Radiation recovery
Comments
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OMG, Josie. That's really, really scary. I can see that more exercise and positive social experiences will be helpful, but surely that's not all they recommended???????!!!!!!! Are you the wreck you're entitled to be? Has he shared this idea with any of his friends? Will he talk about it with you? I'm sending lots of prayers and hugs.
Why are dermatologists so rare? Someone I know wanted to be one, but it turns out that so many medical student want to do this, mostly because of the hours, apparently, that the residency programs take only the very top of the class. We have only one in this area and she's totally overworked. She actually has a sign on the examining room wall that requests that we please limit our issues to two or three. When the nurse comes in, he asks what you're there for, and if you mention something you didn't tell the scheduler, he is very clear that, indeed, you did not mention it, and that the doctor might or might not have time to address it. I know this sounds hearless, but I think it's just what she has to do.
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Josie, You must be frightened, but your son asked for intervention in the way he knew how and that's really good. Teen angst is so tough, because parents never really know when things are about to boil over. Good job at your school--they were on it. Of course you'll watch things closely now. By the way, I think that "getting outside" is underrated especially if you can find a team activity that includes some social interaction. With my daughter her processing delay meant no team sports, but we found swimming and wrestling to have the social and physical team benefits without the coordinated effort (too bad she is not active now.) Other clubs, like scouts or church groups?
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Josie, as an aside did you read "Ido in Autismland"? Powerful book with lots of insights.
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Joan I feel bad about your daughter's nanny. How wonderful of you to offer to help. Happy Birthday to your hubby tomorrow.
Runfree I am so sorry about your bites. I can only imagine how miserable this is for you, and I pray it gets cleared up soon .
Bunkie I am so glad you enjoyed your birthday. Catfish and carrot cake on your special day is fine.
Josie I am so sorry about your emergency with Andy. I know very little about autism, so I can't offer advice, but I pray he gets the help he needs. I am sorry that you are going through so much. You are a strong lady and you would never know it.
Joan, Runfree, Josie, Brookside and Cindy thanks so much for the support
I am feeling better today, but I had a little bit of a scare during the night. I woke up during the night totally dehydrated at the back of my throat. I drank some water and went back to bed. I woke up a second time with the same thing happening. I drank more water again. This time I slept through the rest of the night and did not get up till 9:30, and now I am ok. I have an email into doc to see why the chemo caused this, when it never happened before.
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Josie,
I hope you know I meant you are a strong lady, and by looking at you one would never know you are going through so much.
Hugs,
Kate
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Glad you're feeling pretty good, Kate, and hoping the doc will have a very simple explanation and solution for your dry throat.
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Thanks everyone for the support.I couldn't believe it myself when my husband called me.He had been trying to reach me for a while but where not allowed to answer our cell phones and
He had to find the number to my office to call.Andy is such a sweet kid and really causes no trouble at home or school.But he was really traumatized by the robbery we had in Oct of 2012.They busted in our back door and the only thing that was stolen was Andy's laptop and my husband's weed eater.I really made a big deal about how the neighbor women had always had strange men living with them and they probably saw him in his room on that computer.Well we had to keep a better shade on that window from then on.Well Andy expressed in this letter also that since the robbery he had a hard time trusting his peers and didn't want to befriend someone and invite them home because they might see his few electronics he has and possibly steal them.Well that's the kind of neighborhood we live in and you definitely wouldn't dare take your tablet or laptop outside.But it makes me so upset that he felt he couldn't come to us because he said I'm a worrier and he didn't want me to worry.I told him that's my job to worry for the family.So anyhow I can see know how isolated he must have felt.0 -
But I think they probably could have done more for us and him at the ER. Maybe I shouldn't have told them he had Autism.
Perhaps they would have been more aggressive then.I definitely did not and would not allow them to admit him.They would of had to admit me too.It would have been way to traumatic.As it was my husband just told him he was going to take him to the DR .I would have been honest with him.He doesn't like surprises.
But really they didn't tell us why they thought he was feeling this way or didn't they for sure he was depressed or that he needed counseling.They just gave us some numbers for suicide hotlines and told us if he needed to talk to someone then seek the school counselor.Now I'm not so sure he was cared for to the best of their abilities.0 -
Wow! It seems you want a nice sitdown with the school counselor, whose recommendations will surely be more appropriate than the ER's. But what a nice kid, not wanting to bother you with his worries. Maybe all he needed to hear was you telling him that it is your job to worry.
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Josie, What a sweet and simple truth it was to tell him it was your job to worry. I'm sorry he feels unsafe and tentative around people, but I'm sure he must feel you and your dh's love. Do you have a good counselor to work with?
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Josie, it must have been a terrible day. I'm sorry you don't feel confident in the care you got. I do hope you can hook up with a good psychologist, or maybe you already have one for him. And more outdoor time, and more social time, are good bets as well. I'm sure it helped his heart to hear what you said, too. You don't resent worrying, and he shouldn't keep things from you to protect you. That's so hard for kids to get sometimes.
Kate, that dehydration episode sounds like a tough time! I'm glad you were able to get through the night. I'm curious to know what the doctor says.
Sew, thanks, I did call the RO and she gave a green light to the plan. She's in contact with my MO--they're good friends and work together at my RO's other clinic--and she said she'd keep her updated. I took the first dose of prednisone today. I'm on Tamoxifen, but I went off it for a few days because we suspected it might have triggered the dermatitis on my chest. Since the triamcinolone cream worked right away, even before I missed a Tami dose--yet Tami has a several-day half-life--we've cleared Tami of the charges. So I also got the RO's OK to start Tami up again. I want the cancer-fighting properties, and I also have found lately that Tami deflates my appetite a bit, which I'm counting on to block at least some of the prednisone hunger I've been warned about. (Sure enough, after 3 days off Tami, I was hungrier today.) Josie, I think if I had scabies, others in my family would too, right? I've heard that it's very contagious. Someone said maybe dust mites, because I did seem to get a few more bites after I handled some dust from the vacuum. But who knows. We don't try hard to keep dust mites out of our bed, yet the rest of my body aside from my limbs has been untouched. Could be hives after all, just slow-spreading ones. I may have said this before--the NP thought the two rashes were likely unrelated, but I am thinking about auto-sensitivity, as the derm mentioned to my RO. So maybe something bugged my radiated skin, and my body attacked the thing and then kept reacting with vigor to any other insult, even things I normally wouldn't react to. Brookside, it is a scandal how few derms there are! I wonder why they don't loosen up just a bit on producing new ones. It's a huge problem in both VT and NH and I suspect other low-population places.
Josie, again, I'm feeling your pain for your Andy.
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Run free,
Actually no one in my family got it from me and my Aunt even slept in the same bed as me and never got it.
They treated themselves just to be on the safe side.
Thank God .It was horrible and my doctor at first thought
it was anxiety and put me on anti depressant finally enough was enough and we found a dermatologist.
Don't want to ever go through that again.
Tonight Andy stayed after for Science club and has decided to do that every Tuesday which works out perfectly since I'm off on Tuesday.
Then we took him to the park and he got to swing.
Note to self when your youngest DD decides let's play follow the leader on the playground think twice!!!lol
SHe had me going across the monkey bars and swinging on the swing and sliding down slides.Those seats were not meant for adults!!
All in all it was a good time though and we definitely got some exersise.Not to mention my parents and sister decided to come over those morning and work to get the brush out to the street.Guess who decided to stop by to inspect our progress ? The city inspector.He was impressed but then followed me into our back yard so he could see our neighbor behind us mess.I really can't stand that guy.He said he was ready to give the whole street behind us a summons for their property.He was definitely on a power trip.0 -
Josie, a late Happy Birthday to you. It sounds like you have enough to worry about without having to worry about that city inspector. Don't you wonder how some people can do a job like that? Glad you are in touch with your son and what is going on with him. He sounds like such a sweet boy. My grandson has SMA and is in a wheelchair. He also has some sort of spectrum diagnosis that no one can really put a finger on. He never gets invited to birthday parties and doesn't have close friends. He is 10, going on 11 and it makes me sad for him. He is a happy guy and doesn't seem to notice that he isn't included in things with his class. He is so cute, the girls seem to hover around him, so that is nice for him. It is tough socializing a kid who doesn't always react in an expected way. Glad he was able to ask for help in the way that was best for him. He is lucky to have parents who care and are sensitive to his needs.
Runfree you have certainly been through the mill with your skin mysteries. I hope you get it all cleared up soon.
Kate, next to the last long treatment. I am so glad to hear that the chemo is working well for you. That is very good news.
Bunkie, thinking about you and your brave struggle. I wish I were nearby so we could see a movie together. I know it would be fun.
Cindy, hope your DH is improving. Those elevated blood sugars are scary in so many ways.
My DH came back from his week long fishing trip looking like Grizzly Adams. He is blond and his whiskers are not thick, but he was way too tan with a white shiny beard starting. It didn't take him long to get that all shaved off. He looked much better when he left for his 4 day ER stint today. He seemed well rested and ready to get to work. Daughter and grand kids had a nice time and now they are back at their farm (5 hours drive from here). We had a nice time and I miss them already. Joan I know what you are feeling. It is difficult to be away from those sweet little people. Hugs to you.
Hi to everyone - Truebff, SEW, Brookside, SAB, Janis and all of you other ladies. I just bought a new appliance. A NutriBullet. Now to figure out how it works. I am hoping this will enable me to clear my counter of a few appliances. I will keep you posted.
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Josie, I too am so glad Andy found a way to let you know his thoughts, even if he didn't really think he was. I like the suggestion of working with the school counsellor, they might have ideas about activities for him which will hit his strong points. Science club sounds perfect. You know, that inspector business made me remember that my parents used to get "clean up,or burn" notices from the city yearly when we were growing up. Very embarrassing. They finally figured out the best way to avoid them was to plan a "weed bomb" fight every late spring. My brother would invite all his friends, they'd erect some sort of shelter like a table turned on its side, then wait will a day or so after it had rained, and the kids would have a huge weed bomb war. Got all the long grasses in the yard pulled and the inspector had nothing to complain about. Great fun for all of us.....
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Oh no, it finally happened to me--a long post lost in cyberspace! Hmmm. Here is the gist:
Kate: During rads my dentist gave me "Oramoist" a small patch that you put on the roof of your mouth and it helps keep your mouth moist. Maybe ask your mo about it?
Sew, that was so funny, and your parents so creative!
Josie, Hang in there, you are a good momma and got a good workout!
Gig-Ohhhhhh I heard those nutribullets were fantastic. Report back please!
Better post before the cyber-ghosts strike again!
Hugs to all.
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I am so happy to have found this forum!
My radiation tx (30+2boosts) was completed the middle of June. It was fairly uncomplicated, with the exception of the last three weeks when the radiation burns on my breast and armpit were pretty uncomfortable. But my RO started Miliplex on the burns, which helped significantly. Plus using the cream 3xday helped lessen the tightening.
Since the end of treatment I have chronic low level pain in my breast - about a 3 on a scale of 1 to 10, that is not helped by anti-inflammatories. It feels as if my muscle is being pulled down when I am not wearing a bra, and is tender and warm to the touch. My surgeon states that this is not uncommon in large breasted women and has recommended a breast reduction (something he recommended before I started radiation to prevent this, but time just did not allow). My RO says she hasn't ever heard of this kind of reaction and doesn't know if the reduction would help with the pain.
Has anyone else had similar side effects?
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I am so happy to have found this forum!
My radiation tx (30+2boosts) was completed the middle of June. It was fairly uncomplicated, with the exception of the last three weeks when the radiation burns on my breast and armpit were pretty uncomfortable. But my RO started Miliplex on the burns, which helped significantly. Plus using the cream 3xday helped lessen the tightening.
Since the end of treatment I have chronic low level pain in my breast - about a 3 on a scale of 1 to 10, that is not helped by anti-inflammatories. It feels as if my muscle is being pulled down when I am not wearing a bra, and is tender and warm to the touch. My surgeon states that this is not uncommon in large breasted women and has recommended a breast reduction (something he recommended before I started radiation to prevent this, but time just did not allow). My RO says she hasn't ever heard of this kind of reaction and doesn't know if the reduction would help with the pain.
Has anyone else had similar side effects?
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Jana, sorry to meet you this way but welcome. Lots of us have had some sort of pain or tightening. My ro made me go through four weeks of antibiotics before rads due to redness swelling and pain, calling it cellulitis. It turned out to be lymphedema. Stretching helps a lot if it's scarring,or lymphedema, as does physical therapy.
In general you will continue to see changes for a long time to come. I'm sure others will come along with their experience and advice soon.0 -
Hi Jana,
sorry to had to find us this way, but glad you have. It does sound like your radiation went just about the way most of them go, which is good. I, too, am large breasted so I know what you mean about the pulling sensation. But, in my opinion, I think you should be looked at by a really good Physical Therapist who specializes in lymphedema; one that is LANA-CLT certified. I say this because the warmth in your breast sounds just a bit like what lymphedema will do, and lots of RO's and MO's don't recognize truncal LE, only LE in the extremities. I went about a year before finally seeing one and the difference is amazing. Outside of that, I'd also recommend that you continually stretch out that arm. That means over head movements, gentle stretching and eventually light weight training (2 lbs to start). The muscles and nerves in the radiated side have a tendency to shrink up or seize up and can cause that pulling sensation. You just have to remind them of where they belong. A PT specialist can help with this part too. The trick is not to overdo any stretching or weight training as you could cause an LE flare up. I have also found than an LE bra has done wonders for my breast. They are without a doubt the ugliest expensive bra you'll ever own without a stitch of lace on them, but my oh my do they help that poor breast relax and feel good. Walking and exercise becomes comfortable again. Again, the PT therapist can arrange a referral for you to get fitted. And one last thing, recovery from radiation is always an interesting thing...remember that your breast has been thru lots, that the tissues, nerves and etc. in the poor thing have been bombarded and now they're trying to rebuild themselves. This process alone can cause some of the heat sensation and also a bit of pain. You might eventually get some really sharp, take your breath away, bad pains that only last a second or so. Those are pretty common also for up to 6 months after rads, and is caused by the nerve endings waking up, or so I believe. So, remember to continue to use lotion all the time, eat protein and drink lots of water, that will help the tissue rebuild. I'm sure other gals on here will have ideas too, and do stay with us to let us know how you're doing....Good Luck
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Oh, and Jana? My good buddy SAB is just much better at saying it all succinctly ... thanks SAB.
So, SAB, have you accepted that job offer? Did they formalize it yet? Are you waving goodbye to the end of summer? Did your DD#2 actually finish her summer assignment? Inquiring minds want to know (actually, it's just this one nosy person, but that sounded better
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I am so far behind there is now way I can catch up. Thanks to everyone who thought about me. I do know that I owe both Bunkie and Josie belated Happy Birthday's. I will get working on some cake balls for you right away! I hope you both had a wonderful day. You both deserve it.
My trip was amazing. It was difficult to come home. Adam and Jenifer live high in the mountains west of Denver. Their house sits at 9,400 feet. They have a beautiful open floor plan with amazing hardwwods and views that are impossible to describe. The living room has beautiful French doors that lead to the deck. You can see clearly Pike's Peak from their house. No matter what the temperature in Denver, it was so cool up there, usually in the low 70's. I slept better than I had in months. My bedroom was in the basement, French doors to the guest room, a bathroom right next door and full family room. The house is so gorgeous and the whole time I was there is reminded me of a place you would rent for big bucks in the summer. I finally met my "grand-dogs" Liffey and Jackson. Liffey is totally blind but what a doll! She has the sweetest most loving temperment. She is a brave girl. We went on a nice flat trail hike one day and she runs and runs. If they see impending danger they yell "easy" and she stops right away and sniffs all around to see what the danger is. Sometimes it was a boulder or a tree, but she was always safe. Jackson they got from the same rescue that started this all for us. Will, the one who recently died of cancer, and my Sampson we wdopted the same day. Later they went to get another dog and they requested a special needs dog as they have the means to do the best care ever. Then the loss of Will and now there is Jackson. Same rescue. He is a beautiful blond boy, a great contrast to Liffey's gorgeous deep red coat. He is somewhat timid but once he gets to know you he is a sweetheart. When the kids were at work I walked the dogs a couple times a day and cooked some homemade meals for Adam and Jen. They both work downtown Denver and it is a long commute so thereforee they have very long days. They loved coming home to rested dogs and a nice home cooked meal.
I am sorry I have to dash, I have a doctor appointment in a few minutes. There is so much to tell! Just had to let you know I am fine.
Love and hugs to all.
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Josie Andy is so sweet. The science club sounds perfect for him.
Runfree and Bunkie I am thinking of both of you and hope you are feeling better.
Cindy I am thinking of you and your hubby, and I pray he is doing better.
Sab thanks for letting me know about Oramoist I will ask my MO about it.
Jana Welcome
Janis I am glad you had a nice time on your trip. Adam and Jennifer's home sounds fabulous.
Brookside, Runfree, Gigil, and Sab thanks so much for the support.
My doctor was in clinic all day yesterday which means he usually doesn't get hoime till 7. He has very little time to answer emails Tues. Wed. and Fri. He has not answered my email. I think he believes that my dehydration problem was very temporary. He knows that if it would have continued I would have emailed again or even called the office. We have a good understanding of each other. He is right, my dehydration problem went away. Today as usual after a long treatment on Monday, I am queazy on Wednesday. I am hanging in because I know the chemo is shrinking the ugly cancer cells.
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Janis,
Good to hear from you. I was about to send out the dogs...search and rescue dogs! And yes, you still have lots to tell......how you feel after your ablation, how you could spend so many days away from your dogs, whether the fires threatened your house, how you were lucky enough to go visit Adam and Jen for such a nice stay, and how you're doing in general. It sounds as though you're quite renewed, which is what vacation is all about, so that's great.
Kate, glad to hear you're Ok, and the dry mouth went away. I'm sure you were just sleeping so soundly after your long chemo that you forgot to swollow, or something. Rough day today and sort of rough tomorrow if I remember right, then you're back on your feet. Good for you working thru all this treatment.
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Janis, what a wonderful trip! I am in love with your son's house and I haven't even seen it. And I want a blind dog now too.
Jana, welcome to an extremely supportive forum! I think Sew and SAB got it right. Good LE physical therapy is worth any trouble it takes to get it.
Kate, I'm sorry you were sickish today. But it's all for a great purpose, and you will probably not have much more yucky time before you start to bounce back again. And then no more long chemo until the last one!
My good news: my radiated breast looks fantastic. The nipple and areola are finally the right size and color. I think they probably were a bit puffy all summer, now that I see how good they can look. The skin is still a little red, but it's clearly on the mend. It's not brawny or leathery anymore, but thin. However, it's a bit papery and dry, so I'm going to try emu oil. Also good news, I am not wacko from the prednisone! Not extra hungry, speedy, grouchy, and I think my sleeping is going to be OK. At least so far. My legs were calm today in my meetings and it was such a relief, but by afternoon the itching was starting again, and when I got home, it all went crazy. I am afraid I scratched them quite raw. (Uh oh, I'm starting to sound like the crazy woman from "The Yellow Wallpaper"....) Cold wet towel and some aloe has helped a bit...but if they are not clearly better by tomorrow afternoon, I am supposed to call the NP back. What would come next???
Fifty years ago today, my dad got up at 3:30 am and took a bus from NJ to DC to attend the March on Washington. My mom couldn't go because she was 8 1/2 months pregnant with me. Since my dad was Mississippi-born, the civil rights struggle was very personal to him. It has been a good day to remember him.
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RunFree - That is awesome about your dad. We marched from my school to downtown. I was 11 I think. Mystery rash. Ok. Prednisone will knock it out if it is inflammation. Cut back your salt, drink lots of water, keep your sugar low and eat 6 mini meals.
Kate - I stay dehydrated. Hate it. Hope you feel better and can talk to your Dr.
Basement flooded again. We had 4 inches of rain in 2 hours. My kitchen leaked too. This house sux.
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Thank you Bunkie for the prednisone wisdom! I heard I would crave salt like mad, but I will try to stay ahead of it with the water. And I'll cut down on sugar and try to eat often. I really want this to work. It's great that you remember marching that day.
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Guess my post was lost in cyberspace.
Welcome Jana, hope you get some great advice I know you will.
Kate I hope the nausea gets better soon.
Janis nice to hear from you glad you had a nice time on your little get away.
My darned neighbor one street over got in her minivan and chased me down tonight.She was beeping her horn at me like a maniac. She saw me and the dog stopped in front of her house because the dog smelled
something and I let her stop and sniff.She said "I would appreciate it if you would not let your dog use the bathroom on my lawn" I was like I didn't let her do that.She just turned around in the middle of the street and went back home.Really???She needs to get a life.I mean who gets in their minivan and chases someone down the street?0 -
Josie, my husband is from some of the meaner streets of Boston and he reverted to his roots when we had a problem like that. A neighbor said, "I saw you let your dog take a crap on my lawn!" My husband said, "Yeah, and I saw your dog take a crap on MY lawn!" Not true, but it shut the guy up! However, if she doesn't have a dog, I guess you can't use that trick.
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Janis thank heavens you're back.everyone will be thrilled to have you and your delicious baking back. My sugar free efforts just aren't the same, even in virtual world!wow it sounds like a fantastic trip in a gorgeous house full of love!
Josie, this is why people like me live in the woods with no neighbors.
Runfree so happy to hear of your improvement.
B12 shot today. I keep waiting to feel superhuman but I'm still tire.0 -
Oh sew, I forgot to answer. I think I must have hallucinated the informal offer cuz I haven't heard from hr! Waiting.
Hey Kate, while I'm here I'm dropping off a hug for you.0
