Weekly Taxol group
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Hi all,
I finished ac/taxol protocol in November, and had bmx in December. Just finished fills and exchange in April. I still watch and follow several threads (obviously this is one of them). I've only made a total of maybe 4 posts the whole time, but in reading here tonite I feel the need to put in a "post- treatment" perspective.
First, I can honestly say I feel FANTASIC! Once se's finally went away (about 4 weeks), I have more energy than I did before cancer. It's weird, but chemo seems to have a cleansing effect, like all your cells get renewed or something. I have a slight lasting tingling in my toes, but only notice it if I think about it. No pain, and it has never affected walking or anything like that.
Hair started growing back during taxol, but brows/lashes hung on until about a week after final infusion. They immediately started filling in after they left, so I was only without them about 2 or 3 weeks.
I lost 25 lbs overall, but have put back on about 7. Seems to be my new weight, as it's been this way since around Christmas.
Now for the mental, or emotional impact--- please remember this is MY experience, and everyone's circumstances are different. When I was diagnosed in June, my life was in chaos. My husband and I were on the brink of divorce, and we had my brother (a drug addict) living with us. Everyone in my life needed me and I was physically, mentally and emotionally drained. I didn't work, but I was always doing something to make someone else's life easier. I rarely wore makeup, and my everyday attire was sweatpants and a tee shirt. Shaved legs? Who has time for that? For ME, the diagnosis was a blessing in that I couldn't be everyone's everything. I was forced to put me first and learn to say 'no'. It was so liberating, and I now only do what I want to do to help others instead of being guilted or obliged. Also, the trivial issues that I thought we so important at the time? I've learned to let them go. I can now let a phone ring and not jump out of the shower to answer it, can have a conversation and not get pulled into someone else's drama, and even excuse myself from situations that will only make me feel bad, all without guilt!
BTW, With my new implants, I'm enjoying wearing summer shirts (bra optional). I wear makeup and my short hair is growing fast. Feeling good is top priority these days! Losing my breasts was horrifying to me, but new and improved isn't so bad😉
Speaking of feeling good, this process is something to look at with pride. We are strong women! Think of all the se's...the aches, GI issues, nausea, loss of taste and eventual swelling and cording for some. But we're doing it! This diagnosis shows us strength we might have never known we possess.
Am I glad I got cancer? Hell NO!!! But in a crazy way, it gave me my life back. For the fist time in many years, I feel in control. The whole process is very cathartic, both physically and emotionally.
It's a scary diagnosis, with many uncertainties. The unknown is always worse than the reality (remember that first treatment, and how much easier it was than what you imagined). The same is true for most of us going forward.
Many of you are worried about your "new normal". Hopefully you can take lessons from what you're going through and make it a "better normal"!
Love, prayers and healing to all of you strong and beautiful women!!!
Vickki
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Vslush—honestly I wish more people who are out the other side would come back and do what you did. It is *so* heartening to read your story. Thank you so much for taking the time to share it with us. Very much a brightener for my day! (I’m off to #2 this morning. Hooray!)
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Vslush,
Thanks for sharing your wisdom! Several women I've spoken to have made similar points -- cancer is life-changing, and a lot of those changes are for the good!
Did my first treatment yesterday. I'm looking forward to the day I can look at it from a similar perspective
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Thanks Vicki. You didn't mention what is the biggest positive for me - I know who my friends are and don't waste time on the ones who aren't!
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For Ingerp and all:
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Ingerp and Mobscene, hope today's treatments go well for you...just keep clicking them off ☺️
Taco, EXACTLY! Well said!!
Vickki
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Sorry Mobscene, I see your treatment was yesterday. Hope you're feeling alright today 😊
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I am good! If I'm allowed to be annoyed at any of this it's definitely the time between when I arrive at the infusion center and when I actually start getting the good stuff. I always get there a little early, then wait to get called back, get set up in a room, they warm my arm to pop the veins, then the blood draw, then wait for labs, then pre-meds, and THEN start the H. I watched it a little more closely this time--I was in the building two hours before the H started. I know it's a "whatcha gonna do" situation, but you get all pumped up to go do this and then you kind of hurry up and wait. It must be *really* tough for people who haven't been allowed to get treated for whatever reasons. That would seriously bum me out.
Egads no ice cream for me but when I stocked up before #1 for some reason I got some little bottles of Coke. That's what I always had growing up when my tummy was feeling bad. My tummy is fine but I'm having one now as a special treat. :-)
And hooray for me--I went to the gym across the street for a little cardio after the infusion. <insert that flexed arm emoji>
P.S. I asked over on the Triple Positive thread--after T when it's only H, did you keep getting the pre-meds?
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Ingerp - that sucks about how they organize it at your facility. I do my bloodwork the day before. If it's good, then I show up at my appointment time and am in the chair getting stuck with an iv within 5-10 minutes (after they do the quick interview checklist to assess my health). If my blood tests the day before are bad then yeah, I do have to repeat them that day. But I just go to the lab about 1.5 h before the treatment and then go for lunch or a walk so I'm not stuck waiting around in the treatment room.
Egads - love the card from Emily Mcdowell! Taxol is not affecting my tastebuds as much as AC did so I'm eating way more stuff! Too much stuff lol!
Taxol 4 went off without a hitch yesterday and I'm feeling good today. Did a 30 min brisk walk with the dogs this morning, vacuumed the entire living area (open floor plans and big hairy dogs means fur everywhere!) and caught up on a bunch of paperwork lying around the house.0 -
moth--I'm really not trying to sound too whiny and I do like my facility. I always show up early (that's on me), and the rest is just how long it takes (probably 45 minutes for pre-meds including saline flushes). Labs come back in 10-20 minutes depending on how busy they are. There are definitely benefits to living in a small-ish town. The nurse told me to make sure to use the call button as soon as the machine started beeping--just cuz I was kind of at one end of the area and they *were* extra busy today, she said because of the three-day weekend (they're closed on Monday so are treating some patients early). There really were no points in my time there that *nothing* was being done. I was pretty adrenalined up for #1 so didn't really pay attention to the clock, but I was calm enough today to see how very long the process (for a relatively quick infusion!) is. I'll shut up now. It's a lovely Friday afternoon. After three busy weekends we have *nothing* on the calendar for this big one, although we are <finally> going to see Avengers tonight.
Happy happy Memorial Day to the Americans out there!!
(Oh and moth--congrats on being 1/3 done with the Taxol!!)
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doing bloods the day before! What a great idea! For my weekly Taxol I spend from 8:30 am to 4:30 pm - a full day! And most of those hours are waiting around. Infusion is 30 minutes for pre-meds and one hour for infusion plus one extra hour post cold capping time. I sit in a private room with no tv and no people watching
I’m so sick of it!Three left!
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Amelia - wow you're there a whole day! We're there for about 2.5-3h. I get good wifi in my center so I bring my ipad and watch netflix. If you don't have wifi, you can now download netflix episodes to watch later offline....
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Ingerp, was unable to get T today cause of liver counts too high. Just had H, no premeds. But like you, I have blood drawn the same day and I have wait awhile in the chair before I get my treatments. So, today seem to take same about of time as normal. I don’t mind, I ate my lunch and read my book.
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Ingerp, the pre meds were stopped after the Taxol. I was greatful as steriods make me gain weight and also caused bloating.
My Taxol ended in February. I'm finally determined to lose the weight I gained. My eyebrows and lashes fell out a week or two after Taxol. My brows came back in really full and dark, my lashes came back too however they are not as long as before. My hair is slowly gowing back.
My daily headaches have finally stopped. Hang in there, all of this will be worth it (right, lol)
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Vlush - I just finished today my 30 treatment radiation protocol. I can hardly believe that I am at the end of this almost year long journey. It certainly does feel liberating. I think one of the main reasons I am as healthy and upbeat as I am is because I've had a superior support in my husband. He has been a rock. I wish each and everyone of you had someone like him to support you. And he is the love of my life on top of it all! I am truly blessed. It seems almost surreal to think that there will not be any more doctor appointments or treatments to attend to and that I can have a free life to do what I want rather than what I have to do. I know that all of you will eventually come to the end of the journey through cancer treatment and feel the same liberation. I wish all of you well and thank you for all of the good ideas and hopeful inspiration that I have gleaned from this community. I will keep in touch. Much love.
Gussy
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Gussy, congratulations on finishing everything! My best wishes for you and your DH.
Vickki, thanks for sharing. I was told once that most bc patients were found to be too selfless. And that's why they get it. "You must have loved your children /family more than yourself and that has caused a bad impact on your health" I found the statement too presumptive and chose not to believe.
What about the others? Were you being too selfless all these while and do you think that's why the ca?
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Thanks to all for the responses. I really don't mind the routine at my place—just settling in to what will be my routine the next 10 weeks. I was there from about 9:30 to 1:00 yesterday and my place has great WiFi and TVs in every room, plus I get to order a free lunch and they often have a masseuse walking around if you're interested. All in all not bad!!
Saw—sorry about the no T. Will they just skip this one or add another on? I'd be a little sad to have this drag on much longer than I'm planning.
Phoenix I started using something called Lilash last fall—pricey in salons but available on eBay. It takes 6-8 weeks to work but my sister actually asked me what I was doing to my eyelashes.
RAY RAH GUSSY!!! That must be an *incredible* feeling!!!
To those who didn't do anything like A/C but just T/H—I'm curious when you lost your hair. I'm prepared for it but am wondering about the timing. Next week I go from #3 straight to my 40-year college reunion. Two weeks after that I go to a big pig roast that a bunch of friends have been having for 33 years—I only see most of them once a year. Wondering when I'll need to bring out the scarves/hats/ball caps. (And I told hubs the other day that as soon as we buzz me I want to have a couple of close friends over for dinner to start normalizing my new look.)
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Ingerp - Between #3 and #4 mine started to thin badly, every time I combed it, strands were coming out. I decided to buzz it off at that point, I couldn't style it anymore. I also invested in a good quality wig that I wore out. Most of my friends and even my mother never knew it was a wig. I had gone in and picked one out that closely matched my color and style. When I decided to buzz it, went it and she trimmed it to fit. Important to pick out before you lose your hair, easier to match color and they can see how you currently style. After finishing taxol it slowly started to grow, fuzzy thin strands, the top was slow to catch up. I wore the wig out for another 6 months. My stylist trimmed my hair to even it up every couple of months. I think it was 7 months post taxol I started to go out without wig, it was a short pixie cut, but it was mine. I routinely colored my hair prior to BC, so what new stuff I had was all gray. I had it colored 2 months ago, wasn't ready for that grey look. I am not much for hats, but I did buy one scarf as our winters are very cold, to keep my head warm.
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Congrats Gussy!!! Just in time to enjoy the summer 😊
Hariry, I've heard that too. It makes sense, as stress causes oxidation and other biological processes that can alter cells. Hopefully some of the research is exploring that. I don't know that stress caused my cancer, but the diagnosis eventually gave me a better quality of life. My husband and I immediately realized that big things could be fixed, and little things didn't matter. We moved my brother out and focused on my treatment and "us". As Gussy pointed out, support is crucial. Don't be afraid to say "no", and always ask for what you need. Those that truly care for you will get it.
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Vslush - I have heard that extreme stress can have a bad effect on existing health conditions and perhaps allow some to come about. I have not read anywhere that it is a cause of bc but there may be some literature out there that I'm unaware of. And the extreme stress can be there when you don't even realize it. My diagnosis came not quite a year after my first husband died of Parkinson's disease who we had kept at home as he wished. Being a long term caregiver, even with some help, is exhausting and sad but not until it's over do you realize what amount of stress was actually there. In my case it was a lot, but at the time you just do what you have to do without thinking about what's happening inside of you as what is happening to the cared for is so much worse - a thousand times worse. My daughter is convinced that the stress I had during that time is what brought on my bc. I'm not so sure. My breasts are dense and the surgeon believes that it had been there for 10 years and just never seen until it had progressed to a couple of lymph nodes that could be seen on mammogram which was the tip off. I guess the bottom line is that if the stress can be managed whether you have some sort of illness or not is key. And the way one manages is very individual. Whatever works for you is the way to go. Good luck and God speed to the end of your worries.
Gussy
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Inger - your question sent me back to my photo album. By three weeks I had had my hair buzzed and my husband shaved it completely off two weeks later. That seems to be pretty common for us T/H ladies. (many who have something before the Taxol actually say the hair starts to come back on the taxol). So... iffy for the reunion. Pretty definitely the baseball cap for the pig roast. As someone else suggested, if you are going to get a wig, I suggest you do it now so you can match your color and style. Most insurance policies will cover at least one.
I had a wig of my own from an earlier illness and several from a friend but never got comfortable in them. The one I liked the best, DH didn't seem to and they were hot. I was always comfortable with the hats and scarves but I was pretty open about my diagnosis too. I actually liked my bald head better than the "growing back" stage which seemed to go on forever. Last Taxol was the end of March and I didn't go "uncovered" in public until Sept. (and we were on vacation then so I wasn't seeing anyone I knew) although I always did at home.
A good place to buy hats and scarves is your local thrift shop. I had some from my friend Anne, but I think I only bought one other in a department store (with shamrocks for a St. Patrick's Day Party).
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Taco--thanks very much for digging that info up. (Although I swear now every time I read about hair my scalp tingles--yikes!) It really does help to have a rough timeline in mind, particularly the growing back part. I don't see myself in a wig. I did order a few scarves from eBay, and my husband works with a woman who is a BC survivor--she sent me a bag full of cute hats/scarves. I'm thinking it might finally be time for baseball caps for this old gal (not sure I've ever worn one!). Maybe we can cross our fingers not too much happens in the next week--I have reunion events later the day of #3 and the day after that--I'm prepared for not making it as long as the Pig Roast.
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Ingerp - I tried the wig thing (was bald thru an Ontario hot & muggy summer) and it wasn't for me. I tried on 4 billion wigs and every last one made me look a little deranged. I finally settled on one that only made me look a tad manic and wore it exactly once. Hot, sweaty itchy. What worked perfectly was a bangs piece. I donned a fishnet wig cap, attached the piece, threw on a hat or scarf and bingo! I looked exactly like Angelina Joulie...hang on a sec will ya? *leans out from laptop and shouts to DH* “Honey, be a lamb and bring me my anti-psychotic meds, I forgot to take them!" Ok, I'm back. Yeah, so you might want to check out hair pieces for special occasions, otherwise rock out whatever makes you happy...chemo can't stealyour beauty.Nope, never!
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egads007 - your post just made my day!!!!
So needed to read some humor
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Egads just tell me you don’t have as many kids as Angelina.
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No, Ingerp, i said I was psychotic/manic/deranged, not stupid LOL!!!
Amelia- glad you got a chuckle. So important through all this stuff
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Fair point, Egads. . .
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.....then again Ingerp, when I look back over the years, perhaps I should question the concept of stupid ...think I come out birads 5!
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