Chemo starting December 2018
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Hey - wanted to get your thoughts:
I just finished AC (4 treatments) and started Taxol + Carboplatin - 12 treatments. My oncologist set me up with a 3 week on, one week off schedule because "most" people do not tolerate 12 weeks in a row and therefore need a break.
Thing is, if I am able to push through and manage 12 weeks in a row, I will finish chemo 3 weeks prior to my son's college graduation and could conceivably fly from NJ to California to see him walk and get his diploma. Not to brag, but he had an outstanding college experience, will graduate with honors, and accomplished a lot in his 4 hears. We didn't get to visit him often, but I really love the school and campus and would like my own opportunity to "say goodbye" to something that I've loved, if only vicariously and from a distance.
But, if I take a break every 3 weeks, I finish 1 week prior to graduation, and I am not sure 1 week is enough recovery time to contemplate a cross country plane ride.
My son's point of view, by the way, is that I should not jeopardize my health to be physically present and I agree. They will live stream the ceremony, so I'll be able to watch from a distance. He told me that since he is going to grad school with the intent of getting his PhD, there will be another opportunity to watch him walk.
But will there? If I really cannot do 12 weeks of chemo in a row for whatever reason, I won't. But, but, but…
There is a statically significant chance that I don't make it through the next 5-6 years it will take for him to get his next degree. While I fully intent to make it, there are factors outside my control. I'm not trying to be morbid, just facing facts.
I'm am going to tell my medical team that I want to at least *try* to get through this round with no (ore fewer) breaks. It's a quality of life thing for me no not miss these important milestones. My thoughts are that if it's a question of discomfort, I want to try to push through. If my blood counts drop, or my liver or kidney tests come back compromised, well, that's a different and unavoidable story.
What do you think? Am I being unreasonably stubborn?
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For the little it's worth, I don't think you're being unreasonable at all. You've thought this out. You're going to adjust if necessary. I don't see the downside to it even if you have to start taking a break part way through, you may have gained an extra week to recuperate before the graduation. And , IMO, having a goal to look forward to, to work through I think might just be that extra something that makes it possible for you.
BUT, do not beat yourself up if it doesn't work out that way. Just know you tried your best. I always worry about the down side so perhaps you're better at managing that.
Good luck and keep us posted.
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Hi Ladies, I started ACy chemo on Jan 3rd. I signed up on the Jan 2019 Chemo board but wanted to ask a quick question here since you are ahead of us (yay!). The AC is making me super nauseous no matter what I do. The effects are now lasting over a week (treatments are every other week). Thankfully, after my 4th treatment on Valentines Day, I will start on Taxol.
Has anyone started Taxol? If so, what have been your side effects. I am hoping and praying that there is not as much nausea. Even if you were nauseous maybe you can fib and say there is none, ha! Last Sunday I felt so sick that I felt like quitting, and I know that's not an option, so I am hoping the Taxol will be less challenging.
Also, someone asked about mouth sores - rinse multiple times per day with a teaspoon of baking soda in a glass of water water. It works wonders.
I hope you are all hanging in there and keeping up the fight. 0 -
Hey - I also had nausea lasting 1+ week on AC. FWIW, I had horrible morning sickness as well, and I was told there is a connection between that and how you might react to chemo. All told, I lost about 12 lbs over 8 weeks. (I did have some cushion in that department, tho.)
Taxol + Carboplatin now and I had some heartburn, but much reduced nausea. Hope you also get some relief!
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Just finished 4th and last AC treatment. It's caught up with me. Round 3 recovery took a little longer. Expecting round 4 to take at least a week as well.
@Kstinedk, I too will begin Taxol after Valentine's. My MO said that Taxol is supposed to be easier with SE, although onco nurse said that SE were different. Not so much nausea, but chance of neuropathy. But I'm sure chemo fatigue may still be about the same. I usually go at least once or 2x a week for an hour exercise routine lead by the hospital physiotherapists to help maintain muscle strength and counter fatigue. It has helped while on AC, hoping that it will help fight against neuropathy while under Taxol.
@kber, I'm in agreement with you on how much it means to watch your son walk graduation. My mother was not able to visit me during my years at university, but I know that witnessesing me graduate was one of her proudest moments. Seems you've put much consideration and thought towards your Taxol schedule. And if you are only able to get an extra week before graduation; still gives you a little more time to recover.
@Becky, following up on whether you did the event at your college. If so, how was it? Photos if you have any.
@Lillian and @Flower, hope SE are not so heavy from treatment earlier this week,
Wishing everyone a mild and easy week.
xx
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kber I agree with what you plan to do and also happy you're open,about taking a,break if needed. I go for taxol 10 tomorrow and thus has been my roughest week so far. No energy at all. Last night DH took me to CVS to get some nyquil for the runny nose and eyes AMD I Finally got some sleep!! The brain fog hasn't been too bad either today. I'm half tempted to ask him if I could have a,week off because IMHO MY QOL hasn't been so good this week.
Kstinekd...I'm on taxol weekly...taxol side effects...let's see in beginning nausea like a morning sickness every morning for 2 weeks...tiredness that gets worse over time... I have slight neuropathy (3 out of 10 scale) in my fingers, lips and feet. Loss of ALL body hair (except I still have some eye brows).. with that comes the never ending runny nose and watery eyes... it's like having hayfever or a bad cold every day for the past 2 weeks and this I'm told hangs around for a while.... bone and joint pain...this varies for me as far as intensity from 4-9 on gabapentin (300 mg 3xs a day) which IS going to change this week! Lack of energy is another...different from being tired... and I have chemo brain and now fully understand my 7 yr old granddaughter whi has add/adhd.... I have concentration issues most of the time. But most of these I'm told will go away over time.
Being clear headed today has been a blessing and I miss being this way.
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Good morning ladies, I finished round 4 out of 6 TC last Tuesday, 2 more to go. So far SE is manageable... occasionally red face, twitching eye, tired, and chemo brain ( I went to Costco yesterday and took me a few minutes to figure out where I parked) but it's a blessing that this round is easier than the third.
I iced my hands and feet every infusions, I haven’t feel tingling or pain except occasional itchiness on my palm and feet. Could this be a pre neuropathy symptoms?
The weather here was very nice yesterday, it was very refreshing to see the sun and to be able to do my morning walk yesterday after few days of rain.
Have a great day everyone!
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Day 4 of 4th and last treatment...this time with Taxol instead of Taxotere. All I can say is.....
BBBBBBBBBBBOOOOOOOONNNNNEEEEE
PPPPPPPPPPPAAAAAAAAAAIIIIIIIIIIINNNN
Ouch!!
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Lillian so sorry you're in such pain... it really stinks!! I hope tomorrow finds your bone pains better
(((Hugs)))
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Lillian, so sorry about the bone pain. Been there, done that. DO NOT WANT A TSHIRT! I hope it subsides quickly for you. If it's still bad today, call the doctor and see if there's anything they can give you. As my MO and NPs said, there is NO reason for you to have to be in pain if it's at all possible to stop it.
So here's a laugh for you all today. This is the coffee cup I pulled for breakfast before going to my LAST chemo this morning.
Just as an FYI, it was a gag gift to my hubby from one of his brothers a couple of years ago! But fitting for me today I thought. Hope it makes you smile!
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Becky, CONGRATULATIONS 🍾🎉 on finishing chemo!!
You look awesome
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Love the mug! 😁 Bald is beautiful! Last round! Hurray 👊🏼
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way to go Becky!! You made it whooohoooo
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Lillian, Congratulations 🎉 on finishing chemo! So sorry you’re in pain right now.
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Hi everyone!
Becky...you look great, love the mug and good luck today!
Lillian...hope you are starting to feel better!
I had my last treatment on Tuesday. Yesterday I really thought I was going to escape that dreaded bone pain, but it hit hard and furious during the night! I will get through it, but its exhausting to think of going through radiation next month! As my bracelet says, "Hope & Courage & Strength".
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quick update - my oncologist was fine with trying to go 12 weeks straight. He will maybe order some extra monitoring and we has a conversation about neuropathy symptoms. I don’t have any yet, but something to look out for.
Biggest takeaway was I felt heard and that my concerns were taken seriously. He trusts me to call uncle if I need to, which is nice. I’m triggered by condescending doctors.
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4th day after round 4 of TC, SE are manageable, no pain just feeling sick and tired with red face but feeling the mental exhaustion. Feels like my body is saturated with poison already, seems like it’s telling me “enough”...no more...I am tired of drinking water...I don’t want to take Benadryl anymore...
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Anxious, I feel the same. For me, it’s been 5 days since round 4 of AC, and I’m still feeling so sick. My face feels swollen and red. Although, I feel like that all over, so maybe not just the face. And to think, I still have another 12 weeks of treatments (up next, Taxol) to go.
Changing topics. I’ve been wanting to try out earrings with this new look. However, I can’t stop seeing myself resembling a pirate. Do I need to go with big hoops? Dangling feathers? Tiny studs? Anyone with photos?
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kber - good! Good luck.
Flower, sorry about the bone pain. That is exactly what I'm dreading. The last treatment yesterday did not go as smoothly as the first three. The IV hurt! and the nurse seemed unconcerned. One of the drugs kind of burned going in, and again she seemed unconcerned. Then the IV continued to hurt so I couldn't do any work because I couldn't even use my right hand to manipulate the mouse. No big deal I thought, the benadryl will hit and I'll have a nice nap. Nope, it was as if there was no bendadryl - no effect this time though the last three knocked. me. out. Then when I got home and took the little cotton ball off where the IV was withdrawn it was soaked with blood. Usually there's only a speck. Had me rather anxious. But today, not bruise, no weird SEs. Still, not how I wanted it to end, but glad I don't have to do it again! Neulasta goes off in a couple of hours. I'm dreading the bone pain which I anticipate will set it in a couple of days. I'm dreading the fatigue which seems to already be setting in today. That is not a good sign. But maybe I'll be pleasantly surprised and none of that will occur. . . . yeah, right.
Tired, but no SEs except constipation. Yes, I'm taking the stuff, no results for 3 days. Ugh. The small indignities we have to deal with along with the larger ones of losing hair, eyelashes, feeling like hell.
Angie, I thought the hoops looked too Pirate like for me (at least large ones). My medium to small ones are ok, but I don't feel like they take up enough space, if you know what I mean. So for Christmas, I got two sets of earrings: a silver and a gold dangle that my daughter picked out. (I don't let DH pick out jewlery, he has weird/poor taste, lol.) They are teardrop or medallion shaped. Not too decorative. Here's a quick pic of the silver ones. (Don't judge me, I'm at home in my comfy clothes and hat trying to get motivated to grade a whole bunch of assignments.)
Ultimately, I think you have to go with a you're comfortable with and that reflects your personality. I didn't wear big hoops before or feathers, but I will wear these even when my hair grows back. I like them. They're just a little longer/bigger than my normal. That's just one perspective. But when you try some out, send pics!
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Becky, the teardrop earrings are lovely! And you're rocking the woolly hats perfectly. I've never been great at wearing earrings, just wanted to feel nearly as “normal" as can be on the good days. Though, I'm not sure I'll be wearing them that often. Still trying to get comfortable in public with going topless.
With or without the turban? Either way, I still get a few stares. Or maybe they are just admiring the look
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Love the earrings and both with and without the turban. Too cold to go topless here! So I'm stuck with the warm hats.
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I wear a variety of earrings with my head coverings... I like caps and scarves but I most wear scarves when I go out. DH took me to the Flea Market last weekend just to get out and he bought me 3 lovely head scarves made of cotton and silk and a beautiful pink butterfly pin.
I had a hard time with the staring... not from little kids but from the adults! One old man stared so hard he actually turned around to watch me...that ticked me off. I thought he was being rude..maybe he didn't know any better sigh. DH says it's because I'm not getting out much during the week. Maybe he's right but I really don't have any place calling me and the mall is 1 hr away for window shopping.
I'm comfortable in my peach fuzzies to walk around the house bare but not outside in the yard. Like my chickens and ducks care lol. Guess I just miss my hair....
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You look amazing either way Angie! I prefer with turban because I cannot stand the stare.
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Nanettefl and others, thanks for the info on Taxol side effects. I will brace myself for more nausea. I can't kick the AC nausea, so maybe I will accept it as a way of life instead of fighting it. Lillian, I hope you find help for the bone pain. I love the earring pics, all!
Wishing you all well!0 -
hi Kstinekd. I had terrible nausea on AC. On Taxol, it’s there, but much reduced. More like a real lack of appetite than intense nausea. Maybe it won’t be so bad for you too.
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Four days out from my last infusion of TC. Not as bad as I feared. Some bone pain from the Neulasta, but about the same as last time. Fatigue is a bit increased, but I'm trying to power through it. Angie you're my inspiration. I figure I won't feel worse if I get some exercise and I might feel better, so I've tried to walk at least a couple of miles every morning. Today, weather hampered us and we only got a mile an a half, but I made up for it by snow blowing the driveway. Yet another day of my college closing for weather, ugh. Fingernails hurt more though. I can't use them for anything, not even to open soda. Appetite and taste dropped out completely. Again, just trying to get through. I'm optimistic in three weeks I'll feel more like me as the last of this poisin works through my system and before I start radiation. Hopefully, this can be encouraging for those of you just behind me. We CAN do this!
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Good morning,
Becky, I’m inspired that you are taking walks outside in freezing winter conditions! And snow blowing the driveway?! You’re putting me to shame. Going to the gym tomorrow to make up for it. I hear you on how heavy the fatigue has gotten with each treatment. But I know, you’ll be back to your normal energy levels in no time. Keep us posted on the LIVESTRONG fitness program at your Y, once you begin.
Anxious and Nanette, I’m learning to let go of mainstream society’s view of what a woman is supposed to like. I haven’t completely gone topless everywhere yet. It’s also still too cold to go outside without a hat. But I am beginning to go topless more so indoors. So far, it’s mostly at the hospital gym where most of the participants are breast cancer survivors, so we don’t mind our baldness. I’ve gone to the regular gym topless, since working out can get quite sweaty. Plus, I treat my self to a hot Finnish sauna afterwards, thus, only a bathing suit is allowed. I’ve gotten a few stares from men (next time, I’ll give them a wink and a smile in return) and some women aren’t sure how to react when they first see me. Teenagers are the best, since they don’t really care all that much about my hair status.
This experience has made me realize that I want to help change the stigma of being a cancer warrior/ survivor. We are so much stronger than most people realize! I will continue to go topless in restaurants, shops, theatres, etc, as often as possible to raise awareness for breast cancer. Our baldness is a badge of honor, it represents our strength and courage while fighting this disease.
I’ve reached out to the Look Good Feel Better organization here in The Netherlands to see how I can be an ambassador to help raise awareness and represent breast cancer survivors. We battle hard and have gone through so much in this journey, that it’s time mainstream society regard us as empowered women!
Fight on ladies!
xx
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@Angie - you are amazing! I love the positivity!
I’ve been following all of the thread, which has been so very helpful. What a lovely supportive and sharing community! I haven’t felt quite up to posting for a while. Congrats to everyone that has had or is coming up on final chemo! I hope your side effects are tolerable and the pain is subsiding. And all the hats and earrings look divine.
My final TC is tomorrow and the dread is really setting in. I’m feeling pretty good, all things considered, minus some fatigue, which makes it even harder to voluntarily walk into an infusion and “make myself sick” again. I know that’s not the healthiest mindset, so I’m trying to change the record in my head. Mental health has been a big thing for me, and my Dr put me on Lexapro last round, and we have found a really great family therapist that is specifically for cancer patients and their families. It was supposed to be to help my kiddo with some of the anxiety, but it’s been helpful to me, as well, as I meet with her separately to debrief. Unfortunately Lexapro has negative interactions with hormone therapy, so I’ll need to taper off in about a month, but we will cross that bridge when we get there.
My main coping strategy has been riding my bike (reminding myself that exercise fights fatigue) and distraction, which includes tv, reading, and now we’ve got a post-chemo, pre-radiation trip on the books, so I have something to look forward to and plan. And I’ve been leaning into all the free cancer services at my hospital. Tonight is a drum circle for healing, which is not something that I would have done before, but why not? It can’t hurt, right?
Question for you all... my MO said normal recovery time is 6 weeks between last chemo and radiation. It surprised me that it was so long. (But hey, I’m new to all this, so what do I know?) Those of you that move on to radiation next, is that consistent with what you are hearing from your MO? I guess it makes sense to build up proper strength again, but just curious.
Thanks for the continued positivity! It really helps to hear how everyone in our cohort is coping, and to know we are not alone in the fight.
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Hi everyone,
Angie you look great with and without the hat. Love the wooly hat Becky. I find myself going without hats more and more. It's more comfortable.
This is me in the chemo chair waiting for my last treatment. I like this picture because it shows how tired I was before it even started, but still smiling and determined to finish. I didn't know how taxol was going to affect me....but I kept saying to myself to prepare: “you can bring me whatever poison you got, but I'm going to win in the end."
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