Chemo starting December 2018
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Hi Flower - this happens to me a lot. I usually do a quick "swerve" and then fold my hands and offer a "namaste" before explaining. My explanation varies from "I have a compromised immune system do to the chemotherapy i'm on" to "I've got a "thing" so not hugging or shaking hands today."
I feel a bit awkward about it, but it beats the alternative. I consider it practice in assertiveness that I'll need to self advocate.
My biggest issue is prior to this whole adventure I was the farthest thing imaginable from a germaphobe. I was a strong advocate of the "5 second rule", would blissfully share drinks, hug friends, clasp hands, and kiss babies. My DH, a natural germaphobe, is in second heaven as I've had to convert to his world view.
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Christine,
My oncologist also prescribed lorazepam as part of the anti-nausea protocol, as well as to help me sleep. I don't find it a silver bullet for nausea, but it does quiet my brain when it's pumped full of steroids post-chemo. But it can be habit forming, so I treat it with respect.
In any event, it seems like part of the standard tool-kit to treat chemo SEs so your pharmacist is off base.
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HAIR!! My husband pointed out to me that my hair is starting to grow back!! I thought he was kidding but sure enough it's a little fuzzy up there... I could feel it. When I looked in the mirror real close I can see the front (crown and sides) has a nice white fuzzy appearance!! Feels neat like peach fuzz. I'm surprised that it's all white 8( I was really hoping the salt and pepper thing I had before would be what I'd get back...oh well hair is hair!!
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Hello ladies,
The 3rd round side effects were similar to round 2; however, I can really feel the chemo adding up. It's taken me much longer to recover this time around. I'm finding it hard to shake off feeling fatigued and drained. Nausea, like a friend who promises to visit, was not so much present the first 2 rounds, then suddenly on round 3 out of nowhere, she's here visiting for days in a row. Bringing along a throbbing headache, bone pain and lack of appetite.
I'm not really complaining since these are rather mild side effects. I know you ladies have gone through worse. So, I'll take it on the chin and hopefully will bounce back in day or so.
@Becky, you are so right about Velcro head. If that were my super hero power, I would be slaying it right now! It is a fight to even put on a beanie hat. The struggle is real.
@Nanette, great that you're starting to see some hair regrowth! Even if it's baby hair. We all have to begin somewhere.
@kber, I'm with you on the lorazepam! Wish my doc would prescribe me a few.
Regarding salutations, I'm too friendly to my own detriment. I hug, shake hands, and kiss everyone I see. No wonder I'm feeling so sick. I blame the Velcro head. It's like a magnet, I'm drawn to everything and everyone!
Hope everyone is doing ok this week. Keep up the good fight!
xx
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Lillian, I am alsodoing TC, aside from steroids, I always have Benadryl on my pre infusion med. it’s hard to go against doctor’s order but you only have one left, is it too late to get a second opinion?
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I dodged some side effects until my last round to AC. After AC#4, I have had more nausea, less appetite, and now mouth sores (because eating wasn't already hard enough!)
Any tips for dealing with mouth sores you've tried?
I've struggled with nausea since the beginning and am down about 10 lbs over the last 8 weeks. Not terrible (heck - if I were in weight watchers they'd be thrilled!) and I have some, um, cushion, but not ideal. They have prescribed a medicine cabinet's worth of anti-nausea drugs, plus the 2 I got during my infusions and they help me keep food down, but because some are steroids they make it hard to sleep, so it's a balancing act.
I start taxol this week, which is rumored to be easier?
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Sorry to hear of the mouth sores, Kber, I've been lucky so far so don't have any advice. Also have no reference for taxol. Good luck!
For me this week the two most annoying issues have been 1 - my face is leaking and 2 - my fingernails hurt.
My nose is running nonstop and my eyes watering nearly as much. Saw my MO this morning and asked if there was anything I could take for these; nope. It's a SE of taxotere he said. Grrr, when it's -13 outside having your nose run and tears run down your face is adding insult to injury. Plus, everyone thinks I'm upset/crying and I have to say, no, it's just my face leaking.
The fingernail thing is also, apparently, a fun SE of taxotere. Could be worse, I keep telling myself, but these are such a constant, though minor, pain that it's draining. And my nose is raw!
A week from tomorrow is my last chemo. I'm worried about the cumulative effect of it all making this one a real bad drag. But the upside, it's the last one. I can do this!!!!!
Hope you all kept safe and warm during this Arctic blast!
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BeckyJL I can totally understand the nonstop nose and the finger nail stuff. My nose hurts so badly at times I don't want to breathe through it and end up mouth breathing. Imsitting here at chemo and my right eye is leaking so badly it's like a small river!
My finger nails feel weird today and I'm praying I'll keep them. It's hard to describe how they feel....
Congrats on being almost one more TX must seem like a dream to you!
Try to stay warm may the artic freeze just go away.....
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This is not a SE. It is a side benefit. I have had a wart on one of my fingers for YEARS. It is going away.
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Nanette - it is soooo hard to describe the fingernail thing. I've described it as if I had lightly smashed them with a hammer and how afterwards they are sore and feel slightly swollen. I've had it for probably 2 weeks now. My NP last week told me to cut them as short as possible. She said one patient wore bandaids around them to keep them from falling off. Mine don't feel like they're going to fall off so I did not take the bandaid route. But they are very, very short and I lotion, lotion, lotion. (Not sure if that makes any difference, but my hands are dry anyway so . . .)
MC - always look for that silver lining, right!
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Mary..Way to go that is a plus!!
Becky I really don't want to cut my nails short as my nails are actually LONGER and stronger on tx than other winters. They just keep on growing along. I will consider cutting them back if the weird feelings get worse. Your description about nails it.. all my finger tips and toes are reddish and swollen. Hoping the decadron in my pre-tx today will help.... .
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Hi Becky / Nanette - I was told that the watery eyes and nose are a result of dryness (counter intuitive, but stick with me). The chemo dries out your eyes, nose and mouth. Your body compensates by tearing and running. If you moisturize with natural tears (eyes) and saline mist (nose), you can actually cut down on the constant leaks. I tried it and it worked for me, fwiw.
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thanks kber I'll get some tomorrow... also here in Florida its major allergy season with pine tree pollen coloring everything green. Things don't normally do this in the End of Feb to beggining of March. But even on antihistamines my nose still runs like river.
Here at TX I did get a chance talk to my onco nurse. She said I'm fine and yes it is taxol
I've found that Aquaphor or vaseline applied with a Qtip really does help the nose too!
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Just searching watery eyes and found your comment, thank you very much, that is something to try! I appreciate all the helpful friends on this website, thank you! Hugs, Lisa
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Good eveming everyone. Well #8 went well and I found out that getting up and taking my pole buddy to the ladies room helped clear some of the fog that was settling in. It also helped me to stay awake.
I talked with my nurse and she thinks I just have bad case of allergies she doesn't think it's the taxol or herceptin. I mentioned my tongue and how it originally started put feeling like I'd burned it but ice pops are helping. As for the numb lips I have she's clueless but did say someone else mentioned it to her in the past week. She couldn't remember if man or woman or if they were on taxol. Well at least someone else is experiencing the same thing. Anyhow during TX today I noticed that both of my hands felt numb and tingley and she wants me to tell my MO next week and see if he wants to cut something back she thinks it could be neuropathy starting.
So when they told us the SE's are cumulative they weren't kidding. With 3 more treatment to go the weird SE are raising their ugly heads Hey at least I don't have the runs anymore and that's a relief lol
I hope you all are doing well and haven't lost power in this nasty 💨💨 storm!! Please stay warm.
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Routine bloodwork and appointment with onco nurse w/ MO today. Bloodwork looks the same as last time, but have been feeling really tired and worn down. So much, that I must have really looked depressed. The onco nurse thought that I might want to speak with a psychologist/ therapist to help with this whole process.
Since already looking and feeling very fatigued from last week’s chemo, in addition to runny nose and watery eyes, I must have really looked down and out! After speaking with onco nurse, usually there is a follow up with MO for prescriptions or recommendations, and today MO asked if I wanted to see a psychologist. I didn’t really think I needed an appointment, but said yes, anyway. MO thought it a good idea to have an initial visit and can decide after 1st meeting to see if I would like to continue with the psychologist.
This is such a difficult journey with so much for us to bear mentally and physically that it makes sense to talk with someone on a professional level to help work out the emotional stress that we feel on a day to day basis.
On a different note, anyone else going through 12x weekly taxol? How does it differ from AC or C?
Next week is last AC treatment and then 3 months of taxol. It feels never ending. This is now 5 months since diagnosis in late August. (Already had surgery and radiation). No wonder they recommended seeing a psychologist.
I wonder if it is a different experience having chemotherapy as neojuvant vs. adjuvant therapy. Would love to hear if you have an opinion on chemotherapy before or after surgery.
Wishing everyone well
xx
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Angie I definitely know how you feel. I talked to my psychiatrist on Wednesday and it seemed to help my mood. We talk monthly and it is nice to have someone to dump this chemo stuff on. When I went for treatment yesterday the girls downstairs were worried about me because you described my face. Red swollen eyes and nose... no energy...I feel like I've been through a war. When I left I mentally felt better as I was able to talk with my nurse about how I feel. I see MO next week and I'm to let him know also. She said something about MO cutting back my dosages of T&P for the last 3 weekly infusions.
I'm doing this as neo and at this point couldn't see me doing this after surgery! If I feel like this I can only imagine how much worse I would feel then... mentally trying to recover from MX and then this mess probably would have broken me!
Prayers to you and hope you feel a little better.
~Nanette
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Nanette,
Certainly can see how important it is to talk with a psychologist/ psychiatrist to help navigate the ups and downs during this journey. And I would agree that having AC+T (16 rounds of treatment) or any other chemotherapy regimen after surgery and radiotherapy is exhausting.
I found surgery (breast conserving) with immediate reconstruction (latissimus dorsi flap) physically challenging. There was a bit of pain and limited use of arm/shoulder the first couple of weeks since opting for immediate recon work. Took about 6-8 weeks to have 80% of shoulder mobility. And being an advid competition golfer it was very difficult having to cancel my last championship due to recovery.
Radiotherapy was not so bad, except for the fatigue at the end of treatment. Took nearly 3 weeks to regain normal energy level.
But adjuvant chemotherapy is a whole new level of masochism. Not that anyone derives any pleasure from chemotherapy, just that it is a necessary evil. I've only had 3 rounds, yet I'm already feeling the cumulative effects of it. Can only imagine how it will be further on.
I'm just past the halfway mark through this process; chemotherapy is by far the most difficult climb to reach the mountain top. Had I a choice; I may have elected to do chemo first. But none of this is easy, regardless of where we begin this marathon. Making it to the finish line is where I continue to stay focus.
Let's keep going strong!
xx
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Angie, I'm about to have my fourth treatment with TC on Monday. They are moving me from Taxotere to Taxol because I had some sort of reaction to Taxotere, so I don't know anything about Taxol.
But....If it's any help, I'm also very tired. All the time. Each cycle increased the exhaustion and even here a couple of days before my treatment where before I felt great....today I'm tired and don't feel like leaving the house. Just want to rest. It isn't depression, it's chemo. I'm certain about that. And when chemo stops, energy will increase.
Monday is my last chemo treatment. That sounds great, but I worry whether four cycles is enough, because many of you are doing the AC + 12 weeks of Taxol, or otherwise longer treatment. I was told I only needed four rounds because I was node negative....but that rule doesn't seem like it applies to everyone. I wish my oncologist was more communicative. I think he is knowledgeable, but I haven't even seen him for two months.
It's nice your medical team cares about you Angie. Cancer can be very depressing to people. I do find myself telling people "I'm fine" when they ask, but really, am I fine? No, I don't think I am. Trying to reassure my kids, husband and family so they don't worry....but really I just went through a very difficult fearful experience with diagnosis/surgery, I'm sick with chemo and I'm adjusting to a life that will always be wondering when cancer may come back to me (I had a high recurrence score). Not fine. But not a hot mess falling apart either. I'm looking for a therapist myself. Someone I can talk to about not being fine, without worrying my family.
Hang in there, it gets better.
Lillian
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I too wish our MOs were more talkative
I see my MO this Thursday and I'm going to ask him what's next being as I have 3 more Taxol and Herceptin to go. I know I'll be on sometime for the next 5 years but he never said what.
Lillian, taxol has cumulative side effects and nearing the end I'm tired more and more. I can't vacuum anymore because it leaves me gasping for air. So I have to get DD to do it for me. From what I understand Taxotere and taxol have similar side effects.
Angie yes it is nice to have an ear outside of the house and well meaning friends. I can dump on my shrink and let her get me riled up to get it all out!
Here's to hanging in there the best we can. Yes to others we are "fine" but in here we can really Express how we really are... tired..sore...sore noses and eyes...tension headaches from the stress of what we're going through...and our fears. I know this is one journey that no matter what decision I make it will be the best one regardless.
Hugs to everyone ((((hugs))))
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Lillian...My fourth and last treatment is Tuesday. I was originally on TC but I had an allegic reaction to taxotere so now I have Cytoxan and abraxane. Abraxane is in the same group as taxotere and SE are the same. But dr did say it is a cumulative effect. Tiredness/exhaustion will be the toughest on this fourth round. I feel like I finally have my strength back...at least I have the weekend to enjoy it!! Ironically it was 3 degrees in NJ the other day...on Tuesday it will be almost 60 degrees! (perhaps I should skip threatment and go for a walk on the beach)!
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Thank you Lillian, you've said exactly how I've been feeling! I'm not a total hot mess, nor am I always fine. I too am doing adjuvant chemotherapy due to high risk of recurrence. Wondering the same thoughts, if or when I may be reconfronted with this whole ordeal again. I know it will be healthy for me to talk to a therapist about it all. It's great that you're seeking one as well.
Success on Monday with final round of chemo!
Flower, also wishing you success with your final round on Tuesday!
Will be sending lots of positive energy to everyone who'sfinishing chemotherapy next week! Is there a bell, a gong or something that can mark making it to the finish line? Will be cheering you all from the other side of the ocean!
xx
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Hi everyone,
On a happier note, visited with my fitness trainer yesterday and he's very happy to see how well I'm managing my fitness level under chemotherapy. I am determined to get ready by springtime to play competitively again.
I am so inspired by Bibian Mentel-Spee, a three-fold Winter Paralympics gold-medalist, and five-times world champion para-snowboarding athlete from the Netherlands. Bibian Mentel won the paralympic gold in the snowboard cross discipline in the 2014 and 2018 Paralympic Winter Games, as well as banked slalom in 2018, despite battling cancer nine times since the beginning of the new milliniumand winning her 2018 medals at the age of 45! And am hoping for an opportunity to meet her with my trainer.
Hope you're enjoying your weekend.
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that's amazing Angie!!0 -
Yes, Lillian and Angie, I'm not a mess but I'm not ok either. I'm dealing, that's how I'd put it (as if any of us have a choice to deal with it or not).
Flower, my last and #4 is on Friday, so I'm right behind you. I'm both looking forward to it (because it's the last one!!!!) and dreading it more than any others (because the SEs are starting to pile up). I'm not looking forward to any of the SEs getting worse or adding any new ones on this last round. Here's what I'm afraid of in no particular order:
1. Neulasta pain will be bad, because 3 was worse than 2.
2. My fingernail pain is now also my toenail pain and it's becoming a problem. I don't want to touch/do anything that means contact with my nails. My tennis shoes (very good, comfortable shoes) were hurting the toes on one foot yesterday and it didn't go away when I took them off. If it gets worse, that's a problem.
3. Loosing the rest of my eyelashes. Most of the bottom is gone and the top is getting a little thinner. I tried putting on fake ones a couple of days ago and failed miserably. Haven't tried again since.
4. Fatigue. I'm still more tired than I'm used to being. I'm almost 3 weeks out from the last chemo, but when I took the dog for a walk this morning (weather is actually ok, not subzero) 3 miles at a slow pace almost did me in. I knew it at about 2, but had no choice but to walk on home which brought it to 3. I thought I had more energy, boy was I wrong.
5. MY FACE WON'T STOP LEAKING!!! I've tried the eye drops and the nasal spray and nothing stops the watery eyes and drippy nose. The nose is actually the less annoying one now. The eyes, when they really get going, make it hard to see stuff. People look at me funny, I think they think I'm upset and crying. I AM upset but it's because I'm "crying." Ugh, I really don't want to up the ounces leaking from my face, if that's even possible.
Okay. I'm done ranting.
On Wednesday the college where I work is doing a support cancer research women's and men's basketball games. I feel like I should go because I could be the poster child for the event. We'll see how I feel Wednesday at 5:30.
Angie, she sounds amazing. If you get to meet her, post a pic for us.
Everyone, like Dory in Finding Nemo says, "Just keep swimming." Sometimes, that's all we can do.
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Just keep swimming - Becky I think we should put that on our coat of arms.
If you think going to the game will be fun and enjoyable, you should go. If it's going to be exhausting or uncomfortable, designate a "poster child" to go in your place or just stay home. Right now the person you owe the most to is yourself.
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New topic, have any of you heard of the LIVESTRONG program offered by many YMCA's? Here's my local YMCA's description:
"LIVESTRONG at the YMCA, a small-group program developed and established in partnership with the LIVESTRONG Foundation, assists those who are living with, through, or beyond cancer to strengthen their spirit, mind and body. Recent research from the Yale Cancer Center and Dana-Farber/Harvard Cancer Institute confirmed that LIVESTRONG at the YMCA participants experience improved fitness and quality of life as well as significant decreases in cancer-related fatigue. The program includes: - 12 week program with two 90 minute sessions per week - Cardiovascular conditioning, strength training, balance and flexibility exercises - Facilitated by YMCA certified instructors - Requires intake assessment - Program includes membership in the YMCA "
I've emailed the director for more info because I'm interested. Don't know how anyone on chemo has much energy to to any type of training (Angie you're amazing). But I want to know more. Thought I'd put it out there in case anyone else knew and/or was interested. It looks like it's free, too!
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Becky,
We don't have the LIVESTRONG program over here, but I've read the article on this board breastcancer.com, https://community.breastcancer.org/my-profile/articles/1575471regarding exercise during and after surgery, including radiotherapy/ chemotherapy, and it's shown to help improve overall health and well-being. If the Y offers that program in your area, definitely sign up! I know that I'm handling chemo rather well because I am on a fitness routine similar to LIVESTRONG via my hospital, lead by the cancer rehabilitation team. It's kept my strength and endurance fitness level to nearly what I was before chemotherapy treatments that even the team fitness trainer was impressed with how fit I am while undergoing treatment.
I highly recommend it! Especially if it's at low or no cost. I always feel so much stronger after my sessions. 💪🏼💪🏼
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My local Y does not have the LIVESTRONG program but I have heard wonderful things about it. My doctor gave me the okay to go back to Zumba between treatments. My energy level is not where it was before my diagnosis, but I truly enjoy it, and it does wonders for me mentally!!!!
This is an interesting article...it a couple of years old published by Sloan Kettering...on the benefits of exercise for those diagnosed with early stage breast cancer and protecting your heart.
https://www.mskcc.org/blog/women-early-breast-cancer-can-ward-heart-problems-exercise
Tomorrow is my last treatment..and I was told to expect the SE from nuelasta to be tough. I don't like it, but I keep telling myself that the bone pain is helping my blood count to stay healthy, and therefore allowing me to Zumba!!!
Be well!!!!
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Flower, I don't know if I want you to tell me about the Neulasta pain and if it is worse or the same or just let me find out on my own. No. That's a lie. I want to know, so please post. I'll be thinking of you tomorrow and sending positive vibes and good wishes!!!!!
If you're like me, the bone pain starts to hit 2 days after the nuelasta and peaks on the 4th day after. Like you, I keep telling myself, I can do this. This is the last one. So even if it's bad, it's done. But I'd be happy to send you stupid jokes if it gets bad. I do that for my kids in college when they're having a rough day or so. They tell me it helps.
As for the exercise, I was doing real well up till this last round. Then the fatigue and the sub zero temps ganged up and kept me from getting out and walking. I'm hitting it again this week but am worried about this last round. I'd also be interested in how the fatigue goes for you. I hope you're zumba-ing away with no SEs interferring!!!
I did more research on the Livestrong and think I will definitely give it a go. The idea of getting back some strength and endurance is VERY appealing at this point, isn't it!?!
Be well all.
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