Stage 4 patients with SOB

[Justakid]

OK, my SOB is getting on my nerves. I have reduced my prednisone to 30mg (working towards 20mg cause of the weight gain that is sufficating me!) I have two inhalers now, any clues on how long it will take to get adjusted to the reduced steriods and inhalers.

I cough more now and get stuff up so I know those inhalers are down there stirring stuff up which is good, we wanna get it outta there.

I still can't get past the fact that I have stage 4 and everyone keeps telling me how wonderful my color is and great I look (aside from the weight), if it wasn't for the SOB, I would think I would almost feel what could be considered really good! I know that there are lots of Stage 4 who are doing great....but I expected to be deathly ill cause of it.

I don't know guess I'm just complaining, waiting and trying to make my miracle happen.... waiting for the 11th for the scan and trying not to get too excited that everything is cool. Tring to remain calm and not get hysterical like I usually do! Think my worst times are 1st thing in the morning and at night (which is pretty normal). Shrink says that there is not much we can do about the epression becauseof the amount of steriods I am on, the amount of antidepressants she would have to give me to get through the steriods is not worth it. I'm starting to see her once a week now until we can get things under control.

Guess I've rambled long enough......here's to a GREAT April FOR EVERYONE!!!!!!! Good test results, inprovements and less procedures all around!!!

[Patkid]

us, too, Beth.

We are trying to have a spring attitude. We did really good at first, then with the rough chemo round have been fighting some depression and bitterness.................................

CT for Bri on 5th.........results at next onc visit on 13th..................

Brian's medical record states that Brian is entirely too healthy to have the extensive Stage IV Lung Cancer that shows on his tests.

I guess we should try to revel in the good things (like feeling fairly well) and not let our knowledge of the disease influence how we feel. We really identify with your post and are grateful to read that someone can put our feelings into words.

Brian sends empathy and support, honey.

Can you take ativan with the sterioids? That helps Bri get to sleep when the monsters under the bed try to keep him awake and worried.

thanks for being here and for setting a good example for us.

Relative to weight issues..........................we know how much we can all be affected by what the scale says, or by how our clothes fit and how comfortable we feel in our bodies. Seems ridiculous that even w/ LC stress Brian still weighs everday and worries that the work he did to get at a "healthy" (ha ha) weight will be undermined by stress eating and by high calorie food that comforts him when his tummy is unsettled........SO MUCH OF THIS WHOLE PROCESS IS JUST GROSSLY UNFAIR.

We will join you in the quest for sanity, positive thinking and determination.

[cindi o'h]

Hey Hey Hey... you are talking my language..when you are talking SOB!! I am right there with you!

Not stage IV, but close as you can get without being a stage IV.. ! lllB..so far.

Prednisone...weight gain, fat face...(where did my eyes go...and where did those cheeks come from?) honeys...I am with you on this. I am determined to get off this shi_ too and get my life back.

And, Miss Beth, you are sounding mighty fine today!

We will all hang in there together and whoop this bugger, K?

love, Cindi

[kimblanchard]

Beth, just a thought - are you using home oxygen, maybe even just at night? It might really benefit that SOB feeling, get more reward for your effort. I think you need to register under 90% to qualify for oxygen - sitting you may not but if you walk up and down the hall a couple of times and then the nurse checks it, you might get it. Sorry to suggest it but I just want you to feel better. Margaret

[CharlieD]

Hey Beth and Cindi,

Can a Guy get a word in edgewise here? LOL You gals are all beautiful and I have never laid an eye on any of you. Steroids, Prednisone be damned so don't get so hung up on it, OK? In all seriousness, I'm a little confused on this idea that if you are Stage IV that you should feel bad and be in bad shape. On my original diagnosis, I was Stage IV due to a tumor on my right lung and a very small minute spot on my left. I was running 2-3 miles a day and felt and in my opinion looked, great. I didn't feel at all bad til I started Chemo a month later. I am still Stage IV almost a year later (This week will be 1 year, so get the bar ready Cindi) and still feel great except during Chemo when I feel awfully tired and some SOB. The tumor situation is about the same, just a bit smaller.

So, maybe I've been under the wrong assumption, but I didn't think the stage had anything to do with it. My biggest problem is the acid reflux/nausea thing that I can't shake now after the 3rd reload of Alimta. I've tried everything, Zofran, compazine and now they told be to go back on dexomethosone (sic) which I read is 10 times stonger than Prednisone and it hasn't helped much if at all.

Anyway, thanks for letting a guy get in and whine a little. Take care and God Bless you all.

CharlieD

[Wendy]

Hey Charlie,

I noticed you mentioned in your post to Justakid that you are having tons of trouble during your chemo with acid reflux and nausea. Have you tried taking a prescription strength reflux medication such as protonix or one of those? Just a thought, I know I had problems with it and when I took the reflux med (in addition to the nausea stuff you mentioned) it eliminated the problems.

Wendy

[cindi o'h]

CharlieD.. you can get a word in edge-wise any old time you want with Beth and I ...we think you rock..( I am speaking for both of us here)

And we think you are a good looking guy too, don't we, Beth? (Beth always agrees with me, don't you, Beth? lol)

Personally, Charlie, dexamethazone and I do not get along well at all. Prednisone I can tolerate, but I had some kind of reaction once to the dexa and never again...that or a combination of that and something else literally fried my brain so that I couldn't think straight for months. It was a nightmare. I hope you don't have that happen.

love, to my good buds.

Cindi o'h

[mayos]

Hello Beth....I was just wondering if you've tried the "pursed lips" breathing techniique during any of your bouts with SOB?? It often works when other things don't....just stop...take in a deep breath of air through your nose....then let the air out through pursed lips. This is taught in pulmonary rehab programs and it's been a real help to me. Maybe O2 is the answer for you...even temporarily. It's not so bad to end up feeling so much better.

[richinsdakota]

I dunno if this helps at all...I probly was dealing with much milder symtoms....but when the prednisone had me sobbing in despair in the emer. room...doc gave me Lorazepam and it completely nuetralized the steroid reaction. I still take a few jus for general anxiety, sure works for me...

Also, my acid stomach from pain meds, etc., was nuetralized by Nexium...the "purple pill"? Fairly expensive, but when taken every other day...rivals the cost of lot of otcounter stuff and works better. Sure helped me. Course, its an every day pill for severe symptoms at first. Ok...anyways, good luck to you...Rich B.

[Justakid]

Thanks guys, I think my sleep apnea is also back cause of the weight (use to have itwhen I was just fat - not medicated fat). Going to call the pulmonary doc (at the oncol suggestion) and see if he will see me about it. I do sleep sitting straight up, sometimes it works sometomes it dosen't. Not working tonight, decided to get out of bed take another Xanax and watch some TV downstairs. Maybe with 4 pillows I will fall alseep in the recliner.

Still plugging along. Things could be worse I guess.

[slinaresholz]

Hope everything turns out fine for you. I'm on Advair for my asthma and the lung surgery really left me short of breath. I was not before the surgery. I'm scared of the steroids. My Aunt's predisone caused her bones to snap like twigs. Now she has to take shots to build up her bone density. She was taking fosemax all along. The doctor told me the worse the Advair would do was cause osteoporosis and she thought I already have that. Did you ever have trouble with your bones because of your steroids? I'm glad you are doing so well.

Sharon

[carole]

Beth, I think it must be possible to feel Ok with stage IV. My husband was diagnosed with stage Iv in Nov. after he had a car accident and they were doing routine x rays for broken ribs. good news -ribs fine. bad news 5.5 cent tumor. his only symptom was a slight cough. now of course he is very depressed and who could blame him. Hope you are feeling better today. My husband does not seem to have any shortness of breath. Carole

[stand4hope]

Beth,

Stage IV doesn't mean anything more than the cancer has spread outside the lung. Of course, there can be various degress of Stage IV, as well.

My understanding is that a large percentage of the time, lc isn't even discovered until it has reached Stage IV because there are no symptoms to send a patient to the doctor. The only symptom my husband had was a severe headache, and he only had that 3-4 wks before diagnosis. By that time, he had a 7 cm. tumor in his lung, 8 brain mets, and we don't know how many bone mets. The headache disappeared in 24 hrs. with decadron, and he also had radiation to his shoulder for pain from a met. Other than that, he has been nearly symptom free for 20 months and continued to work a full-time job.

He, of course, had problems with treatment and has some fatigue, but those couldn't be classified as cancer symptoms.

So, yes, you can be Stage IV and feel good. If you look good, and your color is good, than I think that is wonderful.

Love,

Peggy

[lilyjohn]

For the shortness of breath ask your doctor about Theophylline. It relaxes the airways and is often used long term for people with asthma. It worked great for Johnny. Also a word of caution. Oxygen can help if the SOB is bad on a low setting but a high oxygen setting can increase the risk of inbalance of blood gases. That can be dangerous.