2017 Diagnosed-- A Place To Share "Whats Next"
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Saw my MO this week. The feeling is the scans show stable or improving spots. Scans again in 3 months. Bloodwork was much better this month. Platelets are almost to a low end normal number. ANC high enough to start next dose of Ibrance. Appears dose reduction to 100 mg benefits me. Now just have to hope dose reduction still kicks cancer’s butt.
Tumor markers are not back yet.
MO did mention the scan results showing a healing fracture of my collarbone. Didn’t indicate there would be any change to my treatment plan And I got the explanation why a fracture would cause me pain (which I am experiencing) I posted on bone mets thread to ask other Metsters if having scans finding broken bones is common
Will start Cycle 6 of Ibrance next week.
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Dodgersgirl,
You are in my thoughts and prayers.
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Castigame— how are you doing??
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Well Dodge, that sound pretty much like overall good news to me. Considering the circumstances. I am happy for you. Wish you weren't going through this, wish NONE of us were. But if you must, that news is at least not devastating. I will quit talking now as I seem to not be abel to say what I want to say without sounding dumb so instead and giving you a virtual hug that defies every distancing order that exists.
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Runor, thank you. Felt the virtual hug!
And you could never sound dumb. I marvel at your ability to write about a situation. Such talent
I take my scan results as good news, too. Means I get to remain on treatment course. I hope to stay on my first line treatment for many cycles.
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My tumor markers continue to drop as seen in latest bloodwork!
Hoping that means Ibrance and Letrozole are kicking cancer cell. Pow. Pop. Bam.
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Hello everyone. It has been quite some time since I checked in here, but just wanted to say hello, then do some reading to catch up on how things are with you.
Dodgers-girl, I am so happy to hear that your tumor markers are down; I have just gotten results recently of bloodwork and my tumour markers are lower than they were 2 1/2 years ago. I am almost at the three-year mark since my surgery so keeping my fingers crossed that things keep on being stable. There is a doctor not far from here who sees cancer patients twice a year. I have seen him once and liked him, but because of the coronavirus situation, and knowing that my tumour markers were down, I told them that I felt I would be OK to wait until October to see him again and they agreed, with the proviso that if I had any concerns I should call them right away.
Now that nicer weather is here, we have been busy with yardwork and things are shaping up nicely. Tulips are blooming and I think my oriental poppy will have over 40 blooms this year. Bought my petunias from a local greenhouse today, so plan to get them planted on Monday. Wishing all of you all the best
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53nancy— congrats on lower tumor markers!
I have been outside working in the garden the last few days. Didn’t plant as many plants as last year. Just don’t think I can keep up with as many plants as 2019 saw.
Your tulips and poppies sound pretty
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DodgersGirl, I'm so happy for your good news, and for the opportunity to get out in the garden. Nature really lifts the spirits.
Wishing everyone some peace and joy this summer, despite the circumstances.
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DodgersGirl — hope you've been safely far from the craziness of our US in your garden. We Had some probs Sat night here downtown, but our black female police chief took tight measures to not repeat Sun night. Far as I know, things to night are quiet.
I used to love to garden. Not veggies, flowers, flowerbeds. Loved having something always in bloom. health and expenses caught up with me the last few years. It gives me so much joy. I'd take a cup of tea out just before daybreak and walk around my yard talking to and admiring my darling plants.
How are you feeling? Isn't this now the third week back on iBrance? I'll have infusion Weds this week, then Tues next and 🤞tues from now on.
🌈
j
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I start cycle 5 Ibrance tonight. Side effects are “softer” with 100 mg dose vs 125. Hope that remains a true statement!
Rioters and looters seem to be what comes out each night when the sun goes down. We have been advised to stay in our homes each night. Guess the looters have more rights than I do. Don’t have any issues with peaceful protests but have no patience with looters and those burning and damaging other people’s property. Guess CoVid and MBC isn’t enough to deal with. Now I have to hope we remain safe in our own home. Sigh.
ByHisGraceTwice— did you happen to see a post on another thread about kidney stones and high calcium levels due to bone mets?
Also— good luck tomorrow with your next Infusion
Gardening: what gardening is for me this year is so different from years past. Planted annuals out ftont to add lots of blooms to the perennials. Back yard only has a few veggies planted this year (less to water each day) so I am adding benches and yard decorations and fountains instead. Gardening means short watering then setting outside to take in nature and sun. (My Vit D continues to plummet so adding sun along with higher dosing of vit D pills)
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DG — I didn’t see the post but haveread somewhere about the higher calcium levels in our blood streams from the bone metastasis. It can get high quickly and present a problem in a hurry. Had not heard about the kidney stone aspect though.
I have my next infusion tomorrow, and I am not physically ready for it. This time I have had almost no sleep since the last infusion. Think it’s a combination of the steroids and all the nastiness going on in the world. Didn’t sleep at all until Saturday night. Since then have slept a few 20 min catnaps and that’s about it. 🙏 this cycle of ibrance is gentle on you.
🌈
j
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ByHisGraceTwice—. Here’s hoping you fall asleep and stay asleep tonight.
I didn’t sleep well Saturday or Sunday due to the possible riots in my town. Last night I slept really well—- thinking I was so worn out, I crashed. Hoping you experience something similar tonight
In your pocket for tomorrow’s infusion.
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DG - that sounds horrible being so sleep deprived. I hope you sleep tonight and everything goes smoothly tomorrow 🤗
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moth— thanks!
How are you doing? I think of you often, hoping treatments are doing their job.
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moth — you’ve been on my mind also. How are you feeling? How are treatments ... side effects? Please know I don’t always tell you and although we met not long ago on this threadyou are pressed on my heart and sincerely I think of you often.
🌈
j
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ByHisGraceTwice—. Hoping today went well.
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Hey guys! I'm much better this week than previous weeks! This is my week off chemo (my clinical trial is 3 weeks of immunotherapy & taxol, then 1 week off).
I'm not really tolerating the taxol very well. I struggled with chemo in 2018 as well. I've already had 1 dose reduction and my MO is talking about doing another reduction. Also by now I should have had 9 taxols but I've only had 7. One was cancelled because I woke up with a big fever and UTI; the second because my MO was unhappy with how much fatigue I was experiencing. I was essentially in bed for 2-3 days/week by the end of the last cycle. I'm reluctant to do a reduction because at my 8 week scan my tumors were essentially stable (necrotic lung met is shrinking - which surprised the MO because it's dead tissue; 2 of my liver mets shrank & 1 grew a bit but overall it added up to 'stable') If it's working on the cancer, I want to power through somehow.Separately from the fatigue from chemo & immunotherapy, I have these ongoing fevers, 2-3 times/24 hours. Each fever cycle is about 4 hours. My liver values were wonky & we're trying to protect my liver as much as possible so no tylenol but the advil does little for the fevers. The fevers are draining - usually start with about an hour of full body chills and shivering, then I start getting a bit warmer, then I get crazy hot and I need icepacks on my head and neck. The MO thinks the fevers are related to my cancer & she's letting me manage them on my own (because otherwise I'd have to go ER everytime I hit 38C but I go much higher than that & well, they happen pretty much every day now)
I'm not sure what next week will bring & what my MO will want to do.
thanks for thinking of me!
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moth— STABLE!! Woot woot!!! 👏👏👏
Could the fever be due to cancer being killed off in large chunks on those days??
I had more trouble with Taxol than A/C.
Sending you hugs and hopes that STABLE remains the outcome of future scans.
🌸🌹🌸🌹🌸
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all went well on Thursday. Minimal SEs. Am thrilled with how things are going. I am in the middle of steroids still, but no shakiness or zoomies, just insomnia and irritable. Last time and this a mild husky voice.
Moth -/ all in all good news; great to hear!
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ByHisGraceTwice— do you get a red face flush from steroids? I used to while on Taxol
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DG — no acne. 🤞
just feel myself more cranky more insomnia — think part of it is the state of affairs in Dallas — where will violent thugs next start hurling bricks in windows?
Big shopping mall North Park closed and boarded up — 2 miles south from my home — two blocks north homes still in heaps from the Oct tornado —- four men dressed as Spider-Man stood overnight at nearby intersection; pallets of bricks being delivered all over DFW — intimidation
Your LA mayor dropped $150million from budget of police dept yesterday???
Legos not going to make police officers anymore. Dallas took down a 50 year old Texas Ranger statue yesterdayThis isn’t about George Floyd, THiIS IS INSANITY!!!
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j
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ByHisGraceTwice—. My red face from steroids was a red skin flush, not like acne, more like a flush when embarrassed but much deeper red. While on Taxol, I would have that red face for 12 hours or so. Then it would vanish as quickly as it appeared
I slept really well the last 2 nights. Get up each morning roaring to go. Wish my body would be up to what my mind thinks I could do today. Mentally, I come up with a list of things to do around the house. Then I stand up to do them and soon my back reminds me that I am not who I was last year.
I still get up each day and make a list of what I want to get done and then work thru the day to finish the list. Truth be told, my mental ToDo lists are short. But you eat an elephant one bite at a time and so that is how I tackle each day.
Today I want to clean out the dining room. It has become the dumping ground for “things to put away later”. I won’t complete this project in one day but will work on it til my back screams “stop...sit down... rest”
Waving to everyone. Hope all is well.
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DG -/ understand The energy issue completely. I’ll get up, start doing something all gung ho, and in about 10 minutes I hit a wall. This is so abnormal for me, and one of the most challenging things to adjust. My project yesterday, was putting together a water filter I bought. I’d made up my mind by midnight, I was going to have at least one 3 gallon jug filled. One would think as little sleep as I’ve been doing, it could’ve been accomplished, but no — and work for 10 minutes, rest for an hour and a half, then work another five minutes. I made it, at 10:30 last night, I had my first 3 gallon jug filled with filtered water. I was so proud.
Last night, I had put my hair in little pigtails all over in anticipation of cutting it after midnight last night. Best way to assure a decent nights sleep, I wanted to do it June 5, 2020, because the numbers add up to 8 (not big on numerology, but I do know a little feng shui numerology) — fell asleep after filling the first 3 gallon water jug, and woke up at 6:30 this morning.. Added up my numbers again, I have until tomorrow. LOL
🌈
j
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I never made it to the dining room but did get 2 projects tackled in the kitchen.
Sitting in my recliner after completing the 2nd task, I turned on the tv and got “hooked” on a movie on the Hallmark channel. I HAD to see how it finished. So that shot the rest of the afternoon.
DD here to have dinner with us. Then we watched a movie.
Maybe tomorrow I will make it to the dining room?
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ByHisGraceTwice— tomorrow another round of chemo for you?
Today’s task was doing laundry. Here is is late afternoon and I haven’t started. Sigh.
Got side tracked by other tasks. Clearly a sign I didn’t want to do wash today. Got 3 rooms vacuumed though. So did do something! Nice thing about laundry is that it can always wait a day.
Maybe after dinner I can get a load done. ???
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ok. have a question please!! March 2019 told I have cancer stage 1 grade 1 and 2 invasive mammary, December 2019 had final reconstruction, June 10. 2020 ultrasound for new mass, told I need biopsy. If this is cancer does that mean stage IV??
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beep7bop — not a doctor, just experienced medical services consumer. Before I had breast cancer I had 15 plus biopsies which were not cancer.
If your mass is cancer it can be a new cancer or if in the same breast as your originalcancer it can be a local recurrence. Staging depends on all the same factors as your initial diagnosis. I think the only way to automatically be classified as Stage 4 is if your cancer hasspread to a distant part of your body. Hope this helps. Best wishes.
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j
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beep7bop—- sending you a hug and best wishes for your biopsy. Agree with ByHisGraceTwice. Would be St 4 if mass is distant from your breast.
I had 2 spots biopsied 1 year after diagnosis. Both were non cancer.
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DG — well Da^^— the long reply I wrote you disappeared. You’re in luck, this one will be considerably shorter. LOL
Chemo is now on Tuesday, and hopefully will be on Tuesdays from now on. Had a wretched time with diarrhea yesterday, 20 episodes before noon, and chemo didn’t start until 9. I literally would leave the bathroom and before I could get back to my recliner, I had to turn around and go back.
chemo nurses brought the doctor down and he started me on lomotil immediately.— since I was to get five bags of goodies, he didn’t want to add something else IV so we started oral tablets. 8 doses of two tablets each to get it under control. Thought about you and your hospitalization experience many times in those few hours.
Post chemo, had my first major Herceptin nosebleed.
Number three streak bad luck was a dental bridge broke. Luckily, I am seeing the dentist first thing in the morning.
Good news is, bad things come in three, so I’m done. Only good luck things from now on.
How’s this cycle of iBrance going so far?
🌈
j
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