Lumpectomy Lounge....let's talk!
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I've been on Letrozole since 3/2016. I too have psoriatic in mt hands and feet, plus osteoarthritis in my knees. Its hard to know whether I have increased pain in my knees because they are bone on bone or caused by the AI. I desperately need at least one knee replacement. I can tell that my hands are stiffer and my fingers are more disfigured and sausage-like. However, that's probably advancement of the PsA. I'm dropping things a lot, due to loss of grip strength.
I guess the worst SEs are poor concentration and severe short term memory loss. My new MO believes that is at least partly due to the Letrozole. Even so, I'm loathe to change AIs because I'm afraid of worse SEs.
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Hi lumpies, I am very far behind. Poodles, glad you found a new MO in your group. Radmom, genetic testing for at least 26 genes not just brca is better. I have been staying away because I am depressed and just need to focus on something other than cancer but I miss you all so wanted to check in. Sandy, if you come to LA we need a gathering. Maybe Sloan would drive down.
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We've missed you Molly. Sorry to hear you're depressed. I think that's part and parcel of both cancer and parenting a child with specus needs. This is the time to make sure YOUR needs are met.
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Molly, keeping you in my thoughts and prayers. I'm sorry it has been so hard for you. Remember we are here for you and to help you find something positive to hang onto. Loads of love heading your way.
HUGS!
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Thank you, Peggy and Poodles.
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Molly, glad you checked in. Sending prayers and positive vibes to you.
Sorry for those of you that still have se's. I'm still struggling with tiredness but nothing else major, but could be from the big swings in the weather that we keep having. Hang in there.
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L.A. gals, I’m hoping the music awards banquet will be moved to July 1 from Apr. 29 (the organizer suggested there may be a lot of schedule conflicts in April among the nominees), because we just got an offer for a 15-day Viking Ocean Cruise starting Easter Sunday in Barcelona, then sailing to Granada, Seville, Lisbon, Oporto, Santiago de Compostela, Cherbourg, Paris, London, Haugesund and disembarking in Bergen, Norway. It’s the only sailing this year, and something is telling me to get our annual European trip done before my next mammo & BS visit in August. I would leave for London a week earlier for a CLE trip (including a Seder and side trips to Stonehenge & Runnymede), hang around foy r a couple of days and then fly to meet Bob at the ship in Barcelona (where we’ll have two days before setting sail). I can take three weeks off all told, but 15 days is the upper limit of what Bob can do. I also have a music conference in NC in May (e. of Asheville), Bob’s 50th HS reunion (and our long-postponed family graveyard visits) in NY in early June and my duo has a music festival gig (“Muskie Fest” in Hayward, WI—almost near Duluth, MN) Father’s Day weekend. We will get paid in actual money—not fish. (Nobody eats muskie anyway—strictly catch & release).
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Molly, thinking of you and sending positive vibes your way. The ups and downs are sure a challenge. We're here for you any time!
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Wow, Sandy. You've about filled up your calendar. I've always wondered if I'd like a river cruise. You'll definitely have to give us a trip report!
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Molly, sorry you're going through this... I've been taking it a day at a time since my brother passed.. Life can really hit hard sometimes and it's good to have the support of all those here... Pray you have a better day
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I had my lumpectomy on Thursday, the 23rd. My surgeon was able to get the lump(s) out in one incision, as well as three sentinel nodes that lit up. The incision looks great! I am nervously awaiting the call from BS on Monday or Tuesday regarding pathology. My only problem at this point (other than some anxiety) is the shooting/stabbing pain in my right arm if I move just right. The pain is located more on the other side of my arm, or the back side of it. I'm hoping that will clear up shortly. Spring is on the way and I want to be able to do gardening without having that awful stabbing pain. I also was thinking, "How will I be able to start the lawn mower with my right arm?"
It's so nice to be able to share with everyone and get the positive vibes from all of you.0 -
We've done one river cruise (Budapest to Amsterdam) in 2012 and ocean cruise (Mediterranean, Rome to Barcelona) last Dec. This cruise, alas is a no-go—too short notice to Bob's staff & patients for such a long absence. So I will be going to London for CLE classes (he might join me if his buddy from the Paris/Normandy trip, an ex-Bears linebacker married to a judge, is coming along) and we will spend a few days together in Barcelona after. 8-9 days off is doable for him. I can't justify Business Class on British again like I did last year (not as nice as Iberia nor with more amenities than the Economy Comfort on British we had in 2012), so will be flying Economy Comfort on British. No direct flights on Iberia between Chi. & Barcelona (we'd have to fly out of Madrid, whose b.c. lounge is amazing); so we'll likely just fly intra-Europe between London-Barcelona-London (all coach, but much comfier than transatlantic) and Economy Comfort from & to Chicago. It doesn't get us into British's lounge or AA's Admiral's club the way biz-class does, nor is it a part of the alliance that lets us buy day passes to the KLM/Air France/Delta lounge, but maybe we could buy day passes for British's lounge or the Admiral's Club. And at Heathrow, there’s a public champagne-&-caviar cafe that was actually affordable, as is the public tapas bar at Barcelona. (British has free food & a wider variety of drinks, Admiral's Club—at least at O'Hare—charges extra for food other than munchies and drinks other than coffee & soda. Admiral’s Club in Paris was free full-service; and there’s no Iberia lounge at O’Hare, which was why a couple of years ago I had to pay for lunch at the Admiral’s Club at O’Hare before flying to Madrid). BA & AA are affiliated, as are AA & Iberia.
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Sandy.. THANK YOU. I love reading of your travel adventures. It reminds me life after surgeries, treatment, lymphedema, continues and can be full of travel adventures!
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Siciliana, I think by the time summer comes to your neck of the woods your shooting/stabbing pain will be a lot better, or gone entirely. It's not at all unusual to have weird zaps, itching, and pain after lumpectomy. As my BS told me, breasts don't like to be messed with. There are a lot of nerves in our breasts and when they go digging around in there, they are bound to cut nerves. It takes a bit for those cut nerves to settle down, so be patient. I predict that by the time your grass gets long enough to cut, you'll be ready.
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Siciliana, Welcome! Those shooting pains are very unhappy nerves complaining. They will heal eventually. The length of time it takes varies wildly. Please don't rush using your arm for anything heavy - no more than a gallon of milk. Hold off on starting up the lawn mower for awhile. Ask your BS what their recommendation is. Do your gentle stretching exercises. And make sure you get plenty of rest so your body can heal. It's hard if you are feeling pretty good but very necessary. An Lx is major surgery even if it is outpatient. BTW nothing is harder than waiting and BC involves lots of it. We're with you while you wait and hopefully the BS will call tomorrow!
HUGS!!
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Vaccine could prevent breast, ovarian, lung cancer
By: Dr. Joette Giovinco, FOX 13 News
POSTED:FEB 21 2017 03:49PM EST
UPDATED:FEB 21 2017 03:56PM EST
JACKSONVILLE (FOX 13) - It's a dream many parents would welcome for their children: a vaccine that could prevent breast, ovarian and some lung cancers. It's also the dream of immunology professor Dr. Keith Knutson.
"The hope is we can develop vaccines before the development of cancer much in the way that we use a polio vaccine or a flu vaccine," Dr. Knutson tells us in in his Mayo Clinic Jacksonville laboratory.
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He's says although he's getting closer to realizing that dream, he'll first need to test the vaccine in patients fighting triple negative breast and ovarian cancers.
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Vaccine could prevent breast, ovarian, lung cancer
"After individuals have been treated we should start boosting their host immune defenses while there's no disease on board so that they're empowered if the tumor starts to come back,"
It's called TPIV 200. It works by teaching the body's immune system "T" cells to recognize cancers as the enemy.
"Tumor cells definitely have ways that they hide from the immune response, evade the immune response. This particular strategy boosts the immune cells to high enough levels so actually when the tumors do start to grow back, there's enough of them there that they can outrace potentially or beat out the growth of the tumor cells," he says.
Glynn Wilson is CEO of TapImmune, makers of TPIV200. He says, the drug has been in clinical trials since 2012 and is now in phase II trials at multiple sites.
Although there is more work to be done, Wilson believes the results are encouraging.
"The vaccine was safe and well tolerated, but more importantly, we saw robust T cell responses. It's a robust and long acting response, the type of response we like to see," Wilson said.
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Because of the need for new cancer therapies for triple negative breast cancer and ovarian cancers, the FDA's allowing them to fast track the drug. It's being used alongside other traditional treatments like chemotherapy.
"Patients may respond better to other therapies after chemotherapy, such as immunotherapy, because the chemo, because of the cell breakdown of the cells that are killed, may stimulate the immune therapy even more," he explains.
They hope uhis lab derived stimulation will put cancer in its place.
"It's kind of an interesting idea that we could prevent the development of breast cancer if you gave it to all women, and that's something we look forward to in the future," Knutson says.
It could take more than a decade to realize a future without breast cancer, but these researchers believe it's within reach.
Below is a list of links to information regarding clinical trials:
-Ovarian Cancer (closed) Moffitt: https://clinicaltrials.gov/ct2/show/NCT02317705?term=FOLATE+RECEPTOR+ALPHA&state1=NA%3AUS%3AFL&rank=1
-Mayo Clinic Jacksonville - Triple Negative Breast Cancer: https://clinicaltrials.gov/ct2/show/NCT03012100?term=FOLATE+RECEPTOR+ALPHA&state1=NA%3AUS%3AFL&rank=2
-Moffitt - Triple Negative Breast Cancer: https://clinicaltrials.gov/ct2/show/NCT02593227?term=FOLATE+RECEPTOR+ALPHA&state1=NA%3AUS%3AFL&rank=4
-Triple negative breast cancer: https://clinicaltrials.gov/ct2/show/NCT02593227?term=FOLATE+RECEPTOR+ALPHA&state1=NA%3AUS%3AFL&rank=4
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Thanks, ladies! Wow, I feel better already. I have a tendency to come up with the worst possible scenario, so it's nice to know this is a normal part of the healing process and will probably get a whole lot better in time.
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Siciliana, we all do that so you're not alone. Glad we were able to reassure you.
HUGS!
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ChiSandy - you are inspiring me to think about summer travel when I will only have Herceptin every 3 weeks. We love river boat travel. Probably most interesting was Budapest to Bucharest. Last summer, our 50th anniversary, we were in France and then had 3 great days in Barcelona. Both came home with miserable colds thinking we had made our last trip but now I'm not so sure. Have also been looking at US based river trips. Actually looked at the great lakes one out of Chicago but the timing wasn't right for this year. We'd want to end up with our 3 days there as that's where we both grew up and haven't been back in way too many years.
I'm doing weekly Taxol and Herceptin on Fridays and this weekend has the best so far. I think I'm learning to anticipate the problems (for me, mainly constipation) better.
Hair is falling out but seems manageable with this week's buzz cut.
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Molly...got you in my prayers ...so sorry you have to deal with this too
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Siciliana....Welcome...this is a great site to answer any questions you may have.
Positive...interesting...I will have to read all this
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Taco, how was Budapest to Bucharest? We’d looked at that one, but since part of it was bus+hotels, the packing/unpacking/repacking aspect didn’t appeal to us. For the summer or early fall, we’re thinking of that one, the Rhine from Amsterdam to Alsace, or driving the Trans-Canada highway from Chicago up & across to Vancouver & Victoria (or even flying to Halifax & renting a car to go cross-country). It’s been 25 years since we were last in BC. Or maybe doing Prague, N.Italy (the Veneto, Alto Adige, & Istria), Slovenia & Slovakia by rail.
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All the talk of fabulous travel makes me feel so poor. Single mama with insecure employment and student loans here. I have a great life, but that kind of spendy travel is worlds away from my reality. Even if i had the opportunity to splash out like that, i am conscious of my contribution to climate change. I think twenty years from now frequent air travel will be the new second-hand smoke. The baby boomers really enjoyed peak prosperity.
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Tunegirl, i havent walked your path exactly, but I sympathize with you. When I was your age we were pretty strapped for cash. The only vacations we took were to Grandma's house. We had to juggle the one car we had. My dryer broke and i had two kids in cloth diapers; had to hang a load outside every day. My kids remember it as the best days of their lives.
I hope your situation turns around soon.
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Thanks Poodles! I have a great life, actually. Just no security, car, house, pension or world travel budget.
I have a beautiful son, live in a great old house in a walkable neighbourhood with big trees and excellent parks, enjoy live music with friends, use a carshare service, and ride my urban kickscooter (from France) like a boss. And i love my work.
After my bc diagnosis, i realised if i were to die from this, it would almost be okay because i've had a full life. I have been very fortunate.
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I'm sure there's answers here somewhere, but I thought I would ask and get some answers that are more recent. It's been a year since my lumpectomy and I will get discoloration, then it seems to get better and then the discoloration comes back. I had a mammogram last September and everything was fine. I will have another in March. I know when I was at the support group, I had asked the nurse when do you get back to normal after going through all the treatment. Her answer to me was two years. Thank you.
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Hi All - Sorry I haven't been around. I have been reading along, just not posting. Welcome to Anglelaw69 and the other newbies. As I quickly learned, cancer is not for the impatient or those who like to be in control. That is a major pain to deal with in the beginning - but as everyone told me...it does get better. You won't believe me right now - but it truly does.
I finished Taxol on 2/2 - after 5 months of chemo; still getting Herceptin every 3 weeks until November. I started with a new MO (my 3rd now) and like her a lot. I start radiation with her new network/cancer center tomorrow (& new Radiation Onc) - will do daily for 6 weeks...blech.
Trying to start a new way of eating - but not having much luck. My will power sucks...but really want to switch onto no sugar, no white flour, no processed food, no red meat, and no dairy...but so far - NO luck!
Luckily- many SEs are going away, but I credit acupuncture and massage for it. Hot flashes are still happening - but a lot less frequent.
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I have been reading along as well and not posting. I'm 3 weeks post-op and feel like I'm healing nicely. I just feel so "blue" at times. Like today it was 3 before I got in the shower. I guess it's all a part of this BC journey. I am still waiting on the oncotype to come back so I'm in the waiting zone again. I was feeling fine emotionally until the oncologist appointment. I just do not wait well.
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Vargadoll, speak to your PCP or MO about your blue feelings. It is extremely common for people to suffer depression, anxiety, and PTSD during treatment for life-altering conditions like breast cancer.
I went through this last year after my BMX--I had done pretty well all through my LX, re-excision, and chemo, but I had myriad complications after the BMX that knocked the legs from under me. After 3 weeks of literally sitting on the couch staring at the TV all day, my DH took me to the doctor. She listened to my story and immediately diagnosed me with PTSD. I started taking medication and felt much better within a week or so. I was able to stop the med back in August and have had no further symptoms.
Interestingly, my DH also suffered from PTSD following open heart surgery in 2014. Very common after such invasive surgery, actually. It's part of being put on a heart-lung machine. Anyway, he did okay, had some complications, had to be readmitted for kidney failure. After that is when his mood really took a nose-dive. His doctor put him on medication and it made a huge difference.
I wish you the best. Depression sucks. But you don't have to put up with it. There are a lot of things that can help.
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Positive, really interesting article about the vaccine. I know in the not-to-distant future, they will find a way to eradicate so many cancers.
Do you all mind if I ask about your reactions if any to AIs? I started on Anastrozole (generic Arimidex) but then last month was switched to Extremestan (generic for Aromasin.) I just don't want to pay my monthly co pay for the generic Aromasin ($380/month) so wondered if you'd all recommend going back to Extremestan or switch to Letrozol? I had a great deal of joint pain on the Anastrozole. I hear stories about hair loss, memory loss, etc. uuuggghhh!!
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