Summer 2012 RADS HANG OUT

Stacie, I may not be 100% the same but I hope to be 95% the same.  Now that I can run, I feel more in control of things.  Now that my rads are starting next week, I feel like things are moving forward.  The part that I don't want to be the same is learning to not stress about crap in my life.  Everyone has crap!  I really understand that the tomorrow is not guaranteed.  I had one event in my life that was worse than this and I got through it.  So, I am trying to be positive and know that I will get through this too and enjoy life.

Stacie, thanks for you kind words...had to edit to make sure I said that.  It's frustrating when healing is slow. 

Went and had my scan and 6 tattoo's today it took an hour to do and it was painfull for my arm. I start on 2nd August and DH can't come with me so my friend will come the first time ( going to another hospital )

Not looking forward to having arm pit, chest wall or near the bottom of my throat done.

Jpmomof3, I know it's a crapshoot when you find out you have more positive nodes. They told me i had four in the beginning, I had chemo frst then surgery and they think it was more than 9.

I hope you heal well and get it done soon it sounds if your on the mend.

I was in terrible pain with mine and it's only now I have stopped the meds but I get all the SE going with everything.

JPMomof3:  you  look beautiful!

I am four weeks pfc. But my last round of chemo was taxol weekly for 12 weeks and the hair started growing about halfway in to that. They did an axillary dissection but only took about 3-5 extra nodes out so it wasn't extensive and so far my pain is minimal and mobility is excellent. Stacie, sorry to hear you are having so much trouble with the AND. I hope it improves and that you aren't having trouble with lymphedema. That is one of my big fears.

Thanks! kjiberty, It will come, it accelerates as that chemo fades. You will be there soon enough!

Hey Karen - first rads went fine, a little longer appointment because of more xrays and re marking, but i think tomorrow will be quick and out.  How was yours?

Kim,

Ditto.  My next one is at 6:50 am --same time til Tuesday--then it's 8 am the rest of the time. What cream did they give you?  They gave me Miaderm. 

Concerning lotions/creams...I would personally suggest using it right away (as soon as you start rads), at least two times a day even though you can't see that there are any changes to your skin.  In my case the skin reaction did not show up until about half way done.  I started with Aloe, but switched to Miaderm when my skin got a lot of really red bumps.  I wish I had used Miaderm from the beginning because it definitely seemed to stop the redness/irritation from getting worse.  The Miaderm is great in that it is not greasy and it really keeps your skin soft and not feeling chafed (and there is some clinical data behind the 3 active ingredients in it so I think the stuff really works).

Thanks slak - I will start using the miaderm!  I like that it isn't so greasy!  I will also look through my bras and see what i can find!  

I will be starting bilateral rads to the chest wall and supraclavicular and infraclavicular and axillary nodes mid sept. I met with the RO who said people use lots of different creams and swear by them, but, in studies none work any better than aquaphor. Didn't offer miaderm.

So you buy it on line?



If you can't wear a bra, can you wear the camis with the breast forms in them? Or are you too sore?

Stacie, I've been following this thread because of catfromfl.  We 'met' several years ago.  I read up above where you are wearing a compression sleeve for flying and at night.  A daytime compression sleeve is not intended for use at night.  It can bunch up and you'd not be aware.  There are different garments for nighttime wear. 

Sorry to interrupt the thread.

Stacie, yes both breasts had lots of cancer and lots of positive nodes at diagnosis! I kept being told i had cysts and mammo and US never showed anything. After bx of one of the "cysts" showed cancer, I insisted on breast MRI which showed multiple cancers in the The other breast that I had been feeling a mass 6 months earlier. The lobular cancer often presents on both sides and is very hard to detect so called sneaky. so rads both sides at once aiming at the chest wall since breasts are gone, and the nodes around there.

Hi nkb, can I ask how many positive nodes you have? I see you haven't put your stage on here.

Ali68. I haven't been able to look at my stage in writing so didn't fill it in there until today, there is just so much information one can handle at a time. When I did fill it I today I forgot to make it public, will see if it shows up this time. Seems a little confusing to know which stage you are sometimes. Because I have more than 10 nodes I am stage 3c.



I am scared for sure esp reading how many young people have progressed, even those with no positive nodes. My MO just says you have a lot of nodes, I am giving you the most aggressive treatment we have. I have to trust him and I try not to obsess and worry too much all the treatments keep me busy and make me feel like I am doing something, I fear the rads, but, part of it is that it is unfamiliar to me. Also, I keep running into providers that have not treated many people with bilateral disease