Starting Chemo September 2015; join us!
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Luzeelu - i need to buy a sleeve (gulp) PT recommended this, it's a 1 piece. Hopefully I'll be ok w/o a sleeve right now. So far so good, but i am definitely paying attention and babying it. The cool sleeve I posted is from https://www.lymphedivas.com/en/shop/sweet-pea. They have cool designs.
Tkemp - rads is not as bad. I still have 8 more to go and I can see the pinkness of a sunburn from the bolus coming through. I have soreness in the armpit as well. My Ro said to used aquaphor on my arm pit at night (thicker cream) and refrigerated aloe in the afternoon to take the edge off. Also to GO BRA-LESS LOL!
I asked her about the scar where my nipple was because it was darker. She said that was to be expected and it's due to the skin being a different texture in the nipple area and it should fade after rads. My skin looks good and my neck looks great. Overall she's pleased with the way my skin has held up. I have no blistering or peeling yet (if i did they would discontinue the bolus).
I'm spoiled I work 10 min from a tram that takes me to OHSU to get rads. And yes it's free for patients
Quick walk and a nice view and I'm at my apt. After chemo I was still battling the "itch" but got on lyrica. As for other symptoms I was ok and just felt tired. I got to skip my last nuelasta so I avoided the muscle and bone pain associated with that. I made a deal with hubby to drink this yucky green veg juice that had 50% iron per serving. It seem to work, lots of people got sick at my work over the course of chemo and right after and I'm still healthy. I worked during chemo and rads full time. The time between chemo and rads felt like limbo. We tried to think of stuff we could do to be proactive like I got back on Tamoxifen for a short while before rads. I did stop on rads to minimize side effects from radiation.
I ended chemo on 12/31/15 and started rads on 1/27/16. so a little over 3 weeks. I kept my port for a trial I am signing up for. So not much happened between the chemo and rads apts.
I lay on my back for rads. I have small b/c cups reconstruction. I guess it depends on how blessed you are. Also I bet on your stomach he can avoid hitting other places/organs/skin. Are you getting boosts? another woman i talk to during my apts has had a lumpectomy and she's getting boosts as well. Ever RO has a different opinion I'm sure but I am curious. I asked for boosts for extra insurance of getting all the cancer cells remaining but I cannot due to reconstruction.
As for tats i have 3 little freckles and some of the RN's even comment on how good of a job they did on them.
They line up the tats every apt and shuffle the table around and finally have me breath into the snorkel (breath hold machine). I only have that because it's on my left side and the machine can help the radiation stay away from my heart.My physical therapist is lymphedema certified and she recommends I wear a sleeve during rads, even though I'm almost done. She also wants me to wear one if I am somewhere where i will be more immobile like a car or a plane or if I get sick. I guess everyone is different with this.
Lupron shots were for shutting down the ovaries. I'm 37 and we read on another forum about the shots. My estrogen was tested during egg harvesting and it was pretty high. So we wanted lupron shots to starve the cancer during chemo.
never nosey ask away
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mLisa good to hear from you. Keep resting and icing.
Tkemp I worked during both my lumpectomy, reexcision , and was on an loa from work during chemo. I went back to work 2 weeks into rads. I drove an hour to rads, and hour to work, worked my 9 hr day then drove and hour home. I was tired but glad to be kept busy at work. I think it helped rads pass quickly.
As for rads itself I had 25 whole breast and 5 boosts. My tumor/scar was on the underside of my 40dd left breast and almost on my chest wall. I had rads on my backs and had the active breathing. I did burn/peel pretty bad under my breast and a bit at my sentinel site under my arm pit. I used coloplast cream that my hospital provided and silvadine cream to help ease my burns/peeling skin. I also did saline soaks daily. No aquafor here as it made my skin peel worse. Hope this helps let you.
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today was my last radiation treatment and it was an emotional day. I was delayed an hour and a half because the computers in the rad wing were down and they had techs working on it. Figured the day I want to be done the most would be delayed. It was good that I waited though because I got to talk to a lot of the women waiting. Normally we are all rushed trying to get to and from treatment.
My sisters did come with and I got to celebrate with them. I got to finally ring the bell I was yearning to ring and got huge hugs from my rad team. They were great all thru my treatment and I really bonded with them. I made them sinfully delicious vanilla cupcakes and they loved them. We took pictures and I was crying like a baby. It really got to me that I am done active treatment. I told them that they brought me back to life with their daily encouragement. I especially bonded with my head tech who recommended me for a free program called unite for her which provides free support service such as yoga, acupuncture, reiki, counseling, and massage.
I will say that today I feel proud of myself that I made it thru. I can't believe how much my life has changed in the 10 months since dx. I am a new old me. I look different with short mouse grey hair and am 25 lbs lighter down 2 dress sizes. I look into the mirror and don't see that sad chemo sick person that looked and felt like a monster. I know I was there inside because I always smiled thru the teary reflection in the mirror and saw me. Now I smile back and know I am better because I feel better now. Hope you ladies feel better too. Here's to a healthy and happy year for us al
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ElTigre, that sleeve is very similar to the ones I wear during the day. I've been ordering from www.compressionguru.com and they have been very good about returns as well. I had ordered a couple of things that didn't work out. I did try a plain Lymphedivas sleeve but the size wasn't quite right. Also, their products must be machine washed and dried, so that's a problem for me. I don't have to do laundry too often so it's nice to be able to hand wash the sleeves. I might get one of their patterned ones someday, but Juzo also makes pattern sleeves. I just ordered one of their sleeves to try it out. Have been using the Jobst brand.
These lymphedema supplies are very expensive. I don't know whether some insurance policies cover the cost, but Medicare doesn't. Makes no sense!
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congrats Shopgirl! I know I'll cry on my last treatment too. No bell at my place but there's definitely a great bond with the nurses and techs. That's awesome of you to make them cupcakes!
I spoke to one woman who had her last day on my first day. Hope that makes sense. ..lol
I just met her but we both felt close having to go through this. We hugged and wished each other well. I could see the tears coming. She walked out happy and proud.
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Luzeelu oh thanks. Yeah some sites or stores are no returns. I'll have to check that out. Juzo nice! I haven't ordered yet. Expensive yes they are. I'm on high deductible so out of pocket until I hit my deductible. Sigh. ..
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Yay Shopgirl....great that you're done....life is definitely different and now that you're done the active treatment, it will take some getting used to having some free time again. Its been a week for me and I'm still spinning my wheels, trying to figure out where I should be. Very strange but in a good way.
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congrats on finishing Shopgal! Yay for ringing the bell!
Octogirl
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thanks ElTigre & Lindy yes I don't know what it will be like if I'm not flashing my boob at 8 in the morning. It will be nice not to put on a hospital gown for awhile.
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El Tigre and luuzeluu, do you have lymphedema or are you using the sleeve to try not to get it? Getting it is my biggest fear and I don't even know what to ask for or which Dr to ask. I'm only 3 weeks out from surgery and not cleared for exercises yet. Thanks for any info you have!
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As part of my surgery package, I was given the sleeve. I don't have lymphodema but am told to wear it at high altitudes like if I fly.
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Shopgal - Congratulations! Your words are very inspirational for me (I'll start 6 wks rads some time in March). It's a tough journey, but we can come out better for it on the other side.
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mom2boo - like Artista i'm buying a sleeve to prevent it. They stole all of my left arm pit nodes and I'm doing rads so i'm at high risk
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Arista, thanks I should do the same. El Tigre I lost my armpit nodes and will be getting rads and no one has talked to me about being high risk but I do have an appointment with the RO today so I'll ask. Thanks! I'd rather work at prevention than management.
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Mom2boo, I started developing lymphedema about 3 months after surgery. Supposedly we started dealing with it early enough that it will be manageable. As soon as the MO looked at my arm, she immediately set me up with the PT. I had to wear the bulky bandage night & day for nearly 3 weeks before I was cleared to start wearing a sleeve. I was told to wear a sleeve during the day and nothing at night, which was such a relief! Now that I'm on rads, however, I'm supposed to wear this CircAid wrap thing I got at night as well. It's a lot easier than the bandage routine but still a pain in the you-know-what. Supposedly, eventually, I may get to the point where I don't have to wear anything at all unless it flares up, but that's down the road.
Just another example of the BS that tags along with BC!
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In my lymphedema class they said the chances for it increase the older you get if not for anything else, things loosen up as we get older. Like how you see more vericose veins as you get older.
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Thanks everyone! I'm definitely keeping an eye out. I saw the RO today and she said it will start most likely in fingers and wrist but can also be in the armpit and back. My bad news is that the PS didn't like how the incision on the effected side is not healing well so I have to go back to surgery tomorrow for him to do a quick revision and cut that part out. He says it only takes 15 - 20 minutes but I still have to go through all the steps and go under anesthesia. I'm upset but watching the wound it;s not unexpected. Wish me luck and I hope I don't puke all over the place afterwards!
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Hello beautiful warriors! Im just checking in.... I'm very glad to see everyone's progress.
I had double mastectomy surgery 2 weeks ago, feeling good with the occasional pain like tingling. I met with my MO today and I will be having 30 rads treatments.
Hair is coming in, nails are looking healthier and over all feeling good, I'm 9 weeks post chemo.
Please share your experiences with rads to give me an insight of what I'm in for! (nothing can be worst than chemo)
Im not always here but I enjoy your stories and the connection we have with one another. Life is precious and I see it differently now!
love,light and hugs to all of you! Keep the fight and lets stay strong!
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mom2B&B - Bummer on the need for another surgery, no matter how minor. I share your tendency toward nausea - had an attack during recovery Tuesday.
The nurse said a cold compress and smelling alcohol pads might help. I was skeptical (I felt *so* close to upchucking), but tried them and they worked. Give those a shot if you're pukey afterwards. Good luck with the procedure Friday!
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@CarolinaAmy - The radiation doc said that under very optimal conditions they don't force everybody who gets a lumpectomy to go through radiation. But you have the meet certain criteria - i.e. Be a stage 0 or 1 DCIS and have a very ER positive cancer; also, be older than 70. At my age, with estrogen receptors in the 30s, BRCA 1+, and stage 2 invasive cancer at 4.5 cm... My docs were treating me like I had triple negative cancer. So obviously there was no chance of them letting me out of radiation, but a girl can hope. Denial ain't just a river in Egypt.
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Hi all - I'm identifying so much with what you all are talking about. Especially your post, Shopgirl!!
I'm 4 weeks post surgery (ALND and BMX) and starting to feel better. I'm back in the office part time.
I have my radiation simulation tomorrow morning so that should be interesting.
I'll be flying for the first time next weekend and I'm wondering if I should get/wear a lymphedema sleeve on the flight? Do you need to wear it to prevent a problem or just if you're having a problem? I have no idea. I'm frustrated because I called the lymphedema specialist I met with before surgery last Thursday and have yet to receive a call back! I called him again today and left a message. Wondering if I should just get one just in case?
Met with my MO this morning - frustrating meeting. What no one really wants to say is that it turns out that my doctors are not very happy with my response to the neoadjuvent chemo (TCHP) since malignant cells were still found in 2 lymph nodes after surgery. I guess many people get a full response. Those two nodes (along with 19 others) have been removed. We can't know what/how much was there before chemo (if the chemo killed some but not all...or if it didn't do much). Makes me very frustrated to not be able to have answers to things like that. Since my cancer is unusual(triple positive and an occult primary) I couldn't even get my MO to have a conversation with me about future risk of recurrence. I was basically told that we are doing all the treatments we should according to the latest research and I should just go home, forget about it and live my life.
I was asking several questions trying to better understand the pathology report and she said something to me like, "you're in remission, ok?" Said to me in a frustrated way. I told her that was the first time anyone has said anything like that about my situation and got emotional. No one has said anything positive. I think all I've been wanting is someone to say something positive. And even said that way it felt like a punishing statement not a celebratory statement.
Anyway - I start my first Herceptin only infusion on Saturday, I'm still healing from my surgery and I should start radiation in 2-3 weeks. I'm super envious of those of your who are near to or have finished radiation!
Today has been a really hard day...
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edwsmom - Big sympathy for providers who do not have an encouraging word (been there). Hang in there. You're going to make it.
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Edwsmom I'm so sorry you had a tough day. Anyone would be frustrated with that conversation! Try asking your radiation oncologist tomorrow at your appointment, he or she may be able to give you different information based on where they are targeting. I saw my radiation oncologist today and even with a good response she is still targeting the whole breast, where the tumor was, where the axillary lymph nodes were and the lymph nodes in the neck.
Good luck!
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edwsmom, massive ((((hugs)))) for having such an unsympathetic MO. Not knowing is so frightening. Oncologists should understand that and show more compassion!
And I feel your pain --- When I got a phonecall with mine Tuesday about a growing lump on my toe, asking if she'd look at it and say if it looked like a met, she laughed at me and said "we oncologists don't do any diagnostics --- go to a generalist or surgeon, and call us about it only if your path shows more cancer." (Still not clear what's going on there, but luckily imaging yesterday afternoon showed no clear tumor). I'm afraid that everything new and odd in my body turns on the Mets Alert! sirens in my brain
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mom2 sorry you have to have another surgery
Edwsmom oh no for positive nodes. That sucks. Big hugs to you. I swear sometimes docs need a lesson on what not to say to us.
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Thanks for the support everyone......
I had my appointment for my radiation simulation today, but they couldn't do it. I have to try again. I'm 4 weeks post surgery and I couldn't raise my arm up high enough to be in the right position for the ct scan.
Very disappointing. They want to give it 2 weeks for me to heal some more and try again
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edswmom, I'm sorry you weren't able to do the sim. I'm worried about having the same problem but I've got a couple weeks to get there. My bs gave me some exercises to do so hopefully they will help. I'm not close right now. 😟
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Edwsmom - How disappointing. : (
We all focus so hard on getting that next treatment started (and then completing it). Rest and feel better - you'll start rads before you know it. <<<gentlehugs>>>
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Edwsmom, I'm in the same place. I'm just over 3 weeks out and can't hold both arms over my head yet. Since I had to have a little more surgery on the affected side my Radiation oncologist wants me to schedule my sim around 3/7 so I can start rads on 3/21. I hope I can make those dates. No one has given me exercises to do yet, my PS wants the drains out first. I am getting back range of motion just by doing little things around the house and getting washed and dressed. Good luck!
Twiggy same to you, I hope you have the range of motion when you need it.
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