Starting Chemo May 2020
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Hi All,
I went for my Round 2 of 4 infusion yesterday. All went well. I felt weird last night for a bit, but then felt pretty good this morning. Very energized. I think it may have been the steroids. So, I went for a 2 mile walk, got some things done around the house, and then took a nap. Ha ha! The fatigue is starting to set in. I am waiting for my Nulasta to start its injection. Should be starting any time now. KeepingCalm, I am also molting! I look like a homeless old man. I have probably lost 60% already. I ordered a wig, but I won't have it until mid June I think. I have a few scarves. I just try and avoid the mirror now.
Christie, Sorry to hear about your sinus infection. I haven't had that yet. But I have seen several other posts of people having pain and dryness in their sinuses.
Arizona, I am not sure if the Cold Cap was a scam. But they did wait to tell me much of the hard info about it until after I made my first payment. They keep telling me they have never seen anyone else lose hair like I am. But I am doubtful. I have been following the rules exactly. I feel like I am over it now. I am accepting the hair loss. I also decided to keep going with the cold cap just to keep my folicles heathy and aviod the small chance of permanent alopecia that comes with Taxotere. I am going to do what you did. After I get past the worst of this chemo, I will cut to a bob. Then if that is worse. I have ordered clippers to have on hand for a shorter buzz.
Judy, Congratulations on putting 25% of this behind you!
Sabrina, Hope you are feeling better soon and can just rest and take care of yourself.
Nan, I hope you are feeling well too.
Have a nice evening all.
-Suzy
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Hello- Judy, great news on herceptin! Very proud of your persistence. It did make me feel much better once they changed me to herceptin and not the biosimilar. I called my insurance first to make sure they covered it before asking. I’ve had my 3rd this past Thursday. So far so good. I am up all night after due to premed steroid on the first night. I find the Benadryl premed makes me very jumpy And restless for at least an hour. I’m going to ask if they can cut that in half going forward. I’ve also had a runny nose after herceptin, but not too bad. My MO is only in the office once a week due to COVID so they want to switch me from Thursday infusion to Tuesday. I feel like I’m going to get a double treatment soon which makes me a bit nervous having to deal with a bit more side effects in a short amount of time. Next week is a Thursday and then I’ll go back in the following Tuesday and remain on Tuesday until I’m finished.
My MO cleared me for acupuncture and have my first appointment today. A lot of people swear by this so I’m going to give it a try.
Christie- sorry to hear about your sinus infection. Something extra to deal with isn’t fun.
Strands of my hair are falling out. I decided to get a really short haircut yesterday before buzzing. It’s almost a buzz. Trying to approach my hair loss in stages. It seems a bit more bothersome for me. I Have an appointment to see about awig on Friday. If my hair loss is worse, I’ll have her buzz it then.
Thank you all for your presence. Since COVID, I haven’t told too many people since I’m working from home so this group is really helping me through this. Very thankful for you.
Have a great weekend!
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PJAL — well well my Thursday chemo buddy — we’re in sync again. I’m Wednesday next week, then Tuesdays for the duration.
They did have me scheduled for Weds and Thursday next week, but that snafu was caught and corrected. I like Tuesday better, so the office is open instead of me calling on a weekend if there’s a problem.
Had a new insignificant SE — hiccups. Had them a couple times last infusion but 25 plus times this infusion. Thankfully they don’t last long. Good news is no runny nose - so I’ve traded it seems.
Hope your today is delightful.
🌈
j
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Good to see everyone's updates, even though some are rough.
Paula: Was thinking about you as I pushed on ahead with the Herceptin inquiries. When the pharmacist asked, "If we can make it happen for you to change over, would you want to do that?" I almost cheered! Tuesday is infusion day for me, also. This Tuesday will be the 4th Taxol, but only the 2nd trastuzumab (and the 1st actual Herceptin). So, it sounds like you have Tuesday company. Maybe they can adjust doses or something for those 2 close dates? Or maybe you just get through it and then you are that much closer to done...
--Judy
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Judy, it made me feel much better and less anxious about treatment when I was able to get the herceptin. A little battle, for me, worth fighting. Doesn't it feel good to take part in your own treatment?!
So, it looks like ByHisGraceTwice, you and I will all be having treatment on Tuesday. I am pushing through. I do not want to postpone anything unless they tell me it's necessary. I am hoping acupuncture helps. It was just an informational meeting today. My first therapy session is on Wednesday before treatment on Thursday. She is hoping that we are able to reduce these SE since they are so close together. Never done acupuncture before, but willing to give it a try!
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Ladies - Wondering if I can join your May 2020 Chemo group? I'm actually starting chemo on June 3rd and started a thread but no one has joined, most likely due to Covid. Really don't want to go through this without the extra support this site has to offer. I'll be getting Taxotere and Carboplatin. This is my second go around with BC having been originally diagnosed with stage 3B TN in 2005. At that time I went through a lumpectomy then 6 rounds of TAC and 30 rounds of radiation. All was good for 15 years and then in late April I felt a lump in my lumpectomy scar tissue that felt bigger and sure enough again I'm TN. This time I had to have a mastectomy and chose to do a bilateral. I'm not going through this a third time! Because I had my lifetime limit of Adriamycin my MO is changing my chemo to Taxotere and Carboplatin. Not looking foward to Wednesday but as I tell everyone I know I can't get to the other side until I go through it. By the way, my "Camama2" name means California mama of 2. I live in San Diego and my name is Laurie.
Laurie
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Paula, where are the acupuncture needles inserted? Is the goal pain relief or to reduce SE? Did it work
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j
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Hi Laurie, yes of course welcome welcome. I’ve added you to our roll call.
I just wanted to check in. Had my 2nd round of Taxol on Friday (now I’m 25% through too). I couldn’t tolerate the dumb ice packs again. Trying to decide if I’m going to give it another chance or not. I developed mouth sores and an ear infection last week, so I’m on the magic mouthwash and antibiotic pills and drops. Also, hiccups yes. Yay. As if I don’t have enough going on...
Today is day 4 and I’ve got the bone pain, nausea and mild neuropathy. I’m making myself exercise 20-30 minutes each day, hopefully it helps. I noticed my hair falling out more than usual so had my daughter take the the #2 shaver to my head and sent my husband out for the lint rollers. My scalp feels like it’s been in a too tight ponytail all day. Wore my hat with hair out today and actually felt pretty good about it
Is anyone else getting more and more worried about our safety with the Covid restrictions lifting too quickly? I’m so worried we’re going to have a second wave and end up in even more of a lockdown than before!
Take care everyone!
Angela
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Laurie, let us know how it goes Wednesday. this has been a great group. I think it’s helped even more since COVID.
ByHisGraceTwice, acupuncture was an informational meeting on Saturday and thought it was the first therapy session. It’s mostly for SE of constipation, SE effects of steroids and anxiety. I feel like I have a double round coming up and am trying to avoid more SE. she said she will be staying away from any areas of surgery. She showed me by inserting a needle in her hand. My first real appointment is Wednesday morning. I’ll let you know how it goes.
Angela, my hair is starting to come out now. I think I’ll shave it this weekend.
I’m concerned about COVID restrictions lifting. I feel like there may be a second wave. I’m hoping I’m wrong. (Although it may be nice for someone to actually accompany me to any appointment as I have yet to experience that since my diagnosis in February). This is where some of the anxiety is coming from. I had a conversation with a co-worker today who has heard talk about us being locked down again late summer/early fall.
Take care everyone!!
Paula
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HI Laurie, welcome! Sorry to hear this is your second go of it.
Angela-sorry to hear about the side effects, and good for you for managing to get out exercising despite everything. I'm trying to make a point of walking for 30 minutes a day too. As for the mouth sores, I was feeling a little like some may have started although I had spicy Indian curry and then thai food the next day so maybe I'm taking my chances..
Paula, when you say you are talking to coworkers does that mean you're still working? I am a self employed but decided not to reopen until chemo is over. Our licensing body just allowed us all to return to work a few days ago but with many safety provisions. Aside from being immune compromised or not feeling good from chemo, I also worry about a second wave as things start to go back to normal.
My next chemo is Thursday, and I'm happy it will be in the local hospital now. Interestingly the previous hospital doesn't do picc lines as a standard, but this one does so they are assessing me for one going forward.
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snowflake22, I am actually working, but working from home. I work for the State of Maryland (courts). Next week, we will begin a “soft“ reopening for court hearings. For us, we will use video, but it will be mandatory for our clients to appear in our office with their attorney for a video hearing. I’ve told my boss that I will not be coming back until this portion of treatment is complete, if at all. I’m thinking about leaving. It’s a stressful job and, even though I’m in treatment, I’m enjoying being home. A love/hate relationship with COVID!
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Hi ladies.. Just checking in on my status. 1st taxol on Friday went ok, then Sunday woke up with a bit of nausea, so took Zofran. Maybe I should've waited.. Regretting a little bit cuz I've been so bloated, cramping, and this dull headache won't go away since then. Been drinking allot and walking allot but my stomach keeps getting bigger as if I was pregnant. So I did called the nurse line today, took miralax and gasx and see if it gets any better. Normally I wouldn't worry about bloating, but this felt like I was going to blow if it continued. Anyone go through this weird feeling? FYI I've lost 4 lbs since Friday..
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Oh so sorry Cali! That doesn't sound pleasant at all and I hope you are feeling better fast! I didn't have any nausea or stomach issues, aside from some cramping after meals. But man.... was the last week awful!
I was barely unable to even sit upright for most of it due to the headache and dizziness, and the pain/weakness was overwhelming. I also had a fever for days 3,4, and 5 and my MO was upset that the doctor on call this weekend didn't have me come in to check for neutropenia. Fortunately the fever is gone now and I am feeling somewhat better. She did say that what I thought was simply a rash on my arm, is actually a chemical burn from the Taxotere, and I have to go next week to have a port placed
. To the ladies winning their Herceptin batttles---well done! I'm glad you stayed strong and things look to be working out.
What's going on with all the hiccups??
Lauren--welcome to the group! These ladies are amazing
.I hope everyone is doing well and staying safe in these difficult times. Personally, I am feeling not only concerned about the COVID risks as our area opens back up, but now I worry about the constant protesting in downtown DC. I support it, but I don't want to get caught up in it when I go to my appointments! I'll have to go several times next week (COVID testing, PS follow up, Port placement) and I am nervous about going into NW DC. Am I being paranoid? My son says yes, but I can't help but worry. Hopefully things will calm down.
Sending warm thoughts and virtual hugs to all!
Cheers,
Sabrina
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PJAL — did you have your infusion today? How was it and how are you tonight? I’ll be in sync with you next week but this week will do tomorrow.
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Hi everyone,
I think I’ve been MIA a while on this thred. Had my 2nd TC infusion last Thursday and am largely doing well. My MO tried me without Neulasta this time which has been an interesting experience to compare — allows me to realize that the side effects last time were probably 50/50 Neulasta and chemo. I do feel better overall without Neulasta but am definitely having joint pain that must be chemo related. That said it’s not enough to need any painkillers whereas last time I took Tylenol or ibuprofen for joints and headaches for the better part of a week. Additionally, I dealt with some unpleasant constipation this time that I’ll ask how I can better head off next time. Fatigue is definitely more noticeable this time which definitely makes things harder with my kids and worries me a little going into rounds 3 and 4 but obviously one day at a time and eye on the finish line!
Sabrina, so sorry to hear about that burn (how interesting) and your port placement. Hopefully you’ll find that manageable but disappointing to have to deal with another procedure I’m sure.
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Hi Everyone,
My first TC infusion went pretty well. I did have a sinus headache for two days which I tried to cure with Tylenol, but eventually got permission from my oncologist to use Mucinex sinus medication which works much better!
I am now enjoying the period of feeling good before my 2nd infusion on June 11. I have a physical therapy appointment booked for my arm on Friday. Since my BMX I can't move my right arm straight up to the ceiling.
Sabrina – I also don't have a port, so that is something too look out for. That's a shame you have to have one put in.
Good luck to anyone having infusions this week.
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KC---It is interesting to see how you are doing without the Neulasta. I hope the fatigue passes quickly. Colace worked well for me with the constipation I had after my mastectomy and my MO recommended it during chemo too. Hang in there! I can't imagine doing this with young kids at home! You are a warrior!
Sue-- Glad you are doing well! Good luck with the PT
. I developed a rash immediately after the chemo infusion, but it went away. A few days later, this one appeared near my infusion site so I showed it to the MO on our virtual call yesterday and she said it is pretty common. Basically, the chemo damaged the vein that the IV was in and infiltrated the surrounding skin causing a "chemical burn" or scarring. She said there is nothing that can be done about it and that the port will be necessary to keep it from happening again. Obviously my veins are no match for the chemo . Hopefully yours are! Yesterday I received the loveliest gift from a dear friend I met in North Macedonia that I haven't seen in ten years. It arrived in the mail as a surprise and I wish I could send the same to all of you! It is very sweet
. If you are looking for a lift or just a quick smile, grab a copy of this inspirational little book . https://www.amazon.com/Dear-Friend-Letters-Encouragement-Breast/dp/1452163421/ref=sr_1_1?crid=2LA5J5CL3CTC9&dchild=1&keywords=dear+friend+by+gina+mulligan&qid=1591192440&sprefix=dear+friend%2Caps%2C247&sr=8-1Cheers,
Sabrina
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hi,
new here.
Was diagnosed with stage3 triple negative breast cancer on May 5th. I started chemo first, since it was already in some of my lymph nodes.
I am 48 years old with no family history of breast cancer and live in San Diego, CA.
I am doing 8 rounds of chemo - once every 2 weeks.
first 4 treatments are with Adriamycin and Ctyoxan.
The last 4 treatments will be with Taxol.
After chemo I will have surgery and then 6 weeks of radiation treatments.
At least so far this is the deal. I also just submitted my genetic testing kit for the BRCA gene -so we'll see what that comes back with.
My first chemo treatment was on thursday May 28th. I was really nauseated that day it was terrible
despite the 3 anti-nausea meds given prior to chemo and the anti-nausea meds I got filled at CVS. I'm kind of a wuss too i hate feeling nauseous.Day 2 my neulasta meds kicked in, still fatigued but not nauseated anymore - but still taking my anti-nausea meds
day 3 body aches set in from neulasta especially in my neck - it felt like all the muscles in my neck were sore - my skin also started feeling sensitive. wasn't feeling nauseated at all, still taking anti-nausea meds but uggg constipation is now a problem.
day 4 started taking claritin for the body aches from neulasta and that is helping a lot, no nausea and stopped taking anti-nausea meds, trying to have a bowel movement - was taking colace, smooth move tea, eating salad, fruit, etc. feeling super uncomfortable with constipation.
day 5 no more body aches from neulasta not taking any meds at all for any ailments - feeling pretty good today and especially after finally having successful BM - feel like a new person .....almost.
day 6 feeling pretty normal today EXCEPT i'm an emotional wreck...idk why either...but many bouts of crying and yelling at my kids for leaving dirty dishes laying around, etc. it was quite an emotional day and i have no idea why - i usually just keep the kids on task with picking up their debris (note 2 teenage girls one 20yr. old son) - i mean their age group is trying at times anyways.
Today is day 7 - i feel ok other than some indigestion...I'm hoping taking rolaids is ok...i need to research this. Not quite so emotional today....but because of this weird emotional bout - it is what prompted me to login to this site and start dialogue...i want to know if others have experienced things like this too. I am excited that my mom will be visiting me in July (she lives in South Carolina - the opposite side of the country), I've had her hold off on coming because of the whole COVID19 thing and didn't want her risking her health, etc. She also plans to drive out after my chemo treatments are done and stay here through surgery, etc. to help me. I love my mom.
In general I'm sort of a high stress person but deal with it pretty ok - I work full time and an IT engineer (luckily from home) and I also own an Escape Room business with my husband - so i'm generally pretty busy and don't have a lot of free time at all for myself - of course this has all changed now. I am lucky that we have promoted one of our employees to manager and he has taken on many responsibilities (so my husband and I can take a real vacation sometime) - so he has stepped up big now for me as I am staying away from the business as we slowly re-open (after being closed due to COVID19).
So that is a little bit about me and I'll leave it at that since this is a group for chemo treatments. I'll be curious to see how many others are dealing with the same issues i have/will.
Love to all
You can call me Christine
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Hi Christine, welcome. Yes I’ve definitely had some emotional days throughout all of this. The oncology therapist at the hospital assured me this is normal. Also, we’re just having cabin fever. I’m used to being home alone most of the time and my husband and 18 yo daughter have been here with me since mid-March. I’m glad you’re going to have your mom to help you, it will be nice to have the support. My mom is not that type of mom so I have to rely on friends and my husband’s family instead. But I do have support and we all need that right now! This group has been really helpful for me, especially during the Covid time and with the riot curfews happening.
Angela
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Cali aargh....hello, im from April 2020 chemo and pop in on other boards to see how people are doing. I have a similar dx to you and I’m also doing AC-T. I’m doing the taxol first and then AC. Today was my 10th taxol. I have taken the zofran occasionally. Mostly before bed out of fear of waking up with nausea. The pharmacist did my chemo teach and stressed to stay ahead of nausea and to take it if I think I feel bad. It hasn’t caused any se that I have noticed but I know it can cause constipation so I use miralax every couple of days to keep things moving. How have you been doing with water? I encourage you to drink tons to flush it all out. If you take another zofran and feel like that I’d see if there are other options for nausea.
I’ve done well with taxol and I’m happy to answer any questions if you have them. I know the experience of chemo is so different for each of us. I’m nervous about AC.... how long can I be this lucky😃.
I hope by now you are feeling better. If you have any questions I’m happy to try to help. ❤️❤️
Heather
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Hi, everyone. Look at all of us, plugging along in this rotten adventure. Laurie: Glad you found us but so sorry that you have to be back here.
Taxol 4 of 12 was Tuesday. Hair now starting to come out in fistfuls, but it still appears relatively normal-ish on all of those Zoom calls, so going to try to baby it along for as long as I can until it starts looking pathetic. At this rate, it probably won't be more than a couple of dys. The bathroom is a mess, though. Some tingling in hands and feet despite icing, which is really a bummer. I was hoping that the nerves would have held out a little longer. Constant nosebleed from the (now name-brand) Herceptin.
Paula: I completely share your concerns about COVID and a second wave. I work at a large university that's planning to have students come back in the fall. Fortunately, I can do my job from home, with the full encouragement and support of my boss, peers, and team, but I have so much trepidation about how this is all likely to play out. Is anyone else completely on edge the whole time you're out to get treatment? My regular massage therapist and the acupuncturist that a friend recommended both emailed to say they were reopening their practices, but it just doesn't seem wise right here and right now.0 -
Hello everyone - I am dropping in to wish everyone well and to send you love and encouragement as others did for me. I started chemo Jan 21st and had last infusion on April 28th - I had 4 DD AC every other week, then 4 DD Taxol every other week . Started Arimidex on May 13th and had tissue expander replacement surgery and port removal on May 18th. Radiation starts June 24th for 6 weeks - and I am definitely enjoying this period of time where I can just enjoy feeling better as each week goes by. Starting to lose my eyelashes and eyebrows so I am very glad that its summer and I can wear sun glasses. Only lingering SE is my intestines - I swing from constipation to ... well the opposite and then back again but I am getting better at figuring out when I need to take colace/seneca. I had been told to focus on hydration, protein and exercise during chemo and have been told to continue that focus during radiation. Exercise and hydration are also commonly shared as a "best practice" for managing SE from the A-I.
b00pster - the emotional swings are definitely common - there were some days that I would just burst into tears without knowing why - and other days that I just wanted to be alone and curl up. I was given some Xanax to help with managing those days.
I will check back in and see if anyone has any questions - I learned a lot from all the wonderful women I found here
Take care and be well
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Hello Everyone, been thinking about this wonderful supportive group.
Had 4th round yesterday. Experiencing a lot of hair loss. It was quite an emotional day for me today. I was thinking of Angela and her beautiful buzz cut.
I had my first acupuncture experience on Wednesday. It was interesting. It relaxed me more than anything. Trying to help with any SE before they begin and anxiety. Since I wasn’t going in for any pain related matter, insurance won’t cover. I think I’ll try it again. Not sure if it really works, but it was so relaxing and I was in a better mood as I left.
I’m doing ok after this round. A little fatigued, but nothing major. I was having such problems with the Benadryl (pre-med). I asked nurse about it before she injected and told me she could try half dose. I jumped on that. I was still a bit jumpy but much much better. I am going to ask to reduce steroid as well as it keeps me up all night after infusion. My rash after my first round is resolving. Not sure if that was from herceptin or chemo. I hate rashes and I’m happy not to itch any longer. Had a few nose bleeds recently. Trying to eat more protein since it looks like my RBC and WBC are going down. Anyone use protein powder?Have constipation and I’ve learned not to wait to take anything. It’s the first meds I take when I get home. So far, it’s working.
Next infusion is Tuesday. Will be thinking of you. Hope everyone has a great weekend!!
Paula
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Hi Paula,
I have been going between being fine with my hair loss/just wanting it to be done already and completely sobbing about it. I'm not really someone that cared about (or even liked) my hair so this has been a surprise to me. I just feel like everywhere I look there is hair that fell out. I'm actually going to shave it off with an electric shaver today (we did a #2 attachment last weekend, this will be no attachment). Yes I'm going to be careful (well, my daughter will be), I know the risks. I just feel like it's harder with how long it's taking. I thought it would be over in a few days but it's already been 7 and I still have the top and most of the back to go.
Protein powder, yes. After I hit 40 and had a harder time losing weight and keeping it off, I started making myself do strength training at least twice a week. Protein shakes were a big part of my life before the gyms closed and I gave up on trying to keep my weight down. I used to use the Muscle Milk Chocolate powder, but now I just buy the Premier Protein rtd ones at Costco. They're so cheap it doesn't make sense to make the extra effort. Do any of them taste great? No. But those two taste the best to me. I also like Boost bars for a little chocolate break/protein boost.
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Hey Angela, I feel your pain about the hair loss. I have been sobbing on and off this weekend too. I bought a wig and had it fitted on Friday. I have pieces falling out everywhere and it's making a mess. I have mixed emotions. One minute, I want it gone and the next I want to save each and every strand of hair. It is really amazing how much hair we actually have. I thought I didn't like my hair until I started losing it.
Thanks for the tips about protein powder. I am going to try it. I bought protein powder this weekend that was supposed to arrive today. The gym in general was a big part of my life before the shut down and I am longing for it to reopen. I have some equipment at home, but am bored with it and just want to get back out into the world. It was my release.
Let us know how you and your daughter do with shaving your hair. Will be thinking of you.
Paula
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Hair loss starting here too- keeping it all in a top knot for now but will get my son’s girlfriend (Who is an aspiring hairdresser)to cut it short for me when I get to the point I can’t avoid it! Paula said it well-it does feel like one minute wanting it gone and the next wanting to save every strand..
I had very low energy yesterday, I think it’s a pattern with third day after treatment. Absolutely no nausea though so far.
Maddy- thanks for your encouraging posts! I Hope your exchange surgery went well. I was wondering what post chemo symptoms will be like in the weeks we are finished and was surprised you are only now losing your eyebrows and lashes.0 -
Ladies,
Christine – I'm also from San Diego! I'm going to Kaiser at Zion for my treatment, how about you?
I had my first round of chemo on June 3rd. Since this is my second go around with BC I thought I had educated myself about lots of things, including my chemo which was TAC the first time around. What I did not know until I read it from a post from Suzy was that Taxotere can cause permanent hair loss. As soon as I read your post I started researching. The reason why I did is that 15 years ago I had a TON of hair (on a scale of one to ten I was a 10, my hairdresser would have others come feel how thick my hair was). I lost my hair with TAC by the beginning of my 2nd round. After all treatment was done I kept expecting my hair to grow back. My hairdresser has been in the business for 40+ years and has told me that I am the ONLY person she knows who's hair didn't come back after chemo. Now mind you I have some hair, but now instead of a 10 I'm more like a 1 or 2. Having read Suzy's comments about Taxotere I decided if it happened to me once it could happen again and I don't want to be permanently bald. So I'm doing the cold cap, Penguin System. Luckily my center will allow my husband to come in only because I'm doing the cold cap. Let me tell you ladies it is COLD, like -26 degrees when it goes on. Excruciating pain for a few minutes but I keep telling myself "I don't want to be bald". Now mind you I don't mind being bald for the next 6-8 months (don't want it but survived it before) but it's the potential permanent hair loss I'm really worried about. We had to change the cap 22 times, starting one hour before chemo started until 4 plus hours later. My husband was a trooper and had about 7 minutes in between each changeover to catch his breath. I don't know if it will work but I'm bound and determined to try it.
I must say I've been doing pretty well since my first round, my main complaint being the fuzzy/dizzy feeling like I can't focus. Oh, and wanting to climb out of my skin from time to time. But no nausea or anything else, at least not so far.
I'm still recovering from my double mastectomy which was not quite 4 weeks ago. This all really sucks but I'm glad I'm not going through it all alone. This Covid-19 stuff makes it SO much harder for all of us!
Laurie
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Hi All,
Laurie, I am glad you are doing the cold cap since you had that experience last time. It is a pain in the ass. But if it helps keep your hair later, it will be worth it. For me it has failed in keeping my current hair. I would say it is 75% gone. But I continue to cold cap because I am protecting it from the permanent alopecia. I am told that is the long term goal. My Penguin rep tells me this, and my Oncologist agrees. So, even if you lose hair. Keep going to protect those future folicles.
As for my hair now, I am now sporting a Friar Tuck look on the top of my head. I haven't buzzed yet. I did cut it myself into a short bob, so the scraggly length of my hair still sticks out a bit from under a scarf. I was able to buy a clipper online. So I am ready when I can stand it no more.
I am at round 2, day 13 today and feeling pretty good. Going to head out for a few mile walk soon.
XO
Suzy0 -
Hi Ladies, I hope you are all well. I'm in what is supposed to be my "good week" before my next round next Tuesday and it has not been going great. The fever came back on Sunday night, I had blood in my stool on Monday, and my hair is falling out in clumps already. Thank God I had it cut to a bob on Friday! I am not ready for this. Just showered and lost handfuls of hair as I shampooed
. Then when I brushed it a sink full came out and I have a bald spot on top of my head. Been sobbing uncontrollably since. Tomorrow I go for another Covid test even though my sinuses are dry as a bone (no idea how they will get a suitable swab) and Friday I have the port. Feeling cheated out of my "good week" and angry/sad/devastated/irritated all at once! Sorry for being a downer, just needed to vent and have someone understand how I actually feel. Hugs to all!Cheers,
Sabrina
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Sabrina, no need to apologize for complaining. This is the place for that. Yell and scream and stomp your feet! I know I feel the same at times.
I also was very angry and very sad when the hair started coming out in clumps. I was under the impression I wasn't going to go through that because I am cold capping. There were lots of tears. My oncologist says I needed to go through all the stages of grief over my hair. I think I am in acceptance most of the time now (with flashes of anger). My husband said he was surprised that with all the hell I have been through in the last 3 months, losing my hair seems to be the thing that effects me the most emotionally. Of course it does!
Also, like you, the fatigue seemed to last longer in round 2. Although other things seemed a bit better.Sending you virtual hugs.
XO
Suzy0
