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New here and newly diagnosed with NSCLC Stage IV with adenocarcinoma and mets

KLScoville's picture
KLScoville
Posts: 161
Joined: Mar 2011

Hello,

My husband was diagnosised with stage IV NSCLC with adenocarcinoma and mets on (officially) March 3, 2011. He started off with real bad back pain, side pain, took two extra strenght bufferin and was off for the day no problems. Until Superbowl night the pain became so intense we ended up in the hospital. To make a long story short he has a large tumor in his abdomen pressing against his spine (inoperable) and one in his jaw (he had a tooth extracted in January that got infected and never healed properly) exposed and also inoperable being so close to the juggeler vein. Before his back pain he didn't weight much being a tall lean man, a whopping 145 LBS. Just got weighed yesterday and he is at 124.5 LBS.

Since his dx, he has had 5 or 6 radiation treatments and not doing so well with those.

I had a really long letter that I did previously but forgot to submit it. I am at work now so I will have to re-write it later.

I am just looking to spill my guts about his dx and this website seems to be very supportive and caring.

Thanks for listening and again I will write the letter again later.
Kelly

Glenna M's picture
Glenna M
Posts: 1576
Joined: May 2009

You have come to the right place for support, encouragement and advice.

Is your husband receiving chemo also or just radiation?

Please stay strong and keep us posted...we care!!

My best to you and your husband,
Glenna

KLScoville's picture
KLScoville
Posts: 161
Joined: Mar 2011

he is receiving only radiation, please see replies below for the info. Gotta get to work, thanks!! Kelly

lekkerone
Posts: 199
Joined: Jan 2011

Yes, you have come to the right place for support. Does his doctor have a plan B? Perhaps Boost or Ensure would help with his weight. My best to both of you. Diane

KLScoville's picture
KLScoville
Posts: 161
Joined: Mar 2011

My husband is drinking the "diabetic" version of boost and ensure since he is having a hard time eating. Soup has been his choice for dinner lately and that doesn't taste good because of the exposed tumor in his mouth and the radiation that he is receiving on his neck/jaw. Doc is trying to shrink the tumor with radiation so it doesn't keep eating away at his jaw bone. No plan B, but his oncologist is trying to talk him into doing chemo even though he isn't handling the radiation too well. We see the oncologist on the 7th of April. Mark will probably say no again to chemo but we shall see. Thanks for replying! Kelly

grannysb
Posts: 21
Joined: Dec 2010

Please continue to come back here often for support and care offered by so many here.

KLScoville's picture
KLScoville
Posts: 161
Joined: Mar 2011

sorry that I didn't write more last night, had to pay bills. Mark (hubby) is the financial person in our household (that I don't mind one bit) but now I have to take over and make sure we don't lose anything like electric, phone, insurance etc. So I am basically playing accountant lately.

Mark is only receiving palliative radiation treatment. Does not want chemo. Is on two morphines. Hydromophone for quick relief and ER morphine for the tumor that is pressing against his spine (in his abdomen). That one is unfortunately inoperable and he has one in his glands in his neck by the jugguler vein that is getting radiation also (also inoperable). The rad oncologist is trying to get his pain under control because he stated on Tuesday that "I've seen your ct scan, PET scan and x-rays and you are in some serious pain" Obviously it has metatisized throughout his lymphonic (sp?) system as the oncologist told us. Mark was worried that he would get more pain meds because of the addicts and drug dealers but his worries were satisfied when the doctor perscribed him more pain meds and told him that statement on tuesday.

We have good days (few-very few) and bad days. The good days consist of him actually sitting up on the couch. Bad days...well that is self explanitory from seeing the good days. Unfortunately he has an exposed tumor also in his mouth from an extracted tooth that never healed and it also has radiated a very bad odor that is all over his body. He has that "sick man smell" and has had it for a while. Not a pleasant aroma but I have always told him, I don't care what you smell like, I love you with all my heart and I am going to do the best I can to help you be as comfortable as possible. I use to work as a HHA and with hospice as a nurses aid so you can say I have been there but not with anyone this close to me. At times it does get to me but not too often because like you all said. I have to stay strong.

Thanks for listening again. I have to get work done to wrap up the week. (yes I am still trying to work full-time, 50 hours a week) Kelly

lekkerone
Posts: 199
Joined: Jan 2011

Your plate is full and my heart goes out to you. Do you have family or friends who can spell you off for awhile? Someone you can talk to? It's pretty hard I am sure to stay strong with such a heavy heart and heavy load. Bless you Kelly. I hope tomorrow is one of those good days....Diane

KLScoville's picture
KLScoville
Posts: 161
Joined: Mar 2011

Thanks Diane,

I hope tomorrow is a good day too, today isn't such a good day. Poor Mark has been constipated for the past 4 days. Got him what the doc office suggested and he took it. Help a bit but he hasn't had a bite to eat at all today. Which wouldn't worry me so much if he wasn't a diabetic but he is. Hasn't taken any of his insulin at all today. He stated he was too "backed up" to even try to eat. Living off of the pain pills today which aren't helping until he finally had a small bm.

Gonna call the doc on Monday at let him know what's up with having still no pain relief. I hate to see him be in such awful pain.

I do have friends but Mark is a very private person. I also have my daughter who helps me when I ask, which isn't too often. Mark has a brother in Ohio and he came down a couple of weekends ago and is planning another trip in April with his wife. Also our poker buddies are all ready "on-call" when need be. My mom is in upstate ny and plans on coming down but she better not come alone driving being she is 77 and just had heart surgery in 2008. But like I said Mark is a private and stubborn person. I always "run" people by him before they come over to visit so he can have a say if they come or not. It is all his decision.

Thanks for listening! Kelly

Rosi's picture
Rosi
Posts: 69
Joined: Dec 2009

Kelly; Trust God he will help you carry your cross, I am praying for you!
Romé

KLScoville's picture
KLScoville
Posts: 161
Joined: Mar 2011

You are right! I do trust in God and I know that is what is keeping me strong.

Thanks ~Kelly

Tina Blondek's picture
Tina Blondek
Posts: 1566
Joined: Nov 2009

Hello Kelly and welcome to you and your husband. I have just read your story and wanted to let you know I will be thinking of you and praying for you both. I was a caregiver for my dad. I so know that dying man smell that you speak of. My dad passed a year ago March 9 from esophageal cancer. Keep up the good work, make sure you take care of yourself, and ask for help!!! Peace be with you both. Keep in touch.
Tina in Va

KLScoville's picture
KLScoville
Posts: 161
Joined: Mar 2011

Hello Tina,

Thanks for the message. Mark is currently in the hospital at first for DKA and now he has thrush in his mouth and they are treating that with antifungal medication. I hope he comes home soon. The house is so dark and quiet without him. He said that he will be doing at least 5 more radiation treatments and then he requested to go to hospice. Well first he requested that and I asked him to do at least 5 more treatments because they are shrinking the tumors very very slowly. I am staying strong and taking care of myself along with him. I don't need to get knocked down either whether it be a cold or exhaustion.

Thanks for listening ~Kelly

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