August 2019 Radiation Starts

MountainMia

Hi Laura. Big congratulations and super tender hugs for you!! I'll be with you next week! I had to nod my head at this: "just tired of being mangled, poisoned and fried." Absolutely!

No tamoxifen, AI, or Herceptin for me with triple negative. I'll be done with "mandatory" treatment. I've just realized I might be a candidate for oncoplastic breast reduction on my healthy breast, so will talk to the BS (who also does oncoplasty) about that. Like most women, I didn't have exactly same-sized breasts in the first place, but they were reasonably close. Now post lumpectomy and radiation, there is a lot more visible difference. I am not sure what I'll do, but I do want to learn more.

Oh, today was 15 of 20 for me. Tomorrow is my last regular, and boosts begin Thursday.

MountainMia

Here's the honest truth: so far radiation has been pretty easy. My hospital makes part of it simple with the parking. It's free valet parking, so I can leave my car and enter the building a few feet away. Radiation clinic is just downstairs from the doorway. I get my parking validation as I breeze by the reception desk. I sit for anywhere between 1 minute and about 10 minutes, normally, waiting my turn. I visit with some lovely people who are kind and interesting and have much sorrier stories than mine. Then I'm treated efficiently and compassionately, and I get my car and leave.

BUT. My left shoulder aches. My chest is often mildly uncomfortable. All my joints and parts feel a bit more tender. Sometimes I feel mildly feverish -- which fortunately doesn't last long. And I'm having a lot more frequent breathlessness when doing anything physical like walking up the stairs or walking a bit fast for part of a block.

Tomorrow is #17 of 20, my first boost. Then I'll see the RO and ask her about being out of breath. Is it a bit of chest inflammation? I don't know.

Anyone here experiencing any of that?

Kamboka

MountainMia: You only have a few more left. Sounds like you are coping as well as possible. You seem to have a great attitude about the whole thing.

I start in the next few weeks. When I had my consult this week, the RO told me I'd have to hold my breath for 20-30 seconds. I told him I might not be able to do this since after my bout with pneumonia, I have episodes of SOB and oxygen de-saturation. He said there would be alternatives if I can't do it. I've been practicing at home but so far I haven't gotten past 22 seconds. My email friend was practicing in solidarity with me. She can do 45. Are you doing the breath-holding or something else?

MountainMia

Kamboka, yes, my radiation is left-sided, so I do breath-holding. If you practice, you'll improve. Did the RO explain to you why they want you to do that, if possible?

Kamboka

MountainMia,

Yes, he did explain the importance of the breath holding to hopefully mitigate any heart and lung damage. He mentioned that if I couldn't do it, we would try without. I worry that I'll run out of breath at 20 seconds and then move as I gasp for breath, thus really causing damage. I'll keep practicing but chemo/pneumonia/pulmonary overload did a number on my lungs/breathing. I'll see when I do my simulation on the 23rd.

CreatureKeeper

Hello everyone,

I started rads on August 12th and got to ring the bell today .. September 12th

I had one setback on the schedule 3 weeks ago. My gallbladder acted up and I needed emergency surgery. Missed two days of rads, spent two weeks at home recovering and now feeling ok.

MountainMia

Yay, CreatureKeeper!! Congratulations on finishing the rads! And you did it the hard way, with a detour through emergency! I'm glad you're feeling okay now.

What is next for you? Is that the end of your active treatment?

GiddyupGirl

Hey staying positive - congrats you are finished now. I still use the Aveeno for eczema lotion for the itching found that it really helps. Slather on lots. Best of luck

stayingpositive2019

Thanks for the tip GiddyupGirl, I will definitely get that.

Funny thing, well not really. For most of my treatments, the techs were men. Near the end of treatment when they asked how I was I would reply overall fine but my skin is not so fine. On Monday their response was "well that is to be expected" and left it there. On my last treatment day (Wednesday), the machine that I am usually booked to was overbooked so they called me over to a different machine which happened to have two women working. Once again commented on my overall wellness, just that my skin under my arm was having a tough time. She said ok, she would look at it. She gave me new instructions which were to basically stop using the cream I was using on the broken skin and to switch to Polysporin with antibiotic and she said I could use Cortisone sparingly for itch. She actually gave me some printouts and I was thinking wow, come on men, you have pre-printed sheets how easy would it have been to give me that info. Sheesh!

It has been 2 days since my last treatment and my skin continues to break down, more peeling and is very sore. Looking forward to getting past the hump (takes two weeks I hear...), just want to start healing!

Hope everyone has a good weekend!

Laura

loiswb

Going for #21 in a few minutes, (30 total). Just this week my skin is showing some wear and tear. Red around clavicle and under arm and some red dots under breast that I found this morning. I get 25 regular and 5 boosts. so far it has been fairly uneventful, but we'll see. So ready to be done with everything . (except the Tamoxifen). Hope everyone's skin and energy can hang in there till we finish!

MountainMia

This morning I had my last radiation treatment. My last treatment. I am just so tired and weepy. Maybe a nap will help.

EDITED to add, yes, a nap helped. Feeling a bit better now. Tomorrow should be even brighter.

Paloma1211

Congratulations, MountainMia!! I have TWO more to go, and I am gearing up for a massive cry. I can’t wait for this part to be over.

Since I’ve started the boosts, and the doc prescribed Silvadine for me, my skin is starting to heal. It was rough there for a little while.

Good luck this week, ladies, we can do this!!

Xxxxxxxxxxxxxxx

Mountainmia: Congrats! You did it, and I think you were a super friendly hostess for this thread.

Paloma: 2 more and then... Hawai! Am I right? Drop your tears on some "Margaritas"😜🏖🍹

loiswb

Congrats to those finishing up!! Go ahead and cry! You so deserve it! I have 2 regular and 5 boosts to go! Finish line in sight!

jenni0102

I finished up my 28 regular treatments on Monday and started my 5 boosts on Tuesday. I will be finished with those on Monday. I will be so glad. My collarbone is the worse looking, but my armpit area and the area under my breast feel the worse. My back at the exit area is slightly red and a bit sore but nothing major. I am just really sick of going everyday after work (and before work on Fridays). The girls and one guy that do the treatments are super nice but my radiation oncologists irritates me. She blames every side effect that I have had on either me or the surgeon that did my lumpectomy, like they could not be, in any way, the radiation's fault. I know that they are, just from doing my own research, but she seems to get offended if I blame them on the radiation. In her opinion, the burns are because of irritation of my bra or hair, the pains and soreness are because of the way my surgeon did my surgery, and the internal burning sensation is also because of the surgeon, so I am really just ready to be done having to discuss any of it with her. I see my oncologist today before my treatment. I assume it is to discuss my next step which is Tamoxifen and Lupron and some sort of every 6 month infusion for my bones??? Not really sure about that last one. He added it to my chart after I saw him last time so he has not talked to me about it. Anyone have any advice or info on any of those treatments? The side effects of Tamoxifen and Lupron really scare but I am willing to try them. I've heard some horror stories about them and then I have heard some say they were not bad at all. Like most things, they depend on each individual, so I will give them a whirl.

Just cannot wait to finish this! Most of us here are nearing the end of treatments, so to you all, CONGRATS! We all know that it was not an easy thing to get through!!! Good job to you all!!!

Xxxxxxxxxxxxxxx

Jenni0102: I had to smile when reading about your RO... Mine is the same. She saw me once and she asked me about any SE, I told her that I had burning in the esophagus and nausea ... she said "it can't be" ( ok, I must have imagined it, please don't get upset ... LOL)

You are finishing this, I'm glad for you! I wish you luck with next step: tamox. ❤

SparkleGirl2018

I just finished #16 of 33. I am so ready to be done as well! Every day is exhausting.

Jenni0102 - my collar bone has been very sensitive as well and started with a rash. But my RO has been great. He gave me steroid cream right away for the rash. And he never acts like it is my fault or something else other than the radiation. I am glad you are almost done and won't have to deal with her anymore! I will be on Tamoxifen as well and am nervous about the side affects. I have not heard anything about an infusion for bones. Let us know what you find out.

Yndorian1 - I have had burning in my esophagus and nausea as well. I also have felt like I have a lump in my throat and it is difficult to swallow. My RO moved my radiation site over a little away from my neck but does not want to move it any further. He said he is making sure to hit the lymph nodes in that area. I have to eat very soft food now. I hope it does not get any worse

I hope everyone has a good week with minimal side effects

flashlight

My only advice is to take a break and let yourself heal some before you start a new treatment/medication. There are some helpful post about Tamoxifen and supplements. Good luck to you all!!!

loiswb

Hi everyone! I have been too busy to post. I finished my 25 regular treatments Thursday and had Boost #1 of 5 yesterday so will finish on Thursday!! My collarbone and underarm are red and just yesterday and today I have itching. Could be way worse but am glad I'm on the tail end. Fatigue also worse this week.My boost area does not include the actual nipple itself so I'm hoping that helps. My RO is wonderful, but like those mentioned, when I said I had a headache after the first few treatments he seemed skeptical they might be related. SInce then, I have wondered if maybe I was hyperventilating a little bit (?). But regardless, it was related to the treatment process somehow if not to the radiation per se. I too will have tamoxifen next and not sure what else if anything. The bone infusion, I suspect, is to help prevent osteoporosis, since the lack of hormones that the tamoxifen causes will increase risk for that too. (But of course check with your doctor)

MountainMia

Hi lois. Good to hear you are coming to the end of rads soon! Also that your SE aren't terrible, for your skin at least. The fatigue, though...

I feel more tired every day, and my skin is getting redder toward and under my arm. A small spot has opened on my skin, just like the top layer was taken off. It's only about 1/4" so not big but certainly is sensitive.

I guess if that's the worst problem, not too bad.

Paloma1211

Hi friends! I finished 30/30 on Thursday. Wow, what an emotional day. I rang that bell with gusto and cried tears of happiness. Congratulations to all of the finishers!!

My skin is slowly recovering. The spot at the collar bone is almost fully healed. It’s red and itchy, but no longer weeping. The spot under my arm is taking a little longer. I suspect it is because I’m having a hard time keeping it covered. It is getting better though.

I’ll be continuing with my infusions, changing over from Herceptin to kadcyla (when I return from Hawaii! In late October). And I’ll start Tamoxifen, I assume, sometime soon.

Fight on, warriors!

loiswb

Yay Paloma!!! Congrats! I am a week behind you it looks like. I am not HER+ though so I think nothing more except tamoxifen/hormone therapy. Hope your skin continues to improve!!

MountainMia

Hooray Paloma! So glad to know you're done with all but recovery!

My raw spot under my arm is bigger now, about half-dollar sized. It isn't raw through and through, but is very delicate and sensitive. I keep trying to think, if that's the worst of it, it's okay. It will heal pretty soon. But I think it will get some worse before it gets better. I'm glad I don't need to go anywhere tomorrow, so I don't need to put a bra on.

jenni0102

Finished yesterday! It was a very emotional experience. I did not expect that but I am so happy to be done. Starting Tamoxifen soon. Maybe monthly injections and once every 6 month infusions to suppress my ovaries and to prevent cancer from spreading to my bones. I say maybe because if they cost what they are thinking they will, I will not be getting them. The cost of all of this (even with insurance) is obsurd!

MountainMia

YAY jenni!! Yes, I get your emotions! The first couple of days after were pretty tough for me. Granted, a good friend of mine died the same day, of cancer, so there was that. But I've felt pretty good emotionally since then, and surprisingly optimistic.

Sorry you are having troubles with insurance. I've been surprised that my insurance has paid everything with no dispute since April, since I met my out of pocket max. I feel very very fortunate that way.

loiswb

Yay on finishing Jenn!! I am right behind you with 3 more to go. Sorry about the raw skin Mountain Mia. Slow progress......also so sorry about the loss of your friend---sort of bad timing. The mother of my daughter's classmate recently died of brain cancer after a long battle. Her service is on a weekday during the week so I am going to be working (since I've had to take so much time off for my treatments/appointments. However, if I didn't have that "excuse" I'm not sure I would be able to attend. Just too close to home.

loiswb

I finished up my last 3 treatments without any issue. The boosts are quicker than the regular ones.

MountainMia

Yay lois! Does that mean you are done, done?

I didn't find the boosts were quicker. Seemed like about the same to me. I'm doing fine now 10 days since the last one. My skin has the one spot that isn't getting worse, might be getting better now. I have some fatigue. But doing okay.

loiswb

I'm done done except for the hormones which will be tamoxifen to start with. I was essentially perimenopausal at the start of this, so I have to take the tamoxifen first and then I understood that they will "transition" me to one of the other hormone blockers. I have a few areas at the edge of my boost area that have sort of scraped off the top layer, but so far doesn't hurt much. THe clavicle and shoulder are the worst and seem like they are going to peel but haven't so far. My center gave me a certificate for completing treatment.

MountainMia

Congratulations to you, lois! I hope your skin heals quickly.