Fall Rads 2014

Jenny I cannot imagine having my arms above my head for an hour. While I'm not uncomfortable with my 10-15 minutes of arms above my head, I feel like they have to "pop" back in place :-). Hope it goes better today. 

Giles, I totally understand the pain /discomfort problem. I haven't had much pain along the way but I have been uncomfortable. Glad you found someone who "gets" it!   I suspect you will find you have more energy now that you're on lots fewer drugs and chemo is behind you. Your body is finally going to have a chance to heal. Coffee is your friend - drink it! ;-)  keep killing that cancer! 

I am scheduled for my rad sims on 10/9 and anticipate starting rads a week or so later.. appreciate all the advice / knowledge of those who have already been there / done that and to those I say a big congrats!!

I dont think most people realize how much cancer takes of your life /time.I was just diagnosed  Aug 1st and already feel like a lab rat with all my testing and procedures, lol !.

I expect to be "glowing" by the time rads over

Seriously, I have been reading a lot on nutrition and want to encourage others to do so... boost our immune system to properly attack these cancer cells.. and drink, drink, drink water!! Yogurt and fruit smoothies are becoming a hot commodity around my house, and they are delicious and the kids love them! Can sneak fresh kale in them and they never even know it, lol!

Good new Friday...I went to reads #26 of 33 today, and they told me I do not have to do the 5 boost sessions originally scheduled because of the complete pathological response from chemo that they found in my 2nd surgery. That means only 2 more to go! 

I did quiz down the docs ( which I am guessing they thought was a little nuts as I had already told them my armpit felt on fire). I was worried that I need the full amount & do not want to tempt fate by not doing all I can to beat this thing. They convinced me the 28 is enough, that with no cancer cells in the second surgery my scar will be ok. 

Jules NY & mommy, I have also had the Bolus for 25 sessions. I called it a giant fruit roll-up to the RT, as mine seems like it is made out of a rubbery feeling mat. They told me the same, that it is to keep the radiation closer to the surface. It is supposed to be harder on the skin when they use it. Mine is pretty red with the itchy chest & sore armpit. Now that I only have 2 left, I am less worried about my skin.

I hope everyone has a restful weekend. Enjoy the two days off. I will be relaxing with my aquaphor & aloe.

For those of you at the beginning, it does go fast. hopefully you will find it much easier than chemo. Compared to that, reads has been a breeze for me. I am tired, but have been able to return to work full-time.

For those of you getting close to the end, hang in there. It is almost here.

Recent graduates, congratulations!

I too had the bolus for 20 of my treatments. I was supposed to have it for 25 but my skin did not hold up so well.  I'm very fair skinned and almost overnight I had the worst "sunburn". I had blisters all over and some eschar under my armpit. It was so painful.  My RO decided to go to the boosts for 5 days and then go back to finish the whole breast afterwards to allow for some healing.  I had been very faithful in putting on the aquaphor everyday since rads started too. Ugh!  Anyway this week I've been using the Mepilex AG pads and ice and I am peeling like crazy but it's finally feeling better. 4 more to go!!!! I hope my skin holds up. I have worked full time throughout rads but I worked part time through chemo. I'm a NICU nurse and we get so busy this time of year so I felt like I needed to go back. It's been really hard but I just sleep lots on my days off. I also have kept my diagnosis private except for out unit manager so to keep questions at bay I needed to return as well. Congrats to those that have finished!!!! We should all be so proud of ourselves for pushing through this!!

Hi Ladies

Just finished 5/25 rads + 5 boosts. Skin looks and feels fine, a little itchy right after. Need a cottonbra.

Want to share what my doctor recommended beyond Aquaphor: Calendula (from the Garden Marigold). If that doesn't help she said go straight to pure Aloe Vera. 

Here are sources for Calendula:

Boiron makes Calendula Cream. It is considered homeopathic. I found it at the Walgreens in our hospital. Sometimes it is in First Sid section. It is non- greasy and rubs right in.

Target sells California Baby Super Sensitive Lotion which has Calendula in it.  

I read an earlier post where MomMom mentioned it. I go to Stanford Hospital in Palo Alto. They have a good reputation in Cancer care. Just in case Calendula sounds too "natural".

genny, NINE miles this weekend? Im impressed and a little jealous.  Having a hard time cranking out a mile and a half a few times a week.  You go girl!

PontiacPeggy - That would be nice if I could pick what hair came back for sure! Oh well. At least it was nice not having to shave all summer long.

Lolis - Like Peggy, rads have not gotten rid of the armpit hair for me. I just started shaving again a week ago @ 6 weeks PFC, when I noticed a few hairs had grown back.

Jaimieh - Yep, we're on the same schedule. We'll both be done with rads and get our super Hulk powers by Halloween.

HomeMom - Bummer about having to deflate your TE.  Will it be deflated completely or just a little bit? You asked if anyone else had had a mastectomy with reconstruction. I had a BMX with TEs and the skin looks ok so far. I've only had 10 sessions of radiation though.

lilyrose53 - The machines that administer the rads have to be kept cool, which is why that room is always so cold! My techs always offer a warm blanket to lay over my legs, and I usually have jeans on, so the combo is quite warm. Maybe your techs have blankets too, but just forgot to ask if you wanted one? Or if they don't have them, you could probably bring your own blanket to lay over your legs.

charusa - That's funny you asked people to sniff you! Congrats on finishing! I'm glad to hear you made it through with only minor skin issues.

Gilesmt - Sorry to hear chemo gave you blood clots in your lungs & that chemo was so hard on you with all the side effects. Hopefully, radiation will be much kinder to you. I didn't even know blood clots was a possible side effect and I was on the same Taxotere Cytoxan cocktail you were on! I hope they can dissover the clots for you quickly. As far as fatigue, my doctors tell me that radiation does not make you fatigued like chemo does. I'm surprised you didn't lose all the hair on your head, like I did. I also lost all my armpit hair and all the hair on my legs, although my arm hair stayed put completely. Well, rest up and I hope you feel better soon.

genny5775 - Wow, 60 minutes is a long time to lay still! Maybe you can find a way to distract yourself during that time to make it feel shorter. I know if I think about different things during treatment, like what I'm going to make for dinner and things I have to do later that day, it goes by faster. Good luck.

MomMom - Congrats on finishing! Now you can get back to a normal life. Woo hoo! I'm so looking forward to that.

Jagerin - Sorry to hear about the horrible skin reaction post rads. Glad to hear your dermatologist helped you out. Thanks for telling us about the Rx (Atrapro gel, Neosalus cream) that helped, in case any of us also will need it.

Well, it's late, so I'll sign off here. Wishing everyone well with their treatments this week!

MommyQ - He said he wanted to take it down to like 250-300ccs! Since I have about 750 in there now, that is quite a bit! I talked to the nurse at the PS office and she said they have had to do that before. I'm going to have the sim first to see if they even have to, but looking at it I don't think I can avoid it.  Being Italian, I don't anticipate any real issues with my skin, (not sure if that even matters) but I just thought since our skin would be stretched out more then a lumpectomy or no recon, it could be thinner and more susceptible to damage.  Thanks!

genny -  I can't run for 5 minutes let alone 4 miles! That is awesome! I would love to figure out the running thing. Of course I mentioned that to my mother and she's like " You gotta watch out for your knees when you get to a certain age!" 

Hi ladies, had my 3rd rads today, tech said no bolus today, I couldn't ask him about it because I have the breathing tube in my mouth. It all went pretty fast today, I'd say less than 30 minutes, then afterward tech told me he screwed up and I should have the bolus everytime and he would find out if any adjustments need to be done since I missed the bolus today. Ahh, well... whatever. I have a little lump about a half inch away from the incisional line from my MX on the left cancer side. I pointed it out to my RO thinking it's most likely scar tissue, she agreed but says I need to go to the BS and have it checked anyway. Got the appt for Oct 15, not too worried but it'll be in the back of my mind. Always something.. my skin is a little red but all in all ok. I am feeling a tiny bit more fatigued I think but still good.

Susuq, I've never heard of the green tea thing before, what is the purpose? I had my 3rd rad today and I'm still nervous each time for some reason. I think even more so than chemo, I don't know why. How is your twin, cancer free?

Homemom, don't know how old you are, running is not for everyone but I think walking is. I started when I was 40 and basically I find a slow pace that is comfortable. I stopped halfway thru chemo because of fatigue, I have gained 15 lbs, now just trying to get back to it very slowly. Are they taking down the one they are radiating or the other one? They did not fill my right side because they were afraid of it being in the way of the tx to the left. My left side has 450 cc and sinse I started with barely an A cup it seems huge to me. And the skin is so tight.

Would love to catch up with each of u but I'm too tired right now. Good luck to all tomorrow...sweet dreams.

Sassy,

Calendula cream is awesome stuff.  Years ago I used it on my toddler who had a bad case of infantile excema.  I will buy some to keep on hand.  I know I've seen it in the health food stores.

MommyQ,

Thanks for the tip.  They did offer me a blanket today, but I wasn't as cold today.  I was in the rads room less than ten minutes.  

Had the chance to chat with some other ladies today that were also waiting to do rads.  They are both nearing the end of their treatment.  It was great to hear my fears are normal.  We can all do this!

Wishing you all a peaceful night,  lilyrose

I had my rad sim yesterday. Got my mold done and had CTs done. Got some markings but they said I would get more next week when I come in for my first session. I have one on the middle of my upper belly and one on each side. I thought that was weird since I am radiating my breast not my tummy. Also have some small ones on my left breast. I had a melt down when the nurse was explaining all the SE I guess I was just overwhelmed a bit.  Anxious to get this started and to get my schedule. 

Is everyone doing external beam full breast? Just wondering if anyone is doing pin point. Also, what about the other forms of radiation (that I have no idea what to call it) where they insert some radioactive beads into the targeted area using a tube and leave them there for a week during which time you are quarantined.

just wanted to jump in and say that I might have giving the wrong impression, chemo was not the cause of blood clots, I know one doctor did say that, but cancer is the cause of blood clots. I was told this week by three different doctors, that any one with any cancer has a higher chance of blood clots, until I got them no doctor had ever mentioned them, they say it is rare, especially for breast cancer, cancers such as lung has a much higher rate, but it can happen. Hope that clarifies for you, I thought it was the chemo, I think the urgent care said that to me.

Anyway, I am getting stronger every day, my real problem is getting to all these doctors daily, I spent 9 hours last Wednesday, 6 hours Thursday, 4 hours Friday, 2 hours Saturday, 6 hours Monday, 1 1/2 yesterday. Because I am being treated for two separate things, at two separate places. Frustrating that I have appointments but still end up sitting for long periods of time for both radiation and lab work. I should be happy that only Monday did I have to take the bus, but if these appointments continue to be this long I am afraid drivers will not be willing to drive me anymore. The part of being blind for me that I hate is and always will be getting places, usually I just deal with it, but I waste more time waiting than most, but when you are sick it becomes even more of a problem, because I don't or didn't feel good enough to go on buses, now I feel good enough but I can't go 20 minutes in one direction into another county, then come back and go 20 minutes in the opposite direction, because it would take 6 or 7 hours out of the day, so I have my daughter this week driving, but she is getting really made because rads that is suppose to take 15 minutes, has taken more than 1 1/2 hours both days and that then makes her late for work and she does not want to drive me anymore.my ex is suppose to come out end of week, so I have to sweet talk my daughter into just two more days, but she will be furious if she loses her job because they don't know how to move people thru and over book every day. 

As a counselor, I had a class that taught you how to make sure all your appts got out in50 minutes. We are dealing with human emotions, bringing up painful pasts, hurtful relationships, frustrations and such, yet we learned when to stop pushing for questions, 30 minutes in, to start to rap it up 45 minutes in, and such so you are always ready to end the session with this one and move onto the next one. And yes when you work for the county, or you are like I was the only DD/MH counselor in the state (developmental disabled/mental health) you are booked back to back for 8 straight hours a day.  Had 40 clients a week, and had to chart on each one, I needed those 10 minutes to chart or I would never remember what happened. I just can not figure out why MO and RO are always an hour behind or in my case, 2 and 3 hours behind. Does anyone else find that this just gives you the feeling that doctors just don't care about you, they make you wait for hours because they are so much better than you are, that they don't respect you or your time, they don't care that you work, or have a life or have to take three buses to get to and from you.  Just can't help but feel that they disrespect me put themselves on a pedestal that they are better, and they can not be trusted. My new MO is great ( and this is not even the one I was suppose to go to, but I like her so much I am giving up the best MO in the state to stay with her) there was an accident and called to say we were late, when I got there I was whisked into the room, she was in within two minutes, and usually my RO is great, it is her staff that does the machines that are always late. I don't know just my feelings.

Puffin -  The Nurse Navigator said she had never seen one that low either.  I'm been smiling and doing the happy dance ever since I got that call.  First good call that has come from this entire situation.  I have my simulation on Friday.  They are going to look at my incisions and decide when I can actually start the treatments. Hopefully, it will be next week sometime.

Ccandme, I have been using Aquaphor for about a week.   Ive completed 23 of 33 rads. I'm a bit red and mostly I've felt prickly and sensitive. I gently rub it in at night only and that works for me. Then I don't have to cope with it on my clothing. Hope this helps.