Winter RADS 2012 Club...Please come join the fun!

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  • fgm
    fgm Member Posts: 831
    edited February 2013

    There's nothing wrong with being a grandmother!!!!  I have one adorable 19 month old grandson.  Now I know, it's the reward we get for being a parent.  It's all the fun with none of the responsibilities!  Just you wait!

  • Shachar
    Shachar Member Posts: 229
    edited February 2013

    Haha, Cowpower! Yes, I am 38, look 28, and feel 98! What I miss the most is martial arts. I started back a couple months after bmx with my tissue expanders, then had to stop for exchange surgery and rads. Soooo looking forward to punching and kicking something besides cancer and fears. I also look forward to playing with my kids instead of just watching because I am too tired/sore. What do you all miss the most?

  • Loafer
    Loafer Member Posts: 121
    edited February 2013

    Finally starting rads tomorrow. I have had two simulations, bloodwork drawn twice, been photographed, interviewed, surveyed, and re-tattooed - all before this show gets started. I forgot to ask the critical questions - do I wear deodorant and lube up?



    All of this pre work to participate in the accelerated trial - 3 weeks and finished! Have weekly monthly, quarterly and yearly follow up for two years. They will be taking plenty of pics during this time for the study. Hope it becomes standard of care in next few years.

  • NYCMOM3
    NYCMOM3 Member Posts: 61
    edited February 2013

    Hi, ladies. Today was radiation #21 out of 27!

    I sure do look like a cooked bird. Today I had my first peeling incident. Got the silvadene. Hoping it will work. I know everyone said my skin would get super dark, but I was not prepared for it! 6 more left, I hope my skin can hold up!!! And my exhaustion - how long will it take to go away???  :(

  • stride
    stride Member Posts: 470
    edited February 2013

    NYCmom3, but RO said the fatigue usually takes 2-to-4 weeks to go away, but I imagine it is very individual, like the fatigue itself.

    Shachar, I miss hiking on the weekends, although I probably would not be doing much in the winter anyway. But we'll get back into our activities eventually! Something to look forward to.

  • schoolmom
    schoolmom Member Posts: 458
    edited February 2013

    Shachar....I am done with 6/33 and using the aloe force....so far no side effects.  Guess I am one of the newbies....wont finish up until March.

  • Waitingforthenextstep
    Waitingforthenextstep Member Posts: 251
    edited February 2013

    Hello to all,

                     I am going for my RT consult next week.  I have some questions you girls may know the answers;  the Cat Scan, is this a cat scan of the affected breast only?  

                      The tattoo;  what area gets tattooed?  Is the tattoo permanent?

                      Node radiation; I had a SNB done, 0/2 clean nodes.  Would I be getting radiated in the node area anyway?  Of course I know it is individual but I imagine many of our tx's are similar.

                      Thanks,  Blessed Day and no SE's.

  • JenniferW
    JenniferW Member Posts: 29
    edited February 2013

    TODAY IS MY LAST DAY!!!!  I am up early because I'm so excited!  It's better than Christmas!  I had my last regular visit with my RO yesterday.  She hugged me numerous times, gave me a wonderful medal to wear, and stocked me with skin care creams and lotions, etc.  I'm actually going to really miss seeing her on a weekly basis.  Oh, and she told me that they did in fact name my crazy boost position after me and she's already used it on another woman and referred to it using my name!  How freaking cool is that? 

    I had a bittersweet day yesterday.  A woman who has her rads appt right before mine (and thus we've become friends) found out that her cancer has spread.  I was devastated for her.  It's hard to finish up knowing she'll be struggling for quite a long time to come.  My heart aches for her. 

    Today after my last appt my family and friends are throwing me a party to celebrate!  I cannot wait!  Good luck to all who are starting.  May your side effects be few and your boost positions NORMAL!  hahahah! 

    Much Love

    Jenn

  • Shachar
    Shachar Member Posts: 229
    edited February 2013

    Nycmom, my tired has let up a lot just starting boosts. I mainly hit a wall on fridays when I was also the most sore.

    Schoolmom, I doubt I would have had the major peeling and raw areas with aloe force. Once I began using it, it seemed I healed faster than they could burn me! A bonus is that many of the ingredients are cancer fighters.

    Waiting, the tats are supposed to be permanent but they are small specks, smaller than a freckle. I had seven: four in a line across my recon breast, one abive and below the breast, and one on my opposite side below the armpit area. They were black, turned to bluish grey, then light gray. I can only find 3 now in areas that didnt peel and one is on the nonrads side. If I didnt know where to look I wouldnt see them. I had a full body (negative) PET scan before rads. I do not think they would do your armpit with negative nodes? That would be a blessing because, for me, that was the worst.

    Stride, hiking sounds nice! Yes, we will back to all of that soon.

  • jojo2373
    jojo2373 Member Posts: 662
    edited February 2013

    What is the aloe force?

  • stride
    stride Member Posts: 470
    edited February 2013

    Waiting, I think the Cat scan is your whole chest. They need images of your anatomy so they can figure out how to angle the radiation beams to avoid your heart and hit as little of your lung as possible.



    The tattoos are permanent, tiny dots, so small they can be hard to see. Little pin pricks. I have one on each of my sides to make sure I am lined up on the table, and I think four others all on the radiated side.



    Whether/which nodes really does seem to be highly individual, based on each person's pathology, the "behavior" of the cancer and maybe location of the original tumor? The radiation oncologist should be able to tell you what he/she thinks is the likelihood of local or regional recurrence in your case.

  • stride
    stride Member Posts: 470
    edited February 2013

    Congratulations, Jenn! You did it!



    Doesn't "aloe force" sound vaguely military? Here comes the Aloe Force to save the village from the evil radiation monsters!

  • allurbaddayswillend
    allurbaddayswillend Member Posts: 355
    edited February 2013

    JenniferW - Congratulations!!!! WOO!

  • sonson
    sonson Member Posts: 162
    edited February 2013

    Shachar- I took a kickboxing class last summer where we actually got to hit and kick a bag with gloves on.  That was the best class I have ever taken!  To actually be able to punch and kick something was more fun than hitting or kicking in the air.  I'm not really an aggressive person, but to punch something physically was so much fun.  I'm hoping that once my skin heals more and this lymphedema goes away that I can do that class again.

    Jenn- Congrats girl, I know that feels so good!  I hope your party was fantastic!  And you will be surprised how fast your skin is going to heal now that you are done.

  • Shachar
    Shachar Member Posts: 229
    edited February 2013

    Herbal Aloe Force is an aloe gel my rads facility was doing a trial on. Halfway through I was really burned and went to buy the good stuff to see if I was getting it. I wasn't, lol. It is made by Herbal Answers, Inc and I have no affiliation with them.

    6/8 done! Party Friday and you are all invited.

    Sonson, I am sure you will be back at it soon! I can't wait to get this arm loosened back up and punching sounds like a good solution, haha

  • Loafer
    Loafer Member Posts: 121
    edited February 2013

    Had 1st Rad treatment today - finally. I now have a sore throat. Is this an SE or am I really getting sick. I am in a clinical trial and my RO does NOT want me to use any ointment, cream or aloe. Has anyone else done this?

  • stride
    stride Member Posts: 470
    edited February 2013

    I think some people get sore throats from radiation in the clavicle area, but after one radiation treatment seems unlikely. More likely a cold? 

    Won't let you use creams??? Meaning no moisturizer at all? For heaven's sakes, what is this clinical trial?

  • Loafer
    Loafer Member Posts: 121
    edited February 2013

    Thanks Stride! Accelerated rads clinical trial - external. Reduces treatments from 33 to 15 days. i go 3 weeks with higher dosage and boosters, rather than 6 1/2. They are taking pics, so may not want to influence clinical trial results. Not really sure why no moisturizer.

  • SwgeeWi
    SwgeeWi Member Posts: 315
    edited February 2013

    Jennifer-Congratulations!! Happy dance time! Have fun at your party and celebrate a new beginning!

    Waitingfor-when my nurse was discussing moisturizing with me she said to imagine a box from the center of my chest, over my L breast, (my left arm is raised), not quite as high as my clavicle, and a little toward the back of my underarm.  It was a much larger area than I expected.  I guess that's why I've seen so many people posting about underarm peeling, etc.  She said to moisturize the whole area, but not within 3 hour of my rads and def. not with something thick like aquafor before rads.  I'm in a ct/rad machine which is supposed to be pretty precise which is also why I was surprised how much was actually getting radiated!

    I had 12/31 today.  I'm kind of red, but it doesn't hurt.  I don't have any fatigue yet, yay! Hoping the weather they're calling for tomorrow skips us. All of this snow is getting old!!

  • cider8
    cider8 Member Posts: 832
    edited February 2013

    I've been finished with rads for exactly three weeks. Two days ago I felt remarkably better. As in it felt like the weight of sleepy fatigue suddenly lifted. No daytime naps (I'm a stay at home mom) and sleeping better at night. I got through quite a few tasks I've put off and just have more motivation. I hope it stays!



    Congrats to those who finished!



  • Loneskier
    Loneskier Member Posts: 44
    edited February 2013

    Cider8

    I fiished rads on 1/29.  This week the fog lifted.  I actually felt motivated to clean my house.  Good thing I have my energy back because there is 2ft of snow heading my way for Saturday.

  • susancats
    susancats Member Posts: 51
    edited February 2013

    Hi all-

    I'm 22/33- done. Only 11 more to go. The rash has turned into little brown flat dots. They gave me a steroid cream (clometrazol?). Lately skin looking pretty red/ugly/angry.



    Annette47- MY husband gave me bronchitis too! It's been since 1/11 and I still have a residual cough. :(



    Question- does anyone else get a "zinging" or stabbing pain in the breast (not during rads, but at random times)? It feel like a quick jab,knife, poke, but then it stops. Usually 2-5 times. Not in same area. Is it nerve damage from rads? Stress? I see my Rads md today, but wondered if anyone else had this.



    I hope you all are doing well- it's a long haul, but seems SO much easier than what I've seen/heard about chemo. A poor man yesterday was starting rads for rectal cancer AND just started chemo this week. He looked pretty sad, sickly and miserable. I'm trying to be grateful for all that is GOOD, and not dwell on discomfort.



    Have a great day!

  • susancats
    susancats Member Posts: 51
    edited February 2013

    Loafer- not sure if someone answered this. NO deoderant with aluminum. Tom's of Maine is what they recommend, but there are others out there.



    NO Moisturizer or lotions??? Yikes! That sounds brutal! Not even aloe?



    Good luck to you!! You'll be done in no time!!

  • Shachar
    Shachar Member Posts: 229
    edited February 2013

    Jenn, congratulations!!! We posted around the same time so I did not see you had finished. Wow, even a position named after you!

    Susancats, a lot of us have had those stabs. I had them after mastectomy as well and maintained full sensation, so I think it was irritated/damaged nerves healing. My radonc agreed. Now that my skin is healing up I do not get them except for the rare zing, lol. I also have some burning sensation in the back of my upper arm just like I did after surgery. That went away before and is going away again now.

    7/8 boosts done! Saw my radonc today and he said I must have rapidly dividing skin cells because I am healing up amazingly fast. All looks well and the nasty cells are gone, gone, gone! Excellent news and I am so ready for tomorrow.

  • damiana9
    damiana9 Member Posts: 389
    edited February 2013

    Hello! I just started rads a week ago.  I have been very disappointed so far because I was told by many people that I may get a little tired but not until toward the end of treatment.  It took all of ONE treatment to kick my butt!  I hope it gets a little better soon!  I am also a tad pink and sensitive too in my radiated area.  ack!

  • damiana9
    damiana9 Member Posts: 389
    edited February 2013

    Susancats- I get a poking sensation usually on the way home from rads.  It isn't painful really but just weird. I have no idea what it is- probably nerves objecting to the torture right before they die off...

  • JenniferW
    JenniferW Member Posts: 29
    edited February 2013

    Susancats,

    Re: the stabbing pains: That's a resounding YES!!  They make me suck in my breath sometimes when it happens or I jump out of my seat.  I pretty much knew it was regenerating nerves, but RO confirmed it so.  It comes and goes, but it's normal.  Doesn't make it any less painful though, does it?  YEOWCH!

    Jenn

  • JenniferW
    JenniferW Member Posts: 29
    edited February 2013

    Today is the first day of the rest of my life!  That's how I'm looking at it.  I had the best day yesterday.  The party after my treatment was a blast!  I got a ton of flowers, a "menopause" bag from my sister to help after I start taking Tamox, including a copy a book she co-wrote about coping with intimacy issues after cancer and its treatments.  It's recommended by the Komen Foundation and it's gotten a ton of great feedback from many organizations in the US and Canada.  If anyone's interested in it, hit me up in a private message.  It's pretty freaking awesome! 

    I hugged everyone at the clinic yesterday.  I will miss the people, but not the treatments!  Now, I just need to heal up this peeling, very sore skin and I'll be right as rain!  I'm just so happy to have that part of my BC journey over!  Hang in there ladies, it's coming!  

    Jenn

  • SwgeeWi
    SwgeeWi Member Posts: 315
    edited February 2013

    Yes, I have those sharp stabbing pains as well. I wonder how long it takes for those nerves to reconnect? My surgery was 11/29. It's my day to see the RO, so I'll ask her.

  • PatinMN
    PatinMN Member Posts: 920
    edited February 2013

    Huh.  Now I feel abnormal because I've never had a sharp stabbing pain!  Tongue Out

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