Early Stage Natural Girls!
Comments
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NYCmom, sounds like a plan. Have you been tested for BRCA? It seems like that would be important info to have.
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Apparenty I tested negative for all of the genetics that they know of.
I had my first raditation today. I still haven't looked at my Frankenboob yet to see if it's red. I hear it takes a while for the skin to get icky but I'll be on it with my calendula anyway. I nearly had a nervous breakdown though, and the social worker was a gem. She helped a lot, since I've been feeling quite alone in my treatment (moreso because I'm against the tamoxifen, but hubby doesn't even pretend to agree with me on my alternative ideas - even if they're crazy! Let me have them and not feel pressured to go the western route). At this point, she and I both agree that I should come alone. I actually told him to go home on the way there but he refused. I really wanted him to go away. I think he's afraid of losing control, and of me deciding to not go through treatment after all. I guess. Or maybe just feeling helpless.
Does anyone know if nausea could be a side effect of radiation? Again, I'm sure it's in my head right now, only 1 treatment in. I'm also exhausted but am sure that's a mental game - my brain is taxed from all of this! I want to be done already. Or have more sane cures available.
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nycmom I felt similar to you during radiation, I was against it and hated the idea of putting it in my body. My Doc at the time really pushed it and scared me into it as the only way.
So I had to come to terms with it some how, god how i hated the gowns and feeling like a helpless person with your all your stuff hanging out every which way! I have an aloe vera plant that i pulled a leaf from every morning before radiation and applied it right after each session. Your skin seems to burn from the inside out, so getting a jump on it really helped me heal up faster afterward. My Doc said i had the best recovery he had seen and was interested in what i had been doing. i also used a trial of a lotion that was made just for radiation-from Germany i think. The docs office gave it to me to try out and it was great_big bonus it had natural ingredients!! I think one radiation could just be making you sick from all of the mental anguish. I also told myself to think of the radiation as medicine, not poison, meant only to kill the bad cancer cells. The mind is powerful, so try someway to get a positive angle on it . I agree on the more sane cures!!! I was/am in disbelief that thisis the best we have in year 2013, it felt barbaric and outdated to me too.
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Well, 3 days in, and I started back at my old day job yesterday. I go first thing in the morning, then go to work. Today, my supervisor asked when I would "make up my hours". I was shocked! It's not like I'm going to the spa or something... so I'm losing about 5 hours a week and am already tired from it (whether it's the stress or the radiation this early, though I'm known to react very quickly to medication since I'm not used to it!). So I'm not trying to get over, but really? Is there some legal way to protect myself? Otherwise, maybe I should go back on medical leave but that pay is so low, and it seems ridiculous to me to not work because of 5 hours. She asked if I could skip lunch every day to make up for it. Um, really???
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My elbow is all swelled up from, I'm assuming, my LE. The thing is that I haven't done anything do aggravate it. Does anyone know if the flu can aggravate LE? I was flat out for a week and just laid around except the 4 hours I sat at a desk for another 2 weeks. Now my elbow looks like it's dislocated the way it's swollen up and it's really sore. :-(
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NYC that is infuriating! I don't know off the top of my head but there must be something that can be done. I don't know if this would work but I went on FMLA when I had chemo, and what I did was I worked every other week. The week of chemo I did not work. I had to use my sick time and then my pto time if I wanted paid, but I could have also not got paid. But the point of fmla was that my job was protected and I didn't have to completely off work. I do know of someone who uses fmla to have one day off per week (or maybe its every 2 weeks), so I would think you could use that for 5 hours just so you don't have it hanging over your head to make it up. Screw that working thru lunch! This is a time you should be taking care of yourself and eating healthy, not sqeezing it in because you have no break! Not to mention from what I hear the rads can make you really exhausted over time so 5 hours is the LEAST they should give you. Wtf is wrong with her!!
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I don't think it is legal for them to not have you take lunch. Years ago I had a dentist appointment and told my boss I would go during my lunch hour. She said "Absolutely not, the law says you have to have a lunch break." I went at another time and did not lose any pay.
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NYCMOM - I used my FMLA for 20 of my 40 hours a week for several months. It took some finagaling, but we got it through. Your legal rights often depend on the size of the company and often the state in which you reside. Some are federal and some are state. Your supervisor sounds like a real peach. Is there a HR dept. you can consult? I find many mid-managers are woefully under trained under HR poicy and law.
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Was your FMLA unpaid? That's what I've been told, but I'm going to try and meet with the head of HR who deals with all of this stuff. Wish me luck. Also, the radiation is starting to make my breast increadibly warm and a little uncomfortable. Put 3 coats of aloe on tonight, helped to cool it a little. As if we all didn't have enough going on, for someone to get petty about a few hours a week is just insane. She's a very unhappy person, obviously. Unfortunately we share an office, which should not be allowed!!!
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Ncmom...omaz, another member on this board developed her own treatment plan for rads which apparently helped a lot. Her radiologist uses it now, I think. I sent it to a friend whoe sister has IBC and is getting rads now. It isn't totally natural, but it sounds like a good plan.
Also, I work part time at Macys and I spent 14 months on fmla leave and then just general leave. None of it was paid, but I didn't expect it to be since I only work a few hours a week. I am a full-time realtor. They were all great though, and it was nice they held my position.
Here is the rads treatment.
Rads Skin Care
The skin is supposed to be clean when you have the radiation treatment so be sure not to have any lotions or creams on the skin before treatment.
Directly after the radiation treatment apply Aloe Vera 100% Gel by Fruit of the Earth.
Then at about 2-3 hour intervals apply your choice of
100% Pure Emu Oil by Progressive Emu (my personal favorite!)
Faulding Essentials Vitamin E Cream (from Australia)
Miaderm
Before bed apply
Aquaphor Healing Ointment by Eucerin (rub hands together to warm it up before applying to the skin)
Use Basis Sensitive Skin Bar for washing, rinse well, and protect breast from direct shower spray, very gently pat the breast dry
It is important to avoid skin on skin contact during treatment because it can cause the skin to ‘break down’. To protect my skin I wore a very soft close-fitting lightweight cotton tank top each day. I wrapped it all the way over and under the breasts so there was no skin on skin contact especially where the breast ‘hangs down’. It also came all the way up to the base of the armpit area. I bought a bra that was larger and looser than normal. I then wore my bra over the tank top and was careful to flatten out the fabric folds inside the bra. I actually had several tank tops since they would absorb the extra cream/oil and I could change them as needed. I washed them in hot water and fragrance free detergent to remove the residue.
When you apply the cream or oil be sure to goop it in liberally and be sure to apply it to all the areas being treated with radiation. You can ask your radiation oncologist to show you which areas of skin will be in the treatment area. Be sure to include the area on your side under the arm.
During treatment my nipple area got sensitive and I used cortisone cream on that area at the recommendation of my rad onc and that helped. -
My FMLA was unpaid. It kicked in after my short-term disabiity ran out. Later, after my diagnosis, I was going to go FMLA during my surgery and radiation, but it would ony have been for 3 months and it was determined that with my other health issues, I would need at least 6 months. I considered trying the 3 months but am glad I didn't. My job was sooooo stressful on a regular basis. Sitting around thinking about what I would go back to after I'd been gone 3 months would have made being off even more stressful than being at work. I actually believe that the stress from my job caused my cancer to manifest itself years before it would have without all the stress. I would have probably been in my 60's before I got it like my mom. I had been telling my DH and the docs that something was wrong for at least 5 years (beyond my pancreatic issues), but the tests were always "borderine" or "low normal." I kept telling them my job was killing me, and it was. The doctors said my cancer had been growing 5-7 years. What a coincidence.
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Does anyone know if the flu can aggravate LE?
MiniIt is my understanding that acute illness can flare our LE. Double up on your water, MLD and elevating the arm. Are you seeing a lymphedema therapist ?
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Fluffqueen, I wish I had time after treatment to hang, but my job is giving me a hard time about time, so I literally get dressed and run to work. But I take care of it when I get home at night.
Unfortunately I'm not in much of a position after the long work hiatus to take any unpaid leave. I also work freelance and that was completely squashed, of course - and that's my main income. The day job is more for insurance, but right now I need the paychecks to at least try and tread water while I get the other work back in line.
I do find the aloe gel helpful and soothing - I put it on at night and let it air as much as possible but sometimes it's late, since my daughter needs me (and I need her too, I need to feel like I'm living my normal life!) I've been using calendula spray as well, the doc thinks a lot of calendula, and it's a liquid so I can spray, let it dry and spray again and again. It's really healing stuff, I think!
I've heard someone else say Aquaphor, but isn't that a big petroleum based product? If it works I might do it anyway, though I'm not a fan of petroleum. We also have a tin of bag balm, which is also petroleum. Would that work as well? It's so sticky! Is the aquaphor less sticky?
Also, I use Creme De La Mer at night on my face, started when my daughter had her first surgery and it made her scars disappear overnight, and I've found that it stopped my face from aging (for 11 years now, it's really working for my skin!) so last night I dabbed some on and let it air well. It's expensive, but if it saves my skin, of course it's worth it. And it's only for 5 more weeks.I don't have a nipple, so that's one less worry! And that one was very sensitive, especially in bad ways, so it's s bizarre relief that I don't have to worry about it.
You mention a shirt under a bra, but that's hard for me to get away with for work etc. I've been wearing these stretchy bras that are basically nylon. Maybe I can find a very thin piece of cloth to drape over the area, maybe I can even bring some sort of cream like aquaphor and deal with it at work so I don't get docked for time in caring for my skin? I could just drape the cloth over it and put the nylon bra on top. Hmmmmm, thanks for the ideas! Very helpful!
Mini1, I think also that my time off was stressful. Money wise, but also just worrying about going back and if I'd get a hard time about things that are important to my treatment. It's really only one person, unfortunately my supervisor. I'm going to make it work as best I can and just be thankful that she's only my supervisor, and not my spouse or child or someone that I care about on a deep level. Everyone else at work has been amazing and it's good to be back, even though I'm exhausted!
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NYC - you must take the Aloe Vera with you for your treatments and apply it immediately after. It only takes a minute. I'm sorry your workplace is giving you a hard time.
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Hey NYCMom,
I had radiation (to breast only) 30 sessions with additional boosting, final treatment late november 2011. My skin did cope remarkably good, no sore nipple. Of course I could see a difference (in the shape of a quadrant) where they beamed. It never became red red though, only pinkish. After a while like a suntan. Today you can't see the difference. Even the leopardy spots I had under the breast (cause I forgot to put cream there, whoopii) are gone since two months :-) I used aloe vera gel (pleeeease choose the organic one and be nice to your system), iiih just the smell of it reminds me of the changing booth at the radiation department..I alternated between sweet almond oil and coconut oil actually. The latter I used when the breast felt sore; it was greasier and so easier to smudge on. I covered the area with light cotton tanks; but usually walked around half naked when I was home. After the last session, my rads doc gave me a cream I was to put on 5 days in a row without washing it off. In the end it was a thick layer but when I finally got it all off (took a couple of days), my breast looked awesome! It was based on zinc oxyde. I was (and am) very careful about what docs want me to take, but this cream worked wonders. Don't use petroleum based creams pleeeeaaaase! Horrible invention that is. Actually, my docs & I agreed at one point (halleluja); the simpler the better! Calendula, coconut, sweet almond, aloe vera gel...I never tried the emu oil but I heard it's supposed to be great. Since about six months, I use rose oil which is supposed to help regenerate skin and help with the scarring. It smells wonderful and is very nice to massage the breast with. I got fibrosis though (still have it a little bit); but massaging with oils did make it better!
Anyway, I also experienced nausea (the docs and nurses said is was strange, but hey, what do they know about how radiation affects everyone of us?) especially after sessions for about 45 minutes to 1 hour. I was usually in the metro by then and felt yukky & warm. The first sessions I had my chin down, and when I told my nurse that I felt strange in the throat, like dry, she said 'You should keep your chin up during sessions, hasn't anyone told you that?' 'Eeeehh, well no....aren't you supposed to tell me all of this?' The soreness in the throat went away after keeping my chin up for the rest of the sessions :-) The tiredness & strange stomach were the two biggest SE's from what I experienced.
I've also become a fan of the sporty stretchy bras in cotton since surgery and rads, soooo comfortable. I didn't have big boobies to begin with so I don't need megasupport. The cool thing is that my husband loves them! He's a cotton kind of guy, so that's perfect :-D
Mini,
I noticed that if I sit around too much and don't move around, my arm starts hurting and feels bigger, just like my belly and face can get bloated if I cheat on exercizing or eat too much salt. I guess circulation is very important in order to avoid LE. I'm so sorry for your elbow and hope it will work out fine. I'm still scared of it, even had a nightmare the other night where my index swelled up all red like in a cartoon! I had the flu the other month and my arm felt so stiff, so I agree one should be wary about falling ill.
Take care!
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SuzieQ, it seems so sticky so I'll have to figure out how to keep it from making a mess. I hate that I now have to stress about every minute because of my supervisor. And, before surgery, I was generally early for work every day and never asked for anything, just showed up because it happened that way, that's who I am. You'd think she'd cut me a break, right?
I also love coconut oil, so that's a good idea as well. What about vitamin c serums that are made for the face?
I feel like my immune system is not what it was going though the radiation, in addition to everything else. Is it because of the stress, or is it more directly related to radiation? I'm taking massive vitamins and trying my best, lots of water etc.
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Don't worry about the stickiness - just put your clothes on - the skin will absorb it. Make sure you keep it cold too.
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Carola31 - The swelling has gone down in my upper arm, as has the soreness in my armpit area and chest. My elbow is still a little tender, but nothing ike it was. I've been massaging it and trying to be good to it. You're probably right. Lying around would probably allow the fluid to accumulate more easily, and even though I try not to, I tend to lie on that side once I fall asleep. I just thought it was weird that it was my inner elbow of all places. Usually, it's my upper arm or chest area.
Has anyone that just had radiation (not chemo) had difficuty with wound healing in other areas? I didn't know if it could be related to the radiation or if I have a new issue going on. I see the doc on the 17th and will ask him, but thought someone may have experienced this. I figure it doesn't hurt to ask.
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Mini, I'm only having radiation and feel like my immune system is not what it should be, only a week in. I wouldn't be surprised though, our bodies have to instinctively fight this new invader, so other stuff gets put off.
SuzieQ, thanks. I may cut up some old tee shirts and use them as a liner so I don't have to worry about anything seeping through and staining my clothes just in case.
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Mini, my rad onc told me that rads can give your blood counts a dip. So it may be that your white blood count is down. I also found that it took a good six months to get back to some sort of real normal. I felt fine, but lotsof little things were off for quite a while. Eating carefully helps, especially make sure to get enough protein. Try to get some exercise and fresh air.
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NYC - pop over to the rads forum and you will get excellent advice there.
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NycMom,
Well, I guess it's an accumulation of everything we go through that brings the fatigue on, and radiation is a part of it. It's so strange to me how docs can say how rads don't really make you tired (ok, I agree it's nothing compared to chemo but nevertheless!), did they go through it? This is what others had told me before rads & what worked for me; even if you feel tired you should move around; i'm not suggesting aerobics classes ;-) But going for walks is so beneficial, clears your mind at the same time it lets your body breathe. Radiation is toxic, so we have to get it out of our systems in order to feel good right? I also ate a lot of protein to not lose muscle; radiation therapy can apparently do that to you (or so my onc says). I also used olive oil in foods for the vitamin E and limiting free radicals. I know there are many who advise against eating that kind of food, including certain veggies and fruit, cause apparently the therapy would be less effective, but everyone should decide for themselves. I wanted to protect my 'healthy' cells..and not feel like crap more than I had too. A mistake I did make though, was to not take the vitamins prescribed for me after treatment, as all those my rads doc wanted me to take contained soy protein isolate and I simply couldn't find any supplements that didn't. I'm not sure to 100% that's why I developed light lungfibrosis, but apparently it is more common when you also have had chemo. On the other hand I laid all my energy on getting my vitamins through food, maybe not enough though!
Mini,
I'm happy the LE seems to resolve! I had a teeny weeny bit of LE in the area where armpit and torso meet (hmmm, hope you understand!), you know when you have a bra and the LE side is a tad 'fattier'. My PT said so, but a lot of exercises under her supervision made it go away :-)
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Thanks. Boy, the more I read about side effects, the more I think I shouldn't be doing this stuff at all!
What if I only do 10 or 15 treatments? I know it's a question for my docs (that they won't like!) but, has anyone done that or considered it? It seems it would help increase chances of non-recurrence somewhat, even if it's not what they really want it to be. I'm just trying to think of scenarios if it gets to be too much. I really have no idea how I'll get through 5 more weeks of this! Thanks to everyone, I really appreciate your thoughts and advice. It's nice to hear things from other patients instead of more doctors. I'm sure you know what I mean, and why most of us are here!
Also wanted to add: I have tiny little "pin pricks" in my radiated breast. Is this my nerves firing? Obviously I only feel it at the edge, where I still have "me" instead of the stupid expander! It makes sense, but is it nerves just acting up, or is it more related to the radiation? Anyone have this experience?
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I also thought like that when everything got too much, that I had the possibilty to stop. It's a comfort to play with the thought that one could quit, noone is making you go through with it. Then again, it's certainly possible that it helps against recurrence, but not 100% sure. What is? I spent a lot of time compromising with my rads doc, for example I accepted radiation but only to the breast and that the duration of treatment would be standard, 6 and not 8 weeks like he had suggested, and said no to the weekly control xrays of the breast as well as mammographies to this day (I don't care if I'm a pain in the ***
). I said yes to boosting which I somewhat regret today, but hey, it's easy to have hindsight right? When the nurse wanted to tattoo me I said no. And she didn't. When I told my rads doc I was worried about secondary cancers induced by RT he so delicately explained that I was so young (30 at the time) that I would surely have another cancer when I get older, not necessarily radiation induced..Whereas I told him he was lucky I was in a good mood that day.I discussed every feeling and decision with my husband, it was a real help to run my ideas by him so he could say if I was making sense or not. Sometimes fear and anger could make me think in strange ways. My docs said I was a fool for saying no to for ex Tamoxifen, but it is my body, and so my decision. As long as you don't get stubborn in the wrong way, as long as you listen to what they have to say, get informed and THEN decide.
About the pin pricks, could it be both RT and nerve endings? My breastarea, armpit and the back of my arm were stinging (not all at once though) several months and still are from time to time; and that's supposed to be 'good pain', as nerves eventually do grow back, and that apparently is why you feel the prickling sensations, or so my darling surgeon explained it. I'm thinking RT makes everything so much more sensitive. It's so hard to say..
All my best to you.
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I had had the pricking sensations when I lung surgery. My surgeon told me it was the nerves regenerating.
I've been just 6 months out of radiation. I eat very carefully due to issues with my pancreas. I'm gluten-free and I eat organic & hormone-free whenever possible - HF chicken, a little fish, and occasionally HF beef. I eat very little processed food. I eat a low fat, high complex carb diet. I'm actually too thin and need to gain about 10-15lbs, but that won't happen on this diet. It's just weird. Apparently I cut my leg scratching it in my sleep. It is taking forever to heal. Plus when I put neosporin and a bandaid on it, I actually got like a blood blister the shape of the bandaid. So now I try to keep it clean and dry without a bandaid. I've never had this issue before.
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Carola, thanks. I'm usually a pain in the ass about everything, but it's really more about taking control of your care. Boosting is when they give you a zinger one day to reduce treatment duration long term? We talked about it since I'm already over this whole ordeal and have to travel for business near the end of treatment. But he said that he wouldn't advise due to the health of the skin.
My husband is GREAT but he is so afraid of anything that is not doctor recommended. Oh my gosh - the tamoxifen freaks me out! Guess what my radiologist and breast surgeon both say? If it sucks, stop. That is the BEST answer any doc could ever give. Same with radiology. I'm 6 treatments in. They want me to go to 27. We'll see. But I like that they don't give me crap about it. They want me to get as close as I can while not freaking out. Besides day one, I've been fine.
I'm sure it's nerves. Just weird. I've had them since surgery, on and off. Man, I'd love to get feeling back. The other day my husband bumped into "it" and I had no clue until he apologized and asked if I was ok. Though the other day it was "pushed" in one direction and the skin around it felt super creepy.
On lymphedema now - I don't have it, but I fly a lot for work and have to get on a plane in a couple of weeks for a short flight. And in a month or two there is a possibility of a VERY long flight. So I talked to my doc's nurse about a sleeve. She sent me info on quite a few different places and none are in network for my insurance. Went online and looked. Measured and I'm definitley a small regular. The class is the only question. But I'm thinking I'm SO pressed for time, nobody is close, I'd have to go during work hours which is already a pain (my supervisor wants me to make up my radiation hours even though I go first thing in the morning and come right away to work, can you imagine???) Is it stupid to do it on my own? If I don't, I may not get it in time for my first flight coming up. And it's only a precaution, but I'd rather have it than not!
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NYCmom, since you are in NYC, go to Falk Surgical, upper eastside. The ladies there are super about finding the right size and gear for you. You need a sleeve AND a gauntlet.
I would also urge you to see a PT who deals with breast cancer patients. Lymph and scar massage is excellent natural and holistic treatment that helps cure the spirit as well. The PT can also advise you about the sleeves etc.
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NYCMom, I'm really sorry you have such an incomprehensive supervisor..
About boosting; 'A Little Extra At The End of Radiation' http://breastcancer.about.com/od/radiationtherapy/f/radiation-boost.htm
I got a class 2 compression sleeve, but I'm a flight attendant on long haul, and will spend bout 8 hours in a pressurized cabin when I resume flying. No gauntlet was prescribed for me, nor did I ask for one (had tumerectomy and 6 nodes taken away); I can't wear one to work anyway so..I've tested the sleeve on 2,5 h flights quite often, and it works very well. I agree with Momine, go and see professionals; the measurements are very important. I lost a lot of muscle during radiation therapy so my sleeve, which was made prior to RT, didn't stop 'falling down'. I was in a hurry too (although in France mostly everything is covered by insurance, lucky us. Then again you're in New York
), so I said it was really urgent that I have my sleeve quickly, and they were very understanding. If you're pressed, maybe do both, go see a PT and as a precaution order one online? I thought it was going to be this huge thingy, but actually it's just like the compressive pantyhouse I already wear to work, so no big deal; but you got to have one when flying. You had your surgery recently didn't you? -
I ditched the drugs. Some people think I"m crazy but the SE's are scary. I tried 2 AI's and reacted horribly. I know some women take them with no problems, but there is a reason why the average time a patient stops taking the drugs after 2 years. I think it's absurd that Tamox is on the ACS's own list of known carcinagens 3 times!
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Mormine, FALK! Yes! It was the ONLY place that takes my insurance, and I loved them! Got measured Wednesday. Since I'm a performer, I asked if they had anything cuter than the usual flesh colored thing - which looks very medical to me. I'd hate to be on stage and have to wear it (not planning on it but it could happen, especially a show after a long flight) so they ordered me 2 sets - a black set, and a fancy floral one from Lymphedivas! I had actually looked online when I thought I might not be covered for it so I had a pattern picked out already!
They were all so lovely there, Jeanette is a doll, if anyone ends up going there!Carola - I'm going into work tomorrow so I can take off Wednesday. I contacted my acupuncturist who will see me right after radiation! And then I can have my day to go food shopping, maybe hit the gym (though I'm so tired!), and maybe sleep!? Though that's really difficult for me these days. My brain runs way too fast and hard.
I've also heard that you NEED a gauntlet or glove. I don't know why they sell them without - why it's not even one piece, but I guess it's the option for either (the glove felt yucky to me, and I guess sizing is easier if you have separates). My surgery was Oct. 24. There was a lot of arguing between pathology and my breast doc, which is why radiation took so long. I wish it hadn't, but it is what it is. I'm 10 treatments down, and was getting REALLY burnt. I used my Creme De La Mer and it totally cleared it up. It's so expensive but I have been using it for 10 years since my daughter's surgery (her scars disappeared in a day, and I had a jar... and when I stopped using it on my face it was awful! I started to age, hah!) The aloe was too sticky and the calendula was weak. I got a different calendula cream today and also a silver ointment, both are soothing, but the La Mer is what is saving my skin. 17 more treatments to go. It's tiring me out but my appetite is back. I think it was more nerves than the actual treatment.
Hoping to get my lymph garments soon - I fly in 3 weeks for a gig. It's only to Toronto, but I fly in the morning, spend all day in soundcheck and concert, and then fly home the following morning. No time to rest! They said bring the garments in case I feel puffy.
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- 285 Who or What Inspires You?
- 28.7K Not Diagnosed But Concerned
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- 586 Alternative Medicine
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- 50 Immunotherapy - Before, During, and After
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- 109 Welcome to Breastcancer.org
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