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Larynx T4n1mo Squamous cell , one more time

zinniemay's picture
zinniemay
Posts: 534
Joined: Mar 2009

My husband.Non Smoker -non dranker
Dx Jan 2009 T4 N1 mo Larynx cancer squamous Cell Cancer.
Treatment Cisplatin Chemo and radation 7 weeks March to May 2009. face got a little red He lost a little over 50 pounds When I read about chemo and radation treatments and how people lost so much weight I worried . He was not so skinny guy and had the extra weight , And I tried to make sure he eat good while he could.
He has dry mouth still . He carries water with him .
May 2009 till May 2010
By May 2010 It spread to his Lungs. Metastic to Lungs
Treatment second time around Carbosplatin,other drugs I am not even sure of b-12 styriods.
just Chemo.
He is sick about a week after the treatment, heart burn . He coughs more . He had to take water with him for his dry mouth.
He still eats very good . He still watchs his beloved Lions football. He lost the taste for sugary foods. His weight has stayed about the same give or take a few pounds.
after his second round of Chemo they did a Ct scan It showed the four tumors two on each lung had shrink 30-40 % and one tumor completly gone. Now finished in his fourth Chemo this week. Sept 9 he will have another C.T.Scan.
I don't know if this is "Normal" or We just over excited . The Doctors seam to think this is very good
I am just so worried I am missing something, or someone is just going to say give up now.
I can't spend all my time doing the poor me thing. But I can't stop crying, cause I don't have the answers. cancer sucks, and while it does this to the person who has it , it sucks the life out of the ones who love them

Noellesmom
Posts: 1303
Joined: Aug 2010

I don't think you are wrong at all to be excited and hopeful! That is great news!

Cancer is very draining - take this time to feel good about the future and to make plans to move forward with your life together once the cancer is gone for GOOD!

kimmygarland's picture
kimmygarland
Posts: 313
Joined: Aug 2009

No argument there, for sure!

Sounds like you got some good news, and that's something to be thankful for! It's hard, but I am learning to celebrate the small victories.

Hal61's picture
Hal61
Posts: 656
Joined: Dec 2009

Hi Zinniemay, your news is encouraging. It's a better result that hopefully marks a turning point in your husband's recovery, so be hopeful because of it. We all do a little of the poor me thing now and then, cause cancer does suck, but just keep doing the "hang in there" thing too, because things will get better.

best, Hal

zinniemay's picture
zinniemay
Posts: 534
Joined: Mar 2009

I needed so much to hear this from just people. We hear so much bad things from Doctors. Why I don't know. Our family doctor moved so a new one came in for the next Three months, The office called wanted to see my husband when I came in for my check up. We wondered why, First thing the Doctor said was Hospice. My husband almost freaked. As I did not tryed not to let it show. Then the Doctor checked him out, said heart good and everything looked good. So even in good news some one has like put up a brick wall and we don't seam to be able to get past it. If that makes sense.

KristynRuth86's picture
KristynRuth86
Posts: 144
Joined: Aug 2010

Wow I think I would have beat up my Dr. if they reccomended hospice, then in the same visit said "na, nevermind he's fine". What a jerk!! I am so so sorry that happened to you guys. Do you mind if I ask you how ya'll found out it was Larynx cancer? I have SCC with unknown primary, but they did a scope once and said I had a nodule on my Larynx, but said that was normal. I had 2 nodules on my thyroid and they made sure to do a biopsy on that, but they came back negative. So what did they do to find out it was cancer of his Larynx?

zinniemay's picture
zinniemay
Posts: 534
Joined: Mar 2009

Greg complained of a sore throat on and off for about a year doctor saw nothing, Finally in 2009 they(ear nose throat doctor) saw something they did a biopsy, At that time the doctor said that it was too big to do surgery, So The opted to do Chemo and Radiation. I can tell you from personal experience, each person is so different No one can tell you 100% what you will feel.
My husband never sick, never smoked, never drank. #7 years we have been married. He had the radiation every day for 7 weeks Chemo once a week. He did fine not sick until the last of treatment. Then for two weeks after he was sick. He took no meds, they gave him all kinds of pills for pain he did not take them. They gave him Compazine, nope he did not take it, nothing. He had no port no tubes nothing. He lost 50 pounds but he was a big guy. When I found out what he would have to go threw I made sure eat kept eating so he would have the weight to spare. (Right thing I don't know). He did great but Dec 2009 they saw something on his Nodules the doctor said"eveyone has this" But because he had cancer they would watch it. Well they did it was and He has finished his fourth round of Chemo. This time he is taking the Compazine for stomach cramps. Now he said that when his stomach cramps it helps to eat something. That is true for him but maybe not other people. We go Sept 9 and they will do a scan to see how he is doing.
They say he is not like most people who have this type of cancer because he does not have all the things that one would have (tubes, Oxygen).
Who knows what will happen. We know right now we are together. As for the doctor he is a temp Doctor.

Greg53's picture
Greg53
Posts: 830
Joined: Apr 2010

Zinniemay,

Sounds like you're receiving good news with his tumors shrinking. Hoping for more positive results next month for you!

Greg

zinniemay's picture
zinniemay
Posts: 534
Joined: Mar 2009

Greg love the name you match my Greg and 53 , so fun is that. Greg is a great guy, stubborn as the day is long . We just keep thinking as hard as we can that things will be good. But today when that doctor walked in and said let's talk about Hospice, it threw us for a loop. And still trying to shake it off. I have to remember that the doctor was filling in and he just read some of the reports. At Ann Arbor They said that it would be like four days before they would know anything it was two days , the Doctor calls and was excited , so we are assuming that this is and will stay good news.

Thank you and everyone for your responses.

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

Zinniemay,
I am the primary caretaker of the fine fellow you are seeing on the left. He was diagnosed SCC left tonsil HPV+ in April. He is 5 weeks post treatment (surgery, radiation and chemo).
What I want to respond to is the number of feelings that seem to be going on inside of you (me too) at the same time. As the primary caregiver we are the first in line to hold them up...so we have to appear strong even when we are not. We have our overall fear "this is freakin' cancer", and we have all that comes with managing the care, so we can take that off their plate so they can focus on fighting. It all seems to come out in the form of crying. I kept my tears from Mark for months. He didn't need to see me like that...did not want him to worry or lose focus. Other feelings I have had in addition to sadness and fear, are anxiety, anger and lonliness. Oh, and lost. Oh, and guilt too. I have worried that I somehow caused Mark's cancer with the HPV factor. Even though I have never been diagnosed with HPV. Just learned today this was probably building in him over the past 10-30 years. We have only been together for 6. Whew, I can get guilt off my list.
Mark and I are defining our "new normal" now, and there are a whole lot of feelings that go along with that.
I guess I just want to validate all that you feel and all that you are going through. Cancer invades a lot more than the human body.
Let your feelings out where it is safe, and do the "hang in there" thing (was it Hal who said that?)
Come to these boards when you need to...there is great support from those who have fought and those who have stood behind them and held them while they fought...both are difficult things to do.
My Best,
Kim

zinniemay's picture
zinniemay
Posts: 534
Joined: Mar 2009

Kim,
I do come to the boards , First when I came it was the wrong board (They welcomed me anyway) Then to the caregivers and so on. I am not sure what all my feeling are, you kinda sumed them up very well. Yet other feeling I have is like you The H.V.P I am not sure I am going to ask the doctor about that next visit. But I was a smoker since I was old enought to walk,everyone in my family were and are smokers. I came from parents that smoked. My dad died of head and neck cancer in 1994 he was 77, My mother died of Conon cancer she was 88. I have five brothers one passed in 2006 of Bowell blockage. I had two sisters The oldest died of froma lung infection (casue by the hospital) Willnot go into that but of 8 children my parents had we all smoked. My brothers range from 67 to 55. My sister is 59. I quit smoking when Greg was Dx so I am sure he got it from me. The Doctor's said no but trust me I feel that way. Greg's mother died from Ovarian cancer (as my dad's mother died from) . But my heart said I did this to him.
We dated a about two years before we married in 1974 , I am the only one *Trust me I do know this for sure). That my husband has been with.
So Not only does my husband have cancer , I feel I am to blame. God could come down right now and say "No Child you did not" I would not believe even him.
This may not be the right place to talk of this but sometimes the guilt we feel. I am trying to be as open and honest with my feelings and thoughts because maybe who knows something in what I say may be like a Light blub in someones head and they will go "Oh I got it" Not to hurt or confuse anyone. Or to make them cry only that they understand how much we all suffer. I would gladly trade places with my husband .

charles55's picture
charles55
Posts: 87
Joined: Aug 2010

Speaking from a guy's point of view, even if my cancer was caused by HPV, and it came from my spouse, it just would not matter. The adventure of life is just like any other adventure: some parts are wonderful, and some parts are not. I think if any of us ponder the long path in life we took to be right here, we could see that you can change very little and still be here. Who would want to give up those wonderful moments, like those exact children/grandchildren? Granted, some things along the way were not fun, but we wouldn't want to miss even those because we wouldn't want to miss being right here. Even with the cancer. Yea, you may feel guilt. But please also feel the joy that could have only happened when you are part of the picture with him.

zinniemay's picture
zinniemay
Posts: 534
Joined: Mar 2009

I would not trade one minute of the ups and downs of my life with my husband I just wish I had made a better choice for him. It is nice to hear what you said. My husband does not blame me. I do . Thank you for understanding what I was trying to say.

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