IBC lounge: roll call, support and just a good place to hang out
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travel text I’m not sure I haven’t talked to him yet although I did send a msg through my health portal yesterday and they have yet to answer back. Hopefully soon and if not I have an appt the 20th of April and I just feel it’s too far away but they want me to heal from surgery but just scared given the nature of the disease yanno
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LoriCA, waving hello back, I've read most of your posts and you really are an inspiration. I pray that the rains don't lead to more problems for you. I did have a slight interruption in the routine because of coronavirus, my onc said that the risk of coming to NYC hospital for Zoladex shot is higher than reward of getting the shot, so I'm skipping those for now. I tried to get transferred to cancer center in upstate NY where I'm living to get them, but they won't accept me as a new patient because of coronavirus concerns.
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bklynstoops i live in upstate ny and that’s where i’m getting treated
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Bklynstoops that really stinks, but I certainly appreciate how high the risk is in NYC. I have a sister who lives just outside of Manhattan (5-6 miles) and my BIL had been taking public transportation into the city every day until last week, I'm very worried about them. Is your oncologist able to help you transfer care to another location near you? Looking at your profile I would guess that you just finished your one year of H&P, so without Zoladex you are on no treatment at all right now? Any discussion of possible (oral) alternative treatments for you? You are pre-menopausal? I'm not really familiar with those treatment options.
Infusion room was crowded again Thursday, I'm glad that everyone is required to wear masks now but it's still scary to be in a room full of strangers. Hemoglobin was higher than last week, but only slightly above normal (16 is the high limit, I was 16.3 this week) so we're going to continue to monitor for now & I'll take my daily aspirin. Headaches have eased up a bit now that it's lower than it was a few weeks ago. My oncologist was in and it was good to see him, but he's still not well and they haven't found the problem. Not covid and nothing contagious, but he's only been working part days so he could touch base with his patients. Afraid he might go back out again. No visitors allowed so I've been having these discussions about suspected progression and treatment options without my husband at my side. He used to always accompany me whenever there was a problem and he hates being left out of the discussion. I miss having him hold my hand. I didn't even have the presence of mind to ask MO to help me understand why when I'm on a chemo that has a high risk of bleeding issues (thins blood, doesn't clot) am I having the exact opposite problem. Guess I need to start making a list of my questions again so I don't forget next time I see him.
Happy Easter to all who celebrate it!
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a lil worried as I have been having like theses quick flashes of light in my prefrial vision. I wrote my oncologist and he said to go to the eye dr. He had his nurse navigator call me. So I did and everything with my eyes look fine and I have 20/20 vision. I am worried about brain Mets. That's my onky symtom. Eye dr wrote onc and said it was prob stress and anxiety. I google my symptoms all day. I know not good. I had almost a pcr after surgery. A very good response. So I dunno what is going in. Could it be anxiety?
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Missmom, Yes, anxiety can cause vision problems, generally associated with high blood pressure. You could ask for anxiety meds to see if they help.
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I sure hope so. I’ve only heard of few people with flashes that had brain Mets. Normally you have headaches and nausea, seizures ect. IV really got to get my anxiety under control. I woke up this am nauseous and had to take a zofran. I am in clonazapam but I don’t think it’s working anymore.
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I was so upset yesterday went to see my cancer doc and my mom couldn't come in with my cuz she's my extra set of ears as I get very anxious and don't remember what they said. This whole country is a mess. And now tomorrow it's mandatory that we all wear masks in public or we will get fined. As I live in New York
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Missmom I think it’s the stress. I also had few changes after mastectomy and was stressed. I got my oncologist to do a ct scan as well and it camenormal. It went away on it’s own.
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The area above my mastectomy scar hurts when pressed and when I lift my arm it hurts. I finished radiation in February this year. Any. Ideas friends
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Dear Lori ,
Hope you had a lovely Easter. Lots of love and hugs.
Regards
Flora
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Dear Flo, if you don't notice/feel any other things, your scar might still be healing. February is really not far away compared to what damage sometimes radiation does. They say sometimes it takes 6-8 months for the skin to really come back "to its normal":/ At least this is what our doctor says... Saulius
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Flo, I'm thinking you probably had a heavy dose of rads thrown at you, like I did. I'm certain it destroyed any lurking cancer cells in the skin of my chest, armpit, and neck. But it sure cooked the tissues in those areas, and the active effects of radiation take quite a while to resolve after treatments are finished. Even now, almost 8 years later, I still have a wonky shoulder on that side and stretching can be painful.
You might give your RO a call to describe what you're experiencing, and ask if it's an expected part of recovery. Wishing you the best. SB
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Dear Saulius,
Thank you so much for the reply. I have an appointment with the RO next week and hope it’s in person and not over the phone. The whole left side is painful to touch. The scar line does not hurt.
Hope you are taking good care in these times. Lithuania Is doing much better. Please take care and regards to your wife.
Regards
Flira
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Dear Sbelizabeth.
Thank you so much. They gave me 16 doses of hypo fractionated doses of radiation. They give it based on some trials in UK which found this dose is as good. I asked them for more but they only gave me 42 grays.
I wish you stay happy and healthy always. These treatments do take so much from us. As my path report changed my Her2 from negative to positive and I had residual cancer I am getting herceptin and perjeta so have those side effects in addition to hormonal treatments I get.
Please stay safe and I love you all.
Regards
Flira
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I am returning my friends!
First diagnosed 1997 with stage 0-1 left BC, radiation for about a month, 2 lumpectomies. Forward to 2009, IBC Stage IV left Breast AC. Tamoxifen. 2010 double mastectomy. 5 years forward, Mets to LSpine, radiation. Femara for a couple months, severe bone main, switched to IM Faslodex, IV Zoledronic Acid q3 weeks. Caused too much chills so it was stopped. Continued on Faslodex with yearly Bone Scans/CT scans. 2020, second bone Mets found L3 spine. Options?
VCG. Mary0 -
Activern, welcome. Wow you have an interesting medical journey. I’ve got no idea about your options. What does your MO suggest?
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Dear Flo, what did your RO say? Are you okay? Saulius
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Hi Saulius,
All the appointments have been made telephonic now. Yesterday spoke with my oncologist and she thinks these are the side effects which will take time to go. Monday gave another telephonic appointment with my RO and let’s see what he says.
I have been have some itching in the non cancer breast from past few months and doctor thinks because of dry skin. Seems itching reduced but when I try to lift my healthy breast it hurts when pressed where the breast starts from the rib cage. No skin changes. I am on hormonal treatment and herceptin and perjeta so don’t know what’s going on. Feel so scared what if it goes to healthy breast. Left oncologist a message again .
Hope you all are well and my regards to your wife.
Regards
Flora
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Hi Travelnext I have been having some itching in the healthy breast from past few months but reduced now. Now I feel as if the breast hurts when I press them specially where the breast starts over the rib cage. I am on hormonal treatment and herceptin and perjeta. Can hormonal treatment cause this. I don’t have any skin changes .
Thank you
Flora
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Hi Flo,
Since you are on H/P - do you not still see your oncologist? I see mine prior to infusion...
I hope this turns out to be nothing to worry about!
blue
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hi Blue 22 yes I do what they did it over the phone for me. The appointment was yesterday but I have left her a voice mail. I got an appointment for my GP to have a look for me on Tuesday. Hoping this is due to the hormonal treatment. My whole breast doesn’t ache it’s where the breast starts from the rib cage it hurts and all my area on the chest when pressed is tender. Thank you so much and prayers needed.
Love
Flir
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Femara. To keep my immunity healthy. I hate Femara.
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activern, You could try Tamoxifen instead of Femara?
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Hi everyone, how's it with staying inside?
TT, you asked about the Netherlands. We have an intelligent lockdown for 7 weeks now. I had to learn to give lessons online, I'm getting better at it. Shops start opening again, at least most of the people stay inside.
People are complaining about all the measures but I don't mind, I've lived through these things before. During the chemo's I had to stay inside, couldn't function outside anyway, my immune system was vulnerable, so I was avoiding contact and disinfecting everything. I went back to that mode and it keeps me sane.
Both my children are back home and I'm loving it. Next month I go again for scans, I worry but I'm thankful every day for spending valuable time with my family.
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Moreshoes, Great to hear from you. Everyone is going through different phases of isolation with this pandemic. This week my state here has allowed restricted parks being opened, 50km of driving range, and some non-essential shopping. They know if infections spike in two weeks that restrictions will be back on. The government acted early here and we’ve only had 85 deaths in a country with 25 m people.
You’re right, cancer people have done all this isolation thing before. Infections were serious during chemo. I should know, I landed in hospital. Good luck with your scans
Hoping to hear from Lori on this forum soon. I know from Twitter that she’s had some pretty major chemo during this time when getting in and out of a hospital is a big risk.
Stay safe everyone.
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I'm lurking around TT, just haven't had much to say and have been keeping busy. Seems like reducing my aspirin dosage has the bleeding under control, at least so far. And I haven't had a problem with headaches the past few days so I don't think I'll need phlebotomy right away, which is a good thing. I've been feeling much better all around these past few days. Next chemo is Thursday at our brand new state-of-the-art cancer center, so it will be interesting to see how my routine may change.
I usually only grow tomatoes and peppers plus several herbs since I'm limited on garden space (we're hardscaped with a pool and grill island taking up much of the yard, the border garden is mostly palms and sharp pointy things that try to kill you). This year I added zucchini, eggplant, peas, and cucumbers, plus broccoli, cauliflower, and romaine started from seed that I'm not sure will be successful since they are cool weather crops and we've already been hit with a heatwave. I'm on the coast and typically we'd have a heavy marine layer in May and June that keeps things cool, but I'm not sure if the pattern will hold this year since we've already had weather that is more typical of July. All of my garden is in pots, so it's a lot of work to maintain in this dry climate. It was tough to find plants this year, and all of the seed companies stopped taking orders last month because they were swamped with orders, but I had some seeds at home to fill in for the plants I wasn't able to find, and even though it was late to start them I'm giving it a try. I won't be able to feed us with the limited number of plants we have, but at least it should save a few trips to the grocery store and nothing tastes better than vegetables and fruit fresh from the garden. I also have grapefruit and lemon trees, plus a couple strawberry plants. We're also trying to grab dried beans and legumes whenever we find them (only once so far, 4 lbs, and everything online is sold out) because I'm worried about an upcoming meat shortage due to all of the processing plant closures. I'm not really a big fan of beans, but I need to have a reliable protein source.
My governor is one of the strictest and it looks like our full lockdown will last at least another month, the Bay area has already ordered it through the end of May now and I'm sure the rest of the state will follow. I'm betting it lasts through the summer. The only relaxing we've had is that we're now allowing certain "elective" surgeries such as tumor removals, good news for people who have been recently diagnosed with cancer. Isolating at home is no big deal for me, that's how I've spent most of the past 2.5 years unfortunately. My husband thankfully still has enough work to keep him working 6 days a week so I'm used to being alone. I am acutely aware of the public health concerns, and at the same time I understand why some people want to be able to return to work, specifically those who don't have safety nets and need to be able to work to pay their bills and put food on their tables. I have no sympathy for entitled people who are collecting their full paycheck while working from home and are complaining only because their roots are showing or they are tired of having to cook and wash dishes and scrub their own toilet and spend time with their children or they just miss being with their friends. Since it appears that having antibodies doesn't prevent anyone from becoming reinfected and infecting others, it doesn't look like there is going to be an easy way out of this mess. I'm tired of listening to extremists on both sides of the issue, the ones who think we should open everything immediately and the ones who think we should stay locked down for months on end.
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Dear Lori, I love English word "lurking":) but how is your health and situation overall? Saulius
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Dear Lori,
Wishing you good health and happiness always. I am so happy you are feeling better. After reading your post I also want to do gardening and went looking for plants that can bloom. The stores here said that they are late in getting the deliveries. I have almost stopped watching news and keep myself distracted. These days I am home schooling my 5 year old as it’s like always running to catch her to study. I have six wild rabbits in my back yard and all the time I love feeing them.
Love
Flor
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Saulius other than dealing with these stupid symptoms and side effects I'm doing surprisingly well. I have some pain from the tumor under my arm, but that's really it. From the outside you'd never know there is anything wrong with me. I think it helps that my body weight is where it should be and I don't have any additional complications from being overweight like many in the US do (60% of our population is overweight or obese). I hate the fatigue and I sleep more than I'd like, but my husband keeps telling me that my body needs rest to heal, and if my body says it needs more sleep it's because it's fighting so hard and I need to give in to it. The first ten days after my infusion are rough, but then I gradually start to feel better. Today I feel almost normal (after ten hours of sleep), but of course my next infusion is tomorrow and the cycle starts all over again. Hoping I don't have another fever episode because they are really getting hard on me. Waking up in the middle of the night with rigors so bad I couldn't catch my breath was scary.
Lurking is a great word. It has a slightly different meaning with regard to social media than it does in general. I have no intent to ambush anyone haha!
Flora I'm not surprised that deliveries are late. Seems like in addition to baking bread, gardening has become a new hobby for many people stuck at home. I hope you find some plants soon, and have fun chasing around your 5 year old.
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