Starting Radiation April 2017
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I'm going to join in here even though my first treatment is May 1. Now I'm off to read previous posts
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I just completed my thirteenth treatment--only 17 to go! Just now starting to notice a little pink-ish (and somewhat itchy) rash mostly over my clavicle, and what feels like mild sunburn on my upper back. My RO said he can prescribe something if it gets too itchy. But all in all, feeling pretty good. I tend to worry about lymphedema since they are zapping my lymph nodes as well. I am able to get out and walk along the beautiful coastline several times a week. The other day an otter came out of the water and ran across the trail in front of us. This helps immensely, not only physically, but mentally.
So far I have been tolerating the long drive each day (one and a half hours each way!) by listening to my Pimsleur Italian CD's. Makes the time go faster. A trip to Italy is going to happen, come hell or high water.0 -
Thanks, BravePoint. It's been a long road for you as well. I found my lump on 4/30/16, but didn't get my diagnosis until 5/20/16. I wish I could have held on for the mapping, but worry the twisted positioning for 15 sessions would be horrible for my back so still hopeful the RO can find a creative way to do prone positioning.
Connie, you FINALLY get to move on to rads. Wahoo!
Siciliana, a trip to Italy. What a wonderful goal!
Lyn
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Connie - Great to see you here!!
VLH - I'm sure your RO will come up with something you can tolerate physically. I meet with my RO every Friday. She told me yesterday that she's still trying to figure out what is the best way to do my boost to the tumor site as the skin is so thin there...... She's got a month to figure that out!
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Hi Scaredashell - I'm having problems with my arm/shoulder too. I posted about it earlier on this thread. My arm on the side being treated kept going completely numb during the mapping session - like happens when you fall asleep with your hand over your head and wake up with a dead arm. I have a restricted shoulder for years so I'm not used to having my arm in such an extreme position. I phoned the RT about it and she said they will try to make me more comfortable when I start next Tuesday but they won't be able to move my shoulder position too much as the planning has been done based on the position they scanned me in. My advice would be to emphasize your shoulder difficulties at the mapping session. I don't think having the arm out to the side is the problem as much as the rotation of the shoulder joint caused by having the hand at the back of the head. I'm going to see if having my hand a little higher at the back helps.
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Elizabeth7 - I have found that I'm not having to hold my arm above my head as long at the radiation treatments as I did at the mapping session other than my first appointment where they took Xrays first. I hope that is your experience as well!
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Bdagirl and letsgogolf, I had the same smell and I had DBMX so no boob for me. I just started putting my deodorant in that area and I didn't notice it as much. I made sure I washed it off before my treatments.
Lyn, I hope your RO can come up with a better position for you. It may only be 10 mins or so but when your in pain it seems like a lifetime. The clinic I went to also had arm rests and made sure I was comfortable but I don't have the shoulder issues you have.
Waving hello to everyone
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Hello everyone - just had 2/20 and now the weekend. I had mastectomy direct to implant on 3/13/17 and greatly disappointed by positive deep margin requiring radiation. Hoping my brand new implant isn't destroyed by rads. Anyone have experience with that? Silicone, too. The lit I've read all suggests bad news for the implant. Finished 18 weeks of chemo 2/10, and was so exhausted I looked forward to surgery as a chance to rest (still working full time) is rads as exhausting as chemo?
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Siciliana, we are at the same point 13 done with 17 to go. We are also planning to go to Italy as soon as possible. My son is studying at University of Bologna and we thought we go as soon as we could but looks like he's coming home for a bit. So the latest plan is Sicily in September. Where will you go?
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Sorella, I figured you might be Italian by your name! I was hoping to go in the fall, but we'll see if I can save enough money to make it happen. If not in the fall, then next spring for sure! This BC thing put a damper on my plans. I was thinking of going back to Sicily too. I spent a couple of weeks there three years ago and loved it. I would like to see more of the island this time. I stayed in a very old hotel in Ortigia and walked my legs off! I enjoyed shopping at the daily market in Siracusa. The vendors shouting "Prego, prego, prego!" Took the train to Taormina and Mount Etna was erupting periodically about every 20 minutes. I was so excited to see that, but the other people on the train (the locals) were used to seeing it erupt. I would also like to see more of Tuscany (spent four weeks in Montepulciano last time) and maybe make my way to Umbria. Italy is such a beautiful place and the food was incredible. I was in Italy for seven weeks, and really didn't want to come home! Mi piace molto l'italia! Vorrei ritornare prima possibile.
Cosa sta studiando suo figlio all'universita?0 -
Lightenupandlaugh, I had implants at the time of my diagnosis and was told the same as you but my implants were 28 years old. I opted for TEs then exchange to implants 6 months after radiation so exchange around Oct/Nov 2017. Hopefully they were just giving you a heads up on how things might turn out but praying your implants get through radiation with flying colors. We both have Papillary diagnosis, I'm told only 3% of BC patients have that. Very rare but not sure how true that is as I didn't do any research on it... yet. Maybe once I'm through everything I'll take a closer look.
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Siciliana, Funny my name does seem like it could be Italian. Actally it's my Hebrew name but I am married to a very Italian man. We have been traveling in Greece and Italy since we met 43 years ago. My son is studying for his masters in Italianistica which is something between Italian history, culture, linguistics and literature from what I understand. I am really eager to learn Italian. We loved Umbria! We have been to many places in Italy but never Sicilia and are so eager to go. Yeah this BC thing really does a job on us. As soon as we can, travel it is, come hell or high water!
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Sorella means "sister" in Italian, as you may know. But how appropriate to have that name on this forum! How wonderful that your son is able to study in Bologna. That's another city I'd like to visit on my next trip. There is just so much to see in Italy.
Since we're on the same rad schedule, I'd be interested in knowing how your skin is faring so far. Mine has just started to turn red and rashy and now quite itchy over the clavicle (zapping the nodes there) and on the upper back. I am using Miaderm, but the itching is getting worse.0 -
hey letsgogolf - I found out where mine is coming from....its from the crease under the breast. I've been putting some coconut oil on it and that seems to be helping.
I was grateful for this weekend off as was noticing redness under the boob, along the ribs and up along the armpit / back. And a very sore nipple!! Ouch!!!
Hope this is a good week for all of you ladies!
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Siciliana, Yes, sorelle is sister, sibling (also means nun). Crazy but hadn't thought how apropos it is for we sisters! My skin seemed to start it's side effects just after my doc visit Thursday when all were cheering at how little side effects I was experiencing. I have slight bums on my stomach but not my breast though it is pink. I feel itchy and all bra backs really bother me. I also have needle pain now and again in areas getting rads. So sorry you have such a long drive but glad your Italian is keeping you company. Good luck to all you sisters out there!
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Sorelle - I'm getting needle pain as well. That's a good way to describe it. I have 7 treatments more to go. So far no redness yet. I keep slathering on my coconut oil. I stopped wearing bras when I began treatment and wear cotton camis. I find them more comfortable. I'm small so I can get away with wearing them. I also bought a few button down blouses that are very soft and comfortable. They look ok with leggings etc. easy to get them off and on. Right now I'm all about comfort.
Gentle hugs to all on this Monday morning. Sending comfort and love,
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Woo Hoo! My second attempt at mapping went far more smoothly than the debut effort. I spoke with the doctor before going into the CT room and asked whether it would be acceptable to bend my arms with my hands supporting my face under my forehead. (I wanted prone position to protect my heart and lungs.) I'd experimented a bit at home with positions that I could hold fairly comfortably. Luckily, that position as well as a little extra pain medication on board did the trick. The radiation technician thought the arms needed to be stretched out straight and that was excruciating. I discovered the Ativan left over from chemo wasn't ideal for my claustrophobia, but my face wasn't inches from the inside of the machine so I was able to hang on for the few minutes that the scan was active. Hmmm, I've been bumped into a May start date. On to my rehearsal!
Lightenup, I hope your implant can survive the radiation. You must be very disappointed to find radiation is needed.
BdaGal, the sore nipple sounds so ouchy! I'm far too buxom to go braless so hope I'll be able to tolerate my cotton Fruit of the Loom sports bras throughout treatment.
Lyn
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VLH - Great news!! I'm glad that you were able to get through the CT sim. When will you start rads? I had #5 of 29 this afternoon. So far just extremely tired....
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Five done...you're well on your way, Bravepoint. Assuming all goes well with my rehearsal later this week, I'll start next Monday, 5/1.
Get some rest!
Lyn
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Butterfly1234, So glad you are nearing the end. Comfort is the way to go! Unfortunately, because of post surgical pain (since sept 26th) and a big bust, I need the bra at times to counter pain. I change 3 times or more a day just to find something more comfortable. The changes help some. I was going to a PT who was helping with massage but that had to go on hold till after radiation. Acupuncture was also helpful through chemo and am thinking I will go back. When my husband asks me what the discomfort is like, my answer is, "My body feels like it's been radiated," no sarcasm intended!
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Just joining this group.... 1 of 20 today. So... I have a question. My breast burns as if I have a mild sunburn already!!! Did this happen to anyone? No redness... just a sunburn feeling!
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Sorella - sending positive thoughts that you can find comfort and get some rest. Take good care of yourself anyway you can. Blessings.
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Lyn, we start the same day. Between radiation and therapy for my compression fracture, I feel like I'm going to be living around my medical calendar. How many treatments do you have? I have 32 finishing June 14. I have 4 days off over Memorial Day
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started my treatment April 20. Had my third today and feel so exhausted. More so than chemo. Is this normal?
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scaredashell - i too am exhausted after just 5 treatments. Maybe not more than chemo but close. I had been feeling really good in my month break and didn't expect the fatigue to hit so fast!
6cats - I haven't experienced any burning or rednesss yet after 5 rads. I've been slathering myself with Glaxal base cream front and back 3 times a day!
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Lightenup, I understand completely how you feel to hear radiation is needed. My BS read my path report wrong and told me several times that chemo nor radiation would be needed. Once I was told that I had to have chemo and radiation i was very angry at my BS. I talked to her about it after my MO and RO gave me a copy of my path report with the results showing why chemo and rads were needed highlighted, she tried to tell me she was missing that page. Really! Hang in there you can do this! In your pocket! 🤗
Scaredashell, it's very normal. I was more exhausted from radiation than I was from chemo.
Sorella, I'm sending some gentle healing hugs your way 🤗
6cats, welcome to the group. I had the sunburn feeling but no redness from day 1 also. I didn't have any skin changes until my 5th week. Hang in there you got this 😊
Connie, I know the feeling of life revolving around your medical calendar, it's a lot to take in. I'm just looking forward to being on the other side of all aspects of BC. Well at least past all the daily and weekly appointments anyway. I can handle every 3 months, then every 6 months etc hang in there.
Lyn, yay! You made it thru your CT sim! My arms were bent for my CT scan. I wonder what your technician was thinking? 🤔
Butterfly, I'm with you on the no bra idea. My ribs are way to sore from my TEs to even think about wrapping anything around them. Just a few more months then I'll get my exchange surgery to my squishies. I'm just thrilled I can swim this summer!
Gentle hugs and blessings to everyone especially anyone I may have missed 🤗
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I'm so someone else has experienced that "sunburn feeling"! Thanks WenchLori!
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hi ladies - walked into treatment today saying, 'I'd like a special music request today, please...Bon Jovi's 'Livin on a Prayer' cuz I'm halfway there! ' lol.
Today was day 9....I have some pinkness but not too bad still. I have been getting discomfort thru my whole right arm though - it keeps going numb. Weird. I haven't been overly fatigued though I did feel super tired yesterday evening....didn't want to go to sleep too early so I just went to bed at normal time (10:30)....and then woke up by 4. This not sleeping all night is for the birds!! I miss my own bed in my own house with my blackout blinds!
VLH - glad your second mapping attempt was ok! Hope your treatment goes smoothly too. Are you lying on your belly?
6cats - I had an achy sort of feeling right from day 1....and yes it kinda looks and feels like sunburn. You can feel the heat coming from your breast.
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Bdgal - I also have some occasional achiness and numbness in my arm but I had that prior to rads. I'm wondering if it's a combo of arms overhead during treatment and starting yoga. I don't have any redness but I do have pinprick sensations that also come and go. So far, ive been really fortunate with the SEs. I'm walking and doing yoga which helps with fatigue. I've had worse insomnia since my Dx. Not sure what to do about that. I'm trying breathing excercises and mentally relaxing each part of the body. That helps. But, I never sleep through the night without waking up at least once. I can't seem to find a comfortable sleeping position. 6 more to go!
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I had my mapping yesterday and I have something (dry run?) on Friday and then I start Monday. I'm pretty nervous. I was offered the option of the "traditional" six weeks or 3 1/2 weeks with a higher dose each time. For the shorter period, the RO said they have only completed studies in women over 40 and only for IDC. I had DCIS with microinvasion (less than 1 mm invasive) and I am 34. But she seemed pretty confident that there shouldn't be any difference based on my age or DCIS vs IDC...so I'm going with it. Is that stupid? The study with DCIS will come out in 5-10 years - she said they always study IDC first and then repeat the study for DCIS and there usually isn't a difference. As for the age, they just don't often have enough younger women in the studies to include them.
Is anyone here doing a shorter radiation period? Would you do it if you knew the studies didn't precisely match your diagnosis/demographics? Is it stupid to trust the RO's confidence that 3.5 weeks will be enough?0
