Hi,
Gordon has been off the fentanyl patch for awhile now, and finished tapering off the oxycodone on Aug. 3. He doesn't really have any pain, so doesn't take anything for it. The only meds he's currently taking are prozac and mirtazipine for depression (neither are really working, by the way). His appetite is nowhere, he has no saliva and wonky taste buds. He's managing to eat, but it's a struggle psychologically. He finished treatment just a little over 3 months ago.
He says he feels worse now than he did 2 months ago - just generally "sick", as he puts it, very tired, longer walks tire him right out. Blood work is "normal" and his recent PET scan was OK. He had pneumonia for about 3 or 4 weeks before it was detected on July 22 and he got on antibiotics at that point. He finished those last weekend.
Is it normal to feel this wiped out and generally run down at this stage of recovery? I keep trying to think of reasons why he's feeling so badly, and the medical people think he's doing just fine.
Thanks, Anne

It's normal. Took me months to recover somewhat and even to this day, I still get tired easily. He's been through alot and the pneumonia knocked him down even more, give it time, he will get better.

Anne

Fatigue can last until he is 2 years post treatment. Even then it could linger on as an after effect. There are many reasons he is fatigued....he battled an aggressvie cancer and the treatments were brutal!!! It was the fight of his life. Bloodwork may come back and be ok but physically it takes everything out of alot of OC patients. The pneumonia sure didnt help him perk back up. That was only found a couple weeks ago, has the doc said he has recovered from this? Its good that he is able to go out for walks. Keeping them short is best til he builds up his strength again. Be prepared that this could be your husbands "new normal". It takes most patients a solid year before they are feeling pretty good. This cant be rushed. Unfortunately too many people think that once tratment is over that life returns to how it was before. Best wishes to your husband on his continued recovery.

Thanks for your comments. The only people who seem to be able to give us answers are the ones on this Forum. I really appreciate your support and thoughtfulness.
Anne

Anne, I feel for what you are going thru. I was the patient and kept thinking I would return to how my life was before I got sick. Every time I got close, I had a recurrance. At this point, I finally realize my life will never be what it was.

I cant even imagine what it is like for you waiting for your husband to return to his old self. It must be awful watching him go thru the treatments then pnuemonia and now at 3 months post tx he still isnt better. It could be a long time before he bounces back. I hope he steadily improves to get close to how he was before. Best wishes with everything.

Anne, I know three months feels like a long time(it does to me too) but I think given the intensity of the treatments it's not.
I find myself getting excited over all the small steps that my husband is making. I dance a jig when he gains a pound, or can eat a little more than the day before!!!

As a therapist,I can't help but wonder if a part of the fatigue is also due to the anti depressants not doing their job right. Depression can knock you on your butt energy wise. Have you had him evaluated recently by the MD prescribing his anti depressants? In addition to time to heal,he might need some medication management(or is he open to any kind of counseling?).

Individual reactions vary wildly but post TX fatigue is quite normal. Plus IMO an Oral Cancer patient would have to verge on being psychotic totally divorced from reality not to be DEPRESSED. But both my fatigue and depression never seemed to get better until I started on thyroid medicine.
While my CCC doctors were top notch on Cancer, for related issues like Thyroid - "not so much". I was not only extremely tired but also froze for two years, even in summer, and kept a winter coat on in air conditioned places yet I was constantly told: "Your TSH levels are normal" and I did not ask for the actual numbers or test results. Turns out however there is controversy over what is the right TSH level with labs having a 5.5, a 4.5 even though endocrinologists who went to Medical school the 21st Century consider 3.0 as the highest acceptable level. Before TX, I had a TSH of 1.6 and after TX it shot up to 4.3. Now that I am "on the pill", I am finally warm again. Plus my energy is back My TSH level went down to
3.04 on 25 mcg ,2.17 on 50 mcg and now 1.73 on 75 mcg. Of course there could also be nothing wrong at all with Gordon's thryoid . But it could not hurt to have a TSH blood test done. I only hope it's that simple. The rest of oral cancer certainly has no simple solutions.
finally, you are right that only caregivers and patients can truly understand the aftermaths of TX.
Charm

Anne, I second and third all previous comments. I could barely walk for 6 months post RT. It's normal to be exhausted considering what our bodies have endured. Tell Gordon to hang in there and things will improve!

David (er, 2, that is)

Thank you, all. I don't think the anti-depressants are doing anything, and we've lost confidence in Gordon's shrink because of this (he's Prozac happy and won't prescribe a change). So we're going to the GP to see if he can give Gordon something else. As for the thyroid, I don't know what the results were on his last round of blood tests, as we were told everything was "normal", but I'll ask for the actual number and take Charm's advice about being retested if the thyroid wasn't checked. You guys are great. Anne

Hmm... dunno why any doctor would be "prozac happy" as there are a number of newer and better SSRIs on the market today, as I'm sure you know. Sounds a tad suspicious to me. Anyway, keep us posted.

d

We don't know why this psychiatrist is so stuck on Prozac. It's become very frustrating, as this drug and the mirtazapine are clearly not doing anything for Gordon. This Dr. gets good ratings on ratemds.com, so I don't get it either. But if you're so stuck on a drug that you won't make a needed change for a patient then there's something wrong somewhere. We're going to discuss it with the GP on Thurs. Anne

Anne, I am 6 months post treatment and still get fatigued easily. I am also on zoloft for depression, and have had awesome results with it. I know others haven't, but I feel like a new woman when I am on them. The dry mouth is also an issue. I am a teacher and I have to fight through the fatigue and sometimes I have to start my day with a big cup of coffee or get on in th middle of the day just to function. Your husband is not alone in all this.

Anne:
Gordon will be fine, just stick by him (As I'm sure you plan on). Everyone has said how it takes time so I won't elaborate. It all varies so widely. Almost 4 years out and I still feel tired on some days, some food has no taste, the whole saliva issue, etc., etc. But I have come to realize that I can visit my wife everyday, see my lovely Kids and Grandkids, and I'm on the green side of the grass. It takes some longer than others to figure all this out. There is a "new Normal" out there so stick with him and you both will continue to grow.
Steve

Anne, getting someone on the right anti depressant is not always easy and any psychiatrist knows trial and error is involved. I look at this way, if he had an ear infection and was on an antibiotic and it didn't work,it would be silly to keep prescribing the same antibiotic. I don't know any MD that would do that.
It's the same with anti depressants. I have clients that have had to try three or more types and/or combos before getting the ones right for them.

I'd be more than happy to try to answer any questions I can about various SSRI's or other anti depressants. let me know if I can help.
I'm stepping off my soapbox now but it just makes me so pissed to see someone not being helped that certainly can use some assistance to get over this hump!!!

Anne, good plan to talk with your GP about the antidepressants not working. Hope that they are able to help Gordon. You are doing a great job being a caregiver. Dont forget to take time for yourself too.

Thanks everyone. I was starting to feel like a voice in the wilderness at home. It's good to know that I'm not alone in my opinion about the antidepressants Gordon is taking, and that the way it's being handled is just wrong, wrong, wrong!
Anne

Thanks Steve, and I will stick by him. He would help himself and everyone around him if he were more of a "glass half full" kind of guy. But he never has been, and this would be a really hard time to see things differently. Maybe it will come over time, though. Anne

I finished just radiation about the same time as Gordon. I did not have as extensive a surgery but then they almost killed me with pain meds in the hospital I ended up in ICU on an intubator for almost a week before they called in a specialist. I was already on Wellbutrin and Zoloft. The Zoloft was increased before radiation. About a month ago I was at a stop light so tired I could have cried. I felt sad, tired, over whelmed, hopeless that is when it hit me that those are not symptoms of fatigue they were Symptoms of depression. I called my Shrink, he got me in the same day. He agreed that it was depression and increased my Wellbutrin. Within 3-4 days I felt almost like my before self.
I am worn out at the end of the day and I don't do much on the weekends but I am also working 8-10 days getting ready for a state audit so I am very happy with my progress.

OK....I am of the mind that "nothing" should be kept off the table when it comes to a cancer patient getting through this ordeal. I've had a few famous discussions on these boards (some of which I'm not proud of) about antidepressants. I am for them IF that's what a patient believes they need to help them through a situation.

The studies on the effectiveness of ALL antidepressants aren't great...up to 50% of those on the various types (SSRI's, MAOI's, TCA's etc...) don't report a difference when on them and then consider the "placebo effect". Point is...antidepressants aren't the end all be all when it comes to depression.

As far as fatigue goes...I've suffered from CRF (cancer related fatigue) for over 2 years after treatment. I no longer take pain meds, my thyroid levels are fine...but I did find that getting my testosterone levels checked and then supplemented helped me some...as well as upping my B vitamin intake. I use 5 hour energy, they came in especially handy when I opened up my own business and started working 16-18 hour days but I still "hit a wall" often where I just can't do anymore and have to just rest.

Keep your chin up

Eric

I am great from about 6 AM until 2 to 3 PM then my clock needs wound again. If I sit down in my easy chair, within 10 minutes the time moves forward an hour or 2. I try to work my way thru this period.

Jim,

What are you, a 114 or something like that! You should expect to need a little rest now and again. lol

LOL No comment David > Maybe close but no cigar yet.