Starting Chemo May 2020
Comments
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I was told today by my ONC MD that he recommends TC for 4 cycles. I had a DMX on 4/3 with negative nodes. My oncotyping was inconclusive bc my tumor is ER- (it is PR+). He said bc of my age is why he is recommending tx and also bc of not having the oncotyping score to help recommend against it. He said if I were in my 60s he would most likely not be recommending chemo. I am very afraid of chemo ( SE and long term effects) and am having a hard time deciding if it is right for me. If I do decide to go forward, I will start 5/15.
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Thank you ladies so much for all this amazing information! I know that everything I am learning here will be very beneficial moving forward and being prepared helps remove some of the stress. I'm feeling a bit frustrated today as I was told that I would have heard about my Oncotype results "by May 8th" and that did not happen. My oncologist is waiting for those results to decide on my course of treatment and I hope this doesn't delay things. Reading all of your posts is helping me mentally prepare and I thank you all for sharing your experiences!
Cheers,
Sabrina (temporarily in Rosslyn, VA)
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Hi Sabrina,
I had the same long delay for test results. It was really frustrating. Took over a month to get them all in. In the end, though, waiting for the tests was totally worth it. It changed the DX completely. The first FISH test from the biopsy was positive. The second FISH from the mastectomy tissue was a resounding negative.(!!) Because of the HER2+ first DX, they didn’t order an OncoType right away, so it didn’t happen until my oncologist found my situation fuzzy because I didn’t have any lymph nodes to test. (Surgery 21 years ago removed them all on the cancer site). So he did the Oncotype to clarify things. In the end, instead of a year on herceptin etc plus who knows what else, I’m doing 4 rounds of TC and then however many years on hormone therapy. I tried to look at the time when I wasn’t having chemo yet as my chemo reprieve (sometimes it even worked!). I felt good. Had healed from surgery. The port was healed up. My hair was still on my head. Whoo Hoo! Enjoy!
Nan
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Wow Nan! What a journey you have had. I love to try and find the positive angle in things and this helps
. Best wishes! Cheers,
Sabrina
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Hello, my patient navigator sent me an article today regarding icing hands and feet during chemo so I thought I’d share.
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Happy Mother's Day to all the Moms in the group! Whether your babies are still little, all grown up, or of the furry variety, I hope you all had an enjoyable day together full of love and good vibes
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Cheers,Sabrina
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Hi, just checking in. So my port was implanted this morning and it was not as bad as I thought. I was 95% out (I remember nothing, but it's not considered "general anesthesia" unless you're 100% out) so that already alleviated most of my fear. No pain (yet) where the port is but the incision near my collarbone is tender and makes that whole side of my neck hurt. I also have some throat pain from the breathing tube. It's like when you're getting sick and your lymph nodes are swollen so it hurts to swallow. It's feeling better since this morning so hopefully that will resolve completely by tomorrow.
I canceled my chemo teaching appointment that was supposed to be today but I think I might ask them to do it anyway. I just want to be fully prepared for Friday.
Got my knitted knockers in the mail today, which made me tear up with gratitude. I ordered a new wig and the baseball cap type as well. Getting a pixie/bob cut with undercut on Wednesday (at a friend’s house) so I guess I’m ready. Just keep moving forward and we’ll get through it, right?
And belated Happy Mother’s Day to those that celebrate it. Mine was actually pretty great considering I started my day with Covid testing.
Angela
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I'm glad to hear you had a nice Mother's Day and that the port placement wasn't too terrible for you Angela. Thanks for sharing your experience! I hope the rest of the week goes well!
Cheers,
Sabrina
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Angela-I also got the baseball hat wig and it came in today-so cute I just love it! Also, is covid testing standard before each chemo session? I had it the day before surgery.
Just got my chemo date which is next week and after so much waiting I am really wanting to get it started and get on with it.
Something I've been torn on-I just got off the phone with mom who has wanted me to live at her place to reduce covid risk seeing seeing as I live with my son and his girlfriend who works. I have decided I really want to be in my own home for this. They have been otherwise social distancing and four months is a long time to not be in your own home. It was a tough decision because it would also be nice to have her company and care-she's a great cook too.
Thanks to the advice from the April group, I have started the glutamine and milk of magnesia is ready to go.
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Reporting back from today. One down, 11 to go before graduating to a month of radiation and another 9 of Herceptin alone. It was a long day with a lot of waiting, but now at least the unknown is more known and a bit less scary. COVID-19 is making everything complicated and definitely adding another layer of complexity and anxiety to everything.
I am trying to ice hands and feet, roughly following method in this video: -- except am also making a large pad/small pad sandwich for my hands using the wrap bands that are on the Cryomax pads. I think I need something to hold it in place a bit more snugly next time and close the gaps around the edges. I feel fortunate that everyone from my oncologist to her nurse navigator to the pharmacist to the oncology nurses is familiar with and supportive of icing, but it is still very much a DIY project. Wish there were a way to change that!
Now am just sitting around staring into space because I'm pooped from the long day, waiting/wondering if and when side effects will hit. Biggest issue at this very moment is that the port, which was placed on Friday, still feels extremely weird on my collarbone and in my neck. Several of the nurses I spoke with today said it gets better once it's healed and that you tend to get used to it within about 2 weeks. But, yuck.
Next up looks to be Paula (PJAL) on Thursday. Good luck to you and to everyone in our Magnificent May cohort.
--Judy
ETA: @ByHisGraceTwice -- I found out when I was already receiving the herceptin that it was a "biosimilar." Thought of your post and had a minor panic attack because I had forgotten to ask. But that's what the insurance is covering. Infusion part went fine...
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I had my port placed last Thursday and it's getting a little better. Still stings and feels strange. I bought hats, wigs and received the therapy gloves and socks as instructed by the nurse navigator. I am a little frustrated because I have been emailing about L-Glutamine - when and if I should begin taking it. I have done some research, but still on the fence about it. I am not having my chemo tutorial until the day of which is Thursday and I want to be as prepared as I can, but nurse said it was too much to go over in an email. My appointment with nurse is at 8:30 and first treatment begins at 2:45. Still nervous about it all and the port since it still hurts a bit. They did give me the advice about the therapy gloves and socks in advance for which I'm thankful because they had to be ordered. I had to have COVID testing before the port was placed. That test wasn't fun.
Judy- It looks like we are receiving the same chemo/Herceptin treatment. I have written down the Herceptin question and will ask this first. Thanks for reminding me about the post from ByHisGraceTwice. Thanks for sharing the video. I have an online video meeting on Friday afternoon so I am hoping I am able to attend without too much difficulty. Please keep us posted on how you're doing.
Thinking about all of us as we go through our treatments.
Paula
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Thanks so much for posting that video, Judy. I used ice at the infusion center the first time but of course they’d be glad to have me bring my own stuff and diy! I find myself feeling jealous of all these people who could bring someone with them to help!
Today is day 6 post 1st TC infusion. I’m happy to report that while certainly not perfect I am feeling noticeably better. Ironically some of that may be due to no longer taking the Zofran etc. It’s hard to tell what side effects are from what. I’m definitely still experiencing some joint achiness, particularly having been on my feet quite a bit today with my little ones,but this definitely puts me in a better frame of mind from a few days ago.
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UnrealTarheel — I’m grateful you did so well with the biosimilar. Thank you for posting the video about the hand/feet icing. KeepingCalm — seeing the helpers in the video, I had mixed feelings. Happy for the person in the video was able to have helpers; sad for us in today’s Cvirus world who are doing it ourselves.
I’m trying to figure out how to do feet in a way, I can get up and go to the restroom. I don’t think I could walk safely with my feet wrapped in ace bandages with the ice cube CyroMax pads. I’m thinking I might try plastic food wrap instead of ace bandages. If I need to go to the restroom, I could use scissors to cut the plastic wrap, remove the ice pads, and redo after. The ice bags on the hands should be easy to shift to drink something. I’ve forgotten, is it recommended we keep ice in our mouths during Taxol like we do on hands/feet?
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j
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So glad you are starting to feel better, @KeepingCalm! "Noticeably better" is GOOD!!
@PJAL: I wouldn't expect a lot of clarity around L-Glutamine. Both the medical oncologist and the oncology pharmacist told me specifically that there are no randomized studies indicating the effectiveness of any supplements for chemotherapy-induced peripheral neuropathy. Being a librarian, I had to go look it up, and that does, in fact, seem to be the case. Here is one recent review of complementary treatments for CIPN: https://link.springer.com/article/10.1007/s11912-0... ("The CIM modalities acupuncture, classical massage, omega-3 fatty acids and the Japanese Kampo medicine Goshanjishen may be of benefit in preventing or treating CIPN. Vitamin E (alpha-tocopherol), glutamine/glutamate, alpha-lipoic acid, and acetyl-l-carnitine (ALCAR) are not, with ALCAR increasing symptom severity and vitamin E the risk for developing prostate cancer.")
That said, I did some follow-up with the pharmacist who did advise that L-glutamine at least would not be harmful or reduce the effectiveness of hte chemo meds, and the other pharmacist in the unit acknowledged that simply feeling like you are doing something can have value in itself. (Placebo effect? I'll take it!) (ETA: actually, my real belief is not that these things are all placebos, but that there is a great deal western medicine doesn’t necessarily understand or hasn’t sought to. Bodies are complicated. Cancer is complicated. Nature is complicated. We’re all left doing the best we can.
If you poke around the search function of this discussion board, especially the Weekly Taxol thread, you'll find some "recipes" such as this one by PatinMN, March 21, 2020: https://community.breastcancer.org/forum/69/topics.... I think you'll also find folks who specifically were told NOT to use this or other supplements, so you'll need to do your own research and consult your care team. UNC has made a conversation with the pharmacist part of the preparation for chemo and it's been really, really valuable. If it's not offered as part of the standard prep for you, perhaps you could request? They are steeped in this stuff and are often an underutilized resource.
Judy
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@ByHisGraceTwice: IKWYM about having a helper. I was able to bandage up my feet myself but just barely. The Taxol infusion was 1 hour for me + 15 minutes on either side. Even though I went to the restroom shortly before, I bolted again as soon as the time was up. Have you looked into the NatraCare booties? I don't think they get as cold, but I believe I've seen where many people are using them successfully: https://natracure.com/collections/active-lifestyle... (You could probably slip a pair on your hands, too.)
I was told (MO and pharmacist again) that mouth sores aren't a real common side effect from Taxol. They recommended 2X/day salt and water rinse to prevent--and I'm working with an Ayurvedic practitioner who recommends adding turmeric to the solution. But I do see on these boards that some people have had issues with mouth sores, and also success with the ice in the mouth. Sounds like it's in the category of "certainly can't hurt" if you don't mind the cold mouth.
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UnrealTarheel — the recipe my MO gave was 1/2 teaspoon salt, 1 teaspoon baking soda, and 1 quart water. Four times a day. How much turmeric did your Ayurvedic practitioner recommend be put in the mouth rinse?
Did you get any premeds before the Taxol? How are you feeling tonight, any side effects from today's infusions?
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j
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ByHisGraceTwice: No recipe for the mouth rinse—just some warm water, some salt, some turmeric. It's probably pretty forgiving, but may turn your sink yellow. Will try tomorrow.
yes on the premeds—some Benadryl, which made me a little sleepy and lightheaded partway in, but not bad; a steroid, which I think is contributing to my feeling awake right now, but not really wired in the unpleasant steroid sense; and something for nausea. The names are all downstairs, but I can check in the a.m. if helpful. I was really expecting the day to be awful, but mostly it was just long.
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Update with medication names: The steroid was Decadron and the anti-nausea was actually Pepcid (i.v. formulation).
PJAL: The biosimilar for the Herceptin was Ogivri (listed as trastuzumab-dkst). You may not have a lot of choice about that. I was told that my insurance would cover the biosimilar, but not the original Herceptin. Presumably if I had (or have in the coming days) a bad reaction, then I could work with my doctor to appeal the insurance decision and advocate for a change to another similar or to Herceptin. It would have been nice to know that in advance, but it probably wouldn't have changed anything. Good luck to you!
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Wishing strength and good luck, sending support, to these sisters about to begin the chemo journey tomorrow and Friday:
- PJAL (Paula) - [Maryland, USA] - 5/14
- AngelanotAngie (Angela) - [California, USA] - 5/15
- Arizonasurvivor42 () - [Arizona, USA] - 5/15
Hope all goes just as well as it can for each of you!0 -
UnrealTarHeel, thank you for your words of encouragement. How are you feeling? Wanted to let you know that I received a call from the scheduling nurse today and she asked if I had any questions. I asked about the Herceptin and she said it was Kanjinti and not Herceptin, but she kept calling it Herceptin. She said it cost less than Herceptin. She said compare it to Tylenol and a store brand name of acetaminophen. I called my insurance company and they do cover Herceptin and I wrote to my oncologist and asked them not to give me Kanjinti and would like Herceptin instead. I will ask again tomorrow when I have my tutorial before I start treatment, but I am prepared to leave if I don't get a clear explanation and why this is more beneficial than Herceptin. When you asked, did they give you any explanation? Am I overthinking this? Kanjinti was FDA approved in June of 2019. It was in clinical trial from 2013 to 2016. After the phone call and I calmed a bit, someone said to me "who knows, it could be better than Herceptin". I am freaking a bit tonight. I want to trust the doctors, but a little hesitant. I will let you know how things go tomorrow.
Paula
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Good luck tomorrow Ladies! I hope you are able to get through to them Paula! If you can get the Herceptin covered, why would they even need to switch?? That is very frustrating and they should accommodate your wishes. Big hugs and warm wishes to you all
. I'll be thinking of you all tomorrow!Cheers,
Sabrina
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Cut my hair today. Cried a bit. Today is our twenty year anniversary too so between that, my hair, healing from the port and then chemo on Friday I’m kind of a mess. Well I’m strong on the outside anyway. Looking forward to getting the first one over with so I can stop being anxious! Good luck Paula and Arizonasurvivor42! 0 -
You look tough, Angela -- just like someone that cancer better not mess with! I hope you are able to find some joy in your anniversary, even in the midst of all this mess. 20 years is a real milestone. Congratulations!
Paula -- I had a long talk with the pharmacist and am putting some faith in her and in my oncologist, who is clearly super smart and seems to leave no stone unturned. Maybe I'm not being skeptical enough! If you have any doubts or unanswered questions, never forget that this is your body and your medical care, and you have the absolute right to have questions answered to your satisfaction before proceeding. You'll be more at ease with your treatment, and that can only help.
I'm feeling a little blah this evening--not nauseated, but just kind of a floppy tummy, and super tired. If I hadn't just had chemo, I wouldn't give it a second thought, but right now, I'm on hyper-alert to everything, which I'm assured is 100% normal. Good luck tomorrow. I hope you'll all report back.
Judy
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Angela- Happy 20th Anniversary! Your hair style looks great.
I told my 11 and 15 year old daughters that they could cut my hair in a short bob in a couple weeks when it starts falling out. I'm sure they will butcher it but I would love to find some humor in my hair loss. I made it out to the wig shop today and was really disappointed with the options. Wigs were either itchy and thin or decent but extremely expensive. I couldn't find one wig that I felt somewhat myself in. I'm going to try another shop tomorrow and hopefully have better luck.
I start the steroids tomorrow to prepare for first cycle of TC on Friday. Tonight feels like my last hoorah!
Best of luck tomorrow, Paula. And Angela on your Friday treatment, I will be thinking of you both.
-Christie
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This morning I learned that my oncologist is recommending a course of 4 TC doses and I am relieved. Thankfully my Oncotype came back at 12, so she's ordered the shorter course. She's ordered some more blood tests for tomorrow and says we should be able to start my first chemo late next week or the following week. I'm still not sure if a port will be required, but I'm hoping to avoid it. The doc says the nurses will basically make that decision? Sounds odd to me, but this whole experience hasn't made a whole lot of sense.
The PS added more solution to my tissue expander today and I feel like there is a brick on my chest! It also stings a bit near the port, which I hope isn't a problem. Overall, feeling more positive today. Thinking of you all and wishing you strength and sending big hugs!Cheers,
Sabrina
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It was a rough night last night. I walked in to my appointment today with the oncology nurse armed and ready with some information about Biosimilars. She said that they were checking into my request, but they had to jump through a lot of hoops, didn't know if my insurance would cover it and didn't know if they even had it anymore. She told me we may have to postpone to get it in. She asked me why and I told her my reasons. She told me that "this hospital has some of the best researchers in the world, right here and they would not give any of their patients anything that was unsafe". She said she would give this her daughter, mother and herself. She said it's a lot cheaper too. I continued to try and give her my reasons and she said she didn't want to argue with me about it. I didn't think I was being confrontational, but she asked. Then I felt guilty and felt like a spoiled little brat to make everyone "jump through hoops." She lightened up by the end and told me everything was approved, they had it in and I would be receiving the real Herceptin today. Of course, I thanked her.
I went to infusion room. Accessed my port and it hurt. She said I didn't put enough numbing cream on. She said that pain would get better. Received the Herceptin plus Taxol. I feel fine right now. I know it's early and waiting to have some side effects. She did 90 minutes of Herceptin first with a bunch of pre-meds steroids and anti-nausea meds. After that was complete, I got more meds - a heavy dose of Benadryl. (I did not like that). I was restless and wanted to move around, but couldn't. She said most people just fall asleep. Since it seemed that I tolerated the Taxol, so she said she will request that the Benadryl be given next week at a lower dose. I did ice my hands and feet. Everything went well. I think the worst part for me was the port access and Benadryl, but all ok and temporary.
Angela- Love the hair. You will rock any way you decide to wear it. I know it's so emotional. I hope you had a fantastic anniversary. I hope you can celebrate properly after all of this is over. I can't wait to see how Christie's daughters shape up her hair. That's great.
Angela and Christie, will be thinking about you tomorrow. If you're up to it, let us know how it went.
How is everyone else who had treatment earlier doing? Feeling ok?
Paula
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Nice work, Paula! Congrats on getting the answers you needed and the result you wanted. Your pushing on the biosimilar has made me start looking around more and I am going to message my oncologist. (Can I ask what you said, exactly?) It's really hard and exhausting to have to be so alert and advocate for yourself around every little thing. None of us wants to be "that patient," but sometimes you need to be. I was told my 2nd dose of Herceptin (or "Herceptin") will only be 30 minutes. Hopefully true for you, too.
I felt kind of blah last night and had a hard time getting going today, but largely ok. Every time something feels off, I find myself wondering if it's just normal or if it's the meds. I'm still finding the port really weird and uncomfortable.
--Judy
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Paula---Good for you for being strong! You should never feel guilty for holding strong to your beliefs, especially when it comes to your health and treatment plan! I'm glad things went okay and you got the meds you wanted. Hopefully the port will feel better and the lower dose of Benadryl will make your next session more comfortable. Sleep well
. Cheers,
Sabrina
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Hey Judy, Yes, the next Herceptin will only be 30 minutes and then the Taxol again. I felt guilty because what she was saying made sense, but I thought I made sense too. I felt bad for everyone having to make changes "jump through hoops at the last minute" on my behalf. It was the nurse oncologist and she was defending her hospital and the researchers in it which I can't blame her for. She was convincing. She specifically said "this drug is Herceptin! It's like taking Tylenol or the store brand of Acetaminophen which is the main ingredient in Tylenol. It works the same way." I did not like the comment about it being much cheaper. I am glad that I received the original Herceptin because it was important to me. I talked to my Husband about it and he said, it was basically the same and he would have had no question about taking the drug. The doctors who created this are smart people. This type of stuff doesn't bother him, but it bothers me. If you message your oncologist, let me know what is said. My port is still bothering me a lot. She said by next week, it should be ok.
Sabrina, Thank you for your words of encouragement.
Paula
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Paula, I'm very proud of you for standing your ground today.
The FDA did not approve Kanjinti or any of the other biosimilars to Herceptin as interchangeable. They are not generics like acetaminophen is to brand name Tylenol. Many of the nurses and insurance clerks don't know the legal difference in the terminology. Generics use essentially the same recipe as the original. Biosimilars don't because they are made with different living organisms and are reverse engineered. Some of the doctors don't know the legal difference (or scientific significance.) Many don't independently research. They listen to and read the information provided by pharmaceutical representatives. Not an excuse, but one reason is the practice of medicine today is overwhelming in the amount of info and new developments.
Not being interchangeable does not mean the biosimilars don't work, that's part of the the problem. They are so newly FDA approved (Kanjinti in June 2019, I think) there isn't a history of years of clinical trials and in real life use in patients to prove they work the same as for Herceptin.The FDA approval is for being close enough in how Herceptin is made, not in how it works on the cancer cells in a patient's body. There's a lawsuit between the maker of Herceptin, Genentech, and the maker of Kanjinti.
Some oncologists aren't using biosimilars at all.... And for you to be the problem — no way. If they'd properly informed you instead of you having to push for information and defend your rights as a patient nothing would have been last minute.
It's all about money. Nothing wrong with saving money when appropriate but cutting corners without fully informing patients and getting informed consent from patients is wrong.
Here's a link to an article about the Genentech lawsuit against the makers of Kanjinti. Google to find more current info about the lawsuit which still is ongoing.
Here's link to presentations by four experts about biosimilars:
https://www.examinebiosimilars.com/
Here's an FDA data sheet on Herceptin. (Page 2 — it's made from Chinese hamster ovary protein.)
https://www.accessdata.fda.gov/drugsatfda_docs/label/2002/trasgen082802LB.pdf
Hope you're feeling ok tonight, Paula, and your side effects from Herceptin and Taxol aren't too tough. Tuesday night I'll be just like you are tonight. I'll have my second “real" Herceptin and my first Taxol infusion.
I'm proud of you.
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j
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Sabrina that is great news! I know you have been waiting a long time for those results.
Paula- sorry you had such a tough time but it must have felt great in the end that it worked out. This is why we spend hours online researching all of these crazy treatments we are going through so we can protect ourselves and hopefully help others along the way.
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