Starting chemo February 2020
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dysonsphere, hoping for good results.
micdpowers, I'm glad everything went well and you are feeling better.
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My scans came back clear. I was really worried about these. but I am clear and MO has started me on Arimidex 1mg every day for years and my radiation will start in September after my reduction heals a little more. Hope you are All doing okay. I have also been moving to a new apartment and so I have not been online as much as I like!
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YAY Dysonsphere!! That’s great news and must be a huge relief.
Micd- I’m glad your BMX went well. It certainly takes time to adjust to everything.
Beyond some light flaking, my skin is almost back to normal from radiation. I have some hip/back/joint soreness that I think is from my AI, but paranoia of the cancer metastasis is always there.
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dysonsphere - glad to hear the scans were clear.
Micd - glad the BMX went well.
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Dysonsphere - So glad the scans came back good, what a relief.
MicD - so glad the surgery wen well, it feels so good to get it over with. Hopefully the healing goes well.
Ajminn- It's great your skin survived radiation, I'm pretty worried about that. Sorry the aches are freaking you out, its probably just the AI, but it's definitely frustrating that we have to live with the fear and doubt. Our schools delayed their start a few weeks and went all virtual. I'm glad they did just for the fact that the teachers and admin have some time to focus on making virtual learning the best that they can, and not worried about all the safety precautions that would be required to be in person school. But I'm so sad for my kids, because remote learning isn't fun. There is no right answer and no winners.
SE - is your surgery scheduled?
mmorigan - how you feeling today? you must be getting tired with radiation and kadcyla all at once. I'm really interested in the range of side effects I'm reading about with Kadcyla.
I've been doing OT for my lymph node removal arm and I really like it. She's given me lots of exercises to do at home, and my range of motion on both arms is so much better. I really try to carve out at least one time per day to slow down and do the stretches. I also get a lymphatic massage, which is relaxing and gets all the lymph fluid moving and keeps it from building up. My OT said to expect to regress as my skin tightens up with radiation, but that we can meet once after about 10 sessions and then plan on meeting again after radiation to assess how I'm doing and if i need more therapy.
Went to HP infusion yesterday and somehow my port access hurt so bad. Nurse said it moved when she was doing it, ouch. I had put lidocaine on. No real side effects showing, a little tired today and my stomach is a little affected, but nothing bad.
Also, for those who have done radiation, question for you. My doctor wants me to do a follow up echocardiogram at the end of September. That's right about when I'll be finishing radiation. It seems to me like it would hurt to have an echocardiogram on my raw, radiated skin. Hopefully I don't react much, but just thinking it sounds bad. I already sent a note asking my oncologist what she thinks.
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@fab4mom - I've been a little fatigued yesterday and today but, I think that's from the neupagen shot i got the last 2 days (to build up my WBC)
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@Fab4Mom - about radiation, I almost didn't make it through the last week of radiation therapy because my skin was melting. It hurt where the top layers were missing. It's not like a sunburn; it's burned from the inside out. My radiation burns took weeks to heal. Not everyone or situation is the same, obviously. I hope your experience is much better than mine. Best Wishes.
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Hello, I haven’t been on for awhile. I had a lumpectomy in January, four rounds of chemo Feb thru April, and radiation May and June. I had two primary triple negative cancers five years apart.
I really didn’t have a medical oncologist to consult with at the practice I was going to. My surgeon acted as my oncologist as we decided my chemo. In my town there’s been a lot of changes with oncologists and facilities since December. I decided then the best course of action was to stay where I was. Which was fine until they desperately pulled in an oncologist to fill in while they continued their search. He was terrible. I did not feel respected at all.
I had radiation at the hospital cancer center and liked my RO very much. We had a very heartfelt discussion when I finished radiation and was told my liver enzymes were up. Seriously, another thing to worry about?
I decided to take a break and enjoy my summer which I did for five weeks. My RO referred me to an oncologist she really likes. I met with her Tuesday and she is wonderful. She had gone through my history, recognized and has allayed my fears, and has a plan that I like for my follow up care. First steps are bone and CT scan next week. I’ve NEVER had any scans in six years of dealing with this. Just mammograms. Please pray they are clear. Btw, liver enzymes are okay now.
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dysonsphere, woohoo
Fab4mom, my surgery was sched. for 9/22.
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@Craftylife61 - will pray that your scans are clear. So glad you found an oncologist that you can confide in and trust her guidance. It makes everything easier. Best Wishes.
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Craftylife - i hope your scans are clear.
scattered energy - congrats on getting a date.
SwwetTalker - sorry you had such a rough time with Rads
From the BCO Article
Your skin reaction may be mild and limited just to these areas, or your skin might have a more dramatic reaction to radiation, covering more of the breast area. This is more likely to occur if:
- your complexion is fair and you're susceptible to sunburn
- you have large breasts
- you are receiving radiation after mastectomy, and the treatment is designed to give a high dose to the skin
- you've had recent chemotherapy
Check, check, check and check...I'm so screwed 😁0 -
morrigan_2575, 🤣🤣🤣
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Morrigan_2575 - check your pharmacy for Domeboro "soaks" - they are very good at soothing skin and the under-boob area for those of us fair-skinned girls who are "well endowed". I had to order them from Amazon, and I waited too long. They are great. I made cloth rags by cutting up white t-shirts, since I didn't have any old-fashioned cloth diapers to cut up. The Silvadene Rx cream stains everything, so your nice clothes are out; be prepared with super large t-shirts you are willing to throw away. Best Wishes
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Thank you, morrigan_25 and sweettalker. Here’s something: my RO had me lay on my stomach for radiation. It narrowed the breast and gave them a better “target”. My cancer had been at the 1:00 position close to the nipple. I don’t know if that helps anyone but something to mention. Also, there was one week I was so chafed underneath from my bra that I stayed home and just didn’t wear one.
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mmorigan- I have all the same issues regarding radiation, except I no longer have large breasts, my new ones are small. I’m pretty sure I’ll be in rough shape by the end. My RO basically told me I’d be very red and possibly blistered. I also have extremely sensitive skin. I can do regular adhesives or chloroprep without getting rash, so I’m feel like radiation is going to be hard too
craftylife - welcome back. I’m sorry to hear about the liver enzymes and I really hope the scans go well this week. I feel like they provide some comfort, but going throw them is so tough. At least you will have a complete picture of what is going on.Ajminn - are you back to school this week? My high schooler starts freshman year tomorrow, I have one more week with the younger three. Desperately trying to finalize each of their workspaces. Older two kids have desks in rooms. 3rd grade twins will be at the dining room table, with me nearby. School ends at 2:10 and daily radiation will be at 2:30. Busy days ahead.
I start daily radiation tomorrow, the practice one on Friday was easy, so at least I know I can hold the position and my breath ok. We’ll see how the skin and fatigue hold up.
how’s everyone’s hair growing in? Mines growing, but I can still see scalp, which I hate. I’m so ready to not looks sick when I go places. I don’t hate the shaved head look as much as I thought I would, but I feel like I need makeup more than ever to fix my skin and under eye circles. There’s no hiding behind long hair.
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Morrigan- I checked all of those boxes too! It was rough weeks 3-6 with rads for me, but now that I am about 3 weeks out I honestly can’t believe how normal my skin looks and how well it healed overall considering how red and sore it was. No changes to my implant at all either (hoping it stays that way).
Fab4mom- School here starts 9/8 so I have 2 weeks yet! This is my last week of “summer vacation” before I officially head back next week to prep. My oldest will be in 1st grade this year. I work in the same district, which is nice. We are starting hybrid, so my son goes to school Monday/Wednesday and online the other days. Should be interesting...
As for my hair, it continues to come in pretty nice and full. I’m surprised. I don’t like it short at all in myself, so I still wear scarves and hats. It’ll be a while before I go without! I also need to step up my make up game if I’m going to go with short hair. Makeup has never been a strong suite for me!
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Fab4mom, growing the same. I have been gray since I was 11 years old so this color is normal. I will decide later if to dye my hair again or not.
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SE - your hair is growing in so thick. I had super thick hair before, so I’m hoping that comes back.
Ajminn - my hair doesn’t look good at all, but I kind of don’t care anymore. It’s so hot and I just let it go. Enjoy your last week of vacation. My elementary kids are on their last week off, but we don’t really have anything fun planned. Summer has been so long this year, between spring e-learning and now a pushed back start date for school. My daughter said she wishes they’d just start already. I appreciate that the district is giving teachers a little more time to prep and train for our 100 percent remote learning.
Anyone dealing with insomnia? I was the most solid sleeper before cancer. Fell asleep around 10-10:30 and slept until about 6-6:30 every day. Now I have trouble falling asleep, but especially trouble staying asleep. I wake up in the middle of the night all the time. I can’t tell if it’s my decrease in vigorous exercise, the medications, anxiety, hot flashes or what. I usually wake up hot, but not awful, and then I cannot fall back asleep. It’s so annoying.
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Fab4mom- My district decided to postpone 1 week, so now kids start on 9/24 instead. The district is still moving forward when hybrid. It’s going to be a chaotic year no matter what!
re: insomnia. Yep, I’ve been dealing with it quite a bit. It sucks. My kids are all finally sleeping through the night and now I’m up laying in the dark trying to avoid using my phone or turning on lights at 2 am. Not sure why...maybe the OS/AI meds? Maybe anxiety? It’s tricky for me to take any sleep aids because my husband works overnights so I’m solo with the 3 boys and don’t want to be completely knocked out!
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How's everyone doing?0
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I’m losing patience with my hair growth. I hate taking selfies, but here Iswhere I am at. I’m 1/4 of the way through radiation and so far so good. But I hear the trouble usually doesn’t start for a few weeks. My kids e-learning is making me crazy, they are coming out for a snack or break all day long and leaving a trail of destruction everywhere they go. Plus I have to keep them on schedule. Right as they finish up, I run out the door to radiation. By the time I get back it’s almost time for me to make dinner. My drive to radiation is about 20 minutes each way, and it feels like the only time to myself I ever get.
How’s everyone else doing?
SE - you started tamoxifen right? Have you had any side effects? I’m supposed to start after I finish radiation.
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Fab4mom: Your hair looks fantastic! I can't image going through all of this with kids, elearning and the rest of life. My kids are all adults, so that part is easier. I hope you find time for yourself. It's very important. I finished chemo on May 28th and I feel like my hair isn't growing fast enough for me. Since I'm working at home, I usually just throw on a baseball hat...but I'm hoping I won't have to for too much longer.
I hope everyone keeps moving through their next phase and has a good week.
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SE- I am back to work (sped elementary teacher) and while it feels good to be back to my “old life/routine” there’s nothing normal about school these days! Students don’t start for another week and a half, and I’m anxious to see how this all goes with hybrid learning, yet excited to see my students again. I’ve recovered well from radiation and some of my SE’s from starting hormone treatment have settled now.
Fab4Mom- you’re gorgeous!!! I don’t understand why everyone else looks for good with short hair and I don’t haha. Honestly, I really don’t like how I look. I just can’t embrace it yet. My hair continues to grow and it’s coming back stick straight like it was before. I won’t complain, I just want it back to a length I’m comfortable with. As far as distance learning- ugh, it’s truly the pits. My oldest son starts 1st grade in a week and half hybrid...it should be an interesting year
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I've been on Arimidex for a week now. I feel like I could cry for any reason but hopefully it will get better once my body adjusts to it. I've also been going to physical therapy and waiting for radiation simulation on 9/10. Oh yea, and waiting for this HAIR to grow back. lol. I think I will be happy when the bald spots are gone. I won't mind the short hair so much one it's a little fuller!
Good to hear some of you are back to work. I don't think I will be able to get back to work until December.
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Fab4mom, yes, I have to stop in a week since my surgery is on the 22nd. Just muscle and joint pain. I feel like an old lady in the mornings and after sitting down for a long time lol
And your hair looks great.
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I just started Tamoxifen on Sunday. How long did it take for the SEs to kick in? So far I don't feel anything.0
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About a week in for me.
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Thanks! I will see how the rest of the week and next week goes.
It will be tough to see since I get Kadcyla #4 next week as well. Sometimes I think I'm doing too much at once (Kadcyla, Rads, Tamoxifen) but, Rads is almost over and, I feel fine0 -
SE - I’m glad to hear the tamoxifen isn’t too bad, but ugh for the joint pains.
Ajminn - good luck with the students. I like the idea of hybrid, I wish my district would have tried it. They decided it was too hard for working families to have a hybrid schedule for childcare. I bet your hair isn’t too bad. Mine is still too thin for my liking, I hate that you can still see my scalp. I definitely still look like a cancer patient, not someone who decided to go for a shaved head.
Dysonsphere - so mood swings from Arimidex you think? I’m going to occupational therapy and I really like it, although I cut back now because of radiation. And I want my hair fuller too.
Mmorigan- you are handling all the treatments like a champ. I’m getting anxious to start everything, so I sort of wish that I could get it all going. But then again, I’m feeling really good, and I guess I appreciate that, and not overdoing for my body. Everyone reacts so differently to all the treatments.
I can see my skin getting darker from radiation. No pinkness yet, just more like a tan. And the skin is definitely tighter, but not painful.
E-learning day 4 is going a tiny bit better, but I really do miss having just a little bit of peace and quiet in my house.0 -
I took a long break from forums after chemo finished. I got my port out July 22 and am 5 weeks through radiation. My skin is red/brown but no blistering. A friend told me about a product called Lindi cooler roll (available on Amazon) gel sheets. I keep those in the refrigerator and put on for about 20 min after treatment which is soothing. Then apply Fruit of the earth 100% aloe a few times during the day and melagel or aquaphor before I go to bed. I started all that at the beginning before any visible effects. My RO said my skin looks better than most at this stage (even though I am fair), so my routine seems to be working so hopefully that helps someone.
I went to see an occupational therapist who specializes in lymphadema about exercises/stretches to keep range of motion during radiation and that was really helpful. I have had cording in my left arm since my surgery, so I wanted to do everything possible to keep from losing the range of motion that I have worked to get to. I also heard a breastcancer.org podcast about the benefits of acupuncture in helping side effects. I have been to a couple different doctors and found a good one who combines massage therapy with acupuncture (advantage of living in Dallas area). The treatments are relaxing and one treatment gave me immediate clearing of mild congestion.
I didn't sleep well during chemo, but am finally having a few continuous 6 hour nights and can then sleep a little longer after potty break
. Not sure if it is the fatigue from radiation, acupuncture working, or just things improving. I moved to an apartment by myself at the beginning of August because my husband wasn't very supportive and I was doing more to take care of him that he was for me. It's a little lonely at times with COVID keeping me working part-time from home and not seeing friends, but not an everyday downer like living at home was.
I will be starting some kind of hormone therapy in October, so am interested to hear your experiences.
Glad to hear everyone is making good progress on their journeys even though there have been some bumps along the way. Love the pictures of hair growing out. Mine is very short and very white but at least it covers my head now. If I was more tech savvy I would upload a picture
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