Fall Rads 2014

ncollett

No I didnt think it would hurt I was just curious how they made mods of your boob. Lol. Didnt know if it was like foam or plaster.

PontiacPeggy

Oh, no it's not of your boobs.  The mold is foam and  to hold you in the same position every time - no squirming allowed  The tattoos and other marks are to align your boob. 

Hindsfeet

I have 8 more radiation treatments to the spine, sternum, hip and femur. I do have a breast cancer tumor in the left breast they are ignoring. They said it is too late to do anything about it. They are only targeting tumors that are more in crisis. I hate the word...too late. My oncologist says that the Herceptin/Perjeta, bone shots, and anti-hormonal shots should take care of the other tumors. My question, then why surgery for it and rads?

Because of where they are targeting the radiation food/water is foul. I am having a difficult time staying hydrated. It hurts to swallow because the nodes in question are up against my esophagus and aorta. My stomach burns like crazy. I am not allowed to do a lot of alternative therapy or anxiotants until rads is completed 9-11.

After radiation, I plan to do a lot of alternative to rebuild my immune system. Right now...I'm pretty shot...dizzy, and feeling lousy. I'm pushing forward, working and staying busy...just wished I felt better, and could eat without pain.

For the brain MRI...found a tumor in the balance area...5 skull mets. I'm having a cyber knife surgery 9-11. Dread it...pray they find no more. The brain/spine doctor said if more than 4 are found in the brain they will abort the surgery, and pretty much...bad choices...nothing good. Trusting God this won't happen.

 

maryland

Hello ladies, going to RO today, and I think for my simulation as well, they've got me scheduled for 2 hours. Just wanted to pop in and introduce myself so to speak. Ncollet (Nancy) and I met on another thread and we both have vitiligo which is a loss of pigment on certain areas of the body so we may face a bit of an extra challenge in re: to burning. I'll be back tonight and by then I should know the plan. Have a good day everyone!

PontiacPeggy

Hindsfeet, My heart goes out to you.  Many hugs and then many more.  We're all in your pocket with our arms around you.  Praying that the rads and surgery do the trick.  Is there anything they can give you so food tastes less bad?  If you could eat and stay hydrated that would have to help you feel better.

Try to stay positive that the cyber knife will take care of things.

Hope that your alternatives will help rebuild your immune system and body.  

Please keep us updated.  We're all thinking about you.

clarrn

Thanks Nancy!  I will stay away from the antioxidants then!  Just so anxious to feel a little bit normal again!

PontiacPeggy

Nancy, 1 down; 32 to go.  It was easy - just lay there.  Afterwards I met with the nurse.  I'm taking part in a study partnered by Blue Cross Blue Shield of Michigan and the University of Michigan, apparently to study the effects of radiation on the skin.  I filled out a questionnaire and they took 4 pictures of my breast.  They also drew blood for a CBC - guess they compare how you are at the beginning and end of treatment.  Wonder if the doxycycline and pepto bismal tabs I'm on for my h-pylori infection will screw it up?  

MakeLemonade

Hello all, hope everyone had a good Labor Day weekend.

4 done, 26 more to go :-)    Today I also had my weekly meeting with the RO.  My center also retakes pictures periodically to make sure everything is still lined up - had that today.  

There was a discussion further up on re excisions ... I had that too.  My first lumpectomy had some margins that were too close, so we had to go back in.  Also got my port placed at the same time ... so, for those of you that will have to have chemo, hopefully you can have a "two-fer" as well.  Second pathology showed all clear with good margins.

As my lymph nodes were involved and I was HER2 positive, there was never any question of getting chemo and then radiation.  

Got through the chemo  and radiation should be a piece of cake in comparison (I say hopefully <g>)  The nurse said the radiation fatigue is like they are giving you a rock to hold each time ... so each time you have one more rock to hold than the day before.  Easy at first, then it gets harder and harder - good analogy I thought :-)

PontiacPeggy

MakeLemonade, I'll have to keep that radiation analogy in mind.  I just started my 1 of 33 today so you're a bit further along than me.  Good luck!

SailingWind

I can now join fall rads. I had 7 treatments the first of August. I had to stop for three week because of breast infection at site of incision. Three weeks off , with two different antibiotics  and draining fluids 4 times. Started #8 today. I know it will make me very tired. Only in the past few days have I felt like doing something. Lucked out not needing chemo, 17 onco score. When rads are done Femara.

Hindfeet so sorry you have my prayers

PontiacPeggy

SailingWind, glad you are able to get back to your rads.  Will you need more than originally planned because of the 3 weeks off?  I'll be taking arimidex when I'm done.

MomMom

Hindsfeet,  You are very much in my thoughts and prayers.  I, too, send you a big, big hug!  May everything go as well for you as it possibly can.

Paula

megomendy

I just finished #5 of 30. So far, so good. Hoping for little to no side effects. Chemo was tough but manageable. I had the partial breast radiation 1 1/2 years ago for DCIs (twice a day for 5 days).

Genny, I have vitiligo also. It seems to have accelerated during chemo.

writinghelps

Another Wendy, and in OREGON!  Love the PNW!

clarrn, I've had slight issues with truncal lymphedema.  I see a PT once a week and will continue to see here throughout rads. I had my first rad today so we'll see. I did feel like i already had a little swelling. :-/

ncollett

Peggy lol I was wondering how they would make molds of boobs.  Genny hope all went well today for you. megomendy not that I am glad that you are on here or that you have vitiligo but it is nice to see others who know exactly what you may be going through. Us spotted girls will have to help each other through this and keep encouraging each other from what I understand so far. I see my RO in the morning so I will know a little more as well. We will have to compare notes.

Puffin2014

I have vitilago too, will be following the comments of you other "spotted ladies"

SailingWind

Puffin and Whoa  with all your questions on rads and prep. See if you can get an appointment with some one at the place to go over the mechanics of it all. My first appointment was very short. Took pictures  the doc showed me them. Answered all my questions. Then did three pinpoint marks on my breast. I can't find with my freckles.  It is a dry run with no rads. The next time line up the dots. It was a few days after sim. Before first Rads. They had to plan it out. Pull and tug on my gown to get it right. Put a white towel on my breast so I'm not out in the open. And just fold up edges as they need. Two or three minutes for the two foot round machine to move and do its thing. No molds. Just on a table with a small pillow over hard head placement thing. Triangle foam under knees to help you not move. I see Doc every Tues. after my treatment. Can ask to see her any other day. May have to wait if she is with another person. She told me to put Aloe on a couple times a day and to rub the area like you would do for a self exam to help scare tissue from forming. Do half an hour of exercise a day. I swim, yoga, weight machines at the gym. Builds up bones.  I had a lumpectomy left breast. No chemo so no SE from that when starting Rads.  I am on day 9 after stopping on 7 for three weeks because of breast infection. 

yogamama

Hello all!  I'm a newbie, having just completed 12 weeks of Taxol and 4 rounds of FAC.  On to the next phase!  Today, I met my RO and also signed up for a study to use topical lotion to prevent radiation burn (double-blind, so no one knows at my center if I have the placebo or the stuff they are testing).  Anyone else on this study?

SailingWind

PontiacPeggy. I was able to start where I left off. They even saved my time slot for me. 

Every Rad center is different. So newbies before you start. Ask for info and detail . May have to make a special appointment. A good place will make time for you to do this.

PontiacPeggy

SailingWind, that's great that you could pick up where you left off.  What rotten timing to have an infection in the middle of your rads.  Was it caused by the rads?

After 2 days of rads, I'm pleased with my center and all the staff.  Like the RO too.  It's nice to be doing the next step in getting rid of all the BC!

Yogamama, you're far from a newbie even if you haven't had rads before.  I'm also in a study but it's not the same as yours.  Mine is studying the effects of radiation on the skin of the breast.  They took pictures before radiation and then another batch after I'm done.  Nice that they are doing studies and I'm glad to participate and help those who have to follow me.

Puffin2014

Sailing: My MO said I'd be meeting with my RO about 2 weeks after my Sep 18 chemo, and starting rads the following week. Just getting anxious I guess to move onto the last stage of this process. As I've been following this Fall Rad group have been making my list of questions for him.

jhodro

Peggy: I'm in a a study too. I have to fill out a pain/condition survey once a week as well to see how things are progressing in addition to those first appt pics. They'll take another set of pictures at the end as well.

I've completed 10 of 33 as of today. I feel like it's slow progress, but progress all the same. As far as side effects go, I was swollen and 'heavy' after the first few treatments. As of today, I'm pretty visibly pink. I have super pale skin, so it's pretty visible. I also have some tightness in my scar from the part of the lumpectomy where they removed the lymph nodes under my arm. I did PT a while back so I am trying to remember to do the stretches so it doesn't get worse.

The only thing I've used is the gel thing that a nurse gave me that is stored in the fridge and helps to alleviate the nipple tenderness. It's effective, but can only be worn for 4 hours. Otherwise, I've kept it dry, only used unscented dove soap, drinking as much water as I can and eating lots of protein. 

Good luck to everyone starting out. Hoping for no SEs for everyone!!!

ncollett

Hello all everyone. I have my Sim Sept 29 as long as my re-excision is clean next week. My RO was full of all kinds of good (not) news today. When explaining possible SE he said with the vitiligo I most likely will burn how bad he really isn't sure but we will be keeping an eye on things. He uses Aquaphor so I will get that. He also said that since we will be radiating left side that my upper lung will be scared just nothing they can do about that but should be manageable, also mentioned possible rib pain or fx, possible heart zap although he did say they have come a long way with that and should be able to miss it but still a possibility since it is on the left, since I am a DD he is worried about skin breakdown underneath and mentioned saline packs or something like that, decreased appetite, fatigue etc.. that's enough good news for the day. ENT says I need to see a concussion specialist to help with headaches, balance issues and seizures. I didn't know there was even such a thing. Just what I needed one more doctor, but hey if he can help go for it.

PontiacPeggy

Jhodro, that sounds like a worthwhile study to be in.  I've only had 2 treatments and nothing's shown up.  My RO seems to think I'll sail through so I'm holding that thought.  You're a third done tomorrow - celebrate that!  I don't have pale skin maybe that will be a positive.  I always drink a lot (pee a  lot too ) and I'm using Dove unscented - which was my soap of choice until I discovered some olive oil based soaps at our farmer's market.  I love the cinnamon and clove scent.  it seems to be very gentle.  But I'll follow orders.

Nancy, that's crappy that your vitiligo will impact your rad SE  I didn't get any of those scary messages that you did about the heart and lungs though he did mention avoiding them.  I'm an A on a good day, maybe I'll avoid the breakdown.  A concussion specialist for your headaches?  That's different.  And what's one more doc in the pantheon we all see?  That's what insurance is for.  

Take care and have a good evening everyone!

SailingWind

Infection not due to rads. Just how it happens some time

PontiacPeggy

SailingWind, it didn't seem likely to me that the rads would cause an infection but what do I know?  Stuff DOES happen.  Glad it's gone!!

MommyQ

I had my simulation today. Went very quickly and painlessly. I laid on the platform and they inflated something under me to hold me in place. Went through the CT scanner and they marked me in 2 places left and right, and 3 places down the middle. Done in 30 minutes. They'll call when the planning is done to schedule my radiation appointments, within a week. Looking forward to getting rads done so I can move on to the next phase...reconstruction exchange surgery 6 months later! Can't wait to get these uncomfortable TEs out and replaced with something softer.

Hindsfeet: So sorry you are suffering so much. I hope it gets better for you soon. Hang in there and stay positive.

Best wishes to all. Have a good evening.

Generation3

Hindsfeet,

Hope everything goes well for you on 9/11. Big hugs from me and everyone else here. My thoughts and prayers are with you.

Keep us updated. And try to stay hydrated, sometimes just a cold milkshake will go down when nothing else will. Wendy

Psalm34-4

I got my path report back today from second lumpectomy, and so happy to report clear margins, thank the Lord for answered prayer!

I also got my oncotype back, it's 21 so I am not sure how the chemo possibility will pan out, but I do know now for certain that I will be getting radiation.. learning a lot already from you ladies. Interesting to me too about the studies some of you are participating in. I am with Nancy in I thought the molds were of boobs, was gonna say Nancy & I would prob. want to keep ours as a momento, lol.. but as usual, I had that one wrong too!! Of course now that I have heard it explained, it makes sense. I see my MO and RO on 9/22 and will get the rest of this plan figured out.. nice to have couple of weeks to just be "normal" and not worry about any more results!

makelemonade.. i love the analogy you were given, I'm gonna remember that one. Hope these are "little" rocks I get each  tx.     ; )

hindsfeet, I am so sorry to hear your report and my heart is burdened for you. Please know you are in my prayers and will be there continually. You just remember none of this has taken God by suprise, He is still on the throne, and He will carry you through. We just have to trust Him. I know I have had to remind myself numerous times that all God asks of us is to have faith of a mustard seed, and those are little seeds! But it is easier, we think, for us to worry and try to carry a load that truly only He can carry. One of my most comforting verses is Jeremiah 32:27.. "Behold, I am the Lord, the God of all flesh: is there any thing too hard for me?"    Please keep us updated on you.

hugs & prayers

Hindsfeet

Psalm 34:4, that too is my favorite verse and often quote. I am depending on God to carry me through this uncertain time. I am also praying God will empower me to honor Him no matter what. I know He will give me wisdom. I am not scared about dying. I just so want to take care of things before I go. I  would like to live, God willing. I am not rolling over and dying. Every day is a gift, and I'm soaking it all in. Sometimes, I look at the nurses and doctors. They have this sad look in their eyes, like, sorry. I hate that look. They think I'm dying or not long to live. God does work miracles...He is the God of all flesh and nothing is too difficult for Him. Right now...living is what I am doing. Just hate radiation treatment cause my esophagus is swollen and it is hard to eat or drink. It too shall pass...