IBC lounge: roll call, support and just a good place to hang out
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Thanks for the clarification, Saulius.
My very best wishes to your wife for her upcoming ultrasound, and to you as well.
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Even ten years ago, when I was diagnosed, the stuff I could find on the internet about IBC was mostly gloom and doom. I learned to just stay away and concentrate on getting through treatment one day at a time. Now, just a few years later, there are new treatments and protocols for people diagnosed with IBC, and it's a much more hopeful state of affairs.
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Hello All
Entering my 6th year NED, just had a lot of scans, mammogram and ultrasound. All clear.
5 years ago, I prepared to die. The statistics were terrible. This thread kept me sane. Through horrid burns with rads, arthitis flares Ive retained some of my 'old' self. Time helps Thanks to all.
Val
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Hi Val and thanks for checking in. Congrats on your 6 years NED, and especially for clear scans! It gives those of us still in treatment a lot of hope to hear about long-term success.
I had my 5th Taxol earlier today and looking forward to being done with it, though I dread AC. I wanna be a success story, too!!
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Hi LW22. I'm one year post my last Herceptin/Perjeta, and it's been a little over two years since my IBC diagnosis. I worked all through Taxol, got it every Monday morning for 12 weeks, didn't find side effects particularly challenging - at the first signs of tingling in my hands and feet I used ice booties and gloves and didn't have any neuropathy issues after that. My biggest challenge through Taxol were the unstoppable nose bleeds I got. I worked through most of AC, that was more challenging - but manageable and you'll get through it! Switched my chemo day to Wednesday for AC which turned out to be a good move, spent most of the weekend on the couch and let myself be a slug, then was back to work on Monday. I feel pretty good overall, still have soreness in my shoulder/radiated skin and joint pain from the zoladex/letrozole - and of course, some anxiety about recurrence. But mostly I chase that away with gratitude for the miracle of modern medicine (got my covid vax, too) - and I remind myself that every day that I'm here is a day closer to some new, incredible cancer treatments, even if it does come back. Please remind us if you need more interaction - I know there are boards for each different stage but I found myself not interacting there so much as here. And let us know how it's going or any questions you have.
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Hiya, Bklynstoops, and thanks for the support! I'm relieved that my Taxol experience has been easy so far; I think the most difficult infusion was the first one. I'm sure my anxiety added to that. I am prone to nosebleeds, especially in winter when the air is dry... but strangely I haven't had any (so far). I can count on a "bathroom emergency" after dinner on the day of chemo, but that's pretty much it. Sometimes I get a touch of heartburn, too.
I'm retired so I don't have to worry about going to work but I'd have no problem with it if I did, at least with Taxol. I have read so much about the SEs with AC that I have really built that up in my head, though my oncologist told me that fully 30% of his patients "cruise right through it." I really hope I can fall in a lucky percentage for a change, haha.
I love the interaction on the IBC thread and I wish it had more participation, though I certainly don't wish IBC on anyone. It's just so comforting to "talk" to people who have walked this path I'm on, and I know there are bound to be lurkers who are comforted, too. It is such a terrifying diagnosis that a person is just shell-shocked with the isolation of it all.
So my gratitude to those of you still showing up; it means so much to me. I hope you all continue to be well, including those still in treatment. We can do this.
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Where are all the IBCers???
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Good question LW422. One answer could be that those who have finished major treatments have moved on. And then there is the no news is good news possibility. I always check in here and answer questions if I can. Hope you are doing well.
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I'm here too, LW422! As you're aware, IBC isn't at all common, and as TT said, those of us who have found our way here may be finished with active treatment and not contributing as much. But please feel welcome here, and post questions and concerns that come up. There are a lot of us who are well and thriving, and when I was slogging through treatment, that awareness gave me hope.
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Thanks, TravelText. I'm doing very well; 7 Taxol treatments done and 5 to go! I am grateful that I have had no significant SEs at all so far. My initial hysterics have calmed a bit, but I'm sure I'll have them again before I start each new phase of treatment.
SBE--I know that many people want to move on when treatment is done and just get on with life. Can't say I blame 'em. I see a few IBCers posting in other areas of the forum and wish they'd stop by here occasionally.
Glad to hear from you both.
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Oh, and I was going to ask about one thing that I wonder if anyone can shed some light on. I've wondered exactly what is the difference between IBC and "skin mets?" I asked my MO and he kind of danced around the question and I still don't get it.
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LW422. That's a really good question. Your MO skated around this question because it confuses even doctors. For a start, IBC is a clinical diagnosis. In my case, I was diagnosed after a few months of presenting to my PCP. What finally prompted her to send me to the breast surgeon was the angry red inflammation. The surgeon took one look at it and said, sorry, I cant operate when it's like that, you'll need neo-adjuvant treatment. So she sent me off to the MO who started me on a pretty aggressive chemo regimen. The chemo appeared to shrink the tumor and certainly got the inflammation under control. The surgeon then did her work, increuding the removal of all the lymph nodes on the Mx side. Because I didn't achieve pCR, she sent me to the radiologist who said, consider this as insurance, because you obviously have residual cancer. So, 33 doses later I'd done with major treatments and was prescribed Tamoxifen. That all happened seven years ago and I'm still NED for bc (and for pc which I acquired a couple of years after the bc.
I digress. So, skin mets can only be diagnosed with a skin punch biopsy. I didn't have one, rather everyone just said, IBC.
Did you have a punch biopsy?
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Yes, I had two skin punch biopsies... "no evidence of carcinoma" in either. That was a big question I had at the time because I thought the skin punch was the definitive determination of IBC. I was incorrect, lol.
My MO talked more about the typical IDC or whatever expanding until it got into (or ulcerated through) the skin in answer to my "what's the diff?" question.
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LW422, IBC presents initially with clinical evidence of cancer emboli clogging up the lymphatic channels in the skin. Breast cancer cells have spread throughout the dermal lymphatics of the skin of the breast and result in the typical presentation of redness, swelling, peau d'orange texture. IBC may be diagnosed at Stage III.
Skin mets, also called cutaneous metastasis, develop when breast cancer cells metastasize to the skin from the original, primary breast cancer site and cause external lesions. The clinical presentation can be similar to IBC, but can also look like small or large nodules, a raised rash, or ulcerations in the skin. They can appear on the mastectomy scar, chest wall, arm, back, or other places of the body. Metastasis to the skin is considered Stage IV.
The difference here is the fact that IBC is the primary cancer site. Skin metastasis is the distant spread (although it may not be very far away from the primary site). Unlike IBC, metastasis to the skin is very rarely the first sign of breast cancer.
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SBE--I have read those explanations, and my doctor mentioned the "primary versus distant," etc. I still wonder though... say a woman has BC and isn't aware of it, and develops local skin mets presenting with all the same symptoms as IBC. She goes to a doctor and gets a "clinical" Dx of IBC. So at that point, she HAS IBC because a clinical diagnosis has been made. Since it is subjective on the doctor's part, I can see how this could happen. In fact, I have seen many times on this forum people presenting with the exact symptoms of peau d'orange, heat, itching, redness, inverted nipple, etc. and NOT being diagnosed with IBC. I don't know why this just bugs me. It just seems like the luck of the draw and a doctor's "opinion."
I've been told that IBC is never less than Stage 3 because it has "moved to the skin," but if it has no lump, where did it originate? So many questions!! (My skin punch biopsies were negative for cancer.)
In my case, I have a less than 1 cm lump of IDC, and a faint pink bruise on my breast. I did have extreme sensitivity in that nipple as well and a bit of swelling. At the time of my diagnosis I had no other symptoms nor any of the "fast spreading" redness, etc. The only changes in my breast appearance came after all the biopsies (4 of them) and other imaging, etc.
So I have no problem with my diagnosis or the treatment; I figure the more aggressive the treatment, the better. I'm just not convinced that there is a definitive determination of IBC without a specific lab/biopsy result to verify that diagnosis.
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LW422, reading that you are doing great on Taxol gives me so much hope!!! Please keep us posted on your progress. Really appreciate it. The reason I went to my doc was new noticeable lump plus some swelling and orange peel to my Left breast. Took too many weeks to get an appointment for the US. Weird thing is that the swelling is down and I haven't started any treatments yet. Just eating tons of broccoli, juicing, etc. As you know, my skin biopsy came out positive, which made the Radiologist irrevocably recommend Masectomy. I haven't seen my surgeon since the positive test results, so no official diagnosis but I'm sure it's IBC (new surgeon said it did not look like it, old surgeon said it looks like it (was more swollen before when she ordered the skin biopsy). Meeting MO tomorrow for my care plan. Also looking for a Naturalpath/Integrative Oncology complementary care nearby. Hoping for natural path care to deal with side effects and keep body healthy as possible during treatment. Best wishes to LW422 and all of you!
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Hi again, Mamacure. Sorry you have to join this group but we're happy to have you... if that makes sense. I see you are in the beautiful PNW; my oldest son lives in Oregon.
Yes, I'm very happy to say that Taxol has been very easy for me so far, after 7 treatments I have had no significant SEs. I do ice my hands and feet, and suck on ice chips during the Taxol infusion. I'm hoping to avoid neuropathy and maybe keep all my nails!! So far, so good. The ice chips seem to help a lot, too... I have not had any mouth sores nor much loss of taste, though some things do taste a little weird or "salty."
There's not a lot of activity in the IBC section but hopefully some of the others will show up. Good luck as you begin your treatment. Somehow I calmed down once I knew "the plan" and got started. Be sure your MO is aware of any supplements or natural remedies; my MO doesn't want me to take supplements other than a multi-vitamin.
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Hi LW422! I will definitely do ice chips (very prone to canker sores). Got Biotin rinse too. Also planning to order icing socks for hands & feet. Cold cap maybe too, not only to save some hair but to ‘cool’ my brain too. Whaaaat?!? Nails can fall off? OMG scary. Will make sure to tell MO of my natural remedies. I wonder if cryotherapy would be good..... scared to find out about the SEs of AC. Also afraid of ‘burns’ from radiation!! Scary stories. I used to live on OR as a child, now in WA state
. Sending you healing thoughts from PNW to TX0 -
Yes, people have their nails become discolored and loosen from the nail bed. Chemo is just one thrill after another. You can check out the "Weekly Taxol" thread if you start with Taxol, or there are other threads about the different types of chemo. People share their experience and what helps their SEs. Also check the monthly chemo threads; when you get started be sure to join the thread with others starting treatment at the same time. (My "group" is the Starting Chemo February 2021 thread.) All of those are in the Chemotherapy section of the forum.
I have had such an easy time of Taxol that I continue to be astonished... and SO grateful. I was terrified of chemo. And I can't tell you how much I dread AC...ugh. Some people get the AC first, then Taxol so it will depend on the plan your MO sets out for you.
Oh... and I didn't like the icing mitts for my hands. I always need to use my phone or handle the cup of ice chips, etc. so I got a regular ice bag and the nurses fill it with ice for me and I just hold it with both hands. Some people use frozen bottled water... just anything you can hold, but put down easily if you need to.
People here are so kind and helpful. Someone will always try to help answer questions and give encouragement when we need it.
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Thanks LW422! SEs are unreal for sure. Ugh.
Met with my MO today finally. She said my breast looked less inflamed than she expected.
Because of IBC, I am dx-ed at stage T4b(inflammatory)N1, overall stage IIIc triple negative BC (good candidate for neoadjuvant chemo).
That is a lot to take. Can not do surgery first because would be difficult at best because of the need to remove significant amount of skin. What the hell happened to me, ugh.
I think she plans on doing some Immunotherapy for triple neg part too. She is throwing massive chems at me. OMG. She said this is 'high risk' BC.....
Carboplatin & taxol for 4 cycles with carboplatin given every 3 wks and Taxol given weekly followed by AC every 3 weeks.
Permbrolizumab every 3 weeks thru-out chemo and continued 3 weeks for total of 1 year (based on data by New Eng Journal of Medicine 2/27/20 by P. Schmid) Keynote 522. Pathologic complete response rate of 65% vs. control of 51% (higher than any other published large study).
https://www.nejm.org/doi/full/10.1056/NEJMoa191054...
Getting Port next Wed and start chemo Thursday. She said I can drive myself which is good. Wow. Here we go. Pray for me please everyone.
MO said with this regimen, very low chance of saving hair with cold cap, but I can still try it. I shud lose hair on day 17.
Good news: Got J&J Covid vaccine today. MO said yes I should get it. Wishing LW422 well and everyone who is reading this. Let's keep fighting!
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Sounds like you are all set to begin treatment, mamacure. In your spare time you might read this entire thread; there's a lot of good information to be had (if you haven't already).
I'm a patient at MD Anderson's IBC Clinic in Houston and will be having a mastectomy next summer after chemo, then radiation. Treatment for IBC is fairly standard with surgery after chemo, and yes... it's high-risk and aggressive cancer. But we can do this!
Hope all the other IBCers will post soon and let us know how they're doing.
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Mamacure: sounds like you have done your homework! I can say I was not that brave to research that early in diagnosis. I had 6- TCHP treatments prior to surgery. Was not happy when I was told "no surgery" til neoadjuvant chemo completed. Was very confident with my choice of Emory, Winship Cancer Institute in Atlanta and more than happy to leave it in there hands. Did finally get up enough nerve to research just to verify what I was being told. Had surgery in 1/2021 (pCR) and started RADS, which I'm told and have verified through research has better survival rate. 2 more RADS to go ! some open wounds, though better than I expected since I had 25 left chest RADS with BOLUS. completing Boost tx. to incision now. Started targeted therapy with HP in 2/21 also for an additional 12 treatments. Really no SE from that yet. I have learned to calm down and live each day at a time. Consider myself blessed that no cancer found at surgery, both breast and 7 lymph nodes. I remind myself when dealing with SE that the goal is cure!
Looking forward to the day all treatment is completed and life is not evolving around medical appointments. Hope I feel the same when it happens!
Best of luck to everyone. Keeping you in my thoughts and prayers!
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Thank you DeniseML! So great to hear you had no cancer found at surgery! Amazing! Hope the rest of your RADS go well and the sores heal fast. Stories like yours really give us hope
Also gives me much reassurance with my treatment plan.May I ask if Radiation techs used Mepitel sheets for radiation? Are the open sores from radiation? Also, what type of Immuno therapy are you doing?
Thank you again and please keep us posted as you near completion of your treatments. I can not wait to be there one year from now!
Thinking of you LW422, hope your chemo continues to go well.
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Mammacure, you must go for the Mepitel. It was trialed on me here in Australia seven years ago and was a great success for me and nearly all the others in the trial. I had the Bolus, which brings the rads closer to the skin, as well. I still had a red chest, but no open sores.
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mamacure: not certain exactly what was used for bolus during RADS. Since it was not explained prior to RADS and explanations were not in-depth. Just know a gel-like sheet was placed across chest , lined up to markers after rads targeting Nodes ( internal mammary, axillary, & clavicular) 2 passes across left chest each time for 25 of 30 treatments. Last 5 were boost to incision. The skin became very red but remained intact until week 5. A magic marker was used on skin with clear adhesive bandage over it .I was unable to provide any skin care to the area so when the clear bandage became loose the tech removed it to replace. Skin came with it. Also, by the end of all RAD (4/7) the area surrounding incision started to break-down. Wound is slowly shrinking in size . Oddly enough I find applying an abundance of Aquaphor at night is helping more than all the other products I was given to try ( hydrogel, honey based ointment, Silvadene, Aloe gel) I think it's because they eventually dry and clothing rubbing on it or removing non-stick bandage re-opened wounds.
I am now only getting Herceptin & Perjeta for targeted immunotherapy. I was given this with chemo prior to mastectomy- the MAGIC COMBINATION for me! I do have significant neuropathy in feet, since neoadjuvant therapy, but no progression with just H & P infusions so I'll continue with both
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Hi Everyone, unfortunately it looks like my wife Nicole will be joining the IBC family. Thought it was IDC but in the MO consult note the MO mentioned IBC. ER-/HR-/HER2+. Chemo treatment will start tentatively April 29. Been posting in the HER2+ section until I went over doctor's notes more closely.
Looks like HER2+ IBC treatment is similar to IDC. According to MD Anderson's IBC treatment they recommend ACTHP first and TCHP as alternative. There are pros and cons of each.Msged @DeniseML as Denise is HER2+ and did TCHP. Looks like Herceptin + Perjeta is the magic combination to attack this along with chemo.
Now the decision is to which's regiment to go with. AC chemo has increased chance of Heart issues and leukaemia.
As we are in Canada, we will most likely book a virtual appt with MD Anderson to get a second opinion.
Wife's right breast is really tender and hurting, don't want to delay treatment. Wish we can get the treatment started yesterday
Peter
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pchyen: Do you know the Ki67 rate? This indicates the proliferation rate. The higher the number the quicker the cancer cells are dividing. Timing is definitely a big consideration in obtaining treatment. Please keep in touch.
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Hi Denise, the lab didn't do KI67 test. However the mitotic activity was noted as “low" in the biopsy report, not sure if that means anything.But any waiting is just stress. We have been preparing for chemo, now just waiting for a port to be put in, echocardiogram.
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Pchyen,
Hopefully the echo and port placement will be completed soon, if not already. The waiting is super stressful, I had delays and I felt like the clock was ticking fast. But as soon as I had my Echo and port, things moved very quickly and I start chemo right away.
Let us know how things are progressing....hang in there!
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Thank you NatureYogi. Wife got her port today. Chemo is scheduled to start next Thursday.
Had the nurse talk to MO about the “Inflammatory Breast Cancer” in my wife’s notes and MO said it is not inflammatory. Now I am totally confused. Will get clarification next Tuesday during our consult. Either way I believe my wife Nicole will be doing DD ACTH+P treatment.
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