2017 Diagnosed-- A Place To Share "Whats Next"
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ByHisGraceTwice—- sorry I mixed up your chemo days. Have to do better at remembering. 😞
Tuesday didn’t sound like fun. 20 trips to the throne definitely brings back not-fond memories. Keep in mind Welchol. That’s the repurposed cholesterol med being used now for diarrhea from rads and/or chemo. Hope you won’t need it, but it’s something to have up your sleeve
Herceptin causes nosebleeds? Is it from a drying of the sinuses?
Hope the dentist corrects strike #3 with your bridge.
What a day. Ouch.
Did you sleep last night?
Hoping you start feeling better real soon
I am determined to get laundry done tonight. One load done. 2nd load in dryer, fluffy dry. And last load is in washing machine. Laundry is a tough task for me. I have a front loader washer so I have to bend and twist a lot which kills my back. Probably why I put off laundry as long as possible
Ibrance has been good so far. My arthritis pains are noticeable now so I am thinking Ibrance must be shrinking bone mets lessening their pain so arthritis pain can be felt. That’s my theory and I am sticking to it.
Did I mention my Vit D levels had dropped again? I would suggest for everyone to ask to have their Vit D levels checked when bloodwork is ordered. I know a lot of Stage 4 people have a lower than normal level of Vit D. I don’t know if the cancer causes the drop or if having a lower Vit D gives cancer an environment to wake up and grow?? In January my Vit D was 17 and I was put on 50,000 units once a week for 8 weeks followed by daily 800 units of Vit D. Count in May was down to 13 so I now take 5,000 IU daily. Hope that raises my Vit D
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DG — I’ll ask about Vit D level check. I already was way beLow normal before MBC and chemo. I take 2,000 units of D2 and 2,000 units if D3 daily. Your vitamin D levels were below the bottom of the barrel. When will they retest?
Dentist able to do a temporary fix, at least it’s not cutting into the side of my cheek. With coronavirus restrictions they are into July for being able to do regular full repairs.
Did get about six hours asleep in the last 24, so that’s a vast improvement. Herceptin does cause a drying of the sinuses, I’ve been staying on top of it with saline spray solution and gel, but not sure what happened on Tuesday, it was a mess but fortunately no repeat.
D has not reappeared thank goodness.
One advantage to not going anywhere except chemo, is a much reduced laundry load around my house. Front loaders are literally “a pain“ to get in and out of even without the back issues
Wore wig to the dentist today. That was the first experience. Not sure I like it. I’m glad I actually had the mask on; it held the wig in place.
We had about 100 protesters about a mile from my house today. Trump was in town at a neighborhood church. Fortunately, no violence.
Hope your back eases off, not to do laundry, just so you won’t have as much pain.
My biggest problem right now is lack of energy. All my RBC counts are below normal, but it helps steady the last two weeks After resting, I feel like I can get up and do something and my energy lasts about seven minutes and I’ve hit the wall. Back to bed I go resting but not sleeping.
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j
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ByHisGraceTwice—. I hear you on hitting the wall ref energy. My red blood counts are low. Way lower than on chemo. I sit in my recliner and feel like I could jump up and do this and that. As you wrote, I tackle something for about 10 mins before needing to sit down. I sit for literally 1 minute before my mind is convinced I am ready to go. Ha Ha Ha. Too bad my mind and body aren’t in agreement.
Ref my Vit D levels, I think I get them checked again in 2 months. That’s just a guess. The news reports that a good chunk of CoVid deaths were people with low Vit D. So this nags at me. I faithfully take 5,000 IU of Vit D3 daily.
You mentioned no big D for you this go round. Well, I know where it went. ☹️ Last 3 days. It’s a known SE of Ibrance. Hoping 3 days us all. So far so good today.
I only slept until 3 am today (went to bed at midnight) I think I was just too hot to sleep Hoping you are getting sleep as well
Do you have a dentist appointment for July?
Weird weekend. We always watched Live PD Friday and Saturday nights. Now I have to build a new norm. We started watching Live PD with my original BC diagnosis. It just was something we could watch and it was ok if I fell asleep here and there.
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ByHisGraceTwice— keeping you in my thoughts fir tomorrow’s chemo.
Hope all goes well without any hicc
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thanks dg — Tuesday didn’t go well. Fever spiked to [102 over the weekend with O2 sats in the 80s. After doing new labs tues am, seeing my Homemade Bp, o2, temp, charts over the weekend, NP consulted my asthma doc. The MO said — you’re going across the street to the ED not the infusion clinic. 12 hours later, full of a ringers and IV anabiotic’s,: with far less blood and urine with which I came that had been cultured and chested —— I am COVID-19 negative, and sent home.wirh a DX of kidney infection and infection in my lower lung lobes and a bottle of oral antibiotics to begin taking the next day.
Happy with the outstanding service, a relatively few patients in the ER at the time I was, and vegetable going on with a negative COVID-19 diagnosis to sleep in my own bed.
Feeling much better now. Skipped second week of chemo but it’s al good for next week.
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j
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ByHisGraceTwice—- first, good news and no CoVid19 and good news on being home now.
Sorry you had such an adventure with last treatment. Hopefully, the kidney infection and infection in your lungs heal quickly.
Is your BP and O2 back in range?
Hope sleeping in your bed will give you good sleep and that tomorrow is a better day.
Hugs to you
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ByHisGraceTwice— did you have your next treatment today?
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DodgersGirl — I did, thank you for checking up on me. this week has gone well. More fatigue but none of the other nasty side effects. How are you?
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j
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been pretty quiet here. Hope that means everyone is out enjoying their summer.
I had my annual mammogram last week. I see in my patient portal today that all is clear on the mammogram. I wasn’t happy with the tech. I told her I was dx’d Metastatic in December. She asked me how that happened? Did they miss part of my tumor? And when I told her my mets were in my bones, she said, “oh, you have bone cancer, too?” I explained the mets were from my breast cancer. She asked how I could know that? I wanted to ask if she knew anything about breast cancer.
Also on my patient portal were the results of my blood work from 2 weeks ago. I hate having to wait this long for results. Blood work looks stable and again, my tumor markers continue to go down. In fact, my CA 15-3 is back in normal range.
I started cycle 6 recently.
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DodgersGirl - so glad to hear about your good test results! The tech was really clueless about breast cancer. Her lack of knowledge and her questions sound off-putting.
Sending you best wishes for continued improvement.
I started Raloxifene (generic Evista) 3.5 months ago and extra bone vitamins for my osteoporosis 2.5 months ago. I won’t know if they are working for a very long time. Fingers crossed for that. But since COVID, I have gained weight. To be fair, it probably started in December. I really think my metabolism has slowed down. Combine that with extra snacks. Then a few weeks ago, I hurt my foot. I have to ice it daily. So I need to reign in grazing especially while I’m resting my foot.
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That's great news about your test results, DG - Thanks for the update. Here's to the start of baseball [such as it is] in a couple of weeks - For those of us who love the game, it will be a welcomed distraction.
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Scottie719– baseball was one of the positive things that I saw from moving to Stage 4. Since I retired after my 7 stay in the hospital in February, I thought at least I could watch a full season on games! Boom, enter CoVid and here we are in July with no baseball. LA was supposed to have the All Star game this year. That’s been pushed to 2022. Something to hope to see.
Sure is going to be a weird season playing west coast teams plus AL teams.
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GoKale4320– I think the world has gained CoVid pounds. I started snacking on fruit and nuts instead of junk food. Seems to be helping.
Sure hope your new treatment does wonders for bone strength. I never thought I was going to have to worry about breaking bones as I aged. Surprise.
Sorry to learn of your foot injury and pain. My DD had surgery on her Achilles Tendon last year and had to stay completely off of it for 3 months. Ouch. Hope your foot heals soon. Take care of that injury.
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Good news, Dodge, except for the mamm tech who they obviously yanked from her usual job working in the cafeteria. Jeez.
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Runor—- so funny!! They are really behind after being shut down for months due to CoVid. Maybe she is more comfortable asking , “do you want fries with that?”
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DG — grateful to hear the good results on blood and mammagram. Where do they find these people.ive had friends say dumb things like how do you get BC in you hip? But you’d think a mamma tech would have some working knowledge. Achilles tendon surgery sounds painful With an extended recovery even after the first three months.. How is your daughter?
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ByHisGraceTwice— it was a tough recovery for my DD. Now that she is months past surgery, the pain the surgery was supposed to correct is gone. Ankle is still tender and not back to presurgery levels but the pain is gone, surgery a success.
Hope your weekly treatments are doing what is expected/desired without SE being too bad.
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DG — glad she continues to improve. Had a two week chemo break onefrom our friend d and two from a covid scare. Fever and symptoms landed me in the ER vbut turned out residual kidney and lower respiratory infections. Last chemo went well and now only seven more Taxol to go. Has iBrance been kind to you through the last cycle?
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j
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ByHisGraceTwice— Ibrance has been good this cycle. I didn't sleep last night but it wasn't due to meds. My next MO appointment is in a few weeks. I think they will schedule scans for August. Still really new to these quarterly scans and already don't look forward to them. Hmmmmmph
Did I mention Vit D us still too low so taking a 50,000 IU weekly.
Hope you are getting over the respiratory issues and glad it wasn’t CoVid
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DG — not good your vit D still not coming up where it should. Hang in there. My next scans will be first week in August also. Not sure why the PET unnerves me but the others seem routine. Maybe just haven’t had as much experience with PET Which scans will be on your to do list?
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j
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ByHisGraceTwice: my scans should be 2 CT scans and nuclear bone scan.
I have had 3 PET scans going back to 2017
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DG — I didn’t have a PET until metastasis, but did have initial bone scans and CTs.
Heard the sad new about Kelly Preston’s death tonight, John Travolta’s wife. I’d not heard she had BC. Bless his heart he’s had as much loss as Pierce Brosnan.Celebrity and wealth do not protect from heartache.
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j
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Good evening everyone. I am going to whine for a moment.
I recently was approved to receive Social Security Disability starting next month.
I applied online. Took me nearly 4 hours to fill out the various forms. I haven’t worked since January and probably should have applied earlier but procrastinated until now. I knew I would need details and dates and just didn’t get around to it for months.
I submitted the forms and had a phone interview. Shortly after the interview, I received notification that my application was approved and benefits will start next month.
Well, that should be good news (and it is) but what I feel/felt is that the government didn’t take much time to determine I was going to die. And that just hit me like a ton of bricks. Probably shed more tears over this realization, I am terminal, than anything else so far. Sigh.
Hoping that by sharing this with you guys, I can let go of the sad aspect and focus on the knowledge that my disability will help since I can’t work anymore. Thanks for your time and for this place for sharing.
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Oh man, DG, that is a kick in the teeth. I hear you.
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Thanks Moth
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DodgersGirl - I see it differently. People are granted Social Security disability for a variety reasons but all of them simply cannot work, and they stay on disability for years and years. You just had to prove you worked long enough to qualify and you probably way exceeded the minimum time so it was a no-brainer that they could approve it right away.
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GoKale4320– thank you for your post. I need to look at this the way you described
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Hello ladies! I stumbled across this forum about a week ago. I tried reading through some old posts, never getting through all, but I recognized the names from 2017. You are my peeps!
DodgersGirl - my sister had a similar reaction when she qualified for disability. She has fibromaligia, COPD, anxiety w severe panic attacks, insomnia, and more (no BC). GoKale4320 is correct, it's for those that can no longer work. For my sister, that was 18 years ago.
I've been ok since dx, rads, and AI. I have a love hate relationship w Anastrozole. It keeps cancer at bay, while aging me fast. 2 years, 7 months to go. I've had surgery on my wrist, issues AI brought on. I've got osteopenia in my hip, a SE of AI, now on Fosamax generic. A pill to offset SE from other pill. It is what it is.
I've read how some of your paths have been harder. No rhyme or reason, no faults of our own. My heart goes out to you. I'll be in your pocket as you need. HUGS
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CindyNY— welcome! Glad you found us.
I read thru your SE from Anastrozole. I think that AI aged me 20 years. I felt like an old lady. I am on Letrozole now and find the SE easier. Maybe something to keep in mind. I remember my MO saying if my SE were interfering with QOL to say something and he would prescribe a different AI.
2 years 7 months left. You can do that. Look at what you pushed thru already. Soon it will all. E in the rear view mir
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I went to Sam’s Club this morning. It’s the first time I have been out shopping like that since mid-February
Sam’s still out of most cleaning supplies, toilet paper, hand sanitizers, soap refills, etc But we still found plenty of other items to place in the cart, spending hundreds of dollars.
Tonight I am totally worn out from this one shopping excursion.
Geesh.
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