Herceptin - Quick Side Effects Poll
Comments
-
So glad to find this site, after being told there were no side effects for the last two years... constant nose blockage/infection, nail beds halfway up dead and continually pealing, splitting and tearing. Also major joint problems, but have history of rheumatoid arthrits. After treatments, have muscle and tendon pain and can't sleep for a couple days. I really wish the oncologists would have a little compassion about these issues rather than denial!
0 -
I started herceptin in May 2010 and will continue every 3 weeks until April. Herceptin was followed by 3 months of A/C and 3 months concurrent with Taxol. I cannot tell if side effects are from herceptin, radiation, surgery or remnants of chemo. I do have nasal issues. Mainly dryness and giant hard boogers forming(sorry could not think of another word) Joint and foot pain is sporadic. I was attributing food pain/numbness to taxol. My Onc swears herceptin is the miracle drug as well.
I have a question... how do other refer to herceptin infusions to BC illiterate friends, coworkers and family?? I tell my friends and coworkers that its chemo but I know technically that is incorrect. I tried explaining its an infusion of a biological agent, not chemo but similar, blah blah blah. I feel I am misleading folks but I don't know what else to call it. When I say "oh I have herceptin today" I get a blank stare.
0 -
I just called it chemo, but told them it wasn't the hardcore stuff.
0 -
I called it a drug.
Diagnosis: 6/2/2009, IDC, Stage IIa, Grade 3, 1/17 nodes, ER-/PR-, HER2+0 -
I tel them its a targeted therapy, not chemo, for my specific type of cancer. Many have heard of Tamoxifen, so I tell them it's like that, but for Her2 positive breast cancer.
0 -
tmarina -- that is a smart answer!
0 -
I'm so glad I found this site. In January of this year I was diagnosed with Pagets disease and underlying cancer. Thank God it was detected early. I have had 7 weeks of radiation, then herceptin. No chemo. I began herceptin in early July, every 3 weeks. My oncologist told me I might have a few mild side effects and he listed them. I'm interested in the runny noses I'm hearing about. I have had a runny nose for years because of allergies and sinus problems so that's nothing new for me. Can't tell if the herceptin is making it worse or not. I've had some chills periodically, fatigue, especially the day of and day after treatment. Also lack of appetite until recently. I'm given a pill for nausea and benedril before each infusion. I have joint pain, but I know part of that is from arthritis. I take celebrex which helps. I had a heart scan before starting the herceptin and will have one every 3 months while on it.
Besides the usual SE I'm haveing cognitive problems. I told the PA that I thought I was just getting old. She said no; that it's probably from the treatments. So I'm in cognitive therapy. It's helping. After 2 weeks of sessions I can see an improvement. Also one concern that my PP has is a decrease in kidney function. I mentioned that to my onc. He looked back through my records and noticed that there had been a change since Sept. That isn't a SE that I've seen listed. He looked it up on his computer and could find only one reference to kidneys and herceptin. It stated that there had been a few cases reported of decrease in kidney function among patients on herceptin, but it wasn't determined if that was the cause. He wants me to see a kidney specialist. If there seems to be a chance that I'm experiencing a rare side effect he (my onc) will take me off it. My heart function has decreased by 3%. If it goes down by 10% he'll stop the herceptin.
It's so good to read the posts here. I haven't read all 13 pages, but maybe I will in the next few days.
Laura
0 -
I tell people that the Herceptin is a biological target therapy that is an infusion. No one seems to really know what to say.
As far as side effects, my feet hurt terribly the first two days after treatment. About a week after that, I have terrible joint pain in my knees and elbows. My fingers hurt all the time, that must be from the aromasin. HOwever, my joint pain and fatigue run a course like chemo so I believe it is the herceptin that causes these side effects.
0 -
I attended a patient advisory board meeting for Genentec, makers of Herceptin. They are the ones not wanting to label Herceptin as chemo because they are afraid that patients will not take it if they perceive it to be chemo. (Yes, some women are actually turning down therapy because of the wording!) Ye, it is a targetted therapy, but it is chemical in nature. No getting around it, Genentec, and it has to be given along with chemo so why sugar coat things?
Herceptin is chemo because it is chemical and that even Tamoxifen is a chemo drug because it is a chemical alteration of your body. This comes from Network of Strength's glossary of terms.
My side effects were worse, of course, during the first 5 1/2 months while I was also on TC, so I can't really say which drug was causing what. I do know that once I requested that I not have to take the Benedryl (on a day that I had a driver with me) to see IF I would have a reaction and then if I didn't have reaction I requested no Benedryl so that I could drive myself to and from treatemnt. I got Herceptin every single week for the first 22 weeks and finding drivers for that many visits (my infusion center was 70 minutes away!) was a burden. I didn't have a reaction so started taking myself after that. After 22 weeks it was every 3weeks until the completion of a year. Drippy nose, scabs in nose, heart function drop (10% overall but never during a 3month intervol), seemed to be my only side effects. Joining a gym and adding exercise to my life brought those numbers (MUGA) back to above 70!
0 -
Koryn - I see your point and agree with it. But I have to say that when people say "chemo" the image is of a drug that is overwhelmingly difficult to get through and that can cause extreme reactions like hair loss, nausea, and extreme fatigue. Herceptin is not as bad as that so for me, saying it's a drug is a way of reassuring my loved ones that it is easier to bear. It is far easier to bear than chemo was. The SEs are annoying but did not require the kind of focus to overcome them that chemo did. The worst danger is the risk of heart damage (nothing minimal there) but there are plenty of drugs in the world that carry the potential to damage while healing in a similar way... so for my money that still makes Herceptin more like a drug than traditional "chemo".
0 -
Does anyone else's cancer breast turn pink, red, rashy, or splotchy during treatment? It's also swollen. Chemo's obviously working, so I wonder if this could be breast lymphedema. I know breast lymphedema is usually caused by surgeries but I read somewhere that it can also be caused by cancer and treatments.
0 -
Redwolf I believe it can be caused or aggravated by chemo as well... but I don't know much about LE (like I don't know if red and rash are signs of it, though I think not). There is a board here that deals with LE and has a wealth of info. You can search "LE" or search the name Binney on this site (I think that's how she spells it)... she and a few others started an LE website with tons of info and she (and they) are very knowledgeable about the subject.
0 -
Tomorrow I receive another Herceptin treatment. The past 21 days have been on the whole quite bad. Essentially it is this battle between shaking with chills and being on fire at the same time. Yesterday was about the worst day of the lot since I felt as though I was dying. It is as though my body is dying. I can't describe it. This terrible feeling of malaise hovers over me on these very bad days. True I force myself to swim each day even when I'm shaking with cold. And maybe I'm too hard on myself. But everyone out there seems to be so upbeat about their encounters with Herceptin and so I tell myself I can do it. I can do it. But last night I wondered if I should continue as I lay there unable to sleep again shaking and hot. Does anyone have symptoms this bad? Is it only me?
0 -
isis818-->I'm so sorry you are having such a rough time! It sounds like you aren't getting any good days inbetween treatments. Make sure you talk to your onc tomorrow, even if you aren't scheduled to see him. There might be something he can give you to help. Maybe something else is causing the problem. Don't worry about how others are feeling--everyone is different! If your onc. doesn't take you seriously--find another one! Or see your Primary doc to see if there is something they can do. DON'T just continue to suffer!
It is important that you do what you can to try to stay on the Herceptin. But if you can't find any relief, then you need to do what's best for you.
Please post again to let us know how you are doing, or PM me.
take care!
Tina
0 -
Isis -- Were you given Benadryl with the Herceptin? It sounds like a profound allergic reaction. I agree with Tina: you need to discuss this with your ONC.
0 -
Isis, you didn't mention what protocol you are on--the weekly dose or tri-weekly. That might be another thing to look into--maybe your body could handle the smaller, but more frequent doses of the weekly herceptin better than the large dose every 3 weeks.
0 -
isis - I also have chills with herceptin. Lots and lots of chills, fatigue, headache, aches, nausea, lack of appetite. But, do you think I could lose weight...oh no! :-) I told my Onc. about this and she prescribes some premeds for me - tylenol 650 mg and benedryl. She said I could use these meds for a few days afterwards as needed also. This may be something for you to check into.
0 -
Hi HER2+ gals. I'm not sure which of my SE are from Taxotere/Carboplatin and which are from Herceptin except for 1: bloody nose. I started the THC on Oct 5th. I seem to them it after 1-2 weeks for a few days.
0 -
I just finished my last herceptin at the beginning of October. It will be interesting to see if my crusty nose boogers go away and if my hair starts growing faster now that I'm done. THose were the two things that (I think) were from herceptin. Even the hair on my legs didn't grow very fast. Yes, that was kind of nice! I only had to shave once a week!
0 -
LOL Weety -- I had my last one on Sept 20th and it looks like the crusty boogers are finally gone (so annoying)! Can't tell if hair is growing faster or not but it is definitely growing!
0 -
Had my 10th Herceptin today--2nd on the tri-weekly cycle. Last time I just felt tired, this time tired, headache and a little nausea. I usually feel tired the next day too, so will plan on taking it easy--except for running to rads and babysitting my grandson (13 months old!). Maybe I should just nap now.
0 -
I am on a tri-weekly schedule and have completed my sixth dose. I thought of once a week but that makes a lot of trips to the hospital and just going there every week would be a downer. It's something I will discuss with my onc. I thank all of you for being there for me. To answer the question of whether I take solely Herceptin or with something else--it is only Herceptin that I take. Letrozole is a separate pill that I also take daily. Today is the day after the infusion. Today I didn't swim. I could hardly get out of bed. It will be a struggle to get through today.
0 -
I hear you isis. I had my 11th infusion on Tuesday and am still tired. I'm listening to my body and resting alot, and my Dh continues to help with the house. Bless him.
lago - I had the bloody nose on TCH also, which is unusual for me as I never have had that before. I upped the humidity in my bedroom at night, and it seemed to help. I think because the tch dries us out so much, that it has to affect the sinuses. JMO.
0 -
BTW for the nose bleeds I use Vaseline on the inside of my nose. Just enough to soften the nose not gobs of it. It really has helped… a lot
0 -
It is really interesting for me to read about the side effects. My doctor insists there are none except the possible cardiac side effects. I am almost finished now so I will soon see if the joint/bone/muscle pain goes away. I have also had the occassional nose bleeds and fatigue. They say it could be left over from the chemo. I finished that 7 months ago so I doubt that. They also say it can be caused by the chemo induced menopause. I have plenty of friends who had immediate menopause from hysterectomies and none of them experienced these side effects.
When I finish I will report back and let you all know if these side effects go away. I sure hope so.
0 -
First thing my onc said when I told her I was having nose bleeds (yes plural) was… "That's from the Herceptin. We have no idea why that happens"
0 -
Hi Isis,
your side effects may be from Letrozole after all. I read that some women had to switch to Tamoxifen because of intolerable side effects of the specific aromatase inhibitor (Arimidex, Femara ..).
For me, the lack of energy is definitely from having less estrogen (not to mention mental and cognitive problems). Law estrogen may also cause a stronger immune response to Herceptin (chills, runny nose - women sometimes experience wacky allergies during the menopause).
Anyway, with time, immune system will tolerate it better (gets used to it). You need some more encouragement and trust in the treatment. HER2 is aggressive and I would not give up on Herceptin easily. In my case, even a microscopic invasion managed to spread to the lymph node - and you have 1.8 cm .Jenna
0 -
Yes, Jenna, the SE could indeed be caused by Letrozole and I will take this up with my onc. I'm not too sure how your mathematics figure in this since your signature line states that you have 6 cm. and I have 1.8 cm. Somehow I'm not translating this mathematically. Cm's and mm's are not my bag. Inches I can cope with.
Nonetheless, I take however much I have had and you have had removed seriously and I agree with you and the others that I have to be braver than I am. So yesterday when I was on fire I thought of it as God's radiance. Grace from heaven. It helped. 0 -
Just finished 12 weekly infusions of Taxol/Herceptin. My MUGA went from a 51 in Sept. (started with a 66 in April) to a 38 today!!! My oncologist said I was lucky I got my 12 weekly infusions in because I was done with Herceptin for good. He's never had a patient that had heart problems (which I never had until I started A/C in April) be able to go back on Herceptin after a drop in heart function. I'm scared to death! The last three months I've started walking 100+ minutes/week and visit the gym (a ACS sponsored class at a local gym-light cardio and 1 hour of light circut training with yoga and relaxation thrown in). Just today I walked for 30 minutes,brisky, never out of breath, in fact I'm in better physical shape now than I've been in 30 years. I certainly don't feel like I'm in "heart failure"!
I've read that several of you are taking Coreg or Enalapril (and CoQ10) to help your heart function-which I"ll mention at this week's appointment. Any other suggestions (in addition to asking for a referral to a cardiologist) for my MD questions?
Thanks to everyone for your side-effects and advice.
0 -
Elena -- How is your iron? Someone mentioned to me that the MUGA does a better job of reading ejection fraction if there is iron in the blood. And I was anemic after my exchange surgery (for some reason) and was taking a lot of iron pills and sure enough my MUGA went up last time I had it (from 56 to 65) -- which was after several weeks of daily iron pills. I am not on Herceptin anymore so no more MUGAs... but I found that interesting.
Anyway it's good you feel well and are active! As I understand it once you go off the Herceptin you should improve.
0
