Starting Chemo May 2020
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J-Thank you. I feel like I had enough information to advocate for this. It was difficult for me because I’m a people pleaser. They showed me the bags before starting and I will be checking each time
Angela and Christie - good luck today. Will be thinking about you.
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Good Morning all! Just wanted to offer advise for anyone who hasn’t had their first chemo treatment about the use of the steroids. My protocol was to take 2- 4mg of dexamethasone in the morning and 2-4mg with an early dinner the day before chemo. I did that and I was awake all night, I managed to fall asleep around 4am for 2 hours. If you can try and take the pills early in the morning and then again around 1:00 you may have a better chance sleeping.
Then the next day I had an allergic reaction to them. My entire chest, face and upper arms were red and hot and I had swelling on my cheeks. So my doctor had me come in early for treatment to check me out. They decided the best thing to do was cut my Dexamethasone in half. So I had half the dose during the chemo infusion and I will be taking half the dose today.The rest of the infusion went well. I iced my hands and feet during the taxotere which got a bit uncomfortable but seemed to go quickly. No side effects yet except dry scratchy throat. Just waiting for my Neulasta to go off around 5:30pm.
Where is everyone shopping for their head covers? I need to purchase a few to get ready for hair loss in a couple weeks.
-I hope your infusion went well Angela!0 -
You made it, Christie. One down! I'm sorry to hear about the bad reaction to the steroid. (Seriously, how ironic is that?) Hope you are feeling better now and can get some sleep.
For haircovers, there are a ton of resources hiding in these message boards. I followed some of the links in this thread: https://community.breastcancer.org/forum/69/topics.... Then ordered headcoverings from about 3 different places to see what I might prefer. Somewhere in all of that is also information about possibly getting a free wig from the American Cancer Society.
I decided not to purchase a wig at this time, although I did get a one of those halo half-wigs to wear under a scarf of cap. I looked everywhere online, but couldn't find anything that seemed even close to my kind of wild curly/wavy hair. Since I'm in the South, where it's already getting hot, and since my life will consist of Zoom work calls for the foreseeable future, it didn't seem like a good option for me right now. TBH, this feels like the next big hurdle to get across, but everyone tells me that once the hair is gone, you stop worrying about it falling out, at least.
--Judy
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Hi Ladies,
Just checking in. Arizonasurvivor42 - thanks for saying something about the steroids! I had to take 20 mgs (5 pills) 12 hours and 6 hours prior to my infusion, so it was at 11:20 pm and 5:20 am. My infusion went okay, more on that later. When I was getting ready for bed last night I noticed that my whole chest was red and itchy. Then I saw it was on my whole torso. I called the triage hotline and they just asked if I had a fever or shortness of breath. No, just the rash. So then they said to take a dose of benadryl and then take it again in 6 hours. If I still had the rash this morning, I am to call them back. I do still have it and woke up in the middle of the night with it itching like crazy. I also noticed it's on my arms and legs too. Ugh.
So about my infusion. After taking my 2nd dose of the steroids I couldn't go back to sleep so I just got in the shower and tried to rest on the couch afterward. I put on my Emla cream about an hour and 15 minutes prior to my lab appointment. I put on a big glob and then covered it in plastic wrap. It worked great! No pain at all with the needle prick. Went to see my MO, who told me I shouldn't be taking Vitamin C, my multivitamin or Glutamine right now. She said I could start the Glutamine next infusion, but she wanted to be sure everything went okay for the first one. After waiting more than an hour to get in to the infusion area, I was nervous again. My nurse was so nice and helpful. She said I would need to ice my hands and feet the entire time (not 15 on, 15 off) for it to work. I put on my ice mittens and booties and lasted about 5 minutes. My hands were hurting so bad from it. I will try again next time but I just don't know if I will be able to tolerate it. Overall, my infusion was okay and I was able to rest for some of the time. I read and played games on my phone, and took a few phone calls. It was a very long day, I got there at 9:00 and left at 5:20. They said the next one shouldn't be as long but it would still be slower than normal.
I've been taking my anti-nausea, pepcid and colace and will continue until tomorrow or Monday. Between the benadryl and the anti-nausea pills and just not sleeping well with the rash I'm feeling pretty groggy. I am expecting that by tomorrow I will begin feeling the side effects. Oh and I almost forgot: I don't have to do the Neulasta right now. She said that since I'm young she doesn't think it will be necessary but obviously will be keeping an eye on my numbers.
For headcovers and wigs, I got some pre-tied scarves and a bamboo beanie from Headcovers.com. I also got some halo wigs there, but I returned them. I won't be using them anymore though. Their customer service is terrible and I had to contact them numerous times to get my exchange done. I got my wig from wigoutlet.com. I found it on Headcovers.com and also on wigs.com, but paid just over half price on wigoutlet.com! I got my wig care supplies and some sew-in bra pockets (to convert some existing bras to mastectomy bras) on the American Cancer Society's TLC store. Their customer service is GREAT. If you do that chat or call, they can sometimes give you a coupon for up to $70 off a wig (they even have some for that price or lower!). Sadly it's not available in my area.
- Angela
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Glad to hear from you Christie and Angela, sorry you had a reaction to steroids.
Interesting about steroids. I wasn’t given any beforehand until the time of treatment. Although I still have effects. I wonder how long that will last? Are they given each time? I was also told not to take Glutamine. I was told to take calcium, vitamin D, and a multi-vitamin. I was taking a turmeric supplement and thought I’d ask before taking after my first treatment. That was a big fat no.
I am a little upset about losing my hair. Nurse said about 14 days. Thanks for the info about the wigs the halo half wigs. I’m trying to think of something fun to do with it beforehand. I’ve never cut my own hair, maybe I’ll experiment!
Hope you have a relaxing weekend without too many side effects.
Paula
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Angela: Hope you are feeling better now. Sounds like you had a really miserable go of it. If you can power through the start of the icing, you start getting numb and not noticing quite so much. I wore some really thin socks and you could probably get some very light cotton gloves or even put thin socks on your hands first, just to protect a little?
Paula: Which chemo meds are you on? Just trying to compare notes. I was warned off the anti-oxidants (A, C, E), but told I could continue with my multi and my D. The advice on the L-Glutamine was that it's ok, but no evidence that it will prevent peripheral neuropathy, which is what I was asking about. I'm working with an Ayurvedic practitioner who suggested Ashwaganda and milk thistle, but those also got nixed. Here are two pages from breastcancer.org that I found helpful--in as much as anything is providing clarity these days.
- https://www.breastcancer.org/research-news/supplem...
- https://www.breastcancer.org/tips/nutrition/supplements/known
My assortment of pre-tied scarves came from 4women.com (pretty fabrics), tlcdirect.org, and hatswithheart.com (including some facemasks). I found myself getting excited whenever a new package arrived, until I remembered what it was for....
Has anyone noticed what a small group we are -- just 7 on the roll call vs. 30+ in the starting April 2020 thread? Am wondering if that has anything to do with COVID, or if it's just random.
--Judy
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Hi everyone,
Interesting discussion about supplements. My MO said no supplements whatsoever.
Paula, I am finding the hair thing so weird just from the standpoint that at the moment I’m pretty well and of course look the same so it seems as if nothing has changed and then presumably at the end of this week it’s all going to fall out! I figure I’m going to wait until it’s evident it’s happening and then have my husband shave it relatively short (I found some videos on the internet saying not to literally shave it to nothing left in terms of preventing any irritation.) I have a feeling I’m going to find it momentarily upsetting but after that will just get used to it. I do find that with time I adjust!
Judy It is interesting we’re such a small group. In my case my MO wanted to push my start date (May 7) out as far as possible form surgery (end of March) to avoid the Covid peak but here in Maryland I don’t know that we’ve clearly hit that peak yet anyway. Also, my BC was identified at a routine physical (wasn’t old enough to be getting mammograms yet) and what was felt was so vague and in fact not felt by the 2 surgeons I ultimately consulted with - they literally said at that point I had a normal clinical breast exam. So needless to say, I would totally have been someone for whom a physical would have been postponed indefinitely. And the morning of my surgery, the MO said I was in just under the wire for “elective” surgeries so could have had that postponed as wel - I had an original DCIS Dx (biopsy clearly missed my IDC who has an aside made this whole experience even more if an emotional roller coaster).
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Judy- I am on Taxol w/ Herceptin once a week for 12 weeks. It’s strange how each MO’s rules on supplementation are so different. I noticed our small group a few days ago and thoughts are that it is COVID related. Thanks for the links.
KeepingCalm- Wow. That is a roller coaster ride. I’m glad you got in and stayed on top of it. I was supposed to begin the reconstruction process with an expander at the same time as mastectomy, but the tissue expander would need to stay in longer because that would then be considered an elective surgery and no telling when that would happen. I didn’t like the idea of the expander staying in for a lengthy period of time with the risk of infection. There was also coordination of dates with plastic surgeon which could delay surgery and I did not want to wait with the uncertainty of the COVID situation. My surgeon called to hear my thoughts and scheduled me right away. I’ll wait until after treatment on deciding which type of reconstruction, if any after COVID calms. I was supposed to stay overnight in hospital, but was given brief instructions and released within an hour and a half after surgery. I’m glad I was able to leave, but feel like I missed a lot helpful instruction had I stayed. It’s a love/hate relationship with COVID.
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Hi all,
Haven't posted in this thread for a bit. I have been posting in the Taxotere & Cytoxan thread.
I am on day 11 after first round and happy to have moved into the relief days. As for the vitamin conversation, my doc told me to stop taking C, and fish oil. They approved me taking D3, B-complex, magnesium glycinate, and a probiotic. You have to be careful because many vitamin supplements have high doses of C added and don't show that on the front of the label.
Angela, sorry your had such a scare with the steroids. That would have freaked me out. Hopefully they will be making adjustments for you next round so you can avoid that.
Paula, have a big box of tissues handy when your husband is shaving your head. It may be one of those emotional moments. I am actually doing the cold cap. But it is a pain in the ass. I can not use any product, color my hair, blow dry, flat iron, wear hats, hair ties or wigs. I am barely allowed to brush it. My hair looks horrible all the time. Crazy curls that go in the wrong direction, big gray roots and frizzy. Plus the 4 hour infusion days turn into 8 hour days. I have definitely had second thoughts about the hair path I took.
Judy, thanks for the links. I am going to read through and make sure I am doing these vitamins right. I want the extra boost that vitamins may give me now. Especially when it is hard to eat right. But, I don't want to take anything that counteracts the effectiveness of the chemotherapy.
KeepingCalm, my doctor's PA did tell me to just skip the vitamins and get all my vitamins from my food. But that is not happening. Unless I can get all my vitamins from peanut better and jelly sandwiches.
PJAL, I am with you on the love/hate with COVID shelter in place rules. The whole world is being extra careful right now to keep us safe from exposure to bugs.
XO
Suzy0 -
Just read one of those articles and it said this...
"People taking vitamin B12 both before chemotherapy and during chemotherapy were 83% more likely to have a recurrence and about twice as likely to die."Sh!t!!
So, my B-Complex will be taken no more.0 -
I saw that, too, suz_eee, and freaked out a bit since my B-12 tends to dip. (Welcome back, btw. I was looking at the roll call and hoping you were hanging in there.) There is just SO much that isn't known about any of this, or that hasn't been confirmed in studies, or where various studies give opposite results-- which is why any two of us on the same therapy can be given conflicting info from our docs. So, do talk to your care team first.
Here is another helpful resource, from Sloan Kettering: https://www.mskcc.org/cancer-care/diagnosis-treatment/symptom-management/integrative-medicine/herbs. If you go down to the bottom of the page, there is a search/index, where you can look up various vitamins, as well as herbs and supplements.
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Suzy-Glad you're back. I was hoping all was ok. Anyone tried acupuncture? It has peaked my interest. I contacted an acupuncturist today and it sounded great, but doesn't everything?! I sent an email to my MO to see if it is something she recommends. I am sure she is tired of receiving my emails, but again, with COVID situation, just not receiving a lot of information on the do's and don'ts.
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Paula: Would LOVE to try acupuncture, but everything is closed here :-(
I believe there is good clinical evidence that it helps many people with side effects. If I could arrange it, I would in a heartbeat.
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Hello Ladies! I hope you are all having a good weekend so far and that those of you that had your first rounds are feeling okay. My oncologist told me no Vitamin C or any kind of antioxidants during the chemo, but that I could continue my vitamin D prescription. I'm thankful for that since mine is incredibly low! Scary about the B-12....
My metabolic panel came back in normal ranges, ALT is still a bit high, but dropped dramatically in the last two weeks, so she has cleared me to start the chemo next week. Hopefully, they will call me tomorrow to schedule it. The sooner we start, the sooner we finish right? I want to go home! My son turned 13 yesterday and I wasn't there for it, which makes me sad. Luckily he is a trooper and puts on a strong face for me. His sister baked cupcakes and my husband decorated the house. We got all 5 kids on Facetime together to sing Happy Birthday, which was nice!
Suzy- Thanks for sharing your cold-capping experience. I am debating it and not sure if it is worth the extra hassle, but I really LOVE my hair and don't know if I have the psychological strength to lose it. I commend all these brave women who are cutting their own hair or letting their loved ones do it!
All the best to you all and thanks for sharing your experiences! Have a great night
. Cheers,
Sabrina
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Hi ladies,
I'm totally new here.. and very scared. I'll probably be one of the last ones for May chemo as right now I'm scheduled for the 29th. Thank you for having the May group. It has really helped me more than you know. To give you some headsup, I'm more on the quiet side, so I tend to do allot more listening than talking. My MO was concerned of possible depression, so she recommended I join a group so I don't feel so alone. All your tips have given me much needed strength, so I decided to leave a note here. I'm doing echo tomorrow, then have to figure out how to do Genetic testing as I was so nervous, I totally messed up on the home mail-in saliva test, aaarggh, and no one from the team is at the clinic due to covid so while I'm at the clinic I'll be asking someone to just take my blood, and pet/ct scan on Wednesday then chemo teach on Thursday. On a side note, I have 2 girls, 14 and 15 and my college sweetheart "very macho" husband. Just told my family this weekend.. I guess I can't hide this forever.. Aarrrr.. I know, what the hell was I thinking? I just couldn't bare to worry them. But now I gotta come out of my shell and think of me and fight this thing. Even though I'm just getting started, I hope I can still be part of this group. Thank you for all your great tips and stories. Hugs.
Oh yeah..to add to that supplement thing.. My MO told me no to all.
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Welcome Cali argh,
Glad you’re here! No one wants to be here that’s for sure but I think you’ll find a lot of support from the women on here. It will be interesting to hear how others feel but I’ve been kind of in the middle in terms of how much I talk about this with people in person. But, I’ve come to realize that people really do care and want to help so I’ve been a little more open recently and people come out of the woodwork to offer meals etc. which has been really supportive especially with kids at home (mine are younger than yours but no matter what age that’s demanding).
Do stay in touch
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Hi, Cali_aargh. We're the club that no one wants to join, but we are glad that you found us and that it's bringing some comfort. We all process in a different way, so don't beat yourself up for not telling your family before you were ready. That's a really hard thing to do and your diagnosis is still so new. I'm pretty introverted myself and letting people know and help has been tough for me, but like KeepingCalm says, people want to be supportive. You can consider it a kindness to them to let them help you! (And if they are busy doing something productive, then that gives you more time to put your energy on your healing instead of managing their good intentions.) I connected with one of the therapists at our cancer center and it has been beyond helpful, even if it's all been by phone and telemedicine. There are so many unique experiences that go with this diagnosis and he's really been able to give me some very welcome reassurance and perspective. Don't know if that's right for your or a possibility, but just wanted to let you know that it's something that might be helpful. Hang in there. You are not alone!
--Judy
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Hi, This is my first post for this group. I had a bilateral mastectomy on April 23 and they found a tumor in the opposite breast so I am now doing chemo. My surgery was originally only for DCIS in the right breast. This is my second time around for chemo. I did AC + Taxol in 2017, which luckily I had no issues with. This time I am doing TC – still to be decided whether it will be 4 or 6 cycles. They think my tumor is a new primary and not a recurrence as it was found in a different area of my breast.
I was scheduled for DIEP but that was canceled because of Covid-19, so I had TEs put in instead. I am still planning on doing DIEP.
Starting chemo on May 21. I joined the chemo group back in 2017 and found it really helpful!
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Hi all,
Welcome Cali_arrgh (love that screen name) & Roxigirl!
Cali_arrgh, I think the anxiety of the unknown as you wait for this to begin is almost as hard as the treatment. I was having so much anxiety about everything. Now that I have been through one round the anxiety is almost gone. It was not fun. But it was doable. You can get through it. In my case, I now know I will be sick for about 7-8 days, and then relief begins. I am trying to think of it as a bad flu (that I have to have 4 times). I am also doing several of the recommendations I found here religiously. Especially water, water, and more water. I started practicing at getting 80 ounces a day down in the weeks before. Also, just come here for help and info. Don't google stuff. That leads right to worst case scenario and that just feeds the anxiety.
As for acupuncture, my hospital has this wonderful affiliation with a alternative (complimentary) medicine organization. They offer, free acupuncture, massage, nutritional guidance, and much more for women in our situation. All closed because of COVID. Ugh!
Day 12 and feeling pretty good.
XO
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Welcome Roxiegirl and Cali aargh! I'm sorry you have to be here, but I know that you will find this group really beneficial. I have learned so much from these wonderful ladies
. I'm also starting my chemo soon, so I'm a late May start too.Cali--I understand your concerns about talking to your family about your diagnosis/treatment. I really didn't want to worry my kids either, but had no choice since I had to leave them back in Belgium to come here for treatment. It was very difficult, but they listened and asked lots of questions, which I made sure I would be able to answer. There is a wealth of information on the breastcancer.org page and here https://www.cancer.org/treatment/children-and-cancer/when-a-family-member-has-cancer/dealing-with-diagnosis.html. We called a "family meeting", turned off all electronics, and had an honest talk. My situation was slightly different because my husband actually knew my diagnosis before me (yes it's true--the doctor called him to see if he could come to the office and take me home after the biopsy. Crazy right??). I think your daughters are old enough to understand that this will be a difficult journey for you and I'm sure they will be worried, but also very supportive. My 17 year old has really stepped up back at home and is taking on my role there, cooking for her father and brother and maintaining the house. I'm sure your "macho" husband will put up a strong front
. Mine doesn't ever let me see him worry, but I know he does. Shortly after arriving in the DC area, I blasted it on FB because so many people were asking why I was stateside and it became exhausting trying to explain to everyone individually. The outpouring of support from my friends, family, and colleagues around the world has been AMAZING! I receive daily check ins via Messenger from many people and it really keeps me going. My insurance company has offered me free access to therapists but I haven't yet reached out to them. Maybe your company has a similar option? Talking about this nightmare really helps me . Roxiegirl-- I am also hoping to have a DIEP when I am able. I only had a left mastectomy, but I wish I had a bilateral. No one ever suggested it to me and it never occurred to me to ask about one. I was so upset about losing one breast, I never even considered giving up both. I asked my PS last week about combining my DIEP with a prophylactic right mastectomy and she said it could absolutely be done. This TE feels like a brick on my chest and I'll be happy to have it out. I can't imagine having two of them! Hoping to start my 4 rounds of TC this week or next. Waiting for the call to schedule it driving me crazy...lol.
Cheers,
Sabrina
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Hi Sabrina,
Thanks for the reply! With the TEs my PS said I didn't need them and there could be complications, but my BS thought it would be nice for me to have them as with Covid it could be 6-12 mths before my DIEP. I think now my DIEP will be in the Fall, but I went with my BS's recommendation as she is a breast cancer survivor. As I am now having chemo and I hardly go out the house, I think I probably could have done without the TEs, but there are always so many decisions to make!
If you do decide on a bilateral mastectomy you can always have the DIEP done on both at the same time. I'm also looking forward to getting started on the chemo.
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Roxiegirll, sorry to hear this is a recurrence and second time getting chemo. I hope this time it's gone for good! Did you look into genetic testing? I had tumors on both sides, a little different of a scenario than yours, but they tested for gene mutations and discovered I had chek2 mutation, for me it feels like it explains alot. Good and reassuring to hear you you had no issues with the first chemo experience. I kind of agree with your BS, emotionally I would think having 'something' there would be better than nothing if you have to wait.
Sabbymama, it must be so difficult to be away from your family, all of you worrying about one another. Very comforting though that you've had such an outpouring of support. At first I was alarmed reading that your husband knew before you when there are so many privacy/confidentiality laws everywhere, but it sounds like an act of kindness from your doctor and the human side of him did the right thing which is nice to hear.
My chemo was bumped to Friday, feeling prepared, having moments of feeling emotional about it too-going into the 'unknown' no matter how much you know.
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Welcome Roxiegirl and Cali-aargh. It is a really scary time, but I know we can do this! I don't really think anyone ever wants to be here, but I am so glad we are here to help support each other.
Sabrina - Like you, I had a right mastectomy only. I was thinking that I wanted a bi-lateral with the DEIP, but the pandemic was ramping up, so I decided to have a unilateral without an expander because the next part was considered elective and no telling when that would happen. I think it was less traumatic for me that I had a unilateral since I wasn't having the expander placed. I am going to have a conversation about this topic once I am finished treatment and things have calmed down a bit. Have you decided if you are going to try the cold-capping? From what I understand, it really works. Are you with friends and/or family in the States? I am also in the DC area. It must be tough for you to be so far away from your family.
My next treatment is Thursday, same day as Roxiegirl. I have treatment once a week I now have a rash on my forearm and my calf muscle and a few spots between my fingers. It could be the Colace. I have never used anything like this, but had to. It did nothing really for me, so I won't be taking that again. Not sure if a rash after chemo several days later is the culprit. I saw that Angela had a rash and was told to take Benadryl. (Thanks for posting that - Angela). I took a regular Claritin since Benadryl knocked me for a loop during my last treatment and I do not want to feel like that again. It seems to have helped a little.
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Roxiegirl: Thank you for joining us. I hate that you have to be with us for a new primary, though. That's news nobody wants to receive.
Sabrina: What an added stress not to be with your family at this time. They love you very, very much to be stepping up this way so that you can get the treatment you need here in the States. Thank goodness for the technologies we have now for staying in touch.
Paula: I'm sorry your side effect adventure continues and hope that you are starting to feel better. I've tried everything I can think of not to use the Colace, but it's only going to be a matter of time. Prunes are now my best friend.
Infusion 2 is tomorrow, bright and early. Only Taxol this time -- no Herceptin (or "Herceptin") for another two weeks, so maybe time to straighten out the biosimilar stuff. And for those posting above about hair--right there with you. I keep looking in the mirror and picturing a week or so from now. That doesn't sound unhealthy at all, does it?
--Judy
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Snowflake22 – I have had two lots of genetic testing and came back negative both times. My BS does believe there is probably some genetic explanation for why I have had so many recurrences. May be in the future I will test positive for some gene. Now that I have had the mastectomy I feel that will lower my risk a great deal.
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Judy- will be thinking of you tomorrow. Let me know what happens with Herceptin.
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Nothing to report from today's infusion, and that's fine. I didn't see my MO today, but expect that we'll sort out the Herceptin/Ogivri question via phone or email over the next two weeks, before the next dose is due.
Every time my feet or hands fall asleep, I panic. Slamming water and trying to come to terms with the fact that my hair's days are numbered--and that the number, whatever it is, keeps growing smaller and smaller.
How is everybody holding up?
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BTW - I started a thread to seek info about Herceptin biosimilars. The forum mods thought perhaps they could consider doing an article or some such to address some of the questions we all seem to have. If you think that would be helpful, or if you have additional questions to the ones I've listed, maybe you could post a note over in that thread: https://community.breastcancer.org/forum/80/topics/876380?page=1#idx_6 (The Ogivri must be doing something b/c my nose has been running all week.)
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Judy- thank you for thinking about starting the herceptin thread. Were you originally supposed to stay on it for 12 weeks thru chemo and then stay on for the remainder of the year? You’re 2 in! I have my second on Thursday. Hoping this rash I developed doesn’t delay things. I’ll check out new thread
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Paula - Yes, that's the plan for Herceptin. It's every 3 weeks for a full year. The first three months are concurrent with the weekly Taxol. So the first infusion was both of them; this one and next one are Taxol only; the one after that will be both again. Lather, rinse, repeat. THere will also be a month where it's concurrent with radiation.
In reading around, it looks like the patent on Herceptin expired last year, which is maybe why we are seeing so many people now with questions about the biosimilars. (Although it does look like the biosimilars have been used in Europe for some time.) So many questions.
Good luck on Thursday!
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