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Cough - update

Dawn50
Posts: 115
Joined: Sep 2011

On Nov. 22 we learned that my husband's sister has AML Leukemia. She immediately started chemotherapy on a 24 hour per day seven day regimen. How much more can one family be burdened with? Next month my husband has his follow up PET scan to advise what is happening since the end of his treatments.

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

I'm no doctor but if he is running a low grade fever and coughing up green stuff I would say he has an infection of some type, possibly the pneumonia isn't completely gone. This is NOT something you want to mess around with, any type of infection is quite dangerous to people who are on or just completed chemo. His immune system is still compromised and he needs to see his doctor ASAP.

Unfortunately I know what I'm talking about, my chemo for a recurrence and possible mets has been postponed because I have some type of infection (possibly pneumonia) in my right lung and the doctors told me they are glad they didn't start chemo when scheduled because they could have made my situation much worse.

Please, convince him to see his doctor, I know he hates taking meds and probably hates being sick but he went through the h#ll of having chemo and rads and now is not the time to stop fighting.

My best to both of you and please post so we know how you both are doing.
Glenna

AlanRinHBG
Posts: 120
Joined: May 2011

He just finished chemo and 40 rads. It takes a while to heal from that invasion.
He's taking benadryl, lidacaine, and percacet and you wonder why he's getting dizzy?
He's spitting up green stuff and still working and overtime?
He should be at his drs. office and at home in his jammies.
It can take a long time to recover from that kind of treatment.
His weight loss is from not eating because his throat is so sore.
Ask his dr. about healthy protein shakes and other things he can handle.
I'm with Glenna on this as well as the rest of us I'm sure.

Christmas mouse
Posts: 4
Joined: Oct 2011

Hi dawn
My cough is the main sign to tell me how active my tumors are. Needless to say only if I knew that 3yrs ago, the story wouldn't be the same.
After several chemo treatments, my disease was reduced 50%, as soon as my dr put me on maintenance chemo, I was coughing so hard and we found out that everything was bad again. This time, my dr. Put my chemo on hold for 5 wks during my radiation treatments and I'm coughing again like crazy.
Your husband may not be paying attention to signs of his illness, you can try.
Another thing about work, does he have life ins from his job ? Your job ? Or any other places ? Go back and read the advance benefit chapter. This is how I can afford not to work anymore.

Dawn50
Posts: 115
Joined: Sep 2011

There is so much information about the cough. One place tells you it's a symptom of lung cancer and another tells you it's reaction from the radiation, another tells you it's because of the chemo. I also read that lung cancer and the treatments make you more reactive to allergens. It's hard to know what to believe. The doctor put him on steroid and antibiotic but they don't seem to be helping at all; course he hasn't been on them that long either (about 3 days). Part of the cough could be from working in a very dusty environment since we have had no rain lately.

I have offered different options that would enable him not to work and just focus on fighting this disease he refuses. He likes his job and wants to work. He wants to feel productive. He says if he stays active he keeps his strength up instead of sleeping all the time like he does if he isn't moving (part of the sleeping is needing rest but I think part of it is depression too)

I have noticed many people on here comment about maintaince chemo but the dr says there is no need for future chemo treatments. I'm not sure why unless he feels its a lost cause? My Dad died of lung cancer and I'm not seeing anything "new" being done for my husband other than he took chemo and my Dad didn't. I have tried to tell my husband he should go to a different dr for another opinion on his treatment but he says no - he says everyone who has looked at him from the ER the first night to the oncologist and radiologist have all agreed it's lung cancer and that radiation and chemo are the only and best treatments since it's inoperable. At first he was refusing to take any treatment so I guess I should feel lucky that he has done as much as he has.

I wish there was more that I could do for him but it is his choice, his life. I am doing the best I can to support his decisions. It's hard.

I do appreciate everyone's comments and suggestions.

Dawn50
Posts: 115
Joined: Sep 2011

He finished the course of steroids and antibiotics and he is still coughing. Today we went on a road trip to get us both out of the house for a while. It was a short trip but did have some walking involved. It wore him out completely! He didn't complain about his legs at all but did complain that his arms ached. The more we walked the more they ached. Odd. When we got back to the car he fell asleep immediately and slept most of the way home.

He continues to work; some days getting 12 hours in. He is very bullheaded about missing any work. He has only worked there for about 3 or 4 months before getting his diagnosis. Before this job he had lost his job in a factory where he had worked for almost 30 years, he went to school to be an electician and the housing market hit bottom, so he went back to school and got his CDL and was an over the road trucker for two and a half years. I thank my lucky stars and his every day that he found a job at home so we could find the cancer before it was stage 4 or we found him dead in his truck some where. He doesn't want to lose his current job, he likes it and he likes his boss and co-workers.

He struggled for a couple of weeks deciding if he wanted to take the radiation and chemo or just let nature run it's course. I pushed him to take them and now, having watched him suffer through the treatments I feel guilty because he did it for me. When he isn't feeling good, he still can't eat some foods due to them causing pain when it gets about half way down his esophagus, or he can't enjoy a day trip because of exhaustion I feel like I should be going through it for him. My heart is breaking.

Cancer is so hard on the patient but also on their family.

rocket baby's picture
rocket baby
Posts: 22
Joined: Sep 2010

Hi Dawn,
I completely understand what you are going through. It's so hard to watch a loved one go through this and sometimes you just feel so darn lonely. My husband was dx'd in 2007 with stage 3 lung cancer. The coughing was brutal. After radiation and chemo the tumor had shrunk and was no longer growing. The problem is now he's coughing again like crazy, has joint pain, muscle aches and is tired all the time. I know it's back. He hasn't coughed like this since he was first diagnosed. Like you, I have let him make his own decisions. He has an onco appt. on Nov.25th, and I don't think he's going to go to the doc before then. I think he knows what he is up against. It's difficult when you have a strong willed patient, but when so much has already been taken from them they should at least be able to make their own decisions about their healthcare.

Maybe he wants to keep working because it makes him feel like he's contributing. This is major thing with my husband, but he has so many other issues (can barely walk to the mailbox) that there is no way that he could work. So, we suck it up and do what needs to be done.

I'm sending some positive energy your way.....remember we're all in this together.

(((((((HUGS)))))) Michele

Dawn50
Posts: 115
Joined: Sep 2011

Your post gives me hope, just reading that your husband was diagnosed in 2007 and he is still with you today. It means a lot.
My husband goes for his first recall appointment with the radiologist tomorrow afternoon. He seems more forthcoming with information that his oncologist. I'm hoping we learn more.

Dawn50
Posts: 115
Joined: Sep 2011

Had an appointment with the radiologist yesterday. He showed us comparisons of the scans my husband has had. The first one from June 10, 2011, the next from the PET scan June 29, the last one taken after treatment on October 7. The tumor had enlarged by quite a bit from June 10th to June 29th. The radiologist said had he not discovered the tumor he most likely would have had a collapsed lung, pneumonia, and most likely would have died within 2 weeks to a month. The only way I can describe the size of the tumor as of June 29 was like the size of a new roll of toilet paper when looking at the end with the roll hole and it was right between the lungs and pressing on the opening to the right lung. The after treatment scan on October 7th showed significant shrinkage - the tumor (or scar tissue?) is now about the size of the toilet paper roll hole or a large grapefruit to a clementine? The radiologist seemed very "proud" of his work. With the shrinkage came more open, but not "normal", airways into the lungs and we won't know much more until the PET scan in December.

When my husband first met with the radiologist and the oncologist they asked what do you hope to accomplish from this? His reply was "aside from living, I want to stop coughing" So one of the first questions my husband asked was, "So, when am I going to stop coughing?" the response, "I don't think you will ever stop coughing because the cancer is irritating the lining of your lungs." We looked at each other like WHAT???? There has been no mention of cancer in the lining of his lungs only at the mediastinal lymph nodes between the lungs and there was no sign of cancer in the lung at the first PET scan. The doctor said he would put him on straight codeine or morphine to help with the coughing so he could get sleep....addictive medications for a cough??? This isn't sounding right.

The doctor then started feeling his neck, arm pits, stomach, etc. He kept going back to his neck and chest area and finally asked him if he had been having headaches and my husband said yes he had probably more than usual which got a HMMMmmmm.

I'm not sure we are being told everything. Of course we aren't stupid we can read the internet we know the prognosis isn't great but we just got the feeling that the radiologist felt like his job is "done" so he is done with us.

The conversatation left us both feeling kind of rattled to say the least. At first it seemed pretty positive and then it didn't. Now, more "wait and see"... I will say my husband has much better color than he did, he has more energy,he is awake more than he is sleeping at the end of the day, except for the cough and weight loss he seems more like his old self.

I think, from some remarks he has made, he is beginning to come to terms with the possiblity he may not always be with me. He seems to be setting things in order so I don't have to worry about them, he told me he was going to keep working as much as he can so I have money "if something happens". It's sad but I understand his need to do this - like I read in another post, "it's a man thing".

My father died from lung cancer. I had two little girls and was pregnant with his third grandchild. He died about a month before the baby was born which turned out to be his first grandson. My husband now has lung cancer and our daughter just found out that she is pregnant. We , of course will love it no matter what, but are hoping for a girl since we have five grandsons... I hope my husband is here to help spoil this grandchild, especially if it's a girl! But I have had nightmares about this since it's like watching my daughter going through the same things I did at about the same age.

I read an article where someone had asked, does cancer hurt? The reply was no, cancer doesn't hurt, but thinking of all the things you will leave behind or miss hurts like hell! I understand.

grannylove
Posts: 183
Joined: Apr 2011

I am so very sorry that you and hubby are having to experience all this. It doesn't sound as if you are getting alot of info on hubbys condition or available tx plans. I know it is hard to ask the right questions when we do not know what to ask really. I am sorry that I do not have that experience but am hoping that someone on this board who has experienced cancer at this stage themselves, can be of assistance in that dept. Know you and hubby are not alone in this struggle...this site is a wealth of knowledge and support. Have you seen the chemo oncologist or are you just dealing with a radiologist oncologist? Is your husband having any kind of further tx? Have you gotten or have you thought about a second opinion? Sometimes a new perspective can explain things so that you both will be able understand better. They are making great strides in cancer research but some docs are not up to date on availability of new tx options. I do not know where you live but hope that there is a good cancer center close by that you can contact. Stay strong and keep positive! Sending positive vibes and prayers your way.
Cheryl

Dawn50
Posts: 115
Joined: Sep 2011

We live in Iowa. He has been going to a hospital oncology in a mid sized city (the same office my dad went to). He sees a chemo oncologist and an oncology radiologist. He won't get a second opinion because he says everyone who has seen him has pretty much told him the same thing - our journey began at the ER in a small town. They did a chest x-ray and a CT and immediately referred him to a pulmonologist who did the biopsy and referred him to the oncologist who referred him to the radiologist. He has had the "gold standard" of care according to these doctors.

Since he wants to keep working he refuses to travel to the Mayo clinic or elsewhere and he is concerned our insurance won't cover it and we can't afford to pay for it.

This is very hard for me with the memories of all that my dad went through... I can only imagine what he is going through. He has said many times that he doesn't want to die ( no one does!) but he doesn't think cancer ever really goes away. I keep telling him that he has to keep a positive attitude and hang on to the fight he has because some times that is all the keeps people going!

Dawn50
Posts: 115
Joined: Sep 2011

We are getting rain mixed with snow and my husband works outside part of his day. He has been running a low grade temp (99 - 100) off and on. After working out in the cold and rain all day he came home and said he felt pretty crappy all day and couldn't get warm. Chemo and Radiation ended around 2 mths give or take ago, should he still be having a low grade temp?

I was listening to him talk to his mom about what the doctor told him at the last visit. It was a lot more positive than what was really said. After she left I said that he and I must have been at different doctor appointments because I didn't him say some of those things and he got this ornery look in his eye and said "well it's not my fault you aren't hearing what I want to hear!" We both had to laugh at that! That one comment says a lot.

Dawn50
Posts: 115
Joined: Sep 2011

I tried to get some information on my dad's cancer - I thought maybe it would help me put my husband's cacner into perspective but all I got back was a HIPAA form and a letter saying the patient would need to complete the form to authorize me to have the info - HELLOOOOO, he died 25 yrs ago and I pointed that out in the letter I sent! So now what?

I think I'm falling into the abyss of depression. I've been wandering around the edge for a few weeks now but at some point I slipped over the edge and realized today that I am feeling like I'm hanging on to the edge ... like nails on a chaulk board, slowly scrapeing my way down the side of the blackness I cry anytime I'm alone and I'm so angry!! Why is this happening? I put a lot of effort into not letting him know how I feel but it's hard. Then I feel guilty because HE is going through so much more than I could imagine and here I am thinking about how it affects me, how I feel, etc. I keep telling myself I need to get over this crap he needs me so I need to be put together and stong for him...

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