IBC lounge: roll call, support and just a good place to hang out
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TT, I'm so glad that the operation went well and everything is out. Do you have to take medication or there're other treatments to follow?
Val, I hear ya about the fatigue. I guess we need to give our body time.
Meadow, did the new onc say that they're going to change the monitoring regime? How does that work with the insurance company? Discuss it with her and express your concerns. My onc doesn't do any extra scans.
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A short update from me. I'm in such a hurry to get things back to normal and determined not to lose any more time that I'm doing too much. But I get tired and have to slow down. I didn't really want to start working but the longer I'm away the more difficult becomes to go back. Anyhow, now it's decided that I go twice for 2 hours every week to work and they have to find me something easy to do. I feel useless but that's another story.
I've started a course interior styling, something I always wanted to do and it makes me really happy. I try to go out, meet friends, finally go for shopping (I need new clothes without decollete) but I also take it easy with the activities and don't overdo it.
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Hooray Moreshoes for doing something that makes you happy and keeps you busy. Yes we collapse afterwards, but the effort is worth it.
My MO does not do extra scans either. It just so happened due to the stroke I had extra ones. shopping, I so need to do, it seems like all my clothes dip too low. I was no a 'siren' before but good grief. even my t-shirts were deep v necked.
Shawls, and turtlenecks are my new friend.I went out to dinner with friends, and no prosthesis ( i'm not doing recon) my t-neck and shawl and no one missed my breasts. Or at least they didnt say anything. lol...My new look.
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MoreShoes, that's certainly a tentative return to work plan and I can see why you might feel useless. At least it's a toe in the door (if that's what you want). Or are you considering a new career post treatment?
Valstim, love your sense of humor and your new clothing regimen. How liberating.
My treatment is over now, but there's some continence and ED rehab. Apparently patience is a virtue with this.
I can't help thinking about the differences between BC and PC. It took me seven months to get NED with BC and seven days to get NED with PC. Hmmm.
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Wow, never thought of it that way Traveltext. 7 days. Hooray for you. Boo for the patience, but they do say patience is a virtue? So you should be well on your way to complete virtuousness (if that is even a word, but according to my scrabble board it works). Hello to all. Pleasant thoughts to all.
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Val, I have not had recon and only had my right breast removed. Was not offered prophylactic mastectomy. As a stage IV, doubtful I would bother now with another surgery. I will say, I go without prosthetic for the right breast. I don't notice people staring at my chest even though I only have one breast. I would wear it if my clothes needed it, otherwise, cannot be bothered. I have the knitted knockers if I do need an easy prosthetic. They are knit and more comfortable than the silicone ones. I am more comfortable with just the one. Don't want reconstruction either. WAY too much work with a TE implant, getting that filled over months before another surgery. No thanks. I think we assume people are going to stare, but most do not. Glad your flat is working out so well.
TT, too bad the timeframe could not be the same for NED with BC for sure. Glad you are coming along. The other things will come in time, but I do understand the desire for it all to work right now. Good luck.
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Val, I look awful with a turtleneck and don't like shawls. So it's boat neck blouses for me. I still use the protheses I got from the hospital. Haven't been for silicon ones cause I still have fluid in the right side. I don't dare to go flat.
TT, hooray! It's already NED, thank goodness!
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Btw I don't plan to change career. I'm doing the course just for myself, to keep me busy and to ease myself into learning again. The other day I had to read, comprehend and answer questions from one page text. It took me ONE hour. I was reading one sentence, then staring out of the window for 2 minutes. I just couldn't concentrate. My brain has suffered a lot.
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Mara I love the Knitted knockers. They have been a life saver. So easy to wear. Someone on BCO mentioned them before I had surgery. Glad I remembered.
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Awesome, They are great for sure.
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Hi all ,
A funny thing happened me the first time I went swimming with my Aquaknocker. I hadn't thought about it being filled with like mesh material often used in the shower . Just as I took the plunge into the water millions of bubbles exploded onto the surface of the pool . . Looked like a bad case of wind! Thankfully only my husband and I in the small pool on holiday in September. Still laugh about it now .
On a more serious note , had 3rd Kadcyla yesterday. Can't see rash receding yet and I am having pain at times, mainly night , so occasional Oramorph needed. Hopefully by next cycle it'll kick in big style. The side effects are so much more tolerable than nasty taxols so far anyway. Going for an echo cardiogram on Friday. It's like having a job keeping track of all the appointments. Been in active treatment since Feb .
Best wishes to all,
Mini x
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Gosh Mini, February must seem like a long time ago. I can see from your medical history that you really have had plenty of chemo appointments. I'm hoping for you too that the Kadcyla kicks in reducing the rash soon. All the best wishes to you.
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Hello all! I just wanted to add what I recently learned about IBC. I posted previously about how my surgeon and oncologist disagreed on the inflammatory diagnosis. I saw my oncologist today, and I asked him a few questions.
1. Does IBC always start that way or can it "spread" into the skin. (Mine started with lump/hardening/swelling and then a month or 2 later after a biopsy I got the redness, and I have a 10 cm tumor of IDC). His answer was that any invasive breast cancer, if left untreated, can get to the point where it will spread to the skin. IBCusually will START in the skin though. Since mine did not start that way, he doesn't think it is true IBC. Many times invasive breast cancer will get inflammatory "features" that are hard to tell from true IBC because it is basically very similar in function; it just didn't start that way.
I have read the skin changes must happen quickly. It doesn't seem to detail if that quickness can be 2 months or not ...
2. Would the redness fluctuate/get better? Not usually. It would normally get worse/darker red.
Since mine had fluctuated a bit I was thinking maybe hormones. But he said it was much better than last time, which is why he thinks it is not true IBC. It will not change the chemo I am on, but it would change the surgeon's plan (reconstruction right away or not and the amount or types of radiation therapy after surgery). So he will leave it up to the surgeon.
Note: I was taking CBD Oil for about 7 days before this really obvious lightening of redness, and after my 1st treatment of 1-dose of dexamethasone (steroid), irinotecan and a new study drug (a parp inhibitor called talazoparib) the only redness really left is a bit on the side. I had a good 10 cm x 11 cm area of redness going on here ... so maybe mine wasn't true IBC, but if it was, that is amazing. It could have been just inflammation, though, especially since dexamethasone would help with that. CBD oil as well.
Just a few things I found interesting. Maybe it will help.
I am going to post on the other board about the study trial I am in. It looks pretty good for TNBC patients , and I think IBC patients are accepted too. May want to check though. --Edited to change "methotrexate" to "dexamethasone." Not sure why I got those mixed up.
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Hi lovelooms When I was diagnosed with inflammatory breast cancer I had no redness. Never did and I was told there are two types. My breast was very swollen inverted nipple plus there were two large tumors. I did have itching all summer so that made sense. The symptoms seem to appear overnight. With the tnbc and everything else going on, I just trusted my doc. Oh I did have to go through the whole (there's an infection) stage. I took antibiotics for a week with no change.I did request my pathology result. I'll pick them up later this month. I hope that helps you.
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Meadow, did you ever say what happened with your new doctor? On what kind of follow up did you agree? Sorry if you've already post about it and I've missed it.
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Hi Moreshoes, thanks for thinking of me. I had 3 CT scans, chest, abdomen and pelvis, all clear for cancer, but there is an abnormal place in my stomach that they have ordered an upper GI scan for. But today had a follow-up with the Nurse Practitioner, and I am having under arm tenderness , swelling of lymph under arm and color bone, so she ordered scans of my soft tissue areas there. She had gone over my survivorship stuff, I guess since I am new to her, and pointed out my Onc wanting to change my staging from 4 to 3. I said, " I am having a GI scan, a new scan, and she wants to change everything to 3? Before results?" I told her let's get all these tests back, then talk about it. I do not remember ever seeing my Ki-67 score before . ...it was high, 95%, can you and anyone else share what theirs' was? just curious . Hoping you are good!
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LovesLoons and jcpriest, I've read about so many different versions of IBC on this thread and the previous IBC thread to understand that the only common point in IBC is the "I". There is always inflammatory dermal invasion. Sometimes there are lumps, sometimes not. Since IBC is a clinical diagnosis, not a pathology finding, there is no specific cellular cancer type that can be identified under a microscope as inflammatory breast cancer. It's the behavior of the cancer that makes it IBC.
Meadow, Good news on those few scans and I hope the GI scan is similar. Agree that you should await the extra scans before restaging. You are advocating well for yourself, and I do hope you get answers to your question.
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Thanks TT!
Lovesloons, thank you for the great question , TT, thanks for the great answers
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The Huff Post has published an article on IBC HERE.
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Thanks Traveltext for the article. I hope your test results are positive Meadow.
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Meadow, I too am hoping your other tests are clear. Good luck!
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Thanks for all the info everyone
I am amazed how many varieties there are. My redness was almost completely gone yesterday-- and I think it could have been from the dexamethasone (accidentally called it Methotrexate somewhere). I was given a dose with my Irinotecan. It is coming back today a bit so trying the CBD oil to see if that clears it. Very strange thing IBC. Wish they would do more studies on it. 0__0
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Hi All fellow IBC'ers - I haven't posted here for a while but I always read and keep you all in my thoughts.
I have just been dx with mets to the liver. However, what is really surprising - its ER+, 95%! So is not the IBC TN I had DX in Nov 2013 after all.
Trying to get my head around this and going on ANASTROZOLE (Arimidex). I know nothing about hormone positive BC, so am going to read up and get myself educated.
Best wishes to all.
Sarah
edited to add a hug!
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Scwilly, sorry to hear about the mets dx. Glad to hear the ER+ though, means more drugs to keep you stable, and not just chemo. It will take a long time to adjust.
I was dx with single brain met to my brain lining in July. Had brain sugery to remove tumour, brain rads as well. They were riugh. No cancer from neck down for me. Am now on lifelong infusions, not all chemo, to keep the body clear.
Good luck to you.
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Bad news about the liver mets, but good news re the ER+ Scwilly,. Are you optimistic after your reading?
Mara, are the infusions the full extent of your current treatment?
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TT, yes that is the full treatment. I am dropping the taxol due to very bad reaction and plan to continue with Herceptin/Perjeta. I am unable to eat, do anything beyond lying down currently. Had a similar reaction last time had taxol so no doubt due to the taxol. Since I have no other mets from neck down , am comfortable dropping taxol.
Radiation was the only treatment for my brain. Now it will be scanning to see if it worked or if other mets show up there. No other treatment for me than that.
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Funny with Taxol, some people handle it, some don't. In your case, it's good that it's not vital. Hope you can now get up and about and you really do need to start eating again.
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Mara and TT: Thanks for you best wishes. I am getting my head around my new treatment. I've been getting a lot of information from threads and this site. I have avoided getting a consult for. Dr Google as I'm sure that's going to confuse me. In particular I am avoiding all survival stats (as I'm a Data Analyst this is not my usual approach!) Hearing the experiences of others long term on hormonal tx is making me more confident on my tx plan. After a week on the ridiculously small Tablets (how on earth can anything this small be so effective) I have even been feeling less pain in my side. Whether this is coincidental or not - less pain is always welcome.
Mara: I wish you all clear scans from now on.
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Scwilly, so sorry to hear your news. Tamil can be tuff.Glad to hear from Mara,your so brave. I had my annual appointment with bladder doc. He found a tcc,papillary tumor .It was pretty good size and in a bad location,lip of the uretersorry if I am to grafick.Anyway they are a pest,but much better than bc. I am looking in the bright side. Will know more after the 13th of Dec. I hope your feeling better Traveltext.
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Hi all,
Just a quick update. Had my fourth Kadcyla infusion yesterday. Since it's for skin mets I can see they are definitely now beginning to respond. Less oozing, and becoming drier and outer margin has not increased in size. So my oncologist has scheduled more treatment on December 13th. Small steps... In the right direction!
Happy Thanksgiving to all my American friends on here. I may not post much but I find this board an invaluable source of support and information. We walk in each other's shoes.
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