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Mom in Hospital 2nd time in 3 weeks


Marci

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Hi All,

Well we made it through X-mas and then on 12/29 Mom asked my Dad to bring her to the hospital b/c her breathing was really bad. She stayed in her room on X-mas day on oxygen and we gathered around her in her bed and hung out. Well they diagnosed her with radiation pneumonitis. I was blown away b/c she hasn't had radiation to her chest since April. Well come to find out that the Oncologist thinks that the Taxotere she was on made her lungs remember the radiation and so now she was put on Prednisone and they are slowly weening her down. Also taken off Taxotere and to start Alimta when all this other stuff is over. That was the first trip to the hospital stay was from 12/29/08-01/06/09 - Yup we missed New Years together but were on the phone at midnight. Its an old tradition we used to go out of our front door and bang pots with a spoon. I know you all think were crazy right!!!!! Boy did I miss that this year! Now that I think of it I should of done it anyway by myself just to do it. Now onto 2nd stay of hospital woke up on 1/13 vomiting bile,etc. Taken to ER - diagnosed acute diverticulitis. Wow what a year so far! Sorry for the long speel but haven't talked to anyone lately. Hope you are all feeling well and this new year brings you many blessings to all of you! Please pray for Mom to improve soon so we can attack with this other chemo!

Marci

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Marci what a time you all are having. I hope things level off soon. Sorry about mom's pain and suffering with the diverticulitis but at least it wasn't cancer related. He are wishes they get her well soon so she can get back to the cancer fight.

Judy in Key West

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Radiation Pneumonitis stayed with my mother since her radiation in 2005... luckily for us we had a doctor that kept her on prednisone all those years or else might have not have had the great results she did all those years most only keep you on for a short duration. If your mother is on taxotore another thing you should make sure they check is her heart (using an ultrasound), during my mother's last trip to the hospital they discovered that part of her breathing problem was her heart pump which was not pumping properly which they suspected was due to her long-term chemo.

I will continue to say prayers and please feel free to reach out to me as I have dealt with what you have been through and I know it is not easy.

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Hi Everyone,

Thanks for the posts. Hope all of you guys are doing good too. Well, the goods news is that Mom came home on 1/20. Bad news for her is more chemo to look forward to. I guess I'll try and look at the bright side no one told us the this fight is over yet! Hopefully this treatment will click with her instead of giving her so many side effects like the Taxotere.

Sending you all my best

Marci

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I, too, developed radiation pneumonnitis and have been on Prednisone (constantly changing doses) since 05/07.

I have a "love/hate" relationship with Prednisone due to its many severe side effects, but it it also the primary reason I'm still alive thus "love" wins out in the long run.

It is important, however, that you read up on the many Prednisone side effects and stay abreast of them so that you can make decisions (some in advance of symptoms) as to treatment for its side effects. If you read "my story" (link blelow), you may get depressed over my many prednisone-nduced trials and tributlations, but it will also provide clues as to what you want to look for and how they can be combated.

My latest Prednisone nightmare (not yet updated in "My Story") is that after a year and a half, my adrenal glands finally quit working so I am now permanently Prednisone-dependent.

I continue to look at positive side though, and that is that because of Prednisone I am alive. When measuring that against side effects, clearly the Prednisone wins! :-)

Best of luck to you all.

With love and affection,

Carole

PS My radiation pneumonitis was not due to chemos: 15% of all lung cancer patients who undergo radiation therapy develop radiation pneumonitis. I was just among the "lucky" 15% is all.

Life is not measured by the number of breaths we take, but by the moments that take our breath away.--George Carlin

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Thanks for information and posts everyone. Carole, thanks for the informative Prednisone info. Yes, love/hate I can see, my Mom feels the same. My Mom just developed a lump in her breast very close to the skin surface like a grape size. Afer much research on the Prednisone this can cause lumps/bumps in skin so I am hoping for that is what it is and not the cancer acting up again here. I am curious on the adrenal glands issue you had, my Mom also her adrenal glands have grown in size along the way. What role do your adrenal glands provide to the body? And what happens when they are no longer working properly? Any info. would be great Carole and I hope you are doing good yourself with your journey.

Thanks-

Marci

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Hi, Marci.

The adrenal glands produce cortisol, which is the "natural" version of Prednisone. The adrenals have a "thermostat" that tell them how much cortisol to produce and when (usually morning "bursts"). If we develop inflammations such as radiation pneumonitis (or arthritis, rheumatism, etc.), our adrenals may not be able to produce as much cortisol as is needed, thus we are prescribed Prednisone as a supplement (radiation pneumonitis requires large supplements compared to arthritis et al).

When I first developed radiation pneumonitis (in May 2007), they prescribed 60 mg. daily (morning dose), then once I started doing better (within 2 weeks, I think), they began gradually reducing the dosage. I was never able to get off it completely (I made it down to 2.5 mg one time, then had to jump back up to 40 when I had a recurr\ence).

Problems with the adrenal glands develop after long-term dosage of Prednisone. As noted above our adrenal "thermostat" checks each morning to see how much of a burst of cortisol that we need. Because we're on Prednisone, the "thermostat" decides we don't need any. After a while (in my case about 15-17 months), the adrenal glands can "forget" how to check for and produce cortisol so that we become totally dependent on Prednisone.

Last October I was (as usual) trying to lower my Prednisone. Normally this would be fine as any extra that my body needed would be prodiuced by the adrenals in the form of cortisol. Unbeknownst to me, however, my adrenal thermostat had quit working and wasn't producing any cortisol at all, and I was taking too low a dosage of Prednisone as a result.

The symptoms were excessive fatigue and lack of energy. Because I am on hospice, had ceased all treatments in June and knew that my cancer was progressing, I "assumed" that I was experiencing "cancer fatigue." Throughout the rest of October and most of November, I continued to "decline," and finally told my hospice nurse that my quality of life was so low that I was going to cease my "non-traditional" treatments (which included vitamin C by infusion, Vitamin D, other vitamins, herbs, minerals, etc., plus oxygenated water, electromagnetic therapy, acupuncture, massage, magnets, blah blah blah) so as not to drag it out.

She asked me to hold off until my hospice doctor could discuss it with me. My hospice doctor came to the house, stayed about two hours, during which she asked me scores of diagnostic questions. When she was done, she told me there were four or five possible explanations besides cancer fatigue and number one on her list was the possibility that my adrenals had quit producing cortisol. She upped my Prednisone and told me I would know within 72 hours if that was it. I knew in 24 hours and was jumping around "happy dancing" within 48.

Twice since then I have "forgotten" to take my Prednisone one morning, and in each case missing just one dose knocked me out for a good 5 days (I now have my entire health care team plus multiple family members and friends checking with me daily to make sure I've taken my Pred!)

I don't have to tell you that my hospice doctor is MY HERO (this past Tuesday, instead of lying in bed dying, I was throwing an Inauguration Day Open House attended by over 60 people!).

Sorry to go on in such detail, but you can imagine what a huge diffference it made to go from deathbed to dancing in less than a week! :D

Anyway, I hope this helps and best wishes to your mom from me.

With love and affection,

Carole

PS It's not that I expect to live forever... I am very realistic about my condition. It's just that if one has to die, much better to feel good during the interim than to be miserable instead.

Life is not measured by the number of breaths we take, but by the moments that take our breath away.--George Carlin

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