New here.......questions about my dad

oertels6 · New User Joined: 27 Apr 2008 Posts: 9

Dad is 70 and has smoked for 60 years He has COPD, coronary artery disease, hypertension, and hypothyroidism. He has had a small stroke, and has partial paralysis from stenosis and myelopathy in his spinal column. During the diagnostic stage with the spinal issues, a small "spot" was noticed on X-ray in his lung. They followed with a CT and came back to say it looked like scar tissue.

Recently, new things have started happening. We noticed in Feb. that his feet and ankles were swelling. Like 4+pitting edema. We decreased his salt intake and that seemed to help for a little while, but within a couple weeks, the edema was back and nothing we did seemed to help. By mid March, he had gained about 15 pounds in fluid and just felt very ill. At that time, the doctor ran blood tests and discovered his Sodium levels were low (129). They said it wasnt uncommon to see that with the amount of edema he had, so they put him on Lasix.

2 weeks later, he was admitted to the hospital with hyponatremia (sodium was at 122) and breathing difficulties. Their initial thought, was that it was a cardiac issue, but they ruled that out after a heart cath. They did however notice "several nodules in the lungs" with some of the tests, so they ordered a CT (not being aware at that time of the CT a few months before due to changing doctors and hospitals).

This new CT showed..... " a noncalcified .94 mm nodule in the right upper lobe. ALso a 5.3 mm noncalcified nodule in the posterior aspect of the left upper lobe. Multiple chest wall tags are present. Thickening in the right major fissue, with associated ground glass change. There is a 1 cm calcified nodule in the right lower lobe, and multiple small mediastinal nodes are present." When I spoke with the doctor about this, he said they wanted to follow up in with a repeat CT in June.

The blood tests taken then show low sodium, low CO2, and low hematocrit.

Now, his blood tests are showing low sodium (119), low CO2, and low hematocrit, plus low red blood cells, low hemoglobin, low white blood cells and elevated platelet count, and slightly raised glucose.

He is "light headed" all the time, often short of breath, night sweats, difficulty sleeping, decreased appetite, has a chronic dry cough, his voice is very course, vision difficulties, and seems to be having a lot of bone and joint pain, especially in his right shoulder and arm.

Sorry this is so long, Im just trying to figure out what we are possibly facing here and everything I search for on the net comes back to lung cancer, small cell in particular. Does any of this sound familiar to anyone that has already dealt with lung cancer?

maryaz

Hello oertels6; Others should come and respond to you. They all have a lot more experience than I do with cancer. I do have a few comments.

Your Dad has several things going on. He really should be seen by a Cardiac Dr, and Pulmonary Dr for sure. I think some of the things could be credited to any one of a few difference problems.

Is he still smoking. For sure, if his breathing is really bad and he is still smoking, it will get nothing but worse. I am not picking on the smoking, but just trying to say it how it is. Has the issue of COPD been addressed and is his levels low enough that he needs oxygen. How severe is his COPD as that would make a different in what is happening too

If you want to learn more about COPD here is a message board you can read and use search for any subject discussed. The main page has a library or good info. Ask these people about COPD and your symptoms but keep in mind he has other problems too.
http://www.copd-international.com/COPD/forum.htm

Many people do have things show up on s-rays/scans and they wait and see as many times they are just scar tissue or something. It just depends on the whole situation. Maybe as we hear a little more, we can get a better idea.

Sorry you are having to deal with this. Have you tried to talk to the doctors about any of this. Best of luck with this and your Dad is fortunate that you care enough to check on him. Smile

_________________
Mary

Husband is 67 year old Male
NSCLC - Squamous Cell Carcinoma
Chemo and Radiation Treatments together
Allergic reactions to Taxol and Taxotere.
The Story: http://www.cancerforums.net/about9079.html

oertels6 · New User Joined: 27 Apr 2008 Posts: 9

Thank you for the response. Smile

Yes, he sees a cardiology and pulmonology. As of now anyway, they say it is not his heart causing the issues, and in fact, while it is obviously a 70 year old heart, all in all, it looks pretty good.

Unfortunately, yes, he is still smoking. Hes rather stubborn and refuses to stop. Doctor recently ordered oxygen for him, though the concentrator sits unused as of right now. He just doesnt want to use it yet I guess. For the most part, his O2 levels run in the low 90s when he is at rest still, but with walking, they will drop to the low 80s. He is on Advair and Combivent to help with the breathing.

Ive spoke to his doctors ( i think i drive the poor guys crazy with all my questions at times) but I guess i still dont understand if these nodules are noncalcified, and with his history, why they are waiting to repeat the CT or do a biopsy?

Im not sure it will matter in some ways. He has already said he will refuse treatment if it comes back that he has cancer, but as his daughter and his caregiver.....the waiting and not knowing is horrible.

maryaz

Hi,
Your Dad is fortunate at this point that his heart is pretty good. From the numbers you posted, it probably won't continue. If he stays stubborn and does not use the oxygen, then it will put a big strain on his heart trying to keep breathing. Every cigarette will make a difference in a negative way too, being he is this bad.

However, if he thinks that he can smoke because it will get him anyway, and that there is nothing can be done, he really is not right. COPD cannot be cured but it can be managed and lived with. I highly recommend now that you go read on that message board for COPD.
http://www.copd-international.com/COPD/forum.htm

The doctors can only do so much. If he won't work with them, then there is not much they can do. Do you know if your Dad every had a spirometry test. That would tell the amount of lung function he has.

If he wore the 02 (oxygen) his numbers would be higher even at rest. Maybe 02 is not the neatest thing to do but if you do want to live, I highly suggest it. Dropping into the low 80's is not good. That is why he needs the o2.

Advair and Combivent would be okay. Won't make much difference with him smoking. I am sorry to say that. I would suggest some meds that he could ask about but he doesn't seem to care a lot. Has he ever used a nebulizer at home. Are you in the USA.

If you go to the COPD site, also ask about the nodules. Many of them have had them and many on the wait and see way. I don't know the exact description of them. They did not biopsy my husband right away and he is being treated for cancer now but could have been sooner. You never know.

I fully understand the waiting and not knowing. My husband only started his treatments in February and what we went thru is like nothing I have ever experienced. Lots of waiting. I might not do the cancer treatment either if I was your Dad. If he could give up the smoking, then it could be a different story. For your own satisfaction, go over the the COPD forum and talk to them.

One other thing on the smoking issue. If your Dad is thinking 'oh well, this will kill me anyway and so I will continue to smoke'. The new news is that 'he might survive'. He could go over the edge but survive and be much worse off then, than if he quit now and did all the things he can to help himself. So many little things he can do to help himself. He could even possibly get off the o2.

Best of luck. I will be watching to see what other info you get here. Again, I am not educated enough myself on the cancer part and the tests and such you describe. Best of luck.
_________________
Mary

Husband is 67 year old Male
NSCLC - Squamous Cell Carcinoma
Chemo and Radiation Treatments together
Allergic reactions to Taxol and Taxotere.
The Story: http://www.cancerforums.net/about9079.html

oertels6 · New User Joined: 27 Apr 2008 Posts: 9

He has had the PFT tests, and his lung functions have serious decreased in the last 18 months.

As far as the him still smoking.......Please dont be sorry for anything you say. he has heard it from me AND the doctors many times. He had an aunt that died of lung cancer and she never smoked, so he is determined that the smoking is not the reason nor that it makes it worse. I can talk till Im blue, and cant change his mind.

Oh, and yes, he has a nebulizer with combivent and we do live in the USA.

I think in dads case, he really doesnt care whether the cancer gets him or not. He dreads the idea of being paralyzed totally ( which is slowly happening from the spinal stenosis and myelopathy) so I think he would almost rather die before being paralyzed. Just the idea I get from listening to him talk.

maryaz

Just for your info, had he done the right things his lung function would not have declined that fast. Once you do the right things you can often keep it where it is at. Never back to what it was but at least not worse, except for normal aging. Exception is if you get pneumonia or such.

If he really is thinking what you think, he best have a Living Will done or they may keep him alive when he doesn't want.

Lung Cancer and COPD get a real bad rap with smoking. Yes, for sure smoking is not healthy. Don't hold me to these figures but it is something like this. 80% of the people with COPD were smokers. However, only 20% of the smokers get COPD.

There are definitely issues besides smoking that causes this. Very unfortunate because it affects the research and funding for the disease in a negative way. It can be smoking but combined with other things. Smoking for sure makes COPD worse and some are just more unfortunate to have whatever else causes it.

Smoking is a story in itself. It used to be consider glamorous. Watch old movies. It is more addictive than heroin. Lot to be said about 2nd hand smoke. People point their fingers often at ones that smoke and say 'you did this to yourself'. That can apply to some other diesease too. It is so wrong.

Sorry, I am starting to get on a rant. One other comment tho. So what if he rather die sooner but it ends up being a more miserable way to go. You never know. I will have you and your Dad in my thoughts and prayers now. Best of luck. You are being a good caring daughter. I have learned to 'never say never'.

I cannot relate to the spinal stenosis and myelopathy at all. Guess it is our lives and we should be able to decide. I told my husband that with his cancer. It is his choice and no one else's BUT you have be informed first.

Good luck and I will be offline probably until tonight. Have to go out. Take care.
_________________
Mary

Husband is 67 year old Male
NSCLC - Squamous Cell Carcinoma
Chemo and Radiation Treatments together
Allergic reactions to Taxol and Taxotere.
The Story: http://www.cancerforums.net/about9079.html

brainman · Last edited by brainman on Mon Apr 28, 2008 12:26 pm; edited 1 time in total

oertels6, I am very sorry about your father's cancer and COPD. I can understand how your father's smoking can be a problem for him and for you and your mother. But you have to also be realistic and remember that he has smoked for a very long time. At his age, it would be very hard to change something that he has grown so accustomed to... to say nothing of being addicted to.

My father died of cancer but he also had a heart condition that was only aggravated by his excessive (in his docotor's, my mother's, and my opinions) use of salt and cholesterol intake and lack of exercise. For many years my mother tried to make him change his diet. After her death, I took on that "project". Both of us were almost totally unsuccessful. We did get him to use 2% rather than whole milk but that was about it. At some point we just gave up realizing that Dad had the right to make that decision for himself. In the end, Dad died a happy and content man with no or few regrets. I am sure that with a change of life-style he might have lived a few more months and been able to see my first grandchild. But we could always continue that for a very long time.

I am sure he understood that we were only concerned about his health but that we respected his right to make that decision for himself. It is not easy for us caregivers to decide when to just let go of that decision. Obviously, the young the person the more is at stake. Be loving to your father.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

oertels6 · New User Joined: 27 Apr 2008 Posts: 9

Thank you for the thoughtful reply.

I am a HUGE believer in "quality over quantity". Meaning i would rather he had a few pleasant months, than several miserable ones. ANd he feels the same way.

However, for me to make those months even remotely pleasant, it would help to know what all is wrong, and the best way to help him.

His diet is low sodium, restricted fluids, and now, it seems we will be adding low sugar. His blood sugars have risen too almost 200 over the last couple of days and we will be consulting with his doctor over this also on Wednesday. He gets no real excercise, due to the partial paralysis, and his cholesterol is also high and he doesnt try very hard to watch what hes eating as far as that goes( though with medication, it has gotten better. I could control his diet more than I do, but when he insists he wants a certain meal, I dont deny him.

That being said.....I do not force him to adhere to all of it. I remind him certain foods are not good for him, and most times he follows what I say. Once in awhile, he just eats what he wants, regardless of whether he shuld have it or not. At this point, for the most part, I dont think that will cause too many MORE issues....and his doctor agrees. Sometimes its tough to understand how he cares about what he eats, but not about what he puts in his lungs. I think at this point, he figures it wont make much difference, and as you said, its horribly addictive and hard to stop.

I guess at this point, while I would rather he quit, I wont try to force him to stop. The damage is done, and while we could extend his life for a few months, its not going to make that much difference.

His mind is still pretty sharp, so at this time, I explain the options and let him make his choice. And we have talked extensively about what I should do when he can no longer make those choices.

At this time, I am his only caregiver. There are ten kids total, and I am the only one close enough or willing to do anything. He and my mother are divorced, so its just me. At times I wonder how others in the same situation do it. He can be very demanding and has VERY old school ways and thoughts. So taking care of him and my children (I am a widowed mother) can certainly be challenging at times. We have recently managed to get a home aid two days a week for a couple hours, and a home nurse checks on him once a week. That has helped ease some things, though there are many personal cares he will not allow anyone but me to do. I dont mind though, I would rather care for him myself on most things, so i KNOW he is getting the quality of care he deserves. Ive worked in nursing homes for many many years, and just cant deal with the idea of placing a family member in one.

I guess my next question would be.....

While I know certain cancers can cause hyponatremia and anemia....has anone heard of it causing or aggravating diabetes?

And i want to stress, we do not have a diagnosis of cancer yet, but we are suspicious and will be doing a repeat CT and follow up with biopsy if indicated. I should also mention, we have a family history of neurofibromatosis type 2. My brother passed away from complications of NF, my sister and I are both considered "carriers" and my youngest daughter has been diagnosed with it. If anyone is familiar with NF type 2, could this be related to that?

brainman

Some cancer can have an impact on sugar levels either in and of themselves or by metastasizing to the Pancreas. I recommend that he ask his medical team about this. A PET Scan should show any metastatic tumors.

For the life of me, I cannot figure out what NF is Embarassed

. Probable should know it already. Sick mind of mine, I guess. Smile

_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

oertels6 · New User Joined: 27 Apr 2008 Posts: 9

NF is Neurofibromatosis ( most people recognize it when its referred to as the "Elephantitis"....the disease associated with John Merrick, The Elephant Man

maryaz

Jim, Do you ever refer to the National Cancer Institute. I have gotten a lot of information from them. They even have free books on cancer subjects. I had assumed that the people that have been here for a while just go there. That was where I looked this up before it was posted about NF.

Someone my son knew lent him a book on Chemo Therapy for my husband to read and that was how we found the site.

http://www.cancer.gov/Templates/db_alpha.aspx?CdrID=256540

oertels6, Best of luck to you with all you have on your plate. So much to live with.
_________________
Mary

Husband is 67 year old Male
NSCLC - Squamous Cell Carcinoma
Chemo and Radiation Treatments together
Allergic reactions to Taxol and Taxotere.
The Story: http://www.cancerforums.net/about9079.html

brainman

Oh, yes Mary... cancer.gov is the first place I look when I want to get info on a cancer. I am one of those that actually reads the information intended for medical professionals as well as the information for the general public. It is a great starting point although it does not go into many specifics about current chemotherapy agents used.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

pbj11 · Site Admin Joined: 12 May 2007 Posts: 1142

Oertels,

I am sorry about this convoluted mess your Dad is going through. I too question why they are dilly-dallying with following up on non-calcified nodules, especially with him having night sweats and dry cough. Those were two of the signals that something was wrong with my husband before the shortness of breath, weight loss, and coughing up bloody sputum happened. I'd be all over them too if I were you -- never make apologies for being a strong advocate for a loved one. You are doing the right thing.

As for smoking, I think the others have given you plenty of insight, so I won't be redundant. If he ends up with later stage lc and doesn't have the drive to fight because of his other health issues, it won't make much of a difference if he quits now. My husband quit smoking decades before diagnosis and it sure didn't help him a bit in the end. (I'm not advocating smoking -- so please don't anyone take this the wrong way. Smile

)

I hope they are able to control the edema and get his sodium under control so he's more comfortable.

Bless you for being a good daughter who cares.

PBJ
_________________
Husband diagnosed with NSCLC Stage IV. (Non-Small Cell Lung Cancer) Fought & lived 2 1/2 years with multiple lines of treatment.

Post describing our battle: http://cancerforums.net/viewtopic.php?t=7026&postdays=0&postorder=asc&start=0

maryaz

Hi Jim, I would have been surprised if you had not been to the cancer site. I consider you the 'in house expert' here, along with pbj. Laughing

PBJ, I understand your smoking post fully.

Oertels, I hope that it helps some knowing you can come here and ask questions. Take care yourself too. Best of luck.
_________________
Mary

Husband is 67 year old Male
NSCLC - Squamous Cell Carcinoma
Chemo and Radiation Treatments together
Allergic reactions to Taxol and Taxotere.
The Story: http://www.cancerforums.net/about9079.html

oertels6 · New User Joined: 27 Apr 2008 Posts: 9

It helps immensely to be able to talk to others about these things, my worries, fears, and doubts....and small accomplishments when they happen. I think sometimes friends and even family members dont like to talk about it much.

Thanks so much for your help Smile

I am sure ill be here often Smile

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