IBC lounge: roll call, support and just a good place to hang out
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That’s crap news amarantha, you really have gone through the mill, kitchen sink and all. As Lori says, your treatments to date have been palliative rather than curative, so you need to talk with your team about their plans now. Obviously, pain killers are your friend and you must insist on the best possible ones for you.
I can only imagine your thoughts, but please post here, not just medical stuff, but anything, so we can cheer you up during this lamentable time. ❤️ Ro
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Amarantha, I want so much for you to have encouraging news, instead of this crapalactic stuff. Indeed, now what? I don't know anything about your health system there, but pain relief should be at the top of the plan. How is your husband doing through all this?
Please come here and post, so we can hold you up and send healing thoughts/pray. SB
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Dear Amarantha, I do not know you but I send you all my heart and warmness. Please do not stop believing, and we'll pray for you. Saulius
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Hello everyone! I have just been given another diagnosis and thought I'd introduce myself. I found the breastcancer.org forums so much more informative than my former M.O. team and lurked here quite a bit which helped me to ask my dr specific questions regarding treatment.... so I thought I would come here again as I won't see my MO for a couple weeks. Its been 5 years since I ended treatment and I feel like a newbie again as IBC was not in the picture last time.
I was recently dx with IDC and planned for a mastectomy for other breast in a few weeks, suddenly breast was pink had a punch biopsy and am ER+PR+ HER2- in the skin!! and a small pleural effusion which maybe means stage 4! Scans do not show mets just IDC in breast.
I have so many questions about IBC ( is this the same as skin mets?), common chemo drugs for IDC/IBC , etc. I had ACT last time and don't think I can get it again. My head is swimming and every search I have done has led me off in another direction. If anyone can suggest other threads or sites to start with that would be much appreciated.!
Thank you to all who take the time to answer questions and share experiences. I learned so much from this site last time!
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Bookgal I am so sorry that you find yourself here, especially after dealing with breast cancer once already. This is probably the best thread for you to ask questions, we all hang out here and most of the other threads in this section were posted by people who were worried but were never diagnosed with IBC.
Is IBC the same as skin mets - Primary IBC starts in the skin (the dermal lymphatic system) rather than metastasizing to the skin from another location, while Secondary IBC starts as a more typical tumor mass and then develops clinical symptoms of IBC. I could never really find a definitive answer to that question, and I think it may depend on if the cancer has spread outside of the lymphatic system and actually shows in the skin. Maybe TravelText knows more since he is trained as a Patient Advocate. When my IBC recurred last year it looked exactly like the Patient 1 example here "Early development of skin mets - which appears similar to a rash" http://www.ibcresearch.org/ibc-skin-metastases/
I had a great response to Taxol the first time, and it is often used for IBC. But I'm HER2+ and Taxol is typically the chemo used with Herceptin and Perjeta, so maybe someone who is HER2- has experience with a different chemo.
I hope the pleural effusion is due to something else. What staging scans have you had done? Have you had a PET/CT done yet?
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Welcome Bookgal. There's lots of confusion over an IBC diagnosis since it's really a clinical diagnosis. Lori points out the important difference between IBC starting in the skin and spreading, and skin inflammation from a breast tumor. Mine was the latter version. Very often lymph nodes are involved, as were mine. Have you had a scan and/or a biopsy on your lymph nodes? This will determine staging, but you may not find out for sure until you get the pathology report following your surgery, which will happen after chemo (as per your last treatment).
Dont panic, but ensure that you get the chemo going asap. I had your gene expressions and the chemo was FEC x3 and Taxol x3, at three-weekly intervals. They worked well, the inflammation cleared up pretty quickly, and the surgeon was happy to see the change before operating.
Hope this helps. Keep the questions coming and we'll do our best.
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Hi Bookgal I agree with Lori and Travelnext. Great advice here and foremost thing get your treatment started ASAP that’s very important.
Regards,
Flira
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Lori hope your treatment is working well. I finally finished my chemotherapy but am having a little abdominal pain on my right side where the liver is. But my enzyme levels are normal since they reduced Taxol dose but raised it again today. The pain increased when I run. It sometimes goes as well. The breast MRI showed parts of liver and it seems we’re normal. The doctor is not concerned about the pain. Gets me worried though.
Regards
Flora
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Just finished second round of adriamycin and cytoxan and doing well. My blood work was excellent. I had my first infusion two weeks ago. Then again this am. My white blood cell count only went down ine thanks to the on body injector of nulesta
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Hi Missmom - glad you are tolerating the AC well. That stuff knocked me out!
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lol blue, I’m too scared to do much of anything ATM. Only nesseasry things like go to the bathroom, fix something to eat. Not too many things. I had to take one zofran so far. One Tylenol for a headache. Other than that I’m good. Oh and I took my clonopin for my anxiety. Cause I’m gonna find it hard to sleep tonight with the steriods. So after all they say ibc. I’m saying I’m still wondering. When they did the surgical biopsy they took literally 4 inches of skin, a pretty big chunk. None of it had dermal lymphatic invasion, it noted that the skin was remarkable and not a lick of cancer in that biopsy. The biopsy was taken where all the redness was also. But regardless the nurse said I’d be treated the same way cuz it’s in my right axillary nodes. Are you the one being treated for ibc just in cases it is
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Hi Missmom,
My punch biopsy was positive before treatment. I think there was someone else being treated just in case.
That is awesome that there is no dermal lymphatic invasion. For me there was concern that we couldn't proceed to surgery after treatment because the skin was still red and they can't operate if the chemo doesn't clear up the cancer in the skin.
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Hi Missmom I had no cancer in my punch biopsy too but they still treated me with the IBC protocol because of lymph nodes. I just finished chemotherapy and now surgery for November 26
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Congratulations on finishing chemo!
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hi flo. They cut like a huge chunk of skin like 3 to 4 inches. You’d think they woukd have found something right? There was no dermal lymphatic invasion. Think I already said that. Chemo brain starting in I dunno. Lol. Anyways the reason for the third biopsy (surgical ) was to get my her2. Guess the other 2 biopsy were not enough material to immunostaining to figure it out. But don’t ya think they woukd have found something there? That’s where all the DCIS was and the idc And the pinkness and a lil p dea orange. That was the spot he cut from and nothing, nota, ziltch. No cnacer. The nurse did tell me regardless I’d be treated the same way whether IBC or not. Because it’s in the lyphm nodes.
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blue did you have a petscan to be staged? I was just wondering cuz I’m getting freaked out cuz I had a petscan on September 20 which was clear. Besides a few nodes and my breast. Anyways my alkaline phosphate was 81 before my pet and then 91 on October 9th after my pet. And then on October 22 it was 108. I me it’s still in the normal range. But the reason for the blood work on the 9th of October and the 22 of October was pre chemo blood work. Which everything was excellent! Should I be worried
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Missmom, Regardless of all the tests and biopsies IBC is a clinical diagnosis and this means factors such as how you looked on presentation get taken into account. No biopsy or scan will prove IBC anyway, just the cancer type and location. You shouldn't be worried if you are treated for IBC regardless of the indications.My MO called it the "kitchen sink treatment" and I was happy to endure chemo, surgery, then radiation for around 8 months because I realised you must give this diagnosis your best shot. I finished treatment five years ago and I've had no recurrence.
Keep us posted!
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Hi Missmom,
I did have a PETscan as part of staging. It suggested cancer in my breast and multiple lymph nodes, but the rest was clear. I also had blood work before each chemo treatment. My alkaline phosphatase did go up and out of the normal range during treatment, then dropped back into the normal range. My MO didn't seem worried.
Focus on taking care of yourself and try not to look into the test results too much. Are you able to ask your MO questions? That might help you clear your mind.
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Amarantha, wanted to let you know that you are in my thoughts. Hope you are able to check in and let us know how you are doing.
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Amarantha has been in my thoughts, and prayers, a lot too. Amarantha...we miss you and hope you're comfortable. You have healing vibes coming your way from around the world.
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Also realized we haven't heard from ADDK since June (sorry I've been so wrapped up in my own saga, "self focused" is my polite way of describing when we - metastatic folks - get so caught up in our own situation that it's hard to remember to be concerned about others). I think last ADDK updated, she had to discontinue the HER2CLIMB trial and her doctors said there were no more chemos to try since nothing was working so I'm really worried about her too.
Looking back through this thread over the past year and realized how much Amarantha, ADDK, MoreShoes and I had to discuss. Some of my own story that I had even forgotten. I miss the conversations we were having. Hope all of you are okay and just taking some time away from the forum.
TT are you having any troubles from the fires? I think I remember that you are in the Brisbane area? I just looked at a real-time fire map and can't believe how many have broken out just in the last 24 hours. Australia is the only place worse than California for wildfires, and it's still only spring for you, isn't it? I hope you are safe.
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Yes, we are missing news on some folks here. BCO is not the platform for sharing news it was five years ago when I came here. Since then social media, particularly Facebook help groups on bc niches, have become more popular. That's a pity, since the chat format here, with each patient's stats listed, is superior in many ways to, say, Facebook. In any case, people make the decisions on where they post. Twitter doesn't suit everybody, but Lori and I are there all the time supporting our cohorts, and each other. It's a very immediate, sometimes frenetic place, great for learning about treatments, and satisfying once you find your niche.
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hey guys I have had three treatments of AC. I’m wondering if it’s working and have had a bad three days. I feel fine although it’s my mental state that’s not. All my blood work was perfect but I can’t help but worry about this one lab that the oncologist does. He checks my lactate dehydrogenase. I had it checked pre chemo and it was 583 (norm range) and then the day before my third infusion of AC it was 693 so it raised 110. Now from wgat I was reading that can mean tissue death and also progression during chemo? If anyone can give me any insite on this. I plan on asking him but hsve onky seen him once since my treatment started. Also the nurse
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sorry the nurse finally checked my breast on the 5th of November after two cycles of AC and she said it seemed to be working as the skin felt less thick. Here’s the thing. She didn’t see my breast initially for the first time. The oncologist did. So shouldn’t have he been the to look at it? My breast does feel less thick. So I hsve one more treatment of AC on the 20th and then I move on to 12 weeks of taxol.
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Hi Missmom - that is great that your skin is less thick! Are there any plans to do any MRIs to see the effects of treatment? I had a ton, but that was because I was in a research study.
I don't see any tests for lactate dehydrogenase in my test history. Wish I could be of help there... I am wondering if my doctors don't find it reliable since they don't test for it.
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I’m not sure what he plans on doing. But I had my last pet scan for staging on September 20th abd he told me a week later I wouldn’t be getting one for awhile. Whatever that meant. But I’d like to know indefinitely that the chemo is working. My bresdt feels smoother and more squishy. I just worry about that one blood test and why it went up 110 in a month. I guess it tests tidy energy death among other things you had a ton of side effects? I am about to do my 4th AC and I have tolerated it very well. Only prob I have is hair loss, mouth sores, heat infection in throat and maybe fatigue that’s accumulated. Is that a good sign? Also I’m still having my menstral cycle.
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i meant throat infection
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Missmom they typically wouldn't do another PET scan unless they have reason to suspect mets. Since you are early stage your follow-up scan would most likely be a breast MRI, or possibly a CT. PET/CT scans are expensive, insurance companies don't like paying for them without a good reason, and even people who are metastatic often have problems getting them approved unless their oncologist has reason to believe there is progression.
I don't think it's Facebook TT - when someone who is metastatic and no longer has any treatment option available (like Amarantha and ADDK were told) I always fear the worst, not that they've started posting somewhere else. I wasn't very impressed with the knowledge level of the Facebook groups I found, maybe because I am so research-focused, but I do see how they can be a good source of support for people who are early stage.
What I like best about Twitter is that so many breast cancer doctors and researchers have embraced it, and being able to engage with them directly has been invaluable. I also see that it's made a difference for them to hear from our point of view. And I love that people are live tweeting directly from the big breast cancer conferences so we get to see the newest research as it is being presented. This week was ABCLisbon and there's been some really fantastic stuff presented there. I was happily surprised that there was a presentation on the successful treatment of skin mets that was very similar to my successful treatment. Skin mets are common with IBC, and so many women I've talked with have said their doctors told there was nothing that could be done because the skin is immune privileged.Hopefully this will get doctors to at least try a treatment similar to the one that worked for me. They also vote on updated consensus treatment guidelines, and this morning the vote was overwhelmingly in support of using CDK4/6 inhibitors in conjunction with endocrine therapy for ER+/HER2- as 1st or 2nd line. Still waiting to see the results of HER2Climb trial because there is currently no consensus on 3rd line for HER2+.
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hi Lori. I agree fb is a good support group. I love Twitter. I need to make another account. You’re so very knowledgeable ! You’re actually one that I look forward to look to, to respond. I am state 3b so I’m considered early stage? That’s great that what you were doing was working for you.
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You're right Lori, that FB doesn't always cut it for metastatic folks, but I'm also referring to the casual. early stage BCO community member who would now be on sites like Beyond The Pink Moon (7,000 + members). And there are IBC FB pages as well. I'd like to think that the shrinking audience here is going somewhere useful. Agree about Twitter. Fantastic. And I agree with others here that your posts on BCO are always thoughtful, comprehensive, and backed by science. The longer format here is an advantage over Twitter. As are the signature details.
Missmom79, Stage 3B is considered early stage because it is only a regional recurrence to lymph nodes, rather than a distant recurrence, aka metastatic, to the liver, lung, bones, or brain.
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