Lumpectomy Lounge....let's talk!
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Thanks all for the lovely birthday wishes!
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My MO and RO said no antioxidant supplements during rads either, because antioxidants mop up free radicals that damage cells—and the whole point of chemo and rads is to damage cells. Just as chemo drugs can’t target just the tumor cells and leave the healthy epithelials & hair follicles alone, antioxidants can’t protect just the healthy cells and ignore the tumor cells. But antioxidants taken as foods (e.g., fruits & veggies) are fine during adjuvant therapy because they’re not concentrated and are in doses too small to really interfere with cell-killing.
Michelle, I had the short protocol, except it was just 16 treatments—all hypofractionated (extra strength) and all aimed at just the tumor bed and a small surrounding margin. So basically it was like 16 boosts. I did not get fatigue, nausea, skin irritation, breakdown or blistering. I did get reddening, as well as tanning directly over the incision; and my tumor-cavity seroma swelled up with fibrosis over it and beneath the skin (painless). I actually had to go up a cup and band size! My LE therapist gave me a Swell Spot with instructions to wear it in a sleep/leisure bra at night; and my dermatologist prescribed a steroid ointment (triamcinolone) to be used 3 weeks on, 2 weeks off, for 3 cycles, and once a week for maintenance. The Swell Spot took about 3 months to shrink the seroma and start softening the fibrosis, and the ointment took a couple of months to soften it further and fade the redness to pink and eventually completely. Back in my pre-rads bra size, and haven’t had to wear a sleep bra since June.
My worst adverse reaction to rads was the stop at Hoosier Mama Pies (or a patisserie) en route home after each treatment. That packed on about 5 lbs., which I was able to lose just in time to start letrozole.
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Poodles, beautiful picture! & Happy birthday!
Thereisnodespair, yay, no chemo. How many rads do you have to do? I had minimal se, fatigue & itching but still very stressful. My RO had me use a cream only & hydrocortisone for itching. Was able to excercise to help combat fatigue. It was wearying, like having a second job. I had a calendar that I marked off each day. Just tried to push through & get it done.
Twinsmawmaw, welcome. Hope you heal quickly with no issues. Ice & excercises.
Peggy, I'm on a work trip in your old home state. I'm in Farmington hills.
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Sandy , hopefully my treatments will be boring and unremarkable. Looking at starting on October 6 and finishing Nov 2nd. Just want it over! How was your energy afterward? I want to have a good holiday season and birthday. Looking forward to 2017~ my lucky Irish number.
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Trish, damn! That is about 15 minutes from my old house. Now why couldn't you come to Spokane where I actually am? Hope the trip is going smoothly.
Michelle, you're in the right frame of mind now. Don't expect SEs, do what you can to prevent them. If they occur, deal with them like you've dealt with everything else to do with BC. All any of us can do.
HUGS!
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Michelle, three weeks after the end of rads I was on a plane to Rome and a Mediterranean cruise. I think that speaks to my energy level!
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Happy birthday Poodles 🎂🐩🎉🎈🎁 Okay I had to add the pink poodle because it makes me laugh. You look fantastic.
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Love the pink poodle, Molly. My old Standard Poodle was black, but I have a little Bichon-poodle mix who is white. I should dye him pink with beet juice!
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Hi, it has been one eventful yr since I was on here. Moved across the state to be nearer kids, new house to fix up, new jobs, new people, new places to see.
DS and DIL had our first grandbaby in Jan. DIL was dxed with thyroid cancer while pregnant. They let her go to term. A month later she had a 6 hr surgery and she had Her thyroid out along with 86 nodes -14 were cancer. She did radioactive Iodine treatments. Her and baby are doing fine. It has been great being a gramma.
Dr took me off Tamoxifen in April and I did Arimedex til Sept 1. I hurt so badly on that med. I am not on any cancer drug right now.i know I need to be but scared to try another one.I was put on Effexor 3 yrs ago for hot flashes, i also went off that. It is not easy to go off of! I am enjoying finding myself again. I am not so achey and tired. Funny how side effects come on so slowly we just adapt.
I am currently waiting for genetic tests to come back. I was tested for Braca 1 and 2 and was negative 3 yrs ago, but this new panel is available now which wasn't 3 yrs ago. I have 21 first and 2nd degree relatives who have had or have cancer so I am anxious to see if there is a genetic link. I so hate waiting! Anyone else have these tests ran? I really wonder what they do if a link is found? They are testing 25 diff genes.
I also had a new IV treatment in Aug to keep cancer out of my bones. Its a new study that says the drug Zometa will work for that as well as for osteoporosis, which I do not have. It is an infusion and it was like having the flu for 5 days after. Plus I got mouth sores. MO wants me to do this 2 times a yr for 3 yr.
I am playing catch up on all the reading and hope to keep in touch better. Ty for the welcome Peggy. I hope you are doing well? How is hubby?
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B"H
Sandy - "three weeks after the end of rads I was on a plane to Rome and a Mediterranean cruise." - want to give me just a drop of your powerhouse energy - you are amazing, hard for me to keep up with all you are and have done professionally etc. Hoping you will always have such energy and spirit! Wow!
tbalding - thanks for the encouragement. not quite sure how many rad treatments i have to do, the RO mumbles something about 30+ ... it will be okay - I have all you here "cheering me on" !!!!!
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ndgrrl, I had the Zometa too, and I had the faux-flu and some temporary neuropathy but no mouth sores. Took five tries to get the I.V. started. Never doing that again—if I have to dip into my IRA for Prolia shots instead, I will.
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Peggy, thanks for sharing your positive energy. If being a volleyball player and junior Olympic coach taught me anything, it is "I've got this and it's my ball". Natasha Bedingfield sings, "no one else can feel it for you" and I keep that in mind.
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ndgrrl, I was tested for the gene panel and it turns out we have a mutation called Chek2. My sister and daughter both have it too. Sorry about your DIL cancer but congratulations on your grandbaby. Being a grandma is the best job ever. ❤️❤️
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NDGrl, What a wild year you've had. Congrats on becoming a grandma. Relieved that your DIL is doing so well. My husband's brother had thyroid cancer 10-15 years ago. I didn't then know the questions to ask but I do know he's doing fine. My husband passed away a year ago and, like you, I've made major life changes. I sold my house in Michigan and moved to Spokane in June to be near my youngest son. I'm still whipping the house into shape and putting my totally lacking decorating skills on display. But I'm very happy.
BTW, many ladies find that changing to one of the other AIs makes a huge difference. So you might give them a try. You can always quit if they cause SEs. Do consider it. Good luck with the genetic testing. It is scary but having answers can be good.
Michelle, you're welcome. I have very strong rose-colored glasses
and it works for me. Glad it works for you too. You definitely "have got this"!!!!HUGS!
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Hi everyone... been watching, but still waiting on the 3rd for my onco test... has anyone had problems with having your arms over your head? I've tried that position and it looks like my arm goes out... i can do the rads, not sure about positions...
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Judy, keep stretching your arm! It will be going over your head for 10 minutes. It's not terribly uncomfortable for either arm but if your underarm is still a bit tight it will be. I find that even now I need to stretch it regularly. Weird, isn't it? Fingers crossed that the Oncotype score is FANTASTIC!!!
HUGS!
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Thanks Peggy, The arm I had the surgery on is ok, it's the opposite one, but still going for getting it in shape before I need it
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Sister and i are staying in a tiny "Bavarian"town in the Cascade mountains listening to an 80 yr old man give a 9am alphorn concert while standing on a 2ft ledge on the 4th floor of our hotel.
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Here is a tip that I learned about the Oncotype test, the lab called me first to let me know they were running the test and that I could call anytime for an update. With my usual controlled manner, I contacted them 3 to 4 times on the progress of my test. I told them I was in a holding pattern for radiation. They received my sample on a Monday and had my results back to my doctor on Friday. It does not take 14 or 10 days to complete the tests.
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I just found this site about Lymphedema, it also has a store that sells the medic alert bracelets just for Lymphedema. Remember it only takes one removed lymph node to make you likely to get it if you are not careful.
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Judy, that's weird that it's your opposite arm. However, I think that sometimes things get screwed up with the muscles from our surgery.
Poodles, my DIL goes to Leavenworth regularly for scrapbooking retreats. She loves it! In Michigan we had Frankenmuth, about 1-1/4 hours from my home there. I love that guy playing the alphorn. I wouldn't be standing where he is! I've never heard a concert by one so I'll bet it is interesting. Have FUN!!!!
HUGS!
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I know what you mean, Peggy. That ledge is only 6" wide. Yike!
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Poodles, Oh sh*t! That's a definite no-go for me. I'm not fond of heights either. HAHA
HUGS!
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Peggy, I am so sorry about hubby. Hugs. So many changes for you. How are you liking the new town. We spent the night near Spokane in July on our way to Seattle to board a ship to go to Alaska. Thanks for the pick me up about another cancer drug. I knowI should not drag my feet but I just felt sooo rotten on Arimidex and it really messed with my Dream trip to Alaska. I couldn't walk much, i was short of breath. I caught a virus which turned into pneumonia. I had a seaweed wrap and massage on ship. I am allergic to seaweed, I didn't know seaweed was full of it!! Then night of massage I woke with my hands numb, one still is. Mon had MRI for hands as PT, acupuncture and chyropractor did not work..I also had lung function tests ran as my lungs still are not normal. 2 inhalers for me. Blaaa. i have noooo luck!!!We are sooo out of our elements in the cities.
Molly, what do they do for you when they find a defective gene? I am nervous
Sandy, 5 tries for iv is horrible. I am a hard IV start so I ask for certain nurses. They hot pack me and I drink and drink. My mo told me if they try 3 times with no luck he would have reason to give me an injection so my insurance would pay. My feet also did hurt. I felt like I walked on rocks with bare feet. I also got so down, and weepy and tired after the flu like symptoms left. I also got a bad headache starting during the infusion.That is one crazy drug. Did you have to get a dentist release to start it?
I am happy to see this thread is still so active and encouraging. I am sorry to see all the new gals who have had to join us.
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ndgrrl, I was supposed to go to genetic counseling after but didn't go. Basically they recommended I go ahead and have my remaining breast removed to lower my risk. I don't know all that needs to be done yet because I need my doctor to refer me to a good geneticist not some random person. My daughter is supposed to start having annual MRI's and my sister had a PBMX. No sign of cancer in her pathology thankfully.
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poodles... Are you in Leavenworth??
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NDGrrl, Thank you. I'm really doing well. DH was so sick, especially the last month of his life, and he had been ready to let go for sometime, so it was a blessing. I love Spokane and being near my youngest son and his wife (5 minutes).
What a rotten trip you had. It sounds like quite a few things were going on. You sure found out about the seaweed allergy in the worst way. Ugh. Do try the other AIs. Also keep in mind that you could be allergic to the fillers in the Arimidex (generic?) you took - those can be terrible too. If fillers are the problem, then the Teva generic or even the brand name can help. But I wouldn't blame you for not trying again. Give Femara or Aromasin a try. I think it is worth it but only you can decide that.
HUGS!
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Molly and ndgrrl, I did go to the genetic counseling after I received my results. I had no mutations, but it was interesting that the geneticist did a whole workup even for my daughter and put it into the report. With my genetic history, my daughter has about 3X the risk of bc than the average woman and was recommended that she start getting mammograms at age 35. He documented all my genetics so it would be easier to get insurance coverage for the tests. I guess because I had no mutations, it was primarily about my daughter and granddaughter. He said my son would have no additional risk of bc or prostate cancer.
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Poodles, I love Leavenworth! When we lived in Seattle we always stopped there on our way back from Eastern WA. Never been to Poulsbo (though we did drive a lot on the Kitsap Peninsula and along Hood Canal—and I went to law school in Tacoma). ndgrrl, I didn’t need a formal release from my dentist, just a warning not to have any invasive dental work (extractions, deep root planing, root canal, etc.) w/in 2 months before & after infusion. Same warning applies to Prolia shots.
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OMG.. I'm on the plane for first trip post op with my lovely lymphedema. I'm compressed and ready to go! Up, up, and away! 🛩🛩🛩🛩
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