January 2011 Rads
Comments
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jw - When I get to the tami I am going to try this approach (splitting the dose) as well. did your onc say if they had any objective measurement to know if the tami is working?
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Omaz - I do the split dose and it is working great for me. I am going to continue with this approach. I have read there are tests that can tell if the tami is working but I can't remember what it is. I would have to ask my onc as well.
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lestwin - I am jumping in this one, they say don't use aluminum based deodorants. I use Toms brand aluminum free unsented extra absorbant. I do not use it on the right side (tumor) as I have not needed to.
Sherry - I hope you feel comfort soon.
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curious about the ingredients for Miaderm. I am allergic to parabens. Can someone using the product read the label and tell me if any parabens are on the list. Start rads on 1-31, want to get ahead of the skin reactions. thanks to the community
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I get 5 zaps...One long one, then 2 from 2 other angles. Xrays every 5th, which is Monday for me. I have completed 22 of 33 (YAY), but my skin is getting bad so tomorrow we start the boosts then we will return to the regular treatments. I have stopped wearing a bra and now just wear tanks or camis with a sweater or sweatshirt over it. Congrats to eveyone who has completed their rads!!!!!
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Finished #7 today. No skin issues or side effects..tech did say it was too early. It is strange going everyday but they are really friendly and I am in/out in no time. I am counting down each day. I have bone scan tomorrow in addition to rads. Nothing like full day of radiation!
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Jo hope eveything is Ok please let me now what the BS says.
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sherryc- sorry to hear about the blistering, but so happy for you that the end is near! If you come up to Austin we definitely need to meet up and celebrate!
Today was #5 of 36 for me... no issues yet, but I know its pretty early. Yesterday when I met with RO he said he was "going easy" on my dosage because of my organ transplant and suppressed immune system (kidney and pancreas 12 years ago). It scared me because I don't want to get shorted on needed radiation. He explained that there is a "range" he can use and that he has it at lower end on me, but that it is still enough radiation. Weird. I didn't ask, but I'm wondering why they would give you a higher dose if a lower dose is sufficient. I hope I'm getting enough! Also, I haven't had any CT's nor any talk about any. I think I'm getting x-rays but don't know for sure. What should I be expecting as far as any testing during the course of rads?
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jo - saying a little prayer for you and hoping it turns out to be nothing.
lestwin - i assumed that it was the rad arm and used deodorant on the other side. I used a toms brand on the other side or powder but it did get a little stinky...I think you can used it after your treatment on the rad side but see what your RO says.
omaz - my Onc gave me a presrciption in Oct. for Tami and said start 1 week after rads. And then she said "See you in 8 Months.." My apt with her is not until April or May. Since I didn't have chemo I didn't really connect with her all that much. I am going out on my own with the split dose and then if I have a problem I can see her. No one ever suggested I have any testing - I think you can have a test to see how you would/are metabolizing the Tami. But my guess would be they like to wait and see if you have SE or not. I can't/won't take effexor or neurontin for the hot flashes and they are my biggest concern. I got the split dose idea on my own. (I am a graduate of the Univ. of Google!)
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jw - I have hot flashes like crazy! Last night I lost count. I don't want to take anything either. I am working with diet to see if it helps to eat or not eat things in the evening. During the day I don't mind them so much but they interfere with my sleep.
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I crossed the finish line and am doing the happy dance. Had a nice long talk with my doctor and am feeling really good about the future. Looking forward to celebrating with my family.
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Whoo Hoo GuyGirl!! No more zaps for you!
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Lestwin: I use crystal stick deodorant. Of course you can use normal deo under the other arm but I never bothered.
It was 95 degrees here yesterday - the first really hot day we've had this summer. Hopefully it will be a little cooler today.
Sue
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GuyGirl - congrats
Just back from the RO, had a real nice talk feel good about my treatments. He says things look real good for me. I told him about the tightness under my arm and said that is expected about now in the 3rd week. Exercise the arm a lot to stretch it out. Ask about dose, he said standard for bc is 2gray for the breast area (which is on my chart) and 1.8gray for the lymph-nodes. This is the same as 180/200 center grate and 2/1.8 rands or something like that. He gave me a physics explanation for my bolus treatment using playing pool. Basically when you make the first hit the ball in front stays in place but all the other balls scatter. So the first ball is your skin and when radiation hits it nothing happens to it but all the molecules under the skin are broken up. So the bolus or second skin is used to break up the molecules with in the skin.
At least he did not call me sweetness today.
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I just got back from the surgeon and everything is fine. I had some fluid build up which he drained. The fluid will be sent out for testing and I go back next week for a CT scan. I was told this could happen for months even years. But at least I know what to do the next time this happens. Feel soooo much better now. Thanks everyone for your thoughts and prayers.
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I'm sorry Jo - I missed the post before about your going to the surgeon. Glad everything is fine. What is the fluid from? And is the CT protocol?
HUGS to you.
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Oakley - The fluid is normal when you have a lumpectomy. Typically, the fluid is reabsorbed into the breast tissue but can build up pressure behind the nipple and become uncomfortable. When it is drained off, it is instant relief. Some don't get it, others do. The CT scan is just a precaution to make sure there is nothing else there. My surgeon is very thorough. Don't know if it is standard protocol but I will have it done just because I trust what he is telling me and it would make me feel better.
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I had number 17 RADS today. I am still having shortness of breath and trouble getting air down into my lungs. My RADONC insists it is not from the RADS but I didn't have it before I started treatment. It is getting progressivley worse. I went to my family doc today and he thought it was from the RADS, he called the RADONC and the RADONC talked him out of thinking it was from that. Now I have to see a pulmonologist........geez, it's one thing after another!
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Victoria,
I am having the same problem. My RADONC insists it is not from the RADS but I never had it before. I have had 17 RADS and it is getting worse. I have trouble getting the air all the way down without great effort. I went to my family doc and he sent me for a chest X-ray, which was fine. SO now he is setting me up to see a pulmonologist tomorrow(hopefully). I have to stop RADS for a few days.
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Jo - thanks for the info - didn't realize about the fluid. I wonder how long after the lumpectomy that can still happen. Glad you got the relief you needed - I'm sure it was really uncomfortable. I'm having breast/nipple pain from the rads (and the rads onc says it's from the rads and the healing of the lumpectomy too) and it's uncomfortable, but I can deal with it.
Good news for just today - I got the go-ahead to shave under my left arm (which I was told not to). I keep waiting for the hair to fall out and for my glands to shut down, but it's not happening! The corn starch is just not doing it for me!
cmf - hope you feel better and you get the breathing thing straightened out immediately. You are definitely right - if it's not one thing it is another.
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Lynda we will def have to get together when I come to austin. Glad all is going well for your tx.
Jo-glad it was not anything serious but still a hassle to have to deal with.
cmf-hope the breathing is nothing serious will be praying about that.
Oakley the natural deo did not work for me I was so glad when my glands shut down.
Saw my RO today and showed him my blister area close to my areola. Also about 1 1/2 hours before tx I started itching in a new spot. When I got undressed I could see the start of a patch of small blisters. He took a look at all of it and asked how my nipple felt (it is very very red) I told him it hurt and I have a high pain tolerance. He said it looks like it hurts. Told him I was not wearing the nipple shields any more because of where the blisters are located. He was glad of that. So bottom line is when the blisters break they are drying up and not staying wet which is good. He told me to use the Kenalog steriod cream for the itch and gave me a script for Regenecare which is a lidocaine oitment. It will numb my nipple and blister areas so they will not hurt. He said I can use it as often as I want. He just wants me to be as comfortable as possible. The bad thing about the nipple is it is also in my rad sight for my boost so no relief until I am finished next Monday. He did say that if the blisters get the wet wheepy stuff to call him and he will call me in a Silvedene script. So lets hope the little blisters that are raising do not get very bad and just dry up. I am thinking possitive thoughts at this point. I am near the end.
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Positive thoughts Sherry - POSITIVE. You are almost there - soooo close. Sounds like the blisters are coming and going quickly - you should get relief from the meds he is giving you. Good luck.
I am PRAYING for the time when my glands shut down - I'm not sure they will. I was so happy when she said I could shave - just did that now and I feel like a new person. Of course the other armpit is normal so I shave and use regular deoderant on that.
Oh well, moving right along.
Hope everyone is doing well.
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oakley - amazing the small things we appreciate now, I am looking forward to one day being able to sleep on my stomach again.
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Cmf and Victoria:
I haven't posted before here, but I am on #20 rads and had terrible shortness of breath from the first week.... so bad that I was hospitalized over New Year's eve/day while they checked out everything cardiac.... heart enzymes (no heart attack), lung CT, chest x-ray, stress test, echocardiogram of my heart .... finding nothing, it had to be an anxiety attack. Probably made worse because I was returning to work that Monday. Initially, xanax helped in the hospital. Now I find that meditation helps, and I had to reduce my work schedule and stop trying to do everything I did before all this started. My best to you both .... I know exactly how this feels. Perhaps for peace of mind, have the docs check everything such as heart, lungs, etc.
Best wishes.
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Went for no. 7 today. I am more pink this time that I have been so far. I need to be better about reapplying the miaderm. I really dont want the yuckiness. I also cut an old cotton tshirt today into large squares that I can tuck under and over my left boob to keep it dry an hopefully irritation free.
The daily appointments are starting to wear on me. I hate dealing with this every single day. Ugh. Ready to be done!
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tobye welcome to our thread, sorry you have to join us here, but it is a great group of ladies.
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Tobye - Welcome to our group - good place to hang out. Sorry you have to join us but there is alot of good information and support here.
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Tomorrow is #13 for me which officially puts me over the halfway mark (25 in all, no boosts) YAY! Skin is holding up quite well thus far. Incisions are darker in colour and nipple area a bit tender. My energy level is slowly fading and I find myself out of breathe often, too. Saw my Rad Onc and he said it is definitely from the rads. No matter how hard they try, lungs, heart are affected even a little as they are in the path of those rays/beams; and this is very powerful stuff.
take good care and just breathe!
Teklya
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Interesting that some rad oncs insist the shortness of breath is NOT from rads when logically, if we haven't experienced it before and a small part of our lung is being zapped that it is more than likely from rads. At least your onc Teklya admits it! I asked my rad onc today about it and she listened to my chest then said it sounded fine. For the life of me I can't remember what she said it might be caused by - I can't believe I've forgotten! I think she thought it might be inflammation and it should settle down, I hope so.
Cmf, good luck with seeing the pulmonologist, I'll be thinking of you and hoping you can get some relief soon and get back to getting on with rads. Tobye, I hope your breathing has improved, it sounds as if you have been through a tough time but glad the scans and tests of your lungs and heart came back clear. I will ask for extra tests too if it persists, just to be on the safe side.
Jo, sending positive thoughts to you for your scan and I'm glad you could get some relief with it being drained.
Oakley, glad you got the go-ahead to shave, I have been using an electric razor which does an ok job but the whole area including my boob is just numb and feels weird.
SherryC, I'm so sorry you are having such a horrible time with the blisters, hang in there, you are so close to finishing and I hope the cream gives you some relief.
#12 done and no fatigue yet (apart from shortness of breath) plus redness seems to be stable at the moment. Good luck everyone!
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Number 8 done. Getting a little bit of pink, nipple a little darker. My daughter has started calling my breasts 'trouts'. She says it is like the back fin is attached at the shoulder and the nipple is the head. I guess they do hang down and to a teenager must look like trouts (with lots of goo on them at this point!).
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