IBC lounge: roll call, support and just a good place to hang out
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Hereforher, welcome. Stand with your mom--unless she specifically tells you otherwise, your loving support is huge right now.
Both my sister and I had Stage III IBC and we're both still here, NED (no evidence of disease), and thriving. Mine was almost nine years ago, my sis's eight years. Don't believe what you read about IBC being a "death sentence." With new approaches to treating IBC, as Traveltext said, many of us do well.
I did the same chemo as your mom. I like the "red soldier" phrase! Everyone is different, but I tolerated chemo very well, and worked full time through it. Like your mom, I wasn't overly distraught from being bald. I had a wig and wore it a couple of weeks, but found it hot and itchy, so abandoned it for pretty caps and scarfs and going commando a lot.
Your mom is just at the threshold of her treatment. With chemo, surgeries, radiation...it's a long haul. Having support from those you love makes it all bearable. And like I told my sister, who was diagnosed 9 months after me--before you know it, all this will be in your rear-view mirror.
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Dear Friends,
Stay safe during this phase of the Coronavirus. Hopefully by summer this problem would be subsided. Lots of love.
Flora
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Hi Flora,
How are you doing?
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Thanks for the warm welcome all - Lori, Traveltext, sbelizabeth...
Mom is still cooking which I take as a good sign that even if she's feeling cruddy, she's still doing the things she loves.
She has also finally spoken to her own sister and my brother about what is happening with her health and I'm proud of her for speaking up.
Her picc line is in and does not seem to cause much discomfort other than for bathing. Hair is...not great but I think it affects me more than her. An unfortunate incident during an MRI resulted in some cracked ribs for her though - we are in discussion with hospital administration about such a grievous error and it's effect on her. Right now I worry a little that she is being placed on the back burner given the pandemic crisis. We have over 100 infected in our province alone with a first death reported this week. We are practicing social distancing and isolation at this time - mom is really only going out for the myriad medical appointments she has right now. I am also keeping my distance
her potassium is quite high - Google tells me a lot, can someone chime in?
Another question for the class:The regimen is meant to be 4 biweekly AC, followed immediately by 4 biweekly Taxol (as far as I know, it may be taxotere??), then surgery (one breast or both is dependant on BRCA finding). I understand the neoadjuvant chemo is the standard for IBC.
However - mom wants to have her surgery after the AC is done and then to start Taxol. I can't find very much information to support this as a benefit over the original plan. Mom thinks her oncologist is giving her a one size fits all solution. Again, any insight/experience here would be gratefully accepted
stay safe everyone0 -
Hereforher, Good to hear that your mom has a plan for treatment.
I’ve never heard of the surgery coming in the middle of chemo, and I think I’ve heard it all! The idea, with IBC, is that the tumors, and the inflammation, are bought under control before surgery commences. By all means, talk with your MO about this, and let us know what he/she says.
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Hereforher, how high is your mom's potassium level? Sometimes chemo will break down tumor cells to the extent that the potassium the cells release will cause increased levels. http://chemocare.com/chemotherapy/side-effects/hyperkalemia-high-potassium.aspx
Like Traveltext, I've never heard of giving half the regimen of chemo, then surgery, then completing the chemo. With IBC they really want to clear the skin as much as possible before surgery. Suturing the edges of the surgical incision together, if there's lots of remaining cancer in the skin, can lead to recurrence along the surgical scar. At the same time, radiation therapy after chemo and surgery does a lot to kill any cancer cells lurking on the chest.
I had a PICC line for quite a while, when I couldn't shake a post-op infection and had to do home antibiotics. I forgot about it except when I showered.
Lori, how are you? SB
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Hey SB, thanks for asking. Life sure is getting surreal, isn't it? I live in one of the early hotspots so things have been crazy here for a while. I'm a little concerned about my ability to get fresh produce and meat (protein) going forward because our grocery stores are always emptied within minutes of opening and by the time my husband leaves work he is left picking over scraps. We won't starve, I keep a good earthquake kit and a well-stocked pantry. I even have a 3-week Mountain House kit if it comes down to it. But I've been eating a diet of protein and lots of fresh fruits and veggies to try to keep my body as strong as possible, so I'm not excited about the prospect of eating a diet of mainly shelf-stable carbs if it comes down to that. It's impossible to find bananas here and I keep picturing dozens of black bananas sitting in people's kitchens. People hoard the strangest things. At least we did manage to snag a bag of Halos because I like to eat an orange every day.
I've been self-isolated for 3 weeks now because my WBC dropped like a rock for some reason. Even had to cancel lunch with a friend I hadn't seen since last year because she just returned from a Mexican cruise. It's the first time my labs have shown any changes during 2.5 years of chemo, so I'm hoping it was just a one-off thing and tomorrow they show a rebound. Can't say I'm excited about leaving the house for chemo tomorrow, but I'll see what they are doing to protect people like me.
On top of all that, I had a water leak in the pipe between the street and the house. My husband was glad that I always make sure our earthquake kit has plenty of water because we had no running water in the house for a week. But the timing double sucked because although we could refill the jerry cans of water from the tap, it was hard to replace the bottled water we had used because it was all sold out. I don't know why people think they need to hoard bottled water for this damn virus. They had to take a jackhammer to the courtyard in front of the house, oh yay. It's been raining ever since (can you believe that, rain in SoCal for two straight weeks??) so it will be at least another week before that can be repaired, and we'll probably end up having to tear ALL of it up and redoing it otherwise it won't match, right when the economy is crashing and we're about to go into a shelter-in-place lockdown (my husband is self-employed, so lockdown means no income),
Then after they fixed the leak and turned the water back on, apparently debris got in the pipes and I had no hot water in the master shower. Took another four days to get the part in and fix that.
AND THEN the charging port on my stupid phone died. I hate spending money on myself when I don't know if I'll be alive long enough to justify it, but after 3 days of trying to get the phone to charge I realized that I really needed to have a reliable phone in case of an emergency, so now I have a new phone. My old phone was a Note 4, so it was time to upgrade anyway but I really loved that phone.
So life has been throwing us a few extra curveballs on top of the COVID-19 situation, but we're still in good spirits and doing okay. My husband would fly to the moon and back to get me what I need, but I feel so bad about all of the extra work and stress on him now because it's not safe for me to leave the house even to run to the grocery store. We don't even want me to chance going during the first hour many stores are doing for the elderly and at-risk because it's still very crowded and my immune system is seriously challenged right now. Last week he stayed on the phone with me the entire time as he walked each aisle and told me what was left (not much) so I could choose what he should buy haha! Poor guy.
How is everyone else doing with this craziness? Hope all are well!
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Dear all, we're all good here! Country is in lock-down (quarantine) but... I am thankful to our government that they have been decisive: quarantine was announced when there were only 6 known infections a week ago. There are 34 at the moment, there will be more for sure, but I feel confident everything will be okay. Shops are full of goods here, so nothing to worry about but most of us use delivery services, so what you order is left at your door. I have noticed a few good things about all of this though: 1.This quarantine is nothing more than what my family was already living for past 3 years (I mean in the way we were protecting ourselves). 2.There are good aspects and opportunities: people stay home with their children, have a chance to be more inventive. I personally go to work (allowed, car from door to door and back, lunch delivered to our door without human contact), cook in the evenings (I love cooking, love new recipes!), play with my son, and play my ocarina (instrument). And yesterday we were in bed at 9 o'clock, both with my wife reading books - we laughed that we looked like old people, as I fell asleep while reading, haha:)) I'd say... it is my first real holiday in years! 3.People in USSR were in constant quarantine for 50 years (yeah, you guys do not know what it means not to be allowed to go to the beach after 8 o'clock, when tractors harrow sand every evening for footprints to be seen in the morning, as you might try to swim over Baltic sea to escape to Sweden:)) Sorry to be one of these rare optimists but that is just the way I am:) Hope this message brings you some smiles:) Your Saulius
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Well, that was a nice summary of your life under COVID-19 in Lithuania, Saulius. Small countries and particularly small island nations like Singapore and Taiwan, have been most successful in curbing the spread of the virus by taking drastic measures like closing borders, imposing travel restrictions, and closing institutions to curb the risk of transmission. Here, in Australia, we are doing similar things, acting more or less quickly and, as an island nation, huge in size, but with only 24 million people, we are still watching the exponential increase in cases. I think we have around 700 cases in total with 10 deaths. Of course, this is just the beginning. All events are cancelled, gatherings of people over 100 banned, sporting events played in empty stadiums, and supermarkets full of panic buyers. The economy is in free-fall. Government assistance has been promised to those losing jobs, retirees and businesses. Fortunately, my partner and I live in a rural location where self-isolation is what we’ve been doing for years! We’ve always worked from home, so no change.
Lori, you are always in my thoughts, and especially now that this new crisis is dangerous for your WBC, so critical to ensuring you can continue with your treatments. All those household dramas, holy moly, likely things can only improve.
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Here in the middle of the US, people are resistant to being told their freedoms are being restricted, even for a pandemic. There are still people out and about, although the government has closed businesses and public buildings. As a nurse, I've worked in hospitals in which ICU beds are full 100% of the time, with critically ill patients held in the ED until an ICU bed opened up. All over our country, availability of critical care beds is ordinarily pretty low, and that's just with day-to-day cardiac, trauma, etc. Throw COVID-19 into the mix and we will be overwhelmed. I'm worried our country is just a few days behind Italy's experience, with tents in hospital parking lots, and very sick people admitted to camp cots. Then there's the grim possibility of critical care "triage." Who gets the ICU bed? Who gets the last ventilator?
These are challenging times. Our own household is sheltering in place for the duration. I ordinarily keep my kitchen stocked well, so we could probably live quite a while on what I already have, and I don't think anyone's going to die of scurvy if we don't eat a lot of fresh food for a few weeks. There's facetime and zoom room, so we can video chat with friends and family whenever.
Lori...low WBCs, leaky pipes, no hot water, dead phone...I think I'd crawl into bed and pull the covers over my head. But not you, girlfriend. I hope your chemo today goes smoothly and life begins to settle down. Well, as much as it can during this virus storm! SB
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Hi Blue22,
I am doing okay just down with cold and they asked me to self isolate. I had just started going back to work. Recovering it just bad cough.
Regards
Flira
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Hey, everyone...it's been a long time since we checked in with each other. The world is on fire right now. How is everyone doing?
My hubs and I have been in self-quarantine for two weeks now. It's a lot less of a hardship than others face, since I'm retired and my hubs has worked from his office basement for more than a year. I'm willing to shelter in place until told otherwise, but I can't listen to non-stop news. It just wrecks my peace.
I hope you, along with your friends and family and loved ones, are safe. SB
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SB I am glad to hear that you are doing well. I see so many struggling with the isolation of staying at home. It hasn't been much different for me other than the challenges of finding food in the stores, but my husband hit the jackpot last weekend when he found a fully stocked store. It felt like Christmas morning when I unpacked bags of meat (chicken!!), flour, a loaf of bread, and other goodies we had been hoping to find. I was so happy I could've cried. Usually he would walk through a store with me on the phone, telling me what he found on the shelves (not much) so I could decide if it was something I wanted. Now we can keep him out of the stores for several weeks and I can stop worrying. He's still working (essential service) and since he's self-employed he's trying to make as much money as he can before the economy completely crashes and business dries up.
It's not a good time to be in active treatment, it's very scary to have to visit any health care facility right now. You have to go through a temp check and screening before being allowed inside, no visitors are allowed, and everyone is in full mask and gowns. There is an ominous vibe, a very strange feeling. Last week there were only 3 people in the infusion room when usually there are 20-30.
My hemoglobin hit a dangerous level when I had labs done at my last infusion. We were hoping it was just a lab error or a one time blip, but because it was so serious I had to return the following week to have labs redone. In the meantime I had to take aspirin every day to help ward off a heart attack or stroke. It was still dangerously high when I had it rechecked the following week. Since we can rule out the most common causes - heart damage, lung damage, and dehydration - my oncologist is fairly certain that it means bone marrow involvement. The high hemoglobin means that I have too much blood in my body and it's too thick to circulate properly. We'll control it with phlebotomy - having a percentage of blood removed from my body on a regular basis. I'm telling myself that it will be like reverse chemo - one day we'll plug me in and pump stuff into my body, another day we'll plug me in and remove stuff from my body.
But of course my port decided to act up last week. It took 20 minutes just for them to get enough blood to run my labs. My MO is self-isolated because of symptoms, he went into isolation a couple days after I last saw him. They had to get him on the phone at home to try to decide what to do with me. After a lot of discussion it was decided that I should stick with the aspirin regimen one more week and return this Thursday to try phlebotomy again. In the meantime I'm trying to not even think about the possibility of a clot in my port and choose to believe that my port was just being temperamental (it happens from time to time, but usually they can get the blood flowing freely after a couple of minutes). Keeping my fingers crossed that everything goes smoothly this Thursday and I can put at least one worry behind me.
But I'm still doing well and in good spirits. Hope everyone else is making out okay.
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Dear all, dear SB, Lori... thanks a lot for the news, I am very happy you guys do fine. We are okay here too, just spring is not rushing in (still snowing from time to time), so staying at home quarantined... is no problem:) Everything else goes smoothly. I also was worried about how NCI will deal with infusions but they did really well a week ago, so hopefully this continues... It is crazy, when I think, to wish "please stay healthy" (which is a standard wish every day now) on a cancer forum, and especially on stage IV forums. But... please let's stay healthy...
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These are tough times, for sure. To those going through Stage 4 treatments, and the attendant concerns, you have my admiration. I know Lori well from Twitter and I don't think I've come across anyone on these boards, or anywhere, who has faced the hurdles she has. Lori is an inspiration because she keeps on top of her treatment plans using sheer perseverance and an acquired knowledge of every aspect of her treatment. If this isn't enough, who could forget the recent burst pipe drama that she and hubby had to deal with! Holy moly, one thing after another.
Elizabeth, you are in your 10th year, so we can appoint you our mentor. It sounds like your quarantine is a bit like the one I'm having, more of the same! However, as we all know, nothing is the same, and it wont be for a long while. Things aren't too bad here yet, but our country is following the steep upward trajectory that most nations have experienced. New public health measures are being introduced every few days. Most recently is the lockdown to our borders, self isolation in our homes, a ban on non-essential travel, schools closing, jobs terminated, government support financial increased for employers and employees, etc. All this has happened in the last month and there is no end in sight. It's always assumed that it will come to an end at some point, but I cant see that being anytime soon. My partner and I are settled in a rural location with plenty to keep us occupied, and the quick dash to the shops once a week. We have ramped up production in the vegetable garden. Fortunately I've always worked remotely and the internet is my lifeline.
Saulius, you and your family seem to be safe and handling quite well the situation. It's great that Lithuania has moved so quickly to protect its people. I can see from your statistics that your young wife is nearly three years with this disease and I trust the recent radiation was successful.
Flora, you seem to be doing well, and Blue22, just over a year from diagnosis, I trust you are also faring well.
MoreShoes, what's happening in the Netherlands?
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Dear Traveltext, thanks a lot for your summary. For sure Lori is an absolute inspiration. We went and go through hell but what she goes through I don't have words to describe it.
As for our past treatments, I'd like to believe we did well. As of now, my wife is NED, I pray and do everything every day for it to continue. We had first NED scan of her liver on the 16th of April 2018, so in a few days it'll mark 24 months of NED, quite remarkable compared to situation when we had to sign for first chemo on our own risk, as she was almost in liver failure (metastases all over her liver)... She relapsed but only in her breast (no surgery, no radiation before - just systemic treatments) in Feb 2019 but we together with doctors acted decisively, and hopefully she stays in durable NED for long long time... we never know with this crazy disease but I remain hopeful, as there are a few preliminary studies that are pretty favorable for stage IV Her2+ de novo who achieve NED... Ahh...:/
It is not connected to C but I got some interesting hypothesis regarding Covid19 from one member in these forums (thanks!), a very logical one: https://www.jsatonotes.com/2020/03/if-i-were-north-americaneuropeanaustral.html. Yale university is also working on this hypothesis...
Please let's stay healthy,
Saulius
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TT I agree that I don't see it ending any time soon, and as difficult as the immediate effect is, I shudder when I think of the long term economic effects in this country. I'm envious of your rural location. Here they have closed all of the beach parking even for locals, not just parking lots but no parking available on any street along the beach, so unless you are within walking distance you're out of luck. I technically am within walking distance because it's less than a mile, but it's further than I have the energy for these days. I have hiking trails right out my backdoor, but it requires climbing a very steep hill that I hated even when I was healthy haha! So I've been sitting in my backyard watching my hummingbirds and wishing I was planting my garden now that spring is here. I think I need to find a nursery that is open and doing curbside pickup and send my husband out to get some plants for me.
Saulius I'm glad to hear that your wife is still NED. There are many women here who get years and years on H&P. Looks like she may be one of them.
As TT knows, I went yesterday for labs and phlebotomy. My hemoglobin came down a bit again and is now just above normal. BUT my nurse said that they've received literature advising to stop doing phlebotomy via ports. Not sure if that is CV related, I haven't been able to find anything yet. My MO is still self-isolated. I'm still on aspirin for another week until I return for chemo, and the hope is that my hemoglobin drops back into normal range and we can postpone phlebotomy for now, which will give everyone time to find out how they are supposed to do it for someone like me.
California has now issued guidance that everyone should wear a face covering in public. San Diego county made it mandatory. I expect we'll see that expand to some other states soon (like NY/NJ), but it's crazy how everything is a patchwork of rules and guidance here. Individual towns, counties, states, and the federal government all issue their own guidelines, and some states are still doing absolutely nothing to stop the spread. It's still life as normal in several states. Conspiracy theories abound. What a mess this whole thing is.
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Dear Lori, phiu... I just hope this quarantine is over sooner than later, so that you could go on to find a suitable treatment for you, with your MO's involvement. I still am sure there must be something. What could be done to check the bone marrow thing? Sending you and all others best wishes, Saulius
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Hi Traveltext,
Thank you so much and I just recovered from a bad cold which took like 29 days to go but still have cough. Just confined to my appointments. As my her2 changed to positive after mastectomy I still have done herceptin and perjeta. Now i have started to look forward to my appointment so that I can get out of the house and talk to the nurses and the staff in the hospital. Hope you are staying safe as Australia controlled very well. Hope you have a wonderful day ahead.
Regards
Flora
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Dear Lori,
Hope you are staying safe and you are an inspiration for me and all of us. Stay safe and healthy and lots of happiness.
Regards
Flira
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Hi Everyone,
I am doing ok. I feel like the coronavirus issue doesn't affect me as much as they do "normal" people, since I've already done quite a bit of social distancing anyway over the past year thanks to treatment. I am able to work from home, which is good since the big D from Perjetta hits me pretty hard and I would much rather be at home when it strikes. I also get tired quite a bit, not sure if that is from HP, Xeloda, Zoladex or a combo of any of those. I do miss hiking quite a bit. I live in the Bay Area, and people went nuts here after they started closing down public events and non-essential businesses. Suddenly everyone seemed to want to go hiking or go to the beach.... and they had to shut down parks and trails that normally are not crowded. Before BC I went hiking usually every weekend, and during treatment I could do some, but now everything is shut down thanks to a bunch of selfish twits that can't behave.
I really did not like going in for my infusion last week. They quizzed me at the entry to the hospital about symptoms, and since I have a chronic runny nose and had a bit of a sore throat from allergies - they sent me to a designated screening area. That made me very nervous, considering that it is quite likely there could have been someone with coronavirus in the same room right before me...
I am getting tired of all the whining of people about coronavirus. I'm NOT referring to people who are actually affected or suffering in some way, but instead people who are having such a hard time because they can't do their usual activities like going to sports events or clubs or whatever. Geez, it is nothing compared to what everyone here has gone through!
I hope everyone here is keeping safe and doing their best to take care of themselves! I wish good health to all of you!!!
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sblizabeth my skin never cleared all the way up. i still had a noticeable difference in the affected breast from my normal breast. i was so afraid that chemo has not worked for me. i just had my single modified radical mastectomy and all 12 nodes they found were cancer free and i only had a bit of residual in the breast which was 2mm. very small. i was shocked to hear that as i didn’t think i had a great response to chemo. surgeon said it was a near complete response. i am hormone negative and her 2 plus. i just noticed you said above that they wait for skin to clear after you chemo but it doesn’t always clear up. i know a few other ladies also that their skin on breast wasn’t fully 100 percent but they got a complete response. i also just wanted to chime in because i have not wore in awhile and wanted to see how everyone is doing. i heard in my group today that there was only one man with IBC in the world from australia...i’m thinking it must be travelbtext. i guess someone knows someone that works in oncology in my group and they have a man who was just diagnosed with IBC that may need to reach out here. i did direct the woman of the group that traveltext was in here so that maybe that man could join also as we are not allowed any men in our group as there was only one with IBC and now 2.
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Missmom, I'm likely the Australian male with IBC. I'm doing fine and would like it if you could pass on my details to anyone, female or male, who might want contact with an IBC survivor. I'm a trained cancer counsellor. Of course, anyone is free to join this group.
So glad to hear that you are on the mend, and of your great response to chemo. Sounds like you wont need radiation. Best wishes to you.
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lori i agree this whole thing is a hot mess. we live in new york (not nyc) upstate and we do not have mandatory masks here. i have been hearing that for cali as my friend lives in san berdino (spelling) anyways it is so crazy how the government has a list of rules and then other states and county’s have theirs and i’m still seeing people not taking this sars 2 seriously ! my kids have been inside for 3 weeks! they have not gone any where. the faster people stay inside , the faster they may be able to get rid of this or contain it, it scares me and my fellow friends who have cancer and are immunodepressed. i try not to go to the grocery store but i do wear a mask and when i get home i wipe everything down with lysol and of course wash my hands very well. i should be starting treatment again soon like within a week and am scared to even go to the cancer center. i have finished my 16 rounds of chemo and had mastectomy on march 27th. i was a priority that day as i was my surgeons only patient cuz of covid. good news was i achieved almost a complete response with no positive nodes out of 12 and only 2mm left in the breast and got very generous margins. i hope you are doing ok prayers . i hope everyone in this forum is doing ok and stay safe
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i will def spread the word when i find out more details travel text. i think with IBC i will still need rads no? even with 2mm left of residual and also got very generous margins.
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Missmom, Yes, radiation would be advisable with the residual tumor. What does your oncologist recommend?
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Hi all,
Hope you're all safe and as well as can be in this strange new quarantine world. Haven't posted much but I do read everyone's posts regularly and it has gotten me through this first year + post IBC diagnosis. I was looking for input re: reconstruction and IBC, as I'll have lots of time to consider this since who knows when I will actually be able to get it now.
My onc left the practice in October (went to full-time research). I am happy w/ my new onc, but she is a lot more cautious than he was - put me on Zoladex shots when he wasn't going to, etc. Original plan w/ old onc, breast surgeon, and plastic surgeon was for me to have DIEP flap surgery at the end of July, will be 1-yr post mastectomy (pCR), 8-months post radiation. New onc is advising against it and wants me to wait another year (but is okay if I swap out expanders for implants in July.
I asked her if it was because of high risk of recurrence w/ IBC - she said yes, not that DIEP flap surgery will increase risk of recurrence, but because she doesn't want me to regret having had such a major surgery if I do have a recurrence. (I also had a melanoma pop up at end of chemo and had surgery to remove it, and just had thyroidectomy a few weeks ago b/c they found thyroid tumors in my initial scans). So I get that she thinks that I've been through a lot this year, but I don't think she really knows me yet or understands my personality, which is definitely more of a "live as best as you can in each moment." I'm also really confused about her suggestion for implant swap, as I thought they were contraindicated w/ IBC.
She said she's not telling me NOT to do DIEP, just her opinion. The critical care team at my job wants me to get a second opinion, which is a little difficult at this time - I was thinking of reaching out to Dr. Christofanilli to see if he would do a second-opinion about reconstruction timing remotely, maybe televisit, not sure if that's possible.
Any input would be much appreciated, particularly those who have had reconstruction. Thanks.
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Bklynstoops, nice to hear from you! I had DIEP recon a year after the mastectomy, and about 9 months after rads were finished. I did not have a tissue expander in place. My rad onc asked that I not--he wanted to plan the rads treatments without needing to work around the expander, and expanders tend to not do well with the extensive rads I received; the skin gets thin and fragile, and infections are common. I'm very pleased with my recon, although I will say it took one enormous surgery and 6-7 smaller surgeries to get it all sorted.
No one mentioned that I should consider not doing recon based on the likelihood of recurrence. Even if it had been brought up by my onc, I would have gone ahead with it anyway, since I was tired of having just one breast. For me, even though the DIEP surgery and recovery was lengthy, it was an enormous beacon of HOPE. After all that had been done to my body to eliminate the cancer, this was designed to give me back normalcy and beauty. But everyone is different, and has different opinions and approaches to big decisions such as these.
Missmom, congrats on being past the mastectomy, and for how well your chemo worked. I think you may have misunderstood something I wrote--the typical approach to treating IBC is to blast it with chemo first, to shrink the skin involvement as much as possible, and then the mastectomy. They don't "wait for the skin to clear," although hopefully the chemo has killed all the cancer in the skin, or at least beat it back so that there's no cancer in the incisional scar. For my mastectomy, I had good margins but there was still a lot of cancer "emboli" in the dermal lymphatics of the removed breast. Still...that was almost 9 years ago and I've been NED since then, so my own treatment plan was a success. That leftover cancer is in a jar on the shelf of a lab somewhere. Good riddance.
Lori, I so look forward to your posts to hear how you're doing through all of this. Stage 4 BC with the world on fire...talk about challenging! I'm glad your hemoglobin is improving. Give your hubs a high-five for us and enjoy those hummingbirds. It's very early spring here in Colorado, and we have some beautiful days, soft and warm, but it's predicted to snow on Sunday. I remember those California springs when the rains turned the hillsides into green velvet and the earth smelled warm and fresh.
Traveltext, blue22, Flo80, Saulius, you're all in my thoughts and prayers. Stay well, everyone. SB
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Thanks so much sbelizabeth. That's exactly how I feel, it's a huge beacon of hope, and a reward for getting through everything I've been through this year, there were certainly times that I wasn't sure I would, had a clot in my aortic chamber during chemo, the melanoma scare, etc. I am very aware that this surgery won't be easy but I want to feel some physical return to normality, and was really looking forward to that. Also really not thrilled by the idea of a swap for implant surgery, seems like an unnecessary step.
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Missmom California now has 4 counties and several cities where wearing a face covering in public is mandatory, subject to a $1000 fine. Newsome is expected to issue an order for the entire state in the next few days. Once California requires it, I expect that other states will follow. People have also been advised to take their family members out of nursing homes if at all possible because the outbreaks are increasing there. We're still doing a good job keeping our number of cases down, but people are really start to rebel at the lockdown. Another local beach was completely closed today, even for locals, because idiots can't follow the rules.
Blue sorry to hear that the Big D is an issue for you with Perjeta. Thankfully I never had that problem with P (although I did with another drug), but I know of many women who dropped Perjeta and stayed with only Herceptin because it was so bad. Their oncologists believed that the relatively small benefit of Perjeta wasn't worth the major impact on their quality of life. Something to keep in mind if it gets too bad. It's frustrating that so many HER2+ targeted drugs have that very unpleasant side effect.
Saulius from what I understand we would just manage the problem with phlebotomy as needed. Doing a bone marrow biopsy or changing my treatment wasn't even discussed, but I haven't seen my oncologist since it first became a problem. Not sure I would even want to have a bone marrow biopsy at this point.
SB it's a very atypical spring this year. It's been raining almost non-stop for a month and cooler than usual, and it's going to rain for at least another week. Saturday is the only day with no rain in the current 7-day forecast. Going into March we started with below average rainfall, another drought year (you know that Jan/Feb is our rainy season if we're going to have one), and now we're already above average with another week of torrential rain on the way. It's depressing to not even be able to sit in the yard. There was already one evacuation order nearby due to mudslide risk in a burn scar area, and where are you going to go when you're evacuated during a shelter-at-home order? How are people supposed to maintain safe social distancing in an evac shelter? Many of the hotels that are still open are housing homeless or are providing rooms to essential healthcare workers. My big fear is that all of this rain in such a short time is creating fast burning fuel, and if wildfires break out while the pandemic is still going strong and with so many first responders/fire fighters affected by the virus, we're going to have a really ugly situation on our hands.
I'm really glad to hear that it sounds like no one's treatment has been postponed due to this situation. Many hospitals and clinics are treating only the most high risk patients, and I suspect that anyone diagnosed with IBC would fall into that category.
Waving hello to TT, Flora, and BklynStoops, and anyone else I may have missed.
Chemo tomorrow, hope my oncologist is out of self-isolation and back to work!
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