IBC lounge: roll call, support and just a good place to hang out
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pchyen,
Glad to hear port is placed and it has time to heal before first treatment so it isn't sensitive. Write down questions and take with you to consult, it can be overwhelming.
I just finished my final DD AC treatment, next up is Taxol.
Let us know how things are going!
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Pchyen: great to hear the port placement is completed! Waiting to start treatment was the most stressful time for me. Was able to breath a collective sigh of relief once treatment started. Hope you can both do the same.
Hope you can clarify exactly what BC Nicole has to alleviate The confusion & added stress. Focusing on getting thru each treatment phase is enough for anyone. Keeping both of you in my thoughts & prayers.
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DeniseML, so glad to hear immunotherapy worked for you. I’ll be on it for 1 yr total. You did not even need AC!! I will have to ask my MO about that. I have multiple lumps & skin so maybe I need it. I had adverse reaction to Taxol #3 but able to finish dose with xtra steroids. Has anyone tried proton therapy? My left side is close to the heart so I will ask about it. My center does not offer it so may have to go back to the other hospital for that if insurance approves it. Plz keep posting, everyone’s experience is so helpful to read.
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Hi everyone, Nicole did her first AC chemo last Thursday, had a bad few days but overall manageable. Her MO says she doesn’t have IBC but I am wondering if the MO is wrong.
Question: Has anyone with IBC experienced breast with cancer havingredness/purple & swelling 3-4 days after chemo? Nicole said the redness/a little bit purple started on Sunday (3-4 days) after the chemo, lasted about 2 days and it calmed down today.
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Dear pchyen, will your wife get trastuzumab-based treatment added to ACT, as she's her2+? or will that happen later when AC is dropped? Maybe redness/purple ,,flash" happens because of pre-medication, like dexamethasone? I don't think these "flashes" are somehow related to IBC/non-IBC but wonder what others think? Saulius
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Hi BSandra, Nicole will get Taxol, Herceptin+Perjeta after 4 rounds of dose dense AC (she is 1 AC treatment in).
The redness/purple is only happening on the breast with cancer and only started on the 3rd day after chem and lasted for 2-3 days. She had dexamethasone only on the day of chemo.
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Hello pchyen; hope Nicole and you are holding up well. As we discussed in PM, I do have a more "angry" breast a couple of days after chemo. Mine has done this since the beginning of chemo, with the small area of thickened skin becoming redder after treatment. Is Nicole's redness localized or is it the entire breast? Mine fades a bit after a couple of days but it has remained worse looking after treatment than it was before I started. (Now I have biopsy scars, etc. as well.)
I have been concerned about this but my MO doesn't seem to be alarmed. I have an ultrasound on Wednesday and I'm getting anxious; I know this is to see how I'm responding to the treatment and I'm scared. Of course if the cancer isn't responding we need to know ASAP and get a different treatment going, so I hope everyone will keep their fingers crossed for me.
Let us know what Nicole's doctor says. You might start a thread in the Chemotherapy-Before, During and After section of the forum and ask if anyone is having the redness. That will be a larger response from all BC types and not specific to IBC. Since Nicole's doctor has withdrawn her IBC diagnosis it will be more helpful to hear from others.
ETA--I forgot to add that I have had only Taxol to this point, so not sure if the AC will be the same for me. Also, I get a "steroid flush" on my face (cheeks) but I don't believe the redness on my breast is from the steroid since it is localized to the IBC skin. Of course I really have no idea.
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hi pchyen,
I did have a similar response to chemo as you describe. I believe that is a good sign that the cancer cells are being affected. It occurred with earlier treatments, but did not see it with the last 3 treatments. I was re-evaluated by SO after 3rd treatment, and clinical evaluation indicated much improvement in skin and tumors shrinking.
did you obtain a clarification to type of cancer Nicole has? Inflammatory component? I would expect the inflammation after treatment would only occur if skin was also affected. Keep asking until you get the answer that makes sense, Hope Nicole is hanging in there, and symptoms are not to bad
God bless!
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Dear pchyen, I agree with DeniseML - seems like a reaction to chemo, and that is great! Wait until HP comes into action - you guys should be fine, just keep on working the way you do now. Saulius
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Hi DeniseML & BSandra, thank you for the info! We have an appt with MO tomorrow and will bring up the reaction to see what the MO says.
As for IBC clarification, Nicole’s MO said it is not IBC even though the report mentioned IBC. Nicole does have Paget’s disease due to IDC so I am wondering if it is similar to IBC.
Nicole mentioned she got a jolt/sharp pain in her cancer breast yesterday, I am thinking that is related to chemo killing the cancer cells as well?
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pchyen.
I finished my 4 AC treatments and my breast would get red after chemo sometimes, surgeon was pleased with results. Now I am on 1st Taxol, no redness, but breast doesn't feel as "thick". I did get a chemo rash on second AC, on my breast, it is starting to fade.
I've had several jolts/pains as well, I believe it is the chemo killing the cancer.
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Hello everyone. Hope you all are doing well. Tomorrow's my last Taxol and I have an ultrasound on Wednesday. Naturally I'm cranking up the "scanxiety", worried that chemo isn't working.
I also meet with my breast surgeon on Wednesday and I need to get my list of questions ready. I already know that they won't do a bilateral mastectomy so I might as well get used to the idea of "uniboob." I also have a doppler scan of my neck (jugular vein) where my port is; it was feeling a little wonky and it worries me. I have read that any AC escaping into tissue at the port site can cause some significant tissue injury so I want to be sure that thing is working right. Next week I'll begin DD AC, which I really dread. I've been so lucky with Taxol that I'm afraid AC will kick my butt, but hopefully it will kick cancer's butt as well.
Hope everyone has a great week.
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Hello,
I am new here. I was recently diagnosed with IBC, but we are still waiting for part of the histology report to come back. I am 48 years old and I don't have any biological children. I have 2 step children, one boy, 19 and one girl, 15. My husband and I got married in October 2020, he is the love of my life and my best friend. He is the sweetest man I have ever met and I feel so bad he has to endure this nightmare.
My Biopsy came back positive cancer, with lymph node involvement. I had my Biopsy done on April 26th and we are still waiting for the results to tell us what is going on. I am getting extremely nervous about why it's taking so long. Has anyone here experienced this issue? I pushed them today and they are checking with the lab to find out. I am supposed to start chemo this Thursday. I had my port placed last Thursday, echocardiogram last Friday. I just finished getting all my dental needs taken care of. Thanks to the help if the posts on this website I got in to take care of everything that needs to be done right now. I have been reading posts here from the moment I found out that the doctors were pretty sure I had cancer. First they told me I had DCIS. But I diagnosed myself with IBC before anyone mentioned it to me. In fact, they didn't even say it to me. I asked the doctor in radiology if she thought I had IBC and she said yes. I went through all the preliminary tests, the mammogram, the ultrasound, the MRI and then to Biopsy, never thinking that it would come back as cancer. I can't believe how much I didn't know about breast cancer. It seems like this information should be taught in health classes! I thought you always had a lump and if it was at all painful it wasn't a problem. I thought I had a mastitis. I am getting my PET scan on Wednesday and will talk with a doctor from UC Davis about a clinical trial they would like me to participate in, right before the scan. My head us spinning. My thoughts are scattered, so I'm sorry if this post is all over the place.
The people in my life have been absolutely wonderful. I am so scared of the potential side effects of chemo. At this point I don't even know what kind of chemo they are planning. I think they are waiting for those results to come back to make a determination. I know this is an aggressive type of cancer. All this waiting is driving me nuts. If it can't be diagnosed until stage 3 I can feel like stage 4 is closing in, if it isn't already here. I feel like I am going to need you guys a lot.
Thanks to all of you who have already provided me with more knowledge and more information. You have provided me some comfort in knowing what to expect.
Much love to all
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Hello GermanshepherdsR4Me. Sorry that you have to be here, but it's a good place to be with those who understand what you're going through. I know the anxiety you must be feeling these days and it's a shame that you have the added stress of waiting for lab results. That does seem like a very long time to wait, and I'm surprised they'd mention clinical trials before knowing your histology. Yes, IBC is aggressive but there is pretty much a "standard of care," which usually means chemo, surgery, then radiation. So at least you are getting set up to get treatment started soon.
Will you be starting with Taxol, AC or something else? I started with Taxol and found it extremely easy to tolerate with hardly any side effects except hair loss. AC is a bit more harsh but doable, so please try not to stress about the chemo. You can do it!
We will all try to help you navigate through this, always hopeful of the best outcome for you and all of us. This is a crappy hand we've been dealt but there's plenty of hope and many treatment options. You are already ahead of the game with a wonderful supportive husband. My very best wishes to you.
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Hi NatureYogi, thanks for the info. Good to know that it is normal during treatment. Nicole's MO confirmed today as well. Wish your Taxol treatment continues to go well!
Hi LW422, congrats on finishing Taxol! Best wishes with AC treatment! Nicole will be 2 treatments in before you start yours, if you have any questions feel free to ask
. Nicole mentioned the worse SE is the bone pain from Neulasta(she is on biosimiliar Lepalga). Nausea is manageable, make sure you ask for several breakthrough nausea meds in case one doesn't work. Nicole bounced back about 5-6 days after the first chemo. The second one we are expecting to take longer to bounce back as the effect will be cumulative. Nicole saw her MO today and MO is pleased with how the treatment is going after one round. MO didan exam on the cancer breast and mentioned tumour is softer, a good sign. Hopefully the response to AC continues and get the rest with Taxol and Herceptin+Perjeta.
Hi GermanshepherdsR4Me, sorry to see you here. Biopsy result took a while as well for my wife. Hopefully you get back the result soon. Things will get moving fast once the results are back and your MO will formulate a plan.
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LW422, best of luck with the ultrasound! You already finished your taxol rounds! I'll be thinking of you.
Last round of Abraxane + Carbo beat me up, but this week feeling good again. Taking Claritin helped avoid any bone pains from the WBC shot. My WBC count is way up! Hope it stays that way.
I had aches in my underarm for a day, ugh.
I have 2 more rounds of Abraxane + Carbo + Ketruda before moving on to 4 rounds of AC. Hope AC is not too bad based on my Carbo. I lost over 15 lbs. since early April. Hope dosage is adjusted according to weight. After reading the book "Metabolic Approach to Cancer", I am now going on mostly KETO diet. Good news is I can have chicken soup and bone broth.
Good job taking good care of Nicole Peter. My husband has been a life saver too and so thankful.
GermanshepherdsR4m3, sorry to see you here, but hope you can educate yourself with all available resources and be your top advocate in your care journey.
Best wishes this week to everyone here!
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LW422; Happy to hear Taxol side effects were not too bad. I found that my imagination and worries were worse than I experienced. Hoping its the same for you. I had surgery in January UMX, my choice though the surgeon originally said she would not do both sides at one time and I did not need a prophylactic MX. In the end she said she would not refuse if I insisted on BMX., I opted for Left only to minimize risks and complications that may delay further treatment. I recommend you re-address the issue with your SO at next visit.
I asked questions about incision, but evidently was not specific enough. Ask exactly what the incision will look like ( straight or curved). I also did not receive a cosmetic closure and extra skin was left I believe because I had not made a definite decision on reconstruction or not. If you are planning to go flat you will want to discuss cosmetic closure.
MY imagination and worries about surgery were worse, once again than the actual surgery! I think I should be a horror story author! I'm very good at scary stories!
Wish you all the best! hang in there! One day at a time!
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Hello all. Good news; my US results showed "excellent response" to the Taxol; reduced tumor and lymph node size, plus improved skin features (less redness). So YIPPEE!! Now it's on to AC on Tuesday.
I also met with my SO this week and discussed my mastectomy, which will probably be in August. I'll be having a plastic surgeon handle the surgical close to get an aesthetic flat closure (no reconstruction). The PS will also perform the LYMPHA procedure, a microsurgery to connect the cut lymph channels to blood vessels. I'm hoping to avoid lymphedema if at all possible.
I have decided that a unilateral mastectomy is the best route after all, so I've dropped the bilateral idea. I may decide to have the left side removed later but not considering that right now. I just want to get everything possible done to treat the IBC breast and move on.
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LW422 Great news for ultrasound! I know you are relieved, AC should shrink things up also.
I'm having the cosmetic closure also, I'll have to check on the LYMPHA procedure.
Best of luck to you on Tuesday with AC, drink tons of water, rest.
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NatureYogi--I'm hoping the LYMPHA procedure will help, but I can't find much in the way of testimonials or actual experience. I started a thread in the Surgery section to see if anyone would respond. I know that people who already have lymphedema have had success with that procedure if they are "early stage." The one big question I have for the plastic surgeon is how do they anticipate the surgery holding up to radiation, since I will have to be radiated after healing from the mastectomy. I like the idea of having it all done in a single surgery; my SO said the LYMPHA procedure will add about 3 hours to the surgery.
Even though I only have a single lymph node that was swollen, the standard for IBC is to remove two levels of nodes.
Of course, I could have many more cancerous nodes that will be found when they remove them, so we'll see how this goes. I hope your treatment is going smoothly!
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LW422 that is great news!!! You are a true mentor for me here from the beginning. Plz keep us posted on your surgery & AC. Ultrasound found 2 affected lymphs but MRI found 4 ugh & more lumps. So I will be doing MRI again vs ultrasound due to overlapping lumps before starting AC. They do feel smaller tho.
I did genetic testing. Insurance did not cover due to no family history. It came out negative!! Cost was $250. Good news for the family & peace of mind. I am also pretty sure about uni-mastectomy, flat closure. No reconstruction. I will ask PS to close too. I pray I will have enough good skin to close w/o thigh or other graphs. Hope EBBA is doing good with recovery.
Positive thoughts to everyone!!
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LW422. Seven years ago, I had neo-adjuvant treatment for an aggressive IBC. You can see the details in my signature. At diagnosis we knew these was one affected lymph node. After the chemo, the tumor shrunk and the inflammation subsided enough to operate. As well as the Mx, the surgeon removed all 23 lymph nodes from the axilla. Two of the 23 were tumorous. The pathology showed that there was not a complete pathological response. In other words the chemo didn't "get it all". So, 33 radiation doses of the breast area and axilla followed. I, too, was worried about lymphedema risk, considering there were no lymph nodes to protect the left arm. Well, after all this time the arm is as good as gold. Of course, I look after that arm and treat any scratch as an infection risk. This is not meant to be advice for you, it's only my experience. Good luck with your decision.
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Hey there Mamacure! Oh my goodness, I can't imagine being a mentor... I'm usually scrambling to find others to lean on.
We all have to help each other along this bumpy path. Sorry to hear that you have more lymphs, but the fact is we never know what's really going on in there until the surgery and pathology. When is the next MRI? My surgery won't be until August or thereabouts. The SO said they wait 4-5 weeks after completing chemo to let my body and blood counts return to some semblance of normal. I will be a nervous wreck when chemo ends, worrying about those stupid IBC cells cranking up again. I noticed on my US report that my skin thickening did not improve; it is still the same as the original DX. Not sure if it ever "thins" or if it stays thicker, but at least the redness is resolving.
Hang in there, kiddo. We can do this!! Have a great weekend.
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Hey TravelText; hope all is well with you. I understand that lymphedema is a crap shoot, but my luck hasn't been running on the "win" side these days. So if the LYMPHA procedure offers me any chance of avoiding yet another Gift From Cancer, I'm willing to give it a go. I'm glad you have remained NED and lymphedema-free; that's wonderful and I hope you remain that way. Have a great weekend.
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LW422, I had never heard of the LYMPHA procedure so I looked it up. It sounds like a wonderful development to prevent lymphedema, and the fact that you're doing it preventively is even more wonderful. Like TT, I had a full axillary dissection and intense rads treatments. I'm very careful with that arm, and so far, have only minimal lymphedema. I would have jumped at the opportunity to prevent it altogether.
Wishing you good luck sailing through AC as easily as the T. We're all different, of course, but I found the anticipation of chemo was worse than the chemo itself. Like a lot of things, I'm guessing.
During the whole diagnostic/biopsy/lumpectomy/pathology rodeo, I felt like I was getting snake bit multiple times. Bad news just kept rolling in, wave after wave. I often felt like I was drowning in hopelessness. Crying and clinging to fragile strands of hope, trying to keep my head above water and just...keep...breathing.
And here we are...almost ten years later, and cancer is in my rear view mirror. A long ways back there. Since then I've gained 5 beautiful grandchildren, a lovely daughter-in-law, retired from an incredible career, and moved home to the state I love, in a house I love, with the husband I love. I'm grateful for this amazing "win," no matter what the future holds.
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Hey SBE. I love hearing from the IBC long-term survivors; it really lifts me up. I'm so glad that you have had so many happy years after the nightmare.
I'm hoping to hear from anyone who has had the LYMPHA procedure done in conjunction with mastectomy. I thought there might be more "buzz" about it on the forum. I look forward to the discussion with the plastic surgeon and to ask about the success rate, though there may not be much data for a relatively new procedure.
I'm dreading AC but ready to get on with it! Thanks for the encouragement.
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Good morning LW422! I think I remember reading you're starting AC today? Sending healing thoughts your way. SB
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Hey SBE and thanks for checking on me. The AC infusion went well; I feel a little woosy and out of it, but not sick. I have my pile o'nausea meds at the ready and I'm chugging water. So we'll see what the next few days bring! I appreciate the support, girl.
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LW422, get plenty of rest too! When I was on AC I napped quite often and it does help. Hang in there!
sbelizabeth, being a survivor for 10 years and posting here is encouraging to all of us here! I see you are from from my fav place Colorado. My son lives outside Denver, I've doe so may awesome hikes with him.
Take care everyone!
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Does anyone recall having edema (hands/feet) after an AC treatment? I'm a bit concerned because I have some swelling today, though I suppose with all the "premeds" they packed into me it could be a reaction to something else. My kidney function numbers weren't great to start with but now I'm getting scared that this might hurt my kidneys. So a weepy few day for me. I have a call into my MO so we'll see.
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