Fall 2013 Rads

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  • 4sewwhat
    4sewwhat Member Posts: 2,093
    edited October 2013


    Just saw this at the BCO giftshop. Don't know if it would help anyone or not. Sounds soothing though!


    http://www.lindiskin.com/lindi-skin-cooler-roll

  • FierceBluebird
    FierceBluebird Member Posts: 758
    edited October 2013


    4seewwhat, that's a great idea. I plan to make my own aloe vera gel and put it in the fridge. I'll use the t-shirt/flannel idea.Thanks!


    I haven't even started rads yet and I'm, nervous and having emotional breakdowns. After 5 months of chemo and three surgeries, I'm just not ready for rads!


    Virtual Starbucks lattes all around!

  • 4sewwhat
    4sewwhat Member Posts: 2,093
    edited October 2013


    Rads is the home stretch Ladies!! The light at the end of the tunnel. And.................it really isn't the freight train we all once thought it was!


    Not sayin it doesn't suck, cuz it does! Just think of it this way................it's like an exterminator spraying for bugs just to make sure the building is completely inhabitable again!


    image



  • Bounce
    Bounce Member Posts: 574
    edited October 2013


    Hi BlueBird144


    How do you make aloe vera gel - chop off a leaf and peel it and squeeze out the mushy bit?


    Are all aloe plants OK to use or only certain species?


    How long can it last out the plant?


    A new BC buddy of mine is about to start rads tomorrow and we were talking today and I realized how nervous I am about it all too.


    I don't think its possible to start rads calmly - unless maybe with some chemical help. :-)


    My plan is to cry a lot the week before and the week after I finish and to let all the fear out! Someone had better warn my family. During rads I intend doing what some other ladies here have done - be incredibly interested in the machine and the technicalities of it all. I hope my booby doesn't mind being zapped too much.


    I think its normal to be all over the place emotionally at this point! Hang in there. Do something nice for yourself - whatever helps to get you feeling a little calmer.


    We just have to believe that everything is going to be alright.

  • cakes
    cakes Member Posts: 157
    edited October 2013


    I'm back from a holiday and trying to catch up.


    MsPharoah- I use 1% hydrocortisone with aloe in it for the red rash. You also asked about the Mepilex. I was given 2 patches from the RO nurse and do not know if it can be bought over the counter. I would ask if they have some on hand and would be so kind as to give you some. She also suggested I put the 99% aloe vera in the refrig as well as putting a damp cool cloth over the red areas. I also have a sore throat from the radiation and fatigue is just starting to affect me. This weekend I felt faint a few times but just sat still for a while and was fine.


    Take care Ladies.

  • FierceBluebird
    FierceBluebird Member Posts: 758
    edited October 2013


    Hi Bounce. I have a regular old aloe vera house plant. (Aloe barbadensis) To make the aloe gel, cut a leaf off at the bottom. Leave it tilted in an upright position in a cup with the cut end up for a few minutes until some sap drains off. (some people say the sap can be irritating so don't put it in your gel) After a few minutes, strip off the green skin along one side of the leaf. Then scoop out the aloe. Put it in a blender (or use it raw) and place it into a clean sterile jar. Add some Vitamin E oil and a pinch of Vitamin C (you can crush a tablet) to help preserve the gel. It should keep in your fridge for several weeks. You can find some videos or pictures if you google "make your own aloe vera gel".


    I'll be making some soon!

  • MsPharoah
    MsPharoah Member Posts: 1,034
    edited October 2013


    Cakes, Bluebird, and all the lovely ladies. Thank you, thank you for the suggestions. I was going to use the Aloe plant, but it smelled so bad, I just couldn't do it. A wonderful, tree hugging friend of mine gave me a plant. She keeps asking me how I am doing but since she isn't specific about how I am doing using the Aloe Plant, I don't feel like a liar when I say, "Fine, really fine". LOL


    Am using Fruit of the Earth Aloe...recommended by another kind BCO lady and it is doing well! I meant to get the Lindi products and haven't because I am feeling pretty good. So maybe I should have that on hand just in case. I think it is crazy expensive and I would rather have a pedicure.


    Hugs ladies. Keep the tips coming.


    Sandra

  • springheart
    springheart Member Posts: 8
    edited October 2013


    hi ladies,


    "Found" you all last night, and read every post. I am humbled by your courage, honesty, and humor! I have my CT planning for RAD next week assuming oncotype results say no chemo....anxiously awaiting that news.

  • Jo6202
    Jo6202 Member Posts: 372
    edited October 2013


    Springheart,


    Had my simulation and three tattoos today and also now waiting to see if I need chemo first. Ready to go if oncotype comes back low. Welcome to the group.

  • Jo6202
    Jo6202 Member Posts: 372
    edited October 2013


    Honeybair,


    Sorry you have to go through this again! It would be interesting to hear if things have changed a lot in those 12 years. I hope you get way more than 12 years this time. Blessings.

  • ItIsWhatItIs2013
    ItIsWhatItIs2013 Member Posts: 541
    edited October 2013


    bikegirl...


    I did chemo & now I'm 12/33 rads... So far, some discomfort. I have heard from many that rads is easier to endure than chemo. I personally had a really tough time with chemo. I'm only a third done, but so far I think rads is easier on my body than chemo..... The soul, however, feels worse. I feel more down days with rads & I think it's simply that I have to "think" about cancer everyday due to the everyday appointments... Try to stay upbeat!


    Lorrie


    12/33

  • rrefresca
    rrefresca Member Posts: 9
    edited October 2013


    Thanks for the encouragement ladies...Had my appt with my MO today, ended up seeing a really nice PA. Hubby came along with me and wouldn't let me breeze past the "how are you doing emotionally" questions. She was very insightful and said that sometimes this part can be more difficult than chemo- I am still recovering from the side effects of chemo, plus exhaustion and physical side effects from rads. She encouraged me to talk to fellow survivors or get in a support group. My RO told me I shouldn't be having nausea, but this PA said, ok let's see where your rad fields are- clearly my esophagus is in the field and she said that while we can see the skin changes on the outside, the damage inside our bodies is much worse, and that it is a very real side effect that if your esophagus is radiated, nausea is a real side effect. I'm a little POd that my RO said I would absolutely not have nausea.. I feel like my RO has downplayed any symptoms I might have and I don't want to feel like a weenie...so, thankful for the MO PA for validating some stuff for me.


    Another symptom I've had is vertigo/dizziness, and apparently that is due to my naturally low blood pressure. She explained that its still the chemo in my system causing issues, and just to make sure I'm super hydrated, and prescribed Zofran. When I brought up concerns about tamoxifen, which I will start in 4 weeks, she said "we aren't there yet, so let's not think about it..". When I brought up concerns that I want to lose the weight chemo made me gain, she said, "right now is not the time to try to lose weight". At the same time I understand, it's so frustrating to try to get back to normal while I feel like a fatty. I've always been very physically active and in great shape, so having her tell me it isn't important right now makes me feel vain and silly. Ugh.


    I noticed a visible change in my breast today when I was changing, some strange line across my breast. It was strikingly similar to the breast change that started this whole thing, but she dismissed it as a scar tissue related change, but she did not do a breast exam (maybe because I'm in the middle of rads?) So now I'm gonna be worried that I've got another tumor until someone tells me otherwise.


    So that's my day in a nutshell..I'm slowly learning that my life is going to be a new normal. I've heard people say it but thought since my cancer was supposed to be such a simple fix I would be exempt from any life-altering effects. How naive I've been...

  • ItIsWhatItIs2013
    ItIsWhatItIs2013 Member Posts: 541
    edited October 2013


    rrefresca...


    Thank you for posting today! I was wondering about my little bouts with nausea... It's not bad, but was wondering if it was related to my rads. I have my weekly with my RO tomorrow and will add it to my question list, but I feel the same way! My oncologists are constantly down-playing what I am feeling. As if they don't want to scare me off from completing my treatments. I'm not gonna bail, but I want it straight! & when something comes up that they say isn't treatment related, it adds another worry that I don't need!


    Sometimes, I feel like I should have sought out drs who are survivors..... So the would KNOW what we should expect & not just what the text books said.


    I hope for better days for us all SOON!


    Lorrie

  • rrefresca
    rrefresca Member Posts: 9
    edited October 2013


    Lori, I just noticed that you and I have almost the exact history- dx dates, treatment start dates so close- and plus you are from OR! My family is still in Corvallis/Monroe. You are so right, it would be amazing to have a dr who had actually been through the treatment instead of just prescribing it for years on end. There is such a difference between talking to someone who has been through it vs talking to the prescribing doc. Not to say they are not trying their best to prepare us, but you only really know once you've been through it...


    Hope your RO appt goes well tomorrow. Don't be afraid to mention your symptoms even if they said you shouldn't have them!!!

  • ItIsWhatItIs2013
    ItIsWhatItIs2013 Member Posts: 541
    edited October 2013


    I'm in Salem..... Not too far from your family rrefresca...


    I'll let you know what she says... I'm also concerned about lymphodema ... I've been feeling "twinges" in my arm since rads started... :(


    We'll see..... Take care!

  • honeybair
    honeybair Member Posts: 746
    edited October 2013


    Had my first session yesterday afternoon and beforehand took a tranquilizer as advised by the RO. If you have any sense of modesty which most of us do, you can check that out at the door. When I entered the tomography treatment room, two males were there, one older, one very young. As advised previously by the nurse, I had on two gowns, one put on from the front and one put on from the back to keep me warm. George, the older tech, seemed surprised by this so I had to remove both gowns and put on one from the front open to the back...all with the audience of both men. Then I lay down and no surprise, the gown had to come down in front. I know they have seen it all in this profession. Still, I just felt vulnerable. Also have to place both arms above my head for the duration and am so uncomfortable. Both visits for this treatment have made me cry afterward. What is there about this that stimulates such powerful emotions? Thank God for the tranquilizers I intend to take before each visit.

  • FierceBluebird
    FierceBluebird Member Posts: 758
    edited October 2013


    I am so happy to read this topic because I've been feeling all these emotions and I haven't even started yet! I think my anxiety stems from not recovering from chemo then undergoing surgery so quickly. I've had two more surgeries and now will be starting rads and don't feel "ready" at all. Of course you can never be ready, but I feel like I'm about to get thrown in front of the train yet again. I hope my radiologist will be willing to prescribe some anti-anxiety meds.


    ItisWhatitIs hit the nail on the head mentioning how your soul feels. It's just so overwhelming to have to go to appointments every day. I'm only in the planning stages and feel the stress.


    And honeybair, I know exactly what your saying about modesty. I feel like a freak show since having a botched mastectomy and damaged flap. To be displayed with people coming in and out of the room all while your freezing and uncomfortably stretched into awkward positions is humiliating. I can't get over the feeling of being a medical specimen instead of a human being.


    But to end on a positive note, I'm enjoying the fall weather finally. Took my new puppy Jax (a present to myself for my year of cancer treatments!) for a walk in the woods and it was wonderful! Sending light and support to all those feeling down. <3<3<3

  • MsPharoah
    MsPharoah Member Posts: 1,034
    edited October 2013


    Bluebird, No wonder you are anxious with all you have been through. Make sure you tell the radiation techs about your concerns so that they will be extra helpful.while you have your daily treatments. You'll get through this! Enjoy your puppy.


    Hugs,


    Sandra

  • honeybair
    honeybair Member Posts: 746
    edited October 2013


    Bluebird, my heart is with you. Hope you have much better days ahead, and yes, your RO will prescribe those meds. Mine actually encouraged me to take them so I would feel much less anxiety each time I go for radiation. The one I took yesterday actually helped me to sleep pain-free all night in my bed for the first time since surgery. Sleeping in my recliner saved me no doubt, but I have been longing to be able to sleep all night in my bed.


    I am so grateful for all the posts on BCO. All of you have been lifesavers.

  • Annie54
    Annie54 Member Posts: 247
    edited October 2013


    OK Ladies,


    I talked to my RO today about the number of boosts I'm getting. I thought it was 5 but then told there would be 8. Yikes! I asked her why so many and was it due to my tumor in any way (type, location etc) She said no, it was just the protocol that she used. As she explained - typically, breast cancer patients have 33 rads which are broken up into whole breast radiation and then boosts to the tumor bed/area. Some doctors do 28/5, some 27/6, some 25/8 and so on. My RO does 25/8 because that is what she was taught when going through school and she says it works well. She also likes it for me as I have larger breasts... so have more skin to burn and have trouble with - giving more boosts and less whole breast rads is less irritating to the breast skin. She said the whole breast radiation is to take care of any cells that may be "thinking" about becoming cancerous and the boosts are for the tumor area where most re-occurrences will happen if they do. Because of this, she likes to blast the tumor bed with 8 versus 5. Fine by me! Just glad to get an explanation as to why women get different number of boosts - seems to be the personal preference of the doctor.

  • MsPharoah
    MsPharoah Member Posts: 1,034
    edited October 2013


    Annie54, that is good information, thank you. I am still trying to find out why I am getting 34 rads....28 whole and 6 boosts. When I asked, I was told it was personal preference and that he was perfectly fine with me having only 5 boosts. What????? I guess radiation is a crap shoot just like surgery and chemo? And I get to spin the treatment roulette wheel every time?? I feel like there is something about my tumor that gives my oncologists the heebie jeebies and they are not telling me! So when I find out, I'll let everyone know.


    Hugs, Sandra

  • SophiaMarie
    SophiaMarie Member Posts: 352
    edited October 2013


    I'm only doing #4 today, so I can't say yet how much it helps with the burning, but I started weekly acupuncture last night and noticed that today I haven't felt any of those needle zings!

  • Bounce
    Bounce Member Posts: 574
    edited October 2013


    Here is a question I am going to ask my RO when I meet him:


    I've read the statistics and I see that the boost dose of rads does help keep cancer in the radiated breast away - especially in women under age 40 at time of treatment.


    If the surgeon removed a decent size chunk of my boob and left clean margins - what exactly is the tumor bed?***


    MsPharoah you said it:


    What????? I guess radiation is a crap shoot just like surgery and chemo? And I get to spin the treatment roulette wheel every time??


    There is so much information out there for us to read and absorb and make decisions about - it just isn't possible to do it without a degree in statistics and in medicine.


    Hell, no wonder most of us are stressed out! Maybe its just time to relinquish control to the docs and hope they know what they are talking about. Pretty hard for a control freak like me to do.


    ***Aside - said in good humor:


    As far as I understand my ol' tumor and a bit more of me is chopped up and sitting in 7 little vials in a lab somewhere! Except for some which has been sent to California for Oncotype DX testing. I have always loved California and I am glad that at least part of me gets to go there! Even if its not exactly the best part of me.

  • Annie54
    Annie54 Member Posts: 247
    edited October 2013


    Bounce - you crack me up! Especially the part about getting to go to California (but not your best part)....gotta laugh at all this - it helps a lot.


    Annie

  • Annie54
    Annie54 Member Posts: 247
    edited October 2013


    Bounce - you crack me up! Especially the part about getting to go to California (but not your best part)....gotta laugh at all this - it helps a lot.


    Annie

  • MsPharoah
    MsPharoah Member Posts: 1,034
    edited October 2013


    Bounce, what I find intriguing is the eye-rolling I get when I mention any information/fact I have read about and want to validate with my doctor. And the insistence that I "stay off the internet". What? Really? Dr. Google has great office hours and he doesn't rush me. I can access the NCCN Treatment Guidelines, NCI research papers, statistics out the wahzoo! My doctors gave me handouts with each treatment, but the internet resources (including BCO) filled in the blanks for me and were very helpful. The internet age is here and thank goodness. My mother died of breast cancer 35 years ago, and I know that she got very little information about her disease. I feel so very sad when I think about her struggle to work and care for still young children and an ailing husband. I also know that her surgeon told her he "got it all" and she had no reason to not believe him.


    I know that this discussion is off topic, but I just had to get it out.


    Sandra

  • cakes
    cakes Member Posts: 157
    edited October 2013


    MsPharoah - I also was told to stay off the internet. Information is power as far as I am concerned. There are no dumb questions and if I have a question, they better have an answer. Rave on......

  • Otterlike
    Otterlike Member Posts: 15
    edited October 2013


    Was supposed to start Monday 10/7 but delayed two to four weeks due to one of my surgical incisions from 8/28 lumpectomy and reduction getting infected and waiting for it to heal. But I should be starting by 10/21 or the next Monday. So technically I will be Fall Rads! Had my CAT scans , tattoos and my verifications already. Ready to go, if healing would just hurry up!!!

  • ItIsWhatItIs2013
    ItIsWhatItIs2013 Member Posts: 541
    edited October 2013


    good news today... They don't think I'm getting lymphedema... Just residual neuropathy from chemo and holding my arm protectively over my nuked boobie... (Is that good news?) anyway, I am relieved!


    Done with 13/33! & gonna plunk away at it! The nurse gave me a bag full of goodies today too.... These gel pads that will help draw the heat out, aquafer... Other pads... The thing is, my skin looks bad, but isn't feeling that bad... It's the inside that hurts.....? Oh we'll! I'm just glad, today, that they don't think my arm is feeling lymphedema.. That has stressed me out all day!


    I hope everyone else is doing well tonight!


    Lorrie

  • carla53
    carla53 Member Posts: 264
    edited October 2013


    Lorrie so glad to hear it's not lymphedema. I'm sure you're breathing easier now. You're almost half way done. :)


    Tomorrow is my first zap. they gave me a calendar of days and times. It ends up to be 5 1/2 weeks. I was told it was going to be 6 1/2 weeks. No complaints from me.I'll take 5 1/2


    Carla

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