IBC lounge: roll call, support and just a good place to hang out
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IntegraGirl-I'm happy you reached out to this site-welcome! I don't "check in" much but I've found a great deal of information and support here. Since my 3rd reoccurrence in Dec. (started in 2010 and has been 'on again/off again since that time-this time to IBC), I can honestly say, I've had similar feelings and can relate to where you are. All I can say, is to try to take one day at a time and let yourself feel a bit down when necessary but then pull yourself right back out of it and get on with living (I know it's easier said than done!). But if this makes you feel a bit more optimistic, back in Dec. I figured I'd been done working and back on hard core chemo. Along comes this Kadcyla drug and BAM! My disease becomes manageable once again. Kadcyla works and I never had to resign. In fact, my school year starts again next week & I'll be there (I'm a school social worker). So... I wish you all the best with the surgery and hang in there
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The eclipse was about 75 percent where I am in Ontario, Canada. Just looked like a cloudy day here. We are supposed to have total darkness with the next one in 2024 I believe.
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Thanks Fran! So good that you found something that is working for you and allowing you to live your life. What a roller coaster it can be.
I've worked throughout as my work and my clients are the only things keeping me sane. I find keeping things as normal as possible is important for me.
My MO has been on a research sabbatical since July and the replacement MOs were hopeless. I asked one of them about Xeloda at my last appointment and she poo-pooed me saying why even think of that when you're having a compete response to chemo? Fortunately, my MO has a doctor who works with him who is not a MO but she's a very good doctor. She called me yesterday to talk about my US results and brought up Xeloda as an option. Anyway, my MO is back at the beginning of October and we'll see what options there are.
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IntegraGirl, welcome! You're going to find great support here. After getting cancer for three times, all TN, the last one IBC, I can't really be a cheerleader and say things like: yeah, go for it, you can do it, you'll be fine, keep on fighting. All I can say is that during the summer of 2016, I was going through some cruel rads, was writing thank you letters to my friends and was preparing to die. Summer of 2017, I went on vacation to the USA (it has always been my dream), walked a LOT, got used to the prostheses and I'm living my life.
Just as Fran said, take one step at the time and be gentle with yourself.
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Holey moley, another article on my case. This time with an IBC spin: https://www.theibcnetwork.org/rodritchie/
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Great article, Traveltext! We do such a disservice to men by carrying such a "PINK" banner. By now we're all aware of the possibility of cancer in women's breasts, but most of the world doesn't even know men HAVE breasts, much less that they can get breast cancer. Thank you for being out there.
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Hi all,
I'd like to see this forum going for the support. I just started radiation yesterday. My tumour did not respond to chemo at all. I am ER/P+ HER2- which apparently is not good with IBC. Anyone out there with this cocktail?
Sue
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Welcome Sue. This forum fires up when we get a new member and when we all report in with what's happening.
When you say your tumour didn't respond to chemo at all, did it not even shrink it? Many of us here didn't get a complete pathological response to the chemo, but surgery obviously removes the tumour. Generally radiation is used as a back up. Was this not the case with you?
It's not true that ER/P+ HER2- is not good with IBC. It's the best expression to have with all breast cancers.
A couple more questions: were your margins clear, and did you have lymph node involvement?
Anyway, hang around and keep us posted
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Hi, I did have clear margins, but one was only 1mm and the surgeons like 2mm. My tumour grew 2 cm from the time diagnosed until they removed it, after chemo, so not sure when it grew, but during that time. I have 8 lymph nodes involved, six more so. I had 17 lymph nodes removed.
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Hello Sue
Welcome. Do give us more info. Many of us had positive nodes, residual tumor etc. Radiation is our mop up to give us a guarantee. It's especially important with IBC. As for types, I have triple negative. According to a lot of information, some new, some old, it's the absolute worst. But here I am 2 years from diagnosis and NED.
Which chemo cocktail did you use?
So please reach out to us, we are here. Though we may go silent sometimes, know that we care.
Val
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Yes, no news is good news here. But Val's right, we're here when needed, so keep coming back.
Sue, did you have a PET scan?
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Hello Sue. Chemo had little effect on my IBC, radiation had not much effect either. They did as much as they could, including combining radiation and chemo at the same time, and using extra super frequent and strong chemo, then removed the breast. Not surprisingly with such little response to the chemo, the cancer returned after 2.5 years, and in the IBC form in both breasts. It did return in a more indolent form however, and more responsive to estrogen. No chemo or radiation or surgery in the works now, just hormone and targeted therapy. I'm not impressed that it is working, but its been 10 months and I'm still here. Hang in there !
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Hello all, posting to let you know of a new association "Inflammatory Breast Cancer Canada - Cancer du sein inflammatory Canada" whose objective is advocacy for IBC patients and survivors and also to inform you about its online Facebook support group. The support group went live on Oct 9, 2017 and currently has 34 members. The association is slowly being set up and will be fully functional I expect by early 2018. I would strongly encourage anyone diagnosed with IBC in Canada to Like and Follow our Facebook page and to join the support group. We are working on a mapping exercise to figure out who is treating IBC in Canada and whether any research is being done. Note that the support group also welcomes women from countries that don't have well-established IBC support networks. Best wishes, Yasemin Heinbecker
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Hi everyone,
Haven't posted in a while. Having a tough time with bleeding in the skin mets which are now classed as a fungating tumour. So, to cut a long story short, tried tranexamic acid tablets but had such bad GI side effects couldn't leave house for fear of needing to dash to the toilet. Had to stop them. Next plan is for me to have Adrenaline ampoules which I will use with a swab and apply topically for bleeding that doesn't stop. I want to stay as active as possible and meet up with my friends and work colleagues so need to get on top of this latest challenge. Radiotherapy is not an option for me. I asked my oncologist and it was a definite no.
Hope you are all doing well.
Mini x
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Hey Mini, good to hear from you but so sorry to hear about the latest skin mets drama. How extensive are they? Do the Adrenaline ampoules appear to be working?
Amarantha, I missed your post, but great that you are coming up for 12 months anniversary since Stage 4 diagnosis. Whatdo you mean you're "not impressed that it's working"? Surely this is a good thing?
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Traveltext ! thank you so much for noticing my post. Yes ! I not impressed that the Afinitor/Aromasine treatment was working, because I was sure that the skin infiltration was growing worse every month on the site of the scar. The PET scan did show almost NED last month, however the skin infiltration was clearly not better in my sense of things. It is now finally bad enough to actually alarm my onco, and the right breast now looks just like the left one did at the beginning of IBC. She was kind of stumped. Anyhow, she is considering this a clinical failure at month ten, and we are moving on to Ibrance and Faslodex. I basically begged to have biopsies just in case this cancer has veered back into its more virulent IBC form. Also and a PET scan will happen on the 31st of October. On the other hand, I feel great, have some energy, (have two weeks off all drugs, and am loving it) and feeling quite positive. I hope this ability to remain positive and keep laughing continues. It's been such a godsend.
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Amarantha. Now I understand. Be sure to let us know how the blood test and PET go. You're right positivity and laughter, keep on that track!
We've just had our first male Breast Cancer Awareness Day hear in Australia. Remember my bc mets pal Rob who posted here a while back, well he got featured on the front page of an important regional newspaper. Woohoo.
http://www.illawarramercury.com.au/story/5000764/w...
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Hello. I am new to this site and hope I am posting in the right section! I am just looking for some advice and support. I am only 26 years old and have a two year old son.
One month ago I started getting sharp pain in my left breast. A couple weeks later and I had spontaneous blood discharging from my nipple. One week after this, a small red patch appeared. Within 48 hours of the first red spot, half of my breast was red.
Long story short, I have seen the OB multiple times throughout the symptoms. I was prescribed the strongest antibiotics including an anti-viral(in case of shingles), an anti fungal and an anti-bacterial (mastitis) all within a few days.
None of the medications have worked and the redness has no decreased nor has the sharp pains.
Should I be worried and how do I get my doctor to take it seriously? Thank you. You are all so strong and have amazing stories, truely.
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KorMom, Welcome. Sorry to hear about your IBC concerns. There is another dorm for those with concerns and I suggest you post there for advice. Once you have a diagnosis do come here for support.
In any case, your youth means IBC is unlikely, but you should of course continue to seek medical advice until you are happy with the outcome.
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Thank you for taking the time to respond! I think I found the appropriate thread now. So sorry, just getting used to the site.
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Hello friends, how are you Kicks, Meadow, TT,? i know its been long time since my post, but i am over the moon. I had a follow up to my IBC,( i was DX in 2013 stage III B,) i had scans last week ,my Dr told me not to bother coming back, according to all the specialists that have seen me, they claim i am CURED...So here is hope to all IBC folk out there, it is curable! never give up hope..
Love..Jess
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Great to hear your good news Jessozzie. I'd say stay on the lookout for a recurrence regardless of what your doctor says about coming back and take the "cure" prognosis to mean NED. Are you on hormone blockers?
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Hi TT, given my age( i am over 80), and no progression since i had my chemo over 4 years ago and i had clear PCR the best thay had seen in IBC, clear margins,and no nodes involved, they felt thats a good recipe for it to unlikely return, ofcourse they said to keep an eye out in the future for changes to mastectomy scar and to come back yearly for scans just for peace of mind.i am not on hormone blockers, i did have 18 rounds of Herceptin back in 2013 when DX, what they hinted, given my age, that something else will get me before this does...
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Jessozzie, huge congratulations! You have scans every year? Do you mean MRI, CT, or PET/CT?
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HI Jessozzie - think about you so often. Such fantastic news from you!
Me - I have no 'complaints' of any consequence to be concerned about (other than just getting older - 71 now
). Still NED 8 yrs after DX. When I 'hit' a yr post DX, all my Drs told me that they never expected to make it to a year - FOOLED THEM!
Don't stay away for so long - miss you!
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Hi sbelizabeth,in your question to scans, i have ultra/CT in chest area and bloods,they simple said its my choice if i wish to have them yearly,because of my clear margins after mastectomy,they really felt it is unlikely to return, the head oncologist in IBC said after 4 years of NED the odds are slim to return, it normally progresses after the first 2 years IF it does progress,..
I recall the the morning when i woke to this orange peel, warm hard breast, inverted nipple. i had no idea what to think, i called my family doctor and explained it, thank god he knew of IBC, as many doctors suspect mastitis and bites,and time is vital with this, many IBC people get misdiagnosed and then its stage 4...He booked me to see the oncologist that very evening,i was in a chemo chair that night..he told me are you ready to fight this fight. They told me what would happen, i was given taxotere, herceptin, and the next week Doxorubicin he had the mixture of chemo for best results. and after all the chemo 6 months,i had the mastectomy,
My Onco is my hero,i was so fortunate that he knew IBC as many Doctors dont..
As Kicks said she has been NED for many years, my oncologist would tell her to party,I know all the world has good IBC doctors, i like to claim here in my Town we have one the worlds best Drs in IBC.. We all know nothing is certain, but giving us hope is all we have to go with. Oh Kicks and all you lovely people, how i wish we all could be together in person, i think we could paint the town very red. .ha ha
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Thanks for sharing your diagnosis story Jessozzie. It took me three months to convince my GP to send me for an ultrasound, although the IBC symptoms only appeared at the end of this time. The breast surgeon took one look at my chest and sent me to the onc to get chemo started. Like you, I was told after treatment that IBC progression generally happens in the first couple of years after which the chances diminish with time. Like you, I don't assume anything will or won't happen, rather that the comprehensive treatment I received might just serve me well. Certainly, Kicks serves as a mentor here!
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Jessozzie -If I could get 'down under' (where I love to go and Hubby was able get to Perth a few times when USN before he retired) we would definately 'paint the town RED!
It was my PA of 20+ yrs who immediately got me in for new mammo that afternoon which turned into an US and biopsies that afternoon . I only had an enlarged node but she wanted to be sure. At 8 the next morning I got the call from Radiologist with the path. report - IBC.
For me, my TX plan was very different than most other IBCers. I did neoadjuvant and adjuvant chemo. The idea (from both Chemo Dr and Surgeon) was to do neoadjuvant Chemo (4DD A/C) to try to get 'it' to form a 'lump' with margins and shrink so 'it' could be gotten out surgically 2 weeks after last A.C. It did what was hoped for. A CPR was never the idea - just to get 'it' where Surgeon had a 'chance' of getting 'it' out. Then 3 weeks post UMX did adjuvant chemo (12 weekly Taxol) to 'mop up' any missed. Makes sense to me - get where surgery can get 'it' out and then 'clean up' if it is needed to be sure. Made a lot of sense to me - get 'it' to where surgery has a chance of getting 'it' out and then a follow up. Then rads another back up.
As Travel text said - I don't assume that anything will or won't every happen. There are no guarantees with anything in life so live every moment to the utmost we, individually, can.
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Hi all,
I've gotten a chance to come back. Sbelizabeth, Kicks, Meadow, Jessozzie, Travel Text (you're a hunk in my book) and everyone else, I've missed you. I realized I went through my treatment relying on understanding everything intellectually. So, between the seqeulae of my treatment and my emotions finally kicking in, I was a wreck. Then my DP, Deborah, was in hospital for 6 months of 2016; appeared to be okay but then had a stroke this last Easter which profoundly altered her personality. It didn't help that 2 days after her stroke we had a windstorm that blew a tree 300 yards onto and through our roof and into two interior rooms. And, of course we had lead paint — yes We had had it abated but abatement doesn't include punching holes through ceilings. We're still having work done. Deborah's had to stay with her sister because she's now on O2 but I stayed to supervise and to feed our herd of semi-feral cats.
So here I be. It has been lonely without all of you. I did write another paper (not finished) on hair loss and conceptualizations of the feminine and the meaning of the word “woman ."
I'm glad everyone is mostly okay and to those who are new here, IBC can be beat: I'm starting my third year of being cancer free.
I promise I'll be around more.
Love,
bride
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Oh bride, you're back, good on you. And back with some good stories I can see from your recent posts. Sorry to hear that your DP had a stroke, this can be a debilitating thing to have and I hope her old self returns. I had a hemorrhagic stroke 13 years ago and just lost some vision. A few weeks ago I had an ischemic one, again leaving only vision issues that I'm working on restoring. I'm thinking two strokes and two cancers is enough for now. How scary was your storm! What does getting rid of lead paint involve?
When you've finished your paper, let me know since there's some new places to publish thoughtful essays on bc topics these days. If you're on Facebook, check out The Underbelly. There's a buch of feisty gals pumping out all kind of interesting articles. And Twitter has a lot happening under #bcsm.
Really good to hear that you're passing milestones with this stupid disease.
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