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Starting Radiation December 2020 group

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Comments

  • Poppy_90
    Poppy_90 Member Posts: 84

    two for one, I agree with Moth. Better safe than sorry. I would at minimum call your RO. Someone is on call this weekend. And let us know how you are doing?

  • twoforonespecial
    twoforonespecial Member Posts: 35

    HI Everyone,

    I decided on Friday evening to wait a day to see if my strange ache got better before calling. Today it has been barely noticeable, so I'm just going to wait until I go in on Monday. It was very strange, but it seems to be gone now, so who knows...

    At least for once I'll have something to talk to the RO about - I see him every Monday and usually have nothing to say.

    Thanks for the advice. If it turns out to be anything I'll let you all know.

    Rachel

  • Poppy_90
    Poppy_90 Member Posts: 84

    Rachel,

    Thanks for posting. I am happy to read you are feeling better. Is this your last week?

  • phoebe0610
    phoebe0610 Member Posts: 2

    Hi, I am new to this group and wanted to introduce myself. I start radiation today the whole set-up. I have no idea what to expect .

    I am slightly anxious. I am glad to get involved and have support through this, what to expect and suggestions for any soreness to the skin. I need 5 weeks of radiation and then hormone therapy. My journey began November 18th, partial mastectomy , still healing . I am back to exercise and hope to feel good during radiation. Working with a dietitian for breast health.

    Happy new year to everyone and praying for a better 2021

    Joy

  • phoebe0610
    phoebe0610 Member Posts: 2

    Another question not related to radiation. I stopped the bio-identical as soon as I found out about breast cancer. HAs any one experienced migraines and I am having lots of hot flashes. dr.'s suggested some different meds but hesitant to take anything. One being Effexor and another oxyburtin? Thanks

  • moth
    moth Member Posts: 3,293

    hi phoebe! Welcome!
    Are you having mapping today or have you already done it and are starting radiation? If you're doing the actual rads, it will be way faster than the mapping appointment was. Some of us experience very little skin soreness - I was just dry and itchy both times during rads.

    Lots of people experience migraines and hot flashes on hormone therapy. Do you know if you're going on tamoxifen or an AI? I'd suggest reading those threads as they will cover a lot of the side effects. The hormone therapy will probably make things worse for a bit. I get hot flashes but I'm the odd person who doesn't really care. I just layer down and up all day long.

    Also if you fill out the dx and treatment sections on your profile and then make them public in the settings, it will show up at the bottom of your posts and we can better understand your dx and treatments.

  • moth
    moth Member Posts: 3,293

    friends, it's my last rads today! A bit bummed they scheduled it for 4:50pm - would have been nice to be done earlier in the day but ultimately doesn't matter. I'm almost done! Going to putter around the house and try to get some laundry done. We all tried to do as little as possible during the hols - played games, read, walked, watched netflix and did no chores so there's a bit of chaos here now!

    My birthday was yesterday - so many things to celebrate!

    Mama2FourKiddos - forgot your Netflix questions. Dh hasn't watched The Blacklist (I'm all caught up) so I made him binge it & re-watched with him. He got up to beginning of Season 4. I'm also watching Lucifer. Dd has just started and is highly recommending Crash Landing on You which is a KPop drama but is apparently also very funny because she's been giggling like crazy. Just can't knit while watching because of the subtitles....

  • twoforonespecial
    twoforonespecial Member Posts: 35

    Hi Everyone,

    So tomorrow is my last day! I'm right behind Moth... Congrats to you! And happy birthday as well (I will say that ending rads is a better birthday present than a BC diagnosis like I had this year).

    I asked the RO about the strange pain I had over the holidays. He doesn't think it's related directly to radiation. He said it sounded like a musculoskeletal issue, perhaps from lying there everyday with my arms up over my head. Said it's nothing to worry about, and it's gone already anyhow.

    Welcome Phoebe to our club that no one wants to be a member of. The only advice I have for you (which you will likely get from a Dr.) is if you end up on Effexor, you need to be really, really careful when you go off it again. It is hard to get off of without some unpleasant issues. When I went off of it years ago I cut back as gradually as I could, which ultimately included opening up individual capsules and counting out the tiny little beads (I don't know what the right word is for those). I was able to cut back in tiny increments that way.

    Hope everyone else is doing OK these days.

    take care,

    Rachel

  • mama2fourkiddos
    mama2fourkiddos Member Posts: 48

    moth - I hate to think you have to give up on your dreams…but maybe not all of them, like you mentioned. I think the dog hobbies are a good way to continue doing what you love in life that fits with your treatment and how you're feeling at any given time. I'm still thinking about you though...and wish it could be different for you. Today's your last day of rads...I know no bell ringing, but I'm sure it will be nice to not have to go every day :) That daily traveling, no matter how close or far, gets to be monotonous after a bit. Thanks for the suggestions for Netflix! I do have The Blacklist in my favorite list. I haven't watched it yet. I don't mind subtitles at all...honestly my husband and I rarely watch anything besides foreign language shows. I find they have more depth to the characters for some reason. And HAPPY BIRTHDAY!! :)

    TwoForOne - I'm glad you're feeling better! The odd aches are worrisome, when they wouldn't have been before. I had really odd flank pain (left side) for about 4 days in the beginning of December. It hurt so bad when I yawned or took a deep breath. I ended up getting my Mirena IUD removed, because I didn't want it in while taking Tamoxifen. The pain was gone the next day and never happened again. Not sure that had anything to do with it, but pains are so noticeable now. Happy for only one more day for you! :)


    phoebe0610 - welcome! My suggestion is to use whatever lotion/cream that's suggested by your RO from the moment you start treatment, even if you don't notice any issues. I'm 17 treatments in (13 more to go) and I'm pink and a little sensitive, but not itchy. I'd like to think my religious application of the lotion/cream/ointments have helped.

    Poppy - how are you feeling after being done for a little over a week? Healing up well?
  • twoforonespecial
    twoforonespecial Member Posts: 35

    I'm done! So, so glad to be done with radiation. No bell, but the techs gave me a rose and it made me cry. They were all so nice. (I did sometimes wonder how some of the young guys who spend their days staring at breasts manage to separate work and life . . .)

    The most interesting thing was that for the first time I saw someone I know walking out as I was walking in. I've always expected this to happen as we're in a pretty low population area, but it took until my last day. I immediately emailed her when I got home, and turns out we have a very similar diagnosis, she's just a few weeks behind me in treatment. It's someone I was quite friendly with years ago, but haven't seen much in recent years. I'm sorry that she's going through this too, but I am excited to have someone to commiserate with. We've already planned to go for a walk together soon. My friends have been great, but I try so hard not to just spend my whole time with them (always walking outside, masked) talking about cancer . . .

    Good luck to everyone finishing up, and those of you just starting. I noticed that these groups seem to keep going for years, so I look forward to staying in touch with you all.

    Next stop: Tamoxifen!

    Take care,

    Rachel

  • mama2fourkiddos
    mama2fourkiddos Member Posts: 48

    Congrats on being done Rachel!! :) And good luck with the tamoxifen. I've been on it a little over a month now. I would say my biggest gripe is what it did to my sleep pattern. I just feel a little off, nothing life altering. I hope you tolerate it well! :)

  • iamloved
    iamloved Member Posts: 197

    Did anyone in this group have the hypofractionated radiation? If so can you tell me how it went for you? I start i. One week and I am getting nervous about the process.

  • crsharper
    crsharper Member Posts: 36

    Hi Everyone!! I've missed you all and our chats!! :-)

    Update on me. I start my Boost on Tuesday so only one whole breast treatment. I'm so relived that it is almost over. This week has been much better for me. The two weeks before were awful. I was so tired and depressed which I think was making me moretired. This week my energy level has been much higher. I think I read somewhere that the beginning goes fast and the end goes fast and the middle drags on. That is exactly how I felt. My skin is doing a better. It is not itching nearly as bad. Still red and dry but at least it's not itching. I'm pretty much not wearing a bra as much as I can. I've go one spot under my arm that is raw from where one of my stickers was. All in All I'm good though, looking forward finishing up and starting my Tamoxifen. I want to check out the message boards about it too and see if there any tips there. I'm interested in any supplements that may help with some of the symptoms.


    Hope everyone is well. Would love to hear from y'all!!

    Much love! Christie


  • Poppy_90
    Poppy_90 Member Posts: 84

    Congratulations on being almost done, Christie! I hope you do something special to mark the day. I celebrated with sushi and Prosecco. It’s such a wonderful feeling still to wake up and realize I don’t have to rush to radiation. I’m sorry you’re feeling so exhausted. Toward the end, I was also absolutely spent. I remember one night I couldn’t stop crying—and I’m not a cryer—my poor husband! He kept asking me what was wrong and how he could help and I just kept telling him I didn’t know.

    I’m slowly getting my energy back, and my walks are getting a little bit longer and almost every day. I took today off, though. I went out yesterday and got caught in some wintery mix of snow and frozen rain..it was not fun! I figured I earned a lazy day today.

    It’s so good to hear from you. I haven’t posted much lately. I’m trying to process everything now that the medical side of things has slowed down. Hope you are keeping well. What day is your last treatment?

    Sending you much love back! You’re almost there 💕

    Kristen

  • twoforonespecial
    twoforonespecial Member Posts: 35

    Hi Iamloved, Welcome to our cheery little group!

    I had hypofractionated radiation (I'm not sure, but it seems to be the most common option these days). I had 21 treatments total - 16 whole breast, and 5 "boost" (where they focus just on the area the lump was removed). Clearly each person has a different experience, but I can report that it is possible to get through with minimal side effects. I don't know how much was luck vs. other factors. I was prescribed a steroid cream (mometasone furoate) to use from day 1, and told to use nothing else. I had a tiny bit of redness and sore skin, but really minimal. A few days after finishing treatment my skin seemed completely back to normal. I think this may be not so common though. I also never experienced real fatigue - I was dragging a little, but it felt as much due to psychological factors as anything physical. I got outside and walked a lot - probably averaged an hour or more of walking a day - and maybe that helped? I have a dog, so had to do it. I also walked with friends a lot, which was an incentive to get out. I also started an online yoga class (I've never really liked yoga, but somehow it feels like something you should do after a cancer diagnosis . . .)

    Next up is Tamoxifen. I have another week until my appointment with the MO. He scheduled based on an expected 30 radiation treatments, not sure why he didn't know about the shorter course with hypofractionated. I thought of calling to schedule an earlier follow-up, but decided to give myself a couple of weeks off. I feel so much back to normal now, and am a little scared of the side effects of Tamoxifen.

    Christie - I read a ton of posts about Tamoxifen awhile back, and honestly wish I hadn't. I'm keeping my fingers crossed that I'll have minimal side effects with that, as I did with radiation, but there are definitely some people who have had a terrible time. What I learned is to ask about starting on a lower dose and gradually increasing - and some people just can't tolerate a high dose and stay on a lower dose long term. Also, I've been told that if Tamoxifen is awful, I can try ovarian suppression and an aromotase inhibitor instead - apparently it's OK to switch from one to the other, and even back again, to figure out what will work best for you.

    Hope everyone is doing OK! I'm guessing that most of us who started radiation in December are finished or close to it. Onwards and upwards!

    Rachel

  • mama2fourkiddos
    mama2fourkiddos Member Posts: 48

    Well, I'm a little late to the party lol. Nice to hear from all of you again. I'm glad to hear you're doing mostly well and still just trucking along with all of this!!

    Congrats on your upcoming completion, Christie!! Yay!!! :)

    I actually finish up my radiation on Thursday! I'll be so relieved to not have to travel over to get treatments everyday. It's definitely tiring. I've been dragging lately, but I think a lot of that has to do with the Tamoxifen. I've been really dehydrated lately too, but I'm trying to keep up with water...another side effect of Tamoxifen :( The skin under my breast and my nipple cracked...ouch, it stings. Did that happen to any of you ladies? What did you put on it? I've been using Neosporin and Aquaphor. I saw my MO today and I'm going to start getting Lupron shots next week. Ugh, I'm dreading that, but maybe it won't be as bad as I imagine it to be :(

    I hope all of you moving onto Tamoxifen handle it well, I think it depends on the person. I definitely have side effects, but nothing so bad that I would consider wanting to stop taking it.

    Take care and be well, sweet ladies!!

    Gabrielle

  • crsharper
    crsharper Member Posts: 36

    So good to hear from everyone!! We are all definitely on the countdown. I had my first boost today. It was quick!!

    Poppy I am definitely celebrating. My friends are taking me to dinner and then on the 2/3 day m headed to Destin for a few days. I want to have a definite before and after!!

    Mama I’ve got a space under my arm where two of my stickers were that is cracked and it’s bothering me pretty bad. My nipple is really sore. I’m not sure if it’s cracked but it looks really weird lol. My RO gave me something called Silvadene. It’s helping a lot! Also since I started my boost today I’m hoping everything will start to heal!

    TwoFor I’ve read a lot about tamoxifen too that’s why I’m nervous lol. I think you are right though it just depends on the person and we just have to try it and see.

    My MO told me the same thing that if I just can’t handle it we can do Ovarian Supression and do an AI.

  • crsharper
    crsharper Member Posts: 36

    Guess who finished radiation today!!?? This girl!! So happy to be done!! I can't believe the load I feel lifted off myself.

    Take my first Tamoxifen pill tomorrow. Not looking forward to that but know that I have to do it so I'll just take it and roll with it.

    Any suggestions you Tamoxifen ladies have would be appreciated it. Do most of you take it at night or in the morning? I take all of my meds at night because I have to take thyroid meds and waiting 30 minutes to take all of my other meds made me always forget...I feel like I read somewhere that people say they like taking their Tamoxifen in the mornings...let me know if you have any thoughts one way or the other...

    Hope everyone is thriving! :-)


  • mama2fourkiddos
    mama2fourkiddos Member Posts: 48

    Congratulations Christie! It does feel good to be finished, doesn't it!? I finished on Thursday and it's such a relief to not have to go anymore :)

    As for the Tamoxifen, I've been on it since December 3rd. I take mine at 7am, which my MO suggested to help with sleeping issues. I've tried melatonin, but it doesn't make me feel well the next day, even a really small dose. I do have a lot of trouble falling asleep when I first go to bed, but I've been able to sleep better over the past week or so, so maybe some of that had to do with the radiation. Drink a lot of water...it's very dehydrating. I wear contacts and they were kind of getting stuck on my eyes for several days. I started drinking a ton more water and that made all the difference. I've noticed some slight muscle/bone aches, I've been a bit more emotional at times and a little bit of a foggy brain, but other than that it's been OK, nothing terrible enough to stop me from taking it. I get my first ovarian suppression injection on Wednesday...a little worried how that will be, but however it goes I'll deal with it :)

  • twoforonespecial
    twoforonespecial Member Posts: 35

    Congrats Christie! And good luck with the Tamoxifen. I'm starting that very soon as well - got the prescription from the MO today, and it's coming from the mail order pharmacy so will probably take a week or so to arrive. I did mention all of my concerns about side effects, and the MO said that while those are real side effects, about 50% of his patients have nothing worse than hot flashes. I'm still nervous about it, but will just hope I'm one of the lucky ones.

    I do have a new solution for insomnia if anyone wants to try. Some friends and I have decided to read War & Peace over the next 4 months. I've discovered that I can get through about 10 pages before my eyes close. I went to bed the other night at 9:30 and fell asleep right away - it's rare that I even attempt to get to bed before 11 or 12 these days. So I'll save my reading for nighttime if I find the Tamoxifen makes it hard to sleep...

    Hope the rest of you are doing well!

    Rachel

  • crsharper
    crsharper Member Posts: 36

    Thanks ladies! I slept in today because I was so happy to not have to get up and go to radiation!!

    MAMA I wear contacts also and my eye dr told me to start using Refresh drops now. He said you really can't use too many of those and that they will help a lot. He said your eyes are like your lips you want to keep them moist so they don't get chapped. Made sense to me! He also told me to put warm compresses on them at night a couple of times a week and that will help release oils from your eyelids. Good luck with your shot!

    Two for Good luck with your Tamoxifen! I read the message boards and it seems like everyone has side effects. I have four friends that are on Tamox and they have had no issues except for hot flashes. So hopefully we will be the lucky ones and no SE!

    It's our little cancer insurance policy the way I look at it so we kinda got to do it right??!!

  • crsharper
    crsharper Member Posts: 36

    oh and that is awesome that you are reading War and Peace although if you only get about 10 pages in, you may be reading it for 10 year. lol!

  • westmar
    westmar Member Posts: 10

    Newbie here. Read the whole thread and it seems there are some very wise women here, so I would appreciate any advice. I have had 6 rad treatments. The first 2 were almost unbearable. The last 4 were with an anti-anxiety pill. I had a lumpectomy on Nov 3, 2020 and on Dec 1, my only child died by suicide. He was only 23 and leaves behind a 3 year old son. So, needless to say I am barely a functioning human. Devastated is putting it mildly. I went on Friday and was crying before I even walked in the doors. The tech asked me if I took my anxiety pill. I said yes, but my son is still dead. I got thru it, but barely. Every day is like climbing Mt Everest. I will get it done, but my anxiety is over the top now when I read about all the side effects of Hormone Therapy. I can't handle much more. Do any of you know if I can delay or not do it at all. My MO said 5 years. My oncotype was only 18. Not sure if the whole group sees this or just is Iamloved?Can't figure how to enter Dx. Will enter it if someone can direct me. Sorry I have the attention span of a fruit fly.

  • twoforonespecial
    twoforonespecial Member Posts: 35

    Westmar, I am so, so sorry to read your story. I can't even imagine how difficult things are for you.

    Can you delay or turn down treatment? Yes, of course you can. Whether you should is another question entirely. I imagine the best first step would be discuss the benefits of treatment and the risks of delaying treatment with your oncologist so you can make an informed decision. How much risk are you willing to accept? Your doctor likely has calculators that can input your specific information and give you an idea of chances of recurring cancer with and without hormone treatment.

    I just got my Tamoxifen today and I am dreading taking it (thinking about waiting another few days before starting). I did ask my MO about all the side effects that I've read about. He said that about 50% of the women he's prescribed it to have had only hot flashes and no other side effects. I guess I just have to hope I'm in that group.

    In the short term, what can you do to get through radiation treatment? Do you have a family member or friend who can come with you? Would they be allowed in the waiting room? My treatment center had a no visitors policy, but they clearly made exceptions for people who needed help. If guests are not allowed in, perhaps you could make arrangements to wait outside or in your car and have them call when they are ready for you to come in. I wish I had some good suggestions, but that's the only one that comes to mind.

    Regarding the Dx and treatment in your signature line, click on the little down arrow in the upper right corner of the screen and then click on "my profile". You'll be able to add info from there that will show up at the bottom of your posts.

    I hope you are getting some support at home. You seem to have hit a perfect storm of crises, and I don't think anyone expects you to navigate it on your own. Good luck getting through the first hurdle of radiation treatment.

    Rachel

  • westmar
    westmar Member Posts: 10

    Hi, thanks for responding! Our Dx’s are quite similar. I’m 61 post menopausal. We are in Red Phase, which means 1 family bubble and patients only in Oncology. Ugh. I live alone... double ugh. I keep hoping this is all a bad nightmare and I’ll just wake up and plan a nice spaghetti super for my son (his fav) and go the job I loved. (Lost that in March due to company closure) I am grateful though that I live in 🇨🇦 and everything is covered, down to creams, gas & parking. Also receiving $1,800/mth from Gov. for those who lost their job due to Covid. A little light in my dark tunnel. Please let me know how the early days of Tamoxifen go for you. I am already filled with anxiety and deep grief (shock), I can’t imagine what effects it will have on me. Bon Courage!

  • moderators
    moderators Posts: 8,633

    Westmar, we send you many hugs. We are so deeply sorry to hear all you are going through, most especially the loss of you son. Just terrible, we are so sorry. Do you have good contact with his 3-yr old son? TwoForOneSpecial gave you great tips re. treatment, also on how to add to your diagnosis/treatment through your profile. Please know we're all here for you you, and feel free to PM us Mods if you need additional help with your profile, or finding information to help guide your decisions.


  • westmar
    westmar Member Posts: 10

    Hi, Thankyou 🙏🏻. I’ve only seen my grandson once Xmas Eve. He is exactly like my son at that age. In my mind he is mini Wes. I literally had to go cry 3 times in the hour he was over. Because of the red phase (next thing to lock-down) and my emotional fragility it’s best we wait it out a bit. It’s like I don’t want to feel love again for fear of pain. I am kinda broken now as you can tell. I’m crying as I type this. Makes it real in a way. Was just scrolling the forums but I think joining in was a good decision. I did go on my profile, filled it in and said I was successful, but not sure why it’s not showing up 🤔

  • mama2fourkiddos
    mama2fourkiddos Member Posts: 48

    Westmar - big hugs to you...I'm so very sorry to hear all you're challenged with right now :( Sometimes life just gives us so much to handle at one time. Just get through one radiation treatment session at a time. Just get through one day/hour at a time right now. Surround yourself with as much support as possible. I love TwoForOne's idea of bringing someone to treatment with you, even if to just wait in the car...if that's not possible maybe call a friend on the ride to and from? How many more treatments do you have to do? My experience with Tamoxifen overall has been ok. I started 2 months ago. Annoying side effects, but not life altering. I was scared of the hormonal therapy too and what it would/could potentially do. But the side effects are gradual, not sudden, so I guess that makes them easier to process and work through. Good luck to you and be kind to yourself.

    Gabrielle

  • Poppy_90
    Poppy_90 Member Posts: 84

    Christie: I was away from the site for awhile—life got really crazy. I’m so sorry I missed your last day. Know that I am cheering really loudly...just late! How’re you feeling now?

    Rachel: I tried War and Peace so many times...could never get through it. Anna Karenina though, one of my all time faves. If your group gets tired on War and Peace, give it a try.

    Westmar: I am glad you found us and I’m so sorry for all you are going through. We are all here support you. I know that doesn’t fix anything, but I hope the support makes things a little easier.

    I missed all you ladies! I am so sorry that I disappeared. But I’m back now. Sending you all lots of love and big hugs.

  • westmar
    westmar Member Posts: 10

    Gabrielle, thank you for your kind words and your experience with Tamoxifen I am 7 treatments in of 19. I went in today with determination that I was going to be strong... no tears. It turned out I walked very angry. One tech that I did not recognize suggested out of the blue as I sat on the steel slab that I go on anti depressants. How it would give me a different outlook, that I would be able to “handle things” better and went a 1 minute rant. The other tech saw the anger brewing in me and looked in my eyes to calm me down and just get through the treatment. I did not ask for her input and felt invaded, that maybe she read my file. Got through treatment with my heart beating out of chest. I will def talk to someone tomorrow. I am grieving and incredibly sad. Do they expect me to go in all chit chatty and talk about the weather

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