Can I delay Chemo/Herceptin for 7 months?
Hi everyone,
I would greatly appreciate your knowledge and opinions. Very new to this. I'm just had a large lumpectomy to remove a long milk duct full of DCIS and a 2.4cm tumor, ER-, PR- and HER2+ Positive. My lymph nodes were clear. So I am just past the borderline between Stage 1 and Stage 2 (Stage 1 cuts out at 2.0cm). I'm very confused, because no one mentioned anything about chemo until after my surgery and it was like a bad dream to go from the great news that I was "cancer free" with no spreading and they got clean margins.
I am learning that they are treating HER2+ Pos9tive with Herceptin and give that with Chemo. That there are some trials where it is more "mild" chemo drugs etc. I've met with the Radiation Doctor who pretty much told me Chemo first. Monday I meet with the medical Oncologist. Wednesday they want to do a small re-excision to clean up one area where the margins of DCIS was very tiny (5-10% recurrence...but its DCIS) and they could put the port in at the same time.
Here's my deal. I just started a new job in November. I have some leave but not very much. I went back to work after the surgery after a week off and have been very tired out. In November, I will qualify for FMLA leave - where I can take up to 12 weeks off and they keep my job and have to pay my insurance. I want to know if I can delay the chemo/Herceptin until then. I met a woman on the boards here with exactly what I've got who worked through her treatment.
I dunno...I just don't really get all the mixed messages, how if its confined to the breast they have a "100% cure" since it did not go to the lymph. Also that cancer spreads first to the lymph and then to the rest of the body. So if my lymph is clear, why the rush/stress panic about this? I was also told that I could delay my surgery without it impacting my outcome by 8 more weeks than we did. I was also told there was time to get a second opinion. But I feel like I've just gotten pushed into this cancer treatment mill and I have to keep going with it all NOW. The Radiation doctor said they'd like to start the chemo about 4 weeks from my re-excision, so that would put it to April 9th. That's only 7 months then I get the FMLA and take take a leave and take care of myself. Am I being reckless? Do they know?
Thanks - Annie
Comments
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Hi Annie!
Your cancer was HER2+ and Grade 3. Grade 3 cancers involve rapidly dividing cancer cells, and the over-expression of the HER2+ protein may very well be the culprit. Why the rush? Well, just because your lymph nodes are clear doesn't mean that you don't have cancer cells in your bloodstream and in your lymphatic system, moving all around your body, looking for a new home. Yes, it is true that such cells often initially make a new home in the axillary lymph nodes, but they can land anywhere and begin to form new tumors. Chemo + Herceptin is considered to be a systemic treatment, as it travels throughout the bloodstream and lymphatic system, killing the cancer cells therein.
I, personally, would not wait 7 months to get treatment. HER2+ cancer used to produce some of the worst outcomes. With Herceptin, it does not. Waiting 7 months might just allow the cancer cells in your system the time to set up shop elsewhere.
Have you considered trying to work through chemo? I did. I had my infusions on Wednesday. On Thursday and Friday, I'd be OK because of the "steroid high." I'd crash on Saturday and have a blah weekend. But, by Monday, I was feeling well enough to go back to work. Some ladies will save some of their sick days and plan to take them on the days they feel the worst.
Good luck!
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working through chemo is certainly an option. I worked all through chemo. Does your company have a short term disability plan? Often you can qualify for std without Fmla
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Being HER2+ also, I would not have been comfortable waiting 7 months for chemo. They knew I was HER2+ from the getgo, so I did chemo first and started 9 days after diagnosis. Was your HER2+ status determined only after surgery? If so, that is likely why you weren't hearing chemo beforehand but are now. I hope you can find a way to make it all work.
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THANKYOU so much! This totally helped me to decide to listen to the oncologist and walk through this without so much fear and loathing. Big appreciations! Will you come and check on me here on Monday J ? I see the MO and I'll post what he wants to do. I'm sure I'll be shook up.
Could you let me know more about how your regime worked? What was your cycle? How many rounds? How long total time with chemo and Herceptin? How much time just Herceptin? Anything you'd want to do different or that I should ask for?
ElaineTerese
Thank you. Somehow hearing this from you makes it more real and I am able to trust it. I am a problem with trusting doctors – childhood medical trauma – but they've saved my life before! I like the way you explained this to me and I think the doctors that discovered Herceptin should get the Nobel Prize.
You and the others who continued working through this are giving me the courage. HMmmmmm…like that about the steroid high…I could schedule a lot of my clients on those days…I get almost two days a month off but I have a bank of training days where I can use about 8 days to do on-line trainings at home. Maybe I'll copy your regime. Although the thought of loosing summer in the Northwest is sad…but then I have to re-think that…I can sleep on the beach or by the lake or in a hammock in my yard.
Tresjolie
Thank you for your response. You know what? I just started a new job and I didn't sign up for short term disability! DUMB DUMB DUMB. They didn't give us the price for it and I was really worried about our finances as I was off work for 4 months. I do have long term disability through the company but I think you have to be off for more than 3 months. Sounds like from all of your strength, I won't need that.
CassieCat
I appreciate the way you said that you would not be comfortable waiting 7 months…okay, I agree…yes, they did know my Her2+ positive status when I got my biopsy on January 11th. Of the 4 women with Her2+ positive that I've met on these boards, all of them started chemo right away. So I can see that I had my delay already!
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anniekaja11, I'll check back in next week to see your update. For me, there were difficult days every three weeks due to chemo, but there were also days that felt nearly normal, or at least normal enough. I started chemo late August and finished mid-December, and then I did Herceptin only every three weeks through the following August.
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Annie, you've gotten good advice, I think. While my profile and treatment plan are different than yours, I did work through chemo. I think timing the infusions on Wednesday (so that worse crash is on weekend) makes sense. One word of caution based on my experience, however: while I also had a steroid high that helped for the first few days after each infusion, I found that sometimes I was a little too 'high' to concentrate well on those days: and I tended to do more talking than listening. So, personally, if my work involved seeing clients I think I would have done better to see them in the days just *before* infusion rather than the days just after....Bottom line, however: everyone reacts differently so you will need to see how it goes for you.
And all of that said, I would not delay chemo that long.
Best of luck to you!
Octogirl
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Whew…I am glad to read the excellent advice you've been given, and glad that the ladies seem to have changed your mind about waiting for your chemo treatment. I would not have been comfortable waiting at all and would not recommend that to any HER2+ person, just for the same reasons Elaine gave.
I had six round of TCHP (every three weeks) then continued with Herceptin only to total one year. I usually had my infusion on a Friday, then spent the weekends taking it easy, Monday's would go in for a Neulasta shot THEN would feel bad Monday night and the next couple of days. Usually by Wednesday I was back to normal or almost! Never once did I get nauseous or throw up. I do work from home, and I know it's not the same as having to get dressed and out of the house…but I continued working throughout treatment. A couple of my clients that I deal with several times a week (calls or texting) never even knew what I was going thru.
Herceptin is "the game changer" for us that are HER2+! I'll be checking on you Monday also! --Lorie
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Since you have already had surgery it is less likely that you will receive Perjeta as it is usually given prior to surgery per FDA approval. It is possible that your MO will request that you receive Perjeta adjuvently, but that will depend on your insurance. You may receive Taxotere/Carboplatin/Herceptin, or Adriamycin/Cytoxan/Taxol/Herceptin. There are pros and cons for both regimens, particularly in light of being ER/PR- Since there is no other systemic treatment available like there is for ER+ patients, chemo becomes far more important for you. Your oncologist should explain the benefits to each combination for you. Wishing you the best.
Edited to add - I had infusions on Thursday - Friday was usually OK, Sat/Sun/Mon sub-par, but then rebounded. This got a bit harder as time went on but I also got better at managing my side effects.
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Hi there. I just finished my 3rd weekly Taxol and Herceptin. I'm working through and doing well. I do my treatments on Thursdays and that has worked well so far. The 1st 2x were Tuesdays and we're a little harder You can doit!.
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I was also HER2 + and I was able to work throughout my treatments. I received Taxol and Herceptin every Friday for 12 weeks. I felt great on Saturdays and I was able to all of the shopping, errands, and mom activities that I needed to do. I slept most of the day on Sundays. I was tired on Mondays, but I was able to work my full time job. I also worked throughout Radiation and now that I'm doing Herceptin only. It's a scary journey, but I wouldn't mess around with HER2 +. They have a lot of ways to help control Chemo side effects. You'll get a lot of support and information from the amazing group of women on this site!
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Thank you all again for posting and helping me. When you got your infusions, what was that process like? How long did it take? How do you feel afterwards? Like can you drive home or go back to work? Did you use Cold Caps?
Thanks, Annie
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My infusion days were long. I met with the MO or his nurse. Then went over to infusion. Since I did TCHP I had to get all 4 drugs separately , plus the pre-meds. So I was usually at the cancer center for 5-6 hours.
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The first day was the longest...I think I was there 8 hours! But I had blood work, saw the doctor, then got to the infusion room. Plus there is a little bit of a wait because they don't have your meds ordered until you get there. So the ACTUAL time getting infused (is that the word? LOL) was much less. After the first time, took about 5 hours.
The process itself...eh...nothing to it. Just bring stuff to keep yourself occupied. Laptop, phone, magazines...they will probably have TV's to watch. Bring snacks too. I usually felt fine after my appointments. Would always stop at Target on my way home since it was right by my center.
My husband dropped me off for my first appointment since I didn't know what to expect. But after that I always drove myself.
And no cold caps for me...it was all I could do to hold on to the frozen pea bags during Taxotere! (To possibly prevent neuropathy and damage to your nails) I hate the cold and that would have been unbearable for me! Plus my hair wasn't "all that"-- ha!
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My first day was the longest as well, and subsequent infusion days were still in the 5 hour range, since they were giving all four meds plus some Benadryl, Aloxi and steroid first. I felt fine the whole day and was mainly just tired from being there all day. The next day was usually OK too, thanks to the steroids and the aloxi (anti-nausea), and I'd go back for the Neulasta shot that day. Chemo was on Thursdays, and usually Saturday evening and Sunday were the worse. For me, chemo seemed to trigger my migraines (which I get often anyway), so I'd be dealing with those as well, but that's pretty unusual for people.
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The infusion process was easy. I was able to be on conference calls and no one had any idea where I was! Take books, laptop, movies, etc. It does get boring. The total time with doctors and infusion treatment was 4-5 hours. I felt fine afterward and always drove myself. I scheduled my appointments for the afternoons so I could go home vs. going back to work. I usually couldn't get to sleep until ~ 2 am because of the steroids. I didn't use cold caps. I learned a lot about myself, my teenage boys, my co-workers, and strangers when I was bald and wore scarves. In general, everyone was amazing. Some people stared, but it taught me what disabled people go through every day. Your attitude makes a huge difference!
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<Thanks again, I'm so glad that I knew what to expect. I was able to handle myself and didn't yell or cry. I did take a lorazapam because I started loosing it over a miscommunication around the time of the appointment.>
First appointment with my MO today. Dr. Ruben, I liked him a lot. So I am in for 6 rounds of TCH. Every three weeks. Starting mid-April. I have a re-excision and port placement procedure on Wednesday. He said I can't delay that long either but was encouraging that he'll change things if I go south and can't work. But from all of your stories, I think I can do this now. I don't want to but it'll buy a 20 - 30% lower recurrence rate over 10 years so I'm taking the deal. Wish it was a 90% drop in recurrence rate but its not. This is a bad pathology. He recommends having the infusion Thursday afternoons and taking Friday off. I guess I still don't understand the cycle.
Is it>>>Chemo day, next day you feel good, then 2 bad days, then you feel better for the next couple of weeks and then you start again? Do you have bad days during those two weeks?
And anti-nausea shots, weekly blood work, and I think he said shots of white blood cells 3 times a week? What is that? Sounds like something out of a vampire movie.
I think I'll do the Penguin Cold Caps - I think my clients would have a hard time with me having lost my hair and I am wanting to go through this without anyone at work knowing. I hope I can anyways. Personally, I don't think I'd have that hard of a time with my hair lost for awhile and growing it back to mark the time since treatment ended.
Anyone else do cold treatment to prevent the neuropathy in hands and feet?
I'm a bit blank in my mind. Thank you all for answering my questions. It means the world.
Annie
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Sounds like you are on your way to the start of treatment. The injection is most likely the white cell booster Neulasta which is done 24 hours after chemo every three weeks. I received anti nausea meds intravenously just prior to infusion, but the anti-nausea meds post infusion were oral meds. There are a numbe of people who do cold caps - just type cold caps into the search box and you will get some threads. People who post there can fill you in on the details. There is less consensus regarding whether cold on your hands and feet has any effect on neuropathy - most of us have done it to preserve nails - Taxotere can cause nail loss. I took B6 and L-Glutamine to prevent neuropathy, with my oncologist's blessing. I did experience some tingling/numbness that resolved between infusions until the last couple, and then the numbness lasted until about 3-4 months post chemo, and it did go away.
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I had infusions on Wednesdays, every 3 weeks. Thursday and Friday were okay. Not wonderful, but fine. The anti-nausea IV meds last 3 days, so that helps make those days bearable. Saturday and Sunday I would lie in bed most of the day and rest as much as possible. Monday I would start feeling a bit better. And each day after that feel a little bit more better.
Round 3 things did not get better on Monday. Tuesday I ended up in the ER to get fluids and ended up having a C. diff infection.
Rounds 5 and 6, I ended up tired/not feeling great on Thursday and Friday following infusion. I suspect it was just the cumulative effects of chemo.
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I'm glad you're getting a plan in place. For me, chemo day and the day after were fine, really. The next 2-3 days weren't great. Rounds 3 - 5 were probably the hardest, but for some reason round 6 seemed easier. I had a lot of anxiety with the first round, not knowing what to expect, and I'm sure that helped trigger my migraine that time around. I didn't ice my nails, and while I didn't lose any or have any neuropathy, I did have some issues with some of my nails lifting toward the end, which hurt. You might want to talk to your MO/nursing staff about icing. I didn't cold cap either, but in hindsight I wish I would have learned more about it. It all happened very fast, and no one at my cancer center counseled me about ways to save my hair.
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I kept my hands in crushed ice for carboplatin and docetaxol (art teacher and I was terrified of hand neuropathy) - no neuropathy in hands at all. I did not ice toes or feet....then terrible foot neuropathy issues and I iced feet my last chemo 6 (waited too late). Finished the chemo first week in November and still dealing with foot issues, but SLOWLY improving. I was so worried about hands I neglected my feet and wish I had been more on top of it. Just my experience...still on Herceptin through July 2016.
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Chemo day (Wednesday), I felt good. I felt OK on Thursday and Friday. By Friday night, I would be feeling kind of shaky. I'd take it easy during Saturday and Sunday, and began feeling better on Monday. But everyone is different! I think I felt OK for a few days because of the steroids. (By the way, the steroids do keep you up, so you may want to think about sleep medication for just those two days. I took Ativan, but others do just fine on Melatonin or Benadryl.) I never iced anything, and I did get mild neuropathy in my fingertips. But, it went away after I stopped chemo.
I didn't cold-cap, but I was doing AC, not TCH. Cold-capping seems to work better for TCH than for AC. I did get a wig which looked better than my real hair. Many of my acquaintances just assumed that I'd gotten my hair colored (it was slightly darker than my real hair), and they were very complimentary. I told my boss and my colleagues about my cancer; I didn't care what they all thought. I'm a college professor, and I taught my two classes, as planned. But, I stepped down from some committees until I finished active treatment.
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