Herceptin - Quick Side Effects Poll
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BJI: the Edema (as far as I know) is only in my lower calves to feet. No where near cankle range, but usually my right is noticeably swelling more. Also, when it first happened, I ended up with an inflamed area exactly where my dog scratched me, which puzzled the after hours care doc. There are some light purple? spots on each side of my right ankle, just above the ankle bones.No spots in front or behind, odd. I got an antibiotic for the scratch: did noting for it but did clear my chemo acne up toot sweet!
I notice swelling if I've worked a long shift the day before. So, I try to cool it a bit on the salty items, eat bananas, drink more water, etc. Luckily today, when the nurse called to try to get me in, the swelling had gone down. She wanted me to come in anyway, but I refused; said I'd be in on Thursday. (The bloodwork will tell the tale and I plan on getting that RX one way or another, for Edema). My bosses are really nice and say that I can sit down when we're not crazy busy. Problem is, that doesn't help that much. I need to keep my feet above my heart. Can you picture me typing on a computer that way? LOL.
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Dear sisters, thank you for your compassionate, truth-seeking, truth-telling, courageous, intelligent, loving posts. I have been reading on this site for close to a year now but have not yet posted as I have been too tired until now. Your posts have helped me beyond measure in not feeling like I am paddling my boat through life alone. I am beyond grateful.
I have tremendous support out in the world, but none from anyone with breast cancer save a dear friend with stage IV, and she does not use Herceptin. Herceptin has been quite a trial for me and I have read and re-read these posts numerous times in order to stay sane and remember that so many side effects are possible and not uncommon. I have been on Herceptin every three weeks since August of 2016 and fingers crossed will finish October 2nd of this year. It took over 12 of my 18 scheduled cycles before my MO suggested (and agreed that I could) they be infused over 60 or 90 minutes. After changing the infusion rate the first time to 60 minutes I had tremendous relief from strong side effects. I was so impressed and grateful I had them switch it up to 90 minutes. I have been doing 90 minutes for the last 3 infusions and now only have 2 left. I can see the light!
I have found that my side effects from Herceptin feel cumulative as they did with chemo. I took 3 breaks from Herceptin due to timing of travel and surgeries. Those breaks gave me a huge lift from side effects and kept me going. The breaks were first one week, then three weeks, then two weeks. My MO did not like it at all and strongly argued with me, but I know my body and did it anyway. I wish that I had taken a longer break after my reconstruction, but my MO had a PA from the office call daily to tell me to come in so I relented. I am sure she thought I would quit early, although it has never been my intention. I have had many illness's in my life and I have had to learn to pace myself. The strongest side effect I have from Herceptin is strong pain wherever there is any injury or previous injury on my body. After my reconstruction in June I developed severe shoulder pain- first rotator cuff tendonitis, and now frozen shoulder. Those are currently the most severe pains, but I also have pain from a knee injury from my 20's (I will be 55 this month), pain in areas where I experience neuropathy (hand and feet), areas where I have had shingles (7 times in various locations, including my ear (which is called Ramsey Hunt) and now a tumor or growth has developed in that ear... soon to be diagnosed), pelvis (where I have scar tissues from several surgeries), tendonitis in both elbows, and general muscle pains. I also have significant nerve pain from the surgeries and am scared I may have PMPS so I will be seeing a pain management doc in a few weeks. I am at risk for lymphodema in both arms due to having bilateral breast cancer/lymph node removal so that takes away the option of injections into the specific painful places under my arms.
I also have fatigue, occasional nausea, and a mild facial breakout with each infusion. My side effects would come on with regular timing until I switched to 60 and 90 minutes and now they are all over the board. They are not as severe as when I did 30 minutes, but they last the entire 3 weeks. I prefer this milder experience and my mood doesn't take such a hit. I used to find that I would end up in tears the weekend that the side effects were at their peak. I will still experience sadness and grief but it is not as acute. I used to have swelling in my ankles that was painful but that has gone away with the longer infusions. The constant dripping nose also went away with the longer infusions.
I tend to have severe reactions to medications and it has been difficult to get my oncology team to believe this. I think they finally understand and they are extremely cautious and much more considerate now. I couldn't do the typical chemo regimen due to very severe neuropathy and so they switched me to Gemzar for the last 4 rounds. I had been struck by lightning in my early 20's and my nervous system obviously took a big hit. Almost all doctors who I see who don't know me will say "all bets are off" on what arises in my body due to the strike, but oddly the oncologists discounted it off the bat (I saw 4 before I chose my current doc). We are currently exploring what I might take as hormone therapy as they now believe that the AI's will be too rough with my hx of tendonitis. I have told them that I will wait until I am finished with Herceptin to start any hormone therapy. They would like me to have started about 4 months ago, but I am holding steady with my decisions. I feel like I need to tatoo QOL on my forehead.
I manage my side effects with a strong daily meditation practice (indeed it is now my DH and my business... meditation, self-regulation, biofeedback therapy). I began using meditation to help with my many difficult illness' about 10 years ago. We became very serious on our search for alternative ways to manage pain and sold our previous business (medical research and communications) and trained under the Dalai Lama's translator in many techniques that have changed my life. When I was diagnosed with BC my DH said "this is what we have been training for." I'll say! I also use occasional opiates for pain on very severe days, and I use medical marijuana with great success (but it does interfere with my ability to focus with meditation so I try to do it only at bedtime). Otherwise I am on no pharmaceuticals except the Herceptin. I wish I could, but the side effects from most drugs are too severe. I use Saffron for mood/depressive symptoms, and Tumeric (BCM-95) for inflammation. They work very well. I only discovered Saffron last year through research my DH did (he was a brain researcher) and am amazed it seems to be working.
Thanks so much for listening and being out there on the earth. I think of you all with great care and love, and hope for the very best for us all.
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couragement - welcome. You have certainly been through the ringer. Two more infusions to go....woo hoo!!!
Glad you were able to add your experience with extending the infusion time to 60 or even 90 minutes. I know it's hard to get some docs to listen, but it makes such a difference.0 -
HapB and MinusTwo! Thanks so much for your kind responses. MinusTwo, I am holding you in my heart with all that your city is going through and I hope you are doing as well as can be. HapB, the tumeric I use is called Curcumin BCM-95 and is sold by Progressive Labs. I saw a wonderful integrative doc that my husband used to work with at a big center and he suggested this. He says that the amount one needs for any beneficial effects is hard to get in a natural state. He thinks this one has the bioavailability that is needed. I believe it! It took a few months for me to make any connection to feeling better, but now I swear by it. The caps have 800 mgs in them and I take two a day. I also use curry and tumeric quite liberally in my food. My understanding from other integrative folks is that in order to get the benefits it needs to be combined with pepper (black) to make it bioavailable in its natural state. I am a big pepper user too!
Bareclaws, if you are out there I saw your post on your port issues. I too get an angry red spread around my port after every infusion. The very first time it was used it went up my neck and had big streaks in the redness (way beyond the tape as well). They sent me to the ER and the ER doc was not worried. It was itchy then, but now it is just a smaller red area with three very distinct red streaks that are about an inch long right above it. They tend to diminish over time. Fortunately, I don't have terrible itchiness, but I can only imagine the itchiness would drive you nuts. Does something like Benadryl help?
HapB, I so hear you on the AI decision making. I will probably post in an AI forum soon, as I am looking for anyone who is not stage IV that is using only Faslodex as their hormone therapy option. This is what my MO is considering for me since the 3 AI's are pretty much contraindicated with my issues and we are fairly certain I won't tolerate them. I will be seeing my favorite second opinion MO (researcher) at a big university hospital at the end of the month to get his opinion as well. I will let you know what I learn.
I hope you all have a good holiday weekend!
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Hello all! I hope that your SE have reduced.
My Herceptin update. My infusion nurse remembered that I had them do it for 1 hour last time, so I asked them to try 45 minutes this time and I'd let them know if anything happens. They upped my Carboplatin from 30 minutes to one hour and doubled the dose since my kidneys are doing pretty well these days despite the occasional bouts of Big D (10 and 15 trips on different days).
Hugs to all
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Ack! I just had a feeling of (wave) nausea after coughing today. A little background. I think beginning on Friday night, a day after my last chemo infusions, my sinuses have been going crazy; post-nasal drip, lots of mucus (sorry), hacking, dry nasal passages, etc. Then today, I hacked fairly deeply and my salivary glands went into overdrive, so I popped a cherry lifesaver. Did the trick but I'm still taking some Zofran anyway. Could the doubled dose Carboplatin (Paraplatin) effect me this way on day 6 of my 21 day regimen? At least the D is at bay...knock on wood.
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Ack! I just had a feeling of (wave) nausea after coughing today. A little background. I think beginning on Friday night, a day after my last chemo infusions, my sinuses have been going crazy; post-nasal drip, lots of mucus (sorry), hacking, dry nasal passages, etc. Then today, I hacked fairly deeply and my salivary glands went into overdrive, so I popped a cherry lifesaver. Did the trick but I'm still taking some Zofran anyway. Could the doubled dose Carboplatin (Paraplatin) effect me this way on day 6 of my 21 day regimen? At least the D is at bay...knock on wood.
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Finished my 2nd Herceptin only infusion this morning. I have to say I really haven't had any SE's from the first one. Got a script for Arimidex, they want me to start taking this week.Had my 2nd echo done, all good, and lab work this week all good. Need to have dexa scan done next month and scheduled my (rt side only) recheck mammo for November. Still having some eye issues, MO said wait at least til November for eye exam. Off to babysit for 5 days next week with twins while daughter and husband get away for their anniversary. Hope I am up to it, will probably be worn out at the end of 5 days. After home for a day hubby and I off to celebrate 42nd anniversary with a short 2 day trip to see fall colors. Everyone have a good week!
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BJL,
What kind of eye issues?
Paula.
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This is my 3rd herceptin only and every time I get flu like symptoms. I really hate it. Anyone?
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Wiegp22 - My vision in my right eye is slightly blurry all the time. I wear contacts, its like the prescription isn't right. I was due for exam in July but was told to wait 3 months after done with taxol to have it done. MO said vision changes are usually temporary so don't rush to get new contacts, hopefully it clears on its own. My eyes were very dry during taxol, used drops several times a day.
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(I posted this in the HER2+ forum, too...) As a HER2+, of course I got Herceptin. As "advertised," I also got lots of joint pain. Later, in the course of doing lots of body scans, my docs determined that I had osteoarthritis (which I'd been telling them for years but they ignored). Most of us know that Herceptin tends to cause join pain ... while on it, I crept up and down my stairs more slowly then my 90+ year old great aunt!! My osteoarthritis seems to be SO much better since I am off the Herceptin. Wondering if this is coincidence ... or anyone else out there that had osteoarthritis prior to starting Herceptin? Did you find that the Herceptin made it worse? Thanks.
HapB and others: I had bone pain before and all thru chemo - and it continued afterward. Of course, this scared me out of my mind. After some prodding, one of my docs agreed to check my ferritin levels. Turns out ferritin levels at the low end of normal for women (<75) are linked to bone pain. I got started on Vitron C (iron supplement) and it cleared it right up! I couldn't believe it was that easy. I'm sure this won't "cure" everyone but many women are mildly anemic. Could be worth exploring with your doc. I will be re-starting chemo soon and will be eager to see whether having improved iron stores decrease my pain levels while on chemo, too.
Happy anniversary BJI!
PS: I got the blurry vision thing, too. It cleared up once I was off chemo.
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Hi everyone. I'm glad I came across this thread. I started taxol (12 weeks) and herceptin (once every 3 weeks for a year) a few days ago. I had a headache for about a day and yesterday as I was walking I could feel every step whooshing in my ears and head, then when I glanced at my watch I had double vision, but not when looking up and out. It lasted maybe 10-15 minutes, then resolved. Could this have been from the herceptin? My first dose was 90 minutes, but I'm pretty sure the nurse said it will be 60 minutes from now on. I suppose I need to start a treatment and SE journal
Oh the "joys" of BC...
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Thought I would post this update: (My schedule makes it tough but) I am continuing to research any studies done on the links between Herceptin and Osteoarthritis, bearing in mind that cancer can kill us while osteoarthritis generally won't. I came across this:
http://factmed.com/report-HERCEPTIN-causing-OSTEOA...
which indicates that Herceptin is suspected to cause or exacerbate osteoarthritis. One has to be careful about what you find on the internet, but it asserts that "Between January 2004 and October 2012, 282 individuals taking HERCEPTIN reported OSTEOARTHRITIS to the FDA" which seems fairly objective. Maybe as we learn more, we will figure out ways to minimize the side effects.
Brightness456 sorry about your SE's. A journal is a good idea. My visual acuity declined on chemo but recovered once I was off. These drugs can cause so many weird SE's! Hope yours are better next round and not worse!!
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These posts have been so good and scary to read! I recently was diagnosed er-pr+her+. This is after 5 years NED from a triple negative met to the brain. So after the original TC treatment 10 years ago and the craniotomy and stereotactic radiation 5 years ago I feel like I am playing whack-a-mole with breast cancer! I had finally begun to feel like I was going to be okay then this. I recently just expanded my business and am going into my busiest season, after reading your posts I am just not sure if I can do this. I met with the MO the other day and go back on Wed. for the treatment planning meeting with the nurse and NP. When I told the MO I had read alot of accounts of bone pain from the herceptin he said he had never heard of any reports of bone pain. I am also really worried about the neuropathy from the taxotere which I avoided the last time. At 64, I don't want to spend the rest of my golden years barely able to walk. I already have some balance issues from the brain radiation. I have been frank with my kids...all grown up now and told them I will do the treatment as long as I am not sick...if I am miserable all the time it will be a no-go. I have put my time in twice on this. Is there anyone out there who hasn't had a hard time? I did as well as I could the first time, worked all the way thru, it wasn't easy but doable, but some of the SE's this time around seem a little worse and I am 10 years older. Well, thanks for letting me vent! Good luck to us all!
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embmom, I'm sorry you have to be here, but glad you have a place to vent when needed.
Lumpie, the good news is what I thought were SEs were probably just a bad head cold which is almost resolved now, so so far no SEs that I can't handle. I'm ready to call the MOif neuropathy shows up though, as that scares me a lot.
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Embmom,
For me, the side effects were temporary. I finished my last Herceptin five weeks ago and I'm feeling great. You can do this! Short term pain for long term gain. Her2 is a beast that must be conquered quick and hard.
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I have some bone pain, but I agree the worst is the "cold " feeling.
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Hello Sweeti,
I am interested in what you did for your sinuses? I am also on herceptin and have a lot of sinus and dizziness. I am stage 4 and just stated getting dizzy about the tenth infusion or so
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Made it thru 12 taxol losing about 50%hair on my head, kept eyebrows and eyelashes. Finished August16, started herceptin only August 23. Eyebrows and eyelashes dropping like crazy! Hair is growing, fuzzy gray, stubble on legs! Herceptin SE? I did start Arimidex Sept 14. Anyone else?
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Wiegp22: Due to the fact that my nasal passages are pretty dry and yet not so dry, I had to stop taking/using Flonase nasal spray. The best thing for me these days is to make sure that I drank water readily, at least 10 cups a day (hard to do). Waiting to clear my nose for as long as possible, gently trying to blow out the accumulation. Post nasal drip has been going on for weeks preceded by what felt like a cold. Today I felt a bit dizzy, but only when I tried to look up too fast to see what was in my light fixture (a moth, as it turned out). One thing that did kind of help with breathing through the nose was using my Vicks Personal Steam Inhaler that I've had for many years. Just a few minutes, once the steam started coming out, leaning my face over the opening and inhaling somewhat deeply. Gotta clean that thing a bit after use. I use mine by putting on a breakfast table and on a placemat, sitting on my stool. Can get a little dizzy if leaning forward for a time does that to you.
I also stopped taking mucinex 600mg tabs. Just couldn't keep swallowing those blue and white pills every 12 hours. Didn't really help ME, but can't say who it might. Now that fall is coming soon, I'll ramp it up by using my room humidifier (teardrop shaped). Keeping it humid indoors helps. I tried keeping windows open at night when it was cool so I could sleep, but it just made my seasonal type allergies worse. So, keeping the A/C on and changing out the allergy furnace filter monthly instead of every 3 months.
Hot tea also helped, but I'm finding that the herbal teas just don't taste like they did, so I'm keeping it simple and without caffeine.
I have never tried MyPurMist and I wondered if that really works. Or, if it's a glorified version of the Vicks Personal Steam inhaler at almost 8 times the $25.00 price of vick's.
After a hot shower is a good time to blow the nose. I find that the less that I try to clear the nose, the less I feel dizzy or light headed.
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sweetp, I use an essential oil diffuser in my bedroom while sleeping. Seems to help a lot. I also use Ayr gel in my nose.
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Oops, I forgot that I tried Ayr gel. That I have to use judiciously since when I opt to put the gel into the nose, it stings like crazy for several seconds/minutes.
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I finished TCH chemo on Dec. 11 and will continue the Herceptin every three weeks until August so I have had 1 full year of Herceptin. I used cold caps and saved all of my hair through chemo but 3 weeks after my last chemo, while just on Herceptin, my hair started to thin and I lost my eyebrows and eyelashes. I used Revitalash on my eyebrows and eyelashes and my brows grew back in three weeks. I still do not have eyelashes but see that my hair is growing back along my hairline. I am not sure if the thinning hair is from Herceptin or just the last of the chemo getting out of my body. I get body aches and fatigue starting about two days after the Herceptin infusion that lasts for about a week. I also take mistletoe (from an alternative med doc) shots and get a bump of energy the next day or so- those are done every three days. I also have nausea, palenessand the terrible stuffy, scabby interior nose that bleeds. What has helped me in this stage are hot showers, heated back massaging pad, saltwater nasal rinses, Afrin and rest/naps. I just had a double mastectomy and will have implant surgery in a few weeks. All of that pain is hard to separate from the Herceptin. I alternate Tylenol and Motrin all daylong still from my surgery but need Ambien to sleep through the soreness of the breast expansion and the Herceptin body aches. I just try to take it one day at a time. I have gone back to work but crash as soon as I get home. At least I have my nails!0
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Hi Ladies, I'm new to this thread and was looking for ladies on Herception. I finished Taxol treatments Dec. 28th, 2017 and now on Herception every 3 weeks. I am wondering what are the normal SE of Herception. I am still fatigued, have neuropathy in my finger tips, bone/joint pain, feel like have cold all the time with bloody nose, coughing up mucus. It's been 2 1/2 months off chemo. Eyelashes and eyebrows fell out after Taxol was over, have now grown back, hair is coming in slowly. I had all these SE with the Taxol treatments. I feel like it's a repeat of the chemo.
Thanks ladies for having a place to connect with others going through this awful journey. I'm over it and still have months to go and more surgeries!!!!!
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i’m nine weeks past last chemo, having my fourth herceptin on wednesday. I am so stiff, it’s unreal. I definitely feel it’s worse since chemo ended and herceptin alone. My nose is stuffed. I’m a bit short of breath, but it’s the aches and pains in my joints and muscles that are really getting to me. Also, my stomach is still playing up, i don’t know if it’s still from chemo or it’s the herceptin. Full of wind pains after meals, and smelly wind( sorry) anyone’s else had this
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good to know HapB, it’s getting to me now. Very awkward and sore
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2brandy,
I agree SE vary from person to person. Herceptin made me have a constant runny nose and very achy body. It sucked. I did a year. Finished feb 6th. Still have a runny nose. Not as achy finally.
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just did my last herceptin. in hindsight, a lot of what i thought were SE of herceptin were most likely lingering SE of taxol (dry nose, joint pain). once they finally subsided, herceptin was a breeze. i could have kept going.
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I really didn't have any side effects except some general achy feelings and a sporadic runny nose. I agree with Stephanie - it was a breeze by comparison. Also it does take a good while for all the other chemo drugs to work their way out of your system.
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