July 2009 rads group
Comments
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Lolly: I had a mastectomy with a tissue expander put in and am going through rads now. Today was 17/33 and my skin is fine so far. My surgeon said I didn't need radiation but my oncologist and radiation oncologist said, "YES". If there is any node involvement you want to keep being aggressive. God bless you while you make this decision.
Leah: I so enjoy reading your posts. This thread has really helped me through these last few weeks. The eyelash and eyebrow thing was so hard for me too. I have about an inch of soft white hair on my head that my kids love to run their hands over!
Way to go Kim and dkhancock!
Hang in there fellow Rads Girls xox
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Thanks Maureen5-- I know--that is the dilemma --i did have 2 out of 30 nodes but tumor was <1 cm just dont fit into any protocol--different opinions from eveyone--will let you know
Leah--I just finished my chemo last week so no hair growth expected for a while but definitely see my eyebrows and eyelashes going(NOt growin but going!!! ) glad to hear they are the first to come back--figure it will be at least november or december before I can go without a wig--hang in there!!
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I also enjoy reading posts here. I had chemo and a single mastectomy w/no reconstruction. Leah: I also handled the hair loss and mx fine. My eyebrows were the worse for me. I lost my eyelashes right away after I started on Taxol. It was a full month after the chemo was done when I lost my eyebrows. They were in the next week, but I guess I thought since I didn't lose them when I did my eyelashes, I wasn't going to lose them. I teach kindergarten and I stopped wearing scarves as soon as my hair covered my scalp. I had one little boy that would hug me every morning as soon as he came into the classroom and as he was talking to me would rub my head the whole time. My 6 yr. old granddaughter would ask me to take my scarf off to rub my hair. My last chemo treatment was March 19th. I have a little over an 1 inch of hair all over now. I massaged my scalp and put olive oil hair treatment on it before my hair covered my scalp. I used to have thick, coarse, dark wavy hair with a little white in it before. What was really funny is that the back of my hair came in all dark brown and the front was all white. After it was about 1/4" long, the dark brown started coming in the front. Now it looks like I have red in the front, too. It is starting to be wavy and flip up on the ends. I don't think it is long enough for curls I hear about. Maybe I won't get curls, I don't know. It is just strange how it comes in. It isn't as soft as it was, but still softer than before. I was so glad to get hair back!
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Eyebrows? Eyelashes?? What are those???? I remember the day i sent to put mascara on (which i don't use very often to begin with), and realized i didn't have any eyelashes! I finished chemo (Taxol) 6/4 - my hair started growing back during treatment and is now about an inch, white and very soft.
I'm about half way through rads and my breast is very red, burning and had a rash - rad onc RN said she thought i was allergic to Miaderm i was using. I switched back to plain aloe and it seems to be calming down a bit, but need something to moisturize - Someone recommened calendula teabags - i think I will try that as well.
Leah - I love your posts - you're getting close to the end of treatment, aren't you???Congrats to everying finishing today - Kim and i don't remember (huh, could this be chemo brain?) the other woman's name - but congrats!!!!!
Love & Light to all~
Andie -
I posted last Thursday saying I'd just noticed some skin peeling in my armpit and under the breast around treatment 24 which was Wednesday. Since then the skin deterioration in the armpit has continued - peeling, oozing, ouchy. When I saw the doc and nurse yesterday, they gave me Radiaguard lotion and mepilex pads - these have made a world of difference. The mepilex is like a large band-aid but has a silicon layer so it doesn't stick. I highly recommend asking about these if you develop skin troubles.
Today I had my last session of full breast radiation and the planning session for the boosts - I moved to a different machine and room which is much nicer - it has a flat panel screen on the ceiling displaying art! But the best part of the session was finding out that my boost field will not overlap with the worst areas of my armpit. The rad onc himself came to check on that - if there had been overlap, I think I might have gotten delayed a day in finishing. As it is, I only have the five boost treatments and will finish next Tuesday on my 25th wedding anniversary!!
Cheers to all as we get nearer and nearer to the end of treatment road!
Tricia
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Today---23 down and 11 to go. I am very pink, itchym, and uncomfortable in one area. I'm using the Silvadene. At this point I'm wondering if I will be a blistered mess in 11 days. They don't seem to be alarmed at the treatment center so I guess I'm ok. Congrats to all that is almost at the finish line with Rads. Won't be a moment too soon...ahhh breast cancer sucks.
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#25 for me today, then 3 more regulars and 5 boosts. I'm using a product called RadX
and so far I'm just slightly pink. I have the sleep issue too. It's weird because for the first weeks I could sleep and sleep anywhere anytime..I too am not into the routine of it. I hate it every day.
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Leah....I have everyone laughing at how excited I was to shave my legs last week. I just told them that when you haven't had hair anywhere you get excited to see it grow in. Eyebrows and eyelashes are coming in too....but the most puzzling thing is my hair. It is also about 1/4 inch long now and pure white. I was always blonde by choice but didnt think that I had so much white. I look just like my mother (which is not bad, she was had a lovely head of silver white hair) but I just was thinking that I was too young to have white. Going to keep it short and sassy and decide later what to do with it. I am just happy to have hair and look forward to not having to wear my "hairy hats" anymore. Today is day 18 of rads and I am a little pink. Also yesterday I guess that I was not completely dry after applying aloe and later last night I had to peel my camisole off from under my breast. OUCH!
Have a wonderful day all and congrats to all who have completed treatment!
Deb
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#21 of 34 done! Finish line is getting closer.
I also have about 1/4" of white hair - completed chemo 6/4 (TAC X6). I lost my brows and lashes about 6 weeks after chemo. Mine are such a light blonde that it took me a few days to notice they'd flown the coop! I kept getting annoyed at my mascara for not working, bought a new one, and when that one didn't work either, I looked closer and realized I only had about 5 lashes left! I had to laugh. I've drawn my brows in since age 20, so it hasn't been a huge deal.
I do have leg hair back, but it is such a thin, nearly invisible blonde that I don't think I'll bother shaving anymore. Same with axillary hair. We'll see if it eventually comes back darker.
I know I said that I got into the routine of going to rads - but by no means do I like it! I drag my feet every day, especially towards the end of the week. It is a huge inconvience to my work also, as I can't really start anything until I go to rads (I work at 6am, leave for rads at 9, then get back about 10). I will be soooo happy to be done with it. Luckily it is going by fairly quickly.
Congrats Kim & Debbie on finishing up! That is wonderful!
Good luck with your decision lollys! I know it is difficult trying to decide what to do when you're in a gray area. (((hugs)))
Janine
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Well--I met withthe rad. onc--even more confused--very nice man--agreed as everyone thatit is up to me--he of course said if it were him or is wife he would do the rads--He gave me another choice(lovely) I could do just the chest wall area and no nodes since i had 30 removed and the chest wall was a concern--but I did have lymphatic invasion so better to do everything (what in the world was the 4 months of aggresssvie chemo for ???) anyway if i dont do the nodes better as far as preventing lymphedema andother complications but then I think why do things half assed(sorry) anyhow you can see I am a little cynical this morning--especially since i am the one that has opened this can of worms -- I think I should just give in and do the whole thing and pray for the best--I was not this scared of chemo just really scared of the rads and permanent side effects--nice to see all of you are doing ok--(except for the topical problems) I just worry about the long term stuff that is out there although low % anyhow hope everyone has an easy day --also he said 6 weeks plus 3 boosts the other rad. onc in his center said 5 weeks --Ihave to clarify that --that did not give me much confidence in their protocol--very confused and frustrated today!!Lolly
Thanks for listening -
Hi all and congrats to the rad girls who have finished! Awesome ...
Leah and Lolly ... I have about 1/4 inch of very soft "salt and pepper" hair. Had my last round of chemo on June3. About a month later, I lost my eyebrows and eyelashes. Eyebrows are back in force and yesterday I put mascara on my little lashes for the first time! Losing the brows and lashes was such a low blow! I had an awful time dealing with it. Someone told me that when they lost their brows and lashes it felt like they had been "erased". True, don't you think?
I have four more treatments to go and my skin is starting to suffer. Saw the doc today and she said my rash is called folliculitis. Anyone have this? It feels like I have bits of fiberglass in my skin. OUCH! and very, very itchy.
Hugs to all,
Nancy
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Nancy, I had folliculitis on my head during chemo. It was very uncomfortable.
This time (on TC) I didn't lose my eyebrows or lashes but they have thinned out considerably. When I was on CEF I lost everything. During this chemo a few hairs stayed on my head - not many but a few. But so far nothing is growing back at all. I don't see any fuzz or anything. I'm starting to get worried that it will not come back. Maybe having chemo 2 times in 4 years was too much!!!!!
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nwood450 - You sound about the same place as I am, although I didn't need chemo. I have 5 boost treatments left and my skin is just this week making me anxious. I have had a rash on the upper inner treatment area for about 2 1/2 weeks. The doc said it was from the rads and how the skin was reacting to previous sun exposure. He gave me some lidocaine ointment for the itching which didn't really help. I have a small area at my bra line (although haven't really worn a bra since my lumpectomy) that is very raw. So far not weeping. I'm just keeping it very greased up. For my nipple crack he recommend bag balm and said to use it on the raw area too. Good luck with the rest of your treatments. We just moved here from the South Shore so when I read your posts I get homesick.
Becky
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Hi girls
Well, I'm done rads! I was so excited to go yesterday and be done. After rads, I meet with the onc and that it was - snot and bawling session started. Where did that come from? I was so excited to go and I took one look at him and broke down. Normal he told me, absolutely normal. I was a wreck! I guess it is a combination of "glad its done" to "is it enough" feeling all one time. Today, I'm still feeling kind of anxious, but not so bad. It is going to take a while to get back to a "normal" routine as the past 8 months have revolved around BC. I still have Herceptin, so I will be dealing with the hospitals for a while yet, but I do feel kind of abandoned. Scary, very scary.
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kim40 congratulations on being done!!! i am sure you have mixed emotions--just know that you have done everything you could and that will give you peace of mind--that is how I am convincing myself to do radiation eventhough in my case (see above) it was my choice whether to do it or not-- I think i have finally decided after much anguish-(why chose something that we have heard so many sideffects about and is so debilitating) but when it comes down to it we just have to do everything we can and pray we have done the right thing!!hang in there be strong, be well --Lolly
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I finished #8 of 37 today. The only pain I am having is in the muscles around my neck they are tense and tight on both sides in the back. Has anybody else had this happen? Otherwise I have not had any problem with rads. They gave me biafine to use 3 times a day. Since my rads are at 1:00 I can use in morning when I get up, again after rads and again at night. This is the only thing they want me to use. I have noticed that none of the oncs, med or rads here are very flexible. Nice but they sure think their way is the only way to go. The medical onc told me that there was no way that my leg pain was still happening from the taxol I finished in May. I am sure it is, and pain doc said it is from the nerves that were irritated by the taxol. I wanted to tell onc I knew what I felt like before, during and after and knew when the pain started and what they felt like- not him. How can they possibly believe that there are no lingering pains after chemo?
I hope all of you get to see less and less of your docs too. Annette
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Hello ladies!
Just wanted to share a little skin "dressing" trick that I discovered the other day. A little background...I haven't been wearing a bra since the second week of rads, but when I run I do wear a sports bra to prevent any chaffing. Well, I got caught in a downpour and completely soaked through my shirt and sports bra. The wet bra on the pink skin was not a good combination and I ended up with an itchy pimply patch on my chest. At work, my normally comfortable cotton shirt rubbed up against the area and made it that much more itchy. Out of desperation, I grabbed the lotion I had in my desk drawer (Aveeno Daily Moisturizing Lotion- fragrance free) slathered it on thick and then peeled apart a Kleenex and pressed one thin sheet onto my chest. The lotion kept it in place and the Kleenex protected my skin from rubbing against my shirt. It worked like magic! The oatmeal in the lotion stopped the itchiness immediately and when I peeled the Kleenex off at the end of the day, my skin was completely healed. I still use my Aloe Vera gel after rads, and calendula cream after showering. But now at bedtime I slather on that Aveeno and my Kleenex "dressing" instead of the greasy Aquaphor that I was using. Today my radiation techs remarked that the condition of my skin is much better than the typical at this stage. Woohoo!
2 more regular treatments and then a week of boosts! And then on to the next adventure of tamoxifen...
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NanaA my onc said to drink tonic water for cramps, I get them in my hands and feet. I believe that its the quinine that helps. It really works, I was very surprised. I have my MiL and best friend drinking tonic water (with out the gin), they said it helped them too.
To all who have finished rads congrats!
kathy
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Hi all,
Had a lousy night. My breast was so red, sore and itchy. The folliculitis is very uncomfortable. But also, my breast HURT ... inside. The pain radiated down my arm. Have pain in the incision from the axilliary node scar. Today at treatment I could hardly raise my arm over my head. The area feels so tight! Ohhh ... three more treatments to go. Can't wait til this is over. Feeling very, very anxious and weepy.
Becky ... seems we are about the same. If it makes you feel less homesick, we have had a very wet and humid summer here.
Leah ... thanks for starting this thread. I love reading your posts. You have a wonderful way of expressing yourself with compassion, clarity and such depth of feeling. Thanks!
Congrats to all of us~
Nancy
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Nancy,
Hang in there. You are almost finished! I had tx 23 out of 30 today. Two more until the boosts start. Today I look very red and feel itchy all of a sudden. I am sitting here with hydrocortisone over my aloe and gauze pads on top of that. It feels better. I too live in Ma. and think the recent humidity may have made things worse. I always look worse when the weather is like it has been this week.
I have the xrays for my boosts tomorrow and don't look forward to laying still again for any longer than I have to. I'm sick of this and sick of being so upbeat! Congrats to all who are finishing or getting close. It has been quite a way to spend the summer. Still, I am feeling nervous about flying solo without the radiation treatment team after next week. I have felt very well cared for during this time. Hugs to everyone.
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Thanks girls - it is a great feeling to be done and have that chapter put behind me. Before you know it, all of you will be done as well. I found that the time went rather quickly. I'm still of work, planning on going back in January. I figure I need this time now for myself and my family. It has been nothing but a blur for me since January so now I can TRY to relax a bit.
I used Aloe Vera faithfully during rads and didn't have a hitch with it. My skin is bright red in color, but not too bad. I have a pool and it has been so hot here, I've been wanting to get in! No pool during rads, but once my skin settles down a bit, the rad onc has given me the green light to jump in. So now, I'm looking forward to next week, when I can cool off!
Susantc - I know how you feel about flying solo. I'm experiencing the same anxiety as you. A lot of emotions will definelty come forward once you are done. I felt a little anxious also when completed chemo. As my onc put it, we have been through the ringer and it is normal for us to feel this way once treatment is complete. We are going through a stage of mourning. We miss our old life, but just think, we will now have a new normal where we won't be taking things for granted ever again, and for that I am thankful.
All the best everyone, and hope everyone is able to resolve their skin issues.
Take it easy girls, I'll check back later.
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Nancy, so sorry you had a bad night. Your night sounded like my afternoon and evening yesterday. Probably the worst pain I've had in the breast since the surgery. Felt like glass inside my breast and on fire. Couldn't stand anything touching my skin so sat around all evening topless! I kept smearing the bag balm all over and finally today feel less itchy and tight but still is a constant reminder. Also, feeling more anxious and weepy too. Can't wait to be done and think about something other than BC.
Becky
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Susantc
I noted you will have 5 boosts after your #25, 30 altogether. I wonder how these numbers are determined. Anyone know? I have to have 28 regulars and then 5 boosts. At this point,. # 27 today, it may seem irrelevant but I would soooo love to be finsihed at #30!
Love to all who are going through this.
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Going for # 20 today, getting there. Red, itchy, and sore but sleeping a it better the last two nights. I am glad the garden is going, it is hard to push myself to pick and preserve by canning, pickling, or freezing but it helps keep me occupied too. My hubby helps a lot so it is nice to work on it together. I usually make several wines every spring but have not been able to get into it this year. We made our first one of the year currant. We have not made this one for a few years so it is nice to think about something besided the cancer. Hope all have a good weekend and can enjoy the break from treatment. I not only like the break, I love not having to sit in the car for 3 1/2 hours!!!
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Hello Everyone,
My last rad treatment is within sight and as much as I want to be done with everything BREAST-when do I start thinking about reduction of one breast and reconstruction of the lumpectomy breast?I was a 42D, now I am smaller on one side and would like to balance again. What if I get cancer on the other side? How does that work with breast reduction? How long should I wait to begin this aspect of returning to normal? How much time will I need to get back to work after this surgery? I am just trying to figure out how to get this into my school year. Thanks for your help. Lori
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nanabolini,
I asked my radiation oncologist that very question about how they got the treatment amounts recommended. She said that it's just through research and data collection regarding what has been successful over time. I have a feeling that it is a very cut and dried protocol in many ways and probably has a lot to do with the philosophy at your treatment facility. I had DCIS, stage 0 - no microinvasion. I think that gets you 30 treatments, 5 of which are boosts. My friend has DCIS but she had some microinvasion, and she is doing either 33 or 37 with five boosts included, I can't remember which it is. I had the planning for the boost today. After one more regular tx on Monday, I will start that. The area is much smaller and leaves out some of my most red spots so I'm looking forward to getting back to normal sooner or later. I'm able to wear less and less of my tops as this summer continues. The end is near for many of us.
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Hi Everyone,
Only 3 boosts left! I had 25 reg and am completing the remainder of my 8 boosts. I never asked how they come up with that number. I was Stage 1, had breast conserving surgery (also known as a partial mastectomy) and was node negative. I'm just glad it's almost done.
Roseann
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Hi. Have you checked out your options in the prosthetic choices? Sometimes you can find a good solution that looks and feels good. It can give you time to put off any more surgeries, etc., give you a long pause to regroup. They are very expensive; some insurances cover them, some don't. But if you go and get a professional fitting, and insurance doesn't pay, you can get a copy of the fitting results, and contact the local Amer. Cancer Society office. Usually there is a place where they have donated bras and prostheses, and you can match up to what you need. I must say, this beast of a disease does tap into our creativity, and that's good, right? Blessings, Marykay
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They did tell me when figuring the boosts they do use a formula. 25 regular seems standard and the boosts are to the the surgery spot and the path they used to remove the tissue. This is the most likely time for cancer cells to have gotten spread is when they were removing the lump, I am supposing the size of lump and if it had clean margins the first time would have something to do with number of boosts. Mine did not get clean margins till 3rd time, so 12 boosts are on my agenda. He said no matter where I went that is the same number any place would come up with for me and my history. Breast density might be considered too? I will just be glad to be done. I had # 10 of 37 today. Annette
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Congratulations on you Ladies who are finishing rads this week - and for those still in the process Hang In There.
I have also had some side effects that are similar to the ones stated in the thread - major itching, Fuzzy head, trouble sleeping and pain under my arm and at my incision site. The pain is deep within the breast and feels like "ripping" when I move at times (especially at night) and is very tender to the touch. I am hoping that now that I am 2 weeks completed rads that it will soon be subsiding. The redness is calming down a bit, I still have some red patchy areas and the skin is peeling - it looks beautiful. All-in-all not too bad though - much better than what I had expected.
Hope all are doing well, you are in my thoughts and Prayers.
Lynn
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