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Herceptin Side Effects?

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24

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  • ingerp
    ingerp Member Posts: 1,514
    edited July 2018
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    Thanks for that, jo6359. I’ve been getting my infusions at 9:40 AM and am trying to schedule rads late mornings/lunchtime—is there any reason not to do them in that order? (Yes I know I’m probably overthinking this!)

  • jo6359
    jo6359 Member Posts: 2,009
    edited July 2018
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    My RO gave me a choice before or after infusions.

  • ingerp
    ingerp Member Posts: 1,514
    edited July 2018
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    Roger that. I'll talk it through with her. (We don't even meet until August 9th--I am so looking forward to getting to the next stage of tx!!)

  • jo6359
    jo6359 Member Posts: 2,009
    edited July 2018
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    Been there. I was very glad when radiation started early . August 9th will be here before you know it.

  • Positiveinohio
    Positiveinohio Member Posts: 22
    edited July 2018
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    All went well today and I feel pretty good. My rads started at 9:15 and ended at 9:50. This first appointment was a little longer as it was my first one. They took some xrays and I have 3 new dot tattoos. I have 6 dot tattoos altogether. The first three were given to me when I was initially mapped a couple of weeks ago. The treatment actually only took 5 minutes and was painless. I then had my Herceptin Drip beginning at 10 am. However, this was delayed for some blood work due to the swelling in my feet. Blood results were normal so I am having a MUGA scan on Wednesday just to make sure there as not been any change in my heart function. The Nurse practitioner thinks the swelling is being caused from the steroids still left in my system. I did soak my feet in an Epson Salt bath the last couple of days and it has reduced the pain and swelling. I did get my Herceptin drip eventually and feel fine this evening. I am not having any pain or redness from the radiation yet. I will keep you updated.

  • Beatmon
    Beatmon Member Posts: 617
    edited July 2018
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    Positiveinohio: do you have quarterly MUGA scans? That’s what I have and the recommendation from Genentech. Just wondering because I’ve seen others that do not have them routinely.

    Maybe you need a little diuretic to help move that fluid out

  • ingerp
    ingerp Member Posts: 1,514
    edited July 2018
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    Oh yeah the blood work! So if there are no problems (like the swelling), that’s not a regular part of the H only like it was pre-chemo, right? I’ve read here no pre-meds but am I right in assuming they don’t check your blood every time either?

  • carmstr835
    carmstr835 Member Posts: 147
    edited July 2018
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    I had herceptin during my radiation treatments, but they stopped the Perjeta during the 7 weeks of radiation (30 fractions). I did not have any issues except recently I have been developing worsening neuropathy in my right hand only, only my right side was radiated, so I am inclined to believe perhaps it is more due to radiation than the herceptin or perjeta. My herceptin and Perjeta wa completed in May of this year and the neuropathy continues to worsen.

  • jo6359
    jo6359 Member Posts: 2,009
    edited July 2018
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    Ingerp- I have blood work completed prior to herceptin and perjeta infusions. My oncologist won't order the infusions until he reviews my blood work. This is the protocol at the cancer center. I'm sure protocols can differ depending on which Center provide your treatment.

  • ingerp
    ingerp Member Posts: 1,514
    edited July 2018
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    Ah--thanks, jo. For some reason I thought they didn't need to run the bloodwork but I haven't asked anyone yet. I know it's a 60-minute appt, so plenty of time to check the blood and do a 30-minute infusion. Oh well. . . (And actually I've been having fun every Wednesday when my lab work gets released from the previous Friday seeing how I'm doing over time.)

  • jo6359
    jo6359 Member Posts: 2,009
    edited July 2018
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    I've been too busy lately to review my lab results. I too enjoyed comparing the results from one lab test to the next. The Simple Pleasures in life.

  • ingerp
    ingerp Member Posts: 1,514
    edited July 2018
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    Smile

  • Sidalee
    Sidalee Member Posts: 113
    edited July 2018
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    Ingerp~I'm scheduled for bloodwork and a visit with the MO/NP before every HP infusion also. Like you, I enjoy reviewing my bloodwork on the portal and comparing to previous draws, I am easily entertained

    Winking

  • hapa
    hapa Member Posts: 613
    edited July 2018
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    Ingerp - My NP told me I'd be getting bloodwork before the first four HP infusions, but less often after that. I can't remember how often though. And of course I too love looking at my labs. I'm just waiting for the red cell count and hemoglobin to start trending back up. Amazingly my liver enzymes went back to normal before the end of chemo.

  • ingerp
    ingerp Member Posts: 1,514
    edited July 2018
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    Thanks Sidalee and hapa. I'll see my MO every other H only, and me too--show me some numbers and I break into a smile. ;-)

  • astyanax66
    astyanax66 Member Posts: 223
    edited July 2018
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    Sorry, I've been out of the loop with the start of school.

    I did got to Herceptin-alone round 2 in the afternoon yesterday. I will say that I had side effects, but since I expected and prepared for them this time, it was better than Herceptin-alone round 1. I got the headache, some bone aches, and a new one (nausea). So, next time, I know to take Zofran before infusion along with Tylenol. (I do this on my own since there are no pre-infusion meds). All have been manageable. They are still pushing it in 30 minutes, no budging on that. Liver function was much better, WBC are great, but there is still some anemia, though hemoglobin was normal for the first time in weeks. :)

    Hope everyone is doing well so far and not experiencing too many side effects!

    Dee

  • ingerp
    ingerp Member Posts: 1,514
    edited July 2018
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    Dee--I am so sorry but if it makes you feel any better, I will absolutely learn from your mistakes. I confirmed just this morning that I too will not be getting any premeds. So did you not get nausea with the T + H? I haven't had an issue with it, but I know we've talked about the big dose of H only potentially coming with some not fun, new SEs. Have you taken any OTC pain meds for the headache/bone aches? I tend to toss down some Advil before many medical appts (like my tooth cleaning yesterday). And I'm curious how long the aches/nausea last. Please check in and let us know over the next few days. Enjoy your weekend!

  • astyanax66
    astyanax66 Member Posts: 223
    edited July 2018
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    Nope, never had any nausea with Taxol + Herceptin, BUT I got Zofran, Pepcid, Decadron, and Benadryl as pre-meds (very effective), and I learned to take Aleve right away (and Claritin), which helped with bone pain. They were very proactive about preventing nausea.

    For just Herceptin, I now take (my own premeds!): Zofran, Tylenol, and Claritin. If bone pain is worse, I take Aleve when I get home. The doctor gave me many refills of Zofran, so I have plenty of it. Obviously, just bought everything else at grocery store. I never exceed the daily dose of anything, of course, and I used 4 mg of Zofran, which worked fine (the tablets I have are 8 mg). My bone pain lasts a couple of days, then fades away. I do not think everyone has bone pain, so maybe it won't bother you too much??

    Dee

  • ingerp
    ingerp Member Posts: 1,514
    edited July 2018
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    I'm so glad you warned me, Dee! I get the same pre-meds but haven't had to take any Zofran afterwards. I will definitely load up on that, some Claritin, and probably some Advil before I go in for my first H only just in case. I'm so glad I read these boards. Others have warned about the SEs of the increased dosage of H and it had never even occurred to me. First H only will be 8/10, and I will be ready!!

  • jo6359
    jo6359 Member Posts: 2,009
    edited July 2018
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    I've had two treatments of h&p only. Benadryl is offered with my h&p but I always refuse it. My Mo did tell me if I experience any nausea he will order a pre nausea medication. I have always taken Claritin 3 days prior to chemo and h&p only. Maybe that's the reason I haven't experienced any bone pain. Occasionally I will experience generalized muscle weakness and fatigue. Exercising daily throughout chemo, h&p only and radiation has helped me physically and emotionally.

  • astyanax66
    astyanax66 Member Posts: 223
    edited August 2018
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    Well, I’m still having Herceptin side effects. I’m more than a month past last Taxol (like 7 weeks), just doing Herceptin. As of today, eyelashes are all gone and eyebrows on their way out. I guess it could be a late onset effect of Taxol, but it seems very late. My EKG was fine, but I’m having edema and joint pain. Pretty much everyone’s attitude is, aren’t you thankful for Herceptin (yes, of course) and isn’t it worth these side effects for a year? Yes, I guess so. But it’s hard seeing people who finished chemo when I did able to start recovery, when I’ve got 6-7 more months of feeling rough.

    Anyone else in this situation?

    Dee

  • Debsmisto
    Debsmisto Member Posts: 106
    edited August 2018
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    I get bloodwork every other herceptin only infusion tho my MO wants to add perjeta so I'm not sure what that protocol will be

  • ingerp
    ingerp Member Posts: 1,514
    edited August 2018
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    Dee--I really think it's related to Taxol, even though you have been out of it so long. I've read many posts about women losing their lashes 2-3 weeks after finishing it. You might just be a bit of an outlier. FWIW, someone's MO told her lashes are "the last out but the first to grow back". I think you'll start to see re-growth in a few weeks but keep us posted. Has your MO mentioned the study that came out in June suggesting six months of Herceptin is as effective as 12? I started a thread on it. I meet with my MO this Friday (first Herceptin only) and she's just back from an ASCO conference where she was going to look at the data herself and decide how to proceed with her patients. I started a thread on this:

    https://community.breastcancer.org/forum/80/topics/866240?page=1#idx_3

  • astyanax66
    astyanax66 Member Posts: 223
    edited August 2018
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    I haven't seen an MO since June--mine left to work on her board certification. I'll see someone new in 2 weeks. I did ask about the Persephone study...I'll chime in on your new board. :)

    dee

  • Positiveinohio
    Positiveinohio Member Posts: 22
    edited August 2018
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    Hi Dee,

    I feel exactly the way you do and have considered stopping the Herceptin drip.

    I have had 2 of my Herceptin treatments and am scheduled for my 3rd next Tuesday. I am also experiencing SE which I also believe is from the Herceptin. However, my MO and the Chemo nurses all think I am crazy and say they are not aware of Herceptin only causing SEs. I am still having joint pain in my toes and fingers and also swelling of my feet. My Nurse Practitioner ordered a MUGA scan last week and my heart function is "perfect". Therefore she thinks the swelling is from the steroids still being in my system from the taxol. However, I am not convinced because I did not have this joint pain or swelling when I was on taxol +herceptin. I also get frustrated because when I try to exercise my feet just swell up. I have not seen the MO since chemo ended but I have an appointment with him next week. I also asked about extending the drip to 60 minutes but they said it would not make a difference. No one seems to think that these symptoms are from the Herceptin. I am really frustrated. I have been doing the Tylenol and alieve but will add the claritan. It cannot hurt. The problem is that the symptoms do not seem to suside in the three weeks between treatment. I am definitely going to ask my MO about 6 months instead of 12 and will keep you updated.

    Radiation is going fine and I have had 11 of 21 treatments. I have had no burning or redness but just a little fatigue.

    Take care everyone and I hope you have a good week!!!

    Kandy

  • astyanax66
    astyanax66 Member Posts: 223
    edited August 2018
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    Kandy, what a timely post....I’ve been in such pain today. Hands, knees, and ankles are all swollen and stiff. I walked just under a mile and it made the pain worse. My echo was fine, and I go for Herceptin only round 3 next Wednesday the 15th. I meet the new oncologist on the 13th. I’m considering seeking a second opinion from a different oncologist if this one makes light of the situation. It’s also time to have the aromatase inhibitor discussion, and I can’t imagine....I took Tylenol, Alene, and applieda couple of lidocaine patches externally. Hope you get some answers and relief soon.

    Dee

  • specialk
    specialk Member Posts: 9,227
    edited August 2018
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    astyanax - cycling of lashes and brows is very common after chemo, when the hairs that normally fall out infrequently, like lashes, all are lost at once it can take some time for the pattern to establish itself again. The result is sometimes a loss and regrowth pattern that lasts longer than it does for others. It will eventually settle down.

    For those who are receiving Herceptin in 30 minutes and are having pain - I have seen this too many times, and experienced it myself, to believe it makes no difference how quickly it is infused. I asked to slow the infusion from 30 to 90 minutes, which is what I had during chemo also, and it made all the difference. It is anecdotal evidence, but it is still legitimate. If you are having pain after infusion some of it may be latent bone pain from a taxane, but I would ask your oncologists what would it hurt to slow the Herceptin down and see if it makes a difference? If your center is not cooperative remind them who the customer is and also that dosing is authorized from 30-90 mins, it is not mandatory to shorten the infusion time. I found that going to my center later in the day when things were less busy made it easier to have a longer infusion time - they didn't need the seat to be available.

  • NotVeryBrave
    NotVeryBrave Member Posts: 169
    edited August 2018
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    Agreed. The infusion can be sped up to 30 minutes, but that is not mandatory.

    I had a weird reaction (strange feelings in my throat and heart fluttering with high blood pressure) after being pretty stable on Herceptin alone. This happened on two occasions and the chemo nurses advised slowing it down to 60 minutes. I did better with the remaining ones.


  • Positiveinohio
    Positiveinohio Member Posts: 22
    edited August 2018
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    Thanks everyone for the great advice. I am going to stop in to the Chemo room tomorrow after radiation and talk to the nurses to see if they are willing to slow the drip down. They said no when I asked but it never hurts to ask again. I am sorry Dee that you are in the same boat as me but glad I am not alone. I am also glad to know that others have experienced the same symptoms. Stay strong everyone!!!

  • jo6359
    jo6359 Member Posts: 2,009
    edited August 2018
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    dee and deb- I receive herceptin and perjetta only now. I am 9 weeks post chemo. My hair has started growing back approximately 4 weeks post chemo. My eyelashes and eyebrows are slowly coming back. No hair on my arms or legs or my privates. Today I finish radiation. Radiation went smoothly. Another Milestone finished. My biggest concern are long-term effects from chemo and the other treatments. I am concerned with long-term effects of possible neuropathy and lymphedema. I am grateful for the treatments but we are entitled to feel frustrated and even anxious about the side effects from the treatments.