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almost final pathology

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Hey everyone,

Had a pretty busy and informative week. Saw my OTO today and he said everything looked good healing progressing fine. Also met with my rad onco and really better understand what lies ahead for me. 33 daily treatments @70 grays beginning about the 20th of this month. The onco has already prescribed a mouthwash mixture of benadryl/maalox/xylocane and a scrip of caphosol. He also said that there may be a need for other narcotics as well. So, I feel very comfortable with him and his willingness to do whatever is needed to help me through this. Also, he will administer amophostine but insurance companies no longer want to pay for this so it now can only be given through an I.V.,no injections as this not the approved "indication" for administering this drug. Makes the visit about 1 hour instead of 15 minutes. One way our health care system is messed up. Not an endorsement for health care reform, just an acknowledgment there are some things that need to be fixed. Also met with a general surgeon Tuesday and have decided to get the peg. The peg and port go in the 17th.I will meet with My med onco Monday, and I already know that I will be be getting Cisplatin and Fluorouracil. Also know that these ,(Chemo and rads ), will be given concurrently. Had my mask fitted today and got my stitches taken out. Go for a follow up with the oral surgeon tomorrow and then I think I'll rest a little while. So I thank everyone for helping me so far, your knowledge and real life experiences really helped me to know what I needed to ask for and about. Thanks so much everyone!!! Keep me in your thoughts and prayers, as I will do for all of you.

Steve

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

I got the mask last week and the PEG will be next week. I'm not getting a port because teh cisplatin 9and other stuff) will work with IV. My guy is saying no to amifostine unless the treatment plan shows parotids will be cooked. He's saying the reaction to this drug can be debilitating and in my case the benefit is not enough warrant use. He's going to get back to me on if he thinks the plan will damage the glands enough to suggest usage.

What was getting the PEG like?

Best,

Mick

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Hey Mick,
I haven't gotten the peg yet, it and the port go in the 17th. I can tell you its going to be what is actually a PRG. Just means an endoscopy is unnecessary and it seems to be a little bit easier on one's system. It is Radiologist assisted in installation. My onco
said that with the location of my cancer that the amifostine's benefit in my case would outweigh the negatives. Put it like a possible 40% normal without and 70-80% with treatment. I don't know Mick, but I am really comfortable with this guy and I trust him.

Hang in there,
Steve

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

"You might get depression sometimes" suggests a gross misunderstanding of clinical depression. People with depression do not 'get' it once in awhile; they either suffer from depression or they do not. When one visits a therapist, for example, for treatment of depression, the therapist is not apt to ask, "Well, did you experience any of that there depression this week?"

"You will probably have depression" reveals a gross misunderstanding of the relationship between chemotherapy and depression. Most people DO NOT suffer from depression as a result of chemotherapy, at least according to the research I've read.

Casual suggestions that "you will get depression sometimes", that "you will probably have depression" do an injustice to those who DO suffer from depression, chemotherapy or not, while also conveying misinformation to those about to undergo such treatment.

Gentlemen, I suggest that you go into treatment with positive attitudes, as others have suggested, with the expectation that you will come away from it without any depression you did not have before entering. This depression thing is one self-fulfilling prophecy you do not want to be part of.

Best wishes for a more or less uneventful trip.

Take care,

Joe

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Hi Joe,
Yes depression is a much misunderstood affliction. My mother was a manic depressive. She was so bad that she tried to commit suicide 3 times. My father died of alzheimer's and one year and one day later my mother was successful in her attempt at the afterlife. It is true that depression absolutely can ruin a person's life. She would be at the lowest low one could imagine and 3 hours later be on a shopping spree spending money she did not have. They call that a "High". She either would not take her medicine or the medicine was not right. Quite a handful to care for. I sometimes feel down but I certainly would not consider myself depressed. I know that I am probably in for the ride of my life emotionally in the next few months but after watching and caring for my mother I just do not think that I will let it get anything close to depression. I am too strong for that. I am going to make it through this no doubt in my mind. So here's to an uneventful trip!!! Thanks Joe and take care.
Steve

debbiejeanne's picture
debbiejeanne
Posts: 2229
Joined: Jan 2010

Steve, I cannot begin to tell you how sorry I am about your parents, especially your mom. I've faught depression all my life and take medicine everyday to help me with the battle. I did get very depressed during the cancer battle but I would post on here and the people were always kind enough to respond. The CSN site has helped me more than I can say. Sometimes times I don't even has to post, I just read. It is just really nice knowing that the people here TRULY know what we are going through, feeling, saying, asking, etc. So, whenever you have something to say, something to ask, or whatever, come the the CSN site and say it. Everyone is here for you!!!
I pray God will be with you (and everyone) and help you stay strong through this journey. Again, we are your friends so post anytime you want to!
God bless you,
Debbie

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Hey Debbie,
Small world, my sisters name is Debbie. Thanks for your post and I pray that God will help you in your battle with depression. My folks where great to me,there were just some bad times at the end for both of them. They have both been gone for over 25 years now and I still miss em both. Thanks for your encouragement and your prayers.

Steve

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

Hi Joe. Full disclosure, I am a Marriage and Family Therapist (finishing my MA in Counseling form Sonoma State University). I've worked in a free clinic for the past 1.5 years and have been helping people deal with depression and related anxiety disorders (plus a bunch of other stuff).

There is a continuum when it comes to depression and Dx and treatment very much depends, as you have nicely pointed out, on a great many factors. It is not a simple thing to deal with. I always suggest that if anyone is feeling down, they talk to someone about it. Preferably a trained counselor (that is my bias), but treatment begins when we can talk about how it feels sometimes to anyone who will listen.

When I found out I had scc I had to stop working (I had 11 clients at the time) and it depressed me to have to walk away from that good work. I talked to my own counselor and my supervisor and teachers am in a good place. Plus I have a lot of friends. Heck, even a couple of my clients called me! If you can talk about it, people generally show up to help.

If I can help anyone in any way, please do not hesitate to contact me directly. I cannot, ethically be anyone's counselor, but I am a very good listener ;-)

Warmly,

Mick

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Small world! My daughter has her MA in marriage and family counseling and I had a double major in english and psychology when I was in college until I realized that all of my psych professors were nuts :).

It sounds to me like both of you guys have some experience with depression in your lives, either professionally or personally, and did not need my encouragement and enlightment :).

Still, keep in mind that a whole lot of other people read these posts and take the responses to heart. It is necessary, I think, to let them know that they should not be afraid of chemotherapy vis a vis the depression thing. It is one thing to advise folks that maybe the behavior and moods they HAVE experienced are a result of treatment; it is quite another to casually suggest that treatement WILL result in certain consequences.

I am confident, Mick, that you would agree.

Take care,

Joe

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

Nothing about mental health is casual! What we always say is "It depends".

Best,

Mick

Hondo's picture
Hondo
Posts: 5608
Joined: Apr 2009

I had the amifostine with my first cancer treatment, but not with the second cancer treatment. Did it help or not I don’t know, one doctor swears by it and the other said it does nothing to help with affect of radiation. All I know it cost $600 bucks a pop.

As both of you guys start on your journey you might get depression sometimes , just keep your positive attitudes and know that the light at the end of the tunnel are all the people here on CSN applause in your behalf.

Take care

debbiejeanne's picture
debbiejeanne
Posts: 2229
Joined: Jan 2010

Hey guys, I agree that you will probably have depression AND that you should hang in there for there is light at the end of the tunnel. It will be a rough road but you can and will get thru it. The people here on CSN are awsome and will be there whenever you need them. I think you aksed about the peg, well I have one and it is nothing. That is the easiest part of treatment so don't worry about that. It is very important tho that you stay positive, that is very important.
I wish you and everyone here the very best and I also keep you ALL in my prayers. I am so sorry for all of us and the stuff we have to go thru but I'm EXTREMELY glad that we all made it thru the journey and you will too!!
God Bless Us All,
Debbie

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

Steve- you'll be getting the same chemo as I did, though I got mine via 96-hour pumps I carried, twice. Do hope the severity of things does not hit you as soon as it did me. May not, and you may not even get there. I'm 15-month, now, Steve, and doing very well. Try to draw a strength within yourself, knowing you will get thru this, which you will. It was because of the pumps that I got my Port installed- they were hooked to the Port. The PEG is very likely a good thing- trust me. I used 4.0 formula. Get the over-the-counter stuff for both of the regularity extremes, as I found necessary. Not sure about the mouthwash thing your Dr. has told you of- all I know is that I was given Magic Mouthwash, and am not sure of the ingredients. Not gonna be easy, Steve, but you'll be fine.

Believe.

kcass

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