IBC lounge: roll call, support and just a good place to hang out
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I hear you, sister. The train ride from Simi Valley to San Diego was about the same amount of time as driving with light traffic, but it was fun and relaxing to read, nap, or just look out the window. There's a fun stop at San Juan Capistrano to see the mission and have lunch.
I used to see a UCLA-affiliated oncologist in Thousand Oaks, and I think the world of her. She was the first to suspect I had tumor emboli in the skin of the breast and insisted on a biopsy of it to see what she was dealing with. She's not necessarily an IBC expert, but very sharp. PM me if you would happen to want a consult with her.
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Thank you but it looks like Thousand Oaks would be a haul for me, that's 100 miles and 4-5 hours by train according to the schedules I'm looking at!! I don't have the energy for that. I might look into UCI since that would be more realistic for me. I just wish that UCI's cancer center was actually in Irvine, not a few cities north of there. I drive to Irvine on a regular basis, but anything north of there gets my blood boiling anymore, especially if I need to be somewhere by a certain time.
City of Hope is also building two new cancer centers in Orange County, the first will be in Newport Beach opening later this year, then a main campus in Irvine. So within a few months I'll have two new major cancer centers a reasonable driving distance away. Cancer is a booming business in OC right now. Maybe everyone is tired of trying to drive to LA.
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Just posting a howdy as I figure out the forum. I was in this a long time ago but been awhile.
Hope always,
Terry Arnold
DX TN IBC and BRCA 1 summer of 2007. I am NED
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Welcome Terry. Please read the last five pages of this thread to see the IBC nightmare scenarios that several people here are experiencing.
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Hi Terry, are you the IBC Network Foundation Terry Arnold by chance? I am also TN IBC and NED since July 2017.
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Amarantha I'm worried about you. If you get a chance, please let us know that you are okay. Sending you love and hugs and healing thoughts.
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Amarantha, whatever you're going through, we are sending hope and encouragement.
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I know amarantha will report in when she can. Her last post was about pleural effusion, three weeks ago, so it's very likely that she's not well enough to post. I, too, certainly hope to hear from her soon.
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Amarantha--May the good Lord gives you comfort and easy breathing,no more fluid accumulation in your lungs.
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hi, I sporadically write but am always reading this board. I have redness spreading across my chest slowly. I still have tissue expanders in for years now, too long to explain why. Anyways, now I have skin erosion on one of the expanders. They sucked all he liquid out because the skin is so thin due to the cancer. Any one have this or heard of it?
Thanks .
D
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Hi DancingDiva, sorry it's been slow around here lately. I don't have any experience with what you are going through and was hoping someone else who's done reconstruction might chime in. I have read several posts from women who developed skin mets along their mastectomy scar lines but sounds like you are experiencing something different. Skin erosion? Is that actual open sores or a thinning of the skin? Sounds like you've been having a really tough time with those skin expanders (over four years???) and I just wanted to say that I'm sorry for everything you're going through.
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yup 4 yrs of these hard expanders in. The cancer spread to my skin looking like inflammatory bc and into the nodes. Radiation seemed to clear things. Then a biopsy with a knife not needle, soon afterward near my breast started the redness again. So I didn't want to cut again to really get the cancer going. Seemed to be stable but the redness is now growing and the skin is very thin. The expander is at a wierd angle, it's completely deflated and a corneris starting to prob go through my skin. The whole thing sounds gross.
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I had a similar experience with radiation DancingDiva - rads seemed to work, everything looked like it was cleared up, and then a few weeks later it started up again. IBC and skin mets can be so d*mn stubborn. I don't blame you for not wanting to cut into the skin, but what a nightmare that you've been stuck with those expanders because of it!! I know it's not the ideal option but have you discussed with your oncologist doing chemo to try to knock it down enough for surgery? I know you'd rather not cut into your skin at all, but if that corner pokes through they are probably going to have to cut anyway. And I can tell you from experience that if it ulcerates because the cancer breaks through the skin, it will be no fun at all. You want to prevent that from happening at all costs, trust me.
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Long time since I posted so many may not remember/know me - Aug will be 10 yrs since my IBC DX. Still 'here' living everyday to the utmost I can and loving it.
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I certainly remember you Kicks. Nice to have you back on the thread. So good to heat that you are coming up for 10 years and NED.
Things are a bit subdued around here lately since we haven't heard from the very ill amarantha for six weeks.
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Hi Kicks. congrats on your ten years!
I keep checking on Amarantha - she logged in here on June 10th and 22nd, but didn't post anything either time.
Follow-up with my RO next week, will see what she has to say. Based on our last phone conversation after my scans, I think she has a different opinion than my MO on changing my treatment. I'll probably end up confused and frustrated again, but mostly I want her to tell me if the way my skin looks is normal after 2.5 months of rads or if it looks like skin mets are acting up again. Tumor pain is still staying around 3/10, a bit worse after wearing a bra all day because the band under my arm presses on it. B complex isn't helping numbness in that hand even after doubling the dose. But all in all, everything is manageable, mainly battling some brutal fatigue. I wake up with that headache-behind-the-eyes feeling and spend most of the day trying to convince myself to power through it, sometimes I want to cry because it's so crushing and I hate that feeling. I'm getting a good night's sleep every night, but the women in my support group think it's my body saying it needs more rest to heal and suggested that I try taking a short nap every day to see if it helps. I feel so lazy, I want to be stronger than this. But all in all I'm doing okay, I'm at that cranky level, but not miserable.
Hope everyone is enjoying their summer (winter for you TT).
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Well, Lori, you are going through a lot. It’s great that you’re sleeping well, but fatigue and headaches are a real bummer and I’d be cranky too. I’m glad you have your support group to bounce things off.
While amarantha is showing a check in on 24 June, until she writes something I’ll continue to worry.
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Oh Kicks! I've been so worried about you! And so glad to read that you're doing well. Thanks for posting and letting us know your ten-year celebration is just around the corner.
Lori, I'm so sorry you're in such pain. Danged cancer. And a constant headache just interrupts everything--you can't get away from it. Try the nap approach; maybe your friends are correct that your body just needs it.
I had an epidural steroid injection today, to try to relieve the constant lumbar back pain and the gnawing pain and heaviness in my legs. I've had back pain for years and have learned to manage it with core-strengthening exercise, but the symptoms in my legs had me worried that I had a space-occupying tumor in my spine. An MRI just showed worsening spinal stenosis--Yay--and I'm trying to stay out of the operating room, so hopefully the epidural steroids will work.
I think of our Amarantha every day.
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I hope the steroids give you relief SB, I know that lower back pain is the absolute worst, most debilitating pain. I'm glad your MRI didn't show cancer, but I know that isn't much help.
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Hello friends,i have not posted for a while and it was a happy surprise to see you Kicks posting again,i am so happy you are doing well!
I also wonder about Meadow, she has not been on for ages,i am coming into my 7th year NED and enjoying my good fortune,i wish everyone well!
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Hi everyone, thank you for thinking of me. I have been in the hopsital since May 2. Today I am am enjoying a one day home visit with permission. After the exam of the pleural effusion it was found the meninges were affected. So I am receiving Decadron, and have been hospitalised continuously since then. Very weak and cannot climb stairs so expensive house revisions are happening before I can come home for good. I am grateful for the visits I have had and am trying to stay positive.... love to all.
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Well, we were very worried about you Amarantha. So pleased that you can go home after two months in hospital. You must be so relieved.
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SBE, ouch to that needle. Back pain is such a bummer, so I hope you get relief from it.
Jessozzie, welcome back and congrats on your seven-year NED.
On a sad note, my stage 4 male bc pal Rob died last week. Rob was on this thread last year, some of you may remember. He was a great guy and a diligent patient advocate for men with our disease in Australia.
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Amarantha, so good to see you! We have missed you. I hope the brief visit home was lovely.
TT, I'm so sorry for the loss of your friend Rob. I do remember him, and his fighting spirit to advocate for men with BC.
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Amarantha it's good to hear from you. I'm sorry you are going through such a rough time, but I am happy to hear that you will be able to return home after spending two months in the hospital. Is the Decadron helping?
I'm so sorry about your friend TT.
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TT, I'm so sorry about your friend. I remember him. We can't escape from this disease.
Amarantha, how soon can you have the adjustments in the house? Wishing you the best.
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Amaranth: thanks for taking the time and energy to let us know your status!! (((air hugs))), you are such an inspiration! Hope you have a great home visit.
LoriCA: I will suggest that you try liquid form of B complex if you didn’t feel improvement after taking double dose. I am assuming you are taking them in pill form. My digestive system and kidneys were not good to start with, the chemo definitely added insults to injury, those mega dose B complex was hard on my kidneys, so I found sipping b complex drink thru out the day helped me the most and it certainly tasted way better.
TT: so sorry for your loss!
I think I am still dealing with a little PTSD, so I don’t write often. But, you brave ladies are in my thoughts often. Sending healing prayers to you all...0 -
megadose B complex ? I am not sure how that got into the conversation, just lots of decadron and side dishes which tasts like peotroleum jelly and cherries but could be worse !
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The B complex is mine - to try to regenerate the damaged nerves in my right hand. I don't think it matters if I take pills or liquid, I think that as long as the tumor is pressing on the brachial nerves I'm going to have this numbness. I'm grateful it's just numbness since last time I lost complete use of that arm for a while.
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Amarantha, are you sleeping OK? Seems like steroids induce "monkey brain" syndrome in many of us, where it's impossible to wind down and relax.
Lori, just NOT FAIR. I'm sorry. Numbness is better than loss of function, but still, it sucks.
Leslie, good to see you. A couple of years ago I had an appointment in the same office complex as my radiation treatments, and I could barely make myself walk in the door. A flood of memories almost immobilized me.
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