December 2009 Rads Group

No my RAD's onc is starting me with the regular txts and told me I would get the boost's at the end of the treatments.  He also gave me a special wash to use or told me to use Dove for sensitive skin to bathe and a cream called Remedy by Medline, it's made of leaf oil, canola oil and olive oil.  All it really does is moisturize the skin, but I was told to start using it 3 days before txts and then to use is at least twice a day during txts with one of those times being immediately after my txt.  I was also told to wash with the soap or special wash at least 1-2 hrs before going to RADS.  I'm wondering how I'm suppose to do this if I go at 3:30 p.m. and leave work to go do it.  There is not place at work to bathe!  Have any of your docs given ya'll directions like that?  Also was told I would be weighed every week, what about any of ya'll.  I mean I already know I'm a little over weight and I'm sensitive about it.  I usually avoid going to the doc like the plague cause I hate being weighed now I'm told I will be weighed every week.  This whole process really stinks. 

Hi there December Radiation Gals!

This past Monday (Nov 30) I had the CT scan and got the three tattoos. Felt like three bee stings. Ouch!

The Rad Onc gave me a choice between 5 or 3 weeks regular treatments, with one week boost at the end either way. The medical oncologist said that the longer course was better tolerated, so I am going for that. It's just two add'l weeks. The simulation is next Tuesday and then every day at 8:15 am up until Martin Luther King Day in January.(Except for Christmas!)

I was told to use Dove for sensitive skin or Basis, Tom's of Maine deodorant, and to use lotion (aquafor, eucerin, or aveeno) three times a day - as in bring it to work and apply it. They said if I get sensitive to use a soft T shirt under a sports bra. They said nothing about corn starch or keeping dry.

They told me not to lose or gain more than 5 lbs, but they did not weigh me.

They told me to stop taking fish oil supplements because the antioxidants will protect even the cancer cells. However, I have a chinese medicine practitioner/acupuncturist and he disagrees with this. He says it's cr*p. I don't know what to think. I want to minimize the side effects, but I want the treatment to be as effective as possible. I'm doing a lot of reading. I'm leaning towards taking the antioxidants, but not sure yet. Anyone else taking antioxidants?

I'm kind of worried about how tired do you get from radiation. Is it so tired you can't go to work? 

Oh, one more thing. I had a 1mm margin (deep) and so that means that part of my right lung will also be in the radiation field. That is kind of freaking me out, too. The Rad Onc said that it is a small part of the lung which is really very large, so not to worry. (Easy for him to say... )

We're going through radiation during the dark of the year - right thru the Winter Solstice. As we're getting done the days will be getting longer again. Seems just right.

Bonnie

I have an interesting question to ask since I haven't officially started my RADs.  Are you told to hold your breath with each zap of radiation administered?  If so this is something I didn't know.  I mean... when you get an x-ray you have to hold your breath, but if you have to do it for rads txt what is the purpose behind it?  Just curious!!

Oh thanks a million Torona... I will check it out!

Started rads Dec 2.....on suppose to be state of the art "Trilogy Radiation System", suppose to have fewer se's and able to target area better...We shall see!!!!!...1st day, I was told to hold my breath from 10-20 secs for about 5 radiation rounds....I was out of there in about 7 minutes.....2nd day, was told to hold breath during treatments and there was a lull for about 3 minutes with nothing happening,  I assumed they were training a new tech that I had noticed and this time was longer....3rd day the new tech was telling the regular tech to go to lunch that she could handle mine, I was assured by regular tech and I questioned her knowledge of this new equipment and again was assured she had plenty of experience before I let the other tech go.....Well, I should have trusted my gut feelings...she did the first three radiation sessions without telling me to hold my breath (I could hear them) and I yelled from my bed "Aren't I suppose to be holding my breath?..the other tech must have heard me and said yes and had me hold my breath for a 4th, then he must have left her again because the next session again was without her telling me to hold my breath.....I yelled again "I am suppose to hold my breath!!,she replied "I don't think the mic is working, I yelled to get me out of there and that she was totally incompetent and would never be attending me again...When my Rad doc's assistant was called, she just kept apologizing to me over and over...How could this happen when I did all I could do to make sure she was qualified...My Rad doc was called to explain that the amount of extra rad was not to worry about that my alignment was still fine...I asked well am I suppose to hold my breath every time or not ..she said "YES"..I said then how hard is it for that tech to tell me this before she pushes the button...she too just kept apologizing and I was assured that only the regular techs would do my radiation..I asked and was assured this would be notated in my rad med record...I almost feel it's a sign that maybe I shouldn't even be doing radiation, might cause me more harm than good, but felt I should because I chose not to do chemo since it would only slightly decrease my recurrence from my 14% to about 12% (I will try to make this up with better nutrition and changing what I can environmentally)..sorry to go on and on but wanted to get in on this topic since we are all starting together and may learn from each other what helps and doesn't through this....Is anyone else having thiers by the Trilogy???

Hi.  I just found this group and hope to learn what to expect.

I just had my rad simulation last week and start radiation tomorrow (Monday, Dec 7th)

for a total of 33 treatments. 

The thing that scares me most right now is the people behind the machines and their level of experience.  I think I will try to be assertive and ask each time.  Will let you know how that works.

 Hope you all are enjoying your weekEnd!

I'm glad to see some ladies finally posting on here I was beginning to think that Jayne and I were the only ones coming back. LOL!  I hope all of you that have started RADs are doing well with it.  I am still awaiting the call of which day to start.  They told me they had to get my treatment plan ready and then approved the rad onc.  I am so nervous about this whole ordeal I can't even describe how I feel.  I'll probably have a panic attack or a crying breakdown on my first treatment.  I did order some of the Tom's of Maine Calendula deodorant today to use during rads even though I've seen some posts that say it's not very good and my rads onc told me no deodorant because it has aluminum in it.  This however does not and I have seen many of the ladies on here were referred to use it by their rads oncs.  I am guessing that mine just doesn't know about them, whatever the case may be I am going to try it.  Have any of you ladies tried Tom's of Maine? or what are you using?  I also ordered a very thin, light weight leisure type sports bra to wear under my clothing to work since I was told not to wear a bra at all. 

You know it's so funny... it's easy for men to tell larger breasted women to not wear bras (and at some point I may not be able to), but they haven't walked that mile in our shoes.  The bounce and pull from no support is uncomfortable and hurts especialy since my partial mast and professionally it just is not going to be acceptable in my position.  I wouldn't wish this on my worst enemy.   

{{{{Hugs}}}}

Renee

Hello to all and thanks for listening.....Today was my 4th and this one went as smooth as my first...My qualified tech had me lay on my plastic body mold, then he had me hold my breath 4 times as the machine moved around me and it was done....very easy when you have the right tech...He is so nice, he showed me the outline of my body where radiation is being put and it is very interesting...It is linear outline in colors and shows the radiated area and how much it overlaps into my heart and lung area....very minimal I have been told...hope so....He is so nice and you can tell he loves his job and makes you feel comfortable...I saw my Rad doc's assistant and asked her to notate last Fridays mess-up....The new tech will not be allowed to do any of my rads, I did not even see her today, hope it stays that way...so far I have no se's, I have been putting pure aloe (made from my plant outside) in the evenings and shower it off the next morn...I don't know if it will help but we shall see....How are all of you doing so far?..Since I do not were deoderant to rads, I am using a nice organic vanilla chai scented body lotion on my shoulders and back to offset and odor, hope it's working!!!..good luck to all and let us know what se's you are having and when they start.....

Stopping in to say Hi, Dec Rad Ladies.  I finnished 5 weeks of rads in November.  It's not bad, and the only SE I had were going into the 4th week started getting really tired, then the last week I started getting red, like a sunburn in my armpit and clavicle area.  Wish you all well during your treatment.

Hi all.

Today was Day #1 of 33.

I had to lie in the same position for about 1 hour as they did their measurements to check alignment, etc.  and one of my shoulders is sore from before diagnosis so I was soooo uncomfortable that tears wanted to stream down my face.  Besides being anxious about the experience level of the techs.  Especially after reading one of these posts.  I asked...some are out of school only about 6 months, one of my techs was out 3 years, and the most experienced is 5 years out.  I asked about the breathing thing (no need to hold breath...just breathe normally) and I asked how many fields they were shooting and if I would know when they were changing fields so I would know how close we were to done.

They said to expect about the same tomorrow because they use that gel pad thingy and have to go through the planning xrays again before they shoot.  After that they said it should be quick.

Ughh....stepping through it.

Also wondering if all this radiation is going to cause more problems because of the BRCA +...I asked about that too ...not much literature out there to say otherwise...so we proceed blindly forward as if we BRCA+ are the same as everyone else in response to the radiation.  Hoping its true!

Hope you are all doing well with your treatment.  Thanks for listening!

Mimi, I so know what you mean when we are treated as patients and not as a real breathing human being with a functioning brain (as I reminded them I was the other day when things were not right!) , you Mimi  have so much more knowledge than so many that will be treating you...some will treat us like we are just part of the machine....We have to keep asking and learning through this and not let them deviate from the original protocol as mine did and stand up and demand answers when something doesn't feel right!!!!....In my research on nutrition, I have come across a link about Radiation Therapy, the different kinds, etc...Very informative!!!!..here's website address.....(you'll have to type it in, I can't copy paste for some reason)..

www.lef.org/protocols/cancer/radiation_therapy_01.htm

I have been covering my breast with pure aloe in the evenings but during some of my research last evening...I found that in a clinical trial that aloe was no better than the placebo or the aqueous cream...That in fact in a recent trial "Calendula" (derived from the marigold flower)  was significantly better than "Biafine" in preventing mild to severe acute radiation dermatitis in breast cancer patients, as well as providing pain relief...Needless to say, I will be hunting this product down today, I think I saw some  in my vitamin store....Will let you know where I find it if anyone is interested....I think this is a great forum since we will all have different experiences in the next 30 days or so and we just might be able to help protect others with more knowledge.....

Dear Diane,



It is perfectly acceptable to start 8 weeks after surgery. Some people wait up to 6 months after surgery - in between getting chemo and allowing the bodies to heal.



Have you tried calling another radiation oncologist?

Hi Ladies,

Another Dec Raddie here... 

I just had my 2nd tx of 25.  The set up and mapping appointments were rough for me - 

I feel so negative about doing rads - and the techs were rushed and well, why not come right out and say it - Ignorant little putzers - 

I wound up seeing the patient advocate before I could go on with it.  But, it seems we resolved the issues and so off we go... 

My first Holiday card this year came, it was from a friend with a great sense of humor - I know you'll all appreciate this -

HAVE A RADIANT CHRISTMAS AND A GLOWING NEW YEAR!  

Hi everyone, hope your week is going ok.

Pill -that card is funny.. (I had someone tell me they will think of me when they see lights because Im lighting up..lol)..On the antioxidants. I was told no vitamins but I am eating and drinking berries and eating healthy food. (fruits, veggies etc) by the tons. Well not by the tons..lol. but Im eating foods that "contain" the vitamins.

I have a quesion? Does anyone feel the rads hitting them? This is the 3rd time I feel like little shocks (nothing major). But they say thats impossible. The techs look at me like Im crazy. But I even closed my eyes so I wouldnt know when the radiation was hitting me. and well I feel it, Im not imagining!

Also in case you need to know.... I found the deoderant Toms of Maine at CVS for 5.99. My rads team still didnt tell me about deoderant so I just bought it by what I read on here. Still no cream either from the rad team. They say they will watch me for burns, then give cream. No burns yet but its my 2nd week.

Im getting tired of going to the hospital daily already (the traffic is horendous and people drive terrible IE 80 MPH in a 55 zone!). Tonight they are calling for ice. The traveling and weather is stressing me more than the rads machine. I am starting to have actual panic attacks.

Take care for now and keep the faith gang!

Hello

I just finished my radiation 2 weeks ago, 6 weeks every day. Here are some tips that were given to me and it worked, i had little burning and peeling. Use cornstarch right after each treatment, then 3 or 4 times a day. Use the cream or gel given to you before each treatment and as much as you can, it really helps. I also found that wearing a bra helped me as my nipple got extremly sore after 2 weeks.  I found a bra called Barley there from Khols, its was soooo comfortable, there only $9.00, I got 2. I still wear them as they do have the support I need. I did get tired, but everyone is different, I worked everyday through my radiation without any side effects just really tired. I wish you all good luck, you are brave and you are in my thoughts and prayers.