Herceptin - Quick Side Effects Poll
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Lago...THANK YOU! That made my day. It was an adjustment to accept short grey hair after having long blond locks pre chemo. What a humbling experience it was to be bald. Now I love my wash and wear do and have embraced the new look. Photo was taken end of February by husband of high-school classmate when the three of us had our annual lunch reunion. She was to my right. The miracles of cropping photos gave me this great head shot which I used on my business card, too.
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Hello my warrior sisters
I was out for a walk on Wednesday night and met a couple whom I know. She had breast cancer thought caught in time and had a few lumps removed as opposed to a full mascectomy. Her hubby is an anaesthetist. We stopped and chatted and obviously asked each other how each was getting on. I happened to mention this site and about the side effects being discussed. He said, what a GP told me years ago, that every tablet, medicine and drug has a side effect, many so slight you will not notice them. Whilst he probably wouldn't say this in front of some of his medical colleagues he said anyone who says that there are no side effects to a drug either doesn't know what they are talking about or is plain stupid. It does stand to reason that if you put an unnatural chemical into your body there is bound to be a reaction.
I know that we all speak English but you seem to speak a different English on the western side of the big pond ! I have never heard of a MUGA an ef,tx,dx or a DH. Sometime I will post all the abbreviations that have me baffled and someone can translate please lol.
Lago I agree with you that Bon looks very well in her photo but may I say you look well yourself. I would post a pic of myself but George Clooney and Brad Pitt might get sooooo jealous they might want to bring the web site down lol ! ! !
It's Friday morning - yipee - but the weather forecast for here is very poor for this weekend.
Take care all and keep your spirits up.
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Oh, Frank, I really want to see your pic now! Where in Ireland are you from? I am a second generation American, but my roots go back to Ireland. I believe County Mayo and Donegal and another which I can't remember right now. I agree, Bon, your pic is great! And so is your's Lago! I am still in the middle of treatment, so still bald. I'm 48 and was not grey (hardly any way) and am hoping my hair doesn't come back grey, but if it looks like your's, I'll be quite happy.
Weather has been lousy here for quite a while it seems. I think we're getting a break and getting some nice weather this weekend though.
Frank, there is a thread that explains abbreviations. I am not that good on the computer to find it for you, but someone will I'm sure. Here are the ones I know: MUGA: something like an echocardiogram, a test on your heart, I'm not sure of the difference, I get Echo's not Muga's; EF: ejection fraction, it's one of the things they measure in an echo or a Muga; TX: treatment: DX: diagnosis: DH: Dear Husband (also DS: dear son; DD: dear daughter; and in your case DQ (dear queen) and DP (dear princess), JK (just kidding)).
The bone pain got me badly yesterday. I guess that is from the taxol not the Herceptin though. Also getting chills, muscle pain, constipation and head aches. Not sure whether to blame them on Herceptin or Taxol.
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Thanks for the compliments. That photo is from December, 2 weeks after my 4th chemo TX (TCH) with a wig (The only time I did wear the wig btw). I don't update it because I did look really good during chemo. I want others going through chemo to see this.
But if you want to see more recent or transition pictures (these have been posted on a few other threads):
transition from Last Friday to just before surgery: linky
Wedding from last Sunday: linky1 & linky20 -
Ok so I had Herceptin on Wednesday and yesterday as expected I was pretty stiff and sore - nothing that tylenol couldn't take the edge off, but here's a new one....my teeth were achy and felt super sensitive all day!! Seriously, today they are fine, so do I blame herceptin or go to the dentist??? LMAO.
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OMG Marjie come to think of it I do remember some teeth sensitivity. My next infusion is Tuesday. I'll have to see if it happens again to me.0
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Lago - it was just too much to be a coincidence IMO. Nothing unbearable, but very noticeable.0
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lago, love the pix from the wedding, I know others have said this, but you really do have such a beautiful smile!!!
Bon - add me in, I love your pic also.
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great pictures lago!
Kay--I do think your SEs are probably from the Taxol, but you won't really know until you are done with it, and on Herceptin only. And even then it takes awhile for the taxol to get out of your system. If you can take otc pain meds, you can alternate ibuprofen and tylenol every 2 hours. This worked for me when I had the Nuelasta or Nuepogen shots. But for the Taxol, I took Percoset for a few days. If it gets too bad, be sure to call you onc's office--you don't have to suffer!
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Hello my warrior sisters
Toughcookie I'm Belfast born and reared. You probably know that Ireland is divided politically, Northern Ireland and Republic of Ireland. I'm in the North. I have visited Donegal many times but it is a while since I have been. Have driven through Co Mayo many times on my way to Achill Island which is off the west coast of Mayo. A good friend of mine has a house on the island.
As a student I spent 2 working summers in the States. 1st summer ,first few weeks in Atlantic City but most of the time in Scranton Pa. While I was in Atlantic City I met a girl from Philly and accepted an invite from her to visit her for a few days when she returned to Philly. Second summer I worked in Wildwood, Nu Joisey lol. At the end of that summer I visited Philly for a week, again taking up an invitation from a guy I had worked with in Wildwood. I then drove a delivery car down to Florida, delivered it to the owner and went to Tallahasse.
Bon whilst I was in Wildwood I met a girl from Miami who was at Florida State Uni. She left W/wood before I did to return to uni. So I visited her in Tallahasse for a few days. She was a typical southern belle - good looking, long blonde hair, steel blue eyes, a very well developed pair of lungs (lol) and a pair of legs that went all the way up to her arm pits. Seriously though she really was a lovely person with a beautiful soft personality. When I returned home we wrote to each other furiously but then it fizzled out. Long distance romances don't last.
At the very end of each summer before I returned home I spent about 10 days or so in Baton Rouge which is north of Nuu Allinns (lol) Louisiana. My big sis who is now in Canada was there at that time, her hubby was lecturing in Louisiana State Uni. I thought "The Big easy" (New Orleans) as it's called was a beautiful place.
I visted the States a few years ago on holiday but will tell about that another time.
On a Herceptin note my nails are becoming so incredibly brittle. Yesterday I barely touched a cabinet with my left thumb and the nail broke in a "V" shape far enough down my nail to cause my thumb to bleed.
I'm at lunch and it's Rod Stewart time. Take care all and take it easy.
PS Toughcookie I've never heard of a MUGA. Not saying that they don't happen here but ECGs are what I get.
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I am continuing to post to let you all know how I am doing after my Herceptin treatments. So far (after 6 weeks) I am not noticing a great improvement in my strength. I have a lot of neuropathy which requires me to take strong meds and walking is an issue. I am still exhausted most of the time and still rest a lot. My mood oscillates from good to bad. I agree with the posts above that Herceptin for some people (like me) creates and the plays havoc within the body. By the time I had my 14th treatment I had had enough near-death experiences to decide to quit. But my onc continued to tell me to the bitter end that "not one patient of the hundreds he has treated ever had SE" and I don't mind quoting him because I heard it so often.
I wonder about the issues Frank and others have with brittle nails and hair growth. One of the things that surprised me was that my hair grew back--albeit not fast but I had hair from the get-go and my nails grew like mad more so than normally. They are also very strong. It could have been one of the vitamins I was taking--but which one? I took so many. Like Bon I think I may leave my long dark hair behind (my that loss was traumatic at the time) and stay with the much more convenient short look. My only problem at the moment is that my hair has come back grey and is so curly and thick that it's ridiculous really. My color grey was icky. I dyed it. Really, I don't think I had much choice.
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Today is my last herceptin! Yeah! Can't wait for my shoulder pain to go away!!!
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Grace...congratulations! Great that you will be done with Herceptin today. I have 2 more tx to go and plan to celebrate that ending. How about you?
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Does anyone know anything about fevers with Herceptin? I had my second Herceptin treatment on Monday and Monday night got a high fever. Went up to almost 103. No other symptoms and all test turned out negative for infection/viruses. I am going to see what the onc says about it, but wondering if anyone here had any info on it. They gave me anti-biotics any way, but they are not doing anything to the fever yet. Tylenol and Advil take care of it, but don't know if it's safe to keep taking them every 4 hours. I'm scared that the onc will say to stop the Herceptin. Any info would be appreciated.
Also, wanted to say a lower fever after first infusion of up to 100, but seemed to only happen at night.
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Frankh, I live in Canada what part does your sister live. My girls Irish dance and have been to worlds in Belfast twice. I believe they are in Belfast again this year, Spring of 2012. Hope tp be going again but have to wait and see if the girls qualify. They are held at the Watwerfront Hall.
MUGA. Is a nuclear heart test to check ejection fraction. They take 5 mls of blood from your body, miix it with a radioactive isotope, put the blood back in and then take a series of "pictures" to evaluate the% of blood your heart ejects from the left ventricle. I have one very three months. So far my EF is in high 60's and holding.
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Dancermom, Are you getting the Herceptin along with your chemo? One of the warnings about serious side effects of Herceptin is as follows:
- Worsening of low white blood cell counts to serious and life-threatening levels and associated fever were higher in patients taking Herceptin in combination with chemotherapy when compared with those who received chemotherapy alone.
- Most common se from Herceptin in the tx of bc are:
- Fever
- Nausea
- Vomiting
- Infusion reactions
- Diarrhea
- Infections
- Increased cough
- Headache
- Fatigue
- Shortness of breath
- Rash
- Low white and red blood cells
- Muscle pain
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isis818 - thanks for the update, I joined this thread somewhat recently and near when you stopped and I remember reading about the struggles you were going through. Hugs to you and I hope you start to feel better soon.
Yesterday, I had my treatment and they gave it to me in 30 minutes, instead of 60. I'm really annoyed because it is such a silly mistake and there is no reason for it. The center was even't busy, not that I think being busy would be an excuse anyway. So now what? I've heard some people say their side effects are worse with shorter infusion times? The nurses were saying that some centers the standard anyone is to give Herceptin over 1/2 hr. How about others, do you get your infusions in 1/2 hr or 1hr? And mine are every three weeks.
SE so far seem to be headaches and joint pain, headaches usually the week after, so I will not know if those are worse right away. And I think the joint pain is cumulative, so it will basically be impossible to tell if they are worse from this 1 shortened infusion. I think this was treatment #8 or 9.
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My Herceptin is every 3 weeks and I get it over 1 1/2 hours. They said if I wanted to get it in 30 minutes, I'd have to come once a week at 1/3 the dose and 60 mins would be every 2 weeks at 2/3 the dose. Said the dosing was specially timed and had to be given in a specific timeframe. Just told me this yesterday with my #3 because it always makes my heart go whacko and one of the nurses slows it down to minimize it. The other nurse saw it after about an hour and hurried it up explaining it like what I said at the beginning. It took about 2 hours total infusion only, so who knows. Last time it took a good 3 hours because of how slow it had to go because of the heart issue. She even explained that several chemo medications have to be specially timed, too; but no one had ever mentioned it before. Like to know what you guys have been told about the timing.
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I get mine over 30 minutes every three weeks. DANCERMOM- I always have a fever the day of treatment. I also have a headache for about three days.
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Yay Grace!
ReadingMama I always get my Herceptin at 30 minutes every 3 weeks. I just had my 12th on Tuesday.
I got my first headache this week but I took some Exedrin and it went away so I don't think it's Hercepin related. I do seem to have the slight sniffles today… that could very well be Herceptin related but no big deal.
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I got my herceptin over 30 minutes while I was going weekly, then when it went to every 3 weeks they gave it to me over 1 1/2 hours. They told me since I was getting 3x's the dose when I went to every 3 weeks that it was given over 3x's the time. I never had a fever, but always had a headache.
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Hello Everyone. It has been almost 2months since my last post. Although I am feeling better and my disposition has improved greatly I still have good days and bad days. I have started to walk again and some days when I get home I am soooo swollen in the left knee and left arm. I can't walk for days after. I still hobble around at home. I am still getting out to walk when the pain and swelling go down. My last walk I did not swell up when I got back. I am having numbness on the top of my left foot and arm still aching.
I agree with Frank about side effects with every drug. I will be glad when this is all over. Hang in there everyone.
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Cindy have you reported it to your onc? Has it gone on continuously for more than 2 weeks? Never assume the worst. Our bodies will get aches and pains all the time. Most of the time it's not a big deal. You can't assume mets…
I have a friend from this forum that was getting headaches last month. She thought for sure brain mets. She had a scan… not mets just stressed. Another friend from this list told me that when she first got shingles she thought it was skin mets.
What ever it is you still must report it to your onc.
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There is another woman on the boards here who describes her reaction to herceptin as exactly that, bone pain. So maybe it is the herceptin.
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Sure, I'll ask her.
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Hello All
I get 269mls of H every 3rd Wednesday. Only SEs that I can attribute to it are that my nails are brittle, nose a bit runny but as I have said before I would tend towards being a bit nasally, hair has not recovered after chemo in that it is quite straight and a bit lifeless. My pic (on here) was taken just before I started last year's chemo. I have had 7 doses of H so far and thank God have not had the bad symptons some on this forum are feeling. having read what some of you are suffering I'm getting away very lightly.
Dancermom my infusion is given over 30 mins but have to stay on for 90mins afterwards to be monitored. Nurses have told me that the most common SEs during or just after infusion are wild variations in body temp. from v. hot to one patient whose teeth actually chattered due to low body temp. and blood pressure going astray.
Slainte my sis is in London On, I visited her a few years ago. I know the Waterfront Hall and have been in it many times. last time the Irish dancing world championships were held in Belfast there was not a bed to be had in a hotel, B & B or boarding house within a 10 mile radius of Belfast such were the numbers attending. It is certainly a world wide activity now, the most famous Irish dancer probably being Michael Flattley who was born in Chicago ( ?? I think). There is a woman in my office who teaches Irish dancing but as a matter of principle will NOT put her pupils into competitions because of cost. I don't need to tell you the cost of the dress, wig and all the associated paraphanalia ! !
I have never heard of anyone here, N Ireland, getting a MUGA which is not to say that it doesn't happen. Not sure that I would want anything radio active injected into my body ! When you get a MUGA do you glow in the dark lol ?
Ok take care all.
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Question How many Herceptins are you all getting. It appears I'm only getting 17 but it seems most are getting 18. Anyone know what's up with that?
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Onc said at the start 17. Nurses have me down for 18. Will take that extra one if port and insurance holds out.
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17 for me
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Lago I'm not sure if I get 17 or 18. I have just think of it as getting it for a year. I have herceptin on Monday so I will ask.
I get it over 30 min. Every three weeks. My first few injections were over a longer periods and the gradually reduced the time when I didn't have any .reactions. Funny, didn't seem to have any problems with the first few Txs now I have major joint pain .
Frank, irish dancing sure does suck the money out of us! It has been great for traveling though, the girls have beem to Ireland twice, Belfast twice and Scotland twice and one a year we go to Nationals in the USA. This year Nashville ( the hub of Irish dancing lol) and next year Chicago. My son is in a fiddling group as well and they have a trip to Ireland this summer. My husband and I are on the "freedom 95 " plan. We will be working for ever!
Cheers0
