Winter 2015-16 RADS

hi ladies!

I start rads tomorrow and i have not been nervous until tonight. I think it's just the unexpected-ness of it all. I dont know how it will go, what they will do, etc.

my hubby is coming with me for moral support, which i am so thankful for. I really want all of this to be over.

I am actually quite scared of them missing the mark and radiating my heart. I know they do this everyday and they are experts, but just so scared.

Kim

SeekingSere, I know what you mean about the lack of certainty that we are cancer free. I have three reasons to doubt. First my own PET scan done before my Masectomy and before any treatments strongly indicated cancer in three of four lymph systems. I went through one abdominal biopsy and a laproscopic procedure that showed no cancer, but they were so sure about it being metastatic. They couldn't really explain why it was showing a false positive -scary. Second and saddest, my sister in law was diagnosed and treated with cervical cancer after chemo and rads declared cancer free! Less than 3 month later the cancer was everywhere. She started back on an aggressive chemo regimen for the last six months of her life and died less than a month ago. Finally there is my mother who had breast cancer at 50 MX and 1 yr of chemo that nearly killed her, tomaxifen for 10 years and they declared her cancer free,but no. After 23 years it came back in the other breast - more chemo morerads.

That is why I believe they do not know what test will be accurate, or what treatment successful. I think we just have to be our own monitors.

Cubbie2015, I wanted to let you know that I asked about the darkening of the freckles/moles on the radiation side. My RO told me that they sometimes fall off after the treatments. It seems to fry them up. But he said that it was not a worry for me. Mine were all very light moles before, some of which you couldn't see. Now they are more visible and disgusting, but if they fall off I will be happy.

4 more treatment of rads and now four weeks of PT to fix the shoulder. Hopefully I will be done by end of March!,

The real good news is we have just planned an Alaskan cruise for September!!!! That is a nice goal to have.

Etnas - OMG i want one of those cookies. They are so cute!

You may want to ask about Calendula at your RO Office I got some for free, which helped becuase it's not cheap

It seems we are all being told to just hydrate. I sure wish there was something that helped the skin heal!

Marijen - if your nausea does not subside make a stink about it! I see you are having whole breast - my RO finally listened and is rewriting the code because he said the nausea was definitely from stray rads hitting my stomach (and in my case, esophagus!). I was glad I got aggressive about reporting my SE's but it took me 4 weeks!!! Do not wait that long!! It is a SE and he said it should not be happening! We all hate to complain or make a stink and think we can handle this, but this is a time to get selfish and take the initiative to speak up.

All my RO says to use is coconut oil and aquaphor. I keep searching for something else but it all just hydrates. The cabbage leaves help!

My chest/shoulder area is bad. I'd post a picture but I don't want to upset anyone! It stings now and then....ugh! The other insult to injury is that this weekend, 6 weeks after last Taxol, I lost all eyebrows and most lashes. I'm a mess....no hair regrowth and now no brows or lashes and a burnt chest! I keep waiting to start the climb out of this abyss....it's gotta be soon!

Hang in there ladies!! You are all my lifeline!

Good Monday morning all. Friday afternoon, my skin was pretty uncomfortable and it is so difficult to get any comfort at work. Aquaphor is almost impossible to use without getting it all over my clothing and they frown upon working topless here so... I went home early.

I'm feeling much better today and I only have ONE MORE TO GO!!! Last rad is tomorrow at 8am. I also just scheduled my "deportation" for 2/25 and I think I'll feel like a normal person once again.

For those just beginning or just beginning to feel the heat, what worked best for me was aquaphor mixed with prescription lidacaine. I keep them both in the refrigerator so when applied they are very cooling. I didn't try the cabbage but I did get a cooling cloth (Walmart for @ $8) and I keep it moist in it's container in the fridge as well. SO very soothing when my skin feels like it's emitting more heat than the sun. I've been wearing sports bras or camis because regular bras are just too uncomfortable.

Hello, all! I'm so pleased to have had this three day break from rads! I'm starting to wonder if electing to do this "prone" position was a smart choice...it seems odd to be so pink from the first two treatments. I've been taking a daily multivitamin for women over 50 and hope that's okay. I find it hard to believe that any antioxidant in a vitamin pill could compete with the power and intensity of a radiation beam. Anyway, be well and keep strong

Welcome, Durham! Hope all goes well tomorrow!~

mdoc I'm with you on your note to Seeking - I'm not buying it. Two nodes, two positive, no more scans until you get symptoms. It's not right. What about tumor markers. What about the CTC circulating tumor cells blood test? I hope you get some resolution of your questions. They are valid.

Marijen and mdoc, my MO put it to me like this: false positives happen all the time and they scare the hell out of people. The last thing she wants is to scare more people so, even if/when insurance covers scans, she's not a fan. She also explained that catching mets early (god forbid any of us gets them at all) doesn't change the prognosis; she operates off of things that are clinically significant (symptoms).

I resisted this for a good, long while, but then I realized that she was right. Honestly, I've got to operate under the assumption that I won't have a recurrence (or mets); statistics are on my (and your) side.

One thing that having cancer taught me, after years and years of worrying about getting cancer: worrying about something doesn't change the likelihood that a thing will happen. It just sucks the joy out of the moments spent worrying.

That's easier said than done--and I realize this, and I'm not immune to bad, anxious days. But overall, it's kind of a que sera, sera kind of situation, at least for me. I'm becoming more and more committed to just living each day as it happens, if that makes sense. (Very hard for a formerly-type-A, overachieving gal like me, but worth trying!)

Sending hugs.

Hi everyone! Well, I had my simulation today and I think everything went fine, for the most part. The techs were fine, not super warm but nice enough. But I was in a position where the bar just below the headrest was pushing very painfully into the base of my skull. At about the 45 minute mark, it was so painful and they made sure to tell me not to move or else they would have to start over from scratch. I know the rest of the actual treatments will be much shorter, but that was really annoying.

Then, they handed me my schedule on the way out. I had requested a time slot anytime in the morning--I am totally flexible in the mornings--and they honored that except for the first treatment tomorrow, which they scheduled for 4:45, the WORST possible time. It is right in the middle of my son's hockey practice, which I am FINALLY feeling up to taking him to after 5 months of arranging carpools, and right in the middle of a high school tour tomorrow that I REALLY wanted to go to for my middle son. So she handed me the schedule and told me I couldn't change anything and I just burst into tears. I was so happy about being able to finally do stuff with my kids that seeing that 4:45 time slot on the worst day possible just pushed me over the edge. The tech was able to change it in the end, but not before I spent 10 minutes bawling like a little kid in the waiting room. At least it was the empty gowned waiting room and not the main waiting room.

So I guess I am feeling more emotional about this whole part of the process than I thought I was. At least the RO was friendly...we like her very much.

And tomorrow it's labs, radiation, appt with the MO and then herceptin/perjeta...another 8am-2pm day at the hospital...sigh.

Okay, I'm done kvetching now. Thanks for listening, everyone. :-)

Hi everyone
I wish I could repost for everyone. I too worry about reoccurrence. I read all the stats, worry about what I'm eating, think about the other nodes. My tumor was deep near the chest wall. They took out lymph nodes under my arm. That's way across from where the tumor was. Why would the cells go to those lymph nodes rather than the closer ones they didn't look at? But I REALLY TRY to think positive. I have that tool.
My nose was itching today. That was a challenge! But I let the music take me away.
Mdoc -- You are strong. I think I would be freaking out if I had to wait. I cannot believe that they didn't know you were there and not scheduled REALLY come on!
After my freak out and running out I was the one who apologized. UGH
Durham girl-- hang in there it's not as long. Suggestions visual something happy or like me
death to cancer cells.
I also say a good thought for all of you going through this with me.

awww Durham sorry you had a crappy day...you need to tell them that time absolutely does not work. Maybe someone will be ending a morning time soon and you can take it. Talk to them tomorrow I can't imagine they can't work with you. They work for you not other way around. Don't let them push you into a time no one wants.

Brimton my tumor was sitting on my chest wall..I think/know my Dr's are beating themselves up for not doing rads the first time around. Just remember you are all doing all you can do...that's all we can do to avoid recurrence . Hang in there it does get easier

Diane

HappyHammer, I just made all my info public. I thought it was already, so I apologize for that. I am triple positive. The plan is to continue Herceptin/Perjeta every three weeks until October, assuming my echocardiograms are normal. The RO also mentioned today that she would cut the Perjeta first if she feels that it is interfering with the radiation in any way--I guess Perjeta is so new that they just don't have enough data on it yet to know how it works with everything else.

The only other thing that my public info below doesn't reflect is that my MO actually stopped the carboplatin after 3 rounds because of some unwanted side effects (major GI issues and some minor hearing loss and tinnitus). I haven't decided on further surgery yet, but I will most likely have a prophylactic mx on the left side and leave it at that for a while (i.e. no recon) and see how I feel. I'm having trouble envisioning multiple surgeries for reconstruction at this point. I just really want to get back to my life and doing stuff with my kids.

DiDel...I guess my message might have been confusing. All time slots EXCEPT tomorrow are in the morning. It was just that one day, tomorrow, that I had several kids' activities happening at once that they tried to schedule me in for an afternoon. Sorry for the confusion! And yes, I will definitely push to change appointment around if I need to in order to be at school events for my kids, etc.

LMN-YAY! YAY! YAY! for finishing rads!!! Have you tried the cabbage leaves for the red ho and itch? I didn't until near the end and in retrospect...wish I had tried them sooner. Rest and enjoy NOT having rads every day...hugs!

hi ladies!

Pretty uneventful first day of rads and very interesting. Techs are great and friendly, music is playing and i have palm trees to look at! My husband said it's like laying on the beach!

On a different topic - i saw mdoc's note about her hair and wondering about everyone else's hair (or lack thereof). What stage is it at how long after your chemo ended (if you had chemo that is). I am 4 weeks PFC, never actually lost my buzz cut, and now it's about a quarter of an inch long and pure white. Just wondering how long others took to grow, and get their colour back. I still dont have leghair growth or armpit growth but have kept most of my eyelashes, and brows have thinned substantially.

Kim