SEPTEMBER 2008 rads group
Comments
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Today will be #20, with 14 more to go. I have red, itchy, peeling, blistering skin. Dr. prescribed Silverdine. Still not much fatigue, and I'm still teaching my fitness class. I'm sure this is adding to the skin issues with the sweat, but it gives me energy so I'll put up with it. Yesterday, the machine was acting up so everything was delayed. Hopefully, the problem is worked out today.
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Kristy, there was no doubt I was menopausal. I'm 57 and haven't had a period for over six years. And several years back, my OB/GYN did one of those hormone tests to see if I was in menopause, and it indicated I was.
My onc prefers to start out on Arimidex, and if there are any s/e's you can't tolerate, he tries Femera.
Princess S...sorry to hear you've reached that stage with so many more to go. My skin is very red and itchy but I only have five more tx to go. I expected to have a delay or two because of machine problems (someone who had radiation several years ago warned me about it), but so far (knocking on wood) things have gone smoothly.
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Hi All,
I just had 17 tx today. Still, so far so good. Nancy258, I am learning that this is one time in my life I am happy to be small chested. As the doctor was checking me out yesterday he was explaining how large breasted women often have more rashes and irritation simply because their boobs swayed more. So I am finally not jealous of large breasted women!! HA!
I also have some sort of a bug. I still recieved my treatments, though. There's a lot going around. Yesterday I had to take my youngest to the doctors and then last night I felt like I was getting a cold. I think I may have picked up a germ at the office. I woke up this morning and felt awful. Hopefully it will go away fast.
Still praying for you all!
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Hey Kristy - My Onc put me on Arimidex as well. He ran the hormone test that Nancy mentions. He also conferred with his OB/GYN buddies on the results and they all agreed that I am post menopausal (I'm 44). Day 20 on Arimidex and no problems so far.
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Hey all! I just started rads this week and found out that my "plan" is IMRT. The rad onc was not at the simulation to tell me my plan or anything about it. He worked at the Mayo Clinic and just recently joined into the hospital that I am with. I am the first patient in my hospital to do IMRT and I am a bit nervous about it. I have been searching the web for information. I had a left mastectomy and discovered that chemo had an impact on my heart . . . so from what I am reading, I appear to be a good candidate. I went through all the pages of this board and saw that Susan is doing IMRT as well. Anyone else? Just trying to ease my mind since my doc put me on a plan that he did not describe to me and left town on vacation.
Jean
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Tomorrow I will be 2/3 done! The ol' nipple is really starting to get angry about all this. I was hoping that my boosts would spare my fried nipple but, alas, it is not to be.
Hope everyone's hanging in there.
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Let's see today was # 21, at the beginning I was told 35 treatments but that has been
changed to 33 - last 5 of those will be boosts.
Thanks for the Arimidex updates - I'm so glad -- so far so good for you two
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Thanks for the info on Arimidex - I wasnt post menopause before chemo and I think that is where the concern is on me- tested post meno after chemo but my onc doesnt trust it to stay that way.
Im in the double digits- # 10 today and skin is a little tingly
I caught a cold
Kristy
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'Morning ladies. Yesterday was #21 of 25. Only four more to go. The big countdown is ON!
I'm still very red and it's actually getting more painful now. I thought I would avoid that seeing as how my chest is pretty numb/nerveless from my mx, but I guess there are still enough nerves alive to feel the burn. Still, it's bearable.
#22 later.
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Congratulations Nancy. I am so jealous!! I have #18 today. Glad to hear you are holding up OK. Can you take Tylenol for the pain? My dr told me I could if I need to. Good Luck today.
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Almost done!! I'm so glad!
Have a Wonderful Day!!
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I can take an anti-inflammatory if the pain gets to be too much, but I'm finding it bearable. Still less than the splatter burn at it's worst.
Rose, we're seeing the light at the end of the tunnel. I can't wait! I started this journey back in January when I first found my lump and I goofingly said it would be like having a child...and has been all of nine months.
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I finished #11 today so Im officially 1/3 of the way through- had to go early this morning due to a business meeting this afternoon (all afternoon!)
Kristy
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I think the one thing that worries me is that I will blister...as soon as I get home I use Eucerin cream and then Aquphor at bedtime...should I be using more than I am....
As soon as I get home I need to lay down..yesterday I slept almost 2 hours...I get very tired and this is only my second week...I can't imagine what it is going to be like as time goes by,,
Pat
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Makraz, believe me, there's no reason to be jealous of larger breasts. They are totally overrated! I'm always telling my A cup best friend that I'm jealous of her, because clothes look so much better on her.
I'll be going for #18 today, and yesterday afternoon was awful with the itching. I wanted to scratch the skin off my chest. It didn't help that I also got my period so I have a touch of road rage. It's interesting that the only place I'm itchy and red is the area of my chest that has been exposed to sun where all my freckles are. All the virgin white skin seems fine (knock wood). The nipple a little sensitive, but not bad.
I began to alternate the creams to see if that would help. I only put the cortesteriod on this morning after showering. I'll put the Biafine on right after treatment at 11:45 this morning and alternate every couple hours. It seems the coresteriod makes me itch and the Biafine makes it feel better. But when I was putting them on at the same time I couldn't tell & I don't think they work as well when they are put on together.
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Hi all, yesterday the rad. maschine was down....
so I had a break....now 7 left...jippi. But I still have my stomach problem. It is getting really bad.....I bought Zantac...it helps me a litte bit.Maybe I have a gastritis...and not the radiation is causing this. It is hard for me to deal with the nausea all day long....
My skin is really good....I got the marker for the boosts. Now I look like an indian on the war path.
I hope everybody else is doing good.
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Hi, everyone! Deb, speaking of radioactive boobs, you've got to check out the Boob that Glows in the Dark here: www.kksphotos.com/blog.html.
Had #13 today. Have only 3 left & I wish all of you were allowed to do shorter protocols. The Canadians published the complete results of their long-term study on the 3-week protocol last week & ten years out, the results are just as good as with longer protocols. Maybe now more of us in the U.S. will be able to get this shorter one.
I've been doing well with my skin, hardly any irritation. But I've had a cold this week, and WOW, after treatment today, I barely made it home & when I did, it was all I could do to crawl into bed! Talk about fatigue! I felt like I'd been run over by a truck.
NancyD & Skye, glad the end is in sight! Roxi, some of the techs draw a crosshairs over my tattoos & some don't. Jane, good luck with starting. Thanks for sharing about seeing a PS already. I'm thinking to start talking to one now myself, even if I have to wait a while to get anything done.
Kathi
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Nancy and KAK--so glad you'll be done soon. I'm having kind of a meltdown. The nipple pain is intense, but the hardest thing is that I've become more short of breath as time has gone on. I do have mild asthma, but now I'm whipping out my inhaler way too often, and it's not working like it used to . My chest feels tight and heavy like there's a bear sitting on it. God. I can't wait to be done. I just keep reminding myself that the pain is about healing.
Anyway, don't mean to be a whiner. I just don't know anyone else who might understand. I thank God for all of you every night.
Ace
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Ace, will send up extra prayers for you to help deal with the discomfort.
Ive had 11 of my 33 and so far just a little tingly skin - of course, after a mastectomy I dont have anything to hurt but the scar.
KAK, congrats on being so close to the end. What kind of patients are put into that shorter protocol?
Kristy
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Ace, that's serious. Do you see the rad onc regularly? It's definitely worth mentioning. Maybe they would want you to take some steroids as you finish up. My chest is tight, but is more the skin than anything deeper. I have a cough but it's either a cold or allergies (both are going around). My rad onc isn't concerned about anything I've mentioned, but I'm sure an asthmatic would get different attention.
Kristy, the shorter protocol is for early stage patients who have had lumpectomies. My rad onc is Dr. Formenti at NYU who has been establishing this protocol in the US now. A necessary part of the treatment is the prone table, where you lie on your stomach and your breasts fall through an opening on the table. The table itself is shielded, so your heart and lungs are better protected against overspray from the radiation. They can use a slightly stronger dose, then.
SInce I had a bilat mx, I wasn't elligible for the 3 week plan, but my treatment is still only 25 days.
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Well, talked to my doc about the lung thing, and he was sweet and consoling as usual, but didn't seem to think it has anything to do with rads. Hmmm. They do take chest xrays every week, but I guess those films don't show the actual lung tissue. If I'm still bad next Thursday I will request a real xray.
Thanks for listening to my vent.
Thank God it's almost Friday.
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Hey Jean regarding the IMRT, that is the topic of the clinical trial I am in. I think it is a good thing. I too have left-sided breast cancer and from what I understand, with the aid of the breathing machine (it actually holds your breath) they are able to avoid radiating your heart. I did my simulation with it as well as lung and heart scans. It wasn't horribly uncomfortable but I'm asthmatic and a bit claustrophobic so the mask (sort of like a snorkeling mask) didn't thrill me. As it turned out, I ended up in the 50% that will NOT receive IMRT but the traditional method. I'm okay with that as I am doing my best "Let go and Let God".
Ace, I'm coughing too and am also asthmatic as mentioned earlier. It is a dry cough and it scares me because they did see some spots on my lungs during my diagnostic process. I will discuss with my rad onc tomorrow, let me know what yours says.
So, I'm 3 down and 27 to go - YIKES! Oh well, so far, so good.
Heavenly Father, bless they lovely women who are so openly sharing their journey with others and bless each of us throughout treatment.
Jane
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I am 1/3 of the way through my radiation. I am very fatigued. My arms feel like limp noodles. I am considering limiting my time at work but I feel guilty. Any thoughts on part-time vs full-time vs leave from work???
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Ace, I don't have asthma, but I've had a dry cough since the beginning of the second week of rads. My rad onc said it was probably allergies. Maybe she's right, but I still have it. Trying some Zyrtec to see if it helps.
Nigel1234, I think it's an individual thing depending on if you had chemo, your age, etc. I'm finishing up my fourth week of rads working full time and it hasn't been even a little bit of a problem for me. If it were, I wouldn't be here full time. I'd be leaving early or working from home, or whatever. You have to do what's right for you.
For me being at work makes the days go faster and keeps my mind occupied. Can hardly believe I do #20 tomorrow with 8 regular treatments and 8 boosts to go. Not exactly close, but more than halfway there. They asked me to come in 30 minutes earlier Monday so they can do a CT scan to plan out my boosts or cone something they called it.
By the way, alternating the creams seems to be working for the terrible itching I was having. I'm waiting at least two hours between the steroid cream and the emulsion cream, and I am much more comfortable. Still red and rashy looking, but not itchy and burning!
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I'm finished with regular treatments - now doing the Boosts - have six more to go and I'm FINISHED!! The burning is really bad - red red red and pealing all over the place - not a pretty sight - there is some pain but not too bad - told the rad. onc that I couldn't complain - this was so much easier than the chemo - the Boosts are soooooo fast - before I had 6 different "zaps" and now just one - I am really in and out of there now.
Had some really really good news yesterday - saw my regular onc. - they did blood work and my tumor markers were exactly how they wanted them - I was thrilled!!! It just takes things like that to make me very happy. He said because of that - there was no need to do another PET scan - I would see him again in 3 months and after that would start seeing him every 6 months. It's so nice to have appointments that far apart.
Will be seeing a PS next week to discuss my options for reconstruction. Told my husband the other night - I WANT MY BOOB BACK!! I know that alot of women are very happy and content with the mastectomy and no reconstruction - NOT ME!! Just hate I will have to wait a while now - after radiation - to have it - anxious to hear what he has to say - how long I will need to wait.
So happy to hear how all of you are doing - and most seem to be doing great!! The fatigue is the biggest thing for me right now - I could sleep constantly - have to make myself do anything - just want to sit. I know its better for me to do things BUT the nurse told me yesterday that the fatigue is because my body is working so hard to heal that it is wearing me down - she said to not worry about it - to SLEEP whenever I felt like it - so - zzzzzzzzzzzzzzzzzz. ha ha
Hugs to all - Stephanie
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I have not posted for a while - playing catch up do the IKE. I just did my 15th treatment - not so bad (as I thought it would be). I have some rib ache, and getting a little red under part of my arm (I finally swore off shaving w/razor this week because of it) I am getting freckles where they have never been before. One freckle is just below my tattoo dot, told the girls I made my own marker for them. I just found out I am only doing 25 treatment (I thought it was 30) I am asking the doctor more about this next week. I am using fruit of the earth aloe vera 100% get (no alcohol) as soon as I get home from treatment. It really help it cool down, then later I use fruit of the earth vitamin E cream, so far it seems to be helping me. The doc said so far my skin looks great (I am very light complected and freckle). But I am feeling a bit fatigued. Glad to hear Nancy is almost finished, and redheadace 1 - when I get my treatments I imagine that the rads are getting any of the micro invasion cells left in my "space" , I read that it helps if you think like that during treatment. Hugs to all the rest of you girls glad to hear most of you are doing fine. Holly
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Hello, today was 13 out of 33. Sorry to say, SE now starting. Mostly my nipple. Near the end of my treatment, I got a sharp stinging pain at the end of the nipple. When I looked after, it was grey! The nurse gave me Aqaphor cream for now and Curasol gel, which is mostly Glycerin, for later. She told me not to use the Curasol unless the skin got red. She also told me a good trick: put it in the refrigerator! Then it feels really good.
Seems that this is the typical time when rad patients start to feel the side effects. So, my nipple hurts, and I can feel some pains in the breast, but it's very bearable at this point.
I can't tell about the fatigue because I had a deadline this week and I've been working too hard. However, I am training for a 100-mile ride in support of a breast cancer network in October, and I've been riding a lot of miles, so the fatigue can't be too bad. My only concern is that the ride is October 25, shortly before I am done with treatments. But this is how I channel my stress-- the ride makes me feel like I am doing something positive with all this.
tchmusik: Congratulations on your tumor marker results!
Jeano: I actually asked about the IMRT because I had seen it with my research. My rad onc does use it for left breast tumors to avoid exposure to the heart. So be glad: it is newer technology and you will get more control over your radiation exposure.
My oncologist is also recommending Arrimidex, but I am nervous because I lost 7% bone mass in my spine since my previous bone scan. I'm going to ask about Evista. I am definitely post menopausal. Although for some reason I'm having night sweats again. It's weird-- I soak through my pyjamas.
Weekend's almost here! I'm working, but no rads.
Deb
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and CONGRATULATIONS TO NANCY D!
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Oh, Kathi, I left feedback, but your web site was truly wonderful. Post the link again for everyone!
My oncologist doesn't have neat ties. Actually, I think he's a great guy, but I really suspect that he feels uncomfortable examining patients! He's a tech guy. Lots of information, which I like, but I think he doesn't really want to actually see my breast. But the nurse is very caring, so she does that and it's fine.
But I love your description of the linear accelerator, etc.
Deb
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How are you today Ace?
I'm alternating creams now too - Miaderm and Aloe Gel.The aloe seems to be really helping with the redness. I put the Aloe in the refrig. too - oh it feels good - so cooling.
Yea, tomorrow is Friday!
Hugs for everyone!!
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