February 2018 Starting RADIATION

Blair2

Hi everyone - today was my last Accuboost, 12 treatments down, and 23 left to do with the TrueBeam dinasaur. I asked the younger Asian physicist if they could see any of the rays zapping me on the screen, and I couldn’t understand a single word he said. (I thought, okay - this isn’t going anywhere), so that was that. I believe he said that nothing was seen, that it was calculated with the appropriate applicators. When it was all done, they gave me a nice bag that had a drinking cup, fluffy blanket, and a pink robe. They are so cool. I thought that was nice.

So far, I have not felt anything irritated. I have not had chest pain, or rib pain. Littlebee - could you have leaned hard against the platform to cause your chest to be sore? I noticed myself to be pushed into the plate area of the machine, but I haven’t gotten sore from that. Just wondering if that could be a possible cause. I could see that happening if your skin is very sensitive.

Anyway - tomorrow it’s back to the monster machine. Oh, I have noticed myself more tired afterwards. I have taken cat naps after my lunch, but then I’ll fix myself a cup of coffee to wake up. I washed my car this afternoon. But my back is in pain from doing that. My back has been an ongoing problem since chemo treatments. So I took an Advil and icing it as I text. Chemo just plain sucks

DKK

Hi ladies, Finally got started, #3 tomorrow. Could someone tell me where you found the calendula lotion.

I have looked at several stores and I can't find it. My RA recommended the Aquaphor in the evenings. Also when do you use the calendula lotion

Thank you!

Billb464

I got mine off amazon. I got a lotion and herbal calendula salve. The herbal salve is called MJ’s Herbals calendula salve and the lotion is by California bab

Billb464

I use it in the morning, after treatment with the RadiaPlex and then at bedtime. I have had 10/25 treatments, will see how it goes. The radiaPlex was a prescription they gave me.

LillyDuff

DKK: I found Calendula cream at CVS pharmacy and also Amazon.

Hello everyone! First time posting here but have been reading and taking notes right along this past February!! Thank you all for your helpful tips and for sharing your journeys!:)

I finished Rads on 02/28/18. I had an entire bolus like a body shield 23 out of 25 treatments and did the deep inspiration breath hold technique due to the treatment field being on my left side. I was laying on my back supine for treatments. The Therapists were great and called the bolus "my righteous shield." I dealt with it by having a great attitude during treatments which helped. The plan was 25/25 treatments with the bolus but my skin got so red that the Rad.Onc. pulled the plug on the bolus during the last two treatments, but at least I finished them all. Seems like those 25 treatments flew by! (Grateful for that!)

My skin was red but intact until my last day, then I blistered under my breast at the incision then peeled all over. The skin is still pink two and a half weeks out, and sore so I use everything I can like aloe vera gel (Fruit of the Earth brand at Wal-Mart.), Aquaphor, Calendula cream and had to use Silvadene cream for the blisters and peeling. The pain feels like a terrible sunburn but manageable. Glad it's over with and hope that the treatments did the trick to kill any cells that possibly remained in my skin and nodes.

Good luck to everyone and God Bless!

IzzyShepherd

lisabethM so glad you're all done. Look forward to the renewal of spring and have a wonderful summer ahead with good health. I have 13 more treatments to go. No complaints. Will be glad when I can ring that bell too!!

Diane

miranda2060

After this week I will have only 10 treatments left, of 30. RO said the side effects should get worse -- so far only some slight pinkness. Had half the treatments with a bolus, now the second half without.

I bought calendula cream from The Vitamin Shoppe online. I signed up for auto-delivery to get a discount, then was surprised when they sent me a box of FIVE tubes, then another envelope with an additional tube. Whaaaa....? Have no idea why, sent most of it back yesterday. It has a nice fragrance and probably helps the skin, though.

LillyDuff, I think the positive attitude helps. Wish my rad techs were as fun as that, but they are nice enough and very efficient, so that's good enough for me. Did you find that the rads affected your implant?

LillyDuff

Miranda2060- Today I have a post surgical follow up with the plastic surgeon. It will be interesting to see what she has to say regarding the silicone implant condition post radiation therapy. It doesn't appear that the radiation treatments with the bolus seemed to have affected it too much. I massaged the skin around the implant throughout treatment at least twice a day per the doctor's request to "keep things soft" but only up until the past two weeks because my skin was so red and sore. Applying creams often throughout the day and night was just about all I could handle. The treatment field skin is still sensitive and pink even after peeling and for what it's worth, I have not worn any type of bra since Rads.began.:)

miranda2060

Thanks for sharing, LillyDuff. I was really concerned about the implant when just starting radiation, but the plastic surgeon didn't seem too concerned, so I stopped worrying. The worst so far is that the skin swelling around it makes it feel hard and heavy, especially at night, but it improves during the weekend break. I'm also applying creams a lot and trying to massage it. I'm wearing a sports bra continuously (even to bed) at PS's behest. RO said to expect worsening of skin effects during this latter phase.

Best to all Feb. rads ladies.

LillyDuff

Miranda2060 (and anyone else if interested...)-

The plastic surgeon said I was healing normally. This was a follow up appointment only.

As far as the status of the implant goes, the manual massages during Rads. was worth the effort but to continue as expected. Also, as the skin tries to "tighten" while healing, implants tend to try to rise up in the pocket so during massage, be sure to massage in a downward motion as well to keep the implant in its place. In addition, I plan to continue to moisturize with the creams during healing.

The plastic surgeon said it's fine to go braless for me, which seems to be more comfortable right now anyway, since the radiated skin is still healing and sensitive. I plan to wear a good sports bra,however,upon returning to the gym for workouts.

Also,to note, I have Natrelle Inspira Cohesive SCM style silicone Breast Implants-240cc.(on the smaller size but I'm good with that!) My surgery was a nipple sparing/skin sparing double mastectomy. Works for me!:) Hope the above info. is helpful!!

miranda2060

LillyDuff, glad to hear you're healing well. Thank you SO MUCH for passing along the excellent advice about downward massage. I also have the Natrelle Inspira SoftTouch, 345cc., and had nipple/skin-sparing surgery.

I'm looking forward to seeing how they look once I'm healed from radiation.

Doofuscat

DKK, I found Calendula gel at a local health food store and Calendula lotion in the first aide section of Target.

My rash is still VERY itchy. I am using cortisone and Benadryl cream, along with oral antihistamines. Hoping this goes away soon!

I was given a couple of days off and will finish up next week. For you ladies that have already finished, what follow up care was recommended by your RO? Did you have follow up appointments to make sure your skin is healing etc. ? My RO is nice but hasn’t really spent any time looking at my breast since treatments began. His nurse has offered more info than the RO.

Once this is done it’s on to anti-hormones. Yippie!

LillyDuff

Doofuscat- I finished Rads. on February 28, 2018. My next scheduled follow up with the RO is April 3, 2018. After that, not sure.

Blair2

LillyiDuff & Miranda - sounds like you two are keeping yourselves in good care with your implants. If your doctors arent concerned, then you’re probably ok. Seems like they would have told you expect some stiffness or heaviness with the implants during rads. Also - it hasn’t been that long since your surgery, so I would think Any discomfort is due to healing. I heard it takes several months for the breasts to settle down and completely heal. My reduction took three months just for the tissue to relax. With an implant, your breast tissues are adjusting to a new foreign entity. It just takes time.

I finally saw the frame of beams on my Truebeam screen today. One of the rad techs showed me how they have me camerad and how the beams work within this rectangled frame area.The many numbers on another screen were positioning guides - it was interesting.

Well, I still see no redness or feel nothing so far, but it’s number 14 today. Next Wednesday is my half way mark for treatment. I’m still using Aquaphor at night. I keep wondering when the burn will begin. I just feel tired.

LillyDuff

Blair2- Wow! You are doing fantastic being at treatment #14 with no skin changes! Gosh, my poor skin was "reddish" by the 7th./8th. treatment and just got more "angry" beyond that. Maybe you'll luck out and sail right through with little to no skin issues!! Best of luck!!!:)

BTW,I'm still moisturizing during the day as well as using Aquaphor at night just in case.(16 days since final treatment)

Have a restful and healing weekend, BC warriors!!!!

miranda2060

Blair2, you're right about the settling. It definitely takes many months, with or without rads, for the implants to descend to their "rightful" position. The PS said the stiffness had to do with the skin swelling around it. But the radiation does definitely impact the healing from the surgery, especially in the underarm -- the daily reaching behind my head doesn't help, either.

It's great that you've taken an interest in the process; it helps to know why things are being done. The techs seem to assume patients aren't interested in the technical things.

I haven't had major skin changes either, but as I embark on the final 10, I am expecting more. But maybe it won't be as bad as they warned. By the end of each week, I am certainly tired.

Everyone, have a wonderful, restful weekend!

JadeShiva

I finished my final of 28 whole breast treatments today. Just 5 boosts and I'm done! I feel a bit emotional and weepy and have recognized this is normal for me whenever I finish a stage of treatment. It is like I hold everything in and then when I am done, little tears start leaking out like they've finally been given permission to show themselves. I'm pretty happy though, spontaneous tears or not.

My armpit got a lot worse this week. There is a 3"x3" patch of raw, weepy skin and boy oh boy does that area hurt sometimes. If I let it dry out or do too much arm movement it is exquisitely painful. Still, I can handle this. I'm using silvadeen on the raw areas and calendula all over.

I have a significant burn on my collarbone that surprised me. RO says it is normal and caused by radiation ricocheting off of bones. I suspect it may start breaking down sometime this weekend. It's very sensitive but not the caliber of pain my armpit is experiencing.

My fatigue is lessened this week. Naps are still amazing but not so vital to survival!

Bras? I have one soft cup, front opening bra that I can wear for awhile if the armpit isn't feeling fierce just then, but mostly I've just decided to wear snug camis and let the boobs position themselves wherever they like. If society wants to judge my unsupported 38 DD's, so be it. It's none of my business what anyone thinks.

Calendula was tough to track down in my town. Wal-Mart and Walgreens were no-go, found success at Target. I got a couple of tubes as I suspect I'm going to be lubing the boob for a few weeks yet.

Have a great weekend everyone.

Lauriette58

ok my question is DO I need rads and do they adjust it for each person.

I am E/P positve HER2 negative and oncotype was 9 HURRAY

a 2.2 CM in right breast, surgery 2/24 meet with radiation oncologist next week.

I worry that they over prescribe radiation.

What do you ladies think?

Doofuscat

Lauriette58, let me know what your RO says. I have almost the same stats as you . My oncotype was a 5. I had 15 rads with no boost. I didn't want any rads either but there are studies out there (lots of them) showing that the reoccurrence in the same breast from cells left behind near the surgery site or dragged out and deposited by accident from the biopsy needle is greatly reduced by radiation treatment. Believe me, I am still trying to convince myself this was the best decision but I didn't want to find out years down the road that this pain in the ass cancer was back and I didn't kill it when I could.

Best of luck to you. Ask lots of questions and if you aren't happy with the explanations, get a second opinion

Blair2

Lauriette - I agree with Doofuscat as far as going through radiation. Yes, the dosage varies per each person’s perticular situation. Your doctor should explain it to you so you won’t have any fears. Some people have fewer rads than others. Sometimes they give more treatments to lesson the dosage. You definitely don’t want those sneaky cancer cells left over in your breast. The newer radiation machines have improved the beams to be more direct and less threatening to your heart and lungs (or any other organs). I was petrified when I first learned I would need radiation, because I had a bypass three years ago. I was more concerned about my heart than I was my breasts, but relaxed when I learned about the newer machines that most cancer centers use now. Ask your doctor what machine he plans to use.

You and Doofuscat are so blessed not to have needed chemo! Yay!

Blair2

Jadeshiva - I know you’re excited to see the end to your treatments. The boosts will be a whole new experience. It was more comfortable than my prone position with TrueBeam, but interesting. I know if my breasts get sore, I would go without a bra. You can wear a scarf or light jacket- nobody is apt to notice. Just be comfortable

I got depressed a bit myself after my chemo, but I was mad at myself for not getting through my last treatment. Now that my back is still bothering me, I think it was the best thing I could have done. My body was telling me to stop the poisoning. I only hope it killed any cancer cells in my bloodstream.

Lauriette58

thank you all.

I know I need some, but I want them to know that I am monitoring their opinion closely and don't over do it because it is a money thing.

In America sometimes that factors into it.

lb

Doofuscat

very true about the money side of things. If you aren’t happy with their explanation and you have a research or teaching breast cancer center you can access, I would recommend getting a second opinion there. I am going to get a second opinion on my upcoming hormone therapy. I absolutely trust my MO but I want to see if maybe there is a new drug on the horizon or a clinical trial I can join

Georgia1

Hello everyone and happy day off! To answer DoofusCat's question, I had an appointment with my RO weekly during radiation, and we discussed post-treatment care at the last one. She recommended daily moisturizing at least for six months, continuing with the calendula cream until it ran out and then switching over to the moisturizer of my choice. She also recommended continuing the stretching exercises twice a day for six months.

She wanted to space out my follow-ups, so since my surgeon is seeing me in April she set her own follow-up appointment for September.

Hope that helps and feel free to PM me. I finished RADS in mid-December.

randrgirl

2 of my treatments were pushed to later due to weather. So.... I have 14 treatments left. So far my underarm incision is black and my nipple area as well. The surrounding breast pink and rubbery. It hurts but I have this nifty cream they gave me. I just keep looking ahead. The RO says the breast will return to normal over time. But it takes months sometimes. The fatigue is just creeps up so I deal with accordingly.

The positives are that my hair is starting to show signs of life (finally) 8 weeks post chemo. Eyebrow and lashes showing signs of existence. my hair is growing in different shades. Some gray some dark brown and a little red. I'm very curious to see the end results. I'm just happy to known it's coming back.

The other plus; family time. My treatments are further away so my sister (my sunshine through all of this) who went to all my chemo treatments with me set up daily rides for me. One of my nephews - Tane (he's 23 but takes time out to see to me— this kid tugss at my heart so much) takes me on Monday, my bff takes me on Tuesday and Thursday (thank God for her), Wednesday another nephew Davy (who is just the sweetest guy) and his lovely wife Jade, and on Friday that same nephew. I have 7 siblings. I'm the youngest #8 ...and I focused on my career so no kids or husband. My sisters' kids have been like my children and to have them taking care of me this way touched me more than they will ever know. My older nephew assured me he wouldn't have it any other way. So, while all of this sucks he big one, I do know I am blessed to have caring friends and family and a job that supports me as I continue to work through all this.

I try to not let every pain or feeling put me in a tailspin of worry. I'm growing to accept that this is the new normal and I've got to find a way to push forward and not let my fear of the unknown get to me. It's just so hard. Something that I'm sure many of you understand.

I'm settling into my new house nicely. Still lots of work to do but I will unpack more during spring break while I'm off from work. Mind you I have to go for treatment during my entire time off but it's late in the day allowing me the mornings to myself. So unpacking is the plan.

Okay. I didn't mean to have a feelings dump that way so forgive me. I can't really talk to anyone else without worrying them with my worries. So thank you for your ear.

Well that's all for now. Hope you all are doing well.

Hope treatment isn't too hard on all of you.

Have a great weekend!

G

Tkane10

Is anyone around the same time frame as me. 16/33. I was wondering about your fatigue levels. I am so tired, my mind wants to do so much but my body won’t let me. Feel discouraged

Joyseeker

Tkane10 I was just going to post about this. I’m on 10/21 and spent the weekend on the couch

Blair2

Yes Tkane10 - tomorrow is 15 out of 35, and I’m definitely slowing down with cat naps and fatigue lately. I found out if I take a short nap in the afternoon, and drink a cup of coffee after I wake up, I can get a bit of energy enough to get a chore done, but that wears off after a couple of hours. I guess this is what we have to put up with for a while. It’s still not as sickening as the fatigue was with chemo to me. That was total worthlessness. It’s frustrating to feel this way when there’s things you want to do, or feel you should be doing. It’s also hard trying to explain to your family or friends that you are soooo tired

sammi2006

tkane 10 Today is 16/21 for me and the fatigue has really started to kick in. Today will be my first boost with a bolus. This morning in the shower I noticed that there is an area the size of a quarter that is open right under my nipple. Do I still put my candula and aquafor on it or something else? I am going to ask that today.

INFJen

hello ladies~

today is #11/33 for me and i am already exhausted. fatigue majorly kicked in on day #9. i did not have the energy to make the drive to work so i had to call in sick. on the other hand my skin seems to be holding up pretty well which is surprising to me since i have very sensitive skin and have had bad reactions to the steri-strips and skin glue used for my biopsies and the surgical antiseptic/iodine for my lumpectomy. praying that my skin can continue to hold up for the rest of my treatment. i have only been using miaderm twice daily.