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Post treament depression

Lena Rose
Posts: 73
Joined: Apr 2010

Hi Everyone-my husband finished 7 weeks of chemo/rad on June 10th for BOT stage III SCC HPV+. He says that this is harder than going through the treatment, at least treatment had an end date. He is still not eating or drinking-even water irritates his mouth/tongue which is still very raw. He (we) thought that he would at least be drinking an ensure a day but he cannot even get a sip down. It's getting harder for him to swallow pills. He is also spitting up thick mucous every 15 minutes and continually all night long. He thought he would be back to work in September but that won't be possible if he's not eating. I've been trying to stay upbeat throughout this whole ordeal but it's getting continually harder. I know everyone is different but just wondering how long it took most of you to start drinking/eating. Thanks for letting me vent and thanks for sharing.

Kimba1505's picture
Kimba1505
Posts: 557
Joined: Apr 2010

LenaRose,
I sent you an email. Know that I am thinking of you and your husband and sending only the strongest of energy your way. When it comes to wanting super powers, my 16 year old son wants x-ray vision, my 13 year old son wants to be able to teleport...me, I always wanted the power to heal. I will send what I've got.
Kim

CajunEagle's picture
CajunEagle
Posts: 357
Joined: Oct 2009

Lena, I finished up at about the same time as your husband.....but a year earlier (2009). During that July and especially August, I was about to go nuts. Couldn't eat (glad I had the Peg Tube).....barfed at least 6 times a day.....couldn't speak....unable to sleep at night except for maybe one hour due to mucus congestion and coughing....very weak and dizzy most of the time. It was pure hell, and much worse than treatment time. Around the second week of September, thing started getting a little...and I mean a "little"...bit better. Had to go through speech and eating therapy, which was a hoot. That was "my job" during the fall of 09. Work, work, work on learning to eat, drink water, and speak again. By the first week of November, I felt half-way normal. Wife and I decided to take a trip to San Juan just to change environs, and that really helped. I had stage 4 tonsil cancer, with no surgery, but 36 rounds of Tomography radiation and 6 rounds of cisplatin chemo, along with two taxtera and 2 rounds of 5fu. Thing WILL GET BETTER. Believe me.

Larry

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

I was stage IV with unknown primary (nasopharynx suspected) and lymph node involvement. I had surgery in January and treatments (chemo and rads x7 weeks) started in February. My prognosis is very good for long-term, disease free survival

I tried to keep eating through the treatments and almost made it. But with one week to go and me losing a pound or two a day because swallowing was so painful and difficult I had to get a feeding tube (PEG) installed. Now I am 18+ weeks post-treatment. I had exactly the same symptoms as your husband in post-treatment. I had already given up swallowing so he's doing a little bit better than I was. What was/is better for me is the PEG - at least I was not losing weight and was getting very good nutrition.

I *still* have the PEG. I *still* have a lot of mucus, but the sores are just about gone. I'm going to have an endoscopy on the 16th to see if they can do anything about swallowing - they may try and open it up a bit so I can at least have fluids.

If your husband does not have a PEG he needs to think about getting one. If he can't eat he might start to lose too much weight and that can complicate/extend his recovery. Getting proper nutrition is key to fixing or growing damaged or dead non-cancerous healthy cells. Without proper nutrition the re-growth will take longer.

This treatment is considered (by many Drs) to be the most brutal of all cancer treatments. The damage to the mucosa and throat are so severe (pain) and the body's reaction so annoying (mucus and tube feeding) that it changes EVERYTHING about who and what we were/are, hence the 'new normal' paradigm. Coming to terms with this road is the first step to enduring it. The pain and annoyance will not last, but it will take a long time for change to feel significant. It is likely I will not feel the significant change until a year past end-of-treatment (April 2011), so I have dug in for the long haul.

You both have the strength to see this through. Keep us posted.

Best,

Mick

Skiffin16's picture
Skiffin16
Posts: 8062
Joined: Sep 2009

Can't remember if he has a peg or not....but doesn't matter I suppose. I didn't have one, and got through, so can he. Not easy, but you got do whatever it takes.

For me that meant a routine... I would prepare everything before hand so I didn't waste anytime. I would get my magic solution or liquid hydrocodone ready, dissolve a percocet in about a 1/4 glass of water. Pour a glass of Ensure, a big glass of water (that tasted like sweat), a few DelMonte Sliced Peaches in Light Syrup (to slide down easy), and sometimes some canned Spinach.

I'd take a spoon full of the liquid drugs, drink the Ensure, drink most of the water, eat the peaches or spinach, drink the percocet, then finish the water.

All in about 5 - 10 minutes...then run to the warm shower, because I'd be in pain and that made me feel better.

I did this routine usually 4 - 6 times a day if I could.

Not the best diet, but it gave me the most bang for the buck and small time for pain threshold.

Best,
John

RushFan's picture
RushFan
Posts: 218
Joined: Aug 2010

I tried really hard to drink the Ensure/Boost morning, noon & night. To do this, I tried to keep ahead of the pain advances, as did my RadOnc.

About every two hours around the clock ( I could not sleep but an hour or two at a time) I would get up, pour my 2 tsp. liquid hydrocodone over an ice cube with a little Capri Sun fruit punch and "sip" it down. Then drink an Ensure. I kept the Ensure in the fridge.

As the pain grew worse, we added fentanyl patches, 25mg, then 50mg and finally 75mg. Has some liquid dilaudid, but I hated the taste and it made me feel foggy, only took it once.

As soon as I drank the Ensure...which could take 30 minutes, back to bed. Some days I slept 20 hours a day. All I did was drink an ensure and sleep. No talking etc. I lost 30 pounds, but avoided the PEG. I drank around 6-9 bottles per 24 hr. period.

The three weeks after treatment I really struggled. I got a sinus infection and it kicked by rear. BUT...then every week I started feeling a little better and better. The depression affected my wife too. The "when will things get better" feelings were with us both.

I'm 12 weeks post-treatment now. Eating 90% of my calories, working about 35 hrs. a week and starting to do light exercise.

Hang in there, it will get better.
All the best to you and everyone here.
Chuck.

JUDYV5's picture
JUDYV5
Posts: 392
Joined: Jun 2010

I finished the same time your husband did (35 rads 3 chemo). I had a SSC on my hypopharynx. I think I am recovering a little faster then your husband. I could always swallow with a little effort. At two months I am still taking 32 oz formula by tube. The rest of my nutrition I am taking orally. I am eating a lot of hamburger patties. If it is getting worse give the Oncologist a call. I did have a lot of problems with Thrush and I still take meds for that. I do hope he feels better soon.

dennis318's picture
dennis318
Posts: 349
Joined: Feb 2010

My roughest time was at teh last 2 weeks in radiation and Chemo, I couldn't eat a thing for 2 weeks and took hot baths at 2:00 AM, standing head over kneeling in teh tub, to drink Ice Water, It was teh only thing i could get down, I would cry, drink till i couldn't drink anymore and puke. It was hossible, this is where i lost most of my weight, it took 2 weeks of this ritual, to make it, I knew I was either going to die or make it, and I am not having a drama moment, then I would try to get myself to gether and go to work. I ended up there puking as well, I had no job that offered sick time, and worked there for 6 years, i had to work to pay bills, I asked god to take me so many times, he left me here for a reason, i am getting stronger each day, I don't have a voice, but I don't care, I'm up 18 lbs, 158 from 140 lbs....Do Not give up, Hang tough, what ever it takes, try the ensure again with ice cream, anything, or a cream soup....if you don't feel like it...give it a shot a little later, it turns around...Take care , Dennis In Tennessee

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

Hi Lena,

Yep, he is going through that long hard flat part where improvement is almost not detectable. It can be emotionally traumatizing so if he in or seems to be slipping into a depression, get some support from your doctors. This is important. if you are not satisfied ask them to refer him to a psychiatrist. It is very common to suffer clinical depression and if so, it really should be treated properly as this could assist his recovery substantially.

On the pain and mucus problems, I would strongly suggest you get a tub of 'L-Glutamine powder'. This stuff is very good to help the mucosa heal and also he should find it will neutralize the burning he gets in the mouth. He should be able to drink water if it has the powder mixed in. Usually 1-2 teaspoons in a large glass of water. Use it to swish around the mouth and then swallow it. If he tries to eat or drink something that burns, take a swig of the water with Glutamine powder and it should stop the pain immediately. It is also great to help his body repair.

There is good medication posted earlier that helps break up the heavy mucus. Someone may chime in with the local product name (was it Mucinex ??) it helps a lot during this phase he is in.

He does need to keep trying to eat. I started with rice gruel - just boiled rice with the water still in the mix. Hurt like hell but I slowly built up from there. While not good for you, I also had the thick shakes from Starbucks. You will have to use trial and error to find things that are tolerable.

Just know it will get better and he will climb out of this rough patch.

Hope this is of some help.
Scam

Lena Rose
Posts: 73
Joined: Apr 2010

to all of you for your encouraging words, they are bringing many tears to my eyes. Yes, my husband does have a PEG tube-it has truly been a lifesaver. Thanks for all your caring support-this board has been a lifeline for me.

Lena Rose

debbiejeanne's picture
debbiejeanne
Posts: 2352
Joined: Jan 2010

Lena, I'm sorry your husband is feeling so crumy. Unfortunately, I feel the treatment was my easiet part and the recovering the HARD part. I am 10 months post 35 rad trmnts and I'm still recovering. My tastebuds are still messed up, I get the mucus, food still gets stuck in my throat and my voice comes and goes whenever it wants to. It is extremely frustrating, but it is getting better. Tell your husband to hang in there b/c there is a light at the end of the tunnel. I'll be praying for you and your husband,
God bless you,
debbie

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