IBC lounge: roll call, support and just a good place to hang out
Comments
-
Traveltext- I'm so very glad to hear that the conference was both informative and enjoyable. I know our online group will definitely be using you as a resource with all the information you have gathered! Safe travels home!!!!
0 -
Traveltext what a great group of people, I'm psyched (do people still say that ?) that you are out there advocating for us all.
I have just two more days (of mental torture) waiting to see my oncologist after my five week ordeal of chemo-radiation. I'm dying to see what she will have to say.
0 -
Not sure anyone still says psyched amarantha, but so what. How does your breast feel now? How does it look? Obviously your surgeon wants to operate. Be sure to ask for him/her to be there with the oncologist when the decision is to be made. Are you able to get pain relief meanwhile?
0 -
Hi TT, the breast is still all red, very hard and swollen, although a bit whiter and softer near the edges.
I have a meeting with the surgeon but not until the 30th of August, the radiologist wants us to wait a full month before showing it to the surgeon to see if he thinks surgery is possible (he did have a meeting with him last week and the oncologist), because at this point surgery is still out of the question.
I am hoping the oncologist will be more optimistic, she always is. And hoping that in four weeks it will not be ten times worse.
Meanwhile I think we MUST start doing something for the left side or I'm toast. And if they can't do surgery in the right breast I think I'm major toast.
My worst fear is that they will send me home and say we cannot do anything more. But they wouldn't do that, would they ? as long as I am willing to keep trying stuff ?
There is some pain in the breast, not a bother, but I'm still dragging from the weeks of chemo and radiation, still waking up slightly nauseated and headachy, and it is taking me much longer than I ever imagined to attack my piles and piles of housework. Husband helps when I ask him, but needs to be trained (isn't that cute) but he is 82 and often very tired, and I always feel I ought to spare him as much as possible. We work it out between the two of us, taking turns being miserable, ahahah.
0 -
Amarantha your courage is amazing. Courage does not mean we are not afraid, but we face the things we need to. I salute you.
Travel Text what a fantastic opportunity. So pleased it was a success and happy to see your picture.
Val
0 -
Hi all, catching up after a wonderful ten day vacation in Wyoming. I feel like a brand new person after recharging my batteries in beautiful nature!
TravelText I hope you enjoyed your visit here and found the conference productive. They gave you a lame answer for your question!!
Sweet Amarantha, I don't know what to say. You keep a wonderful attitude but I know that deep inside you must be going through hell and my heart aches for you. I hope that a few weeks to recover from the chemo and rads will have you feeling better and allow you to have the surgery. As for the housework, sometimes it's more than the two of you can handle alone,my husband and I had to learn that the hard way when he almost had a breakdown trying to care for me, the house and a full-time business. Hopefully you have people/family you can ask for help, or community resources? If you were in the US I could point you to some organizations, but I'm afraid I know nothing about what may be available in your country.
Waving hello to everyone else! And btw, I still say psyched hahaha!
0 -
Amarantha, what a dreadful trial your bc has turned into. One thing is for sure, they won’t do nothing and send you home. Their first priority must be to get your pain under control. You may need a port-a-cath for one or both sides so that pain relief drugs can be admistered on demand. And while I can understand them wanting to give the drugs time to work, I’d ask them what plan B is if the chemo is obviously not working. Be sure to ask every question you can think of, including clarification of your prognosis. It is your right as a patient to be given a clear plan for what could eventually become palliative care.
Welcome back LoriCA. Sounds like you are full of beans again. I had a great time with all those strong women and we all bonded as you can imagine. The one drawback was that my roommate Kirby, the other guy there, sleept hooked up to a sleep apnea machine that made a terrible racket quite often. I’m at LA Airport waiting for my flight to Brisbane.
Val, nice to hear from you
0 -
Traveltext, what a great opportunity to be there. I'm glad you enjoyed yourself and learned more things. I agree with Lori that they gave you a general answer to a very good question.
Amarantha, keep on fighting. I hope you get some decent answers from the oncologist.
I'm going to Greece for three weeks. Vacation with the whole family before I have again a scan and get confronted with this sh***y situation.
Enjoy every day my friends and if you need to cry, just do it.
0 -
MoreShoes, Traveltext, LoriCa, Valstim, Fran et al, thank you so much for your incredible support and encouragement. This is just a short note to say that I saw the oncologist, as expected, she was much more encouraging than the radiology doctor, and she succeeded in moving my rendez-vous with the surgeon up ten days, because she thought a month was much too long to wait. (me too !). I didn't get much in the way of answers from her, except that if surgery cannot happen there is no plan B. On the other hand as soon as surgery is done, and I am healed, then we can start up again in treating the other side probably going back to Halaven. I had a frank discussion with her about how hard it was to get the establishment in 2013 to admit that what I had was Inflammatory Breast Cancer in the other breast. Now - different doctors and five years later they have no problem declaring what is happening in the right breast as IBC, seeing how lightening fast it developed, there was no doubt about it, IBC, and how rare it is. It is like a different world in this hospital since five years ago. I don't think they would have given me different treatment if they had called it IBC, but maybe they would have not made me wait so long to begin treatment, and would have been less lackadaisical about the whole thing when the metastasis began. I fought and fought for recognition and it is almost as if that worked against me, the more I fought the less any one listened to me. Well that was then and now is now...
0 -
Hi, Amarantha, lovely to see you. I'm happy to hear you'll be seeing the surgeon sooner rather than later.
I first discovered the peau d'orange texture in my breast on September 29, 2011. I didn't start chemo until December 15, because a small lump was discovered under the affected skin and it pulled everyone's attention away from the skin signs. I can't help but think that if I hadn't plodded through the delayed mammogram, ultrasound, core needle biopsy, lumpectomy...maybe, if someone had realized the skin texture was there because it was chock-a-block with tumor emboli and rushed a skin punch biopsy and immediate treatment, I wouldn't have had such extensive axillary node involvement. But as you philosophically state, then was then, and now is now. So far, I'm NED, so I won't complain. Much.
My sister's IBC was diagnosed a few months afterward. She got her port and was doing chemo within a week. Lucky girl, eh? Geez, the things we celebrate.
Sending happy vibes your direction! Wish I was there to help with the dusting and hoovering. SB
0 -
Amarantha, so glad that you have a new appointment with your surgeon. This is a crucial meeting, and let's home an operation is possible. The denial of IBC as a diagnosis five years ago is pretty bad, but if the treatment was no different, perhaps this is not important. What was important, though, was the delay in starting appropriate treatment, both then and more recently. I hope there is some official inquiry into your case. I know, this is unlikely, but you really tried your best to inform them about the IBC. Meanwhile, sit in the sun and enjoy your garden. If you can, write us some more about whatever interests you. We love your posts.
0 -
Amarantha glad to hear that the appointment with your oncologist was encouraging. I hope things continue to improve for you over the next few weeks.
sbelizabeth I cannot believe that two members of your family have IBC given how rare it is, that certainly gives the idea that it is something in our genes/DNA, some weird genetic mutation we have, doesn't it? I'm sure it helped that you had experience with it. I made sure that my mother and my sisters were well aware of the early signs of IBC because I had never even heard of it until it happened to me, and it started out so innocuously as just what I thought was a sweat rash along the edge of my bra.
I'm very grateful that (most) doctors have become more aware of IBC and understand the need to start treatment immediately these days. If they didn't, I would most likely be dead already. I'm so sorry to hear of the experiences the two of you had a few years ago.
0 -
Hi sbelizabeth, LoriCA and Traveltext, thanks for the encouragement. Well it just keeps going on being too hot ! Breast keeps offering intermittent pain which I hope signals that the little cancer cells are screaming and dying (rather than the opposite !), I went swimming in my favourite lake yesterday and the day before, and admired from the bugs eye view, water striders humping; a dragonfly hovering over my head, gold and green with four golden wings, a flock of hot-air balloons of every colour spreading across the sky, the sun drowning in the lake water and turning it all the colours of mother of pearl, some Botero-esque women, a blue parasol with blue polka-dots, and a patient husband on a bench under a tree, on the shore, reading a murder mystery and waiting for me to finish my long long swim...
0 -
just diagnosed with invasive ductal carcinoma in left breast with axilla involvement, but haven’t received full pathology report yet. Doctor says it is 80% certain it is IBC. Have to go in for MRI guided biopsy of right breast since MRI showed irregularities and my symptoms started two weeks ago. Prior to that, no mass, no CB indication.
I live in southern Calif and am trying to decide where to get treatment. So far narrowed it down to UCSF or go to Texas to MDAnderson. So difficult to try to find best place for me. Did anyone else have trouble figuring it out? I am concerned re taking too much time to start treatment, but I guess I will know more once rest of pathology report comes back.
Also having some difficulty absorbing it all, it has happened so fast. Any advice gratefully received
0 -
Hi Susan0707. Sorry to hear that you've likely got IBC. Since several of us are from other countries, I'd recommend posting your question on this Facebook page here:
https://www.facebook.com/talkibc/?fref=nf
I have heard that MD Anderson is one of the best places in the US to be treated for IBC since they have a dedicated IBC center. You're right, treatment needs to start asap.
Do let us know the path results and where you decide to go for treatment.
0 -
Hi Susan, sorry about your DX. I'm in Orange County (enough of us here now from California with IBC that I'm starting to wonder if it's something in the water). Thankfully we have a wealth of first-class health care here in SoCal even if you decide not to travel to a dedicated IBC center. Since it sounds like you caught yours earlier I did, you probably have other treatments to take into consideration than I did (surgery, etc). There are pros and cons to both, but I've been very satisfied with my care here locally. As soon as they confirm your pathology they will most likely want to start chemo immediately. Nothing wrong with starting chemo here and going elsewhere for second opinion while you're deciding your next steps. Wishing you the best!
Lori
0 -
Hi, Susan, I'm in SoCal too--Ventura County. I agree with Lori. Get the bug-killer juice started so you can back the disease off. Don't delay. Then arrange to go see someone at MD Anderson for a consultation.
I got a 2nd opinion from an IBC expert at USC (he's currently at MD Anderson) and he and my local oncologist (UCLA) collaborated throughout my treatment. I think they're still phone colleagues, in fact. Please PM me if there's anything I can do to help. SB
0 -
Dear Susan, I'm so sorry you have been diagnosed with IBC. It sounds like you are good hands, and on the right track. I hope you will keep sharing with us on this thread. Wishing you the best of success for rapid and effective treatment.
0 -
Hello Loungers, I have been long gone off the boards, but I wanted to pop in and get up to date with you all. My apologies for being gone so long. I carry you around in my heart all the time, so I never feel far from you. I read thru the many pages to get caught up. Moreshoes, I am so sorry to learn of your mets. I just wanted you to know I am sending you my love. Amarantha, I feel lovely just reading your posts. I am sending you a special thank you for giving us graceful beauty. TT, I am so proud of you for attending the conference and advocating for us! How did you enjoy being in this hemisphere? TT in America! Val, my friend. Hoping you are well. You always inspire me! To all the new members I have not yet met, a big hello!
Tomorrow I celebrate my Big 5 Anniversary...5 years ago I was diagnosed with IBC. It was not in the plan. But John Lennon said,"Life is what happens while you are busy making other plans" That is true.. Last year I saw my oldest son get married. It was a beautiful day. I thought maybe I might not see that day back when I was diagnosed. I am very grateful for every day. I truly try not to sweat the small stuff. Almost everything is small stuff.These are things I have learned.
Thankful for this group, mindful of those who have passed from it. Sending you all my LOVE. Meadow
0 -
It's always nice to hear from you Meadow. Congrats on reaching your five-year mark. Woohoo, party time. 🎈I'd say put on that John Lennon track, for sure. Or Imagine, one of my faves. How nice was it to be there for your son's wedding. Have you taken any trips in that cute, retro vanover the summer?
I've been to your hemisphere before, but not to San Diego. The whole thing was a torrid learning experience with lots of science to absorb. The people there were fantastic, just like the people here. What is it about cancer people that makes them so nice. Must be the chemo. Not. No, I think it's just that they 'get it' with their cohort and want nothing but the best for each other.
0 -
TT, that is so true, we so want the best for each other. Yes, we took our little retro van camping in July. Here in the States that is a very hot month...and we had a heat wave, at least for Missouri. It was 100* degrees, so humid too! But we swam in the lake to stay cool, and it was very fun.
0 -
A friend took this picture of me, celebrating my Big 5!!
0 -
Congrats on your 5 years Meadow!
0 -
Congratulations congratulations on your 5 year anniversary Meadow, may you have many more.
0 -
Meadow, I am new to this thread, but felt compelled to tell you how wonderful that photo is with your 5 Year sign!! It gave me a big smile!!! Thank you for sharing and congratulations
0 -
Welcome to the Lounge FaithsMama. Meadow, you look great.
Lori, how's things with you? Amarantha, when do you start your new treatment? Are you hanging in there without too much pain?
Mara, nice to see you here. I know you are on some stage 4 threads. I now have two friends going through brain mets treatment and they are doing well. I trust you are too.
0 -
Meadow- Awesome pic!! You go girl-looking good!!!
0 -
Checking in since it's been quiet in here, and TT I'm sorry I just noticed your comment to me. Status quo here. Some of my lab work just had a big jump and is above range for the first time in a year. It's in some concerning areas given the locations of my mets (ALP, blood calcium, and WBC) but I still feel fine (relatively speaking haha!) so I'm not going to worry just yet unless they continue to climb. Hopefully it's just a one-off thing.
Amarantha how are you doing? We haven't heard from you in a few weeks and I hope that just means that you are living life.
How is everyone else doing?
0 -
Hi, Lori. It HAS been quiet around here; how is everyone? Amarantha you're in my thoughts frequently--every time I read one of your posts I'm smiling at the mental images you paint. Traveltext are you over your California jet lag? Meadow, you look fabulous--our poster person for IBC survive and thrive.
My hubs and I are working like maniacs to get our home ready to list after Labor Day. I'm retiring from my full-time job and will be a part-time consultant, and we are following our grandkids from California to Colorado. It's where we're originally from, so we're looking forward to escaping from Babylon and going home to the Promised Land (sorry, Lori...! You will never be a Babylonian in my opinion!). Most of our family is in Colorado, so it will really feel like home again.
On the BC front, both my sister and I are NED and doing well, although with some stiffness and aches from the aromatase inhibitors. It's the price we pay for an extra weapon, and I'm very willing to pay it. My next Prolia shot is in a couple of weeks--thankfully it doesn't make me feverish and achy like the Zometa did.
Enjoy what's left of summer, everyone! SB
0 -
HI folks, thanks for thinking of me; yes I've been hanging out trying not to melt in the heat, and just waiting for results and decision. I've seen my oncologist, a surgeon, a plastic surgeon, and had a TEP scan all this week. And no decision has been made on an operation. The surgeon wanted to do an enormous skin graft over the entire chest, not just a mastectomy on the right side, but also skin removal (plus muscle removal!) on the left side, but he didn't know if it would be possible so he sent me to the plastic surgeon. The plastic surgeon thought it would be difficult but we could take skin and muscle from the back. The surgeon suggested from the thigh. My oncologist apparently had told the surgeon after I saw him Monday that she didn't see any point in messing with the left side. My opinion is there is no way in hell I am going to let them cut off bits of muscle from my back in order to plaque a frankenstein style skin graft over my entire chest, and that they are seeing that as a good idea because they are surgeons. I am told they will will all be debating the issue on Monday and I will be contacted Monday night or Tuesday. The choices are to 1) do the huge skin graft, 2) just do a mastectomy and 3) do nothing. I know the oncologist is in agreement with me that the best idea is to do a simple mastectomy and handle the rest of the problem with chemotherapy. I certainly hope they do not choose to do nothing, and there is no way I am going in for the skin graft. Soooo ... stay tune for more news, this should be a nail biter ! meanwhile back to your regularly scheduled program ...
Oh whoops, I thought I just should add I went to see my best female buddy in the country and visited her aged mother on her antique farm and ancient house. We took a long walk and went by a ruined feudal castle in a field, and then came upon her husbands uncle's haunted abandoned house. We had the intention to go in and find the ghosts, but the weeds and thistles were so high - (head high) and dense we didn't dare. I asked her if she could drive a tractor, and she said she had once, so I proposed we go home and borrow her husbands tractor and come back and slash down all the weeds, then go in, chase away serpents, squirrels and rats, make a fire in the fireplace (I'm assuming there is a big antique fireplace) and have a pajama party while playing chess (not that I play chess) - she is so cute she was pretty much ready to do everything I proposed, (always been, we've been friends for 35 years) her children are now grown up and gone away, she is on vacation, it would be so fun ! This house really caught my imagination, it is a big beautiful old bourgeois house, abandoned with old wooden shutters, some open, and window panes broken, all surrounded by high stone walls, and huge tall trees. So romantic ! stay tune for news on the haunted house too ! Hugs to everyone !
0
