IBC lounge: roll call, support and just a good place to hang out
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Hey everyone. Becky, how wonderful that the end is in sight! How are you feeling these days?
Mara, I keep up with you by reading the Mel's living room thread... I just lurk around to see what everyone is up to. I'm glad you didn't hurt yourself badly in that fall.
Mamacure, have you had your followup appointment? How's your back?
I'm doing OK; can't complain. Take care, all.
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LW, thank you for checking in. Since the fall, I am almost pain free. Only have a small bruise on the front of my thigh. Since I emailed the property managers, they dropped off salt and a shovel. No one actually comes and does any shovelling. I am going out to clear paths and general salting. We are getting mild but the temp is still below 0 at night. I will wear my ice cleats. Also, If I make a path, I will not be walking in frozen footprints which is hard to deal with.
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Wo Becky, time has flown on Xeloda. Congratulations.
Hey Mara, left the shovel and salt! Bloody hell, coulda done more than that. Anyway, glad you’re recovering from the fall. Take it easy on the ice.
LW, you sound okay. Okay is good, right?
I'm 8 years post bc treatment. All good.
Best wishes to all.
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TT, I cannot agree more. Thankfully, the temperature is going above freezing. So will let it melt and apply salt. I also wipe my mailbox down, vacuum my own floor and railings. I don't do the whole building, just my floor.
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Good to hear from everyone & all doing well. Time is flying by. Back pain is little better but still comes & goes. Lymphedema getting worse, ugh. New oncologist is great, new cancer center is amazing & beautiful, not that we want to be there. They are new so no waiting which is nice. I’m getting baseline scans done soon so very nervous. New doc also checking tumor markers & Dexa scan to check bone density. Trying to enjoy each day instead of worrying all the time. Take care all, will be watching the Super Bowl in my comfy PJs.
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TT--great news on your 8 year mark. Keep up the good work! And yes, I'm doing well, thanks.
Mara--how ridiculous for them to bring you a shovel and salt. What the hell? That's infuriating.
Mamacure--nice to hear from you. My LE is pretty stable but annoying; I am resigned to having one arm larger than the other. I'm just not going to let LE run my life but I do get tired of "managing" it. As far as I know I won't ever have any more scans unless I get some weird pain or symptom. I have an annual mammogram on the good side but that's it. Do you know why you're having scans? Will that be an annual thing or what? Let us know when they are scheduled.
Becky--you must be celebrating this week; I'm so happy for you. How are those little ones? Keep in touch with us.
To all the other "IBC Siblings," I hope your lives are happy and healthy. Check in when you can and let us know how you are.
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Paging Lori (LoriCa) if you are still checking this thread. I read your previous posts about the terrible cramping you had a while ago and I'm wondering if that ever resolved or if you found any kind of treatment/relief? For the past several days I have been having the most horrible cramping all over my body... my torso, jaw, thighs... you name it. Just horrible and I can hardly move without something cramping. I've been chugging water and trying to do some stretches but nothing seems to be helping. If you found anything to help, could you share that? Thanks so much, and I hope you're doing well.
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LW the cramping is even worse on Enhertu, specifically during the 2nd week of the chemo cycle. Never found anything to help. I honestly think it's a form of neuropathy. It's fun trying to brush your teeth with a hand that's shaped like a claw!
Sorry I haven't been around much. I got frustrated with the site redesign, and life got in the way. I've been on Enhertu for 2.5 years now and my last scan (Dec) was described as NED by my oncologist, just two spots in my lungs that are too small to measure. I don't expect that to last long given my history, but I'm going to enjoy it while it lasts.
Hope everyone is doing well! (and thanks TT).
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It's so great to hear from you, Lori... and NED!! How freakin' awesome is that? Girl, you are such an inspiration to us all. Sorry to hear that you are still suffering with the horrible cramping; it is so painful.
I never had any typical symptoms of neuropathy but maybe that's the cause. Mine started with a cramping under my shoulder blade I was thinking it might be due to lymphedema but now it seems to be ALL OVER my body. I thought I might be having a heart attack earlier today because of the cramp in my chest. Everything is such a party with this crap. I'm going to see my PCP and get blood work done; I hope it's something simple like a vitamin/mineral deficiency and I can get a pill to take. This is misery.
Thanks again for your response; I do appreciate it and it's wonderful to "see" you. They are supposed to be getting ready to launch the "upgrade" to this place but that's been going on for a year now. Take care and keep in touch.
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Dear Lori, so nice to hear from you, and NED, wow!:) 2.5 years is a long time after being in the dark for so long and so many treatments not working. I am simply out of words - you are a real hero!
Saulius
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Congrats on NED, that is wonderful to hear. I get minor cramping with Herceptin which is made worse if sitting on a chair without a soft seat and back. I have found that beans have improved it a lot for me, if you worry about gas, take a digestive enzyme before eating, can easily mix them up by grinding them and adding to any dish. I get far fewer. Bananas and dark leafy greens help a lot too. There are more foods with potassium and magnesium which will help, add a bit of salt to water and drink it down if no high blood pressure concerns as well.
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Thanks, Mara. I'm on my way to the doctor to get blood tests. I am so miserable with this cramping.
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I have a full metabolic panel done every 3 weeks, and it's not a potassium or magnesium deficiency for me. My team is always impressed that my labs are "perfect" except for the darn polycythemia (high hemoglobin and I think hematocrit).
Those intercostal spasms are the worst. They literally take my breath away. They usually get triggered when I turn my upper body a certain way.
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I just got home from the doctor and the lab. I had an EKG and it was normal, so the doctor has ruled out any heart issues. So now I have to wait on lab results to trickle in before I can get any treatment. I asked about a mild muscle relaxer and she said she wanted to wait in case that "masks" the real problem. When I had to "open and say ahhhh", she got to see one cramp in action; I got a big knot under my chin and my eyes watered. I guess I'll soak in epsom salts and wander the halls tonight.
Lori--you are so right about the intercostals... damn, that hurts! Of course the cramp in the trapezious is a horror as well.
Oh, and the PCP said if the labs don't show any issues then I'll be referred to a neurologist. What great news... not.
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LW, I am sorry about the pain, I hope that there is nothing that requires a neurologist. In your pocket chasing away those nasty spasms and if you have a neurology referral.
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Thank you, Mara. I'm still waiting to hear about my lab work. More waiting.
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hi all,
LW sorry to hear about your cramping. Hope it gets resolved easily.
Everyone, my nightmare came true again. Mets to T2 & small spot on pelvic bone. Via bone scan. This explains my persistent back pain. I am scared. I just saw the results via email & emailed my doc saying I can’t do chemo again. Praying for radiation or other treatments. I hope I caught it early. Haven’t told anyone yet. Ugh why why why. My kids need me. My husband needs me. Please let me live. Please. Thanks for listening.
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Mamacure I'm so sorry!
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Mamacure--I'm speechless, truly. So sorry to hear of the progression and I know you are right back in that horror of anxiety. We will be right here with you, for whatever that's worth. I just don't have words, except I'm so sorry. I know you'll fight hard so let us know what you learn about treatment. Love and hugs.
Hey Blue--it's good to see you post. How are you these days?
Mara--hope you're well. My muscle cramps have pretty much resolved but I'd still like to know what caused them. I had them while I was in chemo and my PCP thinks it may be some residual SE from treatment but I see my MO in a couple of weeks and will discuss it with him. They did find that I had a UTI but I wasn't having any symptoms (thankfully) so she gave me an antibiotic.
My PCP sent me a Cologuard Kit (for colon cancer screening) and I am afraid to do the test. Every damn thing scares me now and I'd just rather avoid it. Has anyone done the Cologuard test?
I hope everyone is hanging in there. Check in when you can; we worry about you.
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Thank you everyone, more bad news via CT scan. Tiny Mets in liver & lungs. Also thickened Colon. Whatever that means. My doc has not called me back. It’s only been 7 months since I finished xeloda, ugh. cancer really sucks.
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Oh, Mamacure! I'm so very sorry to hear this. Sending love and prayers for you, sweet friend.
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Oh Mamacure, I'm so sorry to know that you are dealing with this crap again. My heart hurts for you. As LW said above, we are here for you! Sending love and hugs!
LW - interesting about the cramps...I just started getting cramps throughout my body a few weeks ago. I'm back in PT and the first one occurred there and I've had several others while I'm there, but not just there. Today I had a bad one in my lower back while laying down and my therapist was working on my arm. I see my neurologist on Thursday, so we'll see what she says. Keep us posted on what the neurologist says.
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Mamacure - I'm really at a loss for words. I hope that your doctor gets back to you soon and you get a plan in place asap. I know it helps ease anxiety to have a course of action. I can't imagine what you are going through right now.
I don't remember details of your treatment - have you been to an IBC specialist?
Hi LW! I'm good. Nothing new for me recently, which is good news. Life never returned to normal post treatment, but I've learned to accept that by now.
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Serendipity--Oh my goodness; I'm sorry you are also having the body cramps. Isn't it awful? Weirdly, all my blood work and labs have been normal; my PCP is stumped. I have not made an appointment with the neurologist yet; I see my MO in a couple of weeks and want to hear what he thinks. I will be very interested to hear what your neurologist says so please report back. Take care.
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Hey Blue. So good to "see" you and to hear that you're doing OK. I suppose our lives never return to the old normal after going through all the cancer crap but we learn to adjust. Take care and keep in touch.
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Thank you LW! I'll keep you posted on what my neurologist thinks.
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Hi everyone,
Thank you for all the sweet messages. So glad to know all of you here for supporters who “get it”. I feel much better after talking with my oncologist last night. She is not too worried about the liver lung and colon, liver might be a tiny cyst previously noted (I went back and just checked my old CT and it was noted there) thank God. Not sure why not worried about the lung but I’ll take it. So a lesson learned here for me is that not everything that lights up on scans are bad (?!?) my previous oncologist would write notes before releasing results but might be a new law where they just release it straight away now…I’m hoping & praying that T2 spine is degenerative and not metasis. Worried about iliac pelvis bone, will get biopsy on it soon to find out. I hope they schedule me soon. Take care everyone.
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Good news mamacure. All that glitters is not gold! You can breathe out. Keep us posted on your T2 and the biopsy of the pesky pelvic bone.
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Oh mamacure I’ve been thinking of you a lot. I’m so sorry and my heart hurts knowing that you’re dealing with this. This is all so unfair. I hope they get you in quickly for the biopsy. Praying you get some good news. Sending all my love and strength your way
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Hi Mamacure,
Glad to hear that your Oncologist is not worried. I remember getting warned about the new law by multiple medical professionals. I wish there was a better way to catch the special cases where the results can be misleading and downright scary. I've also had at least one spot show up on a scan (I think more than one but not 100% sure) that the Drs. were not worried about and it was a repeat with no changes.
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