October 2011 Rads

Kay_G

I think you wanted to ask Mostly Sew the question about the cornstarch/lotion.  I am not using corn starch, only lotion.  Also had DIEP 9 weeks ago now.  That may have something to do with the lotioning, although I have heard this recommendation from women who have been through rads.  My PS told me to use lotion, but first to make sure it was okay with RO.  I guess having the reconstruction makes it extra important to get through rads with as little damage as possible.  Probably not as easy to repair itself as if you haven't had reconstruction.

I wouldn't go any where else either.  I agree that academic institutions are more cutting edge and have really great docs too.  Not that there aren't great docs at non academic institutions.  I love all my docs.  I do get a little tired of having to go through things several times though so the resident, fellow and sometimes student can get experience.  I think residents and fellows also played a part in my surgery.  I am not sure what though.  I love my PS, and she has an excellent reputation for her reconstruction.  I am very curious what parts of the surgery she did herself vs. let the resident, fellow or God forbid student do.  At any rate, I am very pleased with the results.

CarylC

5kidsMom - I've had a bi-lateral mx with no reconstruction.  My rad tech told me I probably wouldn't want to wear a bra once into rads (I haven't actually started yet) but just said no underwire allowed.  I typically just wear a soft microfiber type bra with foam bead forms so I'm hoping I'll be okay!

MostlySew

Hi Martha,

Yes, I'm using both lotion and corn starch. I let the lotion dry thoroughly ( aloe Vera, miaderm or calendula) and then use the starch. It avoids sticking or abrasion. I pit the corn starch in a stocking and use as a pounce, especially before exercise. Hope that helps.



#19 today. Some really dark " tan marks" on my sn and top of breast.

poohnutw3

Hey all, I go tomorrow for my "dry run" I am guessing that I will not get radiation but I am not sure. Did anyone get the radiation then or is it after you get scheduled for your regular appts.  This is all so overwhelming. Also I do not use commercial lotions and such I plan on using aloe and a healing salve by Kumba Made has anyone used just aloe the whole time. If you have a Trader Joes in your area they have a great deodorant and there is a company Uncle Harrys Natural Products that has wonderful deodorants made with essential oils. I know, I know my kids call me a hippie all the time:)

 Have a great day everyone. Stay positive:)

Joan811

Dawmson - classic story about the panic over the spot (seed)...we will all be doing this at some point in our lives...And good luck with your appointment.
Susan (paintingmywaythru) - I made an appointment with another MO but cannot get in until Nov.  Meanwhile, I plan to start rads.  I was thinking of keeping the appointment since I will need an MO for at least five years.  I think I will look around for rads
My current MO has decided that I should begin Arimidex now until I get completely set up with rads.  Then I will stop the hormone therapy while getting rads; then resume when done.
Well, at least I'll be doing something.

MostlySew

Joan811,

I took Arimidex for 1 month between surgery and the start of rads because rads were delayed. I felt like you that I was at least doing something while waiting to heal. Didn't have any SE's either, thankfully.



Poohnutw3

My rads started the day after the dry run. I've been using AloeVera almost exclusively until now ( #19 today) but I'm adding in Calendula (homeopathic) and Miaderm since Aloe doesn't stop the pain which is beginning. It works great on the heat though.

Paintingmywaythru

MArthah...I have similar feelings...liek lead feet...think I am anemic...just tire quickly and get out of breath, but maybe it is the neupopathy liek you mentioned. Anyway, lets hope that ina  few months we have hair and are feeling a whole lot better!!!!!

And the nails...oh yuck...but you are right they will grow back....

Snoopy73

Hello ladies; had my number 6 yday, 24 more to go!! I have a question regarding Flu shot... we have a Flu shot clinic here at work today and was wondering if i can get a shot while going through radiation? Tried to call my RO office, left messages... anyone advise will be helpful!!

 Thanks

Robyn6463

Snoop - I haven't started rads yet, soon, but they gave me a flu shot at my last chemo. Just make sure it's the killed virus! No live virus for us! 

Kay_G

I asked the doc on Monday when I saw him and he said it was okay to get the flu shot, no worries of white blood cell counts like in chemo.  I am still going to wait and ask my onc next Wednesday when I see her though, just to make sure.  She does check my counts, RO didn't.  Just to be safe.

Snoopy73

Thanks for all your feedback on getting the flu shot. My Rad NP called me back and she said it was okay. I chose not to get the shot though.. meeitng my MO this anoon, will confirm with her and make a decision.

Kay_G

Ugggg.....just got called.  My 3:20 radiation appointment got cancelled.  Machine is down.  Will add a day at the end.

Paintingmywaythru

Kay 1963...dang...sorry

Was told my onc and rad onc flu shot A OK during rads....

Teresa5

My RO spoke with me in depth yesterday about the left side rads and exposing the heart to radiation. He had discussed with me previously as my tumor was on the left side. He stated that it would be unavoidable as my tumor had extended into my chest muscle.  I asked him about the prone position and the deep breathing that some of you spoke about in earlier posts. He advised that the prone position would not be helpful to me because of the location of my tumor. The deep breathing would not work for me because of my personal anatomy...  he stated that my heart is right up against my chest wall.  Again he re-assured me that the benefits of getting the full rads out weigh the side effects that I may have from any radiation to my heart....still scary stuff.  Well, off to my appt! 

poohnutw3

Thanks so much Mostly Sew, I really don't want to use anything with chemicals in it if I can. I will start checking into something for pain. Do you go to a Naturopath to by any chance? I am thinking of seeing one here, he does complimentary treatments for chemo and rads, see what he has to say. Of course though my insurance does not cover so it will be 185.00 for the first visit 

5kidsMom

Kay so sorry you got cancelled for today.  My hubby is really big on planning a "celebration" when rads is over, and I keep telling him not to.  Not sure I will feel like celebrating if I'm sore/fatigued/burned and the whole thing about adding days.  He keeps asking when is the last day, and I tell him, "the last day will be when I get up off the table and they congratulate me, and tell me NOT to come back the NEXT day!" 

I have such a hard time with changing the plan these days.  When things don't go like I think they will, I end up in tears.  I hate being that way, so I'm just planning on doing rads every day till further notice

hey, is anyone else scheduled for 38 sessions?  feeling like this is one l-o-n-g haul to go through!

dexxy

poohnutw3-I go to a naoturopath who specializes in cancer treatment, and an accupunturist.  They have both helped me get through chemo and treatment with very few side effects.  worth the $$$.  Plus they can give you a list of herbs and vitamins that will help prevent colds and viruses.

Snoopy-tmrw is our 5 week mark! congrats.  Now if the hair would just grow.......

dawmson

MostlySew, can you describe what you mean by putting the cornstarch in a stocking and using it as a pounce before exercising? What sort of stocking - like nylons? What is pounce? Sorry, I'm probably just clueless. 

Teresa5, that's a bummer to hear about your heart position and tumor position. I truly hope you end up with no side effects to your heart! 

sam1234long

I am also a newbie! Saw a segment on news about a new radiation instead of 6 weeks just a few days..is this what your doing and how did you find out more about it?

llm005

Hi everyone

Had #16 of 25  today. So far, so good, now that my other breast is no longer getting zapped as well.  I am less tired this week than last but maybe it's because it was Thanksgiving weekend here in Canada and I got an extra day off. 

Mostly Sew I hope the pain is not too bad and gets no worse.  My breast is pink but there is no pain.  I have been using calendula gel for a couple of weeks as the other cream recommended by my RO smelled like petroleum.  I like the gel, it is very cooling, probably like Aloe. Hope it does the trick for pain too.

Teresa5, that must be very scary for you - one more darned thing to worry about as if you don't already have enough on your plate.  I'm sorry you have to go through this as well but hope that you have no heart-related SE's

Kay_G

5kidsmom, thanks for mentioning about the tears.  I have been in tears today.  I don't really know why.  It was from before the call about rads.  Went to the dentist today.  I don't know why that put in tears, but it did.  Maybe just because I did something normal for me?  I really don't understand it. 

Teresa5, I am sorry that must have been scarey to hear.  I have a pretty bad (compatively to most people) and so have a higher chance for recurrance.  Some one on the boards told me that percentages don't really matter to us as individuals.  The only that matters for you is either a 0% for no recurrance or a 100% if you get a recurrance.  It helped me.  Maybe you could look at the rads damaging your heart like that?  I am sure that the chance of damaging your heart is low.  We are all putting a lot of faith in the docs and techs to know what they are doing and keep us safe.

sam1234long, I am getting 28 rads.  I think someone on the thread is getting the fewer type.  I don't know anything about it.

MostlySew

Hi Dawmson,

Yep I used a nylon stocking and just put some in it and tied it closed. I apply the cornstarch by just gently rubbing this over the skin under my breast and under my arms. Sometimes I sort of pounce it a bit to get more out......like a powder puff. Works great for me. Read about it on another thread here.



Ppohnut, I don't go to a natural path, but a friend does and thinks he's a big help. I'm just allergic to lots of things so try to stay as natural as I can. However, I must admit comfort is important to me too so will use what I can to be comfortable. I'm loving the calendula cream right now as it certainly has alleviated the pain and my rash/burned area looks better!



Kay, I hated it when one of my appts. was cancelled. It put me finishing on a Monday which thoroughly bummed me out. My husband pointed out that perhaps it won't be the only cancellation.......hmmmmm....not sure what to think of that one, but it is one way to look at it! Lol. Anyway, He's been giving me presents on Fridays as a "one more week done" celebration. Very cute. I know what you mean about a celebration when you're done though. Initially I thought "no way!". But the closer it gets the more I think yep....at least dinner out would be good......if I can have a nap first!



Teresa5, I'm glad you talked with your RO and got a full explanation. It sounds as if he's a very careful, caring doctor and you've made a difficult decision but the best one for you. I know from other discussions with my RO that they can control just how deep the rays go into your body, unlike what they were able to do 10 years ago, and I'm certain they'll be extra careful with you. As a friend says, cookies for the techs can't hurt though!



Speaking of bribes, I'm trying to figure out an appropriate bribe for my techs so they will stop burning me daily! Apparently haven't found just the right thing though...



#20 of 33 done. I almost feel there might be an end to all this silliness. I already feel cancer free, this is just icing on the cake ))))

MostlySew

Hi Ilm005

Thanks for checking on my pain. The calendula is just great! Seems to not only take care of pain issues, but holds the heat down too. I swear this boob looked way better this morning. Course after treatment today thats another story. But my latest love is Calendula Cream....but don't tell my DH!



I too know about this tears business, 5kids and and Kay1963. Tears have become a way of life around here recently. My husband handles it really well though and the storm passes pretty quickly. I never know what will start them off, but sure wish they'd stop. Ah well, this too shall pass!



Have a good evening everyone, and take care. I'd send hugs, but sometimes, due to typos they turn into bugs! Gaaaaaah

dawmson

Just got back from #1. The actual treatment was a breeze - I thought they were still doing setup tests and then they came in and said I was done. 

I came home braless but felt itchy from my shirt touching my chest so I put the bra back on. Still itchy and hot. It must be in my mind - can I already be feeling this way after only 1 treatment? It feels that way on both sides, so it must be my mind ... I'm only having the left side zapped. 

Kay_G

I'm sure our minds can play tricks on us, but when I told the doc that I thought I was pink after the very first rad, he said that sometimes the treatment can give you an immediate side effect like that, but then it usually recedes.  Maybe it is the same thing with being itchy and hot.

The scar from the MX is definitely very deep pink looking.  Probably not a good sign of things to come for me.  I'ts only been 6 txs.  Not sore at all though.

marthah

Welcome, sam1234long! I don't know of anyone getting the short treatments here. I'd suggest talking with your RO about your options. I'm scheduled for 25/26ish treatments, to be followed by possible boosts. They told me in the clinic that they finalize those details towards the end of the treatment, so I'm just playing it by ear right now.

#2 went fine today. I felt some twinges a couple of times during the day at my scar/tumor site (lumpectomy on 4/25), but as others have said, I think I'm just being overly sensitive about the whole thing right now. Mostly I'm still so grateful for the chemo being done, and it's been 1 mo & 3 days! LOL

Jandot

Just had #2 today, not bad except for the wait. I never have time to read for pleasure, I'm guessing I can get through some good reads during all those wait times.



Martha, i totally hear you, could have sworn I felt some twinges and warmth, probably being a little paranoid. Totally understandable!



Sam1234long, some facilities offer some alternative options that are shorter, but not everyone's cancer fits the requirements to qualify for them. Talk to your RO, a second opinion is a great idea if you have questions.

marthah

Just sharing one of my favorite resources, since I've worked with academic health care:

http://cancer.gov/cancertopics/types/breast

5kidsMom

So before I went in for my rads today a lady showed up and told me she was a social worker and she'd like to see me after the treatment "we do that with all the patients here".  I tried my best not to be cynical or mean, but my thought was "come on.  I was diagnosed 1/31 and NOW they are having a social worker see me, to see if I need support etc?"  Honestly, I coulda used that listening ear many months ago.  At this point (and I told her this), I see radiation as the last stop on this journey, and I can't wait to get through.  I'm not about to hash through any emotional "issues".  Had she seen me during my six months of chemo, perhaps.  Really coulda used her before my mx as I was NOT coping well with that.  Just felt kind of insulted that I "had" to meet with her today.  Maybe I'm just cranky.  I'm sure I could have refused, but then they look at you as if there is a problem. 

Goes along with the tears thing.  I really HATE that so often they assume I have no where to be and nothing to do.  Since I am there every day, couldn't they have mentioned yesterday (or another day) that the social worker would like to see me?  My 16 yr old was watching 3 of my other kids, and I hate leaving them for a long time.  I try to "obey" their rules and jump through their hoops, but it really helps me to have a little advanced notice! 

okay, whining over. . . . back to the regularly scheduled program! 

Joan811

5kidsmom - how come we have to wait weeks for an appointment but the SW doesn't have to make an appointment with you....
I had a phone call with a friend of friend who is 5 years post chemo.  The one thing we agreed was unexpected and overwhelming is the isolation we feel.
For some reason, i feel disconnected from most other people I see, including coworkers and family members.  When I feel totally alone, and something even minor occurs (like a canceled appointment or a dr. doesn't return a call) -- then the tears flow.  It's not like I can phone a friend and try to explain why a canceled appointment is putting me over the edge. 
And that's why we are here....
Mostly sew, are there significant differences among calendula cream brands?  What to look for?