IBC lounge: roll call, support and just a good place to hang out
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Hi Mara, LW & Selizabeth,
Omg Mara, leg thru ceiling!!!!! What the heck!
If you hear construction noise be extra careful.
LW, don’t worry you are doing great! They told me not to “baby” my affected arm so use it normally, swing it freely when walking. My arm is under control by wearing custom sleeve & nighttime sleeve for a week. I ordered a beautiful lavender butterfly sleeve from lymphediva via Brightlife Direct. Makes me happy & very soft!!
Selizabeth, thanks for sharing your travel story it helped ease my mind.
Happy spring everyone!0 -
We're just letting you know that we are offering a new group TODAY at 3pm, ET (Bonded by the breast cancer experience) in case you are interested. It's primarily for those finished with active treatment, but who may be on longer term hormonal or other treatment, and could use the support
If you are interested, please register here in advance for this meeting:https://breastcancer-org.zoom.us/meeting/register/tZIuduGspz0rG93Jrg16Zi1NQrja-insoVJm 0 -
How are IBCers going? Any news to share? The community pages still have glitches but it is possible to post here.
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Hi TT, I am still stable and strong here. I am happy to hear from you, hope others will check in soon as well. This thread deserves more love and there are many I hope to hear from as well. I do hope things are going well for you as well.
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All fine here in Colorado, where spring is here but the snow isn't finished with us yet. This month marks ten years post DIEP reconstruction for me--quite a milestone! I belong to a listserv that keeps me up to date on BC research and developments and it's great to know there are new drugs and protocols for the recently diagnosed. The big upcoming dilemma for me is this July, when I'll have taken letrozole for ten years. Do I beg my oncologist to let me stay on it indefinitely? Celebrate the end and hope for the best? I have the sense that the aromatase inhibitor is just keeping the monster chained up and asleep, and if I discontinue taking it, the beast will wake up and attack me again.
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mara, Love it that you are "stable and strong". Those two words are very descriptive, but so meaningful and positive. And coming up to your sixth anniversary for Stage IV diagnosis is such a fine achievement.
SBE, Ten years post Diep, that deserves a party! Your comment on ten years of letrozole, that it's "keeping the monster chained up and asleep", resinated with me. That's just how I feel after eight years on tamoxifen. I sort of want to stop it, but the security blanket feel to it suits my temperament. I doubt you'll have to beg your MO to continue with it.
I'm still on the NED waggon for my two cancers, thank goodness. Most of my spare time is taken up as a patient advocate on bc social media where there's so much happening. I record and publicise all the latest news on the male version of our disease. I'm on Twitter as @malefitness. I'm now the president of the Male Breast Cancer Global Alliance. It's Fall here. As you head to summer, we head into winter. Although compared to Colorado, our subtropical winter is a fake one!0 -
Thank you TT, I am glad you are bringing more awareness to the fact that men can get breast cancer as well. Need to have more attention and funds for that too. Yes, it has been a long time for me and I do enjoy being NED in both body and brain currently which is good. Just have routine scans, MRI every 3 months for the brain and CT every 6 months. Only see a doctor about every 3 months as well since I am doing so well. I am so glad to hear you are NED for both cancers you dealt with too.
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Thankful to hear from you Mara, sElizabeth & TT. Glad everyone is alright. I think it’s good news LW is absent, I think it means she is doing great! I feel the same, don’t like taking pills & annoying SEs, but while on Xeloda, I feel protected at least. I’ll be happy when I’m done, but at the same time scared. I am half done with xeloda. Hospital sent me to collections for $40 ugh. I’m enjoying catching up with friends & slowly coming out of my hole. Take care please check in soon. Cheers.
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Hi everyone! Hope you are all well and doing fine. I'm like most of you... frustrated by the website and wishing they'd finally get this place back up and running smoothly. I feel for newbies who come here needing help and support.
I'm doing OK. The transition out of "treatment mindset" has been easier than I expected, but I still get freaked by random aches and pains. I suppose that will be life from this point forward. Take care!
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mamacure, good to hear from you. I’ve heard so many good reports on Xeloda and very happy that you’re managing with it. Keep emerging from that hole and keep in touch. 😀
LW, yes, hate it that the BCO forum is not working properly. However, keep posting here. Good luck with the new normal mindset. Re aches and pains, my MO always said, only worry if your pains are persistent and progressive. Saves worry about everything. 😲
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Hey TravelText. I check the forum most days, though it does get a bit frustrating. I feel for the moderators who are trying their best to keep things limping along. It's a shame that the IT support for this website is so poor, though.
Thanks for the pep talk. I feel like a veteran of cancer wars... all banged up but limping along and glad to be off the battlefield (hopefully for a LONG, LONG time!) Take care.
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LW, I feel the same about waiting for the page loading, this happens on any browser I am using but I do find the site more functional as it does not take me to a this site cannot work. I know that is not the correct wording but you would know.
I am still doing well physically as well. I often forget about treatments too since most often they are the same, only see MO about every 3 months as nothing is usually found from the neck down. Talk to RO about the MRI for the brain. Not much going on there which is always a good thing.
The biggest thing that happened is my weekday call for a wellness check ended. We had become friends and talked for two years. She wanted the friendship and I jumped at the chance. Over this last year, she became mocking of the little things I do and it became apparent we really had nothing in common. After a few particularly hurtful comments, I messaged her telling how she hurt my feelings and did not feel it was right. She said she would have me taken off her list and wished me luck.
I am healthy so to replace that call, I text my SIL between 8 and 9 pm daily saying all is well. They don't need to text me back and this works better. If another person is put on wellness check, I will not allow a friendship, just the quick call. I have people here to talk to and I have a couple of really good friends who I mostly talk to on messenger though one of them I occasionally go out with as well. I even had free head scarves sent for no reason through one of the ladies I talk to from a facebook group. I think I will not miss the other lady after a while.
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Hi Mara,
That made me sad to hear of that wellness lady. You deserve better. How rude. Don't even think about her again! We all love you here and only wish you the best. My insurance has been doing wellness checks on me which I find strange. my disability insurance is helping me to apply for social security disability benefits. But I do hope I can work again in the future.
LW, glad you are doing well, I know what you mean by every ache & pain (& zingers)TT's advice on prolonged/ persistent is helpful (but still scary).
Take care everyone, thinking of you all!
Also anyone take the covid antibody “Evushed”? My hospital approved it for chemo patients including Xeloda takers.
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I'm glad to hear everyone is doing well! I have not been on this site as much lately. Partly because of the technical glitches, and partly because it is easier to move on if I spend less time thinking about the lurking monster. I'm really trying to focus on my health and keeping my stress level low. I still have fatigue that is unpredictable, and have been unable to return to work full time, but I feel like I see slow improvement.
It seems like no new members to this group? I would love to think that is a good thing! But, I fear with the website glitches with the website are likely to keep people away....
Glad to hear from everyone!oh yeah... and I still have insomnia that hits...it is 3:58 am for me as I post this
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Blue22, Good to hear from you. Everyone here understands moving on and focussing on your health, not to mention keeping stress levels low and dealing with fatigue. BC certainly is the gift that keeps on giving. And, 3:58am is the time I wake up. For me it’s a good time to deal with my social media. Anyway, all the best from the other side of the world. 😀
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Mara--sorry about the wellness check lady.
Mamacure--I'm not familiar with Evushed; are you getting it? Hope the xeloda is going OK.
Hey Blue! I'm glad you checked in and are doing pretty well. I find I get tired more easily these days so I suppose our bodies are still in recovery mode from all the recent trauma. It's good to hear from you and everyone, though I understand about wanting to distance ourselves from the nightmare. I wanted to stick around here to respond to newbies because I remember how much I needed this place when I was diagnosed. Unfortunately, coming here keeps my anxiety high... I read things that throw me right back into panic mode. Take care and check in when you can.
I've also been having a LOT of joint pains, especially in my hip. I never had this stuff before and am wondering if it's a "gift" from chemo or other treatment. I'll discuss with my MO next month.
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Blue, I am glad that you are able to focus on your health. I can sort of understand the fear factor because although I am Stage IV, I have been NED from the neck down and no changes in my brain, scans can sort of make me nervous. I just go with how I feel and if it is normal or minor, I no longer blame cancer as a go to. Given that you have finished your treatment, it will all come back to you I am sure. If all else fails for the stress 4-7-8 breathing can help. Inhale to a count of four, hold breath to a count of 7 and exhale from the mouth to a count of 8. Automatically relaxes the body. The numbers can also be adjusted if it is too long ie Inhale to a count of 2 hold breath for a count of 4 and exhale to a count of 5.
LW, I am not sorry about my former friend. We were never supposed to become friends as per her volunteer job. She was just supposed to ask how I am feeling, I say how I feel and she hangs up, no answer, contact emergency contacts. When she asked if she could talk to me outside this relationship, I should have kept the barrier up. If someone replaces her, I will not make that mistake again. For now I just text my sister in law with "all is well", she knows not to respond to this. I do it between 8 and 9 pm.
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Lori reported good news on Twitter, April 13:
Onc is impressed that I've been on Enhertu for 18 mos. Even more impressive since I've been resistant to everything else tried over 3 years.0 -
Hi friends hope you all are doing well. Came after a long time here. Trying to keep myself busy not to think about the unthinkable . Life is not the same it used to be
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Flo, Good to hear from you. True, nothing is everthe same after cancer.
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Dear Traveltext, wow, so great to hear about LoriCA! Whenever you "meet" her on twitter/somewhere-else, please pass over my best wishes to her. Uh, these news just made my day!:)
Saulius
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I’m here saying Hi & glad to see you
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Just stopping my to say hi and post a quick update. I finished my last AC/pembroa couple weeks ago and overall I tolerated it pretty well. I was expecting a heck of a lot worse from the stories I've read so I'm very thankful that all I experienced was some nausea and fatigue for a few days after each infusion. I feel really good physically but nervous about surgery coming up. I'm scheduled for a left modified radial mastectomy with alnd on 5/17. Not so nervous about the surgery/recovery itself, more so about the pathology report. I feel like I handled the chemo almost too well although I assume that doesn't directly correlate with how effective it's been.
Hope everyone is doing well. Best wishes to all
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Thanks for keeping us up to date preciousbecky. Just nausea was good news for the chemo. The surgery is pretty dramatic, and you'll wake up with drains to get rid of the excess fluids. Follow the instructions scrupulously, so you don't end up with a seroma, like I did! After surgery you'll get a pathology report that shows tumor size, etc, but also whether you achieved a complete pathological response (look for pCR on the report) to the chemo. I didn't, which worried my team at the time, but they explained that radiology would clean up the residual cancer. They were right. This was all eight years ago and I'm still NED. Go for it!!
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Traveltext - Thanks so much for your response. I’m definitely ready to get the surgery done and over with! I have a pre-op PT eval next week but wondering if I’ll see them again post-op, for lymphedema prevention/surveillance mostly. Did you by chance have therapy after surgery or do you know if that is standard, or is it only if issues pop up?
Thanks,
Becky0 -
Becky, Is your pre-op eval for planning general recovery for specifically for lymphedema? I remember the first time I had a PT eval was after surgery when I woke up with all lymph nodes removed. The PT showed me manual drainage techniques and, most importantly, took benchmark measurements of the arm for comparison should anything develop. I have never developed lymphedema but I'm scrupulous about looking after the arm when there are insect bites or gardening scratches.
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Thanks traveltext. I remembered my SO saying she was ordering PT for “prehab”. I actually just pulled up the note in MyChart from my last visit with her and she says “PT prior to surgery for baseline measurements, and follow up afterwards for range of motion and swelling” so I guess that answers my question!
I have pre-op CT/MRI this Tuesday and it’s all I can think about. I find myself panicking about every new pain or twinge in my body lately. I’ve always been a worrier/overthinker/type A personality, and I’m just having a really hard time not being in control and not knowing what’s going on inside my body. The mental toll of this so far is so much harder for me than the physical. Trying to keep my chin up but none of this is fair
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Precious Becky, what you are going through being nervous about every ache or pain is completely understand. My MO said to me much earlier on that if the pain or twinges last more than two weeks, that is the time to worry more. You are still going to be followed for a good while even after all the surgery by many doctors and you have good advice here.
Though I am stage IV, I have been NED from the neck down since 2015 which means my treatments and surgery all worked. Only unusual thing for me was having the mastectomy first then chemo and rads which does not follow IBC treatment protocol and to this day have only been told they wanted the breast gone first. Point being, still NED from the neck down, brain is behaving and you have every reason to put the two week timer before worrying about pains and aches. That should help in keeping them in the normal range of things. If really scared, follow up with MO. The two week thing helped me along and separated my regular aches and pains from possible cancer which actually never really caused pain. My arthritis and walking too much were the only pains I actually dealt with.
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Hello everyone; hope all are doing well.
Becky--we all totally understand the the emotional toll of this diagnosis. I know you are struggling but you sound like a strong young woman, and I am hoping and praying that you will get through this treatment and live a long and happy life watching those little ones grow up. Just know that we "get it."
So happy that you had a relatively easy time with chemo; many people do so don't worry about the effectiveness. I wish you the very best outcome and easy recovery from surgery. It's another "tough but doable" thing we have to endure. I'm glad you're getting the measurements of your arms, etc. so the PT will have a baseline of your normal. Take care and keep us updated; we are all pulling for you!
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Good luck Becky on your surgery, I felt it was tolerable & moved along fairly fast with healing.
Hi everyone,
I so needed to hear TT saying radiation took care of it (I also did not achieve PCR), thank you. I just had my 6 month follow up with my surgeon. She felt my lymph nodes & remaining breast & said all looked good. I told her if my lymphedema gets worse, I’ll get LVA surgery. So far manageable but nighttime sleeve is not fun. She said some modes will reconnect on their own & I might feel better. That’s hopeful. I got 1 yr mammogram on my “good” boob. Hope everything will be fine. I had a good cry yesterday but back to being my regular strong calm self today.Take care everyone.
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