September 2010 Rads

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  • bubbalu
    bubbalu Member Posts: 177
    edited September 2010

    I had both AC x 4 and taxotere x 4 and after the 2nd taxotere I developed neuropathy in my toes and finger tips.  Ankle edema too.  I'm almost 4 months done with chemo and still have them all.  The edema is now the most trouble.  If I sit too long my ankles are so painful I can't sleep and they itch and the skin is tight.  Forget the warm baths anymore, only tepid and short.

    My dr. said that lasik won't help because it's outside the veins.  Only time and walking and elevating.  If you have to stand for long periods of time he said to go up on your toes a lot while standing.  Sometimes I still can't sleep from legs itching.  Taxotere is well named, it's taxing and it tears you up!  All this will pass in time. AND I used the icy gloves and slippers during treatment.

  • dutchgirl6
    dutchgirl6 Member Posts: 673
    edited September 2010

    Shelley, it's my right heel as well.  I still think that it is plantar fasciitis, since I seem to recall that I had the same discomfort a hundred years ago, before treatment.  The clinical trial is Metformin, here is a link:

    http://clinicaltrials.gov/show/NCT01101438

    Bubbalu, I love your description of Taxotere, you are so right.

  • dutchgirl6
    dutchgirl6 Member Posts: 673
    edited August 2013
    MelBell, how are you feeling today?  I have been using a product called GlaxalBase, and it is working wonders.  It is water based so it isn't greasy at all, but is quite rich and creamy.  It comes in two formulations, lotion and cream, I prefer the lotion as it is less sticky.  I know that it is a Canadian product, but I'm pretty sure that it is available at some U.S. drug stores.  The web site is www.glaxalbase.com
  • susanthur
    susanthur Member Posts: 11
    edited September 2010

    congrats dutchgirl6.  i had to have 30, 25 over the entire area and 5 boost ones on the incisions.  i had to start taking tamoxifen the next day after finishing rad. my doc. told me that i would need something for hot flashes...but no...i would be brave and i was sure that i could endure it. i couldn't. i now take the generic effexor.  it works wonders, i only have baby hot flashes now. the effexor bothered me for about 2-3 weeks, sick feeling, then after it got into my system, i am fine now.

  • Marie2
    Marie2 Member Posts: 30
    edited September 2010
    Hi Ladies, I find this site so helpful, inspiring, and the best place to vent and exchange helpful hints and encouragement. I just want to add another option to the creams and lotions menu. I am on treatment 10 and have been using a combination of aloe and udderly smooth udder cream. I have occasinoally used the aquphor but it is rather greasy so did use it only at night but lately have been just using the udder cream. I like it because it does absorb and really leaves my skin feeling soft and hydrated. Just thought I would share, hope everyone is having a bareable day, keep your chins up this too shall pass. Cool
  • dutchgirl6
    dutchgirl6 Member Posts: 673
    edited September 2010
    Hi Marie2.  I agree with you about the Udderly Smooth, it is fantastic stuff, one of my personal favs.  However, it does have a mild scent, and the centre where I was treated is a scent free facility, so I couldn't use it.  Also, it contains lanolin, another product that I was told to stay away from.
  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2010

    I find the environmental working group cosemetics database extremely helpful when checking the safety of body care products

    http://www.cosmeticsdatabase.com/

  • Marie2
    Marie2 Member Posts: 30
    edited September 2010

    dutchgirl6   you are absolutly right the udderly smooth does contain frangrance, however aquaphor contains lanolin (lanolin alcohol) as well. I can only say it has worked great so far for me, I am not sure if it will continue to work as well through the next 25 treatments but we will see. If anyone is interested in trying it they can/should check with their onc rad first. It is so great to have so many women on these sites to compare notes with as we are all different with different issues and what works for one may or may not work for another. To at least have the option to find something that might work for you is so helpful in trying to get through this BC thing, I am thankful for you and all the ladies that contribute to these posts.

  • jsmiley60
    jsmiley60 Member Posts: 204
    edited September 2010

    Shelley: I don't agree with your onc stating that if your heel was neuropathy it would hurt not be numb! I had neuropathy in my left foot and big toe. Sometimes the toe  would be numb and sometimes hurt! I finished Taxol in April and the foot and toe issue is gone....tapered off about a month ago.

  • sespebadger
    sespebadger Member Posts: 249
    edited October 2010

    Just finished 28 treatments to whole area today and start 5 boosts tomorrow. I find that if I keep busy during the day I don't think about pain in my skin. But at night.....that's another story. Last night I took two Advil at bedtime and felt uncomfortable but got to sleep. I woke up at 1:00am and really felt my lymphectomy incision and the most sore area of skin on my chest. No getting back to sleep. Luckily I had a pain pills leftover from my surgeries. I took a generic Darvocet and it helped right away. I asked the nurse at the rad office today if I could get a new prescription (as I only have two pills left at home) and he said absolutely yes. I will take one at bedtime tonight and see if I need another midway through the night (you can take one every 4 hours). I share this story so you will keep track of your pain level and not get stuck without relief on a weekend. There's no need to suffer, in my opinion. My sore thumbs continue to be a problem at night but not during the day. I'm thinking the Darvocet will help with that. And I HOPE the thumb pain goes away after I'm done with radiation.

  • shells43
    shells43 Member Posts: 1,022
    edited October 2010

    JSmiley - thanks for your response. I'm really not sure, so if I continue to have it, I'll mention it again at my next visit. Right now it is not too bad, but I'm glad to see it should wear off pretty soon.

    I had my 12th rads yesterday and the tech looked at me and said when I see the Rad Onc on Monday he will probably need to give me a break. I'm really getting red. Wearing the sports bras now and hoping my lab coat covers this sin! 38C+ does not do well in a sports bra. Plus, if wear the foob on the one side, I really don't match at all. Oh, well. I'm using all of the creams recommended, Aquafor at night, Aloe in the morning and after treatment. They gave me a sample of Miaderm, so I'm using that some, too. It smells nice and isn't greasy.

  • DMS
    DMS Member Posts: 51
    edited October 2010

    Dutchgirl6-  Congratulations on finishing radiation.  I can't wait.  Had my 22 treatment today; 9 left- 2 more full breast treatments and 7 boosts.  Skin is a little pink but not too bad.

    JSmiley60 -  Glad to hear you reached your half way mark.  Celebrate.

    Looking forward to a rad-less weekend!! 

  • sespebadger
    sespebadger Member Posts: 249
    edited October 2010

    Went in for first boost today. Nurse looked at my skin, which is now purple, and said I could call in  Monday and ask for a break if skin looked worse. I asked about how much break and she said sometimes they give people a week off between treating whole area and doing boosts if their skin is very sore,etc. I said I'd sure like to do that if it doesn't make any difference as far as effectiveness and she said O.K. So I have next week completely off and will finish up the following week. I am THRILLED. Moral of the story: ask for help when you need some relief. Last night I took 3 pain pills, one every four hours. I can stand the pain during the day, but I am glad to have the Darvocet generic for nighttime. I'm still slathering on the aloe gel.

  • BocaCiegaBabe
    BocaCiegaBabe Member Posts: 98
    edited October 2010

    sespebadger...OUCH!  I love the color purple, only not on my skin!  I'm sorry you are so sore, but happy for you that they are giving you a break.  It sounds like quite a reaction.

    DMS, we started together, but I think I go longer than you.  I finish up the 18th or 19th, and now no longer remember how many full treatments and how many boosts.   Wish I'd written it down.  Glad you are doing well...you are almost there!

     When I asked my techs if my skin was doing better than the norm, they said it was.  22 down now, and the red rash is the worst of it, but hydro-cortisone took the itch out of it, and a tiny bit pink otherwise, but nothing bad.  They mentioned that some people have more aggressive treatment than others, so that may be part of it?  

    Everyone have a great weekend.  It will be so nice to have this over with so maybe I can not think about cancer every day!!!  It's getting to me. 

  • caltex_catlady
    caltex_catlady Member Posts: 136
    edited October 2010

    Yay! Thursday was my last day of rads, and the last day of all treatments, unless they come back and tell me there's something else to do beyond surgery, chemo, and rads. I think I've thrown the kitchen sink at it pretty well. My DH and I had a nice chocolate cake to celebrate.

    My skin got quite red the last week or so.The nurses and rad onc kept telling me it looked pretty good for that point in the treatment, but I have developed a few little blisters, and I was having lots of discomfort, especially at night. They said I could take some of the vicodin I had left from chemo pain, and when that ran out, they gave me a new prescription. If you're in pain, it's really worth a shot to ask about what you can do rather than suffer. I tend to try to tough things out, but I've learned over this whole process that it's not worth being in pain if there's something you can do about it. I just take the vicodin at night, and it seems to be doing enough to help me sleep a little better. I've got to have sleep to heal up. If you don't like to take prescription painkillers, ask your doc or nurse if you can take Advil or Tylenol, maybe even in larger doses than the packaging says.

    And when I had my discharge discussion with the nurse and rad onc after the last treatment, they said that, although the skin was looking pretty good, there were some blistered areas that I can do something with to try to avoid what they called "moist desquamation." Basically, that's where the skin peels while the new skin underneath is still raw and weeping a clear liquid. (Dry peeling is normal and expected.) I don't have that yet, but I'd just as soon not. So I have this 8-10 step process (I can't imagine doing this in the morning before work) that includes greasy stuff like Aquaphor and petrolatum gauzes (another reason I can't imagine doing this before work). I went through the whole process last night and again this morning, and will do it 2-3 times a day over the weekend. I'll probably just do it at night after that. Actually, a couple of the steps I only need to do for a few days to dry out the worst areas.

    I go in for a "skin check" with the nurse next Friday. If all is well, then it's just a visit with the rad onc in six weeks and the rest of my care with the medical onc.

    I hope everyone is doing well and that you all have an SE-free weekend.

    Karen

  • sespebadger
    sespebadger Member Posts: 249
    edited October 2010
    I'm finding that at night my Darvocet pill does not get me through 4 hours any more. The first night I took one (after treatment 27) it worked, the next night (after #28) one pill would give 3 hours relief and last night it seemed to only help for 2 hours. I don't like taking too much.....but I was really uncomfortable. My skin was very hot and and sore. I'm a very level-headed person, but this pain was making me feel a bit frantic. It's possible in the daytime to ignore the pain, but not at night, so I figured I could take a little extra meds at night and try not to take any during the day. I also used ice in a ziplock bag wrapped in a soft tee-shirt and kept moving that around on the whole area. My rad office gave me instructions that said NOT to use ice, but I was feeling rather desparate for relief in the middle of the night. I will ask about it Monday (by phone). I am SO glad I got this coming week off from finishing my last 4 boosts. I think I am experiencing what the nurse originally told me which was that side effects continue and can get worse for a short while after radiation treatments. I hate to think of how badly I would have been feeling by next weekend if I had not been given this break. 
  • dutchgirl6
    dutchgirl6 Member Posts: 673
    edited October 2010

    Yay Karen! congratulations on finishing with the rads, great feeling, isn't it?  I'm sorry that you are struggling with skin issues, I hope that your 10 step programs helps get it under control. 

    It sounds like Karen isn't the only one dealing with skin problems.  Shelley, maybe a break is a good thing for you right now. Is it because of the bolus?  Sespebadger, enjoy your "vacation" from rads, hopefully it helps.  

    Isn't it great to to see so many of us getting closer to being done?  Hang in there everyone.  The finish line is getting closer every day.

  • shells43
    shells43 Member Posts: 1,022
    edited October 2010

    Hi Karin,

    I think the bolus, now fondly called "flubber" actually helps, as it absorbs some of the radiation. I got an unintentional break on Friday because the machine broke down. So I get 3 days to recover. Will see what the doc says on Monday. It's not too bad right now, but the edge of my foob sticks out of the bra pocket and rubs in my armpit, which is very irritating. I don't think I can keep wearing it! Not good.

  • MelBell07
    MelBell07 Member Posts: 106
    edited October 2010

    Hey ladies. So the skin in my underarm area got worse...the skin opened up and now that spot is really red and gross looking. The nurse had given me some ointment (I forget the name, I left it at my bf's house) to put on that spot, and it dries it out. Why that helps, I'm not sure. But it's hurting quite a bit, so I'm very happy they're giving me a break from the axillary area and doing my boosts next week instead.

    Hope you have all had a nice weekend thus far! Happy Breast Cancer Awareness Month!! 

  • bubbalu
    bubbalu Member Posts: 177
    edited October 2010

    shelleyj43  Humm they told me the bolus helps pull the rads up from your heart and lungs, protecting it.  Brings it more to the skin.  It tricks the computer to thinking there's a breast there.

    Tuesday is my day in Philadelpia at the Perelman Center, I'm hoping for some answers about the radiation treatments continuing or not continuing and MORE!

    Please keep me in your thoughts and prayers. 

    To all of you sistahs who have finished - YAY and double YAY YAY.

  • Teka
    Teka Member Posts: 10,052
    edited February 2012

    bubbalu,

    May Tuesday be your lucky day.

  • swiftbird
    swiftbird Member Posts: 177
    edited October 2010
    bubbalu, hope you get some good news and answers tomorrow.  We'll be thinking positive thoughts for you. 
  • MelBell07
    MelBell07 Member Posts: 106
    edited October 2010
    Good luck bubbalu! Sending lots of positive thoughts your way!!!
  • jsmiley60
    jsmiley60 Member Posts: 204
    edited October 2010

    Bubbalu: good luck tomorrow, hope you get lots of answers!

    Shelley: Yes I haven't been able to wear my foobs for a couple weeks. I quit wearing a bra last week but then was having extreme muscle pain on the left (radiated) side that I wore a tank top with bra in it all weekend. Tried to wear sports bra this morning and it hurt under my arm so had to tank top bra back on. I hate not being able to wear the foobs when I'm out in public!

    I felt miserable this weekend! Friday night fatigue hit including weepiness, muscle soreness and rubbery legs. Oh boy thought I was back on chemo for a minute there. My left side chest muscle was so sore it hurt to drive on Saturday. I kept putting ice on it because I didn't know what else to do. It is still sore but I will see the radiologist today, so will ask about it. I have been taking ibuprofen as often as possible. I have te's in so I'm always a little sore or uncomfortable, but not like this, plus it is only on the radiated side. Ugh! I'm hope I'm not like this every weekend.

    Only 19 more treatments to go........gotta keep going, one day at a time!

  • rcca
    rcca Member Posts: 59
    edited October 2010

    I'm done with rads, and I mean my breast looks well done. Ok, enough of the puns, it's burnt, but not peeling. I'm told it might get worse before it gets better.  I have an appt with my onc on Wednesday and one with my surgeon on Thursday for follow-ups. I hoping for a break after that so I can try to move on.

    Good luck to all of you with your treatments this week.

  • dutchgirl6
    dutchgirl6 Member Posts: 673
    edited October 2010

    bubbalu, good luck tomorrow, I will keep you in my thoughts.  Here's hoping that you will finally get the answers that you are looking for.

    How are you holding up MelBell?  Is your skin responding to the break from treatment?

    Congratulations rcca.  I hope that your skin doesn't get much worse.

    I have to go to the cancer centre tomorrow for a meeting with the clinical trials nurse, it will seem strange to not head into the radiation area.  The good news is that all the sharpie marks have finally faded away!

  • BocaCiegaBabe
    BocaCiegaBabe Member Posts: 98
    edited October 2010
    Thinking about bubbalu.  Hope there will be answers!! positivevibespositivevibespositivevibes
  • shygal
    shygal Member Posts: 89
    edited October 2010

    I also finished my rads yesterday and I am very thankful.  My aureola and nipple are much darker (and look larger?) than the other breast and the pores on my radiated breas look like dark dots....very itchy and quite tender.  I am finding the fatigue surprisingly more intense than I expected and if I don't have a nap in the afternoon, I am a mess.  I was able to extend my work leave because of this and will have the next month or so recuperating which the Rad Dr and staff highly recommended.

    I'm glad that no one will be drawing on my chest anymore...for some reason that really bugged me.

  • sespebadger
    sespebadger Member Posts: 249
    edited October 2010

    During this week break between 28 rads and boosts I am finally sleeping better with less pain at night (Fri, Sat and Sun nights were hard). Woke up this morning (Tuesday) to find an inch square piece of skin had come off under my arm....very pink and owie, but not bleeding. I hope this doesn't happen all over my breast. I am very tired and don't feel like doing much. Sooooo glad to have a break this week.

  • KaeB
    KaeB Member Posts: 6
    edited October 2010

    I also developed the purple skin under the armpit. After radiation the nurses now put a dressing of thick lubricant and gauze under the arm. Still trying to figure out how to keep it in place so I can move my arm. We did not use the bolus today. (yes it is suppose to trick the radiation into thinking it is skin so the full force of the rays are applied to the skin) I have one more rad tomorrow without the bolus and then 12 boosts for a total of  38 treatments. I was told the skin is usually about a week to 10 days behind reacting to the radiation which is why it continues to get red when we are done.

    I am having trouble with my medical leave. Well not the leave exactly but they want to cut off my medical benefits. I could pay the COBRA but that is twice as much as my income. Don't know how they figure you can still pay your bills! Will have to go back to work with only a week break after rad. Am not looking forward to it but what can you do.

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