September 2010 Rads

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  • dutchgirl6
    dutchgirl6 Member Posts: 673
    edited September 2010

    Hi deborrob.  I'm sorry that you are feeling so down about radiation.  You didn't say when you finished chemo, or how much of a break you got before starting rads. but I wouldn't be surprised if the way you are feeling right now has something to do with residual side effects from the chemo.  Your body is still trying to recover, and now they are throwing radiation at you, and that's no fun.  I think also that just the reality of having to do this every day for six more weeks is emotionally draining.  I'm very impressed that you worked through chemo, I don't think that I could have done it. You might want to consider taking that short term disability, your boss will get over it.  It will be better in the long run to allow you to take the time you need to have your treatment, and recover from it, than to have you continue working right now and possibly be unproductive because you feel the way you do.  This is the time to put yourself first.  Take care, and I am glad that you joined us on this board.  You will find lots of support and great advice.

    Karin

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  • sespebadger
    sespebadger Member Posts: 249
    edited September 2010

    Deborah, I've had similar course of treatment (lumpectomy and lymphectomy, followed by ACx4 every three weeks and then Taxol (weekly x 12). My chemo was a little more spread out than yours and let me be the first to say I think you you were extremely strong to go through that in a more condensed period of time and keep WORKING! I have been unemployed through this and grateful not to have that added stress. Anyway, I then had a BMX July 12. And then started rads end of August. Even though my doc said it would be easier than chemo, I DREADED more treatment and was scared of rads. I felt VERY tired after the first week and like you was very worried about how bad it would get. I still don't know exactly how bad it will get, but I am happy to report that after 19 of my 33 treaments I am sitting here with no pain, and I am not too tired to do what I want to do. No one knows how each of us will react to rads, but you may just be having a perfectly reasonable initial fear (that could cause fatigue) that may lessen with time. Also, the nurse at my radiation center said that usually side effects don't start bothering people until about treatment #20. I hope that will be the case with you. I've been using the aloe gel they gave me twice a day or sometimes more. I'm ready to ask for more help when that doesn't do the trick, and they assured me they could prescribe other things if I have pain, burning or itching.  The fatigue will probably arrive again, and I'll deal with that when I get there. Perhaps your nurse can give you advice to help you plan for your work. Good luck to you and know that those of us a bit ahead will keep reporting back and try to help whenever we can. And let us know if you have any more questions. We answer if we've had similar experiences.

    Welcome, Lorraine. I am very sorry you have to be away from home for your treatment, but I think you are smart to go for the very latest treatment for yourself. I'm wishing you the BEST.

    Bubbalu, I've been so sorry to hear of your difficulties with radiation. I know how much we want to fight this disease, and it must be very frustrating to not be able to continue with this treatment. I hope you find a good alternative. 

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  • deborrob
    deborrob Member Posts: 37
    edited September 2010

    Thanks Dutchgirl and sespebadger for your comments.  I finished chemo slightly over 3 weeks ago, and was just starting to feel human again, and now radiation has knocked me back down again.  Sespebadger - I was told the same - that se's don't usually start until the second week or so, that's why I'm so shocked really that I feel like this after 2 treatments.  I guess I just wasn't expecting to feel bad after 2 treatments - maybe after 2 weeks.  I don't know, maybe I just used up all my energy getting through chemo and I've got nothing left. 

     Dutchgirl, I'm thinking you might be right, and now might be the time that I just have to step back from work and get through the next six weeks without the stress of trying to do a job which isn't easy at the best of times, and dealing with a boss who isn't the most understanding. 

     THanks again to both of you for your comments.  I'll definitely keep coming back here for support .

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

    Hi! dutchgirl6,

    Do you remember anything offensive in JanetfromPgh deleted post on Sep16, 2010  04:28pm?  

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  • Joni57
    Joni57 Member Posts: 4
    edited September 2010

    Yes, I am at a radiation treatment center that has both men & women, I get who ever is available.

    But I have let them & my Dr. know that I am very uncomfortable with having the men do this.  although I have been reasured they are all professionals.  My Dr. is a man however 8 years of medical school is a little different than 2 years of a tech program.  they have the 2 women do my treatments as often as possible.  I guess more women are getting into this field.  However my advise to anyone going in the future for radiation is to check out the facility and ask who will be doing the treatments - not just meeting your Dr.  If I would have known I would have looked for a different center.  However, with only 2 weeks left to go , I am just sucking it up and going through with it.  (although if we are supposed to reduce stress - this is not helping !!)       

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  • DiamondGirl
    DiamondGirl Member Posts: 1,046
    edited September 2010

    Joni, I hear ya.  My rads are now postponed due to an infection.  My simulation was done by a guy and I wasn't comfortable (I didn't say a word).  And now I have my concern feeling uncomfortable with my 2 technicians (both women) that are not compassionate and do not communicate.  One has an attitude and makes me feel like I'm in a communist country.  When I ask a question (because I'm not forewarned when they were drawing lines on me), I will get a "one word" answer. 

    I remember reading the same thing over and over with different books (make sure you like your treatment team).  Problem is I have HMO and I'm stuck :(

    I will try to bribe them the next time though like other ladies suggested here.  

    Have a blessed week.

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  • dutchgirl6
    dutchgirl6 Member Posts: 673
    edited September 2010

    Teka, I have been racking my brains trying to figure out what it was that may have offended someone, but I can't put my finger on it.  She deleted her posting.  Janet did mention that she had a spot on her pancreas, and that it was a suspected malignancy, but other than that, I am in the dark.  I feel bad that she had a negative experience here, but we can't control what other people say, or their reactions to our comments.  I had hoped that this would be a supportive place for all of us, but I guess that everyone has their limits to what they want to read and hear.

    Joni, I understand your feelings.  At my first tx, being introduced to the team, there was a student.  He is young, early 20s, and his first name is the same as my son's, who is in his early 20s.  I was a bit weirded out at first, but I have come to the realization that he, and the other techs, are just doing a job.  They are all very professional and respectful and, after my initial discomfort, I am fine with him assisting with my treatment.  I am glad that they listened to you, and are able to accomodate your request as much as they can.  

    I hope everyone has a good Sunday, before we resume the zapping! 

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  • Dee2010
    Dee2010 Member Posts: 80
    edited September 2010

    I think the big thing for me with the technicians will be that they are compassionate (male or female).  They treat about 375 patients a day at the hospital where I'm going, so I'm not worried about their level of experience.  I've been poked and prodded so much at this point...

    I only start rads on Sept 28th, and am hoping it goes well.  I think I have an advantage in that I had chemo first (Jan-June), then surgery (mid-July), so I've had a chance to recover somewhat from chemo (although now I'm having a problem with my nails.) I'm also fortunate enough to be off work, which helps tremendously re: my energy and stress.  It allows me to really focus on recover, something I didn't do when I got thyroid cancer.

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  • bubbalu
    bubbalu Member Posts: 177
    edited September 2010
    Teka and Dutchgirl6:  JanetfromPgh said in her last post that it was in form of a 'private message' that upset her.
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  • dutchgirl6
    dutchgirl6 Member Posts: 673
    edited September 2010
    bubbalu, I believe that someone sent her a PM commenting on her earlier post, which is why she deleted it.  In any case, I think that we should respect her decision to withdraw.  Hopefully she is still reading, and getting the support that she needs, regardless which form this takes.
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  • jsmiley60
    jsmiley60 Member Posts: 204
    edited September 2010

    Deborrob: sounds like they didn't give you enough time between chemo and the start of rads! geez three weeks is not enough. that could be why the rads are effecting you so hard. and if your boss has a problem with you taking off work, just remind him that you worked all through chemo, which many people can't. And remind him of the Family Medical Leave Act! People aggravate me - I actually had to quit a part time job I'd only had 2 months because the chemo made me so sick and they were stressing me out with their attitudes! (they were too small for the FMLA to apply).

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  • DMS
    DMS Member Posts: 51
    edited September 2010

    Bubalu- so sorry to read that you are still having a reaction to the radiation.  My heart goes out to you.

    BocaCiegaBabe - I finished my 12th on Friday.  We will need to have a virtual celebration when we are both finished.  I hope you enjoyed Jersey Boys.  I went up to NY about six weeks ago to see it.  Loved it.  

     DiamondGirl -  Sending positive thoughts your way for a speedy recovery from the infection.

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  • DMS
    DMS Member Posts: 51
    edited September 2010
    Deborrob -  You've been thru so much and it is ok to feel down by radiation.  For what it's worth, I was emotionally exhausted for the first week or so til I was able to get the routine down, especially getting up an hour earlier.  I hope it gets easier for you.  
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  • AICa
    AICa Member Posts: 64
    edited September 2010

    New to the Boards, I start 36 treatments on Monday. My Mother died of breast cancer; one sister had breast cancer and the other died of ovarian cancer. I had breast cancer over 20 years ago and now have a different cancer in the other breast. I had chemo and radiation together then (chemo for 6 months), and I worked because I had to (single with children). My breast returned to almost normal after treatment, although smaller than the other - perhaps because the rest of me gained weight over the years.

    I'm a private person but have strong personal preferences. I had a number of unpleasant experiences then. This time, I'm speaking up for myself. For one, I said no tattoos. During mapping, I felt pain and found out the tech was tattooing me. I got off of the table. I was shown photographs of people with tattoos in an effort to convince me, but I refused. I later had my dermatologist remove the 2 marks, and the hospital paid the bill. During treatment, I learned I had been photographed when I was unconscious; I saw the Polariods in my file, reclaimed them, and destroyed them.

    I am modest and am usually quiet, but I am adamant about speaking up for myself this time. All of my doctors are women, except the radiation oncologist - couldn't find a woman. On the day of my recent mapping, my name was called by a young man who said he was a student intern and would be with me for my procedure. In a non-confrontational manner, I asked whether I had a choice; I did, and I told the techs I wanted him to leave - nothing personal; they said he was used to it. The techs, a man and woman, were middle-aged and kind. Crying, I told them about some of my many unpleasant experiences during my previous cancer experience. I said didn't want to be tattooed, and they were fine and comforting. When the tech told me she was going to photograph my face (with a digital camera) I asked if I had a choice; we discussed it and I said no photographs. Then she told me that she was going to photograph my breast after marking; I asked if I had a choice; we discussed it and I said no photographs. By the time I lay down on the table, I was shaking but glad I had spoken up. After the session, the woman tech asked how it had gone for me; I told her that I prefer women staff; I found out I have a choice.

    The day of the simulation, a week later, I started to shake as soon as my name was called. I explained that I didn't want to be tattooed and that I wanted to see only women, and they already knew. But I have been crying a lot. I don't know whether it's anxiety, adrenalin, or simply exhaustion.

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  • DiamondGirl
    DiamondGirl Member Posts: 1,046
    edited September 2010

    DMS - thank you for your support, I appreciate it.

    Alca - I want to welcome you to this thread.  They took pictures of me too and I was not given much notice ahead of time, although I knew about the tatoos which is three pin hole dots on me.  I was given conflicting information regarding more marks being drawn on me, meaning Sharpie pen marks that looked like a computer graphic map.  My techs were women but they are the coldest people I've met during this BC ordeal.  The guy tech that did my CT was more informative.

    I was talking with Lorraine who's starting rads this coming Thursday, she said that her rad onc popped in to double check the techs' measurements, which to me is very reassuring.  My rad onc was nowhere during my CT or simuilation and I would like to ask if you ladies can give me your experience during the simulation.  I believe some of us have a lot more drawings than needed and my thinking was perhaps my tech was a greenhorn.  During my simulation, the gals opened and shut the big thick door like a dozen times.  While I had to turn my face facing the right, I can see a green line, and there was a tape with 2 lines like a large + sign.  I even asked the tech, is this green line supposed to line up with the lines on this tape? And she said "No".  

    I hope to exchange notes with you ladies so that I'll know what's not being done properly since my techs don't talk.  

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  • JanetfromPgh
    JanetfromPgh Member Posts: 35
    edited September 2010

    Hi everyone..well my life is in turmoil even more..my nipple is now inverted.  What the heck is that about?  It comes out if I pull it out.  My sister has terminal cancer and contracted c-dif at the hospital a few weeks back.  She is still in the hospital so we have to take care of her kids and help clean for her.

    As for the comment, I did a little investigating and it is not someone on this thread.  She also sent me another message today and told me I was a big baby!  LOL  I won't say who it is but apparently my comment about being embarrassed about not being allowed to shave under my arm during radiation got her in a tizzy since I should be "grateful that I have hair to shave."  I meant no disrespect but I never connected that chemo makes you lose the hair under your arms.  Today, she said that I was telling people that it was okay to take soy and that soy is what got most women having cancer.  

    Going Tuesday for the pancreas surgeon so we'll see.  Supposed to start radiation on Thursday.

     Thanks for your support girls!  I appreciate it as I'm ready for the bridge. 

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  • rcca
    rcca Member Posts: 59
    edited September 2010

    Janet,

    When I was about 12 I remember shaving my mom's underarms after her mastectomy. She was told not to shave and could barely raise her arm, but she couldn't take the hair. Your post reminded me of how much she trusted me. Having watched her journey with breast cancer and how much strength she had helps me. Anyway, your post made me smile, so thanks.

     rcca

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

    Hi! JanetfromPgh,

    It was just one individual sending negative private messages?   Go public with name if anymore bullying.   Good luck with doctor.

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  • dutchgirl6
    dutchgirl6 Member Posts: 673
    edited September 2010

    Welcome AlCa.  I'm glad that you joined the group, and I am sorry that you are having to deal with this again.  You are a strong woman to make sure that you are heard by those who are treating you, and getting what you want.  I am impressed!  I'm sure that we all understand your tears, this is an emotional time.  Feel free to vent, we will listen.  This is such a good site, I'm sure that you will find support all over, there are so many different topics.  Good luck tomorrow, I will be thinking of you as you go for your first treatment.

    Hi Janet, I'm glad that you decided to rejoin us.  We were concerned.  What's with that nipple?  I hope that it corrects itself soon.  I'm sorry to hear about your sister. I hope that she is feeling well enough to be with her family.  The whole hair thing is such an emotional experience.  When you have chemo, you lose your hair everywhere, not just on your head.  I personally felt that not having to shave all summer was one of the positive SEs, but for some people it is a difficult thing.  I know that there are some sisters on these boards who are still struggling with hair growth long after they are finished with chemo.  I guess that you just hit a nerve. 

    Have a good Monday everyone.
    Karin

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  • 1marmalade1
    1marmalade1 Member Posts: 308
    edited September 2010

    Hey, Janet, glad you decided to stick with us. 

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  • KaeB
    KaeB Member Posts: 6
    edited September 2010

    Hi all, haven't been on line for a while. Great group of women to be able to communicate with. Several have mentioned the rad techs. Most of them at my center are young males but they have all been professional and polite so I don't feel uncomfortable with them. I'm sure they see all sorts of things but they are always pleasant. Only one nurse so far in the chemo room has been a downer. (You know you can always pick them out!) Have had 12 tx so far out of 38. Have had a little redness but not bad yet. Spent the weekend with my sisters so feel all pumped up and ready to take on more. Stay strong and we'll all make it through this together.

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

    Hi!

    Today my radiation oncologist gave me Aquaphor to use on sore breast.   Start of another week.

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  • Fearless_One
    Fearless_One Member Posts: 3,300
    edited September 2010

    I can honestly say I sailed through rads (33 of them).   I used fragrance free, alcohol free, clear aloe vera gel (Fruit of the Earth) after treatment and at night.  

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  • sespebadger
    sespebadger Member Posts: 249
    edited September 2010

    Thanks for the encouragement, Fearless_One. Today is number 20 of 33 for me. I'm sad that I am getting brown spots as well as pinkness......that's vanity for you. Also, one of my teeny blue tatoos is right in the upper center of my chest and shows above most tops. I guess I'll just have to buy myself more pendants.  

    I have hardly been drinking since diagnosis, but I told my DH today that I may stock some red wine to take the edge off during these last three weeks. Bubbalu said it was healthy!!

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  • DMS
    DMS Member Posts: 51
    edited September 2010

     AlCa, sorry you need to go thru this again and you should feel so proud of yourself for standing up to the doctors and techs and making sure your needs are met.  

    Janet - Glad you came back and so sorry someone made you feel bad.  That's the last thing any of us need.  

    Thirteen treatments completed.  I had a new rad tech this morning, a young man who will be working the morning shift this week.  It must have been his winning smile or perhaps I've gotten desensitized after 13 treatments but I took off my gown and it didn't phase me (or perhaps it was still 7:45 am and the coffee hadn't kicked in yet).  I also met with the radiologist this morning and found out that I will need 24 full breast rad sessions and 7 boosts for a total of 31.  

    So glad we have this support group. 

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  • bubbalu
    bubbalu Member Posts: 177
    edited September 2010
    Sespebadger:  Did you read the Anti-Cancer book?  Dr David Servan-Schreiber, MD, PHD says in his book drinks should be  red wine (reservatrol) in moderation, 1 glass per day filtered or bottled water, lemon flavored water, all green tea, gingeroot infusion.  BUT check with you onc. I'm sure it's the anti-oxidants that help.  If they don't want you to have too many during rads they will tell you when you ask.  Be safe!
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  • bubbalu
    bubbalu Member Posts: 177
    edited September 2010
    Sespebadger:  Did you read the Anti-Cancer book?  Dr David Servan-Schreiber, MD, PHD says in his book drinks should be  red wine (reservatrol) in moderation, 1 glass per day filtered or bottled water, lemon flavored water, all green tea, gingeroot infusion.  BUT check with you onc. I'm sure it's the anti-oxidants that help.  If they don't want you to have too many during rads they will tell you when you ask.  Be safe!
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  • bubbalu
    bubbalu Member Posts: 177
    edited September 2010

    JanetfromPgh:  Glad you're back!  Too bad you can't block people like that from PMs like we can the cell phones.  Anyway, just ignore anymore messages from them, delete!

    Sorry about all the problems you and your family are having.  Actually my hair is very slow coming in.  I finished chemo 6/3 and I only have white fuzz now.  The dermatologist told me I could take biotin and with my luck I'll get a nest of hair on my chinny chin chin.

    I got an apt. at Abramson Cancer Center in Phila next Tues to see if the radiation onc knows what the heck is causing my 'out of area' burns.  My rads here want to stop tx as it may cause me serious burns and infection if I can't do 8 I can't do 33.  What am I to do?  I'm TN!! So here I go to get the answers I'm hoping for - WE can help.  If not, I'll just have to deal.

    Teka:  I've had real good success with Aquaphor.  It's messy but it's worth it.

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  • bubbalu
    bubbalu Member Posts: 177
    edited September 2010
    bubbalu wrote:

    This is rather 'out of our realm' now, but here's what I may be facing if I can't complete the rads. 

    You all know my story here by now, here's my next question?  Have any of YOU or have any of you heard/read of anyone doing cliinical trials.  If I'm faced with seeking alternatives.  I found the PARP clinical trial and I think I am a candidate for it.  This is a first event and I pray last for me. 

    I guess what I'm asking here is, did any of you or anyone you know participated in a clinical trial.  I'm reading that the PARP for TNs is showing great promise and they are considering opening it up nationwide. 

    Also, what are the side effects?  how bad?  If the cisplatin would work for me I wouldn't have to worry about the radiation being completed.  I have now a 30% chance of reoccurence to the breast area and the rads would lower that to 10%.

    Can anyone give opinions/advise here? That's one of my questions for Abramson in Phila. but I thought I would as the 'real' experts first. I realize we're all just trying to put one foot in front of the other but I just thought I would throw it out there...........................HAHAHA

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  • SharonNM
    SharonNM Member Posts: 39
    edited September 2010

    Bubbalu - I was scheduled to participate in a clinical trial (Tailor? or Taylor?) but ended up having chemo before surgery so didn't end up participating.  The whole purpose of the clinical trial was to get an oncotype score after surgery and be assigned to a chemo group.  I have always heard that you get excellent care when participating in a clinical trial  I have no idea what PARP is - but I hope it works out for you. 

    Deborrob - your symptoms sound exactly like mine about 2-3 weeks after my last chemo - I was exhausted, had shortness of breath just walking to the kitchen and was very weepy because I just wasn't sure I was ever going to feel any better.  Hope you are feeling better soon.

    Alca - do whatever makes things right for you!  This is your body and your life.

    Also - did I read everybody correctly - we aren't supposed to shave our pits during radiation?

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