Radiation recovery
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Something for everyone!This one's for me...
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Yum Joan! Kate, I don't have a Cheesecake Factory near me so I didn't realize how pricey it would be. You can have as much or as little as you want--it's your birthday!
Encyclias, that's a crazy story. It must have been really disconcerting to have your heart bounding all over the place. I'm glad your doctor figured it out. Good suggestion for others too.
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Gigil I will get pineapple upside down cheesecake for you, and Joan I will get red velvet cheesecake for you. Joan sorry about all of your power outages.
Cindy, can't wait to hear about your birthday party.
xoxo,
Kate
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My family and friends are so excited about the Blackhawks win tonight against Boston. Blackhawks could take the Stanley cup Monday night-YEAH! Go Chicago!
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My granddaughter Maddie and her boyfriend Kyle0 -
Sorry about all of the extra stuff I don't know how to access it without all of the extra's. The photo is my granddaughter Maddie and her boyfriend Kyle at a Blackhawk's playoff game. I may be prejudiced, but I think she is as beautiful as a model. Turns out that she wants to be a physician's assistant. She will graduate college in two years, and she has to take two more years of classes to achieve her goal, so six years of college altogether. She sure doesn't take after her grandmother, because there is no way that I would want to do anything in the medical field, but her daddy's sister is a doctor who heads up an emergency room and his father was a doctor too.
Go Blackhawks! Go Chicago!
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Typo it should be extras
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Kate, she is absolutely beautiful. She will have a great career as a PA. They are so needed and in demand right now. There is definitely a shortage of primary care physicians, and PA's and NP's are filling that gap. Good for her. Beauty and brains!!
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Thanks Gigil I adore her!
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Gigil, My Mo said a physician's assistant is a great job. He said the salary and hours are great. I think he is jealous of the hours, because his job is more like 8 am -10 pm. Sometimes he even emails after 11pm or as early as 6am. He just hired a nurse practioner to help him. She is nice, but I would much rather deal with him, so thank God he answers my emails daily, if I send him one. One day I sent him five emails, and he answered all of them. I am so lucky to have him. When I am alone and frightened about some medical issue he puts my mind at rest. I usually only panic or get hysterical until I hear from him. Then I feel like a genius family member. or someone close to me is taking care of me. I've had bad luck getting two unrelated cancers, but very good luck finding him.
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Kate my PCP answers my emails too. I love her as well. She makes me feel cared for.
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Kate, your granddaughter really is a beauty! And smart too, with a great plan. I bet she'll be a better PA for knowing you and your story and what you need from a practitioner. My new MO says she'll answer emails, which will be a first for me with a doctor. I haven't written her yet.
I'm here in Bruins country so I can't echo the "Go Blackhawks!" part. Go Bruins! (Actually, I'm not really into hockey. I love basketball instead, and my team didn't go all the way this year. I like it when the Red Sox are doing well too. However, if the Bruins lose this tournament, I know dozens of people who will be wearing black arm bands for months.)
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As you all know, just finished a one week clinical trial, dose dense rads protocol in April. I had high milligrays (almost 9 a day) in 2 x a day trmts (normal rads are about 2 mg a day) and the other night, I began having serious shortness of breath. It scared me so much that I had my DH drive me to the ER. They did all kinds of tests, searching for blood clots etc, including a CT scan and chest x-ray and they said they did not find anything except that they could tell I was a smoker before but did not see any "damage" or any COPD or emphysema etc.
I am STILL having severe breathing issues. My pulse ox was good but I feel as thought I can't catch my breath at all. This is not even on exertion, just at rest! It is horrible and I feel as though I am dying/drowning. I am calling my rad onc tomorrow first thing and also my MO since I just started (and stopped) Aromasin and was thinking it might be that (but I doubt it highly)
From all I have read, it could very well be the rads...and I have not a clue if it is reversible damage or not. I am scared to death that it may not be. Ugh...all this for DCIS and I probably would have been fine without rads. I am angry now that I did this treatment at all. I know it is standard protocol to do rads, but it is my left breast and I was worried aobut heart and lung involvement. They could not keep the bottom part of my left lung out of the field although they tried and now I can't breathe right.
The hospital suggested I was having a panic attack which kind of pissed me off cause it did not feel that this was the way it was. It happened when we went to bed on Friday night. Ten mins after I got in bed, I realized I could not take a deep breath. It got worse and worse until I was gasping for air. I am still feeling as though I am gasping. Taking an ativan helps a wee bit and I slow my breathing down. I get one good breath every hour or two.
Anyone else experience this? I am so nervous. I read an article that said it can mess with the surfactant (the stuff that helps us to breathe) and I have no idea what is happening. i just know it is AWFUL!
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Kate - I love Cheescake Factory too. Wish we had one. They have a cajun pasta I really love and then some sort of Lemon Cheesecake. Yum. We used to eat at the one in Sherman Oaks all the time. Right down the street from my job. Miss all that.
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April I am so, so sorry you are experiencing this. It sounds horrible and very frightening. I wish I had some answers for you but must say I am glad you are calling doctors tomorrow. Rads takes a toll and I know I experienced severe chest pains during rads. Like you I went to the ER and they found nothing wrong. They thought it was costcochondritis and said it could be related to rads. Of course my RO said not possible. Sheesh! You get some answers and get some help April! Not being able to breathe is scary. Of course there is a certain amount of panic when you can't breathe, but it doesn't sound at all like that caused the initial problem. I am glad the Ativan helps a little. Once you experience this of course you are going to be unable to relax! Please, please make someone listen and help you tomorrow. Try hard to hang in there hon. We are here for you anytime! Big healing hugs to you.
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April - I have a lung disease so I am a little different but after rads my lungs acted up too. I was really scared and they had to give me a steroid quick pack to get it back to normal. It feels like your lungs are really small and not expanding. I think it is rads too. Mine went away pretty quick but ended up on ABX because I caught a cold. If it continues to happen go back to the ER and ask for a pulmonary consult as well as your MO takling a peek.
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April, how awful. And the worst part is they can't figure it out. How's about calling the RO on call at Yale? Personally, big sissy that I am, I'd already be on my way there; nothing could make me wait all night. Probably it is not something serious, but if it is rads related, well, that's where you were treated. With respiratory issues, the ER has to take you right away, but, until they have your problem identified and addressed, you probably won't want to leave. I'd bring a good book and a toothbrush. If it stops, it stops. If they want to observe you, you'll be prepared. I also had that "panic attack" diagnosis once for something totally different. Felt like a brushoff. In truth, it just meant the guy hadn't a clue. Your guys too, it seems.
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April am so sorry about your shortness of breath. If you google Can Aromasin cause shortness of breath you will find that it could be a side effect. Whether it was caused by rads or Aromasin I hope it goes away soon.
Brookside thank you for the compliment about my granddaughter. If the hawks lose my family and friends will be depressed. With a 3-2 advantage I am hoping the Hawks take the Stanley cup. Go Chicago!
Bunkie I am sorry you don't have Cheesecake factory where you live now. I am going to the one in Beverly Hills tonight, because Gatsby is playing in Beverly Hills. Also I never go to the Valley.
xoxo,
Kate
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Hi ya'll
Yippee! B-Days:))) Thanks for all the birthday wishes and cake! oh my the cake...crumbs..and icing...all over my face! I love that the longest days start in summer so more time to celebrate...right Kate!
Met my refrigerator kayaking party girls on Friday!Hubby book tickets to a band and dance Friday night (fun and exercise) Yesterday was play, dinner out, and an evening poolside under the big moon with friends. And today out for dinner and dancing again and tomorrow back to the lake for lunch and kayaking...moonlite pantoon boat ride... so looks like this new decade is starting out just fine! Oh, need to do Walburg with the full moon...outside barn dancing...Austrian country band...yoddles...bunny hop&chicken dance...it is a hoot...and chinese tourist snapping shots ha! only in TX!
Kate...we rock summer BDays! looking forward to yours too:)
Oh, my sister sent this box with the cutest thing...Wickedly Good Cupcakes to go...yum! She saw it on Shark Tank...my 1st sugar hi! my Avatar
Hugs to you all...will take some time to check up!Janis Glad the shots worked and you have some relief and confidence to move forward with the abulation.
April - ugh rads impacting your breathing...very frightening...not sure what can be done post rads, but see the RO ASAP!Ok, time to go get cleaned up and ready to rock...theres an indoor sky diving thing...like in Denver...want to get some girls together to dive...it is so fun...you can only fall on the floor ha!
(((Hugs)
Cindy
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Have a call into the RO cause this seems to be getting worse. It is certainly not getting any better and I am exhausted from struggling to catch a deep breath since late Fri night. I get one deep one every hour or two and that is it. My head is pounding too. My pulse ox was high enough so they know that I am getting enough oxygen to my brain and body parts, so it is not an extreme emergency in that sense (unless of course you are me and trying so hard to catch a breath and can't which makes me panic and begin shallow breathing and panic all over again like a vicious cycle) so my only option is to wait until tomorrow or head back to the ER. I did not go to Yale for the ER visit as I live almost an hour from there so I went to my local hospital ER on Friday at midnight. They were nice and they were thorough and it seemed their main concern was that I was not throwing a clot so they did do all tests. Nothing showed up. But, they could see that I was/am struggling to breathe deeply and recommended I follow up. The pooh poohed the idea of it being from the rads OR the Aromasin (doc said he looked it up and did not find aromasin to have that side effect and I told him that my package insert sure did list it but I did not bring that as when I left the house, I was gasping for air and scared to death/ I offered to scan ane email it to him if he wanted but he did not answer me)
Honestly, after all the testing, they chalked it up to a panic attack. It is NOT a panic attack (have had those before years ago) and it has not abated since it first happened and in fact has worsened a little. I thought at first it had come on suddenly, but hind sight is 20-20 and the other day at work, I was giving a workshop and I sounded winded and my breathing was labored until I slowed down and turned on the AC in the room (central was on but we have a back up cause it does not work well in that room so we have a back up wall unit) thinking it was too hot in there. It did not help and I struggled through the speaking for that.
I am so afraid. I am praying this is NOT permanent and that I won't need oxygen or an inhaler or steroids forever. I know that some rad induced lung issues get better in time. I hope that is me!
Anyone who is considering rads for DCIS, please know that although it is the standard of care, with the small risk I had without rads, if I had it to do over, I would have opted out knowing what I know now. Consult Dr. Lagios in SF and listen to his reasoning. Wish I had.
That is all. I am so tired. It took forever to type this so going to lie down for a while before I have to test my cat's blood sugar before his evening shot. I feel like my life has taken a left turn this year and I can't find the main road anymore. I am generally a very positive person but how much bullshit is one family supposed to have to be dealt before it ends?
I know there are people in worse situtations and I am so sorry for all of you if my pity party sounds selfish. I am just really down right now. Really in a bad bad place.
Hugs to all. You deserve to be healthy and happy. We all do. Take care of yourselves to the max. xoxo
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April,
Of course you are not being selfish, and of course you can vent. It sounds very frightening, but I am sure you will be ok. Say that to yourself. "This is very scary, but I will be ok". I hope they take care of this soon. If you don't see me on for a while I will be in your pocket, and thinking about you. It is my birthday Tuesday, and my first celebration is tonight with the movie Gatsby and Cheesecake factory. I am leaving soon, but I will check back tonight to see that you are doing ok.
Cindy, I am so glad you are rocking your birthday. You are a princess now so enjoy! and enjoy!
xoxo,
Kate
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April, didn't you say it's getting worse? Please go back to the ER. This is no way to spend a whole, long, night. I don't understand why they let you leave in the first place. I also don't understand how, In the time it took them to do all those tests, they couldn't figure out that this wasn't a panic attack.
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April - drive to the Yale ER! Trouble breathing is not to be taken lightly...have hubby drive and take your rad records...be assertitive...you deserve good care and being be to breathe...so Yale ER tonight! Hurry full moon means busy ER
Kate - Party...red carpet...move star girlie girl! Do something crazy fun:) make tem sing Happy Birthday and wear your tiara
))
(((Hugs)))
Cindy0 -
Hi all. I'm doing a "drive-by" to wish Cindy a belated....I have company staying...but then I saw April's post when skimming through. April, I am thinking about you and hoping that you feel better very quickly. Please take care of yourself.
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April I read something awhile back about rads complications and lung pain. That article said that you will think you are having a heart attack for certain. The shortness of breath sounds pretty miserable though. You likely have some sort of inflammatory process going on, and it surprises me that they didn't at least give you something to alleviate the symptoms. Did they try a neb treatment or anything? I can't believe they would send you away like that. If you are feeling too miserable tonight, get another opinion okay? You shouldn't have to go hour after hour suffering like that. Please keep us posted, okay?
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Cindy it sounds like you are having a spectacular birthday. Good for you girl! Just keep celebrating!
Kate, you enjoy tonight. I want to know what you think of Gatsby!! Did you see the first one with Redford. Waiting for your review and my pineapple upside down cheesecake.
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April. I found this online. You have probably already seen it.
When radiation treatments include the chest area, the lungs can be affected. One early change is a decrease in the levels of surfactant, the substance that helps keep the air passages open. This keeps the lungs from fully expanding, and may cause shortness of breath or cough. These symptoms are sometimes treated with steroids.
Radiation pneumonitis is inflammation of the lungs caused by radiation treatment. It’s linked to radiation treatment to the chest or breast. It may occur from about 6 weeks to up to 6 months after completing external radiation therapy. The risk of developing it depends on the radiation dose, the amount of lung tissue in the treatment field, whether you had radiation in the past, and whether you are getting chemo at the same time. It’s also more likely if you have other lung diseases, like COPD. With treatment, most people recover from radiation pneumonitis without any lasting effects.
Common symptoms include:
- Shortness of breath that usually gets worse with exercise
- Chest pain, which is often worse when taking in a deep breath
- Cough
- Pink-tinged sputum
- Low-grade fever
- Weakness
In some cases, no symptoms are noticed, and radiation pneumonitis is found on a chest x-ray.
Radiation pneumonitis is treated by trying to decrease the inflammation. Steroids, like prednisone, are usually used. It usually gets better with treatment. But if it goes untreated or persists, it can lead to pulmonary fibrosis (stiffening or scarring of the lungs). When this happens, the lungs can no longer fully inflate and take in air. If a large area of the lungs is treated with radiation, these changes can cause shortness of breath and less tolerance for physical activity.
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April, what GiGiL posted looks like news you can use. I join the hope that you'll go back to the ER tonight (or have already gone), either Yale or the local one, and get someone to take it more seriously as a post-rads or Aromasin issue. Either one is much more plausible than a continuous panic attack for days on end, so good riddance to that theory. Even as you take action, I also second what Kate said: Say to yourself, "This is very scary, but I will be ok." Good luck and please do let us know how you're doing when you get a chance.
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Thanks ladies. It has gotten a little better and I will be following up with my RO today and my MO too in case it is from the Aromasin. The fact that it has gotten a little bit better since Friday, and the fact that I stopped Aromasin, tells me it could be this and now that it is out of my body, it is getting a little better. I am still not breathing my normal way though. Still not able to grab many deep breaths so I am going to get to the bottom of this for sure. I don't smoke anymore but a good friend told me that she had some issues after quitting and that it can happen from quitting smoking so that is another possibility. I just know that I need to know what happened and why and what to do about it. It is so very hard to not be able to breathe deeply. Scared me to death. Right now, just this morning is the best it has been since Fri night and I can catch a deep breath like every 10-15 mins now where before it would be an hour or two before I could catch one.
I was treated with a nebulizer at the ER Gigil. They did everything right at Middlesex Hospital. They did a chest x-ray, a CT Scan, EKG etc to check for all of the important things like congestive heart failure, blood clot etc. They did all they could. They kept me there for 5.5 hours and checked my vitals every 15 minutes. My pulse ox was between 96 and 100 which is full saturation so my oxygen was fine. I just could not catch a breath. I understand why they think it is a panic attack. I would think the same thing if I were them.
Anyway, today I call all the docs. The RO and MO will hear from me and we shall see if they have any insight into what is happening. The fact that I am a little better this morning tells me that aromasin was possibly the culprit and it took a few days to leave my body. Who knows? We shall see. Will keep you posted.
Thanks for all the advice/well wishes.
Cindy, Happy belated Birthday chica!
Kate, hope you have a great time this birthday week too! You deserve it!
I will keep you all posted. Hoping it is not rads induced as I am thinking that would likely be more permanent than aromasin induced. Either way, just want to know!
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I'm so happy you posted early--have been waiting. I think you know you need to do more than call these guys--please be sure to insert yourself right into their offices. Yes, your clients are important, but you just can't see them if they'll need to see you struggle for breath. Some things get better by themselves. Others need to be treated, and treated early, and until this thing is identified, you don't know which it is. Did your local ER consult with an RO and a pulmonologist?
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