Summer 2015 Rads

ksusan

It's good to have a family nerd. That's the person who actually knows how likely it is that Yellowstone will blow, or how to make a solar water still.

Have I mentioned the 29 shelves of science fiction yet? But that's just the paper ones. No? Okay, then.

littleblueflowers

1 in 10,000 chance yellowstone will erupt. I can make a solar oven, does that count?

JenH2015

MaryJC - I don't know if it is the radiation, but the weekend after tx3, I went for a run (the first decent one I had since I started Taxol in April) and my knee started hurting. It was not bad while I was running, but by the next day I could barely walk. Problem was very focused (a point on the inside of my right knee that hurt not only to walk but also with any pressure.) I saw a normal doctor who felt I had torn one of the ligaments that helps provide lateral support. It is doing better after a few weeks using a compression thingy, advil and taking it easy, but this is the first time I have blown out anything with out falling/twisting/doing something specific. (It may just be that I was out of shape because I had not been running.)

ksusan

Littleblue, sounds like your brother may not be the only nerd in the family?

april25

I had taxotere and I had some neuropathy. I got referred to a neurologist during chemo by my MO. I actually tripped and injured my ankle and the nerve went numb. The neurologist did tests and said I had chemo-related neuropathy in both legs and that it probably caused my foot to drag and for me me to trip... it was a slow thing, so I didn't notice the weakness, but it was there. But he also said there was pretty much nothing I could do about it. Maybe some PT could help, but not really. Nerve damage either had to resolve itself on its own or maybe there were some controversial treatments that might help (he, personally, liked infrared light treatment, but said some doctors didn't believe in it. I asked about homeopathic stuff? And he said maybe Tumeric extract and Alpha-Lipoic acid might help). I never had pains, but I did get cramps in my legs and feet and sometimes some extreme tenderness in the feet. Good news is that I think it is slowly getting better... VERY slowly, but it is. The neurologist said, during 2nd or 3rd appt., that things looked good that I should only come back as needed. My injured foot is still numb on the top, but at least I'm walking a bit better on it. Still a bit worried I'll trip again and injure it, but as it's getting stronger, that worry is much less.

But, yeah... I think neuropathy is a lot more common a SE than they tell you. I probably wouldn't have thought I had it at all without the nerve-test. I was so weak from the chemo that it seemed that the leg weakness could have been caused just by being in bed so much! (I could barely do anything during the last cycles. Least bit of movement would have me puffing for breath). And I guess my neuropathy was minor, anyway... but it was bad enough to cause nerve injury and for me to sprain my ankle... bleh.

I'm still not up for walking long distances because of my injured foot/ankle/numbness/drop-foot.

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MaryJC -- I was baring my breast for just about everyone for a while there, too. For the first rads treatment I thought I had to have the area exposed, but the tech kept coming around and covering me up! He'd just peek under the short gown to check I was in the right position, leaving me covered and only lifting up the edges and seeing the little mark/sticker on my side, which at first I thought was weird! Now I'm getting used to them keeping me covered up... so I may go back to being more modest after a while!

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I'm now used to being red (just got 27 of 35). Slathering on the calendula and aloe vera... got some hydrocortisone because some areas feel a bit itchy... only not quite. That seems to help a bit. Got some of the corn starch baby powder to help with under-arm rubbing. No blistering so far...

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ksusan --- I love reading SF! and fantasy (had to stop buying books, though, because I already have hoarder-level amounts. It's all e-books now). But I have no head for facts, so have no idea of the numbers on Yellowstone going super-volcano on us... Or doing anything so useful as making a solar still. Come the Zombie Apocalypse, just let me be one of the red shirts, since living without the internet would be a hideous fate! -- I usually go to ComicCon every year and have a pass for this year, but with rads and other stuff, didn't feel up to going down to San Diego this year...

Midgiemoon

Happy to say my short term disability claim has been approved... I can work 4 hours a day from home and use STD the rest of the day, or I can just use STD if I want, and just rest.

Happy to have such a great job that lets me be flexible...

ksusan

Midgiemoon, that's wonderful!

Hopeful82014

Glad to hear that, MM!

Day 21 of 35. Had that feverish/shivery feeling that you get from a sunburn all afternoon/evening yesterday. I hope that's not going to continue...

FastWalker

Hi Ladies,

Had treatment 8/33 today. (Monday was canceled because the machine was down.) Thought I was going to skate right through radiation since I didn't have chemo. Well. . . I ended up with a skin reaction to Calendula. (It's all natural - how could that even be?!) Then I had some swelling on my breast and underarm after walking on the treadmill so I asked the doctor if I could wear the compression bra from my lumpectomy - he said sure it won't hurt you. . . I wore it yesterday and when I took it off, everything was bright red! Ugh. . . I have an MRI with contrast tomorrow after radiation. I asked everyone if it's safe and they all assured me that it was. But, truthfully, I am afraid that the contrast is going to cause a reaction because everything else has so far . . .I also have a MRI on Saturday with contrast. (I have nerve pain all the way down my arm so they are doing one of my neck and one of my chest to make sure they don't see anything "suspicious") . . . When I swell up, I also get "zaps" in my breast. I guess the swelling is irritating the nerves. I was told to try some ice - just not directly on the skin. . .Does this fun ever end? LOL!

FastWalker

BTW, the radiation tech told me today that we'll even need to be very careful with our skin NEXT summer and to stay out of the sun NEXT year. I told her I am glad she told me because no one said anything. She said that they'll go over everything with me later. (I wasn't even told to stay out of the sun THIS summer lol - good thing for these boards! )

movingsoccermom

My experience with symptoms such as fatigue and skin issues was a roller coaster. One day super tired, then more than a week before I was tired again. Skin was great until tx21/25 whole breast. That was when skin under boob and under arm turned black and started cracking and hurting. Had worn underwires to that point, and had to swap to something more unstructured which drove me nuts. Now two weeks after boosts (5), skin has mostly healed, but still super sensitive, and bras remain a nightmare (38 e). Fatigue still fluctuates, but steadily improving.

Best wishes to you all!!

ksusan

How crummy! Be aware that Miaderm contains calendula.

As for "natural," that's no protection against dermatitis. Poison ivy is natural, too

FastWalker

ksusan, I thought about ordering that Miaderm stuff. So glad I didn't! It's now plain ole Aquaphor for me. I was surprised that I reacted to calendula that way - I usually don't have allergies or problems with things. The radiation tech said it's not unusual for reactions to happen because our skin is super sensitive right now -- and will be for some time.

ksusan

I have all sorts of dermatitis scarring from things like tape, or the hypoallergenic radiation marking stickers, that I wouldn't have reacted to before. Nor would any of my soft cotton shirts have made me want to scream with their scratchiness. Nor would a blanket on my chest have seemed like a torture device. I hope someday I'll be able to tolerate a bra and foob fitting. I can't imagine it at the moment.

PatRN10

Midgie, Great news about your STD! Tx #3 today and feel some fatigue already.

FastWalker

ksusan: Aw, so sorry. None of that sounds any fun at all. I already warned my family that I may be airing out the girls during the day as radiation progresses. (And not to come in my room unless they want an eye-full lol!) Shower water is another thing that becomes "interesting" in all of this. (Gotta aim that spray at a certain angle or the nipple is none too pleased.) Hope yours settles down real soon and you can go bra and foob shopping soon!

PatRN10: I thought you meant something else when you said STD. *gulps* LOL! Yes, Midgie -- so glad you can dial it back. You need to rest and take care of yourself!

PatRN10

Fast Walker, LOL .... I hadn't thought of that!

sailorbev

Great news, Midgiemoon!  I am so grateful to be retired so I don't have to juggle work and cancer treatments. 

Finished treatment 12 today. I am 1/3 of the way through. I noticed that my skin is looking a little tan in the treatment area. No fatigue yet and I hope it stays that way. 

Midgiemoon

12/33 done today! My skin is not happy but at least my hubby had the day off and got to meet my rad techs and see the machine.

The other day I asked them what happened to the mold of my back when I am done with treatments. I was happily surprised to hear that they put air back in the and reuse them on other patients! I am digging the environmental Approach. I'm kind of glad that they don't throw them out. The thought of a dumpster filled with body molds is creepy!

Soldier on friends!!!

Marksgirl

Movingsoccermom  I am having word for word same experience you did!    Day 21, skin under boob and under arm rashy, turning dark and peeling, cracking and hurting.   I was fine and working out until then and even wearing a loose underwire.   Not anymore!     Our machine has been down 4 times so far (out of 24) and today they said they could not get me in later and I would have to tack it on at the end.   I cried all the way to work.  Its like running a road race and having them move the finish line back just when it is coming into sight.  They did end up calling me back and I went back in later.    So glad I only live 15 minutes away and my job is flexible.    My first patient did not seem to notice my red eyes and face, 5 o'clock shadow half eyebrows and scant lashes!    I did not use anything on my skin per radiologist instructions - no lotions, nothing until lovely Day 21 hit.    Then they gave me bright yellow Acriflavin?? which you paint on with a cotton ball.  So radiation camp does include painting!  

april25

28 of 35 or so, today. Super-red skin (started out looking tan, but not until after 2 weeks). I was told to put calendula and aloe vera on from before day one of treatment. Someone said they weren't recommended to use Calendula because some people do have a reaction to it.

Techs and then RO told me that today was my last "regular" treatment. They told me to take Friday off and return Monday for the first of 8 boosts where they will use that focusing stuff (gah, memory is terrible!). They warned me that the specific area--around my incision and where the tumor was-- would definitely get red, or redder, because they were focusing on the skin in that area. But they said the rest of my breast wouldn't get any more radiation and should start to heal up. I asked if I should do anything different--different creams or whatever?--but they said no, just do the same, or put more on (just not right before treatment).

They didn't tell me anything else, so, just how different are these boosts? Shorter? Longer? And what is the thing they put on you to focus the radiation?

I'm lying on my back, no mold-thing.

I went to look for more comfortable bras today...

And no rads tomorrow! Another 3 day weekend for me!

ksusan

Is it a bolus?

april25

Ksusan -- Oh, that might be what they said! Heh. I keep thinking I don't have chemo-brain or rads-brain, but my memory isn't great these days!

So-- a bolus! What the heck is one of those things like? I'm just curious. I know I'll find out in-person on Monday!

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Oh, and another thing... I went for my Herceptin infusion and they always do blood tests and one of the things they check are the white and red blood counts. Apparently I'm still a bit low from chemo, but slowly moving back to normal. The RO said that radiation can slow that down since I'm getting my sternum hit a bit and that can be enough to affect the blood cell counts. But they don't worry about it unless things aren't improving or are getting worse, which is fine by me. I've had enough bad SEs from chemo. So far the RT SEs have been there, but nothing that needs special treatment... yet!

patty101014

hi all. I am new to this thread. I had 11/33 today and the fatigue is definitely kicking in. I am tan/pink in a big square in the front. And feeling random pain in my lower scapula.

april25

The techs and RO told me that redness could start at around week 2...

Yep, I know about the tan/pink square! I'm glad mine didn't start really getting red until around #20... but have to say that it's stayed about the same redness over the past week.

I'm not looking forward to the boosts as they told me my skin would get redder!!! But if that's all, I can deal with it. 8 more to go for me...

BayouMama

Thanks dragonista17 and others. I saw the RO today and had some time with the nurse as well. Confirmed I'm getting the "short course" and that, because of the higher doses my side effects at this point are pretty normal. I've had 7/20.

I have a square area of pink, teensy red dots that are itchy that RO says are hair follicles that become inflamed. Also have fatigue...worse now that it's end of the week. Doc said I could use a cortisone cream for itching, nurse called it benedryl lotion. I have a 1% cortisone cream from an allergic reaction post-surgery so just tried that.

As for fatigue doc said to take a B Complex supplement, might help, so did that tonight. Also said to take advantage of Sundays when I'll have more energy. I'm still working but lose steam in the afternoons and am basically worthless in the evenings. Tomorrow will be my first fifth-in-a-row. Will be a zombie for sure!

On a lighter note look at the smile I get to come home to...

BayouMama

ksusan that was hilarious!

BayouMama

I have the same question as April25 about what to expect from boosts. I have 16 tx and 4 boosts.

ksusan

My bolus is flexible and kind of like having a rubber tub mat on my chest.

Found a photo online:

april25

BayouMama -- What a sweet puppy! ... I'm staying at my sister's for my treatments and they have the cutest little dog... and I don't even need to take care of him (although I wouldn't mind--he really is just too darling!). Pets are wonderful!

ksusan -- That's a bolus? Wow. I'd never have guessed. I thought it would be some small thing, since they told me it was to focus on the small area around my incision... hmmm! Well, it'll be interesting to see how it goes when I start on Monday! Thanks for finding the photo and posting it.