lethargy was how I would describe my mood, and I either wanted to sleep or just sit. I had to make myself get up and do things. Foggy thinking, yes, that would have been me too.

Anyway if his has not been tested it is worth a shot. It was my free T4 that was so low, so much controversy about the TSH measurement, but my TSH was noticeably higher than it had been prior to TX. I get retested in two weeks, but I can tell you I certainly feel different than what I did.
Anne

Last edited by AnneO; 07-21-2011 06:19 PM.

SCC tongue 9/2010, excised w/clear margins:8 X 4 mm, 1 mm deep
Neck Met, 10/2010, 1 cm lymph node; 12/21/'10: Neck Diss 30 nodes, 29 clear, micro ECE node, part tongue gloss, no residual scc
IMRT & 6 cisplatin 1/20/11-2/28/11 at MDA
GIST tumor sarcoma, removed 9/2011, no chemo needed
Clear on both counts as of Fall, 2021
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Karen, all of the above thoughts are good ones. Certainly low thyroid function could be a contributing factor. And Anne, I relate to your low temperature woes. I live in Los Angeles, and was wearing sweaters in the summer following my RT. I'm still chilly 2 years out!

Therapy and anti-depressants are a good combination. But if he's not ready for the former please don't rule out the latter. I suffered through major depression many years ago, long before my cancer, and Prozac just about saved my life. Now of course there are better drugs, things like Celexa, Cymbalta, Lexipro... a bunch of others, maybe even better than those.

I wouldn't hesitate to ask about getting on one of these. They do take time to kick in, maybe a couple of weeks. But once you get Alex's thyroid tested (if not the other things that Eric mentions) you might think about it.

Please keep us posted.


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
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klo Offline OP
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Hi Everyone,

I have been away and unable to respond so was extremely gratified to get online this morning and find such practical questions and solutions.

Alex is on no regular pain medication and left the opiates behind 6 months ago except for the occasional one when a round of golf (with a buggy) gives him a hard time. The only regular drugs he is on are a proton pump inhibitor for gastric reflux (Somac) and an anti-nauseant (Maxalon). We think the mucositis has extended all the way through his gastro-intestinal tract thanks to his chemo drugs and there is some issue with his gastric emptying cycle. I am sure this will return to manageable without drugs one day, it is just taking its own sweet time.

Maria, thanks for your point about cisplatin - I too think this has caused his foggy thinking and am looking for ways to "detangle" his synapses. Anti-depressants can do this.

Anne, Eric, and David, thanks for the reminder re thyroid. Had a blue with the radiation oncologist over this in February. He told me that thyroid levels would be done 9-12 months out and I wanted them done 6 months on. Here we are 12 months out and TSH is not done so have undertaken it myself with the primary care physician. As we didn't have baseline levels done, it is hard to know what Alex's normal is, but thyroxine is on the list to try when we get results back (due in the next couple of weeks).

Eric, yes, testosterone is low, and Alex is on baby doses of anabolic steroid injections once a fortnight. Unfortunately, the brand we were using went out of production worldwide for a few months and we had to switch brands (with different dosing) which did not agree with Alex so much. The first brand is back and we are going with it next fortnight as it definitely improved his mood and appetite, whereas the 2nd brand caused irritability and pimples.

Therapy is not an option - in Alex's mind all things ending with ology are lumped in the same category as astrology. I even struggled to get him to accept speech pathology as a rational, science based practice. Margaret the speech pathologist is his best friend now as she is the only one that listens to him and treats him like an intelligent human being unlike both ROs. Two days after a modified barium swallow that showed Alex had real swallowing issues, ROs, who have been struck out of the will, made Alex feel like a failure by suggesting that there was no functional reason for him to be not eating AND made fun of the fact he had another barium swallow at my insistance 3 months after radiation which REALLY made my blood boil.

Christine, yes a pet has saved Alex's life in my opinion and maybe there should be a thread dedicated to this. He has a Siamese (called a seal point Burmese nowadays). Besides being great company for him when he was so sick and unable to leave the house, it was a responsibility that gave him something to do when she needed feeding or letting out. This cat is like a dog and cracks the neighbours up as she walks with him to the rubbish bins up the driveway and back again every day. Unfortunately, she developed a taste for the pump feeds and if we had a leak in the middle of the night, we would have to clean it up immediately before she did it for us. She got quite fat, and I am not sure it would have been very good for her. Their relationship has changed quite markedly over the last 12 months as Alex has become very attached to her.

Thanks for the names David - I was trying to short cut the trial and error part of taking anti-depressants and was sort of hoping that someone would come back with "oh yes, I took xxx and my thinking processes improved" but in hindsight that was a little over optimistic and unrealistic. Anti-depressants are way out of my league although I know there are different mechanisms of action and they target different chemical reactions in the brain. My ignorance means that I cannot work out rationally which type would be most likely to work on cognitive function.

Can't remember who mentioned St Johns Wort - yes I considered this but it interacts with so many things that I thought we had better work with the drugs that are on the doctors prescription software so that computer will say NO if we pick one that interacts with any of his other drugs (Somac, Maxalon, or steroids).

Thanks again everyone, if anyone wants to suggest any more names I am still all ears.

Karen


Karen
Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes
Dx March 2010 51yrs. Unresectable. HPV+ve
Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31
Chemoradiation (IMRTx35 + weekly cisplatin)
Finish Aug 27
Return to work 2 years on
3 years out Aug 27 2013 NED smile
Still underweight
Joined: May 2010
Posts: 638
klo Offline OP
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PS to everyone, you all just ooze compassion and empathy as well as practical advice. Thank you so much


Karen
Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes
Dx March 2010 51yrs. Unresectable. HPV+ve
Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31
Chemoradiation (IMRTx35 + weekly cisplatin)
Finish Aug 27
Return to work 2 years on
3 years out Aug 27 2013 NED smile
Still underweight
Joined: Aug 2007
Posts: 1,301
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Hi Karen,
Welcome back and it is great to see you got wonderful advice to your question.
As you know I was on amitriptyline (Elavil, Endep) for a short time and it was not for depression but neuropathic pain. I was glad when the �trial� was over and I could ween myself off Endep.
�The functioning of antidepressants is different in neuropathic pain from that observed in depression.. Antidepressants will relieve neuropathic pain in non-depressed persons.�
Can elaborate when we talk but for others who may be interested I suffered night-time hallucinations while taking it�..Spiders!!!
Sorry to see that Alex is still having so many issues and I hope it can get sorted soon.
Cheers
Gabriele


History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.

1/31/16 passed away peacefully surrounded by family

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Karen,

I'm going to write a short novel here, please bare with me.


In my opinion you've answered the question that is the key to Alex's issues. Low Testosterone and my thoughts would suggest elevated Estrogen (estradiol) in his system as well. I would like to convey how "important" testosterone is to the male system. It effects EVERYTHING in the male system. I'm going to give an excerpt from some "light" reading I've done on the matter:

"Common symptoms also include depression, mental fogginess/fuzziness, difficulty concentrating, anxiety, loss of muscle, increased weight gain, decreased facial hair and a general feeling of not caring about anything. When you are low on testosterone, you often just don't care about anything - you just "exist". Pleasure and desire can be greatly decreased greatly affecting your career and your relationships."

Sound familiar?

"Normal" range of testosterone in the male body is between 260-800 ng/dL however understand that 260 is a VERY low reading and even this low will affect how any man functions. My readings my first test was 70 ng/dL...I was a mess. My idiot GP put me on 3x the normal dosage of androderm to get me back to "normal" and that caused massive issues. Ever read an Incredible Hulk comic or seen the movies? That's when I understood and fully grasped how delicate and important those levels were for me or any man really.

When you start testosterone "replacement" therapy, your body will stop producing the hormone naturally so it's EXTREMELY important to be consistent with Low T therapy and have a dosage that keeps Alex at a consistent 500 ng/dL level in his body. This will keep his moods stable. We've all heard the expression for women when they get their moodswings as "hormonal"...well it's true for men too we just don't like to admit it or understand it. smile

Personally as I've shared I can test REALLLLLYYYY low on T levels however I discontinued the replacement therapy as it was difficult to maintain even levels so my moods were all over the place. I found that through diet, exercise and some other tricks I can keep myself consistant. I'd like to share some thoughts and those tips here.

EXERCISE: Even if Alex is on testosterone replacement, exercise will help his moods. Testosterone serves several purposes in the body, one of the most important is muscle building and if he's building or using muscles he's using that testosterone as opposed to having excessive free testosterone in his body which will cause swings on the really high side or rages in some people (me!). Exercise will also help on the self image, I may be disfigured but from the neck down I look phenomenal (if I do say so myself and I do!) and that helps my confidence, gives me the swagger to do what I do.

DIET: I'm almost completely on a liquid diet and I do just fine with it. I only eat solids when I'm "highly" motivated (mj reference) so anymore that's about never. What I've found is that through juicing, supplements and Ensure I can give my body everything it needs to run at a high pace. If you know anything about my lifestyle I run hard. I work long hours (average over 80 per week) and exercise hard so my body gets the fuel it needs to keep going. Diet will also effect testosterone levels and therefore your moods. I balance my protien intake (.55g/lb of body weight) as excessive protien in your system will lower testosterone levels and I distribute them throughout the day to get my body into protien synthesis (converting protien to muscle). 3 meals out of 5-6 has to have 30g of protien to do that. The more muscle the more T. I use a whey protien powder for most of my protien intake as it's easy and mixes well with Ensure.

Fats, if you've ever heard about the "Greek Physique" (greek god statues, etc...) they actually attribute that to Olive Oil. Fact is the more good fat you have in your system the more T you will produce. Olive Oil has 14g of fat per "tablespoon" and 140 calories, it is a phenomenal supplement to Ensure. Cocunut Milk and Peanut butter you can use as well, I use all three throughout my day. Most of us on liquid based diets lack good fat so we will lack T as well if not addressed.

Supplements: Horny Goat Weed, Ginseng (I use Korean) will up T production and help sex drive! Yohimbe you can use as well..it has amazing benefits but has interactions with MAOI's and has other effects you have to be careful with. It works well though as it increases blood flow to the male and female sex organs. I use all three but I'm very careful with the Yohimbe and only break it out on "special" occasions wink

SEX and sexual organs: There is a reason why testicles sound a lot like testosterone...they are important! Not only do you have to make sure they see regular duty but you also have to make sure they are in an environment to thrive! Unless Alex is exercising he needs to keep the boys hanging...boxers baby. Keeping those guys cool and free will help testosterone and normal sexual function.

Sex is very important to any guy. He needs to get excited, best to do so in the morning and that will promote a good outlook all day. The reason...testosterone! Does it for women too actually. When a man's excited he will transmit T through both saliva and semen to his partner giving them the added bonus too. Endorphans aren't the only cause of well being after sex wink testosterone is a magic thing. Even if you are too worn out for it, there is always other means and as adults we need to understand there is nothing wrong with masturbation or getting sexually aroused. As with anything though there has to be balance and boundaries.

Anyway what I found for myself through these tips is I've been able to get my 70ng/dL testosterone reading to a healthy 450+ level natually, consistantly and that has evened out my moods, given me a fantastic outlook with the added benefits of looking and feeling amazing.

Sorry for the novel, hope it helps.

Live life, be well

Eric

Last edited by EricS; 07-30-2011 09:19 AM.

Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
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