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Topic: IBC lounge: roll call, support and just a good place to hang out

Forum: IBC (Inflammatory Breast Cancer) —

Just diagnosed, in treatment, or finished treatment for IBC. Posting pictures of symptoms is prohibited per our Community Rules -- you are encouraged to seek medical advice from your doctor in the event of any concerns.

Posted on: Mar 31, 2016 06:23PM

PurpleMinion wrote:

Hey all, I am starting this thread to give us a place to meet up and check in. We all know this "ain't Facebook" and since some of us have left the boards recently let's have a roll call and start fresh here. Some of the "IBC ladies" and other threads have gone a bit untended so let's see who we are:

I'll go first: dx June 2015 TN IBC, not NED but hoping to get there.

IBC is such a different diagnosis than so many of the other types of BC I think it is really important for us to talk and share and learn from each other.

I am taking a "board break" mid June 2016, I will be back but mentally exhausted right now. Peace be with all of you. Diagnosed at 46 triple negative IBC. Mets to skin, lungs, bones. Dx 6/29/2015, IBC, Right, Stage IIIB, Grade 3, ER-/PR-, HER2- Chemotherapy 7/21/2015 Carboplatin (Paraplatin), Taxol (paclitaxel) Chemotherapy 10/22/2015 CEF Dx 1/7/2016, IBC, Right, Stage IV, metastasized to other, Grade 3, ER-/PR-, HER2- Targeted Therapy 2/4/2016 Dx 5/6/2016, Stage IV, metastasized to bone Chemotherapy 5/9/2016 Carboplatin (Paraplatin), Gemzar (gemcitabine) Dx Stage IV, metastasized to lungs
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Mar 6, 2020 10:19AM sbelizabeth wrote:

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.

pinkribbonandwheels.wordpress.... Dx 10/20/2011, IDC/IBC, Left, 1cm, Stage IIIA, Grade 2, 6/28 nodes, ER+/PR+, HER2- Chemotherapy 12/15/2011 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 4/18/2012 Mastectomy: Left Radiation Therapy 5/21/2012 Breast, Lymph nodes Hormonal Therapy 7/19/2012 Femara (letrozole) Surgery 4/15/2013 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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Mar 14, 2020 06:13PM Flo80 wrote:

Dear Friends,

Stay safe during this phase of the Coronavirus. Hopefully by summer this problem would be subsided. Lots of love.

Flora

Dx 6/13/2019, DCIS/IDC, Left, 5cm, Grade 2, ER+/PR+
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Mar 16, 2020 11:52PM blue22 wrote:

Hi Flora,

How are you doing?

Dx 1/2019, IBC, Left, 6cm+, Stage IIIB, Grade 3, ER+/PR+, HER2- (FISH) Chemotherapy 2/14/2019 Abraxane (albumin-bound or nab-paclitaxel), Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxol (paclitaxel) Surgery 7/29/2019 Lumpectomy: Right; Lymph node removal: Underarm/Axillary; Mastectomy: Left Dx 7/30/2019, IDC/IBC, Left, 6cm+, Stage IIIC, Grade 3, 4/14 nodes, ER+/PR+, HER2+ (IHC) Dx 8/2019, DCIS, Right, <1cm, Stage 0, ER+/PR+ Radiation Therapy 10/7/2019 Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab)
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Mar 17, 2020 10:05PM Hereforher wrote:

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 everyone

Dx: 18/2/2020, IBC, left Chemotherapy: AC 21/02/2020
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Mar 18, 2020 06:14AM Traveltext wrote:

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.

NED breast and prostate cancer. More on Male BC

Dx 03/14, IBC, Lgth. 2cm, Stge IIIB, Gde 2B, ER+/PR+, HER2- ; FEC x3, Taxol x3; Mx & 2/23 nodes; Rads x 33; now on tamoxofin.

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Mar 18, 2020 11:05AM sbelizabeth wrote:

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

pinkribbonandwheels.wordpress.... Dx 10/20/2011, IDC/IBC, Left, 1cm, Stage IIIA, Grade 2, 6/28 nodes, ER+/PR+, HER2- Chemotherapy 12/15/2011 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 4/18/2012 Mastectomy: Left Radiation Therapy 5/21/2012 Breast, Lymph nodes Hormonal Therapy 7/19/2012 Femara (letrozole) Surgery 4/15/2013 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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Mar 18, 2020 01:06PM LoriCA wrote:

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!

IBC Stage IV de novo - mets throughout skeleton, liver, distant nodes, chest wall, skin, tumor in brachial nerves.Still trying to get it to slow down. Dx 9/8/2017, IBC, Right, Stage IV, metastasized to bone/liver/other, Grade 3, ER+/PR-, HER2+ (IHC) Chemotherapy 9/26/2017 Taxol (paclitaxel) Targeted Therapy 2/6/2018 Perjeta (pertuzumab) Targeted Therapy 2/6/2018 Herceptin (trastuzumab) Chemotherapy 11/26/2018 Taxol (paclitaxel) Radiation Therapy 1/30/2019 Whole-breast: Breast, Lymph nodes, Chest wall Targeted Therapy Kadcyla (T-DM1, ado-trastuzumab)
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Mar 19, 2020 03:01AM BSandra wrote:

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

Feb 2019: local recurrence in left breast, IBC. May 2018-Feb 2019: NED. Jun 2018: Omega3:Omega6, Cp lowering, CBD/CBDA, DC/CIK. Aug 2017: stage IV de novo at age 33. Dx 8/4/2017, IDC, Left, 6cm+, Stage IV, metastasized to liver, Grade 2, ER-/PR-, HER2+ (IHC) Chemotherapy 8/27/2017 Taxotere (docetaxel) Targeted Therapy 8/28/2017 Perjeta (pertuzumab) Targeted Therapy 8/28/2017 Herceptin (trastuzumab) Chemotherapy 3/12/2019 Taxotere (docetaxel) Surgery 7/22/2019 Mastectomy: Left Radiation Therapy 9/9/2019 Whole-breast: Lymph nodes, Chest wall
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Mar 19, 2020 06:56AM Traveltext wrote:

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.


NED breast and prostate cancer. More on Male BC

Dx 03/14, IBC, Lgth. 2cm, Stge IIIB, Gde 2B, ER+/PR+, HER2- ; FEC x3, Taxol x3; Mx & 2/23 nodes; Rads x 33; now on tamoxofin.

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Mar 19, 2020 09:42AM - edited Mar 20, 2020 09:30AM by sbelizabeth

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

pinkribbonandwheels.wordpress.... Dx 10/20/2011, IDC/IBC, Left, 1cm, Stage IIIA, Grade 2, 6/28 nodes, ER+/PR+, HER2- Chemotherapy 12/15/2011 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 4/18/2012 Mastectomy: Left Radiation Therapy 5/21/2012 Breast, Lymph nodes Hormonal Therapy 7/19/2012 Femara (letrozole) Surgery 4/15/2013 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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Mar 19, 2020 10:36PM Flo80 wrote:

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

Dx 6/13/2019, DCIS/IDC, Left, 5cm, Grade 2, ER+/PR+
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Mar 31, 2020 08:27PM sbelizabeth wrote:

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

pinkribbonandwheels.wordpress.... Dx 10/20/2011, IDC/IBC, Left, 1cm, Stage IIIA, Grade 2, 6/28 nodes, ER+/PR+, HER2- Chemotherapy 12/15/2011 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 4/18/2012 Mastectomy: Left Radiation Therapy 5/21/2012 Breast, Lymph nodes Hormonal Therapy 7/19/2012 Femara (letrozole) Surgery 4/15/2013 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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Apr 1, 2020 11:49AM LoriCA wrote:

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.

IBC Stage IV de novo - mets throughout skeleton, liver, distant nodes, chest wall, skin, tumor in brachial nerves.Still trying to get it to slow down. Dx 9/8/2017, IBC, Right, Stage IV, metastasized to bone/liver/other, Grade 3, ER+/PR-, HER2+ (IHC) Chemotherapy 9/26/2017 Taxol (paclitaxel) Targeted Therapy 2/6/2018 Perjeta (pertuzumab) Targeted Therapy 2/6/2018 Herceptin (trastuzumab) Chemotherapy 11/26/2018 Taxol (paclitaxel) Radiation Therapy 1/30/2019 Whole-breast: Breast, Lymph nodes, Chest wall Targeted Therapy Kadcyla (T-DM1, ado-trastuzumab)
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Apr 2, 2020 02:44AM BSandra wrote:

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...

Feb 2019: local recurrence in left breast, IBC. May 2018-Feb 2019: NED. Jun 2018: Omega3:Omega6, Cp lowering, CBD/CBDA, DC/CIK. Aug 2017: stage IV de novo at age 33. Dx 8/4/2017, IDC, Left, 6cm+, Stage IV, metastasized to liver, Grade 2, ER-/PR-, HER2+ (IHC) Chemotherapy 8/27/2017 Taxotere (docetaxel) Targeted Therapy 8/28/2017 Perjeta (pertuzumab) Targeted Therapy 8/28/2017 Herceptin (trastuzumab) Chemotherapy 3/12/2019 Taxotere (docetaxel) Surgery 7/22/2019 Mastectomy: Left Radiation Therapy 9/9/2019 Whole-breast: Lymph nodes, Chest wall
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Apr 2, 2020 06:48AM Traveltext wrote:

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?

NED breast and prostate cancer. More on Male BC

Dx 03/14, IBC, Lgth. 2cm, Stge IIIB, Gde 2B, ER+/PR+, HER2- ; FEC x3, Taxol x3; Mx & 2/23 nodes; Rads x 33; now on tamoxofin.

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Apr 3, 2020 03:22AM BSandra wrote:

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

Feb 2019: local recurrence in left breast, IBC. May 2018-Feb 2019: NED. Jun 2018: Omega3:Omega6, Cp lowering, CBD/CBDA, DC/CIK. Aug 2017: stage IV de novo at age 33. Dx 8/4/2017, IDC, Left, 6cm+, Stage IV, metastasized to liver, Grade 2, ER-/PR-, HER2+ (IHC) Chemotherapy 8/27/2017 Taxotere (docetaxel) Targeted Therapy 8/28/2017 Perjeta (pertuzumab) Targeted Therapy 8/28/2017 Herceptin (trastuzumab) Chemotherapy 3/12/2019 Taxotere (docetaxel) Surgery 7/22/2019 Mastectomy: Left Radiation Therapy 9/9/2019 Whole-breast: Lymph nodes, Chest wall
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20 hours ago LoriCA wrote:

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.

IBC Stage IV de novo - mets throughout skeleton, liver, distant nodes, chest wall, skin, tumor in brachial nerves.Still trying to get it to slow down. Dx 9/8/2017, IBC, Right, Stage IV, metastasized to bone/liver/other, Grade 3, ER+/PR-, HER2+ (IHC) Chemotherapy 9/26/2017 Taxol (paclitaxel) Targeted Therapy 2/6/2018 Perjeta (pertuzumab) Targeted Therapy 2/6/2018 Herceptin (trastuzumab) Chemotherapy 11/26/2018 Taxol (paclitaxel) Radiation Therapy 1/30/2019 Whole-breast: Breast, Lymph nodes, Chest wall Targeted Therapy Kadcyla (T-DM1, ado-trastuzumab)

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