Topic: Starting Chemo May 2020

May 16, 2020 07:21AM Arizonasurvivor42 wrote:

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!

May 16, 2020 12:07PM - edited May 16, 2020 10:17PM by Angelanotangie

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

May 16, 2020 02:34PM - edited May 16, 2020 02:35PM by UnrealTarHeel

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

May 17, 2020 02:25AM PJAL wrote:

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.

May 17, 2020 08:41AM suz_eee wrote:

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.

May 17, 2020 10:18AM PJAL wrote:

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.

May 17, 2020 04:27PM Sabbymama wrote:

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

May 18, 2020 04:12AM KeepingCalm wrote:

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

May 18, 2020 08:08AM Roxiegirl wrote:

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!

May 18, 2020 09:03AM Sabbymama wrote:

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

May 18, 2020 11:25AM snowflake22 wrote:

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.

May 18, 2020 02:25PM UnrealTarHeel wrote:

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

May 18, 2020 08:30PM PJAL wrote:

Judy- will be thinking of you tomorrow. Let me know what happens with Herceptin.

May 19, 2020 01:05PM UnrealTarHeel wrote:

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: community.breastcancer.org/for... (The Ogivri must be doing something b/c my nose has been running all week.)

May 19, 2020 01:22PM UnrealTarHeel wrote:

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!