Winter rads 2014-2015

kayfry

gemmafromlondon, I am also having the shorter rads protocol, so I'm super glad to hear that you've gotten through with no trouble. Yay! In my case, I think I'll be getting 4 boosts after the 15 days, but it's very reassuring to hear that you didn't have any worse effects from the slightly stronger amount of radiation. I'm very glad to be doing the treatment in a shorter amount of time.

ThinkingPositive

chrissie29, what is the reason they gave you for needing rads? I see you had mastectomy but no node involvement. Just curious as I am trying to make decision on getting radiation. Thanks and good luck to you.. hopefully the radiation won't get worse for you.

SunnySydeUp

Thanks for the warm welcome and great recommendations. I'm trying to arm myself with as much information as possible and appreciate the honest and straightforward feedback.

I've got my jar of Aquafor and bottle of aloe ready to go! I'm interested in hearing more about Aquafor vs. calendula cream. Is one greasier than the other? My rads will be in the AM and I'll be heading to work from there- would hate to show up with grease stains on my top!

Nomatterwhat

Wheelygirl, I had a BMX and still had 33 rads.  I knew the order of my treatment before it began -- surgery, chemo and then radiation.  There was no question about radiation since my cancer was close to the chest wall.  I went kicking and screaming into radiation, but I did it with little to no problems.

ThinkPositive, I have had no scans since I had the scan during surgery.  All my doctors tell me that all the cancer was remove during surgery and that chemo and radiation was a preventive measure.  I sure hope they know what they are talking about. 

JustJean, I think you supplied a wonderful service to all of us even though you had the worst case scenario experience.  Some people do good and never post or need help.  Others, need all the help they can get and without all of us posting our experiences, good or bad, we cannot help each other.  You have been a wonderful addition to this thread as well as others and I have always enjoyed reading your posts.  I hope you continue to keep us informed of your healing process.  Stay warm. 

LARock

Good evening all. Today I finished 15 of 35. So far the only thing I've noticed is some soreness in my radiated breast. No skin problems to report.

Is anyone else having 35 treatments? From what I've bern reading, this seems to be more than most

Beachbum1023

Hello Rads Ladies, I finished #19 today! I have 28 total to do. My skin looks tanned/pinker today. My armpit is sore, but looks dark tan and red. It is the worst, go figure, I have breast cancer but my armpit is fried?? I know they are going for the nodes but one would think the breast area would look worse than the armpit. But my rib cage hurts as well. I feel like I got punched in the ribs. And since the breast and the nodes are gone it's just frustrating. I slather on the Aloe, and switch to Aquaphor at night. I am just so glad to be on the downhill slide right now. I hope everyone is doing well, and have a great weekend!

JustJean

Thanks, NoMatterWhat, for the words. After the day i had today I really needed to hear them.

<this is the space where just a few moments ago there was a long and terrible rant that does not belong on this thread>

Rant deleted. I'm taking my mutilated body and mind to bed.

JJ

Annie88

Hello everyone. 25 down and 3 to go. I am happy to say it has all gone smoothly. Today was somewhat hectic due to my running late. The treatment facility is 45 minutes to an hour away. They were so nice and told me not to worry, that they will be there until 5. It was really the 1st time I have been late the entire treatment. I left my wallet behind at work, so I had to go back. Friday is the time I pay the RO for treatment for the week. I am just curious is everyone paying a copayment for each day of their treatments or another way?

Nomatterwhat

JustJean, I am always available for you on the private side. 

 

magdalene51

LARock, I will have 36 total: 28 + 8 boosts. I was initially told 5 boosts, found out about the other 3 this week. Two regular tx left.

CassieCat

I'm done with #7 now and feeling grateful for each day that my skin and the whole area feels alright. I'm glad that I know what it might look like at its worst, so that I can mentally prepare. If I sail through, all the better!

chtease

SunnySydeUp, I tried using Aquaphor in the morning and putting on a bra afterward. It was not good. Given that bras tend to need to be washed in cold water, I could not get the grease off my bras after 2-3 wearings over aquaphor. Aquaphor also tends to melt when exposed to body heat, so it migrates with time too - gross! I really think you'll be happiest using Calendula cream (NatureWorks brand) when you've got to work and wear a bra and using Aquaphor at night with a guy's tank top teeshirt aka "wife-beater" to protect your sheets. (Wish I'd known the teeshirt trick when I started. I'm going to miss my pretty new now-ruined sheets.)

Leslie58

Sorry for not posting this week.  It has been a whirlwind and stressful week.  But I made it!  I want to say Thank You for the warm welcome!   I'm so sorry for those that are having a hard time and wish you well.  When I start feeling sorry for myself, I come here,.  It's so that I can remind myself that things could be so much worse and to remember there are many suffering much worse than me. Praying for each and everyone of you!  I also want to congratulate everyone that has wrapped up rads!  Good job!     Anyway so far ive had 5 rads.  Starting to get red, and my poor nipple is starting to look like a maraschino cherry.  At first I started out with Aloe Vera, Aquaphor, and Radiation Relief that the med clinic gave me.  I'd use the Radiation Relief immediately after rads, aloe Vera for several hours after I got home and then the Aquaphor at bed time.  Wednesday I received the Calendula ointment.  For me...the Calendula was the most soothing application after cooling things down!  Much better than the Aquaphor!!   The staff at the Rad clinic have been great.  Very attentive.  I'm riding a free bus service 160 miles round trip....it's been ok.  I'm thankful the service is there for helping cancer patients get to treatment so I won't complain.    All in all....it's been...ok.  

I still need to work on some things though.  I need to work on my stress level.  It's through the roof.  To give you a clue...18 yr old son who knows everything! LOL  Plus I need to work on a new routine.  I'm finding that having to travel 4 hrs a day, doesn't leave much time to take care of things, and I'm hitting a brick wall late afternoon and I'm getting so tired!  Speaking of brick walls....I just hit the second one of the day.  Time to go.  I'll try to check in over the weekend.  If not then next week.  I have so much to do on my 2 not traveling days, that I may not be able to post. 

Take care, Ladies!  Prayers!

Leslie

Beachbum1023

Hi Leslie, 5 done is a good start! My RO told me to try to get as much air as possible on the radiation area. I wear loose tops or a light summer shirt when I can. The Aloe Gel during the day seems to help, and Aquaphor while greasy does the most overnight. I finished #19. I have 28 total. She hasn't decided on the boost yet. But drinking water helps too.

Stress is tricky, because it is coming from all directions, and different sources. It's hard to reduce it. But I try to do something every day just for me. With the travel time, maybe you can look through a book or magazine, or perhaps try to relax. I am going to try to make some jewelry this weekend. Maybe your Son knows how to clean and do laundry?? I do hope he helps you, you need some rest. Try not to over do it this weekend, you have a ways to go! Take Care.

Sjacobs146

Annie, I haven't paid a thing for rads, no co-pay. I paid a co-pay for my first RO visit, but not since then. But I have excellent health insurance, your mileage may vary.

I have redness in my armpit too. Doc gave me a special soap to wash with 2-3 times a day which is supposed to kill bacteria and yeasts. Then I folllow up with Eucerin or Jean's cream and cornstarch. They didn't tell me to use corn starch, but it keeps things dryer which can't be a bad thing

dacre

Hi All....new and old...Haven't posted anything in a while. Mostly b/c I began to feel like I was just complaining and was hoping for some pity...poor me...

I decided to keep my mouth shut...or my fingers off the keyboard. I have, however, continued to read and absorb all the info that everyone has to offer. I must say, this is an Amazing Group of Women! We all have our own story, but we all share the same story also. All I know is, (which isn't that much!) that it is really important to share our information, feel everyone's happy days and hard days, and continue to encourage each other.

As far as "scaring" newbies with too much info....that's a difficult call. I, personally, would rather have all the info, good or bad, so as to know what to expect. There are many people (such as my mother) who don't want to get into the details and just want to get over it. If the information is too overwhelming I understand, but not knowing things is even scarier to me.

So, here's my update. Just finished #20 of "tanning" (which is what I call it!) with 14 more waiting. I have had some problems. On a scale of 1 - 10 with 10 being the worst....I guess I'm at a 6.5. Not bad....kind of concerned about the next 3 weeks and how that may impact my skin....but that's another day or 14 days...hahaha.

I sunburn. If in the sun w/o protection I will burn, even it's overcast. Therefore, I was very concerned about radiation and the SE's. I did start using the 100% aloe at the very beginning. I turned a little pink very soon, but the aloe was helping. But then it wasn't....so I started with the aquaphor. That helped also, for a while. Then my skin started to get very itchy but it was tender and more reddish so I didn't want to touch it. I tried just rubbing the area with the aloe and the aquphor but it really wasn't much relief. Then, at night, it really felt like a "sun-burn" so I got up and took some Advil. I was seeing the RO the next day so there wasn't too much concern. When I saw the RO he thought the area looked pretty good but I told him how "itchy" it was and pointed to the area of my concern. He told me it was okay to use Hydrocortisone cream along with the other two. If the Aloe was drying my skin out too much and the aquaphor wasn't much relief then use the hydro cream. I have extremely sensitive skin, live in NY state and it's the middle of the coldest time of the year, I am very prone to excema and always have a script on hand for the hyrdo cream. Let me just tell you all, using that along with the other stuff, has made a world of difference. It takes away the itching, the aloe soothes the burning and the aquaphor helps the skin to heal. Just wanted to share that info since I haven't heard anyone mention the hydrocortisone cream. It has really helped me.

Here's another question that doesn't necessarily have anything to do with our personal situations. Do men have access to sharing info re: prostrate cancer the way women do re BC? The're probably are some "boards" with info for men, but I know my husband wouldn't be the least bit interested in discussing anything like prostrate cancer with "strangers". My husband did have PC. He believes I'm obsessed with my BC "situation" and that any little thing that I feel will confirm that the deadly disease has reared it's ugly head. I totally disagree and told him that I will "forever" worry and be concerned and that's perfectly normal....for women. "Men are from Venus Women are from Mars"....my ex-husband bought the book for me. It was when he was hoping/begging to reconcile our differences. At first I just wanted to throw it at him, but as a true book lover I did read it. I have to say, it did make sense. It didn't help our marriage to stay together, but it did help me to understand how "men" think. So, even though my husband says "dumb" things....I understand it's b/c he wants to able to "fix" everything and he can't. It's like the story of The Emperor's New Clothes....

On that note, I will say good morning...good night to me since I haven't slept.

dacre

As if my previous post wasn't long enough, I now have to add one more thing.

My last chemo was 12/29/14. I compared my bald head to a coconut....which is really what it looked like then.

Today, it looks more like a peach. Fine hair starting to grow back!

Soon I may resemble a Rambutan.

Hopefully not a Chia Pet....hehehe

Annie88

sjacobs- you do have great insurance! I have to give a copayment for every treatment, which doesn't apply to my deductible. Oh well, the rads are done after 3 more treatments.

My skin is is in good shape,as my RO gave me an RX for a corticosteroid called MOMETASONE FUROATE, it has prevented the burns. The tech said that they have been using it for 2 months and the skin he has seen looks much better. They recommended no deodorant or bra for the entire treatment. It has been hard to not wear a bra, but comfortable. I wear a cotton tank underneath everything for a little coverage. It was funny when I went shopping for the tanks back in January, I must have been the only person shopping for tanks during winter. The nurse said to use Goldbond powder to keep it dry. She also suggested Dove soap for bathing

WndrWoman

SunnySydeUp. I agree that Aquafor is gooey and best at night. You can do it during the day and wear a bra over a t-shirt, cami or undershirt.

Chtease. I have used dishing washing liquid to get the greasy stuff off the bras - washed by hand with a long soak and gentle scrub.

Leslie. During rads see if you can led a few things slide. Housework can wait a few weeks. Get take - out or pre-cooked meals. Tell your son that the treatment makes you tired so he understands and let him know that you will be more yourself when it is over. Kids don't like the unknown any more than we do. Try 5 minutes of deep breathing. Remember that you are getting through this soon.

WndrWoman

Sjacobs146. Probably before you joined us there was a little cornstarch talk. Several people used it. My nurse said they had recommended it in the past over the cream or whatever but some studies showed it feeds the rash. I had experienced that in the past with talcum powder so would avoid that. She said I could try the cornstarch but they had decided to drop that from their recommendations. Whatever works for you.

WndrWoman

So many postings!

Dacre you gave me some smiles. And a very helpful description.

Annie88 I was told to use Dove soap too.

Annie88

wndrwoman-I used to use shower gels, but BC has made me question all of the extra chemicals in everything I use. It is easy to look for a reason that I got this BC. There are so many things with so many added fragrances and chemicals. I am trying not to become too compulsive.

dacre

To Leslie58: There are free services available for home cleaning. Trust me....I thought I could keep up with everything, just would take me a little more time than normal. Well, I was wrong and right. I could keep up with stuff, but then I couldn't do anything else. I looked on-line for something entirely different (co-pay relief) and found a website called "cleaning for a reason". Filled out the app. Of course they wanted dr.'s verification which I emailed also. I was notified that I was approved for 18 hrs of home cleaning....3 hrs/6times. Problem....they have to find someone in my area. I live in upstate NY so I figured the chances of any cleaning services in my area would be pretty slim. Well I was wrong. I was contacted by 3 different organizations offering help. Yesterday, there was a wonderful young woman here to clean and I have to say she did a fantastic job!

There is help available and I only found it by accident. Begin to be a "google" queen and/or have your son google for you! You would be amazed at what is available that people don't know about.

CoyoteNV

Lots going on here in the last 24 hours.  Welcome to you, ThinkingPositive.  That's a great thought.  I've also been one of the fortunate ones with tolerable side effects from radiation.  Personally, I am of the opinion that some side effects from all the bc treatments will be with me forever.  We are all resilient.  We can deal with almost anything for a short period of time and some things all of the time. That doesn't mean we like it! 

Wheely ~ the pre-rads CT for me was to set up the radiation treatments. My treatment equipment used CT with every treatment.

Kayfry ~ You and Wheely will be side by side in your treatment process.  I imagine there will be a Spring group coming soon for you two to get involved with also.  You will be able to lead the way!

Gemma ~ Congrats to you for your completion.  You are right, it has been great having this connection to you across the world.  I wish you well and will look forward to encountering you on the website as we move into our "Now what?" mode. 

Beachbum ~ Yup. 3N doesn't give us many options does it?   You are so very courageous.  You're being on this topic has helped me so very much.  I seriously thought that if this !#$ comes back again I'll just give it up. Your fight and positiveness has given me a major attitude check and helped me understand that "if" it progresses, I can continue to have a life.  I'm grateful for you and to you.

dacre

Again to Leslie58: Almost everyone experiences the stress and anxiety on a daily basis. Some people deal with it better than others. I have to say I haven't dealt very well with everything. I (and many ppl) ask for "temporary" anxiety medication to guide us through. I never thought in a million years that "I" would be prescribed Xanax....much less actually take it. I was terrified to even attempt to take it....but I knew that I wasn't dealing with everything very well. I was prescribed a very low dose. It has made quite a difference. A very low dosage will simply help with the stress/anxiety level so that you can focus better. Once you can do that....the stress/anxiety level is relieved. Just something to think about and maybe discuss next time you see your RO. When I discussed it the first time with my RO he told me to make an appt with my Primary and my Therapist. I told him I would do that...which I did. But then my answer to my RO was "I will do that....but I still have to come back tomorrow and then next day..blah blah blah". "I can't see these Dr's before tomorrow!" That's when he wrote me a script for xanax.

Bippy625

i had ct, contrast mris, but no pet scan.

Last night my BIL gave me a bottle of Cactus Juice. he orders it online. It is working like a MIRACLE for me. Much better than aloe, silvadene, aquaphor, etc.

newbies-do not be afraid from my and jeans experiences, Just wary of ROs proclamations of having a wonderous, mild experience. We share here to help ourselves vent and to let the truth be known, about the few that will have a severe reaction. We hope it will not happen to anyone else, but we were lied to, and our concerns, and our pain and suffering continually minimized---having to wait and beg for pain relief is unacceptable.

Now, everyone have a good weekend, and SE free!!

Professor50

Like many people my armpit was the most reactive to the radiation. (Probably just because that's where my bra strap would hit and also where there is just more friction with my arm moving around). My RO said that it would likely start healing quickly since it would not be getting the boosts. This morning, I was getting dressed mindlessly and it occurred to me that my arm pit looked...um... completely normal. I am 1 week away from my last boost so 2 weeks from the last time my arm pit got zapped. It really is back to itself.

Also, can I just say I hope I never again take regular deodorant for granted. Tom's of Maine came in 1 scent for me: Body Odor. I am so happy to smell like myself again.

WheelyGirl

I was told I would not have a co-pay or any other type payment during rads,  I asked them to double check that for me as my expense during chemo was ridiculous.  One day my co-pays were $135 which is a lot on top of all of the other expenses associated with this horrid decease.  I am soooo glad I will not have any out of pocket expense during rads, what a huge stress reliever.  I hate it for all of you who have copays and such as if the treatments are not bad enough.

Hope everyone is feeling well today and able to enjoy their weekend.

WndrWoman

Bippy625. Cactus juice!! Who knew. But similar plant to Aloe. So glad it helps.

Professor50. LOL your deodorant comments.

Coyote. You are the best! And you have been so good to keep WinterRads going long after your treatment was done. I am sure someone will start a spring group with a new list of women, although spring feels a long way off here in the northeast. If karma works, you should be rewarded with a long life. I certainly wish it for you, and everyone here.

farmerma

Bippy - Cactus juice??? Any particular kind/brand? I searched online and saw Prickly Pear and a bunch of others. You just wipe on with a cloth then? I found my 100% Alloe gel yesterday (NO alcohol, too!), but would love to have other remedies on hand as well. My daughter was using Aquaphor for a tattoo she got and said how greasy it was. If I can avoid using that, I'd love to. It just sounds gross to me. Who wants to roll around in bed like a greased pig?

Every once in a while I have to think that I have never once thought about the cost of this whole ordeal. Of course I think about it when the bills come in the mail, but as you are approaching this you just do what you have to do and deal with the financial consequences later. All I can say is, THANK GOD we have good insurance. When you look at just the bills form my two surgeries--$86,000 for the first and $15,000 for the second--how would ANYBODY be able to deal with that without insurance? I have never once asked how much something was going to cost me. I probably will when it comes down to deciding on the final reconstruction phase. It'll be a deciding factor on whether I want to live with some imperfection or I want to look the best I can. Sad, isn't it? Our lives are forever changed.

Let's all have a wonderful weekend! In a way I'm looking forward to my first rads session on Monday. Just knowing I'm started will mean I'm that much closer to finishing.