IBC lounge: roll call, support and just a good place to hang out
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Hello ladies,
I came across an Electrochemotherapy website of this treatment being used in the UK and around the world. However, I don't see it in the US or Canada.
Have any of you heard about this?
DD
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Welcome to the lounge dancingdiva.
I've not used it, but you've likely seen this site here: https://www.breastcancercare.org.uk/information-su...
It's used as a treatment to relieve symptoms of cancers affecting the skin, including skin metastases. Has your IBC been treated properly?
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Hello All
Had my six month checkup with the oncologist. All is well. She mentioned they are now adding Xeloda to Triple Negative patients as part of the protocol. It is done after surgery and before rads. I asked her if I would have benefited from it, she said the studies though promising, to her did not have a high enough percentage of staving off recurrence. Additionally I had complete PCR. You just never know. Previously in the US, it was usually given to metastatic Triple Negatives.
I don't think I could have taken a 6 or 8 cycle drug after surgery. Mentally.
Val
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Nice to hear from you Val, especially after your reassuring visit to the onc. Treatment for triple negs is advancing, I read, but of course the burden falls on the patient to handle these new drugs.
How are the stroke after-effects coming along? My vision has returned to normal since my November event, so I'm feeling pretty chuffed.
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Hello Traveltext
The therapy has helped. I've had some weakness remaining when standing too long. Overall well. I've had to adjust to the new normal. Some days I'm good, others not so well.
So glad about your vision. It's a scary thing.
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Hi, Traveltext. Glad your vision is back to normal! I had to look up "chuffed" -- what a great word. I'm chuffed for you, too.
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hi Travel,
Yes that was website. I've had chemo, rads, DMX and now am stuck with the tissue expanders because the C is in my skin and just getting a biopsy made it flare. It travelled to the opposite side and am therefore considered stage 4. It's in skin and the rads killed it in nodes. Have I had the proper treatment??? I hope so. Am on Ibrance.
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sbelizabeth, yes well you can see that chuffed is the appropriate word.How are you traveling with your bc, coming up to seven years post mx and all?
dancingdiva, Glad that you are on the Ibrance. Lots of good reports about that drug. What do you think of Electrochemotherapy?
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Traveltext, I'm amazingly blessed. In October it will be seven years. I still see my oncologist twice yearly, get shots of denosumab (Prolia) twice yearly, and try to eat healthy, exercise, play with my grandbabies, and think happy thoughts. My sister was diagnosed with IBC nine months after me, and she's thriving as well. We are both chuffed to be alive and well.
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travel text , if I could do electrochemotherapy I would do it in a second. It's sound great and kills it or at least had moderate results.
Selizabeth, both u and ur sister had this??!! Wow. Keep chugging.
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Dancing Diva, yeah, although my sis was HER+ and I was not. Our half-sister had breast cancer too, but not IBC.
We offered tumor samples to MD Anderson's IBC clinic if they might be interested from a research perspective, but they said no thanks.
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Hello everybody. Well, I'm kind of wondering how this is going to go down. Since my first IBC diagnosis in 2013, it returned in end 2016, has now spread to bones and lymph nodes and skin, and has now entirely taken over my remaining breast. The chemo I'm taking is eribulen - Halaven, it is working to reduce the ganglions (lymph nodes), but not stopping the spread and worsening of my right breast. We just had biopsies to determine the exact profile of what is in the right breast but it is clearly still IBC, the lack of clear lump, the thickened skin, the hardened tissue inside the breast - made it almost impossible for them to do the biopsies (I almost wrote autopsy) they had to push the needle thing super hard to get it through the cardboard like tissue. I'm guess I'm wondering where they can possibly go from here. I couldn't get any kind of hypothetical possibilities out of the intern I saw today. Where can we possibly go ? Is there anything left to try ? Ideas ?
Editing to add : here are all the things I have already had :
-After first diagnosis (end 2013):CEF; Taxotere (docetaxel); Carboplatin (Paraplatin), Taxol (paclitaxel), Cisplatin combined with radiation; radiation, mastectomy, tamoxifen.
-Since recurrence (end 2016) Afinitor/Aromasine; Ibrance/Faslodex; Halaven (current)
Editing agin to add: no hypothetical possibilities can be thought of or shared until the results of the biopsies come in, 2 or 3 weeks or longer. (Don't we hate waiting?)
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I'm very sorry to hear this amarantha. I don't have any answers, but would you mind if I shared your post with my IBC connections? Then I could pass on any responses I get.
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Why certainly, please do. I am going to edit it to add all the chemo I previously had.
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I've started the enquiries based on your revised text and bearing in mind the results of the biopsies are yet to come in.
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Amarantha, I don't have any answers either, but I'm reaching way across the continent, and the pond, to hold your hand. I'm sorry you're navigating through this crapalactic mess!
There's an IBC clinic at MD Anderson in Texas. I don't know if they do international consults, via phone or FaceTime, but it's a thought.
Gentle hugs--SB
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Traveltext and sbelizabeth, thank you very much for reading and responding to my "crapalactic mess" - hahaha. I'm halfway appeased just to have the response. I'll see if I can contact the IBC clinic, interesting that there is a clinic devoted to this one thing. Many thank yous.
Editing to add : I see that on the MD Anderson center there is a trial for metastasic IBC patients to see if the combination of Atezolizumab, Cobimetinib, Eribulin is helpful. I'm already on Eribulin, I'll look up what the others are. I hope the combination shows promise.
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Amarantha, the women I've contacted is the leading patient advocate for IBC and she is also very involved with the MD Anderson IBC unit. Will let you know when I hear back from her again. Hang in there!
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Amarantha, I'm really sorry this is happening. It's not fair. Hopefully you can get help from MD Anderson.
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Thank you MoreShoes (ha, like shoes, eh?)
Really I'm just looking for some predictions - I mean of treatment. I feel I am in superb hands, but the waiting for results is killing me, and I'm trying to prepare myself by getting an idea of what treatments are now possible. Understandably they won't share any hypotheticals with me, however I wanted to hear 'if such is true, then we'll do X, but if such is true, then we can do Y" -- Just trying to prepare myself, you know how it is ?
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Amarantha, I'm thinking of you, but I'm sorry to say that I haven't heard back from the key people at MD Anderson. Obviously the Easter break has delayed all communications. I agree you need to be sure you have a plan, and you need a second opinion.
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Thank you Traveltext - well the second opinion and third and fourth and hundredth opinions are part of the process here, no doctor is an island, nor is any one hospital, they must work in concert -, present and debate the different possibilities together, and are in touch by email with doctors at Gustave Roussy in Paris, and the cancer center in Bordeaux-- that is what gives me confidence.
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OK, here is the full reply from my friend:
The only way that she could get a second opinion is to physically come to MD Anderson.
They've been trying to work out a way to do teleconferencing for people who can't come but it's almost impossible due to incredible legalistic things. Also MD Anderson had people come from literally all over the world and the volume would be overwhelming. I know that the IBC Clinic due to its rarity is been working hard to try to find a way around this. But so far no luck. I know they're not going to quit trying. As for your friend I did get an answer back I'm sorry it took a little while many of the doctors have been traveling. And this was the answer that I got.
"She has had pretty much all the standard of care drugs. If FEC worked before, she could try Doxil, but I would think the response rate at this point would be fairly low. I would look into trials there - something like an antibody-drug conjugate or novel combo with a cell cycle inhibitor."
If your friend did want to come to the u.s. I don't know if her insurance would cover but she can be sitting on a cash basis but it's about $20,000. And that's because they do every single test they won't just see them without making sure what is really there. So I hope this gives you some answered I'm sorry for the delay. Normally I get an answer the same day but over Easter weekend many of them were away.
EN
It would be a big deal for you to go to the States, and I'm pleased that you feel confident of your team's ability to treat you with current best practice. Keep us posted here amarantha, and I'm really hoping the drugs kick in soon.
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Oh Traveltext thank you so much to you and your friend for assembling this information. Yes it is out of the question to leave France, no health coverage in the US (also no income). Your friend confirms that I've gotten the standard of care (gold standard !) - Its interesting that she is pessimistic about Doxil -- and yes, FEC did not work. -- I am glad she mentioned an antibody-drug conjugate - or some novel combo. Those are the sorts of trials that I have noticed on the MD Anderson site. Surely such trials will also be happening in France. I can't wait to find out what that might be ! (she said enthusiastically), there are so many new discoveries around the corner every minute. Okay well I can't wait to see what they come up with. Will keep you all posted ! (It shall be an interesting guessing game.) Hugs to all.
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I've no one to turn to. Just today I saw that the right breast (where the breast used to be) is bruised. Tomorrow I'll call the oncologist but for the time being I'm freaking out. Is the IBC back? I didn't even get two years without cancer? Has anyone a suggestion? Could it be something else?
Thank you
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Sorry to hear this MoreShoes. Remind us of your treatment to date. If it is a recurrence in the same location, it would be classified as a local recurrence which is preferable to a distant recurrence and is very treatable. Obviously only a trained eye and a biopsy will confirm things, so don't panic yet. Also, there have been advances in the treatment fit TNBC in the past couple of years.
The Moffitt Cancer Center has a good page on IBC recurrence:
https://moffitt.org/cancers/inflammatory-breast-ca...
Hoping that you can get an appointment immediately, and do keep us posted. Meanwhile sending positive thought waves to you across the ocean.
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MoreShoes, sorry to hear of this new worry! After the churning you've already been through, you deserve to be tulip-gazing and loving spring right now, not freaking out. Gentle hugs.
Traveltext, I clicked on the Moffitt link; good info. But I did count the number of times "woman" or "women" came up on that page alone. Four. I don't know how you keep from opening a can of whup-ass every time your gender is so glaringly left out.
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Dear More Shoes, get them to give you biopsies urgently. Do not take no for an answer. Nothing else will do. If it has come back, it does not mean it will be the same virulent form. It could come back in a much more indolent, more easily controlled form, If it has come back, it does not mean then end. It just means more treatment. Please keep us posted. Mine came back after two years and a few months. It was more indolent, and much more estrogen sensitive. I will be thinking of you all night now, please do let us know as soon as you get seen.
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MoreShoes-you've got a lot of us here to listen. Take a nice deep breath and realize how much you've already had to deal with and conquered it! Wishing you all the best in the coming days as you tackle this!!!!
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Fran, it's been a while since you've visited the lounge. How goes your treatment?
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