Anyone getting ready to start Radiation in Fall 2016?
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Morning all! Hope everyone is doing well and enjoying having a day off radiation. I love weekends even more while going through these treatments
. Seraphima sorry to hear you continue to get silence on things like skincare and lyphemdema prevention - everyone is here for you!
I've had 14 out of 21 and doing well - breast area pinkish but not too bad, and the worst thing for me is my decolletage area is all spotty and itchy - my RO said areas that been sunburnt before tend to fare worse. I've been using eucerin 2 - 3 times a day and some cortisone and aloe.
I'm not too tired, and I think that having my hospital 10 minutes from my work is certainly helping - it was such great timing as I've just started this new job and any previous job would have meant significant travel including navigating city traffic. My appts are at 7:45am so I'm at work by 8:15 generally. I haven't taken any time off work so far and this new job is really full on, so I did put a 'medical leave' day in my calendar for the day after my last treatment where I plan to sleep in, chill out, and pamper myself!
Have a lovely weekend ladies!!
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Thanks, Josieg,
It's more helpful coming from you all. I think I'm more upset on principle. I was at the surgeon's yesterday, and this sweet older lady came out and was chatting to me. She just had breast surgery last January, and they drained a painful seroma in June. She was back in terrible pain, but they told her it needed to "fill up" or it would be pointless to drain it (though it would relieve her pain) so sent her home, untreated, to suffer for four more months. She was steeling herself to deal with the pain.
I'm not knowledgeable enough to say anything, but that seems wrong, wrong, WRONG to me. And that was the surgeon's office, nit the RO. The same surgeon who knew nothing about cording and brushed off all the pain I was having, saying it would eventually go away someday.
I'd never have known about the pillow I made myself if not for the internet either. I was thinking of making them to give away for cancer patients, but this ... Ah it all upsets me. Not everyone goes online for help. You guys are great though.
Thanks!
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What kind of pillow did you make?
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Glad it is the weekend for a 2 day break! Finished my 5th of 33 on Friday. I get whirly headed (dizzy / light headed) a lot now. I am trying so hard to keep hydrated with drinking a lot of water. I wake up during the night now and if I do, I take a drink of water. My radiated skin is sensitive (especially the nipple) already and I feel a burning feel deep inside. I do not use deodorant on that side and that says a lot for me. I have always been paranoid about smelling, especially since I am someone who has a super sensitive sense of smell. I smell things most people do not and it is a curse. I use aloe vera, a prescription RX, and calendula. I mix it all together so I do not have to slather multiple things on me (just one and done!)
How are others doing?
How far into radiation are you now?
Any tips you would give to others at this point?
Josieg, you give me hope! I am still working (although not full time hours and mostly from home). I drive a good bit to my radiation treatments too.
Hope all of you are doing well. *sips another drink of water* Stay hydrated everyone!
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Hi, IHGJAnn,
It was kind of like this one. http://store.mastectomydesigns.com/breast-cancer-c...
Or actually, I made several, and adjusted a bit. I had a lot of pain and swelling under the arm, and just stopped wearing them a couple of days ago, so got my use from them. Also used to support remaining breast tissue when lying down, and to keep seatbelt off - I should put them in the car now for that.
I read they were often given away to cancer patients, but no one here does that. I did adjust online instructions, and found a very lightly stuffed pillow much more comfortable than a firm one.
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Wow, i didn't know they had these... I've been using my round neck pillow and it has helped.. the one that is advertised on tv.
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Serenity... my RO said antioxidants were okay in foods and a multi-vitamin, but not to take large quantities of any during radiation because free radicals is how radiation works. Here is an explanation
http://www.breastcancer.org/treatment/radiation/ty...
I think I may take them after radiation is finished, as it seems they have many benefits! I'm going to look into the availability of a supplement instead of all those prunes which could prove to be a problem lol...
-Keelt
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seriously... 7 prunes A DAY? I had my 7 prunes last night and.. Well... I never want to see a prune again. I wonder if your body gets used to it over time. Not sure I want to test it out. Are there prune pills
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ClarkBlue - I've been eating about 3 prunes a day since chemo with no issues. Going to 7 prunes would be less than 100g that at most contains 15% DV of vitamin A, 1% DV of vitamin C, and no vitamin E. So far I've eaten 4 in a day. I started when I read how good they are for our bones. Because I'm really short, I tend to take less than any suggested serving amount/dosage.
I don't take a multivitamin or eat much fortified foods so I'm not likely to consume too much antioxidants. My MO and RO are OK with my supplements (melatonin, vitamin D, magnesium, and B complex/B12). I've also avoided green and white tea.
Myra - Oh, boy! 0 to 7 prunes might be a shock to the system! I should have added a warning. I have eaten 4 at once, but I usually add a few walnuts for protein. If you're up to it, try 3 with other foods.
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lol, I got prunes today after reading. I ate two so far. I don't think 7 a day is happening. Maybe up to 4?
I'm also interested in adding melatonin, but I'm likely on my own.
What's the problem with green tea? A lady brought me some at Church today, wants me to drink two cups a day. I figured I'd do it just because she's so dear, but if I shouldn't ...
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I think the neck pillows would work as well. I considered one, but since I made my own, it was very cheap just to make them. And I can also sew ribbons into the seams to tie them on with, and have it be more secure than those added after.
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Hi, everyone, I will start RT soon but I don't know the exact date. The RO is not a very communicative person and she sent me to the PS to get the TE first. Since I don't want getting it damaged, I decided for the reconstruction after therapy. Well, I called the RO on Monday last week and she decided to order a CT to evaluate the "state of things"? Anyway, I have two rules and if she can't follow them, I will walk out. No rad on armpits and no tattoos. I don't want lymphedema and I will fight with anyone about that. Since Medicare doesn't cover lymphedema, I cannot let it develop under any circumstances. I still have to work full time until June 30 next year and I need my right arm and hand. I told her about no tattoos on my first visit to her on July 12. I will repeat it on my next which I don't know the date yet. Even if I feel uncomfortable with a male RO I will prefer him to her unless he is as arid as her. The center give gowns for treatment but the first times, the measuring and the molding, I guess I cannot fight against taking my shirt off until I get frozen. Some friends who have undergone RT before told me about a RT center who treats persons as persons and not as objects although the equipment is not as new. I will change place if don't like the way they treat me. I don't want to take RT but I had some lymph nodes tinted on the MRI. Since I had a full right MX and hormone therapy, the added percentage of survival is 6%. But the nodes keep me back on the RT road which I don't like. I am preparing some very soft bras to deal with rad cause my PS wants me to wear one 24/7 until reconstruction. I want hypofragmentation and if they do not accept, I will stop RT when they burn my skin. I have so many aches and pain with this foot fractures that I cannot handle anymore.
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Hi, everyone, I will start RT soon but I don't know the exact date. The RO is not a very communicative person and she sent me to the PS to get the TE first. Since I don't want getting it damaged, I decided for the reconstruction after therapy. Well, I called the RO on Monday last week and she decided to order a CT to evaluate the "state of things"? Anyway, I have two rules and if she can't follow them, I will walk out. No rad on armpits and no tattoos. I don't want lymphedema and I will fight with anyone about that. Since Medicare doesn't cover lymphedema, I cannot let it develop under any circumstances. I still have to work full time until June 30 next year and I need my right arm and hand. I told her about no tattoos on my first visit to her on July 12. I will repeat it on my next which I don't know the date yet. Even if I feel uncomfortable with a male RO I will prefer him to her unless he is as arid as her. The center give gowns for treatment but the first times, the measuring and the molding, I guess I cannot fight against taking my shirt off until I get frozen. Some friends who have undergone RT before told me about a RT center who treats persons as persons and not as objects although the equipment is not as new. I will change place if don't like the way they treat me. I don't want to take RT but I had some lymph nodes tinted on the MRI. Since I had a full right MX and hormone therapy, the added percentage of survival is 6%. But the nodes keep me back on the RT road which I don't like. I am preparing some very soft bras to deal with rad cause my PS wants me to wear one 24/7 until reconstruction. I want hypofragmentation and if they do not accept, I will stop RT when they burn my skin. I have so many aches and pain with this foot fractures that I cannot handle anymore.
Sepharima, the pillows are for?
Why can't I take antioxidants? I need my cells to repair after tx.
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Seraphima, I had to give up sewing, my back would spasm and hurt so bad, i just couldn't do it anymore, glad you are able.. sewing is fun and i enjoyed it when i was able to..
Mariangel43 , the antioxidants neutralize the radiation... the radiation puts out free radicals. i guess if they're natural in the food, they don't have the same effect?I see my RO thursday, and tomorrow I am seeing my MO.. just want to get some kind of plan going...
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Hello Mariangel,
The pillows are mostly to keep the arm off the side/breast after surgery. I've used them to keep things in place so I could sleep on my side. With a painful seroma they were a lifesaver. And actually it feels like it might be coming back, so I may not be done with them. They can also keep the seatbelt off surgery site. And it's nice to hold across a large incision if coughing or sneezing. I read about them online, and just made my own since no one was making them for cancer patients here.
IHGJAnn, I do like to sew, but don't get to do that much of it. These pillows are so simple, they almost don't qualify. Just a few minutes on the machine, then stuff and stitch closed. Working out a pattern that fit me and suitable fabrics took more time than anything else. I'm sorry to hear about your back.
I hope you are able to find some relief. 0 -
Hi ladies, I'm on #11/30, third of the way through already, it's going pretty fast. My skin is holding up pretty well, I have a spot near my collar bone that is a little irritated, I think it's from my seatbelt, my nipple is pretty sensitive and one side of my breast just a little bit pink. Not bad at all...so far. A little bit of fatigue some days, but I'm not sure if it's rads related or not. I'm going on my lunch hour, working full time and it has not been an issue so far. I have upped my water intake and only using Aquaphor (that stuff is greasy/messy). The techs have all been great, they get me in and out of there pretty fast. My RO showed me my plan on the computer, it was interesting to see, with the breath holding, its not hitting my heart at all and just a bit of my lung.
Best wishes to you all!
Kelly
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LifeAloft: Glad to hear you are doing well 11 days into it. I just finished 6 of 33 today and I feel like I have so much to go.
I am trying to go braless as much as possible. I did not even wear a bra to RADS today. I just had a zip up hoodie over my tshirt...and let me tell you, I probably looked funny because it is hot as heck here in the South. I saw the plan of my RADS today. It was interesting and a little strange looking because it was looking mainly at it from a birds eye view of things. Here are a few items I have that I hope help me with this part of the journey:
I have a pillow http://moonlightpillows.com/order-online/ (I originally bought this for after my biopsy and after surgery recovery)
A seat belt cover https://www.amazon.com/Mastectomy-Lumpectomy-Pillow-Surgery-Breast/dp/B00LZWE5EO and another seat belt cover that my daughter made me (with memory foam) because I wanted something different. I am hoping my daughter makes me a few other things with the memory foam too
I also got this (for if the under side of my breast becomes irritated by skin on skin contact https://www.amazon.com/gp/product/B00OQQYD6Q/ref=oh_aui_detailpage_o00_s00?ie=UTF8&th=1 (it was suggested on another thread on this website).0 -
Hi Ladies,
Just finished my last chemo on Friday and have my Radiotherapy simulation a week today. I am nervous about this. Not sure why as chemo has to be much worse than anything else. I have refused tattoos and am being marked with marker pen instead and I have only 3 weeks rads on whole breast and then 4 booster treatments on area tumour was present. I am confused as to why some people are doing 6 weeks RADS and others just 4. Anyone know why that is?
Dolly
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If you are about to start rads or in process and you are large-breasted and/or have sensitive or light skin you might want to ask your RO about Cool Magic Hydrogel Sheet Dressing.
I had significant burning/peeling/pain under my breast which caused me to have to take a few days off from treatment to let it heal. These sheets when applied and kept on 24/7 healed the area beautifully. I only wish I had been given them when the redness under the breast began. I ordered them from the manufacturer so I can keep using them until I finish and after until I'm 100%.
http://www.mpmmedicalinc.com/productdetails.aspx?p...
I used the 6 x 8 placed under the breast and kept in place with a soft loose athletic bra.
They're pricey but so worth it. No messy creams, soothing, antiseptic and healing.
Good luck ladies..
Marcella
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LifeAloft, my dermatologist took me off the calendula cream and aloe today. RO gave me plain old Cetaphil instead. They said Aquaphor is too greasy and hard to get off. So if you want something different, try Cetaphil.
I have something my dermatologist has never seen: radiation induced subacute cutaneous lupus! We already knew I had the SCLE, but she's never seenradiation bring on a flare, until now. Lucky me.
10/30 today, 1/3 done.
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LoveMyVizsla, thanks for the tip, I'll try that! Starting to get a little itchy tonight
. Sorry to hear about your flare up, I hope you can get it under control0 -
Serenity - we are taking the same supplements lol. Glad you are staying away from the teas, and the levels of A, E and C you are saying are in prunes certainly don't seem to be threatening to radiation...so why are prunes so important here? From the research I read it was because they were a major antioxidant... if that's true, what is the vitamin/substance that's in them that is so helpful? I'd like to find a pill versus eating all of those prunes hahaha
-Keel
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Hi, ladies, back tonight. I am having a very painful arm tonight, not knowing why. I think I am backing off the RT now. I was called by the hospital phone on Friday late but they left no message. I thought it was related to RT and called back the RT center. True. They were calling me to tell me that my health insurance plan has approved the specialized CT scan that is required by this center. Then she told me that the 10% deductible fee was $1,267.14. I said "WHAT? Is that the total cost or deductible?" She said, "The deductible..." I said the girl, is that required? She said yes. I said then, "OK, then you tell the RO to erase me from the list because I won't stop paying my house, food and debts for two to three months to pay one study. Better still, give me an appointment to tell her myself, but just get me off." The poor secretary told me, "Wait, there are other options. Maybe we can collect some donations to pay it." I told her I will go to the center on Wednesday to discuss these options. Now I am more reluctant than ever in having RT. Maybe the center is the best in technological advances but low on human sensitivity and care. They are more preoccupied with protocols than with people. I will check on two other more places. I first need to be sure that I don't need RT with the MX and the hormone therapy. I also paid in full for the CA-125 test to see if the antigen levels have dropped. If those things worked, I will reject RT too. Is this CT as expensive in your state as here? Have all the process being so hard both financially as psychological? I am trying not to lose faith but...
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Mariangel, that sounds horrible! I'm so sorry you have to fight them while you're still fighting CA. Unfair. I hope you get your RT somehow without the CT scan.
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Mariangel I feel you! I would have been so out of luck if it wasn't for my insurance. I remember when I found out how much my nulesta shot cost during chemo - 7,000.00 for one shot. I believe my ct scan was 3.500.00. Your issue isn't really the doctor/facility, it's your insurance. Mine caps my out of pocket fee at 4,000.00 (considering my insurance has covered about 125,000.00 this year, I think 4 grand is getting off cheap and my hospital allows me to pay as little as 25.00 a month with no interest). As the secretary mentioned, you do have some options, so definitely learn more about those. Lots of foundations donate money just for this very purpose or you can set up a pmt plan for very little a month.
Why were they recommending RT if you had a MX? Were your nodes positive? If I wasn't triple negative, I would have skipped rads despite my doctors protest.
I wish you the best of luck. Dealing with the financial/insurance side of things is stressful at the best of time, but when you're dealing with cancer so much more difficult.
Sabrina
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Mariangel43, I'm having the same problem, I've been on a healthcare advantage, and the financial counselor suggested i ask for a medicare supplement plan.. I had to reschedule my next appt. because i'm on SS and won't get my check til the 3rd.. told them i just didn't have the money for another copay this month and that appt. is to tell me what my Oncotype is
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I saw the lymphedema specialist today. Such a wealth of information and she measured me now to have a starting point if things ever get to be a problem. She was happy to see that someone was being proactive about getting in to be measured from the start of radiation. I wish I had been able to get in before (today was #7 radiation) and tried to get in but there was some miscommunication with the offices.
I have had insurance problems from the start of this year (still going back and forth on my 1st MRI that was January 5th!). It is sad that people going through Cancer do not have more support during their treatments when it comes to financials and insurance. It is draw dropping what our treatments costs.
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Mariangel43, I'm so sorry you are dealing with this stress. Does your hospital have a social worker who can help with dealing with insurance, or applications for financial help? There are many funds for breast cancer patients. "The Pink Fund" is one--(if you were working and aren't working now because of treatment, they can pay bills like car payment, mortgage, electric, gas.) There are other funds also. In my state (MA), breast cancer patients of moderate income (not only very low) are eligible for medicaid, which will cover any expense your insurance doesn't. I wish we had single payer health care. It stinks to be sick and have to deal with additional stress.
I have not been told I'd need a CT as part of my radiation treatment. Could you ask your oncologist about it? (Unless your oncologist is part of the same center) If you do need it for your care, a social worker could help you appeal the insurance decision.
Most importantly, take care of yourself. Your arm needs to be evaluated. Please talk with your doctor about it.
Wishing you the best.
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Mariangel - also sorry to hear of your problems with the insurance. Mine drove me crazy for a while just calling several times a week over something that was supposed to be paid and for some reason they were not submitting it properly. But I would agree with others to check and see what options there may be. I know too many times things cost much more than they really do/should because it's going through insurance, but when it comes down to patient pay and you can't afford it, they will reduce costs. I'm not sure if they will in your case, but surely you have some options.
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And as for my rads - I saw both the oncologist and the RO yesterday. I was peeling a bit a few days after my initial treatment, but the oncologist said to ignore it, that it COULDN'T be from the rads. Of course, I still have a bit of a rash from whatever the reaction I had after the sim appt. But it is peeling more each day (I had 3rd treatment of 30 today) and today it was pinkish after the rads. Still not a word from anyone about skin care or how to deal with it. I'm slathering on lotion when I think of it, and trying to drink water, but I'm not drinking enough. I feel ok though - maybe more tired than usual a couple of times a day, but no real problems. I'm still a bit apprehensive about "how bad it can get" if I've already got minor skin symptoms though.
The tape is coming up a bit, and the lines are ONLY on the tape, not on my skin beneath. I told the techs, but they just kind of blew it off and said maybe they'd touch it up on Friday. I wonder what happens if they lose a mark completely?
I am afraid I don't have tremendous confidence in my treatment center at the moment.
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