January 2010 Rads Start

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited December 2009

    ha ha! good answer

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  • Kim09
    Kim09 Member Posts: 100
    edited December 2009

    Had my dry run today they also were doing films today so it took longer than the real thing.  They ended up redoing the tatoos.  Now I have 4.  The real thing starts on Monday.  I have a feeling a will be very tired by the end of the day Monday because that is also the first day back to work for me.  I have been off since the Monday before Thanksgiving.

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  • catwrangler
    catwrangler Member Posts: 23
    edited December 2009
    Debbie,  the cream is called Xclair and it's made in Europe. According to the nurse, they have had a lot of positive comments about it from patients, but it's expensive.  Aloe and Eucerin/Aquaphor are the less expensive options.
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  • Sido
    Sido Member Posts: 234
    edited December 2009

    Hi All,

    The dry run today went without a hitch.  They put me back in my packing material and took films.  They also did my tattoos, one between my breasts and one on each side near my ribs.  I start treatments on Tuesday when we get back from Chicago (a second try after our trip got snowed out last weekend).

    Have a wonderful New Year!

    Sido

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  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited December 2009

    Dear Kim, Sido,

    Good to hear your dry runs went without hitch and you are all set for starting rads early next week.

    Dear CatWrangler,

    Thanks for the information on the cream.

    Dear CookieGal,

    You liked that answer, huh!

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited December 2009

    hey all. my ps said lots of people come from SMK using the french cream and she is not so impressed with it, but to each his own.

    I don't mind greasy since I have such dry skin, infact I have been using the aquaphor everywhere.

    What I can't get is a good answer on the Calendula, my rad onc said stick with aquaphor, but I have been using a little bit of the calendula before bed. It can't interfere with the treatment can it?

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  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited December 2009

    Dear CookieGal,

    You are the first one to get started, we are looking to you for answers not questions!

    In general, the best person to answer whether some cream, oil, lotion, powder etc helps or hinders with the treatment would be the radiation oncologists but we know what they would say!

    MSK is usually anti-supplement or natural therapies but they seem to accept that calendula has properties that help prevent radiation induced acute dermatitis. See this article on their website.

    http://www.mskcc.org/mskcc/html/69159.cfm

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited December 2009

    oooh...UWO..good job!

    Yeah when I mentioned the calendula my rad onc kinda wrinkled up her nose, but did not forbid it.

    3 down, 27 to go.

    Happy rocking radiation New Year's Eve!

    (oh by the way you can go in a swimming pool, if you do not have severe irritation, just rinse of the chlorine really well !)

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited December 2009

    oh and here's one more odd thing, the tech is worried I am going to lose one of my tattoos!

    Who knew they could be lost!

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  • jenn3
    jenn3 Member Posts: 3,316
    edited December 2009

    I'm just checking in to say hello, still haven't met with the radiation onc yet, but I'm told I should see him and start radiation by the middle of January.  I'm thinking it'll end up being more towards the end of January, but I could be wrong.  In all honesty I don't know much about radiation. I know the basics, the mapping, tattoos, stay away from lotions, deodorants, additional vitamin supplements, wear soft cotton clothing, and have heard that Aquafor is really good.  I know that it can cause fatique and to ask about keeping it away from my heart and lungs, but other than that I really don't know what else I should ask.  Is there anything else I should know for my first visit with the rad onc?

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  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited December 2009

    Dear Cookie,

    You are very welcome. Thanks for the note about swimming. I am dying to swim in the NJ winter :-)

    Dear Jenn,

    You should also find out whether they will radiate your clavicle and/or axilla too. With 4 nodes, they probably would. 

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  • Twinmom77
    Twinmom77 Member Posts: 303
    edited December 2009

    Hello all,

    I'm a January start, but I don't have a date yet.  I went today for the consult and the CT scan and tattoos, and I know I'll have 35 but I don't know how many of those are whole breast and how many are boosts.  No axilla, no clavicle, supine.  I asked about the Canadian fraction and the doc said the side effects would be worse since the doses are so much higher.  Anyone else hear that from their doc?

    I'm not happy about this at all, so I'm hoping to hear some good things from the early starters.  They kept telling me I'll most likely be really tired and saying that I'll need to rest a lot and get a good night's sleep.  I felt like saying, "Ok, are you going to watch my three year old boys and clean my house for me and get my groceries while I rest?  And tell me how exactly I get a good night's sleep when I have a kid or two crawl into my bed every night?"   Not to mention I don't even have a babysitter to watch my kids every day for the next seven weeks while I get treatment!  AGGGGHHHH! I'm so overwhelmed with this.  I feel fine except when I have to have treatment, then I get anxious and depressed. I want this cancer crap to be over so bad!

    Ok, deep breath, sorry.  Can I please stay even though I just vented all over the place?

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  • mom2acat
    mom2acat Member Posts: 556
    edited December 2009

    A little past history first; diagnosed stage II in 2003; had chemo, then radiation to the chest wall in 2004. Bone mets discovered in 2007, had rads to the pelvic bones and hips. Finished 14 low dose radiation treatments to mets in the left hip joint on Dec. 2nd.

     I had my appointment with the radiation oncologist today. On the 11th, I had MRIs done of the cervical and thoracic spine; on the 23rd, I had an MRI of the lumbar spine. I started out with just a couple of small mets on my spine when my bone mets were first discovered in 2007; now I have several. None in the cervical spine, but I have them through a lot of my thoracic and most of my lumbar spine. Still can't be sure if it's related to my hip pain or not.

    Anyway, my radiation oncologist wants to treat those areas with low dose radiation. It should relieve some of the pain, but more importantly, keep the cancer from spreading through more of the spine. If I don't get it done now, sooner or later I'd have to have it done anyway, because of the pain.

    They took some Xrays this afternoon to start the planning, and I didn't need any new tattoos because they could use the ones that I already had from before to line up the machine. (They are not large, just little dots, about the size of a ball point pen dot.) Next step is a CT scan; not to look for anything, but so they can plan what areas to radiate. I will be having that done on Jan. 6th. After my doctor gets those results, they can finish planning my treatment, then they will call me and let me know when I will start the radiation, and how many treatments.

    I'll most likely have some side effects this time, which will be unavoidable; probably diarrhea, some nausea, and possibly some problems with my acid reflux, depending on how high up the spine the radiation will be.

    I knew I was going to be needing some type of treatment on my spine, so the news today didn't really surprise me. I will probably have a rough time for a little while, but hopefully it will pay off with finally having this pain under better control.

    Some good news; the IBS has finally eased up from the last radiation I had, which was on my hip, that I finished up on the 2nd of this month. I am going to spend my New Years Eve watching at least one of the two Pirates of the Caribbean movies I got for Christmas, and I am going to treat myself to some pizza. It's been a long time since I've been able to eat pizza, because of not feeling good from the last radiation treatments, and once I start them again, it will be long time before I can eat it again. Not going to go crazy with the toppings though, just going to stick to plain old cheese.

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  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited December 2009

    Welcome TwinMom and Mom2aCat.

    TwinMom,

    I will be getting Canadian. The evidence from the 12 year old Canadian large study indicates very very marginal difference in side effects, like 1%, which is not something I'm worried of.

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  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited December 2009

    Dear Gogo,

    What position - face up or face down - is your mom getting radiated in?

    Dear CatWrangler,

    Same question for you.

    Dear NannaJean,

    We don't know much about your rads except they must have started  on Tuesday and you were going to have 16 base rads. Please share your info.

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited January 2010

    ARRRRG....pain in radiated breast just kicked in. Sharp twinges like post surgery. Talk about timing.

    Calm down baby.

    Just took traquilizer, for some reason they help more than the pain meds.

    New gold polka dot dress with tight top is not looking so appealing right now...but it's really sort of a NYE dress.

    Happy new year!!!

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  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited January 2010

    Aaargh sorry to hear that Cookie. Take whatever you need to take. No need to suffer.



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  • one-L
    one-L Member Posts: 1,110
    edited January 2010

    Good evening ladies and welcome to all the newbies.   I have been trying to stay up with reading the posts, but not posting much, too many things going on.

    I went to Med Onc today and next week all I have to do is have a blood test, then I will not see her for another month.  That will seem so strange.  Still scheduled for my Rad Onc consult next Friday, I am really ready to get this started.  It  would have been nice if I could have gone this week.

    Happy New Year to everyone and I hope  everyone enjoys their long weekend.

    Juannelle

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited January 2010

    drugs worked...made it to party..dress was a hit..though my husband had to squeeze my swollen boob in there...toasty and me are headed to bed!

    Happy New Year!

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  • mommy2two
    mommy2two Member Posts: 130
    edited January 2010

    Hi all...just checking in to say and Happy New Year.  I had my last chemo tx yesterday and my onc nurse will be setting up my appointment with the rad onc for next week.  Since I've already had my initial consult, I figure I will start rads in the next couple of weeks although there is no rush on my part Laughing

    During my infusion yesterday, I call my surgeon to make an appointment to get my port out.  I was then told by the chemo nurse to leave it in during radiation because I would need to come back and get hydration 2-3 times a week.  She said it would help me feel much better while going through rads....I've searched to see if anyone else does this and haven't seen anything.  Is anyone on this thread going to do that or even heard of it?

    Hope everyone has a great long weekend!

    Toyah

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited January 2010

    Good morning....happy NY!!!!!!!

    Redness is really good this morning, so that has calmed down. (for what it's worth my scars turn BRIGHT RED) after treatment.

    Swelling is significant, not uncomfortable, but pretty big.

    Here is my fear, the symptoms of cellulitis,(which I had two weeks ago) and the rad se's are the same, swelling, redness, white touch.

    So how do I know for sure it is not cellulitis?

    Oh well, look for horses not zebras I guess.

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  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited January 2010

    Dear Toyah

    Interesting to hear about hydration. I was wondering when to get my port removed too. My last chemo is on monday. I'll ask the doctor and let u know what she says.

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  • kmf
    kmf Member Posts: 79
    edited January 2010

    Just checking in.  Happy New Yr. everyone.  I had my 3 treatments and the only difference I've noticed is less gas in the car for the trip there and back, and it's really not that far away. As far as my breast is concerned,  I've noticed nothing, nada, zilch.  I is just like getting an ex-ray at the dentist -- don't feel a thing during or after. A friend who does physical therapy reminded me to do snow angels to keep the tissue from tightening up. So, I'm doing those and I'm back on the treadmill which feels good.  I've spent most of my life exercising, fell off the wagon earlier this yr, and stopped,  and now I'm back at it and as it always does, it feels good to be getting back in shape.  Good luck to all.  Karenanne

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  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited January 2010

    Happy New Year to everyone!

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  • one-L
    one-L Member Posts: 1,110
    edited January 2010

    My Med Onc said to leave the port in until after radiation was finished, then I can have it taken out.  I was initially told, that it would need to stay in for 2 years.  Glad she changed her mind.  So I expect I will have it removed in March.  wooohooo

    Hope everyone's new year has started out with a bang and is only going to get better.

    Juannelle

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  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited January 2010

    Hi One-L,

    Did she give any reason for keeping the port till after the rads?

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  • catwrangler
    catwrangler Member Posts: 23
    edited January 2010

    Onty, I'm face up for rads on my left side. They did an adjustment two days in to the process as my rads dr wasn't happy with the fields around my heart. That was a little scary to

    hear, but early adjustments are better than later ones right? So I'm 4 down now, 31 to go, and things are ok for now

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  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited January 2010

    CatWrangler, thanks for the update. My rad onc told me that with breast they have lot of options and lot of time to adjust the positioning of the rays and the breast. I'm sure the rads doctor was just further optimizing for your best health.

    I just realized that Cookie and me are the only ones getting rads in the prone position. I know Sloan pioneered this position 12 years back and are a big champion of it but I thought more and more doctors are using the prone position especially for the left breast. Looking at this thread it does not look like anyone else other than Sloan is doing us in "doggie" style :-)

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited January 2010

    lol!!!!!!!!!!!!!

    Bow wow wow!!!!!

    Best laugh I have had in weeks!!!!!

    (although deb did it "DS" at Beth Is.)

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  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited January 2010

    Woof woof :-)

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