APRIL Rads Anyone?

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  • susan13
    susan13 Member Posts: 732
    edited June 2009

    Caroline-My hands both go numb at night also.  I told my onc. about it last week and he said it's probably neourapthy(sp?) lingering s/e's from chemo.

    By the way your hair is looking awesome!

    Congrats Sue !!!!!!

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  • Lainey64
    Lainey64 Member Posts: 740
    edited June 2009

    Patoo, I had my axillary node dissection last November and my arm is still numb.  I've been seeing a lymphedema therapist and she told me that the pains we feel are the nerves regenerating themselves and that it's completely normal.  Luckily I don't have LE but she taught me some massage techniques to use when my arm starts to hurt. 

    I saw my rads onc this morning for my 1 mth follow up.  He said my skins looks great.  It was a good and emotional visit. 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2009

    Lainey64 - thanks for that info.  I also massage often just in case.  The thought of LE scares me.

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  • EleanorJ
    EleanorJ Member Posts: 752
    edited June 2009

    Thanks Sue :) I didn't get neuropathy during chemo, the numb hand started during rads, couldn't remember exactly when, but I want to say 2-3 weeks into rads if not later. And it ONLY happens during my sleep, it wakes me up, I start moving my fingers and within a minute it goes away & back to sleep. It's the weirdest thing, but I do have to say the first night it woke me up I was pretty freaked out. I go back to the med. onc in July so I'll ask him if it's still happening.

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  • bethaib
    bethaib Member Posts: 125
    edited June 2009

    Hi all....life has been pretty busy lately...where does the time go? lol   When you have teenagers there is always something going on....trying to figure how we are getting one of them to her finals right now...

    19th...that could work for me, but I don't recall reading anything about a time frame?

    Still feeling a bit tired, but other than that am pretty good. No SE to speak of really anymore. For those of you still dealing with things, hope they just STOP! lol  All kidding aside, hope the docs find out what is going on so you can feel better....

    Going to go wind down a bit and read for a little while till it is time for dinner.....

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2009

    9 PM on east coast would be 6 PM on west coast and 7, 8 in between.  Is 9 PM on east too late; maybe keeping people awake, not from the ice cream but all the stuff we'll be putting on top (chocolate, caramel, nuts, whip cream, fruit, etc.)?  Didn't hear from anyone overseas so I guess won't have to worry about anyone in Europe having to get up at 3 AM to join us!

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  • eadsla
    eadsla Member Posts: 217
    edited June 2009

    Patoo--June 19, 6pm pst.  Works for me!

    Caroline, when I think about your hand numbness, I hear my onc saying "blame it on chemo."  I would guess that this is some residual effect from chemo that sort of got exacerbated by your system being weakened by rads.  Also, the fact that it seems to be tapering off on it's own is a good thing and seems like it is something that will clear up on it's own....not unlike a lot of other se's from chemo.  At least I hope so...because, let's face it...that's a weird se.  I would have freaked out too that first night.

    And what is it with the rad oncs who seem to think that NOTHING is caused by rads?

    Here's to having a great weekend.  For the lucky few who see the sun this weekend, can you tell me what it's like.  Living in Southern California this month has meant that the sunshine is a distant memory.  So far, over three weeks and no sign of sun.

    Catherine

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  • Debbi5108
    Debbi5108 Member Posts: 182
    edited June 2009

    I agree about them just turning you loose Lainey, if you need meds , you are to go to the primary care doc, but they want their money every 3 months.  so you go in there they say hows it going ?you say fine, they say ok, bill your insurance 300.00 bucks and nothing, its a bunch of crap IMO so I told the chemo docs office they other day when they called, " I will see you in Sept as I am still seeing rads doc so he can watch my skin and I don't think I need to see both do you ?" ( as it does tricks NOT!!!).  actually I think he just wants more money, however he's nice and it sounds somewhat legit.. The aches and pains just need to go away and can be so worrisome, my radiation doctor said something that was nice concerning just that, I had been telling my DH that he didn't understand how scary it could be now when I felt a new something pain or otherwise and he had said (not in a mean way) babe don't worry it will all get back to normal before you know it and I said thats just it I don't think I will ever know NORMAL again and he said I was overreacting well anyways to make a long story short later that day when I saw the doc he told my husband and myself that I would never have the feeling of normal or the privelege of not worrying about a new pain or ache that cancer doesn't just affect the body but, every aspect of a persons life. I then looked at my Dear sweet husband and smiled that smile of I TOLD YOU SO!!!!!  I guess the moral or point to my story if there is one, is that if you have ache and pains is that we are not paranoid or looking for something to complain about we are just being vigilant as our time of taking things in life for granted are over.

    Hugs to all,

    Deb

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  • Jane_M
    Jane_M Member Posts: 1,549
    edited June 2009

    Deb - Your husband sounds just like mine, and I am so frustrated.  I feel like he doesn't understand me and he doesn't hear me.  We've been married 26 years and we used to be best friends and now I feel like I'm going through this all alone.  I feel more comfortable and understood by you guys than I do with him.

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  • Lainey64
    Lainey64 Member Posts: 740
    edited June 2009

    Happy Monday gals. :)  I have been woken up during the night and my right hand has been numb.  It's weird and I never really thought about it until after reading some of your posts.  I just thought I slept on it wrong.  I never attributed it to neuropathy.

    Ok, I started to have a panic attack this morning and I need some help.  Yesterday I noticed under my arm (on rads side) that I have a small pink spot. There aren't any bumps and it doesnt hurt or itch, it's just pink - proabably the size of a quarter or a bit smaller.  It's been really hot here and my boyfriend thinks it's just a heat rash.  I never noticed it before and when I saw my rads doc on Friday and he didn't say anything.  I read some of your posts and it seems that some of you had this same thing.  It's soooo hard not to freak out about everything so please, if anyone has anything similar, please talk me down from this!  :)

    Lots of love,

    Elaine

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  • EleanorJ
    EleanorJ Member Posts: 752
    edited June 2009

    I know right, chemo does all kinds of weird things to your body and rads does NOTHING!!! LOL! I wonder what the rad onc blames the SEs on if you didn't do chemo first?

    Elaine, I'm not sure what to say, it's probably just a rash. Wait a few days, maybe a week, if it's still there then get it checked, but at least give it a chance to go away by itself. I know I've been doing self-exam ALL the time and I keep telling myself that all the bump are from the scars, I'm sure it is, but it feels like I have a bunch of lumps around my scar, probably scar tissue, but I'm not going to stress about it until I go back which is in a month. I decided to consider myself cured and not in remission. Remission implies that it dormant until it wakes up and come back. I'm not dealing with this again, therefore I'm CURED :)

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  • Debbi5108
    Debbi5108 Member Posts: 182
    edited June 2009

    Okay Ms. Lainey,

         I know how you are feeling however let me reassure you that the spot probably hasn't been there but, that being said is still probably nothing and could be the results of a late rad SE as my rads team said this was something that could happen for a couple of months after rads and to not get alarmed (YEAH RIGHT!!!!) we know we are going to get ALARMED over the sniffles now  LOL okay maybe not the sniffles but if I got a nose bleed Oh! Lord I'd probably think I had brain cancer. Hope I'm talking you down!!!!?????  None of us will ever be cavalier about our Health, spots, bumps, lumps and rashes to name a few, ever again however that being said, we will learn to be less paranoid and more vigilant and aware, or at least it sounds really mature, sophisticated and like a line of really good BS, what do you think???? Lainey I so hope your better but, could be a burn that finally surfaced and no this part isn't BS, they really did tell me it could happen so I say slap some aloe or burn ointment on it ,watch it for a couple then if no change call, or go see the doctor. I will keep you in my prayers and thats no BS either just wanted to lighten the mood  around here. 

    Hugs and definitely laughs,

    Debbi

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  • susan13
    susan13 Member Posts: 732
    edited June 2009

    Hi Ladies,

    Ok I am having MAJOR issues with my right hand and arm (rads side).  The numbess and tingling is getting worse at night and now pain has joined in.  Someone had mentiond carpel tunnel... but that would be a major coincidence seeing that it started just as I was ending rads... ugg... I see my rad onc. Friday for my 4 week follow-up, and I am so sure he'll say "oh it's not from rads".

    Elaine-I had a weird spot last week on my rad boob.  It wasn't pink but a different shade then everything else around it and in a complete circle. I totally freaked out! But it has gotten better. This morning I noticed I have several different shades over the entire area. So I am sure your's is nothing, but I would at the same time agree with Debbi with if it doesn't get better to call your doc. If rad onc. brushes it off call your med onc.

    Have a good day ladies!

    Sue

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  • Debbi5108
    Debbi5108 Member Posts: 182
    edited June 2009

    Sue, Wow I am having problems as far as when I lift it I am still trying to stretch those things out, but, the numbness and pain happens when I lay to long, I would definitely check into not because I think it something bad but, sounds neurologic to me.

    Hugs,

    Debbi

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  • bethaib
    bethaib Member Posts: 125
    edited June 2009

    Sounds like quite a few of you are still dealing with some SE, sorry to hear that. just when we thought we were done, right?

    I know it is hard to "wait and see", (re : weird spots), but I suspect it is something else creeping up from treatment. I agree, I would watch it a few days or so and if it doesn't go away or improve, then consult the doc.My hands have almost returned to normal after my sun exposure and reaction with my antibiotic, though it took about 5 days before it was almost gone. One step at a time....

    Having dealt with back pain for a year now, I no longer think in terms of things going away quickly. I actually expect to have some symptoms over the next couple months related to the surgery/rads. If it doesn't happen that's great, but I pretty much am resigned to have something. Hell I have 5 yrs of hot flashes to deal with now...man! lol

    Have a good night ladies...

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2009

    Everyone getting prepared for our ICE CREAM SOCIAL 'finished rads' celebration Friday evening - 6pm Pacific, 7pm Mountain, 8pm Central (or is that backwards) and 9pm here in the east.  I'm not having any dessert this week - saving it all up to pig-out on Friday.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2009

    We just got an ice cream maker! Maybe I will celebrate with homemade ice cream.

    I went to the neurologist last week, and he diagnosed carpal tunnel syndrome for the numbness in my hand. For the dizziness, I have been referred to an ENT doc, who I will see tomorrow. I have been dizzy for 6 weeks now, so I am really praying for a simple cause.

    Today I had a CT scan to check on the spot on my left lung which showed up last month. Tom was out in the waiting room praying, and I was in the scanner praying that it is gone. The report will be in on Friday.

    Tom has been working nights and sleeping days. The extra money from his new job will be nice, but the schedule takes some getting used to.

    Friday at 9 PM. All right!

    Bette 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2009

    Bette, will be praying for good news on the CT results. 

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  • susan13
    susan13 Member Posts: 732
    edited June 2009

    Bette-praying too for your good results.

    How did the neurologist dx your carpel tunnel?  I'm having the same issue and my med. onc. said he'll get me an EMG test, and I read up on it and it seems like it's very painful. And I think I have been thru enough.... for now.

    Ice cream tomorrow night definitely!

    I have been extra tired this week for some reason, but I am 4 weeks out of rads tomorrow... hmmmm...

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2009

    Susan13, I thought it was just me.  Been really tired in the afternoon every day this week.  I'm a month ouf ot rads today.   

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  • susan13
    susan13 Member Posts: 732
    edited June 2009

    Patto..... I thought I hit the "post fatique rads" thing already... but I guess not.   I guess we'll both be eatting our ice cream tomorrow night in our sleep:-)

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2009

    Susan13, the neurologist stuck me with pins up and down my arm and hand. He is going to do an EMG on July 1. What does that involve?

    The ENT did not find any simple cause for my dizziness. He ordered blood tests and I will go back in two weeks.

    I am buying the ingredients tomorrow for the ice cream! Tom and I will celebrate at 9 PM with ice cream from our new Ice cream maker.

    Bette 

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  • susan13
    susan13 Member Posts: 732
    edited June 2009

    Bette-When I googled an EMG I read that it was some sort of test also with many needles that got stuck into your arm, and it said it can be painful. They mentioned taking a sedative before you have it done.  Is it just conincidence that we can all of a sudden get carpel tunnel since just finished rads?????  I don't know......

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2009

    Everyone ready for ICE CREAM tonight?  Yummy!

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  • Lainey64
    Lainey64 Member Posts: 740
    edited June 2009

    Hi everyone.  I haven't been around too much lately.  I was starting to get the point that everything was starting to freak me out.  When I browse these boards too often that always starts to happen.  I still have the red patch in my armpit.  I'm not sure what it is.  I called the LE therapist and she has no idea.  For some reason, I think it's been there since my surgery, but due to chemo brain, I had just forgotten about it.  It doesnt hurt or itch and I'm thinking it's probably a result of my axillary dissection.   

    I'm totally down for some ice cream tonight!! 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2009

    When I mixed the ingredients for our ice cream maker, the recipe said chill for EIGHT hours. Bummer. So Tom has made an ice cream run so that we can celebrate in style!

    Today my oncologist called with the news that the lesion is still there in my lung, plus I have some enlarged lymph nodes in my chest. She wants a PET scan ASAP. This does not mean the cancer is definitely back, but she said it is a possibility. Tom has taken the night off to be with me, and we would appreciate your prayers.

    At 9 PM we will eat ice cream and celebrate the end of rads and one year since dx. I am not going to let this news steal my joy!

    Bette 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2009

    Ice cream party countdown. One hour to go on the East coast!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2009

    Yep, I'm watching the clock.  Get those scoops ready!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2009

    4 minutes - ready, set - GO!

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  • bethaib
    bethaib Member Posts: 125
    edited June 2009

    Hey all...hot fudge with whipped cream here in NY

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