Chemo or no chemo for stage 3 her2+ bc

Nisha517

hello all,

I was diagnosed in July with stage 3 her2+ bc and it spread to the lymph nodes. I was told I would need 6 rounds of chemo prior to surgery. I competed 2 rounds but now am debating if I should continue. The side effects were BRUTAL. I feel like my life has been stolen from me. I met with the doctors a couple days ago and told them that I want to stop chemo and they were not happy. They said the decision is ultimately mine, but it would be the wrong decision if I stop. My main concern is that this is poison I am putting in my body. And that the number of recurrences even after you do chemo Are way too high for me. WHy should I continue if there isno guarantee that a recurrence won’t happen. And I’m reading that chemo causes cancer?!?! I am very confused and need advice!

WC3

Nisha517:

Your breast cancer is of a type that chemo is still standard for, particularly with it being in the lymph nodes. But you ultimately have say in what you choose to do.

If you share what chemo and other meds you are on and what side effects you are having, we might be able to give you tips to better manage them. Also, if that fails, they can always reduce your dose or, in some instances, change your chemo to something you might tolerate better.

Nisha517

hi wc3,

Thank you for your response. I see that you received the same chemo and targeted treatments as me- taxotere, carboplatin, hercaptin and parjeta. My side effects include but not limited to, major body pain all over, lots of vomiting (and dry heaving) and diarrhea, mouth issues (sores, gum issues, taste issues, dry mouth), nose bleeds, extreme fatigue, can’t talk, can’t eat (throw up after just one bite), extreme weakness, etc. the side effects last about 2 weeks. For 2 weeks I am bed ridden. I can’t go outside, I can’t even shower because I am too weak to stand. This all just doesn’t seem worth it if there’s no guarantee of a recurrence and if chemo causes more cancer

Nisha517

Thank you for your response. I see that you received the same chemo and targeted treatments as me- taxotere, carboplatin, hercaptin and parjeta. My side effects include but not limited to, major body pain all over, lots of vomiting (and dry heaving) and diarrhea, mouth issues (sores, gum issues, taste issues, dry mouth), nose bleeds, extreme fatigue, can't talk, can't eat (throw up after just one bite), extreme weakness, etc. the side effects last about 2 weeks. For 2 weeks I am bed ridden. I can't go outside, I can't even shower because I am too weak to stand. This all just doesn't seem worth it if there's no guarantee of a recurrence and if chemo causes more cancer

WC3

As for chemo causing cancer. The risk is about 0.5% of developing some form of leukemia.

I don't know all of your tumor specifics and age but my odds of survival if I take my tumor stats and add 3 positive nodes is about 70%. If I forgo chemo that drops me to about 60%.

In the chance I got leukemia from chemo, given my breast cancer was succesfully treated, at the current point in time, my odds of surviving would be roughly the same as my odds of surviving breast cancer...maybe higher because I know I have a lot of bone marrow donor matches. But if I get leukemia it would likely be years down the line and new therapies such as CAR-T will be more widely available. So my odds of survival would be higher.

ElaineTherese

Nisha,

Have you talked to your doctors about your side effects? Have they prescribed you anti-nausea meds? What about meds and ideas for resolving your diarrhea and mouth sores? Also, if you are experiencing lots of vomiting, you may benefit from intravenous fluids. Some of your weakness may be due to dehydration.

If your doctors want you to complete your regimen, they should help you address your side effects. Another option is to switch to an easier regimen -- to replace the Taxotere + Carboplatin with Taxol. Ask them about that.

I was also diagnosed as Stage III, HER2+, but I did a different regimen. It wasn't fun, but I would do it again in a heartbeat. HER2+ cancer is aggressive.

((Hugs))

Nisha517

thank you. And how did you manage your side effects? Are you currently undergoing chemo treatments

Nisha517

yes, they have prescribed anti nausea medications and something for the mouth. For diarrhea, I take Imodium. For body aches, they said clairitin. So I do take these, however, it gets hard to many times because I start gagging since I am nauseous. On the second round, I did go in to the hospital on the 11th day to have fluids and that did help. I was trying to go in way before the 11th day but with all the side effects and being unable to get out of bed, it’s hard. And yes you’re right, a lot of my weakness and side effects are due to not being able to eat and drink. The sores and mouth issues don’t help. I am supposed to have my third infusion on Monday. As of now I haven’t cancelled it but I’ll go and meet with the doctor and tell him everything and see what he says about dosage.

ElaineTherese

Nisha,

I finished chemo in December 2014, but didn't finish Herceptin until December 2015. I was also an Imodium user, and had prescription anti-nausea drugs at home, used when necessary. I also used an over-the-counter med to combat heartburn. Yes, talk to your doctors about dosage reduction or maybe a change from Taxotere + Carboplatin to Taxol.

Nisha517

Elaine-

How long did your side effects last?

ElaineTherese

The weird taste thing went away after a month post-final chemo. By January 2015, I was OK and did my surgery. Then, I did radiation, starting in March. That turned my chest pink, but by May, the skin on my chest was back to normal.

The only thing that has been permanent has been my skimpy eyelashes and lack of leg hair. It means that I no longer bother to do mascara and I no longer have to shave my legs. Otherwise, I feel good.

Nisha517

Elaine-

Thank you. This all is very helpful. I am really trying to be brave and not be scared. As far as side effects go, did all of your infusions seem the same, or was one worse than the other(s)

WC3

Nisha517:

What do they give you for nausea during infusions? Do you take dexamethasone/decadron?

My original anti nausea meds were as follows:

Day before infusion: 8mg of dexamethasone, morning and evening.

Day of infusion: IV dexamethasone. IV Aloxi. IV Zofran?

Day after infusion: 8mg if dexamethasine, morning and evening, plus zofran tablets as needed...typically one in the morning at the slightest sensation of nausea and maybe also the next day.

This worked very well for my nausea but Aloxi gave me a bad taste that lasted almost the entire cycle so I am now guven IV Zofran and IV Emend instead. I get a little more nausea with this but nothing the Zofran tablets don't take care of.

I use biotene toothpaste to help prevent mouth sores. I still get swollen taste buds but popsicles help.

I also start using prilosec to prevent acid reflux 5 days before I take the dexamethasone and a few days after and switch to Zantac for a day or two before going off both.

ElaineTherese

My Adriamycin + Cytoxin infusions (every two weeks) produced harsher side effects than my weekly Taxol infusions. That was not surprising because AC is a harsher chemo regimen. I was happy to switch to Taxol + Herceptin + Perjeta (every three weeks). I had less chemo brain and felt steadier on my feet.

WC3

I have been able to control the reflux now that I am religious about starting the prilosec 5 days before the dexamethasone.

Basically here is generally how my infusions go. There has been some variation though and these are not all of my side effects. My first two infusions had the worst first week side effects. These below are more similar to infusions 3+. My dose was reduced for my 4th and 5th infusion because my original dose became too high due to weight loss and my platlets dropped too low but I think the first two infusions had rough first weeks because of the shock to my body and the fact I didn't know what to expect or how to manage it.

Day 1: Infusion. Sleep after.

Day 2: I might still feel ok or my muscles might burn a little. Neulasta injection. Taste is off from Zofran and dexamethasone.

Day 3: Red face and tender throat/esophagus from dexamethasone withdrawal. Muscles burn easily. Taste still off from Zofran and dexamethasone.

Day 4: Worsening of day 3 symptoms. Weak. Mild/moderate nausea but can take Zofran for it want to...rather not due to bad taste it causes me. Aches from Neulasta start. Take Claritin, stay in bed.

Day 5: Much the same as day 4. No longer red.

Day 6: Still very weak. Throat/esophagus not as sore. Able to eat better. Tip of tongue getting sore. Chemo starts to affect taste.

Day 7: Feel a little better. Stomach cramping starts and will gradually taper off towards end of cycle. No more Neulasta aches. Things losing taste/starting to taste bad due to chemo. Swollen taste buds.

Day 8: Not as weak. Things lack taste or taste bad due to chemo.

Day 9: Feeling a little better. Things have taste again.

From here on out I am generally in recovery as far as listed side effects go but get stomach cramping easily, sometimes literally after I swallow something and sometimes 30 minutes or over an hour later. Basically every time my bowels move my stomach cramps. I'm also anemic/thrombocytopenic.

Nisha517

hi Elaine and wc3-

Thank you so much for all the advice. I appreciate it so much. i definitely going to talk to the doctor about taxol instead of taxotere. Did you also do carboplatin with the taxol? Also, I’ve read somewhere that having the infusions for 3 hours is better for side effects than having it done quickly in 1 hour. Is there any truth to this

WC3

Nisha517:

I am on taxotere, carboplatin, and then the target therapies, herceptin and perjeta. If I recall, for me they do a 1 hour drip on the taxotere followed by a 30 minute drip with the carboplatin and then I think the Herceptin and Perjeta are also 30 minutes each. I am there for about 5 hours total with the time it takes to do all of the pre meds (Saline, Benadryl, Tylenol, Dexamethasone, Emend, Zofran).

ElaineTherese

Nisha,

If you switch to Taxol, you will not receive Carboplatin with it. But, you can still get your Herceptin and Perjeta.

Nisha517

hi ladies,

Thank you for all the insight! Before joining this group, I thought I could handle all this by myself. However, as time went on, I began to feel alone and very depressed. Yes, I have my wonderful husband and family, but they can’t poasibly know what I go through physically and emotionally with this disease. And I have been contemplating quitting chemo for the past two weeks. However, seeing so many brave women on here and getting their advice, I’m starting to feel a renewed sense of empowerment. So thank you guys so much! Unfortunately, I also learned more on here about managing side effects than from my oncology team which I’m very angry at them for.

I also recently heard that taxotere can cause permanent hair damage. Any truth to this

NotVeryBrave

I'm so sorry that you're having so many problems with the chemo regimen. I would encourage you to complete it if possible. My cancer was eradicated with the same protocol. That said - you need to have a life during this time by having your SE's managed better.

I recommend keeping a daily journal of what you're experiencing. That helps when you see your MO and also helps you to prepare for the next round. Here's a few of my tips:

I sucked on ice during the chemo drugs to reduce mouth sores. I took Claritin every day through the whole six rounds to help with bone pain. I started taking Compazine twice a day as soon as I finished the steroids to prevent nausea and continued that for a few days. Once I knew when to expect the diarrhea, I started taking Imodium on a schedule for a few days to prevent it. Early on I ended up with severe gastritis and that was fixed with Prilosec and Carafate.

My doses were all reduced by 25% after the first round as well because it put me in the hospital with Febrile Neutropenia. You might request a review of dosage. Having a standing order for IV fluids a couple of days after the infusion would help as well.

I usually felt okay but tired for the first two days then very achy and kind of sick for the next few days and then gradually felt better. I was pretty normal the week before the next round. The taste issues only started to improve right before I got zapped again.

I hope this helps. I know it seems like a really long road when you don't feel well at all.

Nisha517

notverybrave-

Thank you for your response. Yes, I believe first and foremost I need to have a conversation with my MO about the side effects and how he can help me better manage them. The second round I made it to the hospital on the 11th day after infusion to get fluids and it made a world of difference. I wish I could have made it before, however, I just couldn’t get out of bed. But I am willing to try the 3rd infuwith better side effects management and see if that’ll make a difference before I throw in the towel. I have a question for you- did your hair grow back after Taxotere ??

rainnyc

Nisha, like you I was stage III Her2+ and did chemo before surgery, continuing herceptin/perjeta after surgery. I'm so sorry you're having such a difficult time, but I agree with others that your medical team should be MUCH more aggressive in managing your side effects. For what it's worth, I did taxol rather than taxotere/carbo, and I'd definitely ask if this is an option. But if it isn't and they want you to stick with taxotere, I think you need a much improved regimen for handling the gastrointestinal side effects.

I also agree that you should continue with chemo, but it's pretty clear that your medical team should be doing more to help you, including reviewing whether taxol might be a better choice for you.

For what it's worth, this month is my three year anniversary of stopping chemo. Like others, taste issues went away within a month after stopping chemo, and gastro side-effects (I had diarrhea, no nausea on chemo) stopped pretty much immediately. More importantly, the path report on my surgery revealed no evidence of active cancer.

Good luck!

NotVeryBrave

Yep! In fact - it started to grow back before the chemo rounds were completed!

Nisha517

not very brave-

That’s very encouraging! I keep seeing everywhere that there’s a possibility of permanent hair loss with Taxotere so that is freaking me out. But it’s good to know that may not be true for everyone! Did your hair grow back the same way it was bwfore

Nisha517

rainnyc-

Yes, I agree, I need better side effects management. I am meeting with my MO on Monday and going to list off every single side effect and when they occur so we can come up with a plan. I believe a lot of my nausea comes from me not being able to eat or drink so we need to figure something out. But congratulations on your 3 year anniversary!!! That is a huge milestone!

rainnyc

Nisha, one other thought: you are right to make your doctors focus on your symptoms and getting you some help! For what it's worth, I found the chemo nurses (not the office nurses, but the ones who actually administer the drugs) had the best suggestions about side effects. The docs care a great deal, and they do know a lot, but it was the chemo nurses who had more on-the-ground experience with a range of drugs, and they were really helpful.

Example 1: I had IV benadryl as part of my regimen, and it made me sleepy and high, which was a terrible combination. A nurse suggested hydroxyzine, which was much easier on me.

Example 2: I had terrible diarrhea, and the doctor's office nurse was really pushing the BRAT diet around the clock (for what it's worth, I dislike bananas and apple juice.). Chemo nurse: "oh for g-d's sake, just take imodium!" I would never have considered that option, and the MO apparently wouldn't have either!

hapa

Nisha - I was worried I'd be one of those women whose hair didn't grow back after Taxotere. Mine took longer than usual but I finally have a layer of soft fuzz on top. Good luck with the chemo. Physically, the first and second infusions were the worst. After that I learned how to manage side effects and it got easier. I also had the Emotionally, I think the fourth infusion was the worst, the last two were easier because I felt like I was on the home stretch. I also had the nose bleeds for the first couple rounds, they peaked at the second round and I stopped having them by the fourth round. Even the extreme fatigue got better for me, which I wasn't expecting but I think once I was on top of the nausea, I was able to optimize my nutrition, drink lots of water, and get some exercise which helped with everything else. Ask for stronger nausea meds if you need them, I think staying on top of that is key. Are you taking steriods (dexamethasone)? I hated them but they are probably why I had as little nausea as I had.

NotVeryBrave

My hair came back with more curl. It was always wavy - like the amount of curl that just makes it misbehave - but what came back was very curly. That may have had something to do with it obviously being short so no weight to pull the curl out! These days it's more manageable on top with the ends still pretty curly. I haven't had it cut in almost a year because the last time (when I just wanted it evened out) it looked like an old lady hairstyle!

BTW - I almost quit chemo after the third round. I thought I'd be more positive with being halfway done but just felt "done" with all of it. Talking it out with my MO and making some changes kept me going. That and knowing that I always could quit. But I knew I'd kick myself if it came back and I didn't do what was recommended.

I know it's a crapshoot. We all know people who did everything and still it returned. And there are those who do very little and survive. You have to do what makes you feel the best.

Nisha517

Rainnyc-

I feel like the infusion nurses are ok where I am. I need to be more adamant about them helping my side effects. Sometimes I felt like I would be bothering them so I didn’t speak up and just suffered. But, yes it is their job to make this as easy and comfortable as possible. Maybe we will get to sit down with our nurse on Monday, as well. I was supposed to have my 3rd infusion this Monday, however, with all the back and forth I was having about whether or not to continue with chemo, we tentatively moved it to next Friday to see what the doctor will say on Monday. What was the hydrocordizine for? And what is the BRAT diet? I do get very bad diarrhea and take Imodium, but that doesn’t seem to help.

Hapa-

Yes, I feel if I can combat the nausea, it can make a whole lot of difference. I can’t be active because I feel like one wrong move, and I’ll be puking. So I stay very still in bed. But it’s the mouth issues that also cause a lot of the nausea. I can’t eat or drink due to them which in turn causes nausea. But I’ll be discussing all this on Monday with the doctor and nurses. I do take that steroid before, during and after. I’m going to ask for different, stronger anti nausea meds. Also, I’m so glad your hair is growing back! I’m terrified whether or not Minewill grow back.

NotVeryBrave

Pretty much since my diagnosis I've wondered if I'm complaining too much or not enough! Too much and I feel like they don't listen anymore. Not enough and they don't take me seriously. It's hard to find the balance at times. But if you don't speak up - they may never realize how bad off you are.

Nisha517

not very brave-

Thank you for sharing that you also wanted to quit. I’m sure there are many people out there who are in the same boat. I am also beginning to think now “ok I’ll do 4 totaland then stop. That should be good enough.” So I’m proud of myself that I at least went from completely quitting after 2 to saying ok I’ll do 2 more. And who knows, maybe after the next 2, I’ll convince myself to do the final 2. But that’s later down the road. Right now I am focusing on the here and now. And you’re right, unfortunately it is all a crapshoot. If a recurrence will happen- it’s really not up to us. We can do everything right, but our bodies have a mind of their own.

As far as hair goes, I’ve always wanted curly hair, so I’m guessing if it does come back curly, I may not mind!