August 2015 Chemo Group
Comments
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Just to clarify - I got an iron infusion....not a blood transfusion. My hemoglobin was 10 which was on the lowest number in the range.
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Checking in, I've been sleeping a ton since my final treatment Friday. Keep waking up in a sweat, then get chilly. Can't find any thermometers in the house, so I've no idea whether I have a fever or not, although my hubby's hand-to-forehead test is usually reliable and he says not. I'm still having a bad case of dyspepsia, not much appetite. Thank God for chicken broth.
Yesterday around 4:00, after I'd been snoozing all day in the same clothes I wore to my infusion on Friday, hubby and son woke me up because son wanted to "show me something". Groggy, but game, I let them bundle me into the car and drive me across town. Within a few seconds of getting out of the car, I realized that they were taking me to a favorite restaurant,and all our friends were waiting there to surprise me with a celebration of being done with chemo! It was touching, but unnerving, because I felt such a mess. They gave me a sweet card and flowers, luckily I was able to eat something, then we went back home and I crashed again. I was only up this morning long enough to get a shower and go out for a bagel breakfast. Back home, back in bed. I'm reading a dense hIstorical tome, I really should be reading something less taxing, but at least it's absorbing enough that I don't think so much about how yucky I feel. Then I sleep some more. I'll probably take another sick day tomorrow and sleep another twelve hours.
Glad to be moving on to just the Herceptin, although I was surprised to find out from the nurse on Friday that my treatment days, while less frequent, will not be much shorter. It's because they're going to give me three times the Herceptin that I've been getting. I'm mildly allergic to it, so they give it to me very slowly. That means a full day at the infusion center, Benadryl, the whole nine yards. Every three weeks for a year. Talk about a marathon!
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bluefrog, I've been getting the twitching since the last round (4). My guess is that it's from some kind of electrolyte imbalance, so I'm taking more magnesium and eating foods that are high in potassium. It's probably futile, but gives me the illusion of control.
mom2aboy, what novel are you reading? I've always been a huge reader, but haven't read nary a book since my diagnosis. I've been too consumed with Netflix.
On another note. . . they didn't even encourage you to shower before the brunch?!
Well, it happened. I cancelled my classes today. Yesterday I was just feeling too hit after going on a short walk and then to my gentle yoga class, so I made today an online-activity day and called it in. First time I've cancelled class in eight years of teaching, but I think I earned it. I'm gonna try to read and sleep today, instead of trying to be productive (whatever that means anymore).
MsBrompton, I gotta say that the traffic light analogy helped me make this decision, so thank you for that!
Much love, ladies.
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Several of us in the March chemo group had eye twitching, but five months post chemo, no residual issues for me.Hoping the same for those having twitches!
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Hi everyone. I got eye twitching too, so much that I got used to it. 13 days post final chemo it disappeared and has not come back.
Kate, I too use the traffic lights in my decision making now! I think it works well for those of us who used to push ourselves to the limit.
So now there's a 'hard core' of us doing 9 more months on Herceptin... Let's keep in touch :-)
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KateB79 - I've had strange eye twitching too. Sometimes if feels like a dueling banjo competition between both my lids. I'm a couple of weeks out from my last chemo and the twitching is still there, but it's slowed down. I've started drinking something called, WTRMLN WTR (got it from Costco) and it's basically cold pressed watermelon juice that boasts a ton of electrolytes. I don't know if it helps any, but it tastes pretty darn good.
Wishing you all happy thoughts and good vibes.
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I didn't notice much about the eye twitching, It happened from time to time anyway.... But my stomach/ tummy definitely were twitching for a while (or is that a fluttering in the heart?) But they are all gone now... (6 wks after last chemo).
Still waiting for the Echo appt (12/17!)0 -
superius, my stomach/tummy was twitching, too. . . . More so after round 4, but a little bit this time, too. This is insane! It's reassuring that weird s*** happens to others, and that it's not just me.
Round 5 is officially kicking my butt, though I don't blame round 5. In the scheme of things, this one hasn't been too bad: my digestion is normal and, other than the twitching, nothing too horribly weird has cropped up. I'm getting used to the night sweats, etc. BUT THE FATIGUE. I've tried to describe it to others, but it's indescribable. It's the kind of fatigue that means my phone tells me I walked 120 steps yesterday, the kind of fatigue that means I feel like I need to sit down if I go from the living room to the kitchen, the kind of fatigue that makes me wish I had a seat in the shower. I slept about 12 hours last night; I'm going to attempt a walk around the block today and see how that goes, and I plan to sit down and teach tomorrow (not something I've ever done). . . . I guess this is what they mean by "cumulative fatigue."
You know what, though? The end is in sight. There it is--I can see it.
Something else: for my first four infusions, I took Ativan to sleep at night, and had horrible emotional SEs that I blamed on the chemo. I also took Zofran every six hours, petrified of puking. This time, I only took Zofran as needed, which meant that I came off of it on Saturday, and no Ativan. Not surprisingly, for me, anyway, I think not taking so many pills has affected my world view in a positive way. I haven't had any crying jags or adult temper tantrums! Then again, maybe I'm just too tired. . . .
Some good news: I spoke with the nurse navigator at my surgeon's office yesterday, and she's going to coordinate both the genetic testing (for which she'll have to fight my insurance company, and I may only be able to have BRCA testing, but that's a long story) AND my second MX and revision surgery. I asked if I should have a plastics consult, and she said, "yes, because we want your chest to look the way you want it to look." I'll be meeting two plastic surgeons at some point in the near future. . . . Really looking forward to being symmetrical. Of all the things to be thinking about right now, and that's where my mind goes.
MsBrompton, I'm right here with you in the Herceptin club!
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Kate, I am with you on the fatigue and how it isn't possible to explain it to someone who hasn't lived it.
I actually bought a shower stool from Amazon (it was only like $30). This whole thing is so incredible. Just a few months ago I was a strong, active, young(ish) person who biked 25 miles without thinking twice almost every day, ran, worked out, etc. and now I own a shower stool!
And, I have been weaning myself off of "sleeping pills" whatever that may be, I have used ambient and ativan primarily but am trying to just get off of all of that stuff because I think I feel a lot better without it (and just accept that I will be awake in the middle of the night for a while).
So I had bloodwork yesterday because I still feel like crap and have had a steady 99.9 temp for a week. My hemoglobin dropped from an already really low 7.2 to 6.8! No wonder I feel awful! I am going in the morning to get two units of blood.
I hope everyone has a relatively SE free week!
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Notdoneyet, I used to be a powerlifter. At the gym four, five days a week, squatting and deadlifting more than my body weight for reps, bench pressing close to 125. At first, when my MO was all like, "no commercial gym; too many germs, and you won't feel like going, anyway," I didn't believe her. But, yeah, she was right. Now I'm happy with myself if I can walk my dogs once a day!
6.8 . . . whoa. . . I really hope the transfusion helps!
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Thursday will be 3 weeks since my last chemo. Yesterday I decided I would go to the gym. It was the day I was going to start living again. Well 5 mins into my cardio warm-up I was huffing and puffing like a person who smokes 2 packs of cigarettes a day, and has never been to the gym. So I ditched the idea that I was going to attempt a back workout. Just did a half hour of cardio and then was done for the rest of the day. Maybe next week. I would like to feel strong again. This fatigue just won't let up.
As I sit here I am having such a bad not flash I can feel the sweat running down my chest between my foobs. It is also running down my prickly head. Fun times.
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Hi DeeRatz, I'm right behind you. I'm 13 days PFC. I have an indoor rower and I can only handle 5 minutes on it. It's going to be a looooong way to recovery. Just keep at it :-)
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Oh yeah the fatigue... I finally felt it lifted after the 5 week mark. & suddently realized I wasn't huffing & puffing!
I have been using a stepping stool (just those rubbermaid thingy) in the shower/ bath. Since I had a picc line, I couldn't take "Shower"; and they said not sitting down in the tub in case your legs are weak & you couldn't get up, etc... So! I have a big 5gal bucket & take "bath" -- we have it in the shower to catch the cold water when you turn the tap on, for flashing toilet etc. Saved TONS of water this summer here in California! I just took the stool out last week, since the air is a bit cold in the bathroom, and FINALLY felt my legs won't give out!!! Ahhhh hot water hitting my back!
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Superius, I had a PICC line too. Imagine my delight showering for the first time in months sans the baggie :-)
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KateB, You are such an eloquent writer. Hugs to you- I'm sorry about all the complicated stuff happening with family and close friends...and the friggin' monkey wrench cancer throws into the whole works. You seem so good and tough though (even your counts are decent!), and inspiring.
Mom2aBoy, Hooray for reaching the end of the tunnel!!! Cheers to all of you finishing last rounds...Octogirl- you just had your last one recently. Here's to a as speedy of a recovery as possible!!
BlueFrog, Yes on that eyelid twitch after #2. Many of you mentioned twiches and such. It's been my upper left eyelid and the twitch comes and goes. Really obnoxious!
Yep, The fatigue sucks. Sore muscles, "heavy" legs, shit for stamina. Get winded just carrying my tool bags! Then, took a smaller boat out and only made it to end of the channel before returning; too pooped. Counts are low as hell, white cells and reds. Is that from not eating red meat, poultry and dairy all my life? (I have food allergies) Or maybe from being a somewhat short person? (Less blood?)
One step at a time. If cancer had a neck, I'd wring it!! The S.O.B. isn't gonna get the best of me for long! Or any of you!
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Bloody side effects gals! And my eyelid is twitching again (18 days post final chemo), though I know that's tiny compared with what some of you are going through. GRRR. But slowly slowly we will come out of this. Good luck with the Tx notdoneyet. 6.8 is about half what you need.
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msBrompton, ha! That is exactly what my doctor said! He said "you probably feel this way because you only have half your blood!" That was when I had 7.2, at 6.8 he said "ok, NOW you need more blood!" Lol, I think I needed more blood a while ago... My doctor is really conservative with treatments, he believes that the more the body can do the better, and he has this attitude that I am young so I can handle it (but obviously within limits!)
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birdysmom, I think getting enough protein is important, I am feeling better after some protein shakes and some other high protein foods, although red meat isn't appealing to me right now at all.
I am a tall person with lots of muscles so theoretically a lot of blood when healthy, and yet I am walking around with less blood than a child would have... So, idk if size matters. I think chemo just kicks everyone's ass in some way or another!
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Well, it is official. I can skip cycle 6. That means my last Carbo was 2 weeks ago and my last Abraxane will be this Thursday. Still have months and months of Herceptin so I am not going anywhere! But I get to move on to surgery. My LX is scheduled for Dec. 11th. I am good with just a LX, but I have always wanted a breast reduction and I worked up the courage to ask my surgeon today. She was quickly on board--even told me it could possibly lead to fewer radiation days. But I am unsure--more surgery, more risks. We (DH and I) will meet with a PS to ask all our questions. I asked DH if he would prefer larger or perkier. He said perkier because I would have fewer back problems. Love him! But still...what to do...
And yes to this fatigue! I feel SO lazy. But I am so unsteady on my feet and easily winded. And I am more attuned to the eye twitching since we brought it up--that can go away any day now.
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Musogirl, I'm getting a breast reduction on my good side to balance my new (smaller, perkier) breast on the cancer side. I really like the smaller side already. Easier to get around (and I wasn't big!). Husband has "no view". Surgeon said breast reduction is easy, expanding much harder.
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Thanks, birdysmom!
Yay, musosgirl! I'm glad they're letting you off early for good behavior.
notdoneyet, I get what you're saying. I'm 5'10 and used to be solid muscle (now things are redistributing a bit. . . ), and I do wonder if that makes a difference. Three cheers for your doc (I actually respect the ethos that doing less is better for the body), and for that upcoming transfusion. You're having it today, right? Hope you feel tons better.
DeeRatz, my onc said it takes at least six weeks to get back to exercising regularly. She told me to listen to my body. Right now, my body says "lie on the couch," but I'm trying to get a little bit of exercise here and there. It'll come back. And think of how great it will be when we CAN get those back workouts in!
Honestly, other than the fatigue--I mean, I seriously have to sit down between getting out of the shower and getting dressed--and twitchy eyes, this round has been less unpleasant than the round-who-shall-not-be-named. Now if the prunes would do their thing, I'd be set.
There's light at the end of this tunnel.
Here's a question: when should I schedule my next MX and revision to the first? It'll be on the right side, and I'm right-handed (and need my right arm to draw complicated diagrams on chalkboards). . . . Anyone have a dominant-side MX without sentinel node biopsy? It was that armpit incision that got me last time. Then again, I hadn't just had hard-core chemo last time. Thoughts?
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I am getting blood right now! I already feel better. Next week neulasta for certain, maybe that will keep me above water. I also just learned that they have Popsicles, ice cream and sherbet here for Monday instead of ice chips! Yay because the ice chips made me queasy.
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Great to see the blood going in, notdoneyet.
Kate, I decided to have my surgery as soon as possible after ending chemo. It's in 2 weeks time (5 weeks PFC). I'll let you know whether that was a good idea. The surgeon wouldn't do it any earlier as he wanted me to recover from chemo, but I had to argue hard to get it this early (he was going on about 6 months). As it is, the whole of this breast cancer sh*t will have been in 2015 and I can mentally start 2016 in a different frame of mind. For me, that was more important than the physical stuff.
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Kate. They really have this down to the smallest details... What your Dr told you about the 6 week mark... I just passed that 2 days ago. My MO said it would take 6 weeks for the Immune to be back 100%. And I can really feel the change with Fatigue & iron legs starting last week! So it took 6 weeks for that Fatigue to set in (mine began after 3rd session), & it took about 6 weeks to recover from it.... Went for a long walk today... felt good! Hang in there!
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I'm so heartened by all of these "I feel better now" posts! Keep 'em coming!
msbrompton, I'd LOVE to keep all of this in 2015, but I think I may have to wait until the beginning of May--or spring break, in March, at the earliest--for my next surgery, just because of my teaching schedule and my stubborn refusal to allow anyone to take my classes for a week or more. I feel like that will mark some kind of new beginning for me, even more than the last Herceptin in August. . . It's hard to explain, but I have a feeling that y'all will understand.
notdoneyet, are you feeling better?!
I rounded the corner yesterday and feel relatively okay now, just in time for nadir. . . .
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My MO cut me loose even earlier. Since the neuropathy is not getting any better, not getting worse thankfully!, he cut out my last Abraxane today. I got my Herceptin and came home. Next week I get my first big, 3-week dose, of Herceptin along with Perjeta. Then surgery Dec. 10th, and Herceptin only begins Dec. 17th.
Kate, I understand the surgery marking you being done even though we have Herceptin after. It feels like there is this short-term checklist and then the long-term stuff. And for you and me long-term could be longer than even 10-years. I asked about the HER2/Tamoxifen crosstalk and my MO said they have seen the interference in mets, but there are not studies for early stage. He said he will most likely do ovary suppression for me along with Tamox for that reason. If I tolerate it over 3-, 6-, 9-months then we may talk ovary removal, but he does not recommend any permanent decisions in the next year or so.
So I am done with chemo. I do not care one bit about my hair. I just want my tastebuds back!!0 -
Hey all. I got two units of blood yesterday and went from needing a nurse to hold my arm on the way in to almost dancing out the door. I slept last night but kept waking up in a cold sweat. My temperature is normal finally, after a week of 99.9 and the cold sweat feeling is kind of still with me. I am not worried enough to call the nurse triage line but keeping an eye on it. I feel a lot better. Certainly not 100%, in fact it is after noon and I am still in my pajamas so it's still that kind of day. But, I can walk to the kitchen and make myself an omelette (which I did) without feeling like I am going to pass out so that's a huge improvement. Planning to rest over the weekend and hoping I've recovered enough by Monday to get the next treatment.
I don't know exactly what effect the neulasta will have on the nadir for the next round, does anyone know? If it still stays about the same as far as what day it reaches it's lowest point but just doesn't go as drastically low then I kind of know what to expect next time because this time we got a lot of data! Exactly two weeks out was the very bottom, I believe. If we just look at hemoglobin I had 7.2 on Wednesday, 6.8 on Monday (two weeks out) and 7.1 on Wednesday (when I went back in for the transfusion). On the bright side, there is a company party for my husband's work that is scheduled for the two weeks out weekend, and I didn't really want to go, so now I know I can and should politely decline the invitation
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Seriously, right?! Everyone has been telling me that since the beginning ~ when my hair comes back, it might be different color/ texture/ volume.... & then they would asked "how are you feeling?" When I said, "I'm sooo tired! I feel I have lead shoes on!" Everyone went, "YUP!" like no big deal. Now, these are people who had themselves or husband/ kid gone thru chemo, PLUS Radiologist / Cancer Researchers-MD; & they all forgot to tell me about the fatigue. Seriously, these are people in my church choir, whom I see couple times a week... geez thanks, doc.
Oh have I ever mentioned? There are 3 cancer researchers (1 of them is also MD), a Radiologist, & an Internist in my choir... I didn't know what kind of research this couple does before, until the wife asked, "which regiment are you on?" My mind went blank for a second, & then she started listing the different regiments.... So that night, I googled their names. The husband's name came up in research link site about early research of Herceptin & BRCA. Crazy, huh!
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Useful to know about this 6 week thing, superius. You're right, it took about 6 weeks to start to feel exhausted and it will take 6 weeks 'detoxing' to rise out of it again. I flew to Geneva for work earlier this week, what a stupid move (but like you Kate I am a bit stubborn over my work commitments). It's OK, I made it back but picked up a mild chest infection from the plane (you know, the kind you get from being packed like sardines in the back of Economy with a ropey air-con).
So pleased you perked up after the blood Tx, notdoneyet. Musogirl, I guess you dind't really need that last Abraxane...
Herceptin every 3 weeks is a piece of cake compared to the main course.
BIG HUGS to everyone who is still going through the rough bits. It does end, honest.
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Hi just finished 6chemo treatments now it will be heceptin for a year. What to expect as far as side effects. Any in fo appreciated.
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