IBC lounge: roll call, support and just a good place to hang out
Comments
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Noor, It's not just IBC they can't yet cure, BC itself doesn't have a cure either.
However, this study finds IBC recurrence odds with: "aggressive surgical resection to negative margins in the frame of tri-modality therapy with curative intent can lead to LRR rates that mirror non-IBC rates".
Of course, with non-IBC recurrence rates running at 30%, we still have have to take our chances as people here who have progressed to Stage IV will attest. But, while there are go guarantees for any of us, this study is good news because we don't appear to be at a heightened recurrence risk if we had aggressive treatment. This has to be good news IMO.
Hormonal treatment for BC stages I-III in Australia (and I believe the US) is advised to be 10 years minimum. Perhaps you could ask why the situation differs in France. While ever tamoxifen is working for me (I'm 66 now) I'll keep taking it, since I've never had a side effect to date.
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Good to see you, Noor.
Letting you all know that I am having a Latissimis Flap on Wed. I had reconstruction surgery in December and the incision won't heal. My PS says it is a must do. This will put healthy skin and muscle on my chest wall. I am at peace with it. I am letting you know so you can hop in my pocket, and say a prayer for me. Thanks guys.
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Good luck with your surgery Meadow. I will be in your pocket for sure.
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Good luck on Wednesday Meadow, will be thinking of you.
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Hi everyone,
Thanks for posting the link to that article Traveltext. Reasons to be hopeful for the future treatment of IBC and proof that trimodality is the best way for it to be treated.
I am now the wearer of a lymphoedema arm sleeve. My case is mild with the swollen arm 15 to 20 per cent bigger. Going back to clinic on Thursday to check its working. I am feeling the benefits. Just a bit of a bummer on the fashion front!! But can't have everything I suppose.
Meadow, I am in your pocket already. Hope all goes well on Wednesday.
Have a good May Day everyone,
Love mini x
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Meadow, good luck. Please tell us how it goes.
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Mini, it took me a really long time to accept the fact that I had to wear a lymphoedema arm sleeve. I was refusing to have one for quite some time. I was feeling ashamed of it, it was a constant reminder etc. Until this happened: I was talking with a vague acquaintance for half an hour during lunch and at the end I noticed she was wearing a sleeve. I was so surprised. I, who were so consious about it and didn't notice it until we finished talking. At that moment I realized that people don't really pay attention / care.
As for the fashion part, as I said I've the oedema under control so I wear the sleeve at home, at yoga, while gardening etc. I don't wear it at work during the day. Travelling by plane requires wearing the sleeve. In the beginning I was trying to cover it, even in the summer. Now I just wear short sleeves T-shirts and don't really care.
Afrer all I've been through, the sleeve is the least of my problems.
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Traveltext,
Thanks so much for the article! Now I realize that my radiation treatment will be well worth it! When I was 1st diagnosed, I felt like it was a death sentence. I hope there will be more studies on IBC, and IBC awareness
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Hi Traveltext
Sorry for the late reply about the machine. It's the Flexitouch by Tactile company. (hope my spelling is correct). You suit up, for me it's left arm, shoulder, chest and trunk, it goes 68 minutes. It mimics massage that I get in therapy. My lymphedema center set me up. It's covered 80 % by my insurance and they work with you for the balance. I still go to my therapist once a month for monitoring and if i get swelling I get back on the schedule with her. If my leg gets involved they will fit me for the leg attachment. I had training by a therapist using the machine. My dh helps me suit up. (only way i can describe it)
For me, it's made a huge difference.
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Good luck tomorrow Meadow with your surgery and I wish you a quick recovery without compications.
I don't have lympheda, but I'm seeing a therapist once every two weeks to work on my scar-tissue and to monitor any changes. This is done with a machine called LPG endermologie (French invention). Really improved my scar, I have much more range of motion and apparently it is also very effective to drain lymph fluid.
Noo
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interesting product valstim. Here's a link for those interested:
https://www.tactilemedical.com/products/flexitouch...
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Yes TT it's very interesting. It is definitely helping my arm and wrist lymphedema. Can't really see a difference in my trunk. It does feel wonderful though. I still go for weekly therapy sessions. She measures, and shows a decrease since my using the machine. The end game is to end the physical therapy visits, and do the machine twice weekly.
You tube has a couple of videos how to use it, and what it does. My therapy location demonstrated it on me. Thats how I first heard of it.
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Hello everyone,
Thanks Moreshoes for the advice about arm sleeve and you were 100 % correct! Most people don't even notice that I am wearing it. The main thing is it's controlling the swelling. Was back at lymphoedema clinic during the week and don't have to see them again til August.
Had my 12th Kadcyla on Tuesday. Echo cardiogram still satisfactory so that's good news too.
It's exam time with the 2 older kids at university and youngest at home taking first year of A levels. Great to be here to support them.
Don't know if you can get BBC but there is a brilliant documentary called A Time To Live just out. It's about 12 people from age 23 to 69 facing terminal diagnosis. Well worth seeing if you can.
Wishing everyone well,
Mini x
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Meadow, how'd the flap op go?
Mini, Congrats on No 12, and how good is it seeing your kids powering on. Will look out for the doco.
Saw my onc last week and am now close to three years post bc surgery with the ultrasound showing all clear.
Hope everyone else is travelling well.
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Hi, newly diagnosed ibc. Scary times. All still so new. Also invasive ductal micropapiliary. No known node involvement. Secondary testing next wednesday. 7/8 and 8/8 for estr and progesterone but I don't yet know the significance of that.
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Welcome Abulafia. Do you know your HER2 status? Do you have a treatment plan? If you start to create a diagnosis profile in your signature section here it will help us understand your dsituation better.
The people here here have had nearly all variations of IBC so just post your questions and we'll help you through treatment.
Hang in there, it gets less confusing as time goes on.
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Oh, and The IBC Network Foundation has an excellent and informative app that you might like to download.
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Welcome Abulafia!
TT, so far so good with the flap...I am being super careful not to strain my muscles, my skin on my chest. I had problems with the skin not healing/popping open before the flap, I just do not want problems. I tend to overdo, I work hard outside! I like my yardwork, my horses, etc. and now I just sit and wish I was up and doing. But my husband has been so supportive, he lets me do what I can and doesn't expect anything except for me to heal. So I am trying to be good, to not overdo. Thanks so much for checking on me.
Summer is here, hoping you all are able to enjoy!
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Good news Meadow. Just keep sitting and not doing for a bit longer. Healing is your priority and then you'll be very useful around the place again, for sure!!
Winter is here, but it's a sort of fake winter at the moment, not cold at all.
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Hello to all
Meadow glad you are healing well and will take it easy. Sending gentle hugs. I love what you said TT, fake winter. Thats how I feel about the North Carolina winters compared to Lake Michigan winters.
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Valstim, how's your health?
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TT so far so good. My breast surgeon and Mo both say I'm doing well. Other than my knee pain and some balance issues from my stroke, so far so good. Still NED on the cancer front.
I am slowly regaining my strength. I'm learning to deal with the new normal. The slower, sicker me. Grateful to be here, but miss my 'old' self. If that makes sense.
Thanks so much for asking.
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Hi TT and everyone here.
TT. Her negative. Chemo should start this week. Date tbc today. I think the combo of micropapiliary and ibc has had the team arguing about procedure.
I have two areas also on my left breast but the biopsy last Monday missed and came back with normal tissue, so they will do an MRI guided biopsy this week before chemo.
Hi Meadow. x
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Abulafia, it's good that you are ER+/PR+, HER2-, since that's the easiest to treat. You are my stage and grade as well. Someone here may have experienced micropapiliary and ibc, and could report in. Good luck with the left breast biopsy. Hopefully there's nothing to worry about.
Do you know the chemo types? I did 3 X FEC and 3X Taxol.
Great to have you with us. Keep us posted and any questions are most welcome.
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Mini, I finally got around to tracking down A Time To Live. A trailer of the series is available here: http://www.bbc.com/news/av/magazine-39950924/dying...
Looks like an excellent doco. Can't see that the whole thing is available outside the UK, but thanks for alerting us.
How's the LE?
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Mara, how is your treatment progressing?
Noo, is the scar-healing machine still doing its job?
Meadow, how's the recon recovery?
Any others with updates?
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TT, treatment still working. I was scanned in May and am NED. Nothing from the head down. If my July/Aug scans are the same, will move to CT scans every six months. Feel better than I have for 2 years
Thanks for asking. The drugs don't have too many side effects which is nice.
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Hi Traveltext,
Thanks so much for tracking down the trailer for A Time to Live. I really got a lot of comfort and inspiration from watching it. As Lisa says it's time to do things and not just talk about it.
My lymphoedema is responding well to the arm sleeve. The nurses at clinic are very pleased and I don't need to go back til August.
Had more Kadcyla, number 13, this week. Ulcerated skin mets remain static. Good news.
Off on a sun holiday next week... Had to cancel last year so really looking forward to it.
Enjoy the long weekend for the Queens birthday in Oz.
Hello to everyone. Just keep taking little steps.
Mini x
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mara and mini, I love reading your posts that you are both feeling better! This is good news, returning to the joys of living.
TT, thanks for checking on me. Although I was probably one of the most reluctant Lat Flap patients ever, I can honestly say, so far it is a big success!. At 5 weeks post op I feel really so much better! Strength is returning, and although I do notice diminished overall strength on that side due to the rearrangement of muscle, it was a success. (So far...hesitant optimism!) Good things abound. Sending love and hugs all around the world, to my IBC family.
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hi there IBC sisters I haven't been here for a long time. Thanks purple minion for this forum. Well I just recently passed my 4 year cancerversary! Wow not bad for a lady who was supposed to be dead before 6 months from dx. Over 60 cycles of H&P every 3 wks and doing great with it. It's been a long and crazy ride.
Peace
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