Radiation recovery
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Sorry that was just the link to the picture
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Thanks Josie. I thought that was you in the picture with your new haircut......
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Hi, I am on day 12 of 33 days of radiation treatment. and....I don't feel good. I read that 9 of 10 people experience fatigue, but then I read some posts and nobody has symptoms. I feel ok in the am, by 2pm I am finished and by 4pm I feel sick like i have a cold or something and am super tire. All I want to do right now is go home and go to bed.Anyone else experience fatigue? I am a little nervous as I would like to take some time off work to go home and sleep, like a day or two hear and there, or leave a couple hours early...but don't want to seem like I can't handle something I should.
I am truely tired!
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Beachw3....don't feel bad, you are definitely NOT alone. Each of us have had different reactions to radiation and yours is quite normal. I also had severe fatigue issues so I can relate to your feelings. Mine would hit like a ton of bricks and at times it felt like I wouldn't be able to walk across the room. I think taking some time off here and there would be a great idea for you. Or working part time if you can. Or even go on disability for the duration of treatment if that's possible. It's important during this time to listen to your body. You are not being a wimp. Your body is fighting off the effects of cancer, surgery and radiation being thrown at it and it's doing a great job, just leaving you feeling like a wet rag.
I will suggest that you try a few tricks most of us found helpful for getting thru rads: drink LOTS of fluids, eat LOTS of protein daily (70 to 90 grams), exercise at whatever level you can, even a simple walk to the mailbox or up the street a ways is helpful, and get the rest you need. I know the exercise sounds counter-intuitive when you feel totally spent already, but some gentle exercise really does help. Not the housecleaning type of exercise but something for you, like walking. It is good for your mental health too.
Good luck and don't feel like a failure, you're over 1/3rd there and you will get thru this. I'm sure others here on the thread will have words of wisdom and encouragement, and be sure to check in often.....we are your light at the end of a very long tunnel.
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mostelysew...thank you so much! hearing your experience is so helpful....now knowing that it is just me makes me feel so much better...i was wondering if i should change my appointment to later in the day because it seems like i feel really bad for several hours right after treatment especially....did you experience that?Thanks for the hint on the fluids, excersie and protein....I didn't know about the protein and usually eat more veges and fruits than meat....
I will take your advise....thanks again for the encouragement!!!! Just what I needed!!!! will keep in touch
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beach - good advice from Sew - as usual. I had 33 RADS treatments and I always scheduled mine as the first appointment of the day. I just didn't want to be in waiting all day for my appointment. Also, I worked the night shift so the earlier the appointment the better for me. I did take some time off though because my job was very intense and a lot of pressure plus my job was a hike from our house.
I was tired. My ONC said I would feel the fatigue halfway through the treatments. She was right but other than fatigue and a little burning I had no real issues. Everyone is different.
You truly have been through a lot. Give yourself a break and time to heal.
Diane
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Beachw3, I'm glad I was helpful. It does sound like moving your appointments to later in the day would work better for you. You can then go right home and take a nap to refresh yourself. Get your hubby or kids or maybe even friends to make some meals for you so you don't have that issue hanging over your head. Most of us don't want to give in and ask for help, but it's totally acceptable to do this. And I think you will find that family and friends are more than happy to help as they generally feel helpless during all this and it gives them something to do. And yes, I also generally felt totally wiped out in the afternoons. You may actually find that your body adjusts to all this onslaught of radiation and you end up with less fatigue than you're feeling now.
I'm a vegetarian and to get my protein up during rads I changed to Greek yogurt (19grams per serving and tastes the same) and drank whey protein drinks. And ate nuts...as a treat. And sometimes those protein bars but be careful of the sugar in them...you don't need sugar at this point.
Hope this helps some...
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Beachw3, I experienced some pretty standard fatigue and I had the (very) shortened course of rads ( 5 days, 2x a day for ten total sessions) but they were at higher amounts per session. By the 4th day, I was dragging pretty bad and for a couple of weeks after I finished as well. Then slowly, my energy came back. I agree with your idea of doing yours at the end of the day from what you describe.
I had my first session at 7:30am and had to wait a minimum of 6 hours in between. I went to work after the first session and then my second session was at 1:30pm. Then I went home for the day. So, in essence, I worked 5 hours from 8-1 for those 5 days. I work in a non profit and sit at a desk so my week is a 35 hour week (7 hours a day) so only took two hours off per day. Worked out for me. I worked shorter days and still completed my rads as scheduled.
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Hi. I was prescribed 33 days of rads. On Tuesday I needed 8 more treatments. I just started crying because I am in so much pain. they took me to the dr who gave me two days off but only a pain med and some cooling pads. she says she's afraid of my skin being sensitive. I now have blisters and the area under my boob is raw and split open. My boob is crazy swollen and I am an emotional mess.... I just don't honestly think I can do it anymore. OH yesterday I insisted they call something in for me. I got silvadene cream. It was great for the blistering... the raw part is just as sore.. Anyone ever just stop before the end of their treatment? i feel like a quitter but I just can't do it... I can't.0
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Hi Tami,
You've been thru alot and unfortunately seem to have drawn the straw that makes your skin super sensitive to the rads. I can relate to that. I'm glad you got the Docs to give you the silver sulfadene as I think you'll find that helps. I ended up going thru 3 different prescriptions of varying stronger drugs to get my skin to heal enough to get thru rads. I ended up having to take a break 2 different times and I was so very disappointed, as you are, because I just wanted it to be done. That said, I did find that the break was enough to get me thru more days of rads, so you might feel very much better by Monday. Also, I expect the last 5 days of your rads will be what they call the boost days, and the rads don't seem quite so intense during those days. They concentrate on the original tumor bed and don't seem to do the whole breast or something, at least that's what I remember.
Suggestions to help you get thru would be.....what are you using for creams? I strongly recommend Calendula Cream by Biron.. It's a healing ointment which helped with my burns tremendously. Keep up with your hydration and extra protein as that will help you face all this. As to the raw skin under that boob, several women on here have had the same problems. I used a pounce made of cornstarch to keep the area dry in between using the sulfadene, and pure aloe gel and the calendula cream. That regime got me thru the end of this.
As to stopping early, everyone has to do what they feel is right for them. No one here is going to tell you you're wrong to quit. You know your body best. We will cheer you on no matter what you decide. Be sure to talk all this over with your RO and the nurse. If by Monday you're still having as many problems they may well have something else they can prescribe for you.
Good Luck
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Thanks April4965 and Mostlysew...think I will schedule mine for 3 in the afternoon and go home and rest. that way i will only be taking off 1.5-2 hours a day.
I also eat right after and feel really nauseous...anyone else have the feeling. I had mine at 11:45 and right now is the worst time. I just feel like I can't sit at my desk and need to go home. I did yesterday and laid in bed from about 3-5 and was fine. Think I am going to talk to my boss today.
I appreciate your support!
any ideas about the nauseous feeling (sorry for spelling)
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beachw3 I felt nauseous and dizzy, fatigue is common. We are all different. Stay hydrated. I at a lot of fruit and nuts during rads. I also to advil and that helped the nausea and the dizziness. Not the fatigue. I did walk a lot during rads and slept a good bit to.
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Does anyone have an iso added when they receive radiation. It looks like a plain panel. I'm going to ask the radiologist onc. when I see her but I am curious now.
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Tami, please do have a nice long sitdown with your RO about how to move forward. Maybe with a longer break, you will be able to complete rads. The problem with quitting early is that you have not necessarily received enough zaps to obliterate any leftover bad cells. Your RO has lots of tricks and techniques that he or she only pulls out of the hat when absolutely necessary. Seems to me, you're right about at that absolutely necessary point.
Do ask about boosts to the tumor bed. As these are very localized, the rest of your breast can begin to recover while these are ongoing. In my case, boosts were very welcome, as that area was not where I was reaching my tolerance level for tenderness.
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I just popped in to say a quick hello. I have been busy with travel, family, grandkids. Life has definitely not been boring. My husband's 52 year old sister died in February. It was a complete shock for all of us. They have four siblings, now they are three. We are not sure about cause of death. It looks to be COPD, heart disease ( a result of smoking since she was a young teen), osteoporosis, and prescription pain meds. It has not been an easy winter. In the last four winters, we have lost both of my parents, and now his sister. Two days ago a dear, old friend of ours died while scuba diving. Life feels a bit out of control
I hope you are doing well. I read back a little to see some old friends are still here and offering good advice to the new people coming here for help. Good to catch up a little. I will try to check in more often. Love, GiGi
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Gigi - good to hear from you. Last few weeks have been a bit quiet with our group.
Sorry about your SIL. She was too young even for someone who smoked. My DS' friend lost his aunt at 40. She smoked a lot but drank a lot too every day and that ultimately took her life. My mother had COPD but not until she was 80. She smoked too a few every day. Sounds like she was dealing with other medical issues too.
Its fun spending time with our grandchildren. Love them and send them home to their parents. Haha! DH and I are living our time with DS' twin boys. They are 8 months old and so cute!
I'm spending time doing yard work. Love all the greenery and flowers but it's exhausting. Weather is in the 80s here.
Annual Fair on the Square in my town this weekend. Love it! Our town was voted the best small town in America. Well deserved.
Another wedding next month in Louisville, Ky. Hope we can still make this one. Missed out on the last one in Chicago because of twins births.
Spring festival at church generated a lot of $. They raffled off a 2016 Honda. Didn't win darn it. Weather started out cold but finally warmed up. Our booth - ND Club of Memphis - did okay. Sold a lot of shirts and cup holders.
Next month is mammo appointment. Let the anxiety begin. My 5 years is up in August.
Do check on again Gigi. Missing all the ladies in our group. Hope everyone is doing okay.
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Diane I am 5 years out as of tomorrow. I need to get in for my mammo as well, I get the jitters just thinking about it. Life sounds busy for you these days - a good kind of busy. Enjoy those grand kiddos. Twin boys, 8 months old! Wow., that must be a force to be reckoned with. I have seven grandkids ranging from 25 yearsto 28 months. They are my favorite people to spend time with. We can hold each other's hands and walk boldly into those mammo centers. It will never be easy, will it?
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GiGi, Congrats on your 5 years! Whohoo...that's a real milestone marker. I'm so sorry about your sister-in-law. The death of a family member is always hard and she was so young. It sounds as though all your house moves last year were worth the effort, now you've got time to just enjoy and have family close by......
And speaking of 5 year celebrations.....I will be at 5 years on Arimidex in the fall and when talking with my MO this month, he says there's a new tumor marker test which can help them identify the cancers which have more potential for causing a recurrence of the BC and therefore identify those who should potentially take the AI's longer than 5 years. They look for a protein marker of some sort. He says the test has only been available for a year and they don' t use it in every case. He recommends I have the test. I, of course, said yes since for me more knowledge is better. Apparently they store our tumors for 10 years so it is still available. Anyway, I gather that this fall I will have the test to help me decide whether it's necessary to continue this drug. There are down sides of that of course (more osteoporosis and more joint pain) but I'm willing to put up with that if I can stave off a potential recurrence. Has anyone heard/done this test?
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Yea for you too Gigi! You have reached a milestone. Seems like longer than 5 years to me. Let's do hold hands. I don't think I will ever be anxiety-free when it's mammo time ever again. I was nervous even before my DX. Btw I'm the poster person for worrying. Surprise? Not.
We do enjoy our grandchildren. We actually have 12 - 8 boys and 4 girls. The ages range from 20 to 8 months. We get to see the twins more often than the others and yes they are a handful!
Sew- you are closing in on your milestone. Yes I have heard of that test and in fact I know someone who had the test. Her BS - coincidentally mine too - and her ONC decided she needs to stay on Arimidex for another 5 years based on the results of that test. I totally agree osteoporsis and joint pain I can and do live with and a small price to pay compared with the risk of a recurrence. My friend was upset that her score was high. I told her to look at it like an extended insurance policy. My ONC had already told me Tamoxifen ends in August.
Have a good weekend everyone! It's raining like crazy here.
Diane
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hi Diane, thanks for the info. But yikes girl, your friends test results sure do make this whole thing real
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Hi to all. I'm new to this thread and 8 days post rads (rad boost to tumor bed during 2/16 surgery, then 28 whole breast rads.) I felt a little fatigued the last 10 days of rads but it seems the fatigue is REALLY setting in the week after. Today, I've been dragging. I convinced myself I was turning the corner yesterday and probably overdid the activity level because now I'm officially a couch lump! Also, my surgical site is swollen and tender, another sign that I overdid things yesterday.
My RO told me fatigue would worsen for about a week after rads, then start to get better. Is that your experience? I've read some of your posts and can't get an exact read on when post-rad ladies started feeling fatigue improvement. I've been lucky in that I had no open sores nor skin problems. My redness faded amazingly fast and it's less than half as dark as the last rad day. But the magnitude of the fatigue is something this high-energy gal wasn't prepared for.
Please let me know when you hit your fatigue 'turning point' and started feeling better. I need a bit of encouragement as I lay here on my couch
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Sunnyone, welcome,
Most of us felt that same fatigue your feeling. Some worse than others. I can remember going to the grocery store in the middle of Rads and got the feeling that the register was way too far away as I stood at the back of the store feeling as ty Hough someone had just attached 2 10# weights to my legs. But this this too shall pass . It's important to not give in to the fatigue and try to lightly exercise if you can. Even a walk around the neighborhood counts too.Everyone is individually affected and it can only be estimated how long it lasts. Sometimes I think it's not just the Rads that causes the fatigue it's maybe our bodies way of dealing with all of what we just went through.
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hi Sunnyone,
I think you're right on track for what most of us felt. The first week after rads you're still running on euphoria that it's all over, and the sheer determination that it took to get thru this. The 2nd week you mentally start to realize that active treatment is done and your body seems to take a big breath and hollers for some "me" time...hence your couch potato feeling. I'm sure you won't spend the week on the couch, you will feel better and better, but by all means, let your body take the time it needs to heal. Drink lots of water and eat lots of protein too...it can help. it's also normal in my opinion to suffer some "did too much yesterday" days for months after rads. They will hit you less frequently, but may well continue for several months after rads. I've decided that all these feelings are normal.....
Also don't be surprised if you end up introspective at some point. My mind changes happened about a month to 2 months after rads where I was finally able to do my old routines, but I realized they didn't really suit me any more and I made some changes. A few of us feel that we go thru a type of PTSD after this treatment and that causes us to sit back and relook at how we are handling our lives.
So..welcome to the "other side". You've made it. Congratulations.
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Hi Josie, How're you doing? You've been quiet, so I'm hoping all is well.....
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Hi Sew, I'm doing well. I've been enjoying my new job but today was told of a mistake I made. It wasn't by my Doctor but anouther co owner Doctor of the practice. She was very nice about it but it threw me for a loop. Next time her and her MA are off for the day and They send their patients phone calls to me I will just let her MA decide the type of appointment she needed and when.I have been having to help in laws with my disabled brother in law lately. My mother in law had her knee replaced in the beginning of April and we have had the first 2 weekends like 8 hour days over there caring for Matt. Well after getting the ok from the doctor she promptly cancelled my as shift tonight as I was on the way over to her house.
I was taken a back for sure. Since Wednsday we had to call 911 for her because her blood pressure dropped so low. She was transported to the hospital where they promptly discovered she was clearly dehydrated. And after fluids and all other tests were negative she was released. And now is cured???What ever. She is so stubborn and we really gave up a lot to make sure they had help with Mat. Matt cannot really walk steadily and you have to literally put your arm at him and help him stand up. He has knocked me off balance before just trying to move him in his wheelchair.
She going to end up falling with him if she not careful. It worries me.
My daughter is still living there at there house but has been working a lot and we have been dog sitting a lot too on top of everything.
Gigil so sorry to hear of your SIL death. My condolences. I'm glad you checked in.Missed you.
SEW , Diane, Brookside and ever one else missed you too.
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Josie, it seems you still have your hands completely full. All the extra stress of caring for your brother in law and your mother in law is hard on you. It sounds like your mistake at work was an honest one, and next time you'll know what they want done. Of course, no 2 cases are the same so letting the other MA decide the level of treatment necessary is a good idea. Hopefully you can get some rest this weekend. Your mother in law sounds like one strong lady. It sounds like your daughter has gotten back on her feet and hopefully has successfully ditched that boy friend. You get to watch the pup which is fun and tiring all the same. Thanks for letting us know how you are doing.....
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Good to hear from you Josie. I second what Sew said we all make mistakes at work and in general haha. My X boss at FedEx decided to point out mine in front of the whole department. Classy? Not. I let him know that too. I'm not that thin skinned but at least tell me in private.
Your MIL does sound like a strong lady. I think I have mentioned before that I have a special needs nephew. He has CP but not confined to a wheelchair. He is really big - over 6 ft and I'm 5'3 so it's quite the challenge to walk with him. That's really sweet of you to help out with him.
It is scary for my friend Sew and unnerving for us too. The thing is she had a very aggressive BC and had a double MX so maybe not so surprising she has to keep taking Arimidex. Still with my other friend's BC metastasizing to her hip and now this I am nervous about it hitting way too close to home.
I will be a certifiable basket case by the time I have my mammo in May.
Sunny one - my ONC told me I would feel the fatigue halfway through my 33 Rads treatments and advised me not to fight it but rest when I could. I was blessed withmy treatments in that I had little burning and while I was tired I was able to sleep after the treatments. I had them first thing in the morning and I worked nights. I did drink a lot of liquids and walked too and that helped too. At least you are done with treatments. Yea!
Diane
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Welcome, Sunnyone. When I was first diagnosed, I was absolutely stunned by all the information I needed to process, and by all the decisions I needed to make. Three years later, I am happy with every step of my process, except for one: After rads, rather than chill out and let my mind, body, and spirit do their healing thing in peace, I insisted on leaping right back into real life. Actually, I did stay on disability throughout rads and for one month afterwards, but then went back to a very stressful sales career. As a result, my fatigue and PTSD just hung on and on. I tried meds (ritalin for energy, something for anxiety), but nothing seemed to have any effect. Looking back, I wish I'd put my body, rather than my clients, first.
Please do not worry about the fatigue. It is perfectly normal. To be more specific, whatever your level of fatigue, it is perfectly normal for YOU. If you have to opportunity to drop out of some activities for a while, please do. For the past several months, you and your surgery/rads/AI/immune system have been singularly focused on your cancer. Now it is time to transition to caring for you, your lovely, healing, self.
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So nice to hear from you, Gigil, Josie, Edwards,and Sew. I confess I have been rather absent, but do hope to be a bit better behaved.
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