Winter RADS 2012 Club...Please come join the fun!

fgm

Cypher-I have the same feelings.  I totally agree with lifeonitside.  The Rad techs are nice enough but nothing like the chemo nurses.  The techs just want you to get in and out as quickly as possible because there is always someone else waiting for the one machine.  The only time when they were really nice was when someone had not entered my data into the computer and I had to wait an hour.    Anyway, I'm sure they are doing the best they can but they could be a little more caring.

Question-my MO wanted me to start arimidex when I began radiation. But my RO told me to wait until I was 4 weeks into rads.  Anyone else have this experience? Thanks

Warm hugs to everyone

sonson

cypher/allurbaddays-My entire body aches from chemo still.  I'm four weeks PFC and I think it was the taxotere that did me in.  It's my muscles that ache so much.  I feel like an old woman.  When I'm sleeping in bed just rolling over in bed I can feel every muscle ache as I roll over and going up stairs is such a hard thing right now.  I keep hoping that it will magically go away one day, but so far it's still here.  I keep trying to exercise or at least do what I can to stay active, but it's not easy right now and normally I'm a really active person.

Lifeonitsside-that is good news that it's only of medium concern at this point.  Still sending good vibes your way and will continue to do so.

Cowpower- so the LE specialist said that my arm is 12% larger than the other one so we are going to start with bandages to get it smaller then on to the sleeve and also a type of massage and they also are going to set me up with some PT because I have some cording in my arm as well.  The LE specialist thought it would be best to be proactive about the swelling instead of letting it get even bigger.  I agree.  I start after Christmas.

fgm- I was told to start the Tamoxifen when I started radiation.  So far so good, but it's only been four days...  I'm not sure about arimidex though.  I was talking to another woman who was waiting on her radiation treatment with me and she had the same MO as me and he wanted her to wait to take the arimidex after radiation.  I was wondering why she was waiting and yet I wasn't waiting...I guess it has something to do with tamoxifen vs. arimidex.  All you can do is ask both doctors.

cowpower

Sonson, that's exactly what I am doing ( nice for me to get a second opinion) I have been bandaged for two weeks and it is a true pain in the butt, but it is working. I am down 1 cm or so each time I get measured. Bandaging does make cooking a bit of a challenge, I bought a box of extra large exam gloves and cut the fingers off so I can chop, etc. You will also need the largest dishwashing gloves you can locate. I think the bandages are the way they make you beg to wear the sleeve you didn't want in the first place My range of motion has really increased since I started and my tendons across my chest are getting much more normal. What is cording?

cowpower

Sonson, I forgot to add that the massage is very gentle and pleasant. When they called it "manual lymph drainage" at my center, I got a bit taken aback picturing some sort of milking machine or something horribly uncomfortable, but they lie you down with a hot blanket and just lightly brush their hands over your skin. We all have definitely seen worse!

cvmarilyn

I agree - that rads is icky - and it does have to do with the environment there. The people are OK - I know one tech from a long time ago - and my impression of her hasn't changed 

I think we are widgets to them - not people - with this scary diagnosis - how to tell them????

Going in today for #4 - thank you for the info on the achiness - there is sooo much that no one tells you - kind of like after you have a baby - and your body does all this weird stuff that I never read or heard about.

It is really emontional. Monday when I went in to see the oncologist - I just atrted crying - I was sick of being in Oncology and tired of people in my life that create drama where there isn't any. UGH!!!!!

Much love to you all-

M

sonson

Cowpower-good to know the massage is pleasant.  The way she described it to me sounded rather pleasant...I'm all for something pleasant in my life at this point!  Although the bandages don't sound like a picnic to me!  There is a cord of tissue underneath the skin that runs from your armpit all the way down to your thumb that can get extremely tight due to lympedema and they call that cording when it tightens up.  It can also obviously restrict your movement and cause severe pain.  I can't say that I'm in severe pain, but when I move it in a certain way I can feel a certain pull all the way down to my thumb so they are going to make that better with PT. 

cypher

terri, congrats again on being done.  Re the tamox, maybe you should get a second opinion rather than arguing with your MO?  He might be right, but he might not be.  Also you could always take it and see how it affects you -- you might have bad SEs from it but then again you might not.  How high are your ER/PRs?  I'm really high in both (as well as being her2+) so there's not really any way around it, except possibly an ooph....

heidismom

Terri, I just posted on fall rads to Virginia regarding hormone therapy.   It was determined that I am fully into menopause so I will be taking Arimidex starting 1/1 rather than Tamoxifen.   Had the same conversation with my MO,  don't think my family will be able to handle me with any more hot flashes than I already have, and sleep is a nightmare.  Working SO hard to lose weight, (tho not over Xmas holiday!) and also more dryness, joint pain. Ugh.   My MO and RO both said very seriously that it does seem like overkill for my microscopic invasive cancer, and of course it's my body, my choice, but that 53 is young, and a recurrence is so much more difficult to treat, much more aggressive.  And they'd both say yes to it whether it was for their wife, mother, sister or themselves. MO said give it a few months for any SE to settle down, and if I decide it's ruining my life after that, we'll talk.   Fair enough I guess, so I'll give it a go.  But first to enjoy holidays including sugar, dammit.   Then I'll do everything possible to stay strong and healthy. 

kittykoma05

I had my second radiation treatment today.  I have had a headache since the first treatment and it got a lot worse after today's treatment.  Is anybody else experiencing headaches due to radiation?  I also have a lot of tightness on my neck.  I was told today that I will be needing 28 treatments instead of 26

cypher

Thanks everyone for the comments about your joint pain etc.  I'm not as worried about that per se as my elevated phospohorus levels.  Does anyone else have those? 

0000

Hi all,

Today was #4 of 16 rad treatments. So far, I am doing well. Kinda feel weird that I have not had a side effect...but it is still early. 

Sonson : You know we are using the same group of MOs. Well, I am taking arimidex while taking rads. So I have no idea about why one doc says to wait and others say that it is fine to take the hormonal therapy during rads. I seem to be the odd one...borderline oncotype 19 but no chemo. A grade 3 tumor but shorter radiation days. Actually, it is almost the same amount of radiation, just given over a shorter time.

I am trying my best to lose weight and eat healthy. This beast had better leave my body and NOT come back as a #IV. Argh!!

~Jenifer 

elimar86861

fgm,  Here's what BCO has to say about your question:

Arimidex during radiation?

Tamoxifen during radiation?

momtopiglet

Kitty- I get migraines, and I saw my regular neurologist right after starting rads.  He said sometimes headaches can increase during rads, just due to stress, tension, fatigue and the fact that it's kind of another 'insult' to your body.  But my headaches haven't been continuous or anything....maybe talk with your doctor??

Incidentally, though, I'm down to my last 7 tx, and I just started to get mild nausea and upset stomach in the last two days.  WTH?  Anyone else having this problem?

cowpower

Kitty,, I did have headaches at first, then they went away. I am convinced that the main reason was positional- I was lying there with my jaw clenched, my shoulders stiff, and a deathgrip on the handbar. Once I realized it and forced myself to relax things got much better. I even took an ativan before a couple of treatments to help my body relax, but I dont need them anymore.



Sonson, the cording sounds lousy, but I am sure those pts will straighten you out soon. They certainly dont put up with any nonsense. I think my chest tendons have stretched a foot since they started working me over:) You will get used to the bandaging, did they indicate how long? I was told to expect 2-4 weeks.



Momtopiglet, YES! I have been having digestive issues, somewhat like I did on taxotere. I was thinking that the chemo had left me lactose intolerant, or that I could no longer get my dunkindonuts coffee on the way to rads.. I also just finished 25/33.Sorry to hear you are having issues also, but nice to hear I am not alone or nuts, ok, maybe nuts.

jennsmc

I'm on #11 of 35 now.  I had fatigue twice, once the first week and once the second week.  You would think it would come on as the treatments progressed, but mine has come and gone.  Yesterday I also had a morning of nausea and diarhea.  Otherwise, its just a pink, swollen, sore breast.

Today the tech really annoyed me.  My center has two radiation rooms.  I've mostly used the room on the right.  However, the first time I had to use the room on the left, I noticed a lot more pink in my breast the next morning.  I told the tech this and she said it wasn't the machine.  Both are set for the same amount of radiation.  Ok, then yesterday I had to use the room on the left again.  Today I woke up with an angry red breast.  Today they were leading me into the left room again.  I asked if it was possible for me to use the room on the right instead.  She let me, but definitely acted like she was put out about it.  She went on about how there is absolutely no difference between the machines.  Grrrr!  My boob, not yours!  I know for a fact that the left one is faster than the right one.  Therefore, they are not EXACTLY the same...

Thanks for letting me rant!  I've been getting a lot more annoyed by the techs.

Lifeonitsside

I went in today - 7 of 33 - and there was a male tech fixingn something with the computer. I stood there for a moment to see if he was going to leave. But the ladies just took me to the table and got me set up. I was a little put out because they didn't even acknowledge that he was there. Usually, everyone has introduced themselves, even if they're not treating me. I've had nurses come into a room to pick up something and they even introduced themselves. He left pretty quickly and very politely kept his eyes averted but it still bugged me a bit.



I'm trying arnica every couple of days to see if it helps keep the burning down. So far, very little redness but I'm trying to do everything to keep it that way. Arnica helped a great deal with some previous injuries I've had so I figured it can't hurt.



I also have had a bit of nausea at the end of my treatment. Not much and it's usually gone by the time I get home.

Outdamnedspot

I had the student setting me up again today.  I told her I wasn't comfortable yesterday and by the end of today's tx, my lower back was starting to ache.  And it still is.  I have arthritis there and have been managing well up until these last two days.  

Maybe she is off tomorrow...

I too, have been having some nausea...but when I am around food.  That's a tough one as I own a restaurant.  Maybe it will be the weight loss trick I have been looking for!!

Shachar

Hello ladies!  I begin RADS treatment next Tuesday, December 18th.  Woohoo!  Today I went for a CT and they marked all over my chest with black markers.  I have a few black X's on there as well and I'm supposed to leave it on during treatment, but it smudges if I touch it with my finger.  I'm hesitant to take a bath for fear it will all wash off completely but there's no way I'm going 5 days without bathing! 

I am trying not to freak out thinking about RADS and will go back to see what everybody else had been going through so far.  I am not sure how many treatments I will be having yet, but the RO did tell the tech today that I would be having boosts.  I will have four days next week and four days the following (closed for Christmas), and then four days the following week (closed for new years), so it may be a little longer to reach the end.

I volunteered to be in their Aloe Vera study, which gives me a steady stream of free aloe during treatment.  Jackpot!  I also got the 8:30 AM slot, perfect.   I didn't get a mold, which I have read about on here, and nobody mentioned anything about tattoos either.  I sure hope they plan on explaining to me before Tuesday what the game plan is.  I also have silicone implants with alloderm, so hoping it holds up well during this process.  Hello to everyone and glad to have some company through this new adventure!   (waving)

PixieNel

Hi all,

Has anybody from this thread who was given an answer by his doctor that "you may or may not undergo radiation therapy"?

Yes because of 1/2 nodes. One of the 2 nodes was found out to have 1 mm. cancer cell and higher rate of non-recurrence.

No because i have undergone surgery (TRam Flap) and systemic therapy (chemo, herceptin and tamox) might have remove the cancer cells. the size of the excised tumour is 3.5 cm. (recommended size: 5 cm). some side effects are permanent.

I am more inclined to the " No" side. But before that, I need to gather inputs. 

Need your help.

THank you in advance. 

By the way, no axillary dissection was done. Only sentinel node biopsy.

cypher

Pixie, did you have a SNB or axillary?  There was a useful discussion on this a week or two back on the triple positive thread, you might look there. 

PixieNel

@CYpher

Sentinel Node Biopsy only.

Axillary Dissection was ruled out because of the tram flap + vascular augmentation.

what happened was the sentinel node biopsy done after mastectomy showed 0/2 nodes so they proceeded with the reconstruction. After reconstruction, the nodes was subjected to deep paraffin test. It yielded 1/2 + nodes.

So the tumour board on whether to do axillary dissection or not. But because of the vascular augmentation on the right breast, they decided not too and go on with the systemic therapies. Radiation is optional also.

cypher

Well I would definitely look at the triple positive board-- a woman named LeeA had a similar situation, I think.  Well, we her2+ women have aggressive cancers....  What are the down sides to doing radiation on your nodes?  I'm node negative -- as far as we know -- so I don't know much about that.  You've been through SO much treatment already.  On the other hand, I'd hate for you to run a risk after all you've done to put this thing to bed.  You should look LeeA and pm her, I think she'd be helpful.

Andrea623

Three days out from my last treatment, and woke up feeling dizzy and headachy. My lower armpit is very sore. I hope these are normal side effects! I'm staying home from work, will watch Netflix, and Mozart's Die Zauberflote on DVD.



Oh, and to top it off, we had a dog fight this morning! We're watching my son's huge Newfie while he's on an "End of the World" cruise, and he and my young malamute aren't getting along. *sigh*

PixieNel

thanks Cypher

cowpower

Shachar, welcome aboard! Here's hoping your rads journey is smooth. I am going today for 26/33 and had my marking session yesterday for my boosts which will be my last 5 treatments. I am covered in sharpie also, and think I may have already screwed up some of the marks with aquaphor petroleum jelly. The techs at my center, who are wonderful ladies, told me it is no biggie, they will touch up the marks as needed. All in all, I dont think rads has been bad. The first couple days it was a bit hard, as the treatment itself is solitary, unlike chemo, where there are people around. I got used to it quickly however and now I just chill- I dont even do my mental math or trivia games anymore! BTW Although having the days off on a couple weeks does stretch things out a bit, it also may be easier on your skin. I had a couple 4 day weeks and my skin is just now getting crispy. Hope this helps.

Loneskier

5 of 35 will be done today.  I was really tired as of yesterday.  I decided to take today off from work and I am already feeling better.  It is going to be a long 6 weeks.  I am getting used to going after work every day.  Today I go at 2:15 and then two days off. Yeah!

allurbaddayswillend

I feel kind of queasy after radiation too, for a couple hours. I didn't think that was supposed to be a side effect?

cider8

Pixie, I was in the gray area for rads: mastectomy with clean margins, 1 positive node from full axillary dissection, aggressive chemo and tamoxifen. I chose NO with my ROs blessing. One year later, after a recon revision (I had DIEP) my PS sent some tissue to pathology and a tiny amount of IDC was found. My docs determined it was left over. it did not have good blood flow so that is why the chemo and tamoxifen did not kill it. So now I'm having rads.



I would chose no rads again if I had to do it over. There are risks with rads and I would not go through it for simply precautionary reasons. All but one of my treatments I have done my doctors told me definitively yes, I needed to do it. It was my choice to have my left mastectomy; that side had atypia lobular hyperplasia, not cancer, so it didn't have to be removed. All of our treatments do or can have permanent side effects. I personally didn't want to do them if I didn't have to (with the exception of the profylactic mx).



I hope that helps a little with your decision.

PixieNel

@cider8, thank you so much. Ive been reading patients who have not undergone radio as a choice from the forum and their inputs are also valuable. 

As of now, Im weighing the pros and cons. So far, the cons have outnumbered the pros. im still seeking advice from medics outside the forum. Its truly exasperating.

Dianarose

Has anyone had issues with their shoulder during rads? I am not sure if it is frozen shoulder or what. It hurts to move in certain ways. It hurt to drive the car today. I haven't had any injuries. I noticed a few days ago it hurt to take my shirt off and then got worse yesterday.

19 to go. Can't wait to be done.

Congrats to those who have finished.