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Help! I need to Understand

Shiloah29
Posts: 17
Joined: May 2011

To make a long story short..my husband had the lower lobe of his right lung removed. No cancer anywhere else. Swollen lymph nodes, so 4 mo. of chemo them PET scan shows three hot spots. One on his neck, one on his 5th rib and lower back muscle. Did radiation on neck and they said we could try another chemo drug. So we go today for the B-12 shot that is needed before starting the Alimta next week. Well, the dr. kept talking like he didn't think it would do any good and if we didn't want to do more chemo it was ok, if we wanted to just do Hospice care and not go on with chemo he would understand. Having quality over time etc. Is he just trying to cover his butt, if it doesn't work??? Does he just want to send us home and wait to see how long you can live. He didn't want to give false hope etc...what the heck. I say give it all you've got and if it works ok. If not at least you tried...I just don't understand since it is not in any vital organ. Please tell me what you think. I am trying to believe that he is just trying to cover his bases.

luz del lago's picture
luz del lago
Posts: 452
Joined: Jul 2010

Shiloah, I am so sorry that you and your husband are going through this. How is he feeling, you don't mention. Is he in any pain or discomfort? If he is, I hope that his medical team is aware and have given him medication for this.

You know, the one thing I learned through my beloved's husband fight with lung cancer was: Everyone is different, where the cancer is found, when it is found, how they tolerate treatments, so on and so forth... And even if a course of treatment is effective for a time, it can come back. From your post it appears that sadly the cancer has metastized. That, too, brings another set of actions. For some, there are trials that they may qualify for, others are offered palliative care. Which by the way, statistics show that there are many survivors whose lives are extended by such care. Hospice is a facet of palliative care.

In my loving husband's case, he was prepared and scheduled for a "third line" treatment days before he turned for the worst. So you see, just like if your labs aren't right, many things can change a pre-scheduled treatment, minutes before it is about to be administered.

How does your husband feel about all of this? My beloved would say that he would take chemo to his last breath! I said I would stand by him whatever he wanted. I just wished and prayed for his comfort and peace.

I will keep you in my thoughts. Please let us know how you both are doing.

Blessings,

Lucy

Ex_Rock_n_Roller's picture
Ex_Rock_n_Roller
Posts: 281
Joined: Mar 2011

Based on what you've described, I didn't hear the doc telling you anything unreasonable. The cancer may not be in any vital organ, but it has already established itself in three new locations beyond the lung. At some point, the guy has to talk from the stats, based on similar cases he's seen and read about, and it sounds like that's what he's doing.

When I was about 2/3 of the way through my radio and chemo last year, I was worried I wasn't going to be able to finish up both chemo agents because my white cells were getting pretty close to lower than you need them to be. At the time, my nurse navigator, in the presence of the oncodoc, told me that the radiation did all the heavy lifting anyway, and the chemo just increased your odds of success a tad. In the event, I was able to finish the whole deal, and so far have a clean year under my belt (knock wood and whistle), but there was no guarantee.

The doc is aware of the possible outcomes, and he knows chemo could tear somebody up. I just hear him assuring you that it's a personal choice, and you don't necessarily have to feel you did the wrong thing by opting for quality of life and comfort care as nature takes its course. He doesn't have to cover his butt, because whether or not the treatment works is more or less out of his control, and I definitely wouldn't begin to believe he's running some kind of an end-of-life experiment on you.

There's no easy answer, and there are a lot of us "beatin' the odds so far" folks who wonder what we'll do when and if we're put in that situation. I'm guessing I'd try something if it came to that, but only because I weathered my previous dual chemo stint pretty easily.

All the best to you, whatever you choose.

ldoman
Posts: 9
Joined: May 2011

Hi,
Sorry for your husband's condition. I was diagnosed with NSCLC, non operable. It took 2 weeks of tests before I was diagnosed. I went home after my diagnosis and said to myself. I will fight this, and I started blending and juicing veggie and fruits. My oncologist started me on Tarceva pill and had been taking it since. My last CTC scan was a remarkable improvement. So tell your husband to have a positive attitude, have a good nutrition and rest well. He needs a lot of rest and nutrition and lots of prayers. Believe in god,miracles can happen. I have a prayer for cancer patients, let me know email me if you like a copy. God bless!
Lorna

catcon49's picture
catcon49
Posts: 398
Joined: Aug 2008

Are u grtting all thr right info from doc. what stage was the cancer? Was it in the swollen lymph nodes? I had lower right lobe remove 09/08. No Chemo necessary. No spread to anywhere else. I don't understand why he is talking Hospice. I am doing very well. Maybe you would like a second opinion.

c

Shiloah29
Posts: 17
Joined: May 2011

Lorna, I would love to have your cancer prayer. I have tryed to find your email on this site to no advail. You should have no trouble finding me, I hope. If you read this email your prayer to me. Thanks

Shiloah29
Posts: 17
Joined: May 2011

Thanks all for your thoughts and info. Guess we are doing ok. I have a few more questions and thoughts I could use your input on. The radiation helped the pain my husband was having in his neck but his side and back still hurt. They put him on a 3 day patch of fentalyn( that may not be spelled right) anyway he still has some pain in those areas. We are to start more chemo this week with Alimta. My question is: Will the chemo help reduce the pain or will radiation be needed for that?? Also, do you have any suggestions on how to increase his appetite?? I am giving him megastol and can not see that it is helping. This morning for breakfast I fixed him one egg,one piece of bacon and one piece of toast. He ate half the egg,half the bacon and not quite half the toast. That's not near enough for a man. You just can't force it down him. Help

catcon49's picture
catcon49
Posts: 398
Joined: Aug 2008

Try some boost or another liquid supplement

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

Cat's comment about Boost or some other supplement is a good one: if your hub is only going to manage a small amount of nutrition, make sure it is potent nutrition, and Boost, Ensure, Muscle Milk, supplements of that sort provide lots of protein, lots of calories.

As both a head/neck and lung cancer survivor, I have had my share of issues with appetite over the last six years and would also suggest that you consider breaking away from the three meals a day habit and try more meals of smaller quantity, for example, eating five times a day or even six times, with smaller quantities.

Hope this helps.

(And it does, as a rule, get better :))!

Take care,

Joe

Shiloah29
Posts: 17
Joined: May 2011

Thanks Joe, I am trying hard to get him to eat just anything at anytime. It is hard. You can lead a horse to water but you can't make him drink.I am giving his megace for appetite and pushing the Ensure, Boost etc. It seems to be improving a little. We talked to the Dr. and decided that the patch was too much pain med. He was very confused and sleepy besides not wanting to eat. Threw those things in the trash. Going back to vicadin. We decided to go with radiation to help the pain and then do chemo later if needed. Radiation really helped with his neck pain. Think when the pain is under control his appetite with get better. I hope so. He is really weak and his legs are wobbly. If it had not been for my daughter and a wheelchair I would have not been able to handle today's Dr. visit. Went and got a walker today and plan to be more prepared next visit. Thanks again for your input. It is nice to get advise and info from people that have been in your shoes.

sleepless in jersey
Posts: 185
Joined: Feb 2011

Joes advice so true, my Mom goes through her bouts where she has no intrest on eating and dropped some weight. I told the Onc at her visit how shes eating and Onc scolded her a bit. Mom tried to explaine that when you have a constant full belly how could you want to put food in your mouth?
Onc than said the same as Joe have 5 to 6 little snacks a day not just 3 meals a day.
Were here for you :)

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