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ontheedge
Posts: 6
Joined: Jul 2010

This is my first discussion group experience. I was at a loss and needed to talk to people who had been there.

My husband is 53 years old and was diagnosed with stage 4 small cell lung cancer 19 months ago. He was told it was terminal and they could give him some time, but he would not be cured. He survived the first round of chemo and brain irradiation and was in remission for about 6 months. About 4 months ago, he was told he was out of remission. He began the second round of chemo and had two treatments before deciding he had had enough. The doctor agreed that the chemo was never for cure, but to give him some quality of life, which he was no longer having with the chemo. He is getting weaker every day, and now refuses to go to his oncologist because he feels so bad. The treatments he gets when he does go keep him feeling pretty good for a few days and then he starts feeling bad again. He is very weak and sick to his stomach most of the time, even with medication.

I don't know what to expect -- is his time near? HELP!

robluecrafts
Posts: 3
Joined: Jul 2010

Wow, reading your message was as if I wrote it. I just signed up today after spending 2 days crying my eyes out. My husband was diagnosed in December, right before christmas, ya. He has inoperable lung cancer and has doen his chemo, radiation and not much more can be done as the tumor is growing into his bronchial tube causing a LOT of coughing and mucous production.

I don't have an answer for you other than it really is never to early to get Hospice involved. Hospice does not mean all hope is gone, they are another resource that will advocate for your husband AND you. I have been leaning to getting them involved but my shusband for the most part is still active and has not stated he wants to give up.

ontheedge
Posts: 6
Joined: Jul 2010

Sounds like our stories are quite similar. My husband was diagnosed just before Christmas 2008. Christmas was not the same that year or last year. His is inoperable as well. The largest tumor is between the the two lobes of his lungs and has matastisized to his liver and lymph nodes. They are now concerned that it has gotten into the brain, although he is choosing to not have a brain scan at this point.

Several of my friends have mentioned hospice as well. It may be time.

Thanks for the response. I need all the input I can get.

stayingcalm's picture
stayingcalm
Posts: 656
Joined: Feb 2007

OntheEdge,
Well, here I go putting my two cents in again, sounding like I'm on the payroll at Genentech. I just wonder if something like Tarceva might be easier on him than an IV chemo. You may have heard people say you have to test positive for the EGFR mutation for it to work, but there are many of us who test negative, and it works anyway. Ask his oncologist! Tarceva has milder side effects than most chemos, and he might tolerate it better.
Luck be with you,
Deb

HOLDER13's picture
HOLDER13
Posts: 1
Joined: Jul 2010

It kind of sounds like your husband has chosen to give it up. Please do not let Him do this. Go to his doctor with him and see what can be worked out. I beat it once 11 years ago and I am going to beat it again no matter how sick I get. My chemotherapy doctor said they find something new almost every day. GOOD LUCK TO You and Your Husband.

ontheedge
Posts: 6
Joined: Jul 2010

Thanks for the encouragement. I always go with him to his doctor appontments and always have. It is pretty hard when all the doctors keep telling him they cannot cure him but they can help him feel better for right now. The cancer was stage 4 when he was diagnosed and was not completely eradicated with the chemo either time. He has been fighting it for about 19 months now and is getting pretty tired. Thanks.

MrBeck
Posts: 3
Joined: Jul 2010

don't give up... I have had 3.5 yrs of chemo with the first full 18 months of radical! There are all kinds of drugs now... Avastin was a great help to me. Don't be afraid to get another oncolo's opinion! Prayer does work miracles.

Get some BIG TIME pain meds in him (he'll feel a little better with the chemo). My oncolo was smart enough to bring out the good stuff right away so I didn't hurt so much. That helps "keep your chin up" a little more. I take (and still take) morphine and oxycodone several times a day... my doc says "no extra points for being a pain hero, if it can help then take it!". I hope this helps your husband.

Tell ->HIM<- KEEP GOING, I made it thru and he can too!

Tell ->YOU<- there is help out here for YOU too... just ask, you'll be amazed how many people will "come running!"

God Bless

KWeiser's picture
KWeiser
Posts: 16
Joined: Jul 2010

I am 32 an have adenocarcinoma of unknown primary. I am also a hospice social worker, currently not working and on disability. I was diagnosed in October 2009. I would think that your doctors would tell you if it's time for hospice to be called in. Remember that you can have hospice involved as little or as much as you want. You can always decline some of the services they offer if you are not comfortable with them. And if you don't like your nurse or nurse's aide, ask for another one. I am not saying that your husband should give up and call hospice, I just want you to know that if you come to that point, they can make things a lot easier on you guys. Please feel free to email me at kmcantrell55@gmail.com if you want to chat in private. Also, I am a member of the Caring Bridge website and it has brought me much comfort, joy, encourage, and inspiration. Feel free to check read my diagnosis story and some of the comments that have lifted me up during my toughest times, caringbridge.org/visit/kellycantrellweiser
Will be praying for you, your husband, and family!

ontheedge
Posts: 6
Joined: Jul 2010

Thanks for the posting. I did finally call hospice in two weeks ago and they have been a great help. For now, we are only having a nurse come to the house once a week; she takes his PT/INR so I don't have to drag him into the clinic every Friday. That alone was a big help. She has also worked with the doctor to figure out what meds are best and which ones he can stop taking at this point. We have been visited by a hospice social worker and a chaplain. My biggest problem at this point is his stubborness; he refuses to let me help him a lot of the time and has taken a couple of pretty good tumbles (with minor injuries so far).
Thank you for your prayers and you have mine as well.

bubbliemrs
Posts: 7
Joined: Jul 2010

I know how difficult and painful it is to care for a loved one with lung cancer and brain metastasis. My mom had the same thing. My mom overestimated her physical ability so she fell often too. I had to keep a close eye on my mom all the time. I assisted her when she lost balance. So my suggestion is to just keep a close eye on him and be ready to jump in when he needs it.

ontheedge
Posts: 6
Joined: Jul 2010

Thanks for your response. I have been jumping and running quite a lot lately. The biggest problem is that he is very stubborn and refuses to admit that he is so weak and wants to do it himself. I know that the stubborness is probably a big reason he has made it this long, but it is very frustrating and painful for me to watch him trying to be so independent when he just can't do it. Thanks for the understanding.

ontheedge
Posts: 6
Joined: Jul 2010

After 20 months of fighting this terrible disease, my husband lost the battle yesterday. He went peacefully surrounded by family and friends. I have been amazed at the amount of support I have received during this heartbreaking time. I am much relieved to know that he is now in a better place and doesn't have to be in pain or be sick anymore.

All of the encouraging words I received on this discussion board have been helpful as well. Now it is time to pick up the pieces and move on with my life as he asked me to do. His main concern was for me right up to the end. He will be greatly missed by many, many people.

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

I am saddened to hear that your husband has lost his battle. My heart goes out to you and your family.

Take care and stay strong,
Glenna

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