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severe pain,cannot swallow,bleeding 3 months after radiation, depression--What can I do?

patty1956
Posts: 1
Joined: Oct 2009

My brother finished chemo and radiation Aug. 5th 2009,almost 3 mos. ago for base of tongue cancer & one neck lymph node. They don't see any cancer. PET scan is Nov. 6th. He is 51 yrs. old.
He still has severe throat pain, even with the pain medications. Cannot swallow--They say his windpipe won't close, and he's seeing a swallowing therapist. He is coughing or spitting up blood, and also dealing with the thick mucus. More & more depressed, but won't talk about it. We catch him crying. Very irritable with his wife.
Obviously--His doctors are not anwswering our questions. They say this is "normal." I want to know why these things are happening, and anything we can do to relieve any of these problems.
Thank-you in advance for any help with this. None of the family has ever been through anything like this. I look on the internet at times, but it's been very hard to find answers to these specific questions.

ratface's picture
ratface
Posts: 1254
Joined: Aug 2009

"They don't see any cancer" I finished three weeks ago and don't have any of the side effects that your brother has. I'm 50 y/o. However I would take all his side effects if I knew the cancer was gone. The PET scan is not too far away for him. A clear scan should help tremendously with the depression. I think healing will follow soon afterwords. Someone needs to be more persistent with those doctors, keep asking for explanations of what may be causing his side effects?

santa6
Posts: 29
Joined: Oct 2009

I just completed chemo and radiation for neck cancer with unkown origin. This means they had to aggressively go after my entire neck and throat. During the treatment I hit such a low with pain, vomiting, fevers and weight lose that I had to be hospitalized for a week. After they got the fevers and vomiting addressed, a specialized pain management team worked with me to develop a plan. The most criticial part of treatment and recovery, in my mind, is the NEVER let the pain get in front of you.

My Drs say the same. If that happens you stop eating, stop caring, stop hydrating and it becomes a vicious downward spiral.

Ask for pain management specialist to work with you on a plan. My wife and I have been quite succesful in managing mine since and it's made all the difference.

Hang tough

chinaberry25
Posts: 8
Joined: Apr 2009

My husband finished his treatment 6 months ago and still not eating. Uses a feeding tube and gets all the liquid that he can find to eat. A man told him that it take about a year to get back to normal eating.

cwcad's picture
cwcad
Posts: 117
Joined: Nov 2009

I am almost three years out and doing pretty well. I am still depressed and I am cancer free. So just because your cancer free does not make a happy man. I am not sure what the reason is. Because I had tongue cancer and with such and aggressive regimine of chemo and radiation for seven weeks the effects of the treatment were not to it fullest until several months after completion. In fact I did not get sick at all during treatment.

You cannot make your husband happy. It would be my suggestion to to tell him that you are there for him and love him. Prayers are good as well. Everyone's story is different but I relate very much to what your husband is going though. If it were not for my wife and children being here I would not have even gone into treatment. Trying harder does not help. Make sure you let him know that it is alright to rest. I can honestly tell you that every time I did more than was comfortable I paid for it in spades. I always thought that I was a strong man. But after losing 160 pounds(I needed to lose a 100 pounds) I am weak and skinny. Not something that I am used to at all.

Not that I am doing what I say... the best way to get well is to have a good attitude. In other words don't do what I do but what I say. LOL!! IT is hard to stay happy when you are not. That is what i am missing and do not know how to get it back. It is there but I do not feel it. Telling myself that I should be happy does not help it merely adds to the problem.

thegirlfriend's picture
thegirlfriend
Posts: 147
Joined: Sep 2009

the human brain is an amazing and complicated organ. We are wired to do what is best for our mind and body, sometimes chemical imbalances prevent that from occurring, not listening to ourselves, looking for quick fixes but we all have some idea of at least what not to do.
you did your treatment because you knew you needed to do it because you have a family.
Can you do the same thing now to take care of the part of you that is sad like you did for your physical health? do it because you have a family.
maybe get a personal trainer to help build your body up again, at the same time going to your support group, or even hosting a support group meeting if you dont have energy to go to another place.
Can you put your mindset in the same place for your family like you did when you decided you had to get the treatment to begin with? This undoubtedly is just as hard for them to see you wilting mentally/emotionally as physically. You fixed your cancer, you beat that part, but its still screwing with your head, and maybe you are letting it get away with that. It couldnt take your body and wreak havoc with that so its going after your happy and trying to drain you of that. you havent let it totally take you because you are posting here and you still have a sense of humor left. You put in capital letters LOL!! Its not gone because human beings are resilient and you dont want to be in that place more than you think.

Youre holding on harder than you think you are. Just keep going. the more energy you get, the better you will feel. I promise.

Even if it means that you have to watch tv comedy all your waking moments!! lol!! anything that will promote happy to at least get yourself more exposed to it more than you are giving yourself now, at least by the sound of your post. Laughing helps. I should know. I did 25 years of 911 calltaking. I dont watch lawyer shows, police shows, only comedy. because i had my fill of negative and sad things on that phone. You know that laughing releases feel good chemicals in your brain, we all know this. It sounds hokey and naive, but i dont care. During this whole 3 months since the diagnosis of my boyfriend, i made sure i watched enough funny or had it on in the background when i was feeling my worst. It didnt make me all happy, but it kept me from getting more sad. I cant be with my boyfriend, he is 8 hours away, 540 miles, and wont let me see him feeling and looking so badly.
I would love to see him. Not yet though. Nothing I can do except txt and call him, and watch my funny stuff, and do what i can to expose me to as much happiness and beauty that i can. Maybe it wont always work for you, but it surely wont make you more depressed or sad. You can only try it.

take care of you....

thegirlfriend

cwcad's picture
cwcad
Posts: 117
Joined: Nov 2009

I remember laying in my bed with the food peg and the pump watching Rachael Ray and the whole food network trying to entice my taste buds to activate. I tried everyday to swallow something. Each day I would spit it out. It tasted and felt like concrete. Until the day I tried to swallow some Sugar Pops cereal. I couldn't swallow but once. That took a year. Now I can eat most things but the involuntary control of my throat still causes me to choke at the most inopportune times. I don't watch much food network programs any more. I am glad that you reminded me to do something that I had already employed with some success. See...I forget. A lot of things are really a fog. I was there but really I was only watching my life from the cheap seats...Not engaging it.

thegirlfriend's picture
thegirlfriend
Posts: 147
Joined: Sep 2009

I was a little worried that I spoke out of my place since I am not the one who
has the cancer or had the cancer. I really truly believe exposing yourself to
funny has some merit to it. Or if you love listening to your loved ones laugh
at funny stuff, make them watch with you so you can hear them. Exposing yourself to
feel good stuff may only keep you just above the water, but at least you arent
drowning, and who knows, you may enjoy yourself for 2 min or 3 min or 30 min. Same way
you have to heal your body by keeping on swallowing, or what have you, the mind needs to be
taken care of as well and that in turn will help your body. Tell us, what can you remember is the funniest funniest comedic routine or situation comedy or movie that you laughed at so hard you cried, or almost peed your pants? Any of you out there?
Can you remember? Everyone has one. You can undoubtedly find it online. Get it.
play it, and enjoy it. Laugh, smile, whatever it takes to heal you. Youve got more time now!!
I know it sounds sappy, and corny, but i truly believe it and live it.

Kathy
thegirlfriend

Kent Cass's picture
Kent Cass
Posts: 1747
Joined: Nov 2009

CHINABERRY25-Are you in the midwest of America? If so, your path may have crossed mine in the QCA. Please respond if the QCA applies to you.
kcass

pmfennell's picture
pmfennell
Posts: 28
Joined: Jun 2009

Hello Patty,

I am 6 years out from base of tongue stage IV-A next month and still experience the pain and the blood. I live in NE and go to Fl during the winter to ease the pain. I am on Oxycontin 5 times a day and Fentanyl patches I change every 3 days. Your brother's pain, mucus and blood will decrease with time. It also sounds like he is experiencing symptoms of depression. In my estimation, this is the one you should get right on. Check with your docs and see if there is a support group for survivors that he can attend. Most hospitals have these. Yes, what your brother is experiencing is normal for a cancer survivor, but it is NOT normal for him and his docs. should realize this. If his pain is too much, get his docs. to increase his pain meds or refer him to a pain management clinic. Being in pain all the time can be depressing. Not being able to eat and swallow is also depressing. Your brother needs an advocate and not allow his docs. to not answer your or his questions. I have never heard of such a thing. I treated at a larger hospital in NH called Dartmouth Hitchcock. I choose this hospital over Dana Farber which was closer to where I lived because I made a connection with the doctors and felt I had a team of docs. that worked towards the common goal of making me well. I still have bad cancer days and am a bear on occasion. This symptomatic of depression. Get after his docs. for answers and beware of signs of depression. Good luck and I wish you well.

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

HI Patty,

It's a month or so since your post and I hope you have a handle on your brothers condition but my experience had some similarities.

I am 7-8 weeks out of treatment. 2 weeks out of treatment, I went into a tail spin, wasn't coping, crying and in pain, PEG difficulties, coughing fits leading to vomiting, losing weight and totally lost. I was ready to give up and saw no light at the end of the tunnel. I was readmitted to the hospital and when the Oncologists saw my condition they called in a Psychiatrist who immediately diagnosed me as clinically depressed. They changed my medications and turned my whole life around in a few days.

It sounds like your brother is suffering depression and it is serious BUT it is treatable. Many cancer patients go undiagnosed and suffer terribly. I would suggest of you haven't done so already, seek help as above. Once this is treated, the other issues are easier to deal with.

I have posted previously that I was prescribed 'Fluimucil' for the mucous reduction. If he is has a PEG, then you can look at alternative supplements to feed which reduce the mucous as well.

One other thing I found VERY helpful (thanks to my Naturopath) is I take Glutamine power in water. This is an amino acid and a primary food source so it will assist healing the damaged membranes all through the mouth, tongue, throat and digestive tract. Available at good health food outlets and some Gyms. I take about 2 Teaspoons a day in water. For a long while I couldn't drink water but when I added the Glutamine, I could drink it ! Great stuff, Google it and you will quickly learn its' value for healing and wellbeing.

I am doing fine now even though I have low days and OK days and good days, it is nothing like when was not treated for depression. I sleep pretty well now, socialize better and am on the road to a good recovery. These pages are great for sharing information and experience and I have just found them and am enlightened and relieved to find an outlet where I can gain help AND contribute.

Let us know how things are going.

Regds
Craig - Scambuster

fishingirl's picture
fishingirl
Posts: 188
Joined: Nov 2009

I'm so glad to here that you are doing better!! We all have good days, bad days and so so days. In fact I have days that go from bad to good to so so to good again and on and on. All in 1 day!! Now if I could only hang onto the good days all of the time!! lol!!

Fishingirl (Cindy)

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