What to expect from treatment and ways to cope with side effects.
Posted on: Nov 20, 2018 03:28PM
I don’t think anyone has started this group yet, so here goes. Anyone else doing this over Christmas?
Posts 391 - 420 (516 total)
Jan 1, 2019 08:36PM Spoonie77 wrote:
CherryI3 - Same here. I lost my brother to NH Lymphoma when I was a teenager. I've lost uncles to cancer and watched both my Mom and my Dad fight cancer. It took both my great grandma and my grandma. So yeah, triggered much? Hmmmm um yeah.
So count me in on the somewhat stressed boat. :)
BUT the upside of that life-long experience with cancer, the losses and such, and my own Spoonie Life is that, like Alice reminded us (whether it's chronic or treatable or not) each day is what we choose to make of it, the most we can, with what we have.
Sure we don't know if the cancer will come back, when it will come back if it does, or any of those other answers to questions to plague us, but we also didn't know before we were dxd with cancer about the day or time or way that we would die --- it was up to us to make the most of our life WITHOUT knowing any of those unknowns.
Sooooo even though I get triggered and panic at new pains (I'm sure at some point that may settle down a bit), I find comfort in knowing that no matter what, cancer or no cancer, tomorrow is and HAS NEVER BEEN never promised. All we are given is today. I choose to live how I can in peace today and let tomorrow sort itself out. And that took me MANY years of chronic life to be able to say. It's a process, much like everything esle in life....it takes time to get the hang of and hone. Just my 2 cents, maybe it will bring someone else a bit of comfort along the way.
Hugs and healing my friends...
Jan 1, 2019 11:02PM Salamandra wrote:
A Domino book! That is a brilliant idea!
I'm almost done. Two treatments left. Up late with anxiety tonight. I think related to finishing treatment and doing back to work.
I'm loving the cats and dogs and chickens. Onyx was beautiful.
I feel like I can't go back to my old life as though nothing changed. But I also can't really put my finger on what's supposed to be different.
Jan 2, 2019 12:41AM Raysal wrote:
session eight today.. stabbing pains on my boob that woke me up middle of the night .. i hope it doesnt continue all the way..
Cherryi3, lost my dad to cancer when i was 20, my brothers and sisters were all much younger, so like you its triggered a lot of emotions in me esp with my kids since theyre 8, 6 and almost 3.. my dad was ned, and started deteriorating without being able to pinpoint what exactly was happening till cancer was spread throughout. Was a year between diagnosis and him paasing away. So this keeps haunting me but i try to remind myself that his cancer was different than mine , he had lung cancer, and that i should live each day.. no easy feat..
Salamandra, yay the final stretch! Good luck on the last two!!
Jan 2, 2019 11:07AM - edited Jan 2, 2019 11:09AM by PurpleCat
Alice, thanks for sharing your wise perspective. It seems a very healthy way to think about all this, and I'm trying to see it as an annoyance too, rather than a constant black cloud.
Salamandra, I can relate a bit to the difficulty of going back to work. In my case, although I have kept to my normal schedule and have been really glad of the distraction and focus, I have really been struggling at our morning meetings and in other public and social settings. I'm forcing myself to do things because avoidance will just make it worse, but it's not easy. One thing I tell myself is "You've done much harder and scarier and more stressful things than this over the past sixteen weeks; you can do this too." Sometimes it works. Is there any way you can do a "soft return" to work before going back for real? Stop by at lunchtime to say hi to everyone, work for just a couple hours a day for a bit and build back up, spend a couple days just catching up on emails and deskwork before facing the public? Is there anyone at work to whom you can confide how hard this it?I felt surprisingly emotional on the day of my last treatment. I had to fight off tears a couple times at work beforehand, but on the drive to the center felt the kind of physical excitement I felt as a kid on Christmas morning.
I had a long post planned touching on the mixed emotions of the last day of treatment, the happiness at being done vs. the end of those constant reassuring check-ins, the uncertainty of the future, the need for vigilance going forward vs. not letting it preoccupy me, the growing knowledge that life will never be the same but that could also be a good thing in some ways, etc. But in the midst of typing I had an anxiety attack and had to go take an hour-long walk around the block to assure myself I wasn't having a cardiac event, which apparently I wasn't, since the breathlessness and chest pains went away instead of getting worse. I think I need to get off these boards for a while, as supportive and comforting as they are, and come back after I've lined up some mental health care.
Jan 2, 2019 11:21AM egregious wrote:
Looks like you are continuing your treatment this month. Wanted to let you know there is also a January rads group so maybe you can give advice to people starting after you and wondering what to expect.
Good luck as your treatments proceed! I'm almost two weeks out and things are definitely looking up.
Jan 2, 2019 05:31PM egregious wrote:
DeeBB - Exciting news!
YOU DID IT!!
Jan 2, 2019 06:40PM Dani444 wrote:
Debb, PurpleCat, LPLibrarygirl, Cherry, And (hopefully I didn't miss anyone :)
So happy for you guys finishing!
Jan 2, 2019 09:13PM LPLlibrarygirl wrote:
PurpleCat, I second everything you said. I am already taking Zoloft (and I just read tonight that there is a connection between Zoloft and pr-) and waiting to be contacted by a counselor. It seems the more I read and research the worse I feel. PR- is scaring me tonight. I read more about it on another thread and then looked up luminal A and B...someone needs to take my computer away! But I am drawn to this site like a moth to light.
Today I went to my first very gentle exercise class back at my hospital. Next week I will also add gentle yoga to my line up and hope that they both will help. My daughter bought a weighted blanket for me and it arrived today so it's on my bed ready for trial tonight. Can't wait to try it out.
A shoulder x-ray and an ortho appointment have been scheduled-two weeks to wait.
Congrats DeeBB! Raysal, I hope you get a good night's sleep.
Peaceful wishes to all.
Jan 3, 2019 02:39AM PebblesV wrote:
OMG the cats and the dogs and the chickens! Love it and they all need to have their pages in the Domino book...
DeeBB - congrats to you as well for finishing! Hurrah!
So on the topic of life being different post-cancer I wanted to share this... 5 years ago my father had a stroke. He couldn't walk or speak immediately after, it was heartbreaking to see him try to rebuild some strength and fall over. He spent months recovering and bit by bit he regained everything - his speech, his strength, himself really. Today he is back full force and walks and bikes miles daily. He sent me a text recently that I keep thinking of - he reminded me that 5 years ago he had the stroke, and today he is the healthiest he's ever been. And that I can also get to the healthiest I've ever been, healthier than before the bc diagnosis. Others have done it!
I share this because I think AliceBastab's fighter attitude that this doesn't have to be all doom and gloom is a great POV. I also share this because I need it, because like Spoonie and Cherryi3 and Raysal, I've lost close ones to cancer (most impactfully my mother-in-law whom I was extremely close to) and the pain of watching her go through it never leaves me. But in her case it was lung cancer, and I need to remind myself sometimes that breast cancer is said to be one of the most beatable kinds.
I also share this for purplecat and salamandra and dani and lplibrarygirl and egregious and all of us to help lift our spirits... maybe 5 years from now, we too can look back on this and say, like my Dad, that we are the healthiest we've ever been. If he came out of a much more debilitating stroke, perhaps we can come out of this just fine!
Hugs and healing to all - and some extra encouragement from Domino (for her book lol). Here she is saying, “You can do it!”:
And here she is saying - well - “Feed me that treat you have in your hand mommy.” OK I asked for another ‘you can do it’ pose but you know how pups are, especially around food!
Jan 3, 2019 07:46AM - edited Jan 3, 2019 07:47AM by Salamandra
In a few hours I should be ringing too :)
Pebbles, thank you! You can add me too to the list of those who lost people. My mother was diagnosed stage 4 when I was 19, and died shortly before my 21st birthday. My lump was found 18 years later. Last night I dreamt of her healthy and with me and laughing. It was a good dream, though I'm tearing up now thinking about it.
We're never alone and always alone. That's life, right? I feel so lucky to have found all of you.
And I'm not sure what to do to get my fix of Domino pictures after this is passed! Pebbles, don't you think she may need her own blog? "What Domino Thinks"?
Jan 3, 2019 08:22AM LPLlibrarygirl wrote:
Thank you for my morning inspiration. I think it is just what I needed.
Jan 3, 2019 11:15AM Dani444 wrote:
Pebbles, Thank you for this well written inspiration, it is what I needed as well! Your dad is a rock star, so amazing to hear his story. I imagine that was very hard to watch. Through his perseverance and hard work you are able to give us encouragement so thank you for sharing his story! I do have a tendency to let the worry become my companion, but I do have the ability to work on overcoming that!! I would love to look back in 5 years and say I am the healthiest I have ever been and not look back and realize I let too much of the worry consume my days! I hope everyone has a great day!
And to Domino, I get it, I too get distracted by food :)
Jan 3, 2019 04:53PM Tigerlily318 wrote:
I rang the bell today! On to hormone therapy.....Pebbles, great story, and to everyone, I hope you're doing well and congrats to Salamandra and DeeBB and all else who are finished! At least with radiation, we all know that this too shall pass.
Jan 3, 2019 07:16PM PebblesV wrote:
CONGRATS TIGERLILY! Here is a happy Domino congrats for you and DeeBB and anyone else done with rads this week!
And to everyone who posted after I shared my story about my Dad - I’m SOoooo glad that was helpful. It made my day too to see your responses back. It helps me think of the bc as just this huge eye opener to get to my healthiest state and forge ahead. I’ve lost 28 lbs since the diagnosis so that’s a start!
Salamandra - I’m originally from Thailand and we say when you dream about your ancestors they are visiting you. Maybe your mom was visiting you and saying you can do this and be healthy? How interesting that the visit came the night of my post about my Dad and getting to our healthiest state...
Dani - it was so hard when it first happened and he had his moments too where we thought he’d never be the same again, so seeing him today and looking back, it’s just a great example and I think about it lots as it helps buoy me up too! Believe me I’ve had a lot of worry and tears and it still creeps in and it’s totally fine for us all to be anxious. That’s why I think of my Dad and his text to me and have decided I’m going to do everything I can to be like him and use this as the opportunity to get healthier than ever!
Jan 5, 2019 07:12AM - edited Jan 5, 2019 07:13AM by PurpleCat
Congratulations to everyone who's finished treatment! Before long everyone on this thread will be done, even those who continued into January!
Salamandra, I teared up at the story about your dream. What a gift! Thanks for sharing it with us too.
And Pebbles, your dad is so wise!
Dani, I love your five-year outlook. It's going to be so hard not to obsess about recurrences, but spending every day of the rest of my life worrying about it coming back is only going to waste those cancer-free days, however many there are, in worry.
And everyone, I wish we could all meet up for a big weekend-long retreat to sleep and take gentle hikes and eat healthy meals and share healthy recipes and indulge in one last taste of whatever it is we're each cutting out of our respective diets in hopes doing so will mean we never have to go through this again.
I'm five days past my final boost. The last whole-breast treatment was 10 days ago and preceded by a 4-day holiday break, so if it weren't for the one big zap the day after Christmas and then the boosts I'd be two weeks out. I can compare the boosted skin to the rest of the breast and see that the non-boost area is definitely less red in comparison and heading towards a tan. It's encouraging. The nipple is still quite sensitive, and I'm keeping the areola covered with a gauze square layered with Aquaphor. There's always a little dead skin stuck to it when I remove it, but nothing is bleeding, so I think it's just whatever skin would otherwise be peeling/flaking off without the heavy moisturizing. The whole breast at times feels heavy and dense, and there are pains that come and go. The pains aren't necessarily in the area of the scar, which somewhat surprises me and makes me worried that a new cancer is developing, but I tell myself it's too early for that. My underarm is tightening up in the same places as after the node surgery, but remembering to stretch helps. I'm definitely less fatigued too, which lifts my spirits.
Enjoy the weekend, everyone!
Jan 5, 2019 03:23PM - edited Jan 5, 2019 03:58PM by Dani444
Tigerlilly- CONGRATULATIONS!!!!!!!!!!!!!!!!!!!!!! Way to go. I hope you sail into hormone therapy with no SE's.
PurpleCat- I hope your side effects from rads start to taper off soon! I had that tight feeling in my radiated side yesterday too, felt like my implant weighed a ton all of the sudden. It was better this AM and I am glad. I am still worried that this implant is going to be negatively affected by this. So glad to hear your fatigue is starting to resolve, I bet that really makes a difference!
Love the idea of a retreat. BCO should think about starting one, it would be amazing. Or maybe a group cruise, as I am a sucker for a beautiful beach. I like the idea of just one restful weekend where we can drink some adult beverages, eat carbs, cheese,and have dessert, like a last hurrah.
I actually felt like I did pretty good lat night at work. We were crazy busy and had little down time during my 12 hour shift. But I didn't end up in a chair struggling to keep my eyes open! Hope that trend continues. I am so lucky to have supportive coworkers that don't get phased if I do need to sit for a minute, but I always feel bad when I do. I had an area of skin that feels hyper sensitive and even my camisole was irritating it. Someone said "just go without a bra" my reply was "well I would but this right breast is only a couple months old, and the other is 46 so it still sags" (but I guess not technically 46 since I didn't really get breasts till my early 20.s) Anyway.... I have 13 to go, the last 5 being boosts. I am getting there!!
Jan 6, 2019 01:24AM - edited Jan 6, 2019 01:25AM by PebblesV
Purplecat and Dani - I'm in for that retreat! Wouldn't it be lovely for all of us to meet in person too. BCO moderators where are you?
Dani - LOLOLOLOL on saying your right breast is only a couple months old and the other 46. I might try that to explain my lopsided breasts!
Salamandra - if you need your Domino fix, she does have an Instagram account alongside Tucker and Kit Kat here! It's all paw photos - I use Facebook for my personal updates, so instagram is all about the fluffs.
It's 3 weeks now, almost 4, since I finished rads and my breasts are finally starting to look more similar to one another. The color is the same. Nipple not quite but more normal than it's been for awhile. I think I have less of those random stabbing pains too... so it seems to get better and better as time allows us to heal. Domino says maybe it’s time to come out from under the covers soon
Jan 6, 2019 03:37PM LPLlibrarygirl wrote:
Count me in for the retreat! What an awesome idea! It's snowing and blowing at my house right now so let's do it someplace sunny and warm.
Jan 6, 2019 06:02PM Salamandra wrote:
Aww Purplecat, thank you.
Pebbles, I followed on Instagram :) Relieved to know I can keep getting my Domino fix!
I just got some blistering along the underside of my breast. I emailed my radonc. It's a pretty tiny patch, kind of dry/itchy with whitish raised parts - I can't see it very well. I wish the raddres pads stuck to my skin better, I will see if I can get some tape and tape it on.
Tomorrow I'm going to try to treat it like a 'work day' but for all the house things and chores and answering emails. I'm trying to psych myself up for my return to normal life!
Jan 7, 2019 03:42PM Dani444 wrote:
Hey everyone! So I have 12 more treatments! The last 5 being boost to my skin/mastectomy scar. I am various shades of pink, red and brown now, and have a blister under one of my markers. My underarm area is really irritated in the areas that have feeling. I am feeling a heaviness to my "breast" and it is definitely swollen I just hope this implant hold out!!!!!!
Salamandra- What are the pads that you are referring to? Is it something that helps with pain? I hope the blistering heals quickly! The lady that is after me that I always chat with while waiting was showing me her peeling skin and I felt so bad for her! I asked what they gave her to put on it, she said just the regular moisturizer. So crazy how different each center is and their recommended creams.
I hope everyone has a great week!
Jan 7, 2019 04:49PM PebblesV wrote:
Ladies we should do a southern CA retreat - sunny and warm here most of the year and maybe Domino and I can host! Here’s how Domino feels about that idea:
Salamandra - awesome that you followed! Although lately I’d been posting more pics to this site than Instagram LOL. Will have to get back to it.
Dani - good luck with the final 12! Good news on the final 5 boosts is they are localized so the rest of your breast and surrounding areas will have a chance to recover. I got a blister too... it heals, doesn’t leave a mark. I think it healed when I was getting the final boosts so it heals quickly once you let it. 100% aloe vera gel is what I used the most for the blistered area, plus Miaderm all around, and Aquaphor now post-rads.
Jan 8, 2019 07:10AM PurpleCat wrote:
Go Dani! You can do it! Those last five boosts really were easier for me, and by the last one I could already see that the non-boosted skin was beginning to fade. I also felt less tired afterwards. You're almost there!
Pebbles, I'm not on Instagram but now I finally have a good reason to sign on! I'll need my Domino fix! And congratulations on a successful procedure, and very best wishes for the future ones whenever you're ready for them!
Good luck today, Salamandra! Thinking of you as you return to work. You've done far harder things than this over the past months; you can do this too.
I brought two of my favorite treats to our employee lounge yesterday. Completely unhealthy treats loaded variously with sugar, butter, white flour, salt, processed cheese, animal fats, and colors not produced in nature. I wanted to thank everyone for being so supportive and concerned through all this, and also satisfy my cravings one last time before committing to some healthy changes. The treats fulfilled both purposes, but I also unexpectedly discovered that it was a way for me to signal, both to myself and my coworkers, that this episode is in the past and I'm ready to be back and pulling my weight, both physically and mentally. I had conversations with my boss and a coworker making plans for the next several months, and it felt SOOOO good. A little scary too, as the fact is I DON'T know what the next months and years will bring. From what I understand, this probably won't recur, and even more probably won't kill me. Probably. Which means, it might, even if I replace all tortilla chips with kale chips. But to paraphrase what so many of you have already said in various eloquent ways, I can't live my life under the shadow of fear. A better way for me, I think, is to adopt the language used by many dear older folks in my religious tradition, who say "Lord willing" whenever they state future plans. I understand why now.
Jan 8, 2019 09:53PM LPLlibrarygirl wrote:
Awesome post, PurpleCat. A friend called on Saturday when I was feeling down and I commented on my oncotype recurrence rate of 21%, though I can knock it down a few more points with lifestyle changes and an AI instead of Tamoxifen which the number was based on,I think. My friend immediately said, "So that means that it's almost 80% not coming back." That sounded so much better, and that's what I need to remember to focus on. I host a weekly preschool storytime at the library and although I have gone back to my very part-time job, a job I love, I haven't started my storytime yet. It feels like I am afraid to commit because I am waiting for something else to go wrong. I could make a list but it's too late tonight
Jan 11, 2019 10:53PM Dani444 wrote:
Hey everyone, Hope everyone is well. I don't remember if I saw that anyone else is having/had rads to a reconstructed breast (silicone implant) I know most that have had mastectomy had the TE's placed. I am getting concerned about my swelling, and wondered if anyone else had a lot of swelling. I am really,really red and my underarm is looking pretty angry. It's just this swelling is actually causing some pain now. When I got up from bed this morning it hurt as it did after my surgery, its like I can feel the implant shifting, and that movement is painful. I only have 3 more regular treatments and then the boosts to the skin/scar and the techs said it is minimal radiation and very localized. Shouldn't get any scatter or anything. I see the RO on monday and may send a picture to my PS. I am basically just venting some fears I guess. I am so worried about losing this implant. I hesitated to post in the Jan thread, I didn't want to seem dismal to those just starting! Anyway, thanks for listening :)
Jan 12, 2019 04:16AM Lavenderlee wrote:
Dani444 I finished rads at the end of December - 33 treatments - with silicone implants. I noticed quite a bit of swelling and discomfort in my breast, but it has decreased to normal now (2 weeks post final rads) and is just a little tan. I still moisturize it everyday and do Bikram yoga to help with tightness.
Additionally, after a lot of research I started taking singulair to help prevent capsular contracture. I don’t know if starting after rads would be helpful or not, as I was told to start the first day.
Hope all goes well when you see the RO.
Wishing all you ladies comfort and healing as you wrap up this phase.
Jan 12, 2019 11:36AM Dani444 wrote:
thank you so much for responding. I will put a call in to my PS on Monday and ask about singular. I am glad to hear your swelling went down within a couple of weeks. I was having a lot of anxiety about it!!