Starting Chemo May 2020
Comments
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Judy--Technology is amazing! I'm grateful for the chance to Facetime with them everyday. It keeps me sane
. I am glad your infusion went well today. You are so brave and calm with everything you are facing in the coming year! Great idea to start another thread about the Herceptin biosimilars and interesting to see the influx of new products after the patent expiration. I hope you continue to feel okay over the next few days!Paula--I think I am leaning away from the cold-capping and just accepting the hair loss. After researching the topic thread and learning about the hair care regimen involved, I'm concerned about how I will handle the process. I hate having oily hair! The five days without showering after the surgery were hell for me...lol. I have very long wavy hair that tangles easily and I really need to wash it every couple days or I feel gross. Not being able to wash it regularly and using coconut oil on it to keep it from matting sounds terribly messy to me. Not sure I would cope well. So, last night I ordered some nice pre-tied scarves and beanies and I now am trying to figure out how to get my hair cut before it falls out. If I am going to lose it, I want to have some control over it
. Maybe if I cut it shorter first, it will be less traumatic. I hope your rash is getting better! I took Colace after my surgery and didn't have any trouble, but everyone is different. Hopefully you can sort out the cause and resolve it.
Best wishes everyone!
Cheers,
Sabrina
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Sabrina - "Brave and calm" -- not so much. It does look like I've had a little longer than some to try wrapping my mind around this -- nearly 3 months now since diagnosis. So, maybe that's part of it. But there is still a lot of fear, panic, and crying. Truly, we are ALL having to be so brave--more brave than we ever could have imagined just a few weeks or months ago. I'm so grateful for this group and the support we're all able to bring to one another.
For hair, this video was really helpful to me: https://hatsscarvesandmore.com/blogs/news/chemothe.... I think I'm just going to wait for it to start coming out and then will buzz it down. Can't think of a good way for my hubs to give this mop a haircut that wouldn't look like a 3-year-old taking scissors to a doll. During chemo today, I just spent some time thanking my hair for being my companion and providing so much character for 50+ years, and promising we'd reunite soon.
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Hi,
I posted a long welcome and symptom update yesterday but it didn't post and I just didn't have the energy to redo it. Please know that I welcome you both Cali_aargh and roxiegirl LOL.
I did want to say that, as expected, I did feel the worst on Day 3. Bone pain, fuzzy brain and some mild neuropathy. Yesterday was better, today was better still. I keep thinking I feel my hair falling out ☹️. And yeah. I keep picturing how I will look without it. I actually wore my wig for a few hours today just to see how it felt. I think wearing just a wig cap kinda helps me picture it too.
Also I don't think I've mentioned it before, you ladies might check into Look Good, Feel Better. https://lookgoodfeelbetter.org/virtual-workshops/ They offer virtual workshops for wigs & scarf tying and makeup application for cancer patients. It's all free, you can do it as many times as you want. I've done both workshops and it was very helpful!
Thanks
Angela0 -
Angela--that happened to me last week too! Very frustrating! Sorry you had some rough symptoms but I hope you continue to feel better each day
. Thanks for sharing the info on Look Good, Feel Better! One possible silver lining just occurred to me in the shower a few minutes ago.... I assume I'll also lose the facial hair I hate so much and have much less "mustache management" right? LOL No bikini waxing this summer? Trying to find the positives! 
Judy-- I agree, we are all pretty amazing. This is not a fun journey and we are all brave! Thanks for sharing that link. It was very helpful indeed.
Cheers,
Sabrina
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Hi everyone,
Sabrina, I also decided against cold capping as I just felt like it was a lot for me to manage on my own with uncertain results although I’ve seen lots of people who have had very good results. As predicted on my chemo regimen, today is day 14 and if I run my hands through my hair it is totally coming out! I can say too that as some people have said, my head also feels a little sore or tingly. I’m hoping no to cut it until the end of the work week - have a few Zoom meetings between now and then but we’ll see. My husband has been super supportive in reminding me it’s temporary and telling me he thinks I’ll look good. Have never had short hair so it’ll be interesting! That said I can see the merits of no hassle and cool for the summer!
I need to try one of those Look Good Feel Good workshops. I don’t generally where makeup (and it’s not like I have anywhere to go right now!) but a little bit seems to go a long way when you’re dealing with hair loss which is such a big part of our identities.
UnrealTarHeel - there’s no question my hair is going to look like my kids cut it! It’s super straight so if I buzz it down to an inch or so it’s going to stick straight up I’m sure but presumably it will promptly fall out.
My 2nd infusion is a week from today so I’m curious to see how I do with that - hopefully we’ll and I think it will be better with perspective on how many days I might feel a bit crummy for but also what I can do to alleviate that
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Hi Ladies! Hope everyone is doing well on this bright, sunny day! I finally got my chemo start date and my first infusion of the TC will be on Tuesday, May 26th. In trying to prepare, I'm putting my shopping list together and would welcome some input. I've already started working on the food items and I've checked other threads for things to have on hand in my medicine cabinet like saline nose spray, eye drops, soft bristle toothbrush, anti-diarrhea meds, etc. My slipper socks with ice packs, new coloring books, and colored pencils arrived a couple days ago. What have you all taken with you on your infusion days .... healthy snack and something to drink? Blanket? Laptop? Since I'll be going on my own, I don't really want to tote around a bunch of things I'll never use or need or things that might be provided by the infusion center. I'd love to hear your experiences. Jelloelloello had some great tips earlier in this thread, but I thought I'd ask for your thoughts
. Cheers,
Sabrina
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Sabrina- That is really great to hear. Before you know it, this will be in the rear view.
I believe the infusion centers have blankets. At least mine did. As per an earlier recommendation, I brought lots and lots of water and tried to down as much as I could while I was there along with all of my iced gloves and booties - 2 pairs to change mid-way. It was a lot to carry by myself. Of course, I brought work, but I was so focused on what was happening around me, I ended up doing nothing. Because I was drinking a lot of water, I spent some of the time figuring out how I would unplug and carry bags to the bathroom-twice.
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Sabrina -- I've been using the Cryomax pads, rather than booties, and they are kind of heavy. A friend loaned me a small rolling cooler, which has been perfect, since I am wrangling everything myself. Then I take a tote bag with water, snacks, Clorox wipes (because I'm a little neurotic about wiping down seats and armrests in the waiting room, and even in the infusion room!). Mostly, I listen to music and my meditation apps on my phone -- so phone, charger, ear buds. Truly, I have been trying to take as little with me as possible, and to make sure that whatever I do take can be wiped down, thrown out, or tossed in the laundry. It helps that Taxol is only 1 hour and the Herceptin going forward is only 30 minutes, so I realize I'm there for a much shorter time than many people. Oh -- Cloth mask to get to the hospital (they give you a surgical mask when you arrive) and thin rubber gloves so I can press all of the elevator buttons. (I always forget to put on another pair on the way out, though.) And a big plastic bag to put all of the used stuff in, then back into the cooler for transport home.
I pulled out an old pair of tennies as "hospital shoes" and leave them in the garage when I get back. I leave a robe in the laundry room and head straight there when I get home -- toss all of the clothes straight in the wash and head up to shower myself. My hubs spreads out all of the stuff from the tote bag (ice packs, etc.) on the back porch for a few days to breathe and decontaminate. Then it's time to freeze stuff and start all over again. Stupid pandemic.
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Welcome to the group Cali_aargh and roxiegirl!
- I am 5/6 days post my first TC infusion and wanted to check in with everyone. Side effects have been pretty minimal up until last night. My bone pain started to become more consistent, mostly in areas where I have had pain in the past such as my knees and lower back. I am still taking the claratin once a day and an aleve every 12 hours to help with that and I will continue for probably a couple more days. I had some constipation the first 2 days but that cleared up right away after two days of stool softeners. I thought I would escape without any nausea but today I have found myself running to the bathroom after every meal and having some nausea. I decided to start taking the zofran again and that seems to be helping a bit. Hopefully tomorrow I will wake up and the tummy issues will be better. Oh and the back of my throat is sore and my tongue is white so I keep using biotene after each meal, which seems to help. UPDATE: I guess the white tongue is not normal, it is thrush. My doctor has sent over a prescription for Nystatin. I will let everyone know how well it works. can still taste food though!
I am drinking tons of water and Gatorade and going for a walk everyday. I think if you stay on top of your meds and stay hydrated it really keeps the side effects to a minimum.I also used the cryomax pads 6x6 and wrapped them around my feet and then stretched a fuzzy sock over as far as it could go. They stayed frozen the whole hour and 15 min but at times were extremely cold! They come with a little pouch that has a nice velcro strap to wrap around your foot. I may try this method on my fingernails next time as well.
I think roxiegirl and Julie are up next. Good luck to you both.
-Christie
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Christie, thanks for the best wishes. I appreciate and am learning from you and others telling us what you;re experiencing, and it surprises me that claritin helps with bone pain.
UnRealTar-what an ordeal having to change and wash down to your shoes when you come in the door, we are living in such strange times..'stupid pandemic' is right.
I'm starting tomorrow afternoon but almost had a change in plans. I am currently going to the cancer hospital 45 minutes away and this week (I know, so last minute!) started considering going to the cancer centre in the hospital in town for the chemo. At first they said I would be delayed if I did that because I would have to start the process all over again with the local hospital in getting in with a new oncologist and having them do their own assessment. I fear delaying the chemo too long with how quick my recurrence was so did not cancel tomorrow. However the team has let me know they are going to try to make it work with the local hospital going forward. I didn't want to do this before because they have seen me through alot already and I have the highest regard for the current team I'm with. My mom was the one who pointed out to me that by the end of chemo that drive may feel like an eternity if I feel crappy.
Haven't decided what food I would want to bring to a chemo session? The first 4 are 90 minutes so I can't imagine I'll be that hungry. The cancer centre said they have ice packs I can use for my hands and feet so I'll just go with that.
Julie
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Hi Julie,
I am so sorry you are dealing with a recurrence and so soon as you mentioned. I see you're 45; I'm also young, 39. I hope you don't mind my asking but how did you find your recurrence? I'm curious how they effectively monitor people post treatment. I also have silicone implant reconstruction.
I trust your session tomorrow will go smoothly. It's a lot to weight in terms of what team to use but depending on how many sessions you need I can understand why doing something closer to home would be appealing and supportive. That said, for what it's worth (and I'm on a different chemo regimen so who knows), I felt fine after my first cycle -- it was 2 days later that I didn't feel so great for a number of days.
All the best!
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Julie - Good luck tomorrow!! Will be thinking about you. It’s tough making those hospital/doctor decisions. I’m still grappling with it. I found that once the decision is made, you’ll feel better moving forward. You can still always seek another opinion during treatment. It sounds like you have a wonderful and dedicated team.
Judy- 2nd infusion today. Nurse administering drugs today thought the rash may be from herceptin. She’s seen some of this. She said it should go away. She said our bodies have been shocked with so many changes and each will react differently. The oncology nurse thinks it may from the chemo. I have an appointment to have it checked on Tuesday. I am leaning toward the opinion of the nurse administering drugs since she’s in the middle of symptom checking each week and sees it all. Who knows. Just need to get through these 12 weeks without interruption. However, it is quite a PITA-literally!
Happy Memorial Day weekend for all of our brave, beautiful, wonderful, supportive May 2020 group! I am grateful to have this group to turn to. It’s especially important now more than ever due to COVID where many of the hospital support offices are closed and cannot get readily receive information so a big THANK YOU
Paula0 -
Good luck today Julie - thinking of you and hoping it all goes well. 💪🤞
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Good luck, Julie. May all go just as well as it can for you today.
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Good luck today Julie! I don't think you will need any food, and they do usually offer you something to drink.
I had my first TC yesterday and it feels good to be started. I did not ice, but plan to take some for next time. I took so much stuff like books, ipad etc, but the time passes so fast. No big side effects yet, but I have been keeping up with the nausea medicine.
I also had my tissue expanders filled for the first time, which feels so much better. They actually feel soft, rather than like rocks.
Have a good Memorial weekend!
Sue
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Hi everyone.
My bob was driving me crazy and I just wanted get it over with. I think on the Zoom meetings you won't even be able to tell, especially if I'm wearing my big Bose headphones. My daughter told me I look like the badass that I am, and that I “totally look like Charlize Theron in Mad Max”. I cried a little but I feel better now. I feel so free not having to worry about it anymore! I still have a bit of my allergic reaction going on and some neuropathy but feel mostly okay (it’sDay 8). I wish I could find the motivation to walk. I am drinking lots of water though.
Hope everything went well for you today, Julie!Angela
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Angela, you look great!
I did the same thing this morning although may not be brave enough yet to post a photo here. While I was dreading cutting my hair a little bit, it actually feels kind of freeing. Certainly cooler on this 80 degree day and no hassle after showering! My husband kindly said it suits me and my kids thought it was funny and seem to be readily adjusting.
Heading into 2nd chemo this Thursday and looking forward to being halfway through. My MO may not give me Neulasta depending on my counts which could be interesting in terms of comparing the 1st and 2nd cycle.
Hope everyone is hanging in and doing well
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Fantastic, Angela! You look awesome and tough. Listen to your daughter! I'm waiting for mine to start falling out before buzzing -- and I can only hope to look a fraction as fierce as you do. Fight on, warrior mama.
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You look great Angela! Badass for sure. I love your big smile
. Glad you are feeling okay!I hope everything went well for you Julie and Sue! Enjoy the long weekend everyone and Happy Memorial Day!
Cheers,
Sabrina
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Angela - you look fantastic! Thanks for posting picture.
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Hi all,
Angela, you look great! You are inspiring to the rest of us.
I am a cold capper, but my hair is falling out anyway. I emailed my cold cap person and she says the cold cap really just prevents follicle damage long term, so your hair grows back better. I feel like there was some false advertising here.
XO
Suzy
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One down, three to go! Today went fairly well. I forgot my laptop because my cab showed up early and kept rushing me, but I wouldn't have used it anyway. I face-timed my husband and kids back in Belgium for a nice chunk of time on my phone and just rested. Received TONS of well wishes and support from my friends and family around the world which really warmed my heart! The Taxotere was okay and I was pretty satisfied with how the cooling slippers for my feet worked, only having to change the ice packs once. They weren't as successful on the hands, which seemed to warm quicker, so I just put my hands inside my cooler bag with the big super frozen blocks and that worked perfectly. The Cytoxan was less pleasant. It immediately made me dizzy and by the end my eyes and nose were super dry and burning
. The whole process took about 6 hours, but the nurses were super sweet and the atmosphere was very calming and friendly! Getting a taxi home proved to be a challenge, but eventually one of my favorite drivers came to save me....lol. Made some pasta for dinner and thoroughly washed all my stuff and now ready for relaxing. Feeling a bit of bladder pain, hope that doesn't become a problem. I've been drinking plenty of water. Suzy---so sorry the cold-capping has been disappointing. I hope that your does indeed grow back stronger and more beautiful
. Hope everyone is well and had a lovely holiday weekend!
Cheers,
Sabrina
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Hi Sabrina
We're on the same regime with parallel timelines, but I'm one infusion ahead of you. I had my second chemo yesterday. It went a lot faster this time than the first. It was like this - here you are, lets get your labs done, while you wait you can see the doc, we'll weigh you and take your blood pressure, okay now you're back, here's your pills (steroid, zofran, ativan). I put my cold socks on 15 minutes before the Taxotere, brrrr, then they started me up. I FaceTimed my daughter for an hour, replacing the ice packs at the half way point. Nothing on my hands; I'm too busy using them all the time. When the Cytoxin started up, I read my Kindle. I was luckier there, no reaction. Last time, I got extremely cold. This time, nothing. Did they give you anything for your dizziness and burning nose and dry eyes while it was happening. Maybe you can try putting some Aquafor or coconut oil into your nostrils with a q-tip to help with the burning? After I was done the nurse popped the Neulasta Onpro onto my belly and I was off. Felt tired from sitting there being infused, but still wasn't sick. So far, I feel pretty good today. I woke up with a little headache and took some Tylenol. (It's my new best friend) It also works well for the flu-like symptoms I get with the Neulasta. Are you getting Neulasta? If so, and if they didn't tell you, you should take something to help out with the bone pain. I'm taking Claritin. It works pretty well. Drink gallons of water. And keep moving. It's amazing how much better you'll feel
I'm on the April group, but please feel free to PM me if you want to compare notes. I’ve been keeping a journal so I can tell you what I experienced last time and when, not that everyone doesn't have a different experience. But some things are pretty standard Hope your week goes smoothly and you breeze into next week, when you're going to hopefully feel mostly normal again.
Cheers,
Nan
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Thanks Nan! Glad to hear your second session was faster! They gave me all my meds intravenously yesterday, including the steroid (Dexamethasone), Aloxi, and Emend. Maybe next time I will have pills too? I went in today for my Neulasta injection. Since I have a latex allergy the Onpro is not an option for me, so I have to return to the hospital for a subcutaneous shot. I did take a Claritin this morning beforehand. Saline nasal spray and moisturizing eye drops are helping the dryness and next time I will take them along with me. Last night I had some incredibly freaky hallucinations! The nurse today thought perhaps it was due to the high dosage of steroids yesterday? Today I just have a lingering, but manageable headache and dizziness. The dryness is a bit better and I am drinking lots of water
. My appetite is still okay, just some acid reflux, so having some small things to eat every couple hours. I did some light housework to keep busy and may go for a walk after dinner too. Thanks for sharing your experience! Have a great night!Cheers,
Sabrina
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Hi everyone,
Figured I’d post a brief update. Felt well going into my 2nd of 4 chemos and perhaps as a result of the pre med steroid didn’t sleep much so actually rallied to do a little hike on our treadmill this morning before the appointment. I feel fortunate to be able to be halfway and realize that others have a longer course. All went smoothly and I managed to ice my hands and feet successfully.
My head is another story - I look like a molting animal - but can laugh about it and makes for a very short morning routine which is great!
The doctor decided from my bloodwork that we could try this cycle without Neulasta. I’ll be very interested to see how that affects how I feel over the next several days. Of course, it does make me a little nervous about being potentially immunocompromised be we continue to pretty much stay home and certainly our kids aren’t going anywhere so I think my exposure is far less than if they were in school. Fingers crossed!
I hope everyone is doing well. Suzy, let us know how your day goes - I think you’re a few time zones behind (at least from me on the east coast) right? Nan and Sabrina, I hope you’re feeling okay a few days out.
I so appreciate the virtual friendship if we can call it that during this crazy life experience.
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HI all,
Happy to say that 6 days in I'm feeling surprisingly good! I had a couple of days where I felt pretty dizzy/lightheaded all day, especially on the day of Neulasta injection. I just took it easy and also took my herbal based liquid iron supplement which helped. Other than that, and I hope it continues, I feel completely normal-I'm so relieved!
I asked about ice for hands and feet when I got to the appointment but the nurse who was administering said it won't be until I'm on taxol that ice would be useful. Surprisingly the time went by fast and I was done in about 45 minutes. Good news-thanks to the legwork of my team the next treatment will be at the closer hospital.
Suzee-sorry to hear the cold cap is sounding like a scam..ugh, I find that so disappointing because I totally would have signed up for it if it weren't for the covid restrictions.
KeepingCalm-my original tumor was on the bottom outer edge of breast, and so there may have been cells nearby even though I had clear margins (there was also high lvi). I felt the new tumor, and also the type of tenderness that my first tumor had which became super painful. It was in the same area along the outer rim of reconstruction, and over the course of a few months it seemed to be growing- although the new reconstruction and scar tissue (and the quick timing!) made it hard to tell if that's what it was for sure, so I asked for an ultrasound during a routine checkup. Now that it's out all the tenderness is gone too. It's interesting because I know others who had tumor pain/tenderness as a symptom.
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Feeling it today
. Headache/dizziness continues, but today I feel like I have been hit by a truck. Pain in the hips, back, knees, and generally weak. Hope it goes away quickly! Julie--it's good to hear you are feeling well! I'm glad they worked it out so you will have to travel less
.Keeping Calm---I had the same problem with sleeping with the steroids, didn't sleep at all the night before my treatment. Good news about the blood work and not needing the Neulasta. Sorry about the hair
. Dreading that myself. Suzy---I hope you had a good day and are feeling okay tonight
. Take Care Ladies!
Cheers,
Sabrina0 -
Hi Sabrina,
Sorry you're feeling so crummy! Does seem it's probably at least in part the Neulasta but apparently TC can cause some of those things too. It sounds likes many of us though are feeling better within several days so stay the course and things will improve! My MO encouraged me to alternate water with Gatorade or just other drinks with sugar/salt in them or if you prefer water to eat that with crackers to combat any potential electrolyte imbalance that might be at play with dizziness or headaches.
Hoping you feel better soon! And as for the hair, it hasn't been as big a deal as I was anticipating (as is so often the case the anticipatory anxiety was worse than the actual thing) and is actually quite cool in this steamy weather!
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Hi, May friends. I haven't posted in a while, but thought I'd share a quick update. Taxol #3 of 12 was Tuesday. That's 1/4 of the way there. Mostly experiencing some fatigue and minor digestive issues. Also a bodacious outbreak of acne and the return of some vicious hot flashes that I thought I had left behind me--plus runny nose from the Herceptin. My hair seems to be throwing in the towel as of yesterday, with more and more strands coming out in the shower. Will see how long I can hold out before taking the clippers to it. Glad to hear that the anxiety beforehand may be the worst part, but still not really looking forward to it.
I also got an update on the Herceptin/Ogivri situation. It seems that I got caught in a really weird confluence of circumstances. The hospital had decided some time ago to go to biosimilars as their preferred first-line treatment, with a cut-over date of May 1. My treatment plan to use Herceptin was finalized and communicated to me in April, but didn't take effect until mid-May, and nobody really noticed that I'd be caught in the change-over. So, after a lot of discussion and intervention by my very apologetic team, I will be "grandmothered" into treatment with Herceptin going forward. I did feel better knowing that it was at least a medical decision made by oncologists to use the biosimilar, and not a refusal by insurance to pay, but I won't lie -- I'm relieved that this worked out as it did. They have apparently now updated all of their documentation and protocols so that nobody else will be surprised this way. It's the kind of adventure none of us really needs.
I hope that all of you are feeling at least a little well for at least part of the weekend.
--Judy
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Hello All! I just wanted to pop on and say “hi” and check in with everyone.
Last weekend I was dealing with a sinus infection that seemed to come out of nowhere. My MO put me on a 5 day course of antibiotics. Though I still am dealing with sinus drainage and head pressure but it’s much better then it was. Is anyone else dealing with sinus issues?
Day 12 after chemo and my hair started falling out. It’s crazy how fast it happened. So last weekend I let my daughters cut my hair into a nice bob and then the next day it was falling out. So this morning my husband buzzed it all off. I shed a couple tears in anticipation but after I was happy to have it over with. Plus it was hard to even cook dinner last night as I pulled hair out of my meal 3 times! Yuck. I headed out to a wig shop today and when I arrived they were closed for lunch. So I will have to try again tomorrow. I purchased a few head covers from amazon to get me by.
Hope you all have a great weekend!
-Christie
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