Winter 2015-16 RADS

Hello group,

I will have #11 today out of 35. I have been listening for a couple of weeks. It is reassuring to hear everyone's stories and advice. So far, I have tender tight pink skin and some fatigue. I have aches and pains too, but I think that is from surgery and chemo and recovering for the last 6 months. New side effects: dizziness, feels like a lump in my throat when I swallow, My Rad dr said that these are not SEs from RADs. Not a great bedside manner..,...fine, but I would like to not feel dizzy. Perhaps it is anxiety? How do you all relax on the table too? The fastest time for me so far has been 30 minutes. (laying down to getting up)

Wishing everyone well during their appointments today.

Tessio, make sure you're hydrated! My RO said to drink as much water or weak tea as I possibly can (which I got really good at during chemo). I'm not up to chemo levels of hydration yet, but I notice that it does make a difference.

I was dehydrated this morning and felt dizzy and weird after TX; drank 20 oz. of tea and 32 oz. of water, and I feel a lot better.

I had to see a substitute RO this morning, and the guy was a complete tool. He said disparaging things about the advice that the nurses and techs give and--get this--he said "none of the creams you put on there will make a difference," which I think we all know is complete BS. He didn't even examine me. What a chooch. Thank goodness my RO will be back in two weeks--only one more time with this doofus.

The good news is that 3/25 are in the books, and my regular RO is great.

Ok, #16 on the books today! Whoohoo! Only 10 more to go, and then boosts!

I will say this, hydration hydration, hydration.... If I don't hydrate well, I get dizzy and feel terrible, just like with chemo.

As for the lotions, I can only attest to this... I started using Miaderm a week before and I didn't get pink until the end of week three, which was Friday. On Friday night I looked at myself and realized that I was getting really pink. My mother-in-law had given me this cream called Tri-Derma, and I used it Friday night, twice a day on Saturday and Sunday. Monday morning I got up and my skin looked like it did 3 weeks ago.. no pink, no color, nothing... So, for me... it did something. The techs kept looking at it in disbelief this morning.

Anyway, everyone is different, so I guess it depends on the person....

I don't know if the creams make a difference or not....but I'm still going to use them! LOL!

I started getting pink right after the very first treatment and now that I'm three weeks in, I'm REALLY pinkish/red....but no pain, no blistering, and no peeling. I use 100% Aloe right after each treatment and tons of Aquaphor each night, before bedtime.

As of today, I am all done with the regular treatment and begin my boosts! WOOT! In the final stretch!

Update from this corner: 15 of 28 done. My skin is pink and I use the Miaderm because it soothes some of the heat in the skin.

I have nice bursts of energy and then suddenly I am drooling on my iPad. Incredible fatigue, so I nap like a two year old and then am ready to go again.

My biggest new complaint is painful, achy joints that seem to be getting worse. (I sound like an arthritis medicine commercial.) RO says that is from chemo and the MO agrees. Part of hitting chemopause like a brick wall is a sudden screeching halt to the estrogen in the body. And apparently, estrogen is joint lube. So I am creaky like a 90 year old (I am 48) until I get moving. Has anyone gotten any useful info on how to deal with this?

Sorta strange thing happened today. I seem to have pulled a muscle in my lower back or have some inflammation at my hip joint and it made a little lump and hurts, so I showed the RO. And next thing I know, I'm headed to X-ray with a prescription that says "Pt dx: BC states pain in lower back." Of course there was nothing on the xray, how could there be anything in my body after five months of chemo?

But they took it so serious, it made me feel like I'm in denial, or not really getting what my diagnosis means in the long run. I have been going through this parade of surgery/chemo/rads/ovary removal assuming that the treatment is so aggressive that I don't even have nose hair let alone cancer anymore. And to see their fear of mets kind of shocked/scared me. I don't want to be that person that thinks every little owwie is areoccurrence, but I don't want to ignore something important either (like my swollen lymph nodes right before my diagnosis that I thought were from a cold). How to balance a sunny outlook with realism?

Maximom- Also thought during boosts skin woulde be better- not so much...it got worse and even more so week after finishing it all...even the Ro said I had a bad skin reaction. That being said- the itching and heaviness were the worst things...am now 2.5 weeks out and skin is healing well...still peeling and a bit of itching but it is all good.

Marijen- think I understand how you are feeling....in your pocket! Please keep me posted on how things are going and how you are feeling! I took my phone with earphones and played my best Pandora tunes in the waiting room...and, the techs and I talked about my nervousness and that music helped- so- they were sure to play good music during my treatments. When something was going on and I thought they had forgotten...they hadn't...they would tell me we were getting started and I would say, "Music please." and it would already be playing before I got the question out. Have to ask for what you need. Again, in your pocket.

Marijen- other than a really BAD sunburn at the end of rads...I had none of what you said you did not want.;.....hoping you have same or even better results!! Warrior on with the idea that your SE's will be non existent or tolerable and I really think that can happen!

This is such a active thread and great support system. We each are stronger than we realize and we can help each other if virtual get through some of the toughest days we have to face. Stay strong everyone. I am a little pink after 5 treatments but it does not hurt or itch at all. Hope this holds up.

Tessio The fatigue does seem to stay with us. Some days better than others. I am usually done within 10 minutes so I just think about what I need to do that day. We do not have music or pretty pictures just the zap machine moving around me. Good luck you will get through it

KateB79 Love the fish. Great thing to look at each day before treatment

Jerseygirl22 Great to hear you are more than half way done. I have not heard of the lotion Tri-Derma I hope it works well. Keep us posted.

Brimton glad to hear you are doing better. I also went for day 5 treatment today. 28 more to go....

etnasgal we are using the same lotions so I hope I do not peel or blister either. My RO said mainly just using Aloe I have a cooling towel but I have not used it yet because it hasn't felt really warm to me yet.

Twnkltoz I agree the lotions are certainly helping with my scars. Your almost half way through so I hope your skin holds up well

Peabrain Sorry you have to go through this. I am with you I don't think I have allowed myself to think beyond treatment yet but I go for a physical this Friday so that should be interesting. Stay strong hugs are with you and we need to find our new normal for each of us.

Marijen We will all be there with you in spirit. You can get through this stronger than before. I seemed to be more anxious starting radiation then when I did chemo. But once you get a routine it does get easier. Let us know how it goes.

Happy Hammer Sorry you are having a skin reaction after being done with treatment. I hope you rest and heal quick

Maximom hope you are healing well

For anyone I missed stay strong, rested and hydrated and hope the week goes by uneventful.

Marijen I had my first treatment today. It really is a mind game in a way: You know it's painless; but, the outcome of each treatment is a mystery...am I going to swell, or shrink, or burn and when? Or will I be just fine? Will treatments be successful?

Being in the radiation suite is a confirmation that the cancer is real even though there are spans of time I don't even think about it because, I feel normal, I am strong, I work long hours, I exercise 7 days a week, have a full life and I feel happy; but, I have cancer and now the treatment may make me feel terrible, sick even...or going through with it may make me stronger than ever in ways that I never knew possible...

I was fine until I got on the table this morning and all I wanted to do was bolt. The technicians barely said a word to me...they were all business and oblivious to the swarm of thoughts in my head. Before I knew it and without any instruction they headed for the door and said your treatment is coming...no guidance on what I would experience and for how long. I lay there forcing myself not to get up and run, wondered if I was moving too much or breathing too deeply. First panic, next telling myself to get a grip and think happy thoughts.

Where this fear came from is beyond me; but, I realized I can control it rather than let it control me. I imagined I had left my body and was watching myself on the table as this machine moved around me. I willed myself to be calm because nothing horrible was happening to me and I was well cared for by a team of experts. I've probably had worse pain and damage to my body from an afternoon at the beach than I ever will from 33 treatments of radiation...on the contrary, radiation may add years to my life and yours...You can do this and now I know I can too. You don't need happy cheerful technicians and pretty pictures to look at. I was face down, the only pictures I had were the ones in my head and I have control over them...so do you. Tonight I can see how silly I was to allow fear to overtake me. Tomorrow I will walk in with a smile and go through the motions and know that I am safe and in control. I will sleep soundly tonight and wish that for you.

I will be thinking of you and willing you to know that you are strong and in control. When you feel alone or fearful, know that all of us here are sending positive energy your way. We have our hands on your shoulder keeping you warm and comforting you from afar.

When calculated, 33 treatments total less than 8 hours out of my life...put it into perspective...just a blip of time out of our lifetime!

Hugs to you and all who join us on this rollercoaster!

Thank you Seeking and Twinkletoes, I'll check back to read and remind myself. Bad day today, someone nearby 50 year old female got into her car and shot herself. She was separated recently from husband, heard through the grapevine. Don't have any idea who she was but it's disturbing. Her body lay on the sidewalk for hours covered with a tarp. Police were waiting for the mortician and then to hose down the street. Gruesome It was is so disturbing. I lost all motivation after that. Can't help wondering if the husband was a jerk.

I have my planning session later this afternoon and will begin radiation next week. I will have a 16 sessions. I had radiation in 2003 for cervical cancer and never had any skin problems. I hope I'm that lucky this time.

@Shopgirl - I asked my docs about eating sushi and was told I shouldn't for another six months to allow my immune system to concentrate on healing rather than fighting off any potential bugs. So that fits with what you are reading.

@Neen - My RO has not said boosts to me. I have not heard anything about it except on this forum.

i do not have any food restrictions. My nurse told me three weeks after chemo I was good, and my MO told me he doesn't restrict most foods and the nurses are overly zealous. Although I only had 8 treatments over 16 weeks, and longer treatment plans have more effect on your immunity. And I never had a problem with wbc counts.

Is anyone else having trouble with dry mouth?

Nothing like a broken radiation machine to give you confidence! I would have a hard time with that! You don't have any collateral damage yet, right?