IBC lounge: roll call, support and just a good place to hang out
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Hi All-I just wanted to wish a very Happy Mother's Day to all the "moms" out there. I got to enjoy a lovely breakfast with my mom and my daughter and realized how blessed I am to have them both! Also, for those of you with sons, I know you will appreciate this-my 20 year old actually "planned ahead" and sent me a gift since he is still away at college (see, I guess they really do grow up at some point-LOL). Hope everyone is hanging in there!
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LoriCA, I agree, nature is where we need to be as much as possible (that is after being curled up in a warm bed). Good on you for finding an interest after your career, and one that was so completely different. Surely an RV trip would be a great experience, allow you to do more writing and photography in relative comfort, and with all the good wifi around could your hubby not do his thing? But, I'd suggest doing a trial run. Rent a vehicle and get out there for a bit to see if this really is a thing for you both. Then you've not burnt your proverbial bridges.
The discussion you had on planning your future is one we don't hear enough of outside the Stage IV boards, and good on you for sharing your thoughts here. There are so many variables with health and with relationships and with financial matters, that each cancer patient has to weave a way through the quagmire to arrive at a plan.
Like you, I'm a great planner, and although not Stage IV, I do have two cancers and have had two strokes. To this end, I have wrapped up my career, planned estate matters, got the financials in hand, and gone reduce, reduce, reduce with all the possessions, personal papers, memorabilia and all the stuff that I know my kids would not want to be burdened with. I've never felt better, physically or mentally, and am living life to the full. I particularly like BCO where, for some reason, men don't come, so I can be the resident male bc guru. But I write for a lot of other cancer websites, have a high profile in the local community of environmental topics, and get plenty of time in our large garden. I know we are at all different stages with our disease, but I hope we can all reach an equilibrium with life apart from the worries of this shitty disease.
Fran, I get the joy you've experienced from the actions of your thoughtful son. He's on target for growing up way faster than the statistical average in the modern era!
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hello all. Amaranths so glad you have you r opera trips planned. What a treat. Hoping your treatment kills all those cells. Welcome to all who have joined this club.
I’m now 2.5 years out from stage 3 triple negative with multiple node involvement. So far NEAD, but fighting side effects from radiation induced stroke. I’ve lost a lot of my mobility, though therapy has helped. I no longer wake up thinking of recurrence, but what pains I’m going to deal with for the day.
That being said, I look forward rather than backwards. At least this week.
Va
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Val, nice to have you back here. I'm sorry that you are still dealing with SEs. Fortunately for me I'm back to normal six months after the event.
I have a cardiologist telling me my blood clot stroke was likely related to the tamoxifen and you are told your stroke was because of radiation. Who is right or are they both right? This is a confusing topic.
Would you be able to tell me more about the type, extent and side effects of your stroke?
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Traveltext
My stroke was a blood clot stroke as well. They say my carotid artery was damaged by the rads to my neck area and caused a clot. Ofcourse all of this is after the fact. Since I'm TN no tamoxifen for me. My immediate side effects were complete numbness on my bc side. I was given the clot buster drug and my numbness dissipated, but was replaced by excruciating pain. It took a month of therapy to get relief. I"m left with a weakness when I stand longer than 10 minutes. I can't bear weight for long. I'm not overweight, or it would be worse. Its hard now to keep my weight down as I was very active prior to this event.
During the event, I could not speak. I understood what was being said but was unable to utter a sound. It was worse than my BC diagnosis. No speech problems or confusion now. Just the nagging pain in the leg. Therapy helps. I skipped it a few times and was unable to get about.
In my case, I don't think the Dr's knew what or why for my stroke. I did not have high blood pressure, no high cholestorol. they did all agree that this has been seen in patients that had rads to include their neck area.
Val
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Val I'm so sorry to hear that. It seems they are only recently realizing how much damage to the carotid artery is done with radiation to the neck/clavicle area. Scary that so many of our treatments involve weighing the risk of other serious and sometimes fatal complications.My mom had multiple strokes when I was a teen (due to birth control meds back then) and I've seen first-hand how hard she had to fight to regain function (she also lost speech). You would never know today that she had multiple massive strokes when she was younger. Sending you lots of good wishes for your continued recovery!
Traveltext I did propose renting and doing a trial run to see if it's something that would even be workable for him. He's never spent a single night in an RV, while I've at least spent 10 days at a time living in an RV for several years while working for clients and understand some of the challenges. But there are bigger things to worry about first - I still have at least another 9 months of Herceptin/Perjeta infusion every 3 weeks if all goes well, I'm still on opioids that require picking up a paper prescription from my MO (they are very strictly controlled in the US, not much room for play), actually there are too many logistical issues to count at this point. In the meantime I'm using the idea as motivation to get him to help purge a life-time of accumulated possessions hahaha!
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Val, Thanks very much for the explanation of your terrible ordeal. What a time you've had recovering and I'm sorry you have that lingering pain. You're right, there's lots worse things around besides BC.
Lori, your situation is now clear to me. Best plod along and get your treatment in order before adventuring away. But sure, using the idea as a way to get some action in the possession reduction area is a bonus.
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Thank so much LoriCA and Traveltext. All being said I still have a pretty good quality of life. It’s so easy for me to dwell on the ailments, but most days I do more.
Va
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hi everyone! I’m new here, but have yet to talk to a person that has had IBC. I just got diagnosed and have only had one chemo so far. I’m fortunate enough to have caught it as early as you can catch ibc and I’m also being treated by the best IBC dr, the famous Dr. Massimo Christofanilli. So all of those things are super blessings. I’m completely still not having the diagnosis sink in and it seems that no one gets my type of chemo for some reason. FEC-T. Did anyone else have this type of chemo? I feel surrounded by love and breast cancer s suppirt but alone in my diagnosis and treatment. I have friend so and family that have looked up the internet’s IBC and a swear they think I’m im to die. I have full hope that i will make it for the first round but I’m a im afraid of reoccurances
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Welcome Cat Warrior. Sorry you have to be here, but as you go through treatment, drop by to ask questions. I've had your chemo and I'm four years past treatment. And still kickin'.
How about filling in the diagnosis and treatment section of your BCO membership so we can see more about the type of BC you have. That makes our comment more meaningful.
Good luck with your continuing treatment.
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Hi Cat Warrior, sorry you find yourself here, but there are great people with a lot of knowledge and support here.
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Hi, Cat Warrior. My cancer was IDC with inflammatory features (lots of tumor emboli in the skin, with peau d'orange and redness, but not enough of the breast affected call it IBC) and my sister's was full-on, shut-the-front-door, IBC. Mine was dx in 2011, my sister's in 2012. We are both doing very well. No recurrences so far.
There is HOPE after an IBC diagnosis, so don't let your family and friends give you the sad face treatment. Earlier diagnosis and good treatment makes a big difference in outcome. You ain't dead yet, not by a long shot!
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There used to be some really great threads in the IBC section if you have the patience to scroll back through time. When I first joined the BCO forum I kept waiting to see where the IBC people were and why no one was posting any more. I thought there was no one here. It was months before I caught on that this thread is the only safe haven where everyone posts because the entire IBC section is now absolutely littered with posts from people who haven't been diagnosed. The real meat has all but disappeared, buried under piles of posts that don't belong here ( a big thank you to sbelizabeth and others who point out to people that they belong in Not Diagnosed But Worried). The more people see those type of posts, the more they think it is okay to post in this section, and right now there are pages of posts that don't belong here, which only encourages more.
Just throwing out this idea - what if we asked the Mods to support removing a big chunk of the posts that don't belong here so the relevant posts move back to where they can be seen? As someone who was just diagnosed 8 months ago, for the first six months I thought this section was completely worthless and that I was all alone until I figured out where everyone hangs out. I know we're a small group, but I think that's even more reason to let newcomers know that we're here to help support them and each other. As a newcomer I sure wouldn't want to wade through pages of useless posts from people who don't have IBC and feel as left out as I did. OTOH, maybe people think that since we're such a small minority, one thread is all we need?
Hope everyone is doing well, and hope my US friends have a fantastic Memorial Day weekend!
Lori
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The biggest blow to the IBC community came a couple of years ago when Bon left the BCO boards and all her threads disappeared, including a big IBC thread. Purple Minion started this thread soon after. She, alas, has passed away. And therein lies the problem, since Mods may not want to remove posts without permission of the original poster (or her family). I live in dread that this whole tread of 32 pages will disappear if Purple Minion's account is deleted for some reason.
So, I suggest we ask the Mods to transfer this thread to a member here so that it remains safe from unplanned removal. perhaps then ask for the deletion of particular posts, although it would be a new thing for BCO to do this, since there are so many "wrong" posts in so many threads under so many topics, that this would be a huge effort for the Mods.
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Oh, gosh...thanks for bringing all this up, you guys. It's my goal to be a kind person and demonstrate compassion as I journey through life, and I don't want anyone to feel stepped on or ignored. At the same time, I found myself googling "inflammatory breast cancer hysteria" and interestingly, found an article that described a documentary on IBC and the "rash" (heh) of calls that followed, from worried people with nothing more than bug bites or dry skin.
I understand the draw. Misinformation and media horror stories are common, and for someone with breast skin worries, the more you look around on the internet, the more convincing it becomes that IBC, with death soon to follow, is the diagnosis. This forum has a number of people with bona fide, diagnosed, IBC, and have real experiences. For someone who has read about the signs and symptoms, noticed a change in her/his breast, and is crazy with worry--how tempting it must be to beg for reassurance from those who have been there!
My compassion for such folks, though, doesn't exceed my awareness that people who have been through the grinder of IBC treatment have no interest in repeatedly reassuring the constant and continual stream of the anxious undiagnosed. Maybe we should ask the Mods to create a "Not Diagnosed with IBC But Have Been Googling and Am Very Very Worried" thread, such as the Stage IV forum has? Or just kindly direct those who post to the "Not Diagnosed But Worried" thread and hope that resolves things? SB
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SBE, there's lots of BCO IBC pages for people to choose from:
https://community.breastcancer.org/forum/81
I've noticed less IBC posts on BCO lately and I believe that's because Google have put BCO down the list of search results for "inflammatory breast cancer". It used to come up with the BCO pages at the top and that was when the "rash" of posts were coming in.
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I'm blaming it on chemo brain - since I was a mod for many years in a very large active forum, I should've realized that deleting posts is not the correct way to do it. The proper way to handle would be to Move the posts to the appropriate section of the forum.
The Not Diagnosed But Worried thread here in the IBC section tells them to go post in the Not Diagnosed But Worried/Concerned section. In the Stage IV section it's an actual thread for them to post in if they have questions, so maybe a wording change to do it the same as the Stage IV section, as SB said. But most people don't take the time to read anyway haha!
Maybe I'm just being cranky.
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Good ideas. And, if a rant works for you, Lori, go for it!
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I cruised around the "Not Diagnosed But Worried" forum. There are some posts from people who have concerns about a variety of skin changes, and it looks like their questions receive answers inconsistently.
If we have a "Not Diagnosed with IBC But Worried" thread on this forum--one that didn't just re-direct people to the main thread of "not diagnosed but worried," it might give them a place to post and receive replies specific to their concerns. Of course, no one here would offer a medical opinion or direct a poster away from seeking help from her/his doctor.
Just brainstorming here. Lori, "cranky" is allowed anytime. And you're not saying anything that the rest of us haven't been thinking!
Mods, anything to contribute to this conversation? SB
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Hello folks, well I've one more week to wait before my next chemo. My IBC breast is rivalling football hardness. It needs to come off yesterday ... the treatment is visibly having zero effect, its just getting worse, so hold on to your hats, I predict a rough ride. Meanwhile, I'm hurrying up to live, in between chemos I will have been to Bordeaux, Toulouse, Dijon and back to Bordeaux to review various operas, have received the visit of my darling mother, and will have written four articles. Physically I've felt mighty strong and upbeat. Here's a picture or two for fun. 1) bridge Vallentré in Cahors, 2) candy store in Albi, 3) vue from Cordes-sur-Ciel
(As a long time moderator on a completely different forum, I'd say mods move the unwelcome posts to other forums swiftly, but there is no reason for any of us to shame these people, they know not what they do ...)
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I agree with all that’s been spoken. Amaranths what beautiful pictures. Our prayers and thoughts are with you.
I was heartbroken when Bon left and the thread as well. I would hope this thread will not disappear
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Amarantha I'm so sorry to hear that current treatment isn't working. IBC is such a stubborn beast. I'm glad to see that chemo hasn't affected your travels, looks like you are visiting some beautiful places. Sending you much love, strength and healing thoughts.
Lori
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Amarantha, it is distressing to know your IBC isn't responding to the chemo. Would they consider a different cocktail? Use emergency if you have to. Good on you for staying on the job with your opera reviews and travels; what lovely pics. And how nice to have your mom visit. Very best wishes to you now and over the next week.
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Valstim, LoriCa, Traveltext, thank you for your kind words. Yes I think they will have to try a different cocktail. It was already known that I was resistent to FEC and to taxanes, and all the rest, because the first time I was treated for IBC back in 2013 (end) it had very little effect. I guess they were hoping things might have become different. In any case I have tried to raise a ruckus, went to see regular doctor, and had him send a message to the oncologist, also I called the oncologist secretary as well as the gynecologist-cancerologist-surgeon, who is very nice. They all have a big meeting on Monday, I hope they will be prepared with a new solution by the time I come back for chemo on the first of June. Hang on to your hats !
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Bloody hell, amarantha, we are hanging on to our hats! Thank goodness there's a meeting to discuss your chemo options, especially since they knew FEC and taxines didn't work last time. Keep raising a ruckus and ask to speak to higher levels of medical people if necesary. Keep up your good sense of humour, but don't let them take your predicament toolightly.
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Amarantha, I agree with Traveltext. Thank goodness there will be a "summit" to discuss next steps for you. And thanks for sharing your amazing job duties and the photos--beautiful!
I would also encourage you to raise all the ruckus needed to get some forward traction, and soon. Hopefully Monday's meeting will lead to some good treatment options.
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Amarantha, you're right to raise all the ruckus you can if the French medical system is anything like the Dutch one. I hope they find the right treatment. Lovely photos and I hope you keep on feeling good enough to travel.
LoriCA, you're absolutely right, this a safe haven for all of us.
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Moreshoes, sbelizabeth..., Traveltext, LoriCa, Valstim, well the bumpy ride shall begin in two weeks ! I was very happy to arrive for my consultation today with the oncologist to find she had invited the radiologist to the session, both agreed with me, that the state of the right breast is a catastrophe. In two weeks, we will begin combined radiation and chemo - five weeks of daily radiation, plus weekly Cisplatin for at least five weeks. That also involves three days of steroid infusions following each chemo. The Cisplatin involves a 24 hour stay in the hospital each time, and the three days following the chemo involved heavy home nurse intervention. I had the two home nurses of our town come over this evening and talk through all that they will have to do, it is rather complicated. In any case I am thrilled that the doctors have decided to change tactics and pull out all the heavy guns again to try to cool down the cancer in the right breast so we can eventually take it off ! Unfortunately it means I had to cancel a wonderful trip to Montpellier where I would have reviewed about ten concerts in a festival of music by Radio Franc, during two weeks which I was really looking forward to, but my editor assures me there will plenty for me to do when the opera season starts up again in September, so my goal is to get through the summer, and then be super duper well by September. This combine Cisplatin and radiation is a treatment I had in 2014 for the left breast, which worked to some degree (though not as much as they would have liked) and I lived to tell the tale, but found it quite difficult to tolerate. At the end, I was really ready for everything to be over, death seemed like a fate preferable to one more treatment of Cisplatin, but last time they did not give me anywhere near this much anti-nausea and steroids, so hopefully it will make this all more tolerable this time round. I'm very hopeful !
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amarantha I don't know what to say, except to send you a big gentle hug and let you know that we are here to hold your hand and support you every step of the way.
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Thank goodness there's a new plan amarantha. Your team really is on the ball now. Your signature section is as long as my arm, but it's nice to see it includes those forthcoming treatments. And September can't come soon enough for you, I'm sure. Post here as often as you feel like, including some nice pics. We all need cheering up along with you.
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