beckyg Posted July 23, 2003 Share Posted July 23, 2003 My shortness of breath is not getting better. I have oxygen at home and a portable oxygen tank to drag around with me on campus. It helps me recover a little faster from doing strenuous things like walking down the hall to the bathroom, but I am still getting out of breath from basically everything. Every time I have felt bad before in this treatment process I have know that it was temporary, that it so many days or weeks it would get better, and if not, what to do about it. But this time no one seems to know why I can't breathe. Maybe it's radiation pneumonitis. Maybe it has progressed to pulmonary fibrosis. Maybe it is a reactin ot the Taxotere and as my body heals from that last dose, I will start to be able to breathe again. There is just something really disheartening about dragging an oxygen tank around. Ten days ago I went to the zoo with my daughter for a couple of hours. I was tired at the end, but I wasn't gasping for breath. Now I am gasping even with oxygen just walking around my house. Curtis is working on getting me in to see the radiation oncologist today or tomorrow. They did tell me that radiation pneumonitis could set in anywhere from 1 to 6 months after treatment ended, and my treatment ended May 5. But they didn't tell me that if it happened it could be like this. They said it would be like bronchitis, which I have had many times and that never felt this scary. I have never had any doubts that I was going to win this battle with cancer until every breath became a battle Saturday morning. Work is still being incredible. I can sit in one place and work just fine, so I plan the lessons and homework and grade and write tests and other people stand up in front and talk for me. Those of you with radiation pneumonitis--was it like this for you? Please tell me it gets better. Becky Quote Link to comment Share on other sites More sharing options...
norme Posted July 23, 2003 Share Posted July 23, 2003 Becky, i have said this a thousand times on here but i want to say it again. are you taking any meds that have side effects of shortness of breath. this along with the radiation could be the prob. this happened to my husband, the dr prescribed twice, meds that made him short of breath. at one point he was really trying hard to breath. once off the meds he would be okay again. the meds were for pain...ck with your druggest/ tell them what you are taking, see what they say.... Quote Link to comment Share on other sites More sharing options...
Fresca Posted July 23, 2003 Share Posted July 23, 2003 OH I don't have any advice, I just wanted you know I am praying for you Becky. Hang on sweetie, I know you will get better and beat this. I will continue to pray for you. Rana Quote Link to comment Share on other sites More sharing options...
Fay Posted July 23, 2003 Share Posted July 23, 2003 Hi Becky, My Mom ended up with radiation pneumonis. The oxygen helped somewhat, but the sterioids (decadron), also helped. We also tried her on an inhaler (puffer) twice a day called combivent, this really helped. Perhaps you can get your doc to try you on it. Good luck, Faylene Quote Link to comment Share on other sites More sharing options...
Bonnie Posted July 23, 2003 Share Posted July 23, 2003 Please call your doctor ASAP! When Howard was dx'd with radiation pneumonitis his oxygen level was at 68, with normal being 98-100! I don't know how he managed to get in to the doctor's office. They put him on steriods and he spent 6 days in the hospital. He went home without oxygen and has been able to return to work full-time. Please call your doctor, or at least go to your ER and have your oxygen level checked. May God bless you and I'm adding you to my prayer list! Bonnie Quote Link to comment Share on other sites More sharing options...
Fay A. Posted July 24, 2003 Share Posted July 24, 2003 I agree with Bonnie... My Mother had Radiation Pneumonitis and what you're describing does not sound like the onset of that. I am concerned that you were out at the Zoo 10 days ago. It is possible you may have picked up an airborne infection from the soil, especially if you spent time near an aviary. Some of these infections are fungal, but this isn't something that can be distinguished without cultures. People going through cancer treatment are usually advised to stay away from zoos, aviaries, and places like that. Hoping you are okay, Fay A. PS the tank IS a pain in the butt to cart around. Ask your physician for a script for the smaller (1 ft tall tanks) condensor unit. You can either carry it around in a shoulder bag, or in a small back pack type carrier. Each tank lasts almost 10 hours, which means they last longer, too, so you aren't going to have to change out the tanks as often. Quote Link to comment Share on other sites More sharing options...
AdaW Posted July 24, 2003 Share Posted July 24, 2003 Dear Becky, I don't have radiation pneumonitis, but I am back on O2 again after my latest surgery. Just remember that the oxygen is very healing for you--it's helping you to get better sooner. So try to think of it as a temporary thing, especially since you haven't talked to the radiation oncologist yet. I know it is disheartening to drag the O2 around, but soon you won't notice that it is on. I have a portable tank that only delivers oxygen when I breath in. See if you can get a different tank. One that is less obtrusive, lighter and easier to carry. My Mom (83 years old) went out and bought me a cane this week. I am still having tremendous leg pains since my surgery. Using the cane makes me feel like I've lost ground. It's sad for me, but it helps, I think. I don't really know how to walk with a cane. I try to remind myself that this is a temporary setback and needing the cane right now doesn't mean that I am going downhill or that I will always need it. I hope you'll be feeling better soon and that the oxygen works well to heal you. Ada Take care Becky Quote Link to comment Share on other sites More sharing options...
gail Posted July 24, 2003 Share Posted July 24, 2003 Don't have words of wisdom, but wanted you to know I am sending you warm fuzzies and hugs. gail Quote Link to comment Share on other sites More sharing options...
sophia88 Posted July 24, 2003 Share Posted July 24, 2003 Becky..I am praying for you....hang on though..my Dad is getting Taxotere and had the same side effect...he carried the oxygen too but still could go barely 6 ft. without sitting down and resting...give it some time and it may go away...Dad's did...I pray you have the same rebound from it as he did....may God give you a rainbow and some sunshine..you deserve it. Quote Link to comment Share on other sites More sharing options...
Sam'swifeShirley Posted July 24, 2003 Share Posted July 24, 2003 Becky, It sounds like radiation pneumonitis to me and I know about this problem all too well. I don't know why but oncology Doc's just don't seem to want ot make this diagnosis, even when it hits them in the face. Maybe it's because doctors get sued over this problem. The symptoms usually respond well to high dose oral steroids. These have ther own side-effects unfortunately but they can be dealt with. And you need to be sure not to taper the steroids too soon or too fast. I made that mistake too. Early on, the diagnosis has to made based only on history and symptoms. A CT scan is the best way to see early disease but it may miss it early on. Tell your O2 supplier that you want "M-6" tanks which are the small shoulder carriable tanks. They last about 2 hours at 2-2 1/2 LPM. The E-cylinder is the standard drag-around tank and probably what you have. They last 6-8 hours. Let us know Sam Quote Link to comment Share on other sites More sharing options...
Debaroo Posted July 24, 2003 Share Posted July 24, 2003 Becky, I don't have any advice either. My dad had fluid build up in his lungs, which caused severe shortness of breath, but his blood oxygen level was still a 98, which the doctors were really surprised at. He had the fluid drained and talc was put into the lung to help, seal it, I guess. It helped alot, and hopefully he won't get it again. Just wanted to let you know that you're in my thoughts and prayers. let us know how things go with the doc. Take care, Deb Quote Link to comment Share on other sites More sharing options...
cathy Posted July 24, 2003 Share Posted July 24, 2003 Hi Becky, I am so sorry for your breathing problem. I know from my dads experience that nothing else matters when you cant breath. I did want to tell you that he doesnt have to lug arouhd a tank when he is home. His oxygen plugs into the wall and he has an extension tube that gets him all over the house, which would work so much better for you. Also if you do get one of these tanks tell them you want a humidifier on it, very important so your nose doesnt get dried out. I also wanted to tell you my dad didnt get properly diagnosed with the pneumonitis until he went to his pulmonologist. I 100% agree with Sam the oncology team doesnt want to make that diagnosis. Be persistant Becky, go see your pulm. specialist. Keep us informed Quote Link to comment Share on other sites More sharing options...
beckyg Posted July 24, 2003 Author Share Posted July 24, 2003 My blood oxygen level while I am not on oxygen is a 93. I will check on the smaller tank. The radiation oncologist won't see me until Tuesday, but I have been seen by the medical oncologist who ruled out fluid in my lungs and pulmonary embolism. Thank you all for your posts--you guys are so helpful. Becky Quote Link to comment Share on other sites More sharing options...
Karma1976 Posted July 24, 2003 Share Posted July 24, 2003 I also can not offer up any suggestions but just wanted to say hang in there!!! Sending great vibes your way! Quote Link to comment Share on other sites More sharing options...
Sam'swifeShirley Posted July 24, 2003 Share Posted July 24, 2003 Becky, The plug-in oxygen machine is called a "concentrator" and you definitely need one at home with a 50' tubing. You also need a "conserving regulator" or "conserver" to use with your tanks, especially if you get the "m-6" tanks. If this is radiation pneumonitis, the sooner you get on steroids, the better. If, thank God, you don't have a plumonary embolus "blood clot" or fluid accumulation or pneumonia, with your history and symptoms, if I were your doc, I'd start high dose steroids right now. The sooner you do, the sooner you may get off the oxygen. An O2 saturation of 93 is not very good. I get really woozy when mine gets that low. I don't mean to be an alarmist but I speak from knowledge and experience. Here's a very good link for those who want more information on personal oxygen use. http://www.portableoxygen.org/overview.html Quote Link to comment Share on other sites More sharing options...
Connie B Posted July 24, 2003 Share Posted July 24, 2003 Becky, I had Radiation Pneumonitis after I completed my radiation treatments 3 months later and I'm hear to tell you that I had a HECK of a time breathing. It was AWEFUL!! I had a heck of a time taking 10 steps without feeling like I was going to pass out. Honey, you need to do something ASAP! Just my humble opinion! I just don't think you should wait until Tuesday...... Mine got better after I was on steroids, but they didn't really kick in for two weeks and I was on them for 6 weeks. I also know a man that was in the hospital for this, because the doctor's kept overlooking it and he really went through some hell. Thankfully, he is here and fine today. Good luck and God Bless, Quote Link to comment Share on other sites More sharing options...
beckyg Posted July 24, 2003 Author Share Posted July 24, 2003 I am already on Prednisone--I am not sure if it is "high dose", but my medical oncologist wrote me a presription for it on Monday when he couldn't find anything wrong. He also gave me a prescription for Albuterol (inhaler) and said that between the two of them, my air passages should open up and I should start breathing easier in a couple of weeks. I haven't been able to tell that the Albuterol is doing anything, but I have been faithfully puffing 4 times a day as directed. You guyys have made me feel so much better--that there will be relief somewhere in the future. My condenser at home has an extension on it long enough that I can get to my bathroom, but my house is set up in such a way that you have to travel down a very long hallway to get from the master bedroom to the living areas. So Curtis drags the condenser into the living room and plugs it in and I use the cart until the condenser is ready. The part that makes this hard to cope with is not dragging my oxygen around, but that is doesn't make me able to do anything more, at least yet. I still am gasping like I ran a race by the time I walk down the hall at work to the restroom. I recover faster now that I have oxygen, but I was hoping for more. I know, I need to have patience, but that isn't easy for me. Somebody mentioned humidifiers. The guy who delivered didn't mention anything about a humdifier, but i can tell you that on both modes of delivery, as soon as I put the cannula in my nose, my nose starts running. So I don't think I am getting too dry in there! I will check with the doctor this afternoon about the dosage on that prednisone and about the smaller tanks. My pulmonologist is in Houston --3 hours away, so if I can get the appropriate treatment (armed with all this information) out of the oncologists here, I will spare myself that trip. But we'll see. I'll continue to keep you posted. Becky Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted July 24, 2003 Share Posted July 24, 2003 You're in my thoughts and prayers, Becky. Blessings to you and your family, Peg Quote Link to comment Share on other sites More sharing options...
Connie B Posted July 24, 2003 Share Posted July 24, 2003 Hey Becky, Well my Dear, it takes a week or better for the Prednisone to kick in. So, as long as your on it, I can tell you I feel better! (may not help you to breath, but I feel better knowing you on it) It's going to take a little while for you to get back to normal. You might want to TRY and take it easy for a couple weeks. Wishing you WELL REALLY SOON my DEAR!! Hang in there, your going to be on the mend real soon! Warm and Gentle Hugs, Quote Link to comment Share on other sites More sharing options...
norme Posted July 24, 2003 Share Posted July 24, 2003 Hi Becky, its me again. i was just reading what everyone was saying regarding the oxygen tanks. buddy was on oxygen after the lung was removed and he had the one for going out that you put in a purse like container and carry however, my neighbor, who i just got off of the phone with has a much better type. he told me to tell you to tell your dr you want on liquid oxygen and that the prescription to the supplier and ask for Helios. it is a small container that has a nice handle to carry and it lasts for up to 10 hours and only weights a very very small amt. he has been on oxygen for about two years now and says this is the best. that might be what fay was talking about. the one sam was talking about is what my husband used and it only lasts about 2 to 2 1/2 hrs. the 10 hr is great per my neighbor... hope you start feeling better soon. Quote Link to comment Share on other sites More sharing options...
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