Winter 2013-2014 Rads

Jmfrankel

hi fellow winter rads.  Sorry I have not kept up with any posts.  I have been hospitalized since Thursday and will be in here at a minimum until Monday.  My mo said even once I am better I will have to wait another 2 weeks for my blood counts to get up before finishing my last 6 rads.  The infectious disease doctor still isn't sure what's causing my fevers over 103.  At first I thought it was the flu.  Got swabbed for flu, came back negative, but was prescribed tamiflu since I am high risk.  Within 4 hours I broke out in hives and doctors said I am apparently allergic to tamiflu. That was er visit 1 on Wednesday night.  Thursday my fevers were 102-104 at home and uncontrollable which led to er visit 2 and being hospitalized. They suspected bacterial in nature because of high temps and started me on 4 different Iv antibiotics (luckily I still have my port) but are now relooking at it being viral and are doing a recheck of flu with a more accurate test.  A lot of info and I don't want this to get too long.

Moral of story is that we are just as susceptible during rads as chemo but in different ways.  For me it is a loss of platelets.  I wish my mo had warned me to stay away from infectious areas like work, malls etc.  I didn't know what having low platelets meant in terms of risk. I'll keep you posted when they figure this mess out.

- Joan

TB90

Red, I do not have time to write much right now but I hate how people beat themselves up for smoking.  My mom died of lung cancer and I know that she felt like she deserved it.  She would not complain at all.  Smoking is so very addictive and how are you supposed to quit during one of the most stressful times of your life??  I could go on and on about the politics of tobacco and how much $$ the gvnt has made off it and blah blah blah.   Just know Red that you deserve to do just as well as anyone else and believe that you are doing your best to beat this damn cancer.  Later, if you can quit, you will.  In the meantime, your drs will take it into consideration and according to all I have researched lately, the odds of anyone receiving rads having serious complications is very very rare. 

SallyS70

JM, thinking of you and sending you (((hugs))).  

MinusTwo

Red & Peaches:  No preaching from me.  I smoked for 40 years & quitting was the hardest thing I ever did.  We do have a great support group on BCO if you want to take a look (link below) - no pressure!!!  Some of us have finally made it after numerous tries.  Others are still thinking about it or gearing up to try.  I was telling my 30 year old niece tonight that when I was pregnant w/my son in 1970, the OB said - by all means don't try to quit while you're pregnant - you'll gain too much weight.  Interesting how things change.

So - good luck with Rads & concentrate on your first priority.

http://community.breastcancer.org/forum/6/topic/72...

JMFrankel - so sorry to hear about your hospitalization.  Hope you can get the bugs knocked out.

TB90

JM:  I missed your post.  So sorry you are having complications from the rads.  You are now in the right place to receive good care and it sounds as if they are covering all possibilities with four different meds.  Thoughts are with you.

Lilyluv

Thanks for the encouragement Candi07...good to hear that you got through it OK!  

Red I'm not part of a clinical trial.  I think more doctors in the U.S. are now accepting the 4wk. protocol for early stage bc.   My onc does the boosts, but it seems like some docs don't do them.  Guess it depends on what the situation is.  Sounds like there's still some debate on that one.

TeamKim

Red -- no one here will judge you.  Just do what you need to in order to get through this hell... One day at a time.

Joan -- I am so sorry to hear about your complications.  My RO sent me for a CBC after 3 weeks of rads -- I guess that's why.  My levels were in normal range, but still lower than normal -- nothing like the numbers I had during chemo though!  I am getting the dried blood in my nose like I had during chemo -- so my white count might be getting a little low.  What do they give you to help with the platelet count?  Keep us posted, and know we are in your pockets.  ((((Hugs))))

rosecal954

Thought I would check-in. I am post-rads a little over 3 weeks.  I met with my MO this week.  She looked at my rash which started about a week and a half after radiation.  She does not think it is a radiation rash, but thinks it is a fungal rash of some kind.  I'm applying anti-fungal cream to see if that helps.  The little red bumps are less red, but still there and sometimes itches a bit but not too bad. She wants to see me back in 2 weeks if it is not better. I think it's definitely from the radiation.  It's all over my breast right where I received the radiation.  Heat seems to make it worse. As far as fatigue, it's better, I get a little tired after exercising. My oncologist went over with me my recurrence rates with some computer models and reports regarding additional therapy benefits.  With my Stage 1, 11 mm. tumor, my recurrence rate comes to 18% in 10 years. With hormone therapy the risk deceases to 9%, however, my oncologist thinks my chance of recurrence is smaller than that. She left it entirely up to me as to whether or not to take hormone therapy, Tamoxifen. I have decided to not take it for now. She really wants to me eat healthy -- organic, non-horomone, food as well as take Vitamin D and exercise, especially weight bearing since I have moderate osteopenia. I left knowing she was very comfortable with my decision and I am at peace with it.  I know these are only statistics of other women and I did not make this decision lightIy. I have follow-ups with a MRI and mammogram in May.  I feel so relieved this part is over and getting back to normal or a "new" normal. Wishing everyone a smooth journey.

Jmfrankel

thanks everyone for your support.  I made it through the night without a fever!  Which is a huge step.  I actually got some sleep but  not bothering to go back to sleep at 4 because they come with my meds at 5. 

Team Kim, there is no magic shot like neulasta etc. to bring your platelets back up that I am aware of.  This will be my discussion with my mo when she gets back from her trip.  In the meantime I will discuss with the nurses and doctors here.  I will also be seeing my pt ASAP since I now have lymphadema in my left arm from all the fluids the pumped into me.  I literally can not raise my left arm to pick up a glass of water.  They just weighed me and I have added 20 lbs of water weight since coming into the hospital.  Begged for lowest dose of prednisone and will ask if I can get off of it today .

Another lesson learned... Don't wait until there is a problem to get fitted for a sleeve.

TeamKim

JM -- I am so sorry to hear the LE is getting you too!  PT is the way to go with that -- hope they can get it under control ASAP,  Ugh!  This journey!  Hang in there, kiddo!

RedReading

Thanks to everyone who has been so kind. Smoking is a very tough addiction, quitting is easy - I've done it at least a dozen times. Lol. It's staying quit that is the hard part. My non-smoking counselor says that every quit is a successful quit. In her opinion the important part is to identify what triggered you to make you start again. Stress? A party with other smoking people? Building a fence? (that was my most recent trigger - everyone smoked, it was hot, we stopped for frequent breaks and everyone lit up - eventually so did I) She also said 24 hours is a successful quit. So maybe I can start with little quits. 

Jm, sorry for all you are going through right now. Hope it gets better for you very soon.

jpteacher1

Eight more treatments to go!!!!  I have two more whole breast radiations and then six boosts.  Everything was going pretty well until last Friday.  I have begun having sensitivity to my nipple area.  I don't see any blisters, but sure don't want anything to cause a delay in treatment.  I have been using the gel that my radiation oncologist gave me at the beginning of treatment.  Are there any other suggestions for the nipple area?  When the boosts begin, are you more susceptible to burning?  I can't wait to finish treatment.  It takes me 45 minutes to get to the site every day during this awful winter weather.

rosecal954

Joan, Get better soon.  I am sorry you are not feeling well and going through this.  I will pray you are back to good health very soon. 

Red:  Thinking of you, take every moment - moment by moment. 

Holeinone

Joan,

Sorry you are in the hospital & having all these problems. I finished rads on Feb. 7. My white blood count is very low, but Mo & PCP do not seem concerned so I guess it's normal.

Hope you get to go home SOON ! 

MinusTwo

TeamKim - when my platelets & RBC went so low during chemo, the MO said the treatment was blood transfusion.  Taking iron pills, eating steak & spinach, etc. would be good but not boost the numbers much.  They regularly schedule a transfusion when the hemoglobin is below 8.  I got to 7 twice but both times were during the holidays when the transfusion center was closed & by the time they were open again I had decided to wait for the next blood test.

Good to know I should still be watching blood count through rads.  I didn't put it together that this fun treatment can zap your blood as well as the targeted areas.

JM - sorry about the LE.  Hope you can get to a qualified LE therapist soon.

positivenegative

peaches been very tired 1/2 way through  rads.   had a bad muga scan...now have a cardiologist on my team and more meds to take.  darned cardiotoxicity.  we got blasted with multiple snow storms.

RedReading

Juniper - you did 15+5? How'd it go? Are you fair? Did you burn? So many questions!

Ellen - 15+6 - I haven't heard of that before. Wow to healing so well they can't find the incision on the CT. Kudos to your BS!

Peaches - thanks for the encouragement, it is on my plan to quit, just not quite yet. I want to get this behind me first without the added stress of quitting smoking. I know you get it.

Mimi - that's crazy, the whole thing with the biopsy? What are the chances? My buddy had a dense mass that they biopsied, turned out to be a cyst but it was so large they decided to take it anyway. Opened her up and it was gone. They had punctured it with the biopsy and her body reabsorbed it.

Joan - Hope you're feeling better. Super that your fever is down. Totally sorry about the LE - hopefully your PT can help you with it. I was unaware of a potential platelet problem with rads, thanks for filling me in. Better tell my RO cuz I'm borderline all the time. Although he probably knows.

TB90 - thanks for the support and the info about the radiation to the lungs. I appreciate it.

Minus Two - I added that link to my favourites. Thanks.

Kim - Thanks for being in our pockets Kim. Twirl - all clean.

Rosecal - I respect your decision, but couldn't make the same. I am at 28%, with the Tamoxifen down to 14%, so I have to say yes to it. But I totally get why you decided no.

JP - hope this next little while goes by quickly because I sure wouldn't want to be doing a 45 minute drive in this weather.

Hope everyone has a lovely evening.

MrsDarcy

Hi Red - Sorry it took me awhile to get back to you.  I started a new job a week after rads ended and on the weekends I am pretty wiped.  Not an excuse not to answer you though and so here I am

Actually my memory of rads wasn't accurate.  I had 16 regular and 4 boosts.  The 16th treatment was hell.  I got super red and had swelling.  I was prescribed creams and luckily it was the last day of full breast rads.   The boosts were easy and I had zero reaction from them.  I am fair skinned but I think I did really well minus that last day from hell !

I am now tanned but its slowly fading a little. The skin is healing well and I am back to wearing a bra with underwire.  I ended rads on Jan 24. 

The boosts are a breeze - I actually could have slept through them lol !!   

ellenkc

Red and others -- an explanation from my RO of why the 15 regular plus 6 boosts. I've also seen several questions about why one doctor includes boosts and others don't (aside from different cancers).

My RO explained that the Canadian study only examined the regular doses of radiation. For that limited purpose, the study was very well done and quite persuasive that the somewhat higher dose for a shorter period was just as effective as the 5 week protocol.

However, the Canadian study simply did not include the boosts.

Other research looked at boosts, but only looked at boosts after the then-usual 5 weeks of regular doses. That research was also well done, and VERY persuasive as it showed the boosts having a dramatic impact on recurrence (I think he said something like 40-50% reduction)

So that leaves the question: Do the boosts in fact help when combined with the 3 week protocol? Apparently there is a study underway to test that, but until those results are available, the whole field just doesn't know.

The RO said he wanted to err on the side of caution and give the boosts. I had to agree that as much as I want this ordeal to end, it was worth another 6 days. I mean, how much is that against the rest of my life?

Hope this helps. -- Ellen

Miminiemi

Yes it is crazy they got the whole tumor during biopsy.  My surgeon said she has only seen that one other time in twelve years.  I hope that's why no boosts and not just lack of caution.  Hope the 16 th rad isn't as bad as it was for Junipergirl.

Rlsteadman

Last night was the first night that it was hard to sleep because of rads. I finished 25 whole breast and 2 boosts. Under my arm is deep red with some small blisters. I sleep with my arm up under my pillow on my side. This stretched the underarm and it was painful. It also hurt when I rolled to the other side.  Finally around 2 am I took a pain pill left over from surgery and fell asleep.  I hope that it's better tonight. Only have 3 boosts left. Suppose to snow in the morning so hubby will stay home to snow blow and get me there. Can't wait until Wednesday.

SallyS70

Rl, I have three more boosts left also.  My rad center is closed tomorrow, so I will finish on Thursday.  The area under my right breast is red with blisters.  Although I have a prescription cream, the area hurts and feels pulled when I roll onto my left side.  Since I like to sleep on my left side, falling asleep on my back is hard.

It's good that your DH can get you to rads through the snow.

ROAREUS

Hello....

Not sure if I should sign up with the winter RAD group or the spring RAD group.  I start on 2/24/14.  I will sign up for both.... 

RedReading

Hi Roareus, I start on Feb 19th and winter will not end forever, so I'm here! I start 3 days before you. It'll be nice to have more company.

checkers

TeamKim,

You seem to be reacting to rads almost the same way I am. I have #23 today (last whole breast) and start boosts tomorrow (7). Up until last Friday I had discomfort but no pain. But after Friday's treatment I have pain in certain spots. Almost like I'm bruised inside. I'm now taking 600 mg of ibuprofen before bed which helps a lot as does the Domeboro soak The wine Saturday night helped, too  

My brown underarm is starting to peel in a couple of places, exactly like my nurse predicted and my tumor scar area is about 3 shades pinker than the rest of my breast. Wonder what is going to happen once the boosts start!

I've heard so much about fatigue but so far I'm only a little more tired in the evening. Also, during chemo I only had a couple of days after each round where I was fatigued. I must have great stamina because I've surprised everyone (including myself) that I've continued to work full time during all this. 

We're supposed to get another 3-5 inches of snow this afternoon just around the time I have to travel to Rads. YUCK! I'm so tired of winter! I just want to go someplace warm!

checkers

Snow is coming down fast and furious and rads aren't for another 2 hours! It's a 25 min drive to start with so I'm going to have to give myself an extra 20 min to make sure I get there in time.  I'm almost done so I don't want to miss any days!!!

RedReading

Have a safe drive Checkers, even if you have to leave 45 mins early. ((((hugs)))) I'll be thinking about you. Let us know when you are home safe and sound.

checkers

Snow let up at the perfect time for me to get to and from rads safely and started again with a vengeance when I got back. They keep upping the snow total but it could be worse. We haven't gotten hit quite as hard as some parts of the country.

 I've decided want skis for my car so I can pretend I'm in the Olympics. I think I'd win the Gold.

Mayanne

Hi Everyone,

I just had my 7th (of 33) radiation treatment today.  No fatigue, yet, but that's not unusual, I guess.  I do have a little nipple soreness, but I have my weekly meeting with the nurse and doctor tomorrow (as well as the weigh in), so I can ask about that then.  Hopefully, I can get to the appointment as snow is supposed to hit our area in late morning.  My appointment is at 9:45 and it's an easy ride if the weather isn't bad.

RedReading

You take care driving Mayanne. Like I told Checkers, better safe and sound. This weather sucks!!!

Checkers, glad you made it safely home girl! Skis on cars, interesting concept! I'd have to have cross country skis on my car tho, there's only 1 hill between here and rads or here and work, so downhill skis wouldn't work. lol.