Chemo starting December 2018
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Lillian, Flower, McBaker, I have a new Onco on my last infusion, this time he gave me saline IV few minutes before the actualchemo and I believe simultaneously with the actual chemo but on a very slow drip. I was never given saline before. So it’s going in more diluted and feel easier to my system. It feels better to me and did not make feel as sick like the previous ones.
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Anxious, glad to hear it went better. Weird though, because they have started me with a saline bag well before they start the taxotere each time. I haven't had a reaction. I wonder if this is standard or just depends on you MO. Any way, glad it went better!
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Anxious I'm so happy for you that you're treatment is much better!! Amazing how little changes can make such a difference!!
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Hi! Just got home from treatment number 3...with abraxane replacing taxotere. No allergic reaction!!!!!! Wow..the nurses were watching me like a hawk! I did receive a saline drip before the taxotere and now again before the abraxane.(I believe the saline is used as a flush). The abraxane has same side effects as taxotere...so I am waiting to see what the week will bring!!!
Be well everyone!
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congratulations Flowers!! I'm so happy for you that they found something that worked for you. I can only imagine how scared toy were going today and kudos to you for going!
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congratulations Flowers!! I'm so happy for you that they found something that worked for you. I can only imagine how scared toy were going today and kudos to you for going!
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Hello ladies,
Just want to check in. @Lillian, hope you’re doing much better after such a rough start to round #3. @Anxious, sounds like you’re doing ok with #3 so far! @Flower and @Becky hope #3 is being gentler to you both today.
I’m right behind you ladies. Had bloodwork, and everything looks normal for round 3 on Tuesday. Which I’m bracing for since I’ve heard that it’s the roughest one on us. Fingers crossed that it will be kinder to me as well.
@Kber, welcome to December group. Glad to have you join us. Hope you’re feeling much better through round 3.
@MCBaker, @Nanette, @Marnie, and everyone in December group, hope you’re feeling well and enjoying your week.
I’ve shaven all of my hair off and I must admit, I really love it! At first I felt vulnerable and naked seeing myself completely bald. But the more I looked at myself in the mirror, I see the real me and she is a warrior giving this fight everything she has. I hope that is what all you lovely ladies see in the mirror as well! That we are all warriors with so much inner strength and beauty!
Wishing everyone a happy weekend!
xx
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hi everyone
Hope your all doing well.
Angie welcome to the bald and beautiful club. Energizing isn't it!! My granddaughters aren't here this week so I've been going around with nothing on my bean during the day and its been so freeing! (My 7 year old grand doesn't like my baldness but her 3 year old sister is more accepting)
Does anyone have issues sleeping in a cap/hat? At times I find it most annoying...too hot ...half off half on.... or not on at all and my head is freezing!! I've tried light ones but they're not warm enough and the light skull caps by morning are the ones not on my head or I wake up sweating.
Well the weather here in NE Florida has been so weird this Year!! 1st it's been the wettest one on 25 years. It's also been one of the warmest. After Christmas we broke 2 high temp records! Now the red maples are budding and leafing out and the pine trees and pollinating with their green pollen dust lightly coating anything outside. THIS doesn't normally happen until late February! My allergies are acting up big time!
So I'm on day 2 of week 7 and today's not a bad day. The runs are starting and I was out with DH earlier and am learning chemo brain is in effect. I either can't remember what I was saying or just get lost having a conversation. Funny but sad since we were at his denture fitting appointment and I didn't like how his teeth weren't gapping correctly and all I could say was overbite. Luckily the dentist knew what I was trying to say and said he'd get it fixed by next week
Sigh... I think I can deal with hairloss better than havin word loss.
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I maybe spoke a little too soon, I don’t know if its the crazy weather here in CA this week, we’ve got too much rain this week and very cold. I feel very lazy since yesterday. In woke up today with puffy eyes and mucus in my eyes, seems like I having an eye infection. I also have a red and swollen face which I usually get after infusion. I feel lazy and weak with eye infection....waiting for MO to call me back....
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#3 was uneventful. Didn't sleep through it, but had short naps. Probably my own fault for playing on my computer and not just letting myself go down. I do that sometimes, don't know why. I'm not a good napper, never have been.
Went straight to Ulta (makeup) from chemo. Saw another gap in my lower eyelashes, so I bought some fake ones in case I wake up one morning and find a big gap there too. Never used them, but the Ulta clerk gave me a tutorial. Wish me luck that I don't need them, or luck I can actually remember what she told me to do if I do need them!
Got home, ate lunch, graded some of my online classes' assignments. Emptied the dishwasher, folded some clothes, played some on the computer. Aaaannnnd, I'm wiped out. I don't remember the fatigue hitting until a day or two after chemo. No other problems or SEs so far though. My big worry is always the Neulasta SEs since I had such a horrible 1st round with it. I'm optimistic this will be more like round 2.
I'm back to major velcro head. Doesn't look or feel like any hair is actually growing except maybe microscopically. But everything sticks to my head - hats, scarves, shirts. I even tested running a sock over my head and that too stuck. I don't want to shave it again because I'm kind of curious about what it's going to do! Decent taste came back yesterday, so tonight I'm getting pizza before I lose the ability to taste again.
How'd you do Flower?
Nanette, word loss is the worst. Both my parents had/have dementia/alzheimer's and any type of memory deficit sends me into a panic. I'm pretty much screwed on that count genetically and don't need any help on that front!
Angie - right, it is an amazing transformation - physically and emotionally. So much of our identity is expressed through our hair. When I shaved, it was like removing a part of my identity. Who am I? Who do I want to be? How do I want to be defined? My choice of wig/no wig or hat/no hat/which hat is helping refine how I see myself and who I want to be. Coupled with my massive weight loss this last year, looking at myself in the mirror brings a lot of questions and surprisingly a lot of empowerment. I thought you might be able to relate, or maybe someone else out there does. We are so much more than our appearance, we are strong, smart, loving, witty, generous, imperfect woman. Hear us Roar!
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HI all,
I found you are treated with the same drugs as my mom. I wonder anyone has been taking Fucodian supplement during your chemo? I bought that for my mom to use becuase i heard it has helped people control the side effect of chemo. But i am worry do they have any interaction with the chemo drugs.
Any idea is always help.
Thank you so much and wish you'are all get well soon.
TC
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Today is first day post-chemo (#5). I did laundry, called the clinic to make sure that a nurse was available for a port draw for next week; the other nurse had already called. I called the Cancer Society liaison.Then called a friend to ask if she wanted to discover an antique store she had probably never been to. She said of course. The cancer society lady called back, and gave me the information for ordering a free wig. I then spent half an hour on the phone ordering the wig. They had very few grey wigs left in two of their collections, but they had some nice grey ones left in their collection for "ladies of color". One was slightly marcelled,and so cute!!! Then my friend called back and she barely made it to an appointment she had forgotten. She finally picked me up, and, sure enough she had never been to that store. Then we had a late lunch, went to Wal-mart, I got some headbands and some spray starch for fixing up my haul of doilies (In case you didn't notice, I collect doilies). I finished washing the dishes, Got the doilies washed and hung up in the bathroom. I have a long piece of fabric to iron for a quilting project. Then I misused some lidocaine ointment for my port to numb the pain from my scalp so I could give those nasty hairs a good rubbing and brushing. I am NOT going to shave my head!
Tomorrow should be a day for sleeping. I certainly hope so!
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Good Morning
I haven't post since Dec 15, I had a horrible cycle 1 and I am on cycle 2 day 16. I am on TCHP. What a tough regiment! I have learned a lot thru my adventures on cycle 1 and my MO really prepared me better this cycle with all kinds of drugs if things flare up again. I want to share some of my crappy side effects in case any of you have similar stuff and perhaps my process can help you. I had mouth sores, not just a few but my MO counted 30. I couldn't talk, painful and eating was difficult. I was placed on Acyclovir which worked eventually and I still take it at lower dosage for prevention. Besides biotene and baking soda/salt,I also use a product called Essential Oxygen BR rinse, it is wonderful! I also swish with coconut oil for 20 min every morning. Weird thing is that I was doing all this preventive stuff before I got that crazy amount of sores and still got them . . . So far cycle 2 has been 10x better with no mouth sores.
My other issue was I developed bladder cystitis which lead to a bladder infection. The cystitis was so painful which took me to the ER, the dr described it has the mouth sores transferred to my bladder lining. Morphine and more drugs eventually conquered that battle. I now have medication ready if by bladder issues flare up again.
I also got the common side effects of diarrhea and heart burn ( I also have a perscription of omeprazole) I have lost about 12 pounds from cycle 1 and have had difficulty putting weight back on. I am a small person, weighed 123 when I started chemo. The plus is I finally have my taste back and no furry tongue so I am eating things that I normally would not eat pre cancer and loving it!!! (carbs!) Had my first red meat since Dec 1, meatloaf. It sounded so good and was!
Things I am doing different in Cycle 2 . . I have had 4 acupuncture treatments and I feel that is one of the reasons I am doing so much better this time. I also have connected with the Integrative Medicine Department at my cancer center and have seen a dietitian and will be seeing the integrative oncologist next week. Some of the supplements they have recommended are taking a probiotic (Renew Life for women) 2 times a day, Vitamin C, tumeric, and I put a scoop of collagen peptides in my coffee (can finally feel like a cup) in the morning. As well as a list of foods that they consider "cool" foods that taste good to me.
I also have developed folliculitis on head and some on my face. I am now on an antibotic for those sores. They don't really bother me but annoying. It seems like these sores have traveled from head to toe . . . . .
I have enjoyed reading everyone's posts, will try to be more involved now that I feel so much better. Hopefully as my husband and I call it I won't travel to far down into the black hole in cycle 3 which is next Wednesday! In the meantime wish everyone good luck in their upcoming cycle.
Cheryl
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anybody doing TC x 6 here instead of TC x 4? My new onco is recommending TCx6 for me
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AnxiousLady,
Yep, my MO is also wanting me to do 6 rounds of TC. I have #3 coming up next Friday the 25th. My oncotype score was 38 and tumor was grade 3. How are you doing with your chemo so far?
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Hi!
So far this new abraxane is just making me tired, and the steroids gave me crazy hiccups again...lets see what happens tonight/tomorrow (and what the neulasta does to me this time).
Angie...you have a great attitude about your new hair!!! Its funny...I am used to my new "hairstyle" but sometimes when I am not thinking about it and I touch my head...I am surprised not to feel my head of hair. It will be interesting, in a few months from now, if we will all come back with chemo curls!!
Nanette...Its so interesting-the two different attitudes your granddaughters have to your new look! When I am home, I always have a cap or hat on-I like the feel of it. But I realize at night, I was tossing off my sleep hat in my sleep. I'm more comfortable sleeping with my nude head. But being in new jersey...where the temperature will be 8 degrees on Monday...I will have to go back to my sleep cap!!
Becky...I love your term "Velcro head". And that was so smart getting the lashes...even if you never use it...you are now in control of it!!
cherd..so sorry you have had such a tough time...wishing you an easy #3!!!
Wishing everyone a good week!!
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Christine, thank you for asking, I have the usual red and swollen face right now with some eye irritation. Eye irritation maybe due to allergy too, but I have an antibiotic ointment just Incase it gets worst this weekend. I’m tired of taking Benadryl. My Oncotype is 57, grade 3 too, 2cm, IA. Is it really necessary to do 6 rounds
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I think we get more allergically sensitive because of the chemo. I am tired of steroids and benadryl. Air cleaner, washing sheets weekly cleaning the vacuum, watching for mildew in the bathroom, Sigh. Allergic reactions also predispose people to bacterial infections.
After the numb scrub, I have so little hair, I finally decided to shave the rest of it off. My hairline made me look like some hyperintelligent freak of the future/ My grandmother was an amateur phrenologist.
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I had my 7th Taxol Thursday and 3rd Herceptin. It was also a week that I got to meet with MO. I told him I had been noticing some heart jumps/hiccups for about a week or so. He said he isn't concerned, so In the moment I wasn't either. Friday morning I felt it again so I decided to make a follow up appointment with my primary care doctor. On the phone they freaked out and told me to go to the ER. So I spent the next 4 hours there. After a two minute ekg and blood enzyme tests, they send me home and said they are not concerned. SO on Monday I get to try to get an appointment again with my primary care doctor. Seemed like a big under reaction from MO and a big over reaction from primary care. I think it is perfectly reasonable to think the chemo or pre meds could cause my heart to be more stressed and skip a few beats, but it is frustrating being told it doesn't have anything to do with treatments and is just normal heart contractions that happen to people. Hopefully I can get my primary care doctor to do a middle reaction to my problem and maybe a heart monitor for a week to see whats up. Also finally got the humidifier running in my bedroom. ER doctor said the inside of my nose looked like burnt lasagna. One night using it and I can already tell the difference. Other changes would be my shaking that I could feel inside as the steroids wore off each week has been getting progressively worse.. I am actually having shaking hands and have been dropping things. I broke a little glass trinket holder of my daughters this week.
She wasn't mad, but it makes me frustrated when I can't plug my phone in to charge without a huge effort.I feel such a huge amount of positivity coming from the group in your posts. It helps me when I read them. My normal pre chemo treatments attitude is very cheery. But I am stuck in a big dark depressed hole and can't bring myself to call anyone or myself a warrior or brave or happily bald. I still have big moments of hating pink and feeling like I refuse to be part of the club. 0 -
Oh Marnie, I am so sorry you're having such a hard time. I wish I could be there to just be there with you. I hope you have someone you can talk with, outside of family, if not, feel free to PM me (not that I am any fount of advice, wisdom or knowledge, but I can listen pretty well). Being brave, being a warrior doesn't mean you have to feel that way. You get up, you do what you can and what you must despite feeling strong, despite feeling brave or feeling anything in particular. You do it when you feel like shit, you do it for your daughter, your family and for you. You do what you can. THAT is being a warrior. You do the best you can. That's all any of us can do. Some of us use humor to cope, some of us have other strategies. It doesn't make one better or worse, it's just coping and you're doing that, too. You say pre-chemo is ok, so just hold on. Just get through. I am 100% sure everyone on this board has had their very lows, even if we don't share those. This whole experiece sucks, but we perservere.
And as for pink, not really my color preference either.
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Marnie, often those heart beat irregularities are caused by stress. You describe yourself as being in a big black hole and you have difficulty identifying with the sisterhood. Perhaps some psych meds, prescribed through someone who is familiar with the emotional implications of breast cancer is the answer. I am getting much better sleep with a benzodiazepine and have been on venlafaxine for a couple of centuries. There is no shame to being imperfect and needing help.
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Hi Marnie,
Becky said it so well! What we must endure is so tough on us! Taxol can really mentally beat us down and you’ve already gone through 7 rounds! 💪🏼 You’re Wonder Woman! It’s very human to feel the way you do. There’s only so much that one should have to go through. Lean on us when you need to. Vent as much as you want. We’re all here to support each other through this. And we will get through this!!
Sending you a big hug and lots of good energy your way!
xx
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MarnieMay ~ big, big sunny hug sent from San Diego. All week I've felt awful. I haven't been very positive.
I don't know if this resonates with you, but what makes me feel really bad besides the infection, is that my MO's office didn't really take my infection seriously. At all.
My team took 5 hours to call me back about my infection and then said, "well, keep taking the antibiotic" with very few questions leading up to that "diagnosis." I'm was here at home on my own all week really sick without medical input.
So, my plan at Monday's follow-up is to be a strong advocate for myself and really push them HARD on making sure it doesn't happen again in my last round. Infection is scary and that's important!
I just want to say you are important too. What you're doing is very hard, and the fact you are doing it is amazing. You don't have to be positive about it - no one asks a guy to be positive and smile when he's fighting someone. That's true for ALL of us!
Your MO should have been more helpful to you in answering your questions about your heart. This disease is awful, and one of the worst parts is what it does to people's sense of emotional well being. I'm sorry you feel down. It will get better, but I understand how hard it is to see it when you're sick. Boy do I!
Cheryl, you've had a rough ride too! I would crumble. Glad it's getting better and I do hope that trend continues. Sunny hugs to you too!
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Marnie, these Onco sometimes makes me wonder.... my Onco told me last Friday he’s not comfortable giving me eye meds because it’s not his expertise, he told me to go to my primary doctor. He doesn’t think it was chemo related. I was in the clinic to get a Neupogen shot, he didn’t even see me, he called me on my phone.
Hang in there Marnie, you’re a very strong person like everyone here
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hi ladies good to hear from all of you.
Taxol stinks and I just did week 7 on Thursday and this is the 2nd weekend I have a swollen face!! I don't even look like me I look in mirror and i see this big moon face looking back at me. I also hate this weight you game lose 4 pounds to gain it back next week..getting me down 8( I'm tired of having this breathing thing from the chemo and having to use a nebulizer now for breathing treatments....shortness of breath... bites and takes your energy!!
So DH dragged me out of the house so he could go look at our neighbor ladies car..it's not running. I told him i really don't want to do especially after how sick i just was. I told him it's really made me leary of being around people for fear of getting sick. Well long and behold this womans adult son comes home from work and he's SO SICK! He apologized for coughing and said he'd go back in the house and I said "no honey I'm going home any ways. I have to be careful around others because I'm on chemo and I'm tired today." Omg I thought he was going to pass out. I mean come on I have a chemo cap on.... he said "oh my I'm so sorry I don't want you to get sick from me but there's a sinus infection going around at work..." well his attitude was good. Omg rotavirus now sinus infection coming?? Please NO!! Enough!! I want my immune system back!! I hardly ever got sick!
So this,is day 3 and I'm so tired. I guess I used up all my energy the previous 2 days cleaning. Oh I'm having a hard time with my house and the dirt!! I like my house neat and it's not now ... another reason to hate this chemo!! Yiu think DH or DD would at least vacuum the floor one in a while!
Sorry but I'm just bummed. I know they have told us the effects of taxol are cumulative but omg of I'm this tired what are the next 5 trwatmentsgping to do?? Put me into my bed?
I'm sorry to be such a downer... hopefully tomorrow will be a better day. I hate being down but my glass is still 1/2 full!
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I once worked as a nursing home activity director. During that time, my father had a stroke and died six months later. Patients at the nursing home died, people to whom I had gotten attached. I burned out. Commitment to people who frequently die is very stressful, unless you have a very deep faith. I have a friend who was an ICU nurse for years and years. She seems hard and uncaring, but I know that it is a result of her professional experiences.
I think we need to give oncos a break. Most of us consider ourselves to have a good prognosis, but oncos also deal with some very hard cases. If they need to cut back on personal attention to patients, they need to do so for their own sanity. I have mentioned this to my chemo nurse, and she agrees that the cases where they have to poison people to the brink of death just to give them six more months are rough for medical personnel.
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I’m not asking for extra personal attention from anybody, i just want to know that I’m dealing with experienced professionals that know what they are doing. We all react differently with chemo, they have to monitor our progress so they can make adjustments if necessary or at least give us their professional opinion on what’s happening to our body
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Exactly. And the line can get awfully fuzzy from the perspectives of the different participants. Best to acknowledge their perspective when addressing the issues.
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Hello everyone,
It’s round 3 of AC for me. Sitting in the chair right now and am thinking of you all. Hope everyone is doing okay.
A gentle snowfall in the Netherlands today. There is a nice calmness about it. Just want to wish everyone well this week. Especially if you’re going through treatment.
xx
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As someone who was in your shoes approx 18months ago. Chemo is the hardest without a doubt. It sucks for sure but all of you need to do this. Be gentle and sleep as much as possible.
Hugs.
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