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michellep

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Posts posted by michellep


  1. I need your advise please. My husband has stage 3 (possibly 4 depending of further testing). Our insurance company (an HMO) has denied home health care as well as a social worker. The woman I spoke with says he is capable of transporting himself to doctors etc. Our primary physician disagrees and well as myself. He is unable to walk more than 2 ft without assistance, he sleeps in a recliner chair and uses a bedside comode and is transported to chemo in a wheel chair. I would like some advise from you as to how I can obtain a social worker. I heard that they can assist with ins companies and provide direction for assistance. We currently live in the high desert of California and there is no assistance avail from the american cancer society or any senior centers. Can you advise anything at all for us?

    God Bless

    Michelle


  2. WOW! Your message really touched me...and I thank you so very much. I feel so much better about not having this "discussion" with my husband after reading so many replies from wonderful loving people such as yourself.

    The picture you have here of your husband and yourself is beautiful. I imagine that you have many many loving memories of your lives together and I am so sorry for your loss.

    I too wish that we could find a cure for this horrible disease. No one deserves this.....no one. And I also believe that God holds a special place in heaven for caregivers like us.

    Bless you my friend!


  3. Thank you for all your kind words. The story of you and your husbands journey really touched my heart. He sounds like he was a wonderful man and I'm heartbroken over your loss.

    Yes, your husband and mine sound very much alike as far as keeping a positive attitude and wanting to discuss future events. Your words brought so much comfort to me because I just can't bring myself to tell him what the doc thinks his prognosis is. I will listen to the words from my heart....and they tell me to love him and make him as happy as I can for as long as I can.


  4. "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.

    (((Patti)))

    We won't be able to see the oncologist until July 20th. I would assume at that time he'll discuss the chemo effects etc. I wish we could see him earlier but that's not possible according to his staff. However I was able to ask the PA a few questions yesterday but she herself doesn't know too much yet. It's early I guess because we've only had a few treatments. Although they reduced the amount of chemo by 20% because it's just zapping his blood count. We go again tomorrow for another 3 units of blood.

    No, I don't think he's depressed. Actually on good days when he's feeling well physically (which if very few) he's alert and playful with me. Today even when we discussed how picky he is about food these days I suggested that he eat baby food. He laughed and asked if he could also have a rubber ducky at bath time. Once in a while he does seem agitated because he says he's tired of just looking at the four walls in the bedroom. I try to bring him out on good days but there aren't many.


  5. 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.


  6. I know what you mean about being stubborn. My husband also keeps taking off the oxygen, doesn't want to use the walker and we battle over having to use the wheelchair on doctor days. He also has a hospital bed yet refuses to sleep in it. He sleeps in a reclining chair.

    He too was diagnosed in 3-09 with NSSLC and is having a verry difficult time.

    I'm glad that you got to visit your dad and you'll be in my prayers. Let us know how things go ok?

    Michelle


  7. 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?


  8. "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.


  9. 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


  10. 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!


  11. 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


  12. 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 :(


  13. 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


  14. Thanks for the info Ned. I will go shop for the Spirometer asap :) I like the idea of him being able to exercise the lungs with this device!

    And Judy.....I wish you all the best on your next scan. I don't know when my husband will be getting one but I hope it will be soon. He too also has pressure and discomfort from his lung sometimes. Right now it's a bit stronger as well as the cough he has been I've been told this is actually the chemo "working". Makes sense to me because it usually gets worse 2-3 days after and then his last chest xray showed noticeable improvement. It's just so hard to watch him suffer with this cough and not be able to sleep. (nor me)

    I'm so amazed reading the many stories of lung cancer survivors on this site. With all these doctors giving us nothing but grim news finding all of you is a true god send to me :)


  15. "cat127"]The chemo drugs/pre meds can cause restless leg, which could be seen as twitching when sleeping. Another thing I think people will notice is that once you have that diagnosis on the table, you start to notice EVERYTHING. Pains you would never have made a note of, you wonder could that be the cancer. It is possible that this isn't anything really new, but you never noticed it before.

    I talk to myself all the time, sometimes I argue with myself, sometimes I tell myself we are no longer speaking to each other. :) I guess to me, talking to yourself is pretty normal.

    I always second the idea of asking over at cancergrace.org - can't go wrong by doing that!

    Thanks Cat! Those symptoms can even describe the caretaker as well! :) I appreciate your advice and I believe you are correct on this.


  16. "jstdzy"]Hi Michelle,

    Sorry I don't have an answer for you. The only thing I can say is that I was probably twitching and talking to myself too, just from the sheer stress of it all. Have you gone to grace yet and asked Dr. West? Here's the link for you.

    http://www.cancergrace.org

    Dana

    Thanks for the info....I'm on my way there now. I sure am happy I found all of you here. I had been feeling so darned alone before and now I am beginning to truly feel empowered :)


  17. I was wondering if any of you happen to know what causes his body to "twitch" while sleeping? He's never done this before the diagnosis and isn't on any medications that could cause this to happen. Is it a indication that perhaps the cancer have traveled to the brain perhaps? I also find him talking to himself quite often.

    Any ideas of suggestions would be appreciated!


  18. "recce101"]Terrific news, Michelle! Did you bring home one of those plastic breathing devices (spirometer) from the hospital? As the numbers on that increase you should also see improvement in your husband's strength and endurance. Aloha,

    Ned

    No, we didn't get one of these. I researched them on the internet and it really looks like it might be a good thing for him. I'll ask the doctor about this when I see him on Friday. I wonder if it's by prescription or direct purchase because they look really expensive from what I could find. Thanks for the information Reece!


  19. Annie....my husband fell many times until I figured out on my own (not from the docs) that it was caused by some of the medications he was taking. They were giving him 3 different kinds of water pills and a sleeping pill called temazapam. Once I took him off those (except one water pill) he's been fine. Actually alert :) But I do agree with the others about an MRI and certainly talk to the doctor! Good luck and I'll keep you in my prayers!


  20. Took husband for chemo today and got results from last weeks X-ray which says there is "noticeable decrease in the densities". I am just thrilled! Maybe I can sleep tonight?

    Thanks to all of you for your wonderful advise and ideas. I'm so happy I found all of you because for the first time in months I truly feel like I'M NOT ALONE! Bless you !

    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 drained

    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


  21. WOW! Reading your posts really made me feel better, plus reading more in depth about your stories was truly amazing! Thank you all so very much!

    Recce asked me how long my husband has been on chemo. He's only had 3 treatments so far. Some were postponed due to low white cell, red blood cells and then hemaglobin. He had to have a transfusion as well. He has another scheduled for tomorrow pending blood tests results. He has a port so they test it immediately before chemo starts.

    I've been reading about many patients using Avastin and Altima. Not sure which one of those it is, but I read that one of them actually targets the cancer itself and not the good body cells. Do you know why more aren't using this one? Are there bad side effects or is it too costly for the insurance companies? Good Lord we KNOW how those insurance companies are. They collect your payments for 30-40 years and when you need help they try ever trick in the book to deny you coverage. They even denied nausea medication for my husband until I screamed my head off and told them that unless they approved it within one hour I was going to bring him into their office so he could puke on their nice expensive carpet!!!! Guess what? The pharmacy called in less than an hour and said I could come pick it up. I hate being so mean but sometimes you have no choice right?

    Thanks again to all of you and I am looking forward to learning as much as I can from each and everyone here! :D


  22. My husband was just diagnosed in February 2009 with stage III Adenocarcinoma with malignant pleural effusion. It all started when he was diagnosed with pneumonia in January 2009 and they drained the fluid twice, then a chest tube inserted followed by pluradesis (talc to seal the lung). He is currently on chemo with Gemzar/Carbo 3 weeks on and one week off. He is extremely weak and on oxygen 24/7 and can't walk more than 2 ft at a time so I transport him by wheelchair to doctors appts.

    My question to anyone who can help me is do any of you have information you can provide regarding this type of cancer and why would it all happen so fast? He was working out and the gym 4 days a week, quit smoking 2 years ago and was in great health (or so we thought) and now he has declined this rapidly? I don't understand any of this so any advise would be appreciated very much. I'm desperate to know if they are any long term survivors out there. I'm just terrified every waking moment.


  23. My husband was just diagnosed in February 2009 with stage III Adenocarcinoma with malignant pleural effusion. It all started when he was diagnosed with pneumonia in January 2009 and they drained the fluid twice, then a chest tube inserted followed by pluradesis (talc to seal the lung). He is currently on chemo with Gemzar/Carbo 3 weeks on and one week off. He is extremely weak and on oxygen 24/7 and can't walk more than 2 ft at a time so I transport him by wheelchair to doctors appts.

    My question to anyone who can help me is do any of you have information you can provide regarding this type of cancer and why would it all happen so fast? He was working out and the gym 4 days a week, quit smoking 2 years ago and was in great health (or so we thought) and now he has declined this rapidly? I don't understand any of this so any advise would be appreciated very much. I'm desperate to know if they are any long term survivors out there. I'm just terrified every waking moment.


  24. I had the same problem with my husband. Once he was diagnosed they gave me about 18 different medications to give him. Some were sleeping pills and diuretics. I swear....he was just so "out of it" that he could barely open his eyes and getting him to eat was close to impossible. I was convinced at first it was the cancer itself BUT I watched his behavior very closely and called a different doctor. I told him that in my opinion the problem was actually the meds. He said "Michelle" you should have your medical degree because he is over medicated and severely dehydrated!!!!!!!!!!!!!! Please keep notes and monitor his reactions to ALL meds. My husband is actually responding now and eating very well. I only give him tylenol pm's and diuretics every other day. Good luck to you and please keep us updated!

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