dehydration and edema

[michellep]

I hope someone can help me with this problem. My husband was prescribed three different diuretics.

1. Demadex 20mg

2. Zaroxlyn 2.5mg

3. Aldactone 25mg

His fluid intake is monitored at 1200cc's daily. I also measure his out-take as well and the fluid was more than the intake. He developed severe dehydration last month and was told to only take the Demadex. But he continues to develop edema in his feet, legs and right arm (cancer is right lung). I would assume because the out-take has decreased now. In observing him I notice that the more edema he has the more severe is coughing is. What can I do at this point? We haven't physically seen the oncologist for about six weeks and don't have an appt till mid July.

Thank you in advance for any assistance you can provide because I am scared half out of my mind.

(see history below)

Husband Jan 09 Bladder cancer removed

Mar09 dx pneumonia

Mar09 admit hosp pneumonia, antibiodics only

Apr09 admit hosp again pneumonia -drained lung 1500cc

Apr09 Dr called dx stage 3 w/malignant pleura

Apr09 Hosp again 911 call another 1600cc

Apr09 Body scan

Apr09 2200cc drained from lung and chest tube inserted

Apr09 Port inserted, Pluradesis completed

May09 Chemo begins Carbo/Gemzar

May09 dx congestive heart failure (mild)

June09 Blood transfusion - 2 units

June09 Tests show noticeable decrease in lung densities

[Patti B]

Michelle-

If its too bad, take him in to the ER. Better to be safe than sorry. The swelling could be caused by any number of things, i.e. legs and feet swelling could be a blood clot. You do not want to wait til Monday to try to see a doctor.

Please let us know what happens.

Hugs - Patti B.

[recce101]

Michelle:

I agree with Patti. If the swelling is getting worse, since it's the weekend, take him to the ER to get checked for a blood clot. These are not to be taken lightly!

It's unconscionable for you to be left hanging like this, with no guidance on who to contact when something critical comes up in between oncologist visits. I don't know how your particular clinic is set up, but there must be someone knowledgable you can contact when your onc is not available — an experienced nurse, or nurse practitioner, or physician assistant, at a minimum. My own onc is hard to track down, but there is a very smart oncology nurse practitioner at my clinic who knows my case, answers or returns calls promptly, and can quickly coordinate with my onc or one of his associates if necessary.

There's also Dr. West, who has answered your other questions within a few hours.

Never hesitate to be the squeaky wheel! Best wishes and Aloha,

Ned

[michellep]

Thank you for your replies. I have placed calls to the onc doc's and primary doc's exchange and hope to hear something soon. I also called the hospital ER and they said "don't worry it's normal with plueral effusion patients"......I hope I hear something VERY soon but in the meantime I have his legs elevated. I'll keep you update.

This journey is sooooooooooooo hard

[Patti B]

Michelle-

If you don't hear from the doc soon, I would still take him in to the ER. My leg was swollen and terribly red and my former onc kept looking at it and kept saying that was from the Alimta. I finally DEMANDED an ultrasound and guess what - it was a blood clot. Don't let someone from the ER diagnose it over the phone!!!

I too wondered why it is so long in between your visits with the onc - do you see a PA or someone in between those visits??????

Trust me, you MUST be proactive in your husbands care. I have always been very proactive about MY LIFE and my last onc didn't like that at all to the point that he terminated our patient-doctor relationship!!! Now I have an onc who doesn't mind me asking questions and researching things on the internet. No one takes care of you or your husband the way you do!!! Yell, scream, holler if you have to!!!!

PLEASE keep us updated!!!

Hugs - Patti B.

[michellep]

Patti,

The ER said that unless it was "hot, red with spots" that it was not anything to be concerned about but yes, I agree with you. I have not heard from the doc's yet so we are on our way to the ER as soon as I can get him ready (my son is helping him dress now).

As far as the PA yes we do see her during the chemo, but we don't feel comfortable with her. My husband has lung cancer yet she doesn't even have a stethascope (parden spelling). I know the oncologist is great but he works at two hospitals and has three offices. I know he keeps tabs on his patients via info from his staff etc but other than that he is impossible to contact. We live in a small town with only two oncologists and we have an HMO (which says a lot huh?)

Anyway, I'll be back tomorrow with an update and thanks to everyone who "cares"....it means a lot to me.

Michelle

[Barb73]

Michele,

I have nothing to add to the fine advice given by Patti and Ned, but I want you to know that I care very much about your problem.

It is so very scary when something untoward occurs and we know help is needed - but what to do about it?

Should we take the advice that "it's not anything of which to be concerned"?

Last October, Bill woke up one night with coughing and spitting up of some blood. It was frightening. He didn't want to go to the hospital, but after a bit, he was convinced to go.

I called for an ambulance because there wasn't any way I could drive. My hands were shaking and my mind was cluttered with "the unknown."

There, in the wee hours of the night, a policeman assisting the ambulance was standing in our kitchen.

I was nervous, upset, and very scared.

It was the very first time in this journey that we went to the ER. It taught me a lesson to listen to my inner instincts.

Your husband's swelling would be a case in point. My thought is that I do not care about whether, or not the ER likes it. I will out of here in a flash and going over by any means available.

Being proactive is not always easy for me (I tend to suffer a bit from white coat intimidation), but it is the thing to do for our loved ones.

Hope everything turns out well for you and your husband.

Barbara

[Patti B]

Michelle-

I am so happy that you are bringing in your husband to the ER. Better to go and leave with them saying "I told you so" than waiting and having him get sicker.

Bottom line is - if your gut tells you something is wrong, do something about it. Thats one thing I have learned having cancer. I was never one to go to the doctors and even 2 years ago when I developed pneumonia, I took my time getting to the ER. That caused a several day hospitalization.

I will be waiting to see your post tomorrow to see how he is. Will remember you both in my prayers tonight.

Hugs - Patti B.

[recce101]

I'd just like to add a bit of reinforcement to what Patti and Barbara said. It's my firm opinion that for someone with cancer, especially someone undergoing chemo, there's no such thing as overreacting to complications that develop. During my first year, there were a couple of times when I debated with myself whether it was worth calling the clinic for a "little" problem, something I'd have felt silly reporting to a doctor under normal circumstances. But each time I did, I was surprised that everyone at the clinic, from the oncologist down to the person answering the phone, took the problem very seriously. By now I've learned to trust my instincts, and I've never been given reason to think there was any overreaction on my part.

Ned

[michellep]

Hello everyone! Spent half the night in ER with my husband re: the edema. Seems like everyone in town was there last night. But, when the doc finally examined him he said that this is a common thing for plueral effusion patients even though the pluradesis had been done and was successful. He said to continue all three water pills for the next two days and if there is no improvement to call the oncologist. He did some x-rays and said that yes there was indeed some fluid in the lungs but that given time chemo would take care of all that. I don't know....I still don't feel comfortable with his answers so I will call both the oncologist and pcp again tomorrow. If they don't return my call I'll just take him into the office and demand that someone see him. I mean, I called both of them yesterday and still haven't heard back. I thought that doctors always have someone "on call" for things like this.

My husband and I always seem to run into road blocks since this thing started. I feel like I spend half my time on the phone talking between insurance companies, pharmacies and doctors offices. And they just keep pointing the finger at each other. I really resent having to do that because I have enough to deal with as it is....I'm sure many can understand that.

It saddens me especially with the insurance companies that continue to deny needed medications. My husband worked for the government for 42 years and this is what he gets?

Sorry to just keep going on....I guess I just needed to vent!

Thanks again to everyone for your continued support and well wishes!

[recce101]

Thanks for the update, Michelle. I hope you can both get some well-deserved rest and that the edema starts to resolve soon.

Ned

[Patti B]

Hi Michelle-

I have been watching for your post and am glad things seemed to work out fairly well. I am so glad you went last night - whenever that little voice inside tells you something isn't quite right its time to do something.

I think its terrible that noone has gotten back to you but hopefully tomorrow you can get in contact with your oncologist for any needed follow-up.

Please keep us posted and hope both you and your husband get a good nights sleep tonight.

Hugs - Patti B.

[SandraL]

Hi Michelle. You received great advice from Patti and Ned. And I hope you get more action today. And you just go ahead and vent. Following up on all the little things can be quite tiring but really can make a huge difference. So even if it is hard on you, know that you are doing everything possible for your husband. I hope you get some rest soon and even more that you get some attention from the medical professionals. Take care

Sandra

[michellep]

It's almost noon time and no calls from docs so I called again. Both offices answered with the exchange so I just thought that they might be at lunch. Well, turns out both docs are "out of town for a few days". I asked that the doc "on call" would get back to me. We'll see

Edema is down but not enough for me. Although he did have a good night with less coughing. It's so bad he's been wearing a wrap around back brace because his stomach muscles hurt so much.

I'm wondering if any of you know but one of the chemo nurses told me that if the cough increases after treatment that it's actually a good thing because it means the chemo is working. Also, if anyone has had gemzar/carbo, what kind of side effects did you get? Did it work well for you?

Thanks

Michelle

[Patti B]

Michelle-

I did hear somewhere that someone else was told that coughing after chemo was a good thing. However, in my case, I remember telling my first onc that I cough real bad the day after chemo and he didn't seem to know why that would be. Of course, I told him I felt like it was the chemo kicking the cancer butt and he just laughed!!!!

I have been on Carbo but not with Gemzar. You can go on chemocare.com to look up Gemzar to see side effects if you like.

I just HATE it when docs won't call back. My best friends husband has vocal chord cancer and the tumor board met about his case a week ago Friday and the doc had promised to call him last Monday. My girlfriend called 3 times and they never got a return call until the next day. I just don't understand how they can be so unfeeling. My previous onc was rude like that and I just came right out and told him that I don't get to flip off the light switch at 5 pm and go home - I live with this 24/7. Guess thats why he fired me as his patient!!!!

I hope that someone gets back to you soon - rememer the squeaky wheel gets the oil!!! Keep calling back and be persistent that you want a phone call TODAY!!!!!

I am glad, however, to hear that he had a better night and I hope that continues.

Please keep us posted.

Hugs - Patti B.

[michellep]

"Patti B"]Michelle-

My previous onc was rude like that and I just came right out and told him that I don't get to flip off the light switch at 5 pm and go home - I live with this 24/7. Guess thats why he fired me as his patient!!!!

Hugs - Patti B.

You truly made me laugh with that comment.....I'm going to use it myself just as soon as someone calls me back! Although I hope they won't fire me!

Thanks for the link....I will go there now.

[Patti B]

Michelle-

Glad I made you laugh!!!! You probably needed a giggle or two after the last couple of days. And my last onc really did fire me - came into the chemo room, threw the poor chemo nurse out and told me we were done as doctor and patient. I really didn't like him at all and if I didn't have the IV in my arm, I would have done cartwheels across the chemo room floor!! The way I feel, this is my life, my body and I WILL ask any question I want. I mean, is something a secret here about my cancer!!! So you continue to be your husbands advocate......he is so lucky to have you!!!

Hope by now someone has called you back - please let us know what they said.

Hugs - Patti B.

[Carleen]

Michelle,

I don't have much to add, just sending you my prayers and hope things improve with your hubby's edema.

I know that I was told when my husband had a lot of edema in his right arm that it was common with plueral effusion too. However when it started causing him pain and discomfort they did offer us the option to have a stent put in to one of his main veins for that side of his body. They said the problem with the pluerual effusion is that the swelling there is sometimes compresses some of the veins that actually drain fluid out of the limbs. The blood and fluid can go into the limbs easily enough, but then are trying to drain out of narrower compressed passages so it gets slowed and backed up.

It's definitely a more invasive process to insert a stent, and if he is improving slowly from the chemo I would not suggest doing that. But if he is in pain, maybe that could be an option to consider.

Sending you prayers and hugs. God Bless!

[michellep]

Thanks to all of you for your support. It's comforting to be able to chat with people who actually understand what you're going through. Only thing missing is the ability to pick up the phone and call you guys

We still have the edema but it is somewhat better. We had his lab done this morning and it looks like we'll be having another 3 units of blood in a transfusion as soon as the hospital calls with a time.

Spoke with the PA this morning about the edema and she said to just double up on the demadex (water pill) and all would be fine.

Our primary physician called last night from out of town (nice guy) he was having a few family days at the beach. He said he wanted to speak with me about my husbands prognosis. He doesn't feel my husband understands (which is possible) and wanted to suggest that we stop all treatment and call hospice. I told him about the many success stories I have read here and he said that those stories are far and few and that I need to consider whether prolonging his life while he is suffering so much is more for him or for myself. He said that lung cancer is the hardest one to fight with the fewest success stories.

I just feel that we should try a little longer because we've just barely started our journey and I don't want to just give up now. But then, I'm wondering if I'm just being selfish.

Suggestion or comments please?

[recce101]

Michelle, that can be arranged. I'm sure any of the members you've been corresponding with so far would be happy to talk with you. Click the "pm" (private message) button under one of their posts and ask.

I just feel that we should try a little longer because we've just barely started our journey and I don't want to just give up now. But then, I'm wondering if I'm just being selfish...Suggestion or comments please?

Has your husband expressed any thoughts in this area? For some people, age can have a bearing on how much discomfort they are willing to put up with for the chance of a modest increase in longevity. I don't recall seeing your husband's age, but since you mentioned insurance issues, I gather he's not yet 65 (Medicare age). Maybe he's not ready to quit either. Also, I'm not sure how much of his difficulty is the result of chemo side effects — it's possible he might feel better as the pleural effusion resolves. If you can find a way to begin such a conversation, I think you'll both find it very positive. Aloha,

Ned

[Patti B]

Michelle-

You can PM me anytime and we can talk that way. I would love to get to know you better.

As far as hospice is concerned, seems to me like the doctor would have wanted to see him first and examine him personally before he made that call. But then, I certainly am no doctor. I think its a personal matter that you and your husband have to talk about. I say most of the time that I will never, ever give up but then other times when things get tough, sometimes I begin to waiver on that.

I agree with Ned, maybe once the pleural effusion resolves, he may begin to feel better. This is a tough disease, and it really does depend on how much a person is willing to take. BUT - I disagree with your doc about success stories being few and far between - we have many here. We may not all beat it but many, many of us have long gone past our expected expiration dates and are living fairly comfortable and enjoying life.

This must be such a tough time for you both - I wil continue to hold you both in my thoughts and prayers. And don't forget, PM me if you need to talk.

Hugs - Patti B.

[michellep]

Ned,

You asked about my husband thoughts on this. I believe he is still in total denial. He doesn't discuss anything about the cancer unless it's positive things. The doctor did say to him once that without treatment it would be 4-6 months and with it he would survive 1-2 years. It was as though he didn't hear a word of it and has not discussed it since. When I speak to him it's only positive as well because I can't bare to say anything. I know the primary doctor told me to discuss all of this with him but I just can't do it. I don't think I could keep it together....it's not an option for me at this point if ever. I know his character and when he's told this he will totally just "give up" and that's the last thing I want to happen.

You asked about his age and he is 75 years old but Blue Cross is his primary and Medicare is secondary. Medicare will only come in when hospice is called.

Patti,

Thanks for the PM offer. I will contact you as soon as I get a chance.

The doctor that mentioned hospice has seen him on a regular basis. It's just that based on the medical professionals 30 year study of lung cancer he personally see's no-hope. But it's like I told him, how can you base anything on a lousy 30 year study when cancer treatment has come such a long way in 30 years.

As far as the pleural effusion improving, how long does that take? He has the pluradesis done about 6 weeks ago.

I'll be taking him in again on Thursday for another 3 units of blood. I hope he feels better by the week end. It would mean the world to me just to sit in the back yard with him and listen to the birds sing like we used to.

Thanks to both of you for everything. Every time I close one of these messages I'm glad I don't wear eye make up because it would be all over my face right now.

[Patti B]

(((((Michelle))))

Maybe your husband never discusses this with you because he doesn't want to upset you. Sometimes us survivors tend to try to protect our loved ones. Or, maybe it is denial on his part.

Maybe you should talk to his oncologist. Wasn't it his regular doctor you talked to?? See what the oncologist has to say. I can totally understand why it would be so difficult for you to discuss the subject with him.

One last thought - do you think your husband is at all depressed??? Could that be why he doesn't talk much about his cancer??? Many of us suffer from depression from time to time simply because of the strain having LC puts on us. If so, talk to the doc about getting him an anti-depressant prescribed for him. Many, many of us here have taken some from time to time.

I hope you do get to sit outside and listen to the birds real soon. Keeping you both in my thoughts.

Hugs - Patti B.

[recce101]

Michelle, please check this item at GRACE. It puts a whole new perspective on denial:

http://cancergrace.org/coping-with-canc ... mechanism/

Thanks for the clarification on the insurance question. I put "medicare primary secondary" (without the quote marks) in a Google window and got quite a refresher course. In my case Medicare is primary and the remaining 20% is picked up by Tricare for Life since I'm a military retiree — a pretty good deal in anyone's book.

I'm betting you get to watch and hear some birds this weekend. Aloha,

Ned

[jaminkw]

Michelle, all I can say is I was shocked at your doctor's words. After being on this site for so long, it seems premature for you to give your husband a message that you fully believe will cause him to loose all hope. If you are worried that you are avoiding the conversation for yourself and not him--tell him that. Without going as far as the doctor did, tell him you're concerned that he might want to consider options to suspend treatment and you don't want to negatively influence him. But reassure him that if he wants to continue to fight this thing, you're willing to stand beside him in that fight. This is not an easy journey but my husband and I know that his choices woiuld probably not be mine. This is my life and I get to decide.

Judy in Key West