SEs from Herceptin???
Comments
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nobleanna, ask your doctor to prescribe you a drug called "Ultram" it is AWESOME. It is a non-narcotic pain reliever. I have suffered for 7 years with excruciating spine pain. Yes chemo did a number on my bones, but Herceptin is magnifying the pain in my spine. For 7 years I wouldnt take drugs. I didnt want to be one of those mom's hooked on pain killers.
Well, the pain got so bad that in November I went back to my pain doc. He told me about Ultram. At this point I didnt care if it was addicting, I said "give it to me now". OMGosh it has saved me from jumping in front of a train...LOL
Since it is non-narcotic, it is not a controlled substance and can be written on prescript pad or called in. Most important IT WORKS!!!!!!!!
If I need to stay on it the rest of my life, that is fine with me. It is the first time in SEVEN YEARS that I dont feel like my vertebrae are digging into each other!!!!!!!!
I had a "stoned" feeling the first three days- no business driving a car-- but after that, no problems. They dont make you drowsy, which is another reason I could/would never take narcs. I have children to drive around and a business to run. I am not sleepy during the day, but when it is 10pm - 11pm I am sleepy, I can sleep through the night and I wake up RESTED , AND it doesnt hurt to rollover WOOOO HOOOOO. I take them throughout the day.
Anyway, give them a try and perhaps they will work for you too. There is a pain doctor in my sunday school class and I was telling him about me taking Ultram and he said it was perfect for people going through chemo to help with pain without "knocking" you out!
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Moody, That's some interesting info about that Ultram I hope everyone read your post.
Just wondering if anyone has felt weird and sick by taking aleve with Herceptin? It seems that everytime i take aleve i get major anxiety and feel dizzy and out of it. Or am i just fricken going crazy?????
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I am on #7 (out of #12) Taxol & Herceptin, and found that Aleve really helps for the pain. Tylenol did nothing. I do not think the Aleve is affecting me otherwise, but I have been getting Ocular migraines. Anyone else get those?
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You are not going crazy. Who but we, ourselves know our bodies and that something is not right? Give us a bit of credit. And when it hurts, it hurts. geee maneeee !!!! I have had increasing bone aches with herceptin and no one can tell me it is not the cause. The day after a tx, I feel like the tin man in wizard of oz. Neuropathy is definitely from herceptin, because for the 6 weeks I was off it for surgery, I had almost none. Since I live alone, I hesitate to take anything stronger than tylenol, although I have taken a tylenol 3 before bed to try to get some restful sleep, and I would never drive the car while taking it. I know at least one person who had major stomach upset w/H, but she was also told it is not possible. When she stopped, it went away. Go figure.
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Well these side effects are real, regardless of their origin. By that I mean whether physical or psychosomatic, pain is pain, sick is sick, ect. And for a dr. to "act" like it is all in our heads is certainly NOT going to make the SE's go away!!!!!!
As I said above, for me, the first 3 days on Ultram, I just couldnt drive. Thanks goodness I had started it on a friday, so by monday my body had adjusted and the "stone" feeling was completely gone......as was the bone pain!!!!!! But as everything else in this life, it won't work the same for everyone. But I say, if you have tried everything else, you have nothing to lose by trying it too. If it works then AWESOME, if it doesnt, mark it off your "I tried that" list.
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Thanks you guys I am almost giddy with relief over this site. Yes I still have the bone pain but I know what may be causing it makes me feel so much better. I am better able to handle it if that does not sound weird. I am in just great relief almost, I go for scans next Monday and will know by Tuesday the results. I seriously thought I had bone mets and not to say that I don't but its with a lighter heart that I go into the scans. I think I wouldn't have thought it so much if I was not stageIII it just gives you that little exta fear at least with me.
Moody- I am definatly going to ask for this cause what I am on does not work unless I take alot. And it makes me feel sick. Like you say I have tried other things and boy would I be a happy girl if this was something that worked. Thanks for the reat tip!!! I love your picture your very pretty and I bet your just as pretty now if not more so. Something with having cancer really does bring out our inner beauty. So you must be ready for the runway!!!!!!!!
Hugs to all,
Bridget
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Bridget, I will pray for your scans Monday, but most importantly, I am glad you are more at peace about them! I am also glad that I was able to give some advice that might be useful. Makes all this crazy worth it.
Um about the beauty thing.........NOT! LOL I have short, dark brown, curly hair and no it does not look good or cute or stylish. But, I am staying distracted by focusing on my new boobs!! LOL, my revision surgery was a HUGE (no pun intended) success!
I do have people tell me I have a "glow" about me....I tell them it is just the "Bare Minerals" make-up I bought.
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Hi Everyone,
Just thought I would say hello and wondering how everyone is doing. Has anyone had any luck with their Onc. believing their SE are from Herceptin???? I think a new study should be done with all of us girls that are now on Herceptin. I am going to stay over night in Portland due to the fact I have so may appointments scheduled and have one the next day. The good thing about that is the hotel is great about giving Med discounts and the have a huge hot tub and heated pool!!! It makes me feel so good. I wish I had a hot tub at home. On Tuesday when I see my Onc. I am going to determine if I contiue on with her. Its a pain in the but to switch but from the start I have never felt comfortable talking with her. And I am pretty easy going. But maybe I will just wait till I finish Herceptin cause I get to do 9weeks here in my hometown and I don't have to see her as much. Its so hard you want the best but I really feel we should have formed some type of relationship by now. Whether she is warm or fuzzy or not. I have been through alot and she knows this. I know her job can't be easy and that she probably has to feel this way to do her job but its just so hard when you want to have the thought that she really cares about you. Its not like we are in a big city. Well I will stop blabbing. I think its the nerves kicking in for my scans coming up. I just need to breath!!!!!!
Hugs-Bridget
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Good Luck Bridget, let us know what they say:) I see my Onc on Wednesday, will definitly be asking the herceptin causing the bone pain.
Laura
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Thanks Laura,
I am in panic mode right now! I sure hope it is the Herceptin. I am going to keep saying that its the Herceptin. Think POSITIVE!!!!! I will be finding out the results Tuesday afternoon. And of course there is a huge storm predicted for Tuesday so I may have to stay over night but hopefully I will beat the storm. They keep changing their minds on it. Some have said possiable rain mix another has said a foot of snow and others have said possiable 2feet of snow! Crazy and they are not sure when its to start. Oh wel I will just stay at the hotel until I can drive safe enough to get home! I bring my lap top and if I can figure out how to access it at the hotel cause its wiifi I can let everyone know!!!
Thanks Laura for caring and thinking of me, and I hope you too get some answers!!!!!!
Bridget
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Ugh i know, scanxiety, i hate them!!! Thats why i havent gone for my lower back xray yet!!!! I will be thinking of you Bridget! Hoping the scans come back nothing!! I have read about many people with pain in there bones from the different meds!!! Its good that your following up! Now I need to do the same!!!
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Bridget: I'm also keeping you in my prayers for Tuesday. Of all the experiences I went through in the last 13 months, the PET/CT caused me the most anxiety because I, of course, had myself convinced that it had metastasized. I had my muscles so tense that I had pain shooting down my arms that would wake me up in the middle of the night. Talk about the mind-body connection! Well, that scan turned out fine, and now I finish Herceptin in April and have to have another one - not looking forward to that!
Wishing you B9 results!
Sue
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Hi ladies -
I just wanted to weigh in and say I have a lot of these side effects but my ONC blames them all on the Arimidex, I see that some of you are ER+ and was wondering if you were taking that med as well?
I have a weird symptom, wondered if anyone had a similar experience. I have a tingling lower lip, I have heard of neuropathy in fingers and toes but not lips. It is very slight but there, and of course in my heightened anxiety state I worry about Brain mets or something equally scary?
suemed I see you are from PHX, wondered which ONC you see that has you doing scans? My Onc does not believe in scans for early breast cancer after the first initial scan.
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Im not ERpos, and ive noticed alot of people saying they are getting the same side effects from Arimidex. Makes you wonder if they are getting Herceptin too, or if some people are just prone to side effects more than others?
Laura
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Okay - I'm back and still complaining about the constant, constant drippy nose. I'm also taking Avastin, but since adding Herceptin, it's been much worse. I can't go anywhere without a box of kleenex, and the end of my nose is raw and red and itchy. I hate to think what I look like to other drivers at a stop sign (fingers in my nose the whole time !). Nothing I've tried seems to help. I put vaseline or neosporin on all day long (course everytime I blow my nose it comes off) and I also sneeze a lot. I've tried Claritin (no improvement), and nasal washes (like the NETI pot). Anyone have any suggestions? Am I the only one with the leaky faucet? Onc thinks I may have a "slight" allergic reaction to one or both of these drugs. Ya' think?
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My nose is not as bad as yours, jeanne. Every once in a while it lets loose like a drippy faucet. I asked if Sudafed (red box) is ok and onco said yes, but I do not feel the need for it just yet. Sudafed lasts about 4 hours and not very heavy duty type of medication.
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I talked to my oncologist today,and he said a while ago he wouldnt believe i would be having joint and bone pain from herceptin, but more and more he has seen ladies coming in complaining of it, having scans, and nothing there. Im going to do a full body xray (yay - NOT) to be sure, and he put me on a combo of vicodin and naproxent, every 12 hours.
Laura
PS anyone heard from Bridget since she had her scan?
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I am just coming off Taxol + Herceptin and had my 1st Herceptin only last week. So, I still don't know what is the Taxol and what is the Herceptin. I have had a bloody nose since I started this and kind of think thay is the Herceptin. My Onc has told me not to expect many side effects from the Herceptin but you know how that goes...........
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How often are you all getting a MUGA scan or echocardiogram? I will get a MUGA every 3 months.
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Hi folks,
Anyone get low blood pressure right after hercepton?
Jo Anne
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Hello ladies, sorry for not keeping in touch like I should, and Luckyaka thank you for letting me know I'm not the only one that gets weird hand problems. Since that day the three fingers on my right hand feel horribly painful like they have been stung by bees, somedays it isn't as bad but boy when it goes full blast, I can forget using that hand. I also have a great big spot of tingling, like it's been frozen by a dentist on my leg above the knee, on the outside, At first it was the size of a fist, but now it's the size of a cantaloupe, I hate it and find I get up and slap the skin to make sure that it's live skin, I don't know how else to describe it. And usually for at least three days after my treatment it feels like I'm going to crack my foot when I walk, it's like it's dislocated, and slowly that disapears, but the shin pain I get every night and it feels better if I get out of bed and walk on it. Strange. I believe we need to be taken seriously about our side effects, we are not crazy women, they are giving us a newer treatment and since it's so good for us none of the oncs and drug companies want to listen. I finally had a nurse that listened to me on Mon. and actually shared some stories (quietly) of other women saying the same things, she writes them down but I don't know if anyone reads it. Shame. I am having two very important scans next week and hope that they come out alright, I wish everyone on this site and our thread the best and I pray for us all eveynight, even though I'm not on like Ishould be. So Big hugs everyone. Have to nap now.
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Hi! I see some old friends here.
This is a very reassuring read ....doctor says Herceptin has no side effects....as if I would stop taking it even if they were worse.
Finished TCH in mid October and have Herceptin until July. Finished radiation mid December. Started Arimidex 2nd week of January.
It's been hard to sort out what causes what.....I don't go anywhere now without a tissue. My feet and knees do hurt and I hobble around like a little old lady after being still even for a short time.I am really tired by the end of the day. Am trying to keep up with at least a mile/day walking.
Although I didn't really have mouth sores during chemo, I have them now -- don't see anyone else...is there anyone else? It's like my mouth is so dry that my cheeks stick to my teeth at night and I wake up with inflammation. Enough that my jaw hurts.They gave me a concoction of lidocaine, benadryl, and Maalox to swish around but things aren't healing.
My nails and cuticles are dry, thin, and splitting. I have nose bleeds for dramatic (comic?) relief at boring meetings. I'm hoping that this IS the Herceptin since there's an end to that. It's a bit discouraging to think of this much achiness going on for another 5 years -- but, considering the potential alternatives I can live with it.
Has anyone else seen a nutritionist for post-chemo dietary wisdom?
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Hi Everyone,
Sorry its taken me so long to post. The stress of it all and other stuff had just caught up with me.
All Scans NED!!!!! Phew! And I think my Onc. has seen the light on my SE! I am also excited to find out I only have 7 more herceptins, I thought I would have to make up the 8 I missed but she said no. So begone boneaches!!!!
Good-luck to you all that are going for tests and let us know, also good to hear others are getting somewhere with their onc about SE. For the drippy nose I got it to and it seems like its worse when I go outside or I am moving around alot. It is definatly annoying I wish at times I could just stick tissues up there, but I think I would get to may stares LOL!!!!
HUGS-Bridget
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Hi all,
I am new here, but really appreciate seeing all the listed SE's!!! I too have many of them, had to be kicked out of the Herceptin progarm after MUGA scan went from 52 to 35 (I started pre-chemo at 69). I have horrible leg/back pain; numbness in different areas that comes and goes lips, arms, legs, face....T6-T-7 disc that is overgrowing into my Central Nervous Canal (Nuerosurgeon, Orthopedic surgeon and Physical Therapist all say not supposed to happen in the T spine, they have only seen 3-4 cases all have been chemo, radiation and herceptin patients, they are not sure what to do about it, not sure if disc material will keep growing or shrink, I am going to try a Steroid Epideral Injection, can't stand the pain anymore, but signing one more release, this one for possible parralyise terrifys me!)...loss of balance, eye sight problems, exhaustion, and "episodes" for lack of a better term; turn bright red, sweat profusily, have trouble breathing and feel like I am going to pass out. The Cardiologist says I do have resting tachacardia arrithmyia (again did not have before cancer treatment began) but says other than that my heart tests look good and yes he checked twice...a good Dr. He saw some of these "spells" and agrees it looks as though I am having a heart attack...but am not...and no it is not anxiety...it only lasts 2-5 min's, then get very low BP...I carry salt packets...picks the BP right up. I also wake often at night with arms or hands tingling or completely numb...have had all the tests, they are calling it Nueropathy...no time limit for when or if it will go away....
Breast Cancer 11/06; chemo 2/07-4/08 (includes what I had from Herceptin; radiation 1/08-4/08 still waiting to have a life again....
I have given this web site to the American Cancer Advocate in our area....she said she will pass it on to the Dr.'s and ACS....
Tks for listening...rose 4
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Hi All
I've just had my 13th Herceptin (started during taxotere last August, tax finished in Oct) and so far my Onc team are putting all the following down to taxotere (surely I should be past all that now) or Herceptin:
painful shoulders and arms with difficulty in movement like getting dressed etc. and drying after a shower
pain in knee
pain in fingers
weight gain
fatigue
the list is so long the paper wasn't long enough !!
Surely its not just me with all these, I see some of you with pains, what about weight gain? Does it go once Herceptin is finished.
My heart check is 67% - I'm not sure if this is a MUGA or not, I had a nuclear injection then a scan which was a bit like an MRI except not so long or claustrophobic. Is this a MUGA?
What pain relief is best for all these pains I've been trying various types and nothing really seems to help, now I've been given ketoprofene.
Nice to air all this hope you are all ok?
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Hi need2no,
Just jumping in here. Unfortunately the chemo pains can last awhile. Weight gain should have stopped when steriods stopped. It sounds very much as it you are on an AI like arimidex, aromasin or femara. I had taxotere + herceptin and then continued another six months with just herceptin. I had constantly watering eyes and a runny nose. I also had the bone pains, but I put them down to arimidex. After one yr I couldn't not take it anymore and I switched to aromasin. The pains are just as strong but they no longer are in my hips and knees. My hands ache and I am fighting the weight gain. I finished herceptin one yr ago. The runny nose and teary eyes have quit. I take curcumin, available in health food store, for the pain. It is natural and has no side effects. It has allowed me to continue working which is necessary for health ins. i hope this helps, dear. Sending healing thoughts.
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thank you Sedosa, no I'm not on an AI, just Herceptin. I am also diabetic and that is going all over the place so maybe that doesn't help the weight either.
All in all it seems the battle to win continues
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I too started getting muscle and joints aches/pains. Never had it when I was taking the chemo (TCH). It started after I started getting the Herceptin every 3 weeks. My eyelashes even fell out (which never happened on chemo). I guess I'm hoping the aches/pains are from the Herceptin, also had saline implants in around the same time. Last chemo was Jan 8th, Herception every 3 weeks following and implants Feb 17th. I first thought I was out of shape; but since going on walks and excercising; I'm still achey. I feel old for 43. Also seem to have more hot flashes. I see my Onc next week.
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http://www.oncologystat.com/cancer-types/breast-cancer.html Can someone anyone out there help me fiquire out this study and the final numbers. I am so confused.
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MareJo426 I have the blocked ears and terrible sinus problems.I have been using a Neti pot AM and PM and think it is helping a bit. Jackie
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