September 2010 Rads
Comments
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caltex catlady & RCCA- Congratulations on being done. Yeah!!!!!
Bubbalu-My thoughts are with you hope everything went well.
CibaGiegaBabe-Yes we did start the same time. Glad your skin has help up well. Fortunately, mine has too. My radiation oncologist said it looked amazingly well, it is only a little pink.
Today, after 24 treatments, I "graduated" from full breast radiation and will begin the boosts tomorrow for seven treatments. Two less treatments than I originally thought. The end is now in sight.
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KaeB: Thanks for letting me know I am not alone with the purple skin! I am very sorry to hear they want to cut off your medical benefits...that is awful. I hope you can fight that.
I called the nurse and tomorrow will go in to see how to apply something called silvadine (a cream with antibiotic in it) and a dressing for the place where I lost the skin under my arm. I hope I don't get more of these spots. It will make wearing clothes a bit difficult. I'm very tired too.
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dutchgirl: I'm doing alright, although my skin under my arm is still hurting. My rad doc also gave me Silvadine, like sespebadger got. We'll see how that works, I'm hoping it helps. I started taking Rx pain killers to help me at night as well. I'm very happy they are doing the boosts now to give me a break from the axillary area. The boosts are much quicker, and they use the bolus on me now. I'm also exhausted as well. Getting through work is becoming increasingly difficult.
Hope you are all doing well! My eyes are closing as I type this...
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Yes, congrats to those of you finished...how great that must feel to have it done with. DMS...having yours end early must feel like a Christmas present! That's terrific. We are lucky with our skin--I'm feeling for everyone of you now having serious issues with your skin and pain. It is what I dreamed about before all this started...had a dream of my skin coming off. I am exhausted though, and am getting nothing done. My vaccuum has been sitting in the same place on the floor since the weekend. The silver lining to this cloud is that I'm so tired I'm sleeping like a log all night, whereas I'm a really light sleeper normally, normally waking up then staying awake for a couple of hours unless I take something at bedtime. No more.
Hope bubbalu's appointment went well. Am looking forward to hearing all about it.
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Sorry to hear that some of you ladies are struggling with skin falling off, pain, burns, and Cobra payments or back to work. Ugh! It all sounds frustrating that's for sure!
My left boob which is really a tissue expander is swollen and inflamed and very sore. Radiologist gave me a steroid yesterday. I am pink under my arm and am trying to lube it up several times a day with aquaphor or the radia gel. Also found out yesterday since I am at risk for lymphedema that I should have been wearing my compression sleeve every day since starting rads. Well I wore it today on day 19 of treatments. Hey nobody told me til I finally asked the lymphedema therapist.
Well we are one day closer to done girls!
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hi Jsmiley60...what does your doctor say about the swollen, inflammation and being sore? I have had that since my first radiation. It is always warm to the touch and pinkish under the skin. I asked my rad. onc. about it and he said that he "would rather I not have it." I would rather not have cancer is what I thought! Wednesday is my doctor day so maybe I can get him to tell me what he thinks that it is.
I go for my pancreas testing on the lesion on Friday. I surely want to know what this is so I can either figure out a new treatment plan or not have to worry and focus solely on radiation and then the dreaded tamoxofin.
Hope everyone is doing well!! Bubbaloo, been thinking of you.
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Shygal, congratulations on finishing, feels good, doesn't it. Now you can go and have a really good nap. I hope that your fatigue starts to go away soon. I am having the same kind of reaction as you, the darkening and larger pores, and itchiness. I attribute this to the healing process, and am keeping up with the Glaxal moisturizer.
sespebadger, I hope that you don't lose any more skin, that must have been frightening! Take advantage of the break and rest, rest, rest!
KaeB, I'm sorry that you're having to deal with your insurance difficulties. I hope that you can get it sorted out, you don't need the added stress. I started back at work the day that I started rads, and although I would have preferred to have the time off, it wasn't as bad as I thought it would be.
DMS, a shorter length of treatment is great! You must have been thrilled to get that news.
Boca, sometimes I think that the downstairs hallway is the new storage area for my vacuum cleaner. We have all become adept at walking around it. You are right, we are very lucky with our skin, red and itchy is bearable compared having it peeling off and weeping.
jsmiley, the thought of lymphedema is never far from my mind, altough it hasn't been a problem so far. My armpit area seems tight after the rads, but I don't have any swelling, so I think that things are ok. I will be flying across the country in a couple of weeks, I hope that I will be ok with that as well.
Janet, I hope that your dr can give you something for your skin issues. I will be thinking of you on Friday, with crossed fingers.
Have a good day everyone, I hope that your treatments go well, and that your SEs go away!
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Hi----Rad Buddies--- I have just completed first 2 wks of rads with 4.5 to go. I am looking forward to posting that I have finished this treatment.
My chemo onc gave me a rx for femara as I am post menopausal. Is anyone taking Als while doing rads. I am interested in finding out how you are doing with the two of them!!!! I will try taking them this weekend to see how I do. I am back at work this week also and so far am able to keep up. I have been out since 5/28/2010 with surg, chemo and now rads. I wanted to go back at this time because this is Breast Cancer Awareness Month and I am a Diagnostic Tech in a large Ctr. Our Dept is always swamped this time of year and I thought they could use my help plus I thought going back to work would help me focus more on others rather than my own woes. I have always been a people person and am not dealing well with having to concentrate on me so much. Hope that does not sound strange.
I was told that if you have to fly you should wear a sleeve because flying can bring on lymphedema. I am starting to think everything can cause LE. I have not been evaluated for LE and wish I had gone for measurements before starting Rads but I didn't. May still see if they will take a look at my arms and get their opinion.
Hope all are having a good week with no pain, skin rashes, oozing, or peeling. God bless us all!!!!
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Hi ladies, one of my rad tech's today said "yay, you're in the single digits now!" Wow, I didn't even notice - I've just been trying to get through it, so thought it was cool that at least he's keeping track for me.
They're also playing cool music during my treatments, makes the time go by much quicker. So I have 3 full treatments left, then 6 boosts. *whew* The only areas that's getting tender is the side/underarm area... but I am turning a little purple elsewhere, but no pain or anything (*yet*) I am noticing some increased fatigue, but hey, I'll take that over chemo SEs... getting near the end. I'll be happy to be done, but is anyone else feeling a little weird about finishing?
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I'm in the single digits too! Can't wait to be finished. Got the Silvadine today, I have it on right now and hopefully it'll take care of that area quickly. I have 4 more boosts and then 5 axillary left. I also feel a little weird about finishing...it's like rads have become part of my routine. My plans always revolve around going there, coming back, how I'll be feeling....It will be sooo nice to not have to center my life around active treatment anymore. The countdown begins!
I just started my Tamoxifen on Monday. I've heard horror stories...so I'm keeping my fingers crossed.
Hope everyone is feeling as well as can be. Only 2 more days of the week...then 3 day weekend!
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I am thankful for a visit with a GOOD nurse at my rad onc's office today. She was very understanding. She applied silvadine (burn ointment with antibiotic) all over my treated area (including the small area where skin has come off), then a layer of a thin gauze that had some kind of vaseline-like coating, then some bandages, and then a mesh tube (like a tube top) that holds everything onto my chest so that we don't have to use tape. Such a relief to know I can protect my sensitive skin from my clothes. I am attending a rehearsal dinner, a funeral, a wedding and a concert this weekend and I may even be able to wear a sports bra over this bandaging with some soft forms inside and look kind of normal. Yay!!! The nurse said that radiated skin can be this sore for a weak and a half or so after radiation finishes. I am glad I am having a break from rads this week and finishing boosts next week. She also said I shouldn't put off taking pain meds until nighttime...that the pain kind of mounts up this way. So, I'm taking some Advil in the day and Darvocet at night rather than toughing it out during the day as I had been doing. She gave me supplies so I can do this bandaging myself. I figure I'll do it in the mornings each day and just put on silvadine and an old tee-shirt at night.
My medical oncologist said I could wait until two weeks after rads to start tamoxifen. She said that way they know better which treatment is causing which side effects!! I already have hot flashes from chemo-induced menopause, but I'm convinced tamoxifen really helps prevent recurrence and I want to do anything I can to do that.
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I have 12 treatments left not sure how many of those are my booster treatments but I am so glad that this is almost over but I have to admit YES I am feeling a bit odd about my treatments almost being over. Just started getting this crazy routine down but I will not argue with it being almost done thats for sure, PHEW! My skin is a tad bit pink but not to bad hope it stays ok thru the rest of my treatments.
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Last Friday the dietitian at the rads center told me that I need to ease up on my stress load. On Tuesday my Rads Onc told me to take it easy and rest up. Yesterday the social worker at the rads center told me that I need to slow down and take it easier. Today the technicians and the nurse at the rads center told me that I have to redo my schedule to ease the pace and rest. I guess they are all trying to tell me something! I've had 13 tx with 20 more to go. Am fatigued but still trying to keep all the plates spinning and fill every minute of my days. Then I get home and collapse. So next week I'm finally admitting that I can't keep up on this treadmill and I'll slow up. No more dawn to dark races for me until next year. I do have to work to pay the bills but I'll just have to work smarter, not harder.
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My treatment was cancelled today because the machine was down! On the one hand, yay!! And on the other hand, yuck, now I have to go one more day.
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Bon, the rad staff and nurse told me the same thing. They said that you really need about 2 months totally recover from Rads especially after chemo. Our bodies have been through a lot over the past 6 months and just because we're finished our invasive treatment, it doesn't mean that we're back to normal.
People are starting to treat me like I'm "cured" now since I'm no longer wearing my wig and I'm finished up all my treatments, but I think I'm going to try and take it slow over the next month or so. I'm glad I have some time to recuperate before Christmas.
One thing I've noticed this week is that my nipple has started to peel.....I'm still using the polysporin on it and of course the glaxol base so I hope it doesn't last too long.
Each day is one day closer to the END....hang in there ladies.
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shygal...I sure can relate to having people treat you as if you're 'cured' now that chemo is over. Everyone thinks radiation txs are quick and therefore easy. They sure don't know how tired I am! My BS and MO both gave me a talking to last week, and then the RO this week, because I went from surgery to chemo in 32 days and from chemo to rads in just 26 days. I've done the whole gamut of txs very quickly and they want me to slow down my work and personal load. So I will. It's just difficult to get others to understand that this fatigue is real because I look pretty well. With the wigs on and a bit of make-up, I look almost normal. I just feel like a hollow shell. Boy, oh boy, do I have a different understanding of cancer and what the treatments are like. I'm embarrassed that I didn't know how debilitating this all is and wasn't more giving to people I've encountered in the past who were going through treatments.
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Bon & Shygal: sorry that people are treating you like you are now cured and should be "normal" again. glad to hear that you are trying to slow down and let your body rest more and heal the way it needs to! you guys have been through a lot in a short amount of time!
Has anyone heard from Bubbalu? Just wondering what she found out in PA.........
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Hi all, just wanted to share with you something on skincare. In addition to aloe gel and Aquaphor, I use olive oil on my skin. I've included a link below that tells you about the benefits of olive oil for skin care. I started using it during chemo because my skin just dried up so badly. Now, I use it in my bath at night, massage it into the rad area and I use it on my hair too to encourage it to grow back quicker. Also my lips which have been really dry during radiation.
http://www.oliveoilsource.com/page/beauty-and-olive-oil
DR
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Shygal - I agree about understanding cancer and cancer treatments now. I now feel badly that I didn't express more sympathy and compassion for people that were going through treatment in the past - I always used the excuse that I didn't want to invade in people's privacy. I don't want to invade people's privacy - but I have to admit that I feel bad when I talk to people that know I am going through cancer treatment and they don't say anything about it.
Anyway - haven't had much to report. after treatment today I will be 13 down and 21 to go! It has gotten pretty routine. The staff at the radiation oncology center is great - very efficient and approachable. Haven't had much skin reaction (mostly under my arm where my lymphectomy scar is). I see an MD every week to assess my skin and health. He is from MD Anderson and has said that they like to see some skin reaction as that assures them that they are treating all the tissue - including the skin. So now I am a LITTLE concerned that I am not having a skin reaction as that sounds like it could be a good thing. Anyway - with 21 more treatments to go - I am sure I won't get out of this without some reaction.....no need to crank up the radiation!!
I am starting an AI after radiation - my oncologist has said that there are two theories on this and some docs start the AI's concurrent with radiation and some start after. Her explanation was also related to side effects - and wanting to know what treatment is causing what side effects. Anyway - I do look forward to this nice two day break on the weekends. Have a nice weekend everyone! And thanks for all the good tips and information.
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Hi!
I've completed 4 weeks of radiation, and starting to get sore with some shooting pain. I take tylenol during the day and one vicodin at bedtime. My husband and I enjoy the fall color while going for treatment. Have a nice weekend.
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Ladies: Here's the word from Philadelphia's University of PA's cancer center (#2 in the US) on my out of rad area burns. If you remember I had 4 txs - neck burn, took break, 4 more txs - another neck burn. My onc here said I should stop rads before I got a serious burn and infection. He would do whatever I wanted but he did not recommend continuing.
I went to Phila. for another opinion. The rad onc in Phila's center has never seen this before either! So I am something of a rarity with radiation. He examined me very closely, had all my records and profoundly agreed with my rad onc here that I should NOT have radiation anymore. His best guess is that I have something in my DNA or body chemistry genetically that is making me super sensitive to rads and I need to stop them now. He is going to do some looking into this at Phila with genetics and get back to me. His observation was that if I was burning this badly outside the area after so few txs, what could be happening that is NOT visible.
His conclusion was that since I had a very successful chemo (97%) and a successful surgery with clear margins, that I have an excellent chance of a complete recovery without the radiation.
I am triple negative so my options are limited. I did read something very interesting in his office to pass on. If you WALK 3-5 hours a week you can lower your risk of BC by 50%. That's HUGE! I have mixed feelings about having to give up the rads but I feel in my heart that the burn on my neck was a sign somehow and may have saved my life down the road.
So get out there ladies and WALK. I will be getting my port removed now and also my cataract. So we went from Phila. to our favorite beach on the upper east coast, Stone Harbor NJ for some R&R. Thanking you for all your concerns and postiive thoughts.
On with life..................
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Bubbalu, So glad to hear what the Philly Onc had to say. I know you have agonized about not being able to have the tx but I think in your case you best listen to their advice. Thanks for the walking tip- I have been upping my walking this week already but I think I'll kick it up a couple of notches.
Ladies, I have just finished my 10th rad tx and I am having a weird skin discoloration on my non cancer side over the drain scar from BMX. It started after the 3rd treatment and has been there 2 wks now. It started as a small pink area and has now become the size of a baseball and is very red. It seems to be getting worse with each treatment. All 3 Rad Oncs have looked at it and also my BS and all say they have never seen anything just like it. It most resembles a bruise but does not appear to be a bruise. It is not shingles, infection, or a rash but just a large discolored area that I don't know what to do about. If it continues they are going to send me to a Dermatologist to see if they can figure out what it is. Has anyone ever heard of anything like this? It does not itch and only is tender if I roll over on it at night.
If anyone has any info about this I would appreciate it so much. I don't know what to do about it because I don't know what it is. Thanks for any suggestions in advance. I will let you know if we figure it out. Have a great weekend everyone. Ginny
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Hi! bubbalu,
Time to move onto better days.
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gin2ca: Did you have taxotere before your rad txs? I had really good skin but since taxotere I have strange bumps popping up. I mentioned it to the oncs and they shake their heads in affirmation. Taxotere is really hard on your skin. My rad onc sent me to a dermatologist for 7 bumps that were on my arm for 3 months, like bites. He biopsied and they are okay. It's going to take some months for us to get our old bodies back. I would see a dermatologist.
Hearing some really strange SE's here from rads and so early in tx. I think radiation tx has been under-rated for SE's. Not as easy as they predicted.
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Bubbalu: Glad to hear that at least there is a final decision on your rad tx. You and I had the same chemo/surgery/rads dance. I have now completed #10 of 25 rads...so far, so good. Sounds like you are ready to move on - cheers!
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I was so glad to see your post bubbalu...have been thinking of you. Yup, sounds as if you've absolutely done the best thing. As they said...who knows what else might be happening and the cure could be worse than the disease, in your case. You pursued it thoroughly, now, go forward in health.
ginca2, I wonder if that area will get better over the weekend? No doubt there is a little spill over of radiation. I've developed two little red bumps on my non-radiated breast, a couple of inches over from where the radiation should stop. Mine are small and not growing, and similar to the red bumps that developed on my sun exposed skin on the radiated side.
teka...would love to have your drive in the fall color! I grew up in one of the big tourist areas for fall color in MA (Berkshires) and miss that time of year here. It should be getting really pretty about now at "home".
I'm in the home stretch now, 1 more full treatment and 5 boosts. Skin still doing OK, although very red, it's intact and not painful. How very different all these reactions are!!
I used to be a runner, 6 miles a day, 6 days a week. After 20 years of that, between age and now living in a very hilly area, I've dropped back to walking, 5 miles/day 7 days a week. I shudder to think what would have happened to me if I hadn't been doing all that!!
Have a nice weekend all! Enjoy that fall color for me please!
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Good morning. I hope your Saturday weather is as lovely as ours is here in Florida. Finally no humidity and just beautiful blue skies.
I keep reading your posts about walking and feel more decrepit with each new mention of the need to walk. I am so beaten down after 14 rads tx and the fatigue is truly overwhelming. I can barely walk around the house, much less do it for exercise. Am now trying to get ready to go to the store and have had to sit down every 10 minutes for a break. I will eventually get out of here and have a grocery cart to lean on.
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Bon: I hear you! I am the same way......my fatigue has even caused me to start to fall over (to the side) some times and luckily I can catch myself on the wall and people think I should walk or exercise! lol! I will have to wait til the fatigue dissipates before getting into an exercise routine.
Bubbalu: glad to hear you got some expert confirmation!
Deb: on the olive oil, did you check w your radiologist on this? I had read somewhere that we were not to use oil based products on the rad site as it could cause more severe skin issues.
Glad it's the weekend! Everyone have a good one!
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I hope I'm not a party crasher as I haven't been on for a while but I've read the latest posts and I don't feel so alone in this.Babbalu- I'm glad you finally got the answer you needed and I appreciate the walking tip. Ginzca- I hope they figure out what's going on with you so you can get rid of your red baseball
. And congratulations to everyone that has finished!!!I just finished my 23rd treatment and have a red bumpy rash on all the skin that has seen the sun from the center of my neck/chest all the way over to my side, but deeper red in the center. I've been dealing with that but I started having all sorts of weird sensations in my body in my stomach and back (non cancer side) on monday. Turns out I have shingles and it's awful! I haven't slept much this week and was up all night last night in horrible pain so I'm going to start taking oxi contin today and a nerve blocker. I feel like Sylvester Stalone in Rocky, battling the big fist of cancer and its treatments.I also have cracks on the sides of my mouth. I hate to be such a complainer but this is the only place I feel that I can complain. With everyone else I put on a good front and say I'm doing great!!!
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Bubbalu, I believe in your case the SE of radiation treatment far outweigh the benefits. You are a rarity, are they going to study you any further? Or at least look into your DNA in case someone else has this same reaction? It would be nice if they could tell if it is going to occur before going through all you had to go through. I am glad they have decided to stop radiation for you esp if you are at 97% with your surgery and chemo, why did they want you to have radiation anyway? Nothing is 100% as a matter of fact I believe that is my percentage with surgery and radiation. Forget the mixed feelings, doing the math I don't think radiation would have gotten you more than a 2% increase and therefore not worth going through. So does this make you done and just needing to recover? If so congratulations, thanks for the walking tip, I am sure all of us will try to do more of that when we can. Best wishes on your recovery and getting your life back.
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