IBC lounge: roll call, support and just a good place to hang out

Meadow

Some of you may remember, I have been battling a severe infection in one my implants, and had it removed in January. I had attempted a revision surgery to my reconstruction to repair some damage to my implant from radiation. It was a failure, the area became severely infected and I have been seeing an Infectious Disease Specialist. On Friday I got the all clear for surgery and had it today, Tuesday. My PS was able to close my open wound that I have been packing since February, and smooth out some rough puckering from too much skin when the implant was removed. Hoping for good results. I have been a bit down the past few days, not really familiar territory for me. I am going to stay flat on that side, and I am ok with it. Hoping for the end of this season of infection, on with Spring. Hugs to you all.

Traveltext

That's good news Meadow. I hope the surgery heals well and that you will now not have to worry about infections any more.

From what I read your situation is pretty common. I understand there's no real comparison, but when people ask me if I'm upset men aren't offered recon. surgery, I say definitely not.

Meadow

Thank you TT, and I did think of you when getting comfy with no recon.I thought, 'TT has no recon, he doesn't seem to mind!' Lol

Traveltext

Comfy? Hell yes, and proud. The first thing bc guys do when meeting is to lift shirts and compare scars!

mara51506

Glad to hear that you are not bothered by going flat Meadow after all that awful trouble you had. There are good prosthetics, knitted knockers if you need to fill out clothes. I go flat all the time. Had my right breast removed myself couple of years ago so I too am a uniboober. No one gives me a second look and I don't even bother with loose clothes. Only thing my BS left me with was some extra skin since I originally was supposed to have recon. That did not happen since I did not fully get out of treatment AND went Stage IV. After all the stories I have heard here, I am not interested in undertaking recon.

MoreShoes

Oh Meadow, you've been going through a lot. Hopefully the operation went well, you're happy with the results and NO infections. I've DMX but go flat only in the house. Emotionally, I still have major problem with it. There's no chance on recon in my case.

minimoocher

To all in the Lounge, wishing you all the best for Easter 2017.

Traveltext

Thanks Mini. Best wishes to all in the Lounge.

jcpriest0469n

Hello to all and Happy Easter. I finally came down with a bad cold. It chased me all winter. Glad it's finally over.

Cravingicecream

Diagnosed in January,just got to the boards.It is nice to discover this group！

Moderators

Welcome Cravingicecream,

We're glad to see you found us.

Sending you big hugs from us here

The Mods.

Meadow

Craving, welcome! We are so glad to have you join us. Thanks for the pep talks, Mara, TT, Moreshoes.

Hugs to all and thanks for the Easter blessings and good wishes, same to you

Traveltext

Welcome Craving. You find lots of support and help here as you go through your treatments. Do keep our profile up to date and we'll know where you're up to at any time.

Meadow, I can see you're over three years post surgery and cruising towards four years post diagnosis. Good on you. I know you're active on the TN boards, but it's great to have you check in here too.

Meadow

Thanks TT, and thanks for noticing my survivorship...I am very very happy about those big years under my belt. My IBC peeps are my family!

Yogibeach

Hello I'm a newbie, just diagnosed with IBC March 15, 2017, started Taxol on March 28, 2 doses so far plus Neupogen, the WBC booster, not sure of the spelling. Glad to have found this, I do feel isolated, having IBC. I'm a bit worried about lymphedema as I have axililary lymph node involvement and I want to try to prevent it so am looking for ideas about prevention, exercise etc... Also does anyone swim in public pools while having chemo?

Cheers to all.

Traveltext

Welcome Yogibeach, you've clicked the right button to land here, so feel isolated no more. In your profile you can record your diagnosis and treatments and this helps us keep track of where you're at.

Most of us here, if not all, have had our lymph nodes removed, so we understand your concerns about lymphedema when surgery is over. I haven't had it. No harm in planning ahead and there's a huge set of threads HERE if you want to research more. Certainly exercise is recommended, but mainly you need to keep your arm free of infections. Speaking of which, I'd stay right out of public pools since you need to ensure you don't get an infection during chemo or you'll get a free trip to hospital where they treat you intravenously with antibiotics. I had one of these trips after a dental appointment landed me with an infection.Also avoid people with viruses, since it really is important to stay healthy during chemo. The drug side effects are enough without handing extra health issues.

Anyway, good luck with the chemo and keep us posted.

Yogibeach

Thanks, yes, I figured out the diagnosis settings after I posted. Glad to be here.

Liz06

Hi just checking in! Diagnosed IBC in June of 2015 - right around my 38th Birthday. Did the chemo-surgery-radiation trio and now I'm continuing with Aromasin and Herceptin/Perjeta infusions. I haven't been on these boards much but it is nice to hear from others going through this.

Traveltext

Welcome to the Lounge, Liz. We have some Stage IV people here and your treatment experiences will be interesting reading for them as well as the rest of us.

jcpriest0469n

Welcome to cravingicecfeam and yogabeach, This is a great place to connect with others going though the same. Hope to here more from Liz. Have a good day.

MoreShoes

Welcome to cravingicecream and yogibeach. Sorry you're here. Yogibeach, I do have lymphedema for 9 years now. It is under control. The excercises are very important. Self lymph drainage massage is also helpful.

mara51506

Welcome Liz, my treatment is Herceptin/Perjeta as well. Glad to meet you.

minimoocher

Hi everyone and welcome to all the newbies. This is a great resource for us IBC people.

Had a CT scan before Easter and got results today. Vital organs all clear. A few enlarged lymph which are on a wait and watch. My skin wound which is a fungated tumour essentially is responding to the Kadcyla. I am having cycle 11 today. So static or stable for the moment. What a relief!

Keep posting everyone. We are all so individual and treatments these days are tailored to fit each case. I perplexed my oncologist when my recurrence was in the skin so soon after mastectomy.

Going to my first lymphoedema clinic appointment tomorrow to see what can be done to decrease arm swelling. Again, my case is challenging as underarm rash, involvement means that a sleeve would be tricky but I'll see what they recommend.

Best wishes,

Mini

Valstim52

Hello to all the newbies. This is a great source of encouragement and knowledge.

Hi Minimoocher. Glad the organs are clear. Sending gentle hugs your way. Hi to traveltext, meadow and any i've missed. I too go for lymphedema therapy. Less now that my insurance covered a machine that does the massaging. It makes a big difference. It covers my torso, stomach and left arm. Then gently massages for 68 minutes. My swelling is non existent.

I only have a few mild se's from my stroke last august. Trying to get this dx in my rearview mirror.

jcpriest0469n

• That's great news valstim. Don't have lymphedema,but my neuropathy in feet is back. It's been fine for 6 months or so. Very bazaar.Glad your sounding so good.

Traveltext

Mini, glad to hear you are static and stable. The skin recurrence was a real curve ball on top of all your other treatment. I hope the lymphedema clinic can offer you help and be sure to learn the proper massage techniques. MoreShoes is the expert on this - in fact, nine years of lymphedema would make her a world expert!

Valstim, what's this machine that does the massaging? Never heard of such a contraption. Can you post a link to the one you have? Glad your stroke se's have settled. jcpriest, neuropathy can come and go. Let's hope you have it going more than coming, since it is a dreadful condition. Cheers to all the other Loungers here.

Meadow

Mini, very good news! Update when you can about the LE

Val, that machine sounds wonderful. and it is really effective too...wow!

Yes, as TT says, hello to all the Loungers

Traveltext

From the American Society of Breast Surgeons.

Contemporary Inflammatory Breast Cancer Therapy Yields Low Local/Regional Recurrence:

https://www.breastsurgeons.org/docs2017/press/Inflammatory%20Breast%20Cancer%20-%20ASBrS%202017.pdf

MoreShoes

TT thank you very much for posting this link. I was feeling really low cause last year around this time I was preparing myself for DMX and one month of cruel hyperthermia rads. The article makes me feel that there's hope and I didn't do all these treatments for nothing.

Noor46

Hi everybody and specialy all the new Loungers.

TT: I read the article just yesterday in the waitingroom for my appointment with my Onc. This gives a lot of hope for everybody with Stage III IBC. Although they are not (yet) able to cure IBC, treatment results improve.

All exams clear - NED! In november I will stop Tamoxifen and start an Al, makes me a little nervous, what SE will that give me? I'll try and see.

Here in my french specialized cancer hospital hormonal therapy is only given for 5 years. I wonder if in the US / Australie or elsewhere patients with stage III IBC get longer hormonal therapy than 5 years?

Enjoy your weekend,

Noor