Spring 2014 Rads

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  • faerywings
    faerywings Member Posts: 173
    edited April 2014

    Pam!! ROTF!!!!! 

  • AndreaJ50
    AndreaJ50 Member Posts: 889
    edited April 2014

    Flagirl- I also have 28 full and 5 boosts. Not sure what strength Rads they are. How do you find that out? Did your RO tell you?

    I am on my last full breast today! Yay! I am very pink, and a little tender all over but thankfully no sores or blisters.

    RO told me to use Udderly Smooth cream right from the start (Dollar Store). It was used for cow udders originally. I find it easier to apply than Aquafor (which I use on my nipple and crease under breast).

    I ruined my favorite bra with Aquafor, grrr.

    So glad to be nearly done!!! Although I shouldn't complain since I haven't suffered like many if you and my commute is short.

    Gentle hugs to all of you!!

  • inks
    inks Member Posts: 746
    edited April 2014

    I have had only 2 so far. During the first one the machine stopped and the techs had to come in and go in the closets behind the machine to fix it. I am getting IMRT and I counted the zaps - 79 holy moly. I can see the size of the fields in the reflection of the machine and some as tiny as my fingernail.

  • keepthefaith
    keepthefaith Member Posts: 2,156
    edited April 2014

    Pam, thanks for the chuckle! Good luck on your rads on Thursday and to whoever else is starting soon.

    I am going in for #13 today. 1/3 done. So far, no noticeable fatigue. Pink sometimes, but hasn't stayed.

    Hair is slowly starting to fill in on top....getting impatient with it. 2 months PFC.

    ((HUGS))  

  • Notbuyingit
    Notbuyingit Member Posts: 1,035
    edited April 2014

    keepthefaith i am 3 months out & definitely impatient with my hair tho the onion shampoo seems to be helping & I can allllmost flip the hair over my left ear with the blow dryer ha!! my daughter is getting married July 5th & i'm hoping to not still have man hair.

    7 treatments left w/2 boosts according to my calendar - Doc was a little too waffle-ly on my completion yesterday - i told him 6X5 =30 in my book & that's it for me!! anybody go beyond the 6 wks for any reason?

    i am small enough now to go without the bra - except, yes, for the one headlight but trying to cut down on as much skin irritation as i can - so it's cotton tanks under my work shirts & big soft button downs @ home - airing out whenever possible

    good luck to all - especially just beginning! there is a new lady in the spot after me - i intend to engage her in conversations such as these - most people I see go in & out of the center like ghosts - barely looking up - it's sad when we really should be supporting each other!!

  • Anneb1149
    Anneb1149 Member Posts: 960
    edited April 2014

    Hi Gram & Vintage

    You were both lucky- I waited a full six weeks from my initial visit and scan till my sim. And all I got was that they were "still working on it". I should be pretty much done, but it go for #5 out of 33 today. Was supposed to see Dr yesterday and wanted to get some explanation for delay, but they had some problems and were running behind, so hopefully I will see her today.

  • smrlvr
    smrlvr Member Posts: 422
    edited April 2014

    Pam, I am leaving for radiation in about 30 minutes and today I get mapping for my boosts, as well.  I don't know what they will use as a landmark for me as I have no breasts!

    What is onion shampoo?

  • StillRunningNLM
    StillRunningNLM Member Posts: 81
    edited April 2014

    I finished my rads on 4/3.  I have been experiencing a dull ache under my scar the last two days.  It is new.  I am not scheduled to see my RO for a follow up until 5/5.  I am wondering if I should call him or if I am just being a worry wort . . .  

  • BigDBeatingBigC
    BigDBeatingBigC Member Posts: 292
    edited April 2014

    Still:  I am having pain as well.  Upper back, my treated breast, shoulder, sometimes when I take a deep breath it hurts a little.  I do not think it is unusual, but my pain started just a few days before the end.  Not after.  It was bad last Friday, but I had been overdoing it.  I told the nurse this past Monday and she said if it does not ease I should come in and see the RO.  So I am giving it a little time.  The pain has eased but it is still there and the only reason for it can be the rads.  As long as you are not short of breath I would say give it a little time.  And if you are worried, go and see the RO.  Piece of mind is worth sitting and fretting I think.

  • StillRunningNLM
    StillRunningNLM Member Posts: 81
    edited April 2014

    Thank you Big D.  Sometimes it helps knowing you are not the only one.

  • VintageGal1111
    VintageGal1111 Member Posts: 705
    edited April 2014

    smlvr

     I had my simulation/markings done last week...I don't have boobs either. They have me going back Friday for a *dry run*. After almost an hour with my arms up, not moving I thought we did he dry run. LOL I guess they are concerned about me doing the breathing, holding my breath, while they zap so close o the ventricle. ?

  • Anneb1149
    Anneb1149 Member Posts: 960
    edited April 2014

    Well, I saw a doctor today- not my doctor, but a very nice older gentleman. Had no idea why it took so long (6 weeks) from initial visit to sim & start.  I also asked about the number of treatments and if any of them were boosts. He said "normal" is 28 rads and 5 boosts along the scar line, but he has no idea if that is what is happening with me. He didn't even know how many treatments I have had (5). He said I will see my RO on Mon. So why did I have to see him today?? Just wondering...

  • Notbuyingit
    Notbuyingit Member Posts: 1,035
    edited April 2014

    i told my doc i had some chest pain - he said the rads are hitting just above the the lung tissue about now & this is normal - scary to me tho. I think you should always call if something worries you - that's what they are there for - they have been through it a hundred times to your one. I am skeptical but I have to think they know their stuff :)

    the scheduler at my oncologist told me to chop onions - put them in your shampoo - let it set 15 days (i cheated & started using it after 7) and use it regularly. She said it makes your hair grow fast & shiny. I did googled it before i tried it and it is a legit remedy. 

  • BigDBeatingBigC
    BigDBeatingBigC Member Posts: 292
    edited April 2014

    That is interesting about the onions.  I will remember that.

    Anneb, I also saw two different "fill in" doctors right at the beginning of my treatments.  My RO was out for a week, so maybe your RO needed to be away for some reason?  Do not know why the doc would not know your tx plan. I would think it would be in your chart, but your tech(s) know I am sure so don't worry but ask your nurse or someone else there if you have questions.  They should be able to give you answers.

  • flagirl
    flagirl Member Posts: 144
    edited April 2014

    andreaj50 found out strength on my schedule they hand me every week. 

  • flagirl
    flagirl Member Posts: 144
    edited April 2014

    smrlvr how did your boost mapping go? Curious what is entailed. Used plastic wrap after I put creams on felt good, no oily mess on my clothes but when I took it off to bathe breast was bright red.not sure it was  good thing to do, so didn't put it back on after shower. Itchy, itchy only two more days and then a break.we can do it! Typing from cell

  • AndreaJ50
    AndreaJ50 Member Posts: 889
    edited April 2014

    Does anyone else get a schedule? I never got one. Never got any updates. Just saw my RO every week and he asks how I am doing and sometimes checks breast. I haven't had any issues really to discuss with him. He is very nice and takes all the time I need to answer any questions....even if they aren't in his specialty.

  • AndreaJ50
    AndreaJ50 Member Posts: 889
    edited April 2014

    I finished full Rads today and have five boosts left. I tried to count how many rotations the xray machine did....but I fell asleep around 38, lol.  I wish I could tape that lulling sound and play it back when I can't fall asleep at night!!

    I am going to miss going somewhere everyday, and having people to talk to. I know they are just doing their job, but it has been so nice seeing their friendly faces everyday.  I just moved here last fall from out of state, not long before my DX and I just have one friend that I have made so far. So I will be back to quiet days again soon. At least there are always friendly people here to chat with!!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2014

    That's interesting about the onions, Notbuyingit. I'd be curious to know if that works. I'm 11 weeks pfc and need to see some steady hair growth soon!

  • BigDBeatingBigC
    BigDBeatingBigC Member Posts: 292
    edited April 2014

    Congrats, Andrea!!  You are almost done!  Be sure and treat yourself to a special meal or movie or something fun to celebrate.  I am not sure what you mean about a schedule or update.  Do you mean at the beginning of your treatments?  That was the only schedule I received.  I also saw my RO once per week and his nurse once per week and they both checked my skin and asked how I was feeling and if I had any questions.  When you complete your treatment, they should have you come back for a follow-up in 4 to 6 weeks and then after that not sure.  I assume I am going to have several follow ups for a period of time.

    I know what you mean about missing the people.  I had a great time getting to know the staff where I am going and today I had an appt elsewhere at the hospital and stopped and got a big box of cookies from a bakery and took it over to them.  I think I will try to do that for my follow-up visits as well. 

    I hope you have not had too many SE's and that your boosts will go smoothly as well.

  • AndreaJ50
    AndreaJ50 Member Posts: 889
    edited April 2014

    what are boosts like? 

  • smrlvr
    smrlvr Member Posts: 422
    edited April 2014

    my boost planning was no big deal and took no time at all. After my treatment the RO came in and wrote a dotted line with a sharpie along my MX scar all the way under my arm out.  The techs then outlined it.  Then they put a glass plate in the boost machine and drew the area in that.  The machine they use for boosts is different and mine attach it to the regular machine.  It is supposed to keep the radiation closer to the skin, not as deep as the other radiation.  It is specifically meant for the scar tissue. It didn't take that long, but it am all marked up,with sharpie which they want me to try not to disturb.  That will be hard to,do,with the aquaphor and showers.

  • StillRunningNLM
    StillRunningNLM Member Posts: 81
    edited April 2014

    smrlvr - I had a magic marker outline for my 7 boosts too.  My boosts were spaced over two weeks because of the way my schedule fell.  The techs wanted me to avoid erasing it "on purpose" but did not mind if they had to redraw it.  They actually took a piece of plastic and traced the outline in case it did get erased.  They also suggested putting my cream inside and outside the line and just letting the soapy water run over the boost area.  It had faded by the first Friday, I asked if they wanted to darken it and they said they would take care of it on Monday.  It was gone, but the area was still very visibilbe because it was so much pinker then the rest.  

    Have a restful and peaceful weekend end!

  • Anneb1149
    Anneb1149 Member Posts: 960
    edited April 2014

    Hi BigD-I am sure my RO had a valid reason for not being there, and I heard them talking about problems with the chart records, so I am not really upset- just confused. If the Dr I saw yesterday had no access to my chart and I am going to see my own Dr Mon, why did I have to see him at all? He did tell me that one of the weeks I was waiting for their call, my Dr was on vacation. That really bothers me. I totally understand that everyone needs time off and I know I am not any more important than any other patient she has, if she waited for the "perfect" time to take vacation, based on patient need she would never go. So I have no problem with her being gone- I have a problem with the office not telling me that for two reasons : first, I thought my rads were pretty normal and more an insurance policy than anything else- each day and week that went by upped my stress level- what was wrong that it was taking 6x longer than expected? And if they had told me from the start it was going to be several weeks, I would have gone to visit the grandchildren that have been part of my daily life until my Dx. I was so desperate to see them that I went home for a week between the end of chemo and the surgery but I was so weak, all I could do was sit on the couch. I needed wheelchair assistance at the airports. I just wish the office had recognized that I am a reasonable person and they could have trusted me with the truth instead of vague "there still working on it" 

    And they gave me an Rx for a cream yesterday. The pharmacy called about 2hrs after I dropped it off- it is not covered by insurance- even with a letter from  Dr saying it is medically necessary. Out of pocket, it will cost $91, but I find it strange that the insurance is so adamant about it. Wonder why? And because I already gave it to the pharmacy, I don't know the name of it and can't research it on my own until at least tmrw...

    And so my life continues

  • Pam358
    Pam358 Member Posts: 294
    edited April 2014

    Notbuyingit - I have had 33 sessions scheduled....26 regular and 7 boosts...down to 6 boosts!

    Stillrunning - I am not finished yet but seem to have a few aches and pains inside my breast and underarm, but I always think it's worth calling to hear the "oh, that's normal" response.

    Andrea - I get a schedule on Friday for the following week.  However, 80% of the time I get schedule changes during the week. It's always around the same time but varies by 15-30 minutes.  Is there a Breast Cancer Support Group near you - that may be another way to meet people.  I've only gone once, but they were very friendly.

    My boost planning entailed the therapists setting up the machine according to the physicist's plan and then having the RO come in and make sure it all looked OK.  Then I got the black sharpie circle as well.  They told me to not put cream on the sharpie line and to try not to rub off the line....but they would also draw it on every day as needed.  As far as getting the boost - I was set up on the same table with my arms above my head in the form but the table was at a different angle and the machine came down at a different angle.  There  are additional parts added to the same machine they had been using and the machine comes closer to me than it did during my other treatments.  The best part was there was only one zap and then I was done. It all felt almost the same as the regular treatments just less and with sharpie marker.

  • BigDBeatingBigC
    BigDBeatingBigC Member Posts: 292
    edited April 2014

    Anneb, I totally understand your frustration.  My MO once said to me, "The spoken word is very powerful."  I had told him that I had "read" something into what the tech said to me when I was getting my bone scan and I was terrified that she herself had seen something on the scan.  And it took me two weeks before I went in to talk to my MO about it.  I was a nervous wreck and so upset, but it was all for nothing.  The scan was fine.  You are right, they should have just explained to you.  I just hope that your tx goes ahead smoothly and you do not have any more issues like that.  As for the cream, what did they prescribe for you?  From what I have read on the threads here, I cannot remember anyone saying they were prescribed something.  That is expensive.  And I do not understand why insurance would not pay for it.  I have had issues from time to time as well with other matters not being paid for.  Maybe you ask if there is something else you could have?  I used RadiaGel which I found on Amazon, although they stock it in the pharmacy at the hospital for the rads patients.  I also used Aquaphor and that is very affordable and I know CVS has it. 

    Pam, congrats on being almost done!!

  • AndreaJ50
    AndreaJ50 Member Posts: 889
    edited April 2014

    Pam- thanks. That is good advice. It would be a good place to meet people. In the fall my doctor wants me to participate in a group that is about life after cancer, or something like that.

    Luckily I will be going back home (2300 miles away) in two months. Then I will have all 7 kids and 9 grandchildren around me....can't wat!!!

    I think schedule might have been the wrong word. Some people know what type of radiation they are getting. I don't remember being told anything. But I don't mind not knowing.

  • flagirl
    flagirl Member Posts: 144
    edited April 2014

    Thanks for discussing the boost process. My tecs put clear stickers over marks to preserve. It works pretty well. I get them put on every Fri.  Aquafore works well you don't need expensive creams. The RO will issue prescription creams if necessary.

  • Pam358
    Pam358 Member Posts: 294
    edited April 2014

    Andrea - I didn't know until today what type of radiation I was getting and we discussed it only because I asked.  I was just curious...turns out it's just regular old radiation and nothing to fancy or high tech. Your trip "home" sounds like it will be wonderful!

    Silvadene is a prescription cream that RO's sometimes prescribe for patients. 

  • Anneb1149
    Anneb1149 Member Posts: 960
    edited April 2014

    good morning everyone

    The cream I was prescribed is MPM Radiaplex Rx Gel. I am going to call insurance now to see why they don't cover it. 

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