MARCH 2018 starting RADIATION

FelineMum,

Thanks so much for letting me know! I had no idea. Probably will get more Miaderm through Amazon, then.

Set up appointment was easy peasy. They didn't say anything about prone position, but I guess I can ask that on Monday. :-) The RO said breath holding isn't necessary because the make sure not to hit any "important" things directly and the scatter is so minimal it doesn't affect heart/lungs/etc. So interesting to see/read different takes on it from across the country and world.

Feline - That helps - thanks so much!!

metoo - I got my markings and tape today. I start Monday. I can't imagine them lasting until the 27th! What kind did they give you?

I start Monday at 9 a.m I'm ready to get moving on it!

Hey Petey,

Glad to help. I bought mine off of Walgreen's website. Where I am, Walgreen's doesn't carry it in stores. It's $4.99 for 20 ounces. I price checked on Amazon and it was about $18 there.

I have left side BC. That's the main reason my RO is having me do deep breathing. My targeted area also crosses my breast bone and is supraclavicular. I'm fine with minimizing the risks and it also distracts me from the process. I've had two simulations with deep breathing, a deep breath evaluation and a training session. I use a huge mouthpiece and my nose is pinched shut. I also wear "googles" with a computer screen instead of lenses. I can see my breath there as a chart. I breathe until my inhales and exhales match the desired pattern and then wait for the cue to hold it. A tech told me to put my tongue on the roof of my mouth when holding my breath and it's amazing how much easier that is.

Veeder, Maui will be so sweet!

Felinemum, My targeted area is similar to yours. I don’t have to use a mouthpiece or have my nose pinched though. Thanks for sharing the tip on the tongue placement.I’m going to try that tomorrow.

The longest I’ve had to hold his 30 seconds. I’ve been told that the machines are so smart that if we can’t hold our breath and start to breathe, the machine will turn itself off.

Meg101,

You said it so well! The various forums on the BCO site have taught me so much. Everything my doctors have said about radiation has been much more vague than chemo or surgery. Our forum on Radiation has been very valuable on educating me and teaching me what questions to ask. Like you, I am grateful to all.

In the end I know I will still have radiation despite the risks because it’s the insurance policy that helps to keep me alive… But it does help to be informed!

I’m so happy that your first treatment went well!

Hi DoubleBloom,

My RO and MO say it starts at diagnosis. When I met my RO for the first time, it was two days after my 1st Dx anniversary. After an exam, he told me "Congratulations on one year NED." I asked what NED meant: No Evidence of Disease.

I think a lot of people have different dates for their anniversaries. Like, when they suspected something was wrong; the day of surgery; when all treatment ended. I've seen the term "mammoversary." (although I don't know which milestone it refers to). I acknowledge the day I found a lump. But I use Dx date as my 1 year, 2 years ... date.

I'm glad it sounds like your rads are going well. I have back problems too. I'm on my back but with a cradle that supports my neck and keeps my arms in position. I also have started being vocal about how I need to be helped backward and then back up when on the table. I realized that if on a bad back day someone offered me a hand to get out of a chair, I'd tell them how to best help me. The wrong help too often hurts.

Right before Thanksgiving, I'd done everything including a dry run and one treatment. But the dry run was horrible and when a machine malfunctioned, I was left on the table for at least an hour without anyone checking on me. The mouthpiece is attacked to a mechanical arm and the googles are taped to it; my feet are rubber banded together; there's a foam wedge under my knees and I had just had carpal tunnel surgery on my non-cancer side arm. i.e. I couldn't move, speak or see. I was in a lot of pain during and afterward. But I said nothing and even came in the next day. The day after that, I had an emergency appointment at my orthopedic practice that was followed by two more appointments in less than two weeks.

My saying nothing after the dry run or the next day was used as "proof" that I was exaggerating. No one expected me to come back. The severe back probs lasted for about 3 weeks. And then it was the holidays and I got a second opinion at U of Michigan in early January. I started Xeloda (oral chemo for TNBC) in August, so I chose to finish that before resuming rads.

Meg101, you couldn't be more right when you say to be your own advocate. No one else can do that as well as you can. You know yourself and your body better than anyone. Period. You are the expert on you. Ask lots of questions. If the answer doesn't make sense, say so. If you can't get an answer, ask someone else. If your gut says "No!" listen to it.

I wish I had listened to mine sooner. My chemo didn't include "A" just C + Taxotere because my former SO (who says she's also an MO) saw no need for it. I didn't know that until months later, but something always seemed off. Questions and concerns were treated like the silly worries of a silly girl or absolutely everything will be just fine.

This time, I'm approaching rads as an active participant who has fully functional vocal cords. When my spine flares up, I have muscle spasms from my lower back to left hip down to the toes on my left foot. Rads isn't possible if that happens. If needed, I'll happily make the consequences of aggravating my back probs clear. But I hope I don't need to.

Um, thanks for letting me vent!

FelineMum,

Thank you for sharing your experiences. I love your term "active participant". I used to be a nurse a long time ago and I come from a family of many physicians and this year will celebrate 25 years of being married to one too! I have a deep respect for the profession and value a good doctor or nurse with ample clinical experience, however being on the patient side of the medical field changes everything and hubby wholeheartedly agrees. Especially during chemo, I had a lot of atypical symptoms and had two hospital stays. I learned to interact with doctors and nurse and other staff so I wouldn't just sit there and be told! I asked what every pill or treatment was for and why my care was the way it was. I was careful not to sound questioning or threatening but made it clear I wanted to be aware and educated. Trust but verify! Though medicine is an imperfect science patients have a right to have their questions answered as best as possible. My husband who was already an empathetic doctor (okay... I'm biased!) says he has become an even better patient advocate since he's now been on the receiving end of medical care.

I learned something new from you regarding Xeloda for TNBC. I was treated with the typical AC followed by Taxol. I'm so happy that you are NED! So far I am too.

It is remarkable how many of us have back problems!

Nancy,

I've heard it can take the hospital's physics department up to two weeks to formulate your unique plan. You're right at that juncture. Would it fee appropriate to call them for an update?

Hoping everyone has a happy weekend!

Thank you for listening DoubleBlooming. My RO told me 1-2 weeks and I heard from them today. I have a second round of planning on Monday. I guess I'm getting a little impatient, but al least I'm back on track now. Stay strong everyone.

I had the 2nd of 20 rads today. So far, so good. I haven't felt any discomfort or fatigue. I wore a sleeping mask for today's session which was finished in less than 10 minutes. Afterwards I went shopping, then drove home. This must be the calm before the storm of burning and blistering. I still haven't used any lotion or ointment on the treated area. It's now the weekend so that means 2 days for my skin to heal from damage that hasn't happened yet. Next week will probably be a different story.

Have a good weekend everybody.

hey kaywrite,

Just checking in with you and how the simulation went yesterday!

Paco - I jumped ahead of you on treatment by chance. I had a choice between 22 and 27th, which is I think when you are starting. I looked down at my new roadmap and told them the sooner the better - so the 22nd it is! Are you as "tatted-up" as me?

I think I am going to start a Radiation burn creams and magic elixirs thread. I'm on an old iPad with crappy wifi this week and it's agonizing scrolling for specific conversation on what feels and works best....

thank you, all who have begun, for sharing. I'll be spilling over into the April group for Rads as soon as Veeder starts it.