Herceptin - Quick Side Effects Poll
Comments
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Thank you - I will still be here!!!
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Omaz A big congrats to you on finishing the last Herceptin!!! Must be a wonderful feeling:) I have been reading your posts since I was first diagnosed in late November and you've helped and encouraged me since the very beginning-so glad you will still be here for consultations and cheerleading
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Just wanted to mention that I am now just 8 weeks past the year long stint of Herceptin and finally seeing my hair grow a bit faster and fuller and my nails may even be getting stronger. That's such a welcome change! Wanted all still going through the tx to know there is light at the end of the tunnel. (And, no, it isn't a train.) Hugs and best wishes to all. Bon
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Bon - Good to know the nails firm up again. Mine look fine but are so soft that I can only keep them super short! I am hoping some of the achiness goes away too though that could be from lack of estrogen. Hugs back to yah!0
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Way to go OMAZ!!!!
On the nail side - I can finally say that the splitting and thin nails seems finally have gone away. About 8 months after last Herceptin and they have finally stopped splitting.
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Omaz - yay for the big finish! Sorry I was late! Just had #10 today, can't wait until I am where you are!
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Thanks so much dragonfly, stlcardsfan and SpecialK!! specialk you'll get there! stlcardsfan - Hi! How are you doing? 8 months - wow but OK I'll take it.0
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Bon - I would LOVE my hair to start growing a little faster!! I am keeping my nails cut really short for the time being, they seem so soft and "bendy".0
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Hi Bon - How are you? I have not talked to you for a while - don't know if you rememeber me. I went to the MIL b-day party and it was all fine!
My nails are actually pretty good except for the one that is pretty bad. I went to H#10 today and MO looked at it - he said get thee to the dermatologist pronto. It is lifted and looks greenish where it meets the finger at the top. The finger is red from the first knuckle to the tip and the joint actually hurts. Yuck! The other 9 are fabulous! Hair is still meh, though.
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Majie, I was pleasantly surprised when my hair started to grow more quickly. I think it was noticeable about 4 weeks after the last Herceptin. My nails, however, are another story. Since they split lengthwise and are like paper I have to keep them super short. I just think that both index finger nails have seemed to get stronger and aren't splitting as badly. Maybe the other eight will follow along.
And K, of course I remember you. Wondered how you were doing and glad to know you're more than 1/2 way through with Herceptin. Sorry to hear about your nail issue. Sounds nasty and probably infected. Hope the dermatologist is able to get it under control. And glad you went to that party. Was it easier than you thought? Hope so. Hey, we are lucky to have dodged Irene here in Florida this week. Hoping the rest of the season we'll be lucky, too.0 -
Bon - I am glad I went to the party too. At the somewhat 11th hour I decided to do a cookbook as a gift for MIL. I was only 3 weeks out from last chemo so I was wiped but I rallied all the daughters and DIL's and put together over 100 recipes from my MIL and from all of us and all her grandchildren, secretly. It was all bound and laminated and DD did the cover art. Everyone cried - so success! Fortunately, the focus remained on her - I tried to speak to people individually so there was never a group discussion - they were just glad to see me and I was glad to see them. We are lucky to have dodged Irene but my DH drove up to his parent's house in S. Carolina to help them if they are hit. They live on the water, and are 80 & 86, so he felt like they shouldn't be alone. They lived in Miami for 30 years so have lots of hurricane experience. Their house survived Hugo - but a lot of time has passed and they are older so he left this morning. What a good son! That is why I married him. I sometimes worry that we are due for a bad storm here - my naturally pessimist/realist personality at work!
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Congrats to all that have finished Herceptin. I still have 49 treatments left...weekly for a year...so I'm counting it down in how many treatments left. I haven't noticed any difference in my nail growth still growing like aways. On my hair growing back it's growing but I can't tell if the herceptin is slowing it any seems like it growing fast to me. I'm am taking biotin and use nioxin shampoo and scalp treatment.
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Wow, Judy, seeing that big number of weekly tx to go seems so much more formidable than having 18 total when doing them every 3 weeks! Not sure why some areas choose one regimen vs another.
Don't know if the weekly Herceptin experience might produce slightly less hair and nail issues or not. But being 8 weeks out there is a truly noticeable difference in both. Makes me feel hopeful that ghe aches and stiffness will subside, too.0 -
Judy: I have a full year of herceptin ahead of me too. Weekly for another 6 weeks then triple doses every three weeks until the end of July 2012. Seems so far away.
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I am close to you. I am going until the end of may. Worried about Irene. We're in philadelphia and my dh is going to pick DD up from camp today, but she haw performances there that won't be done until about 9 pm Saturday night. They were going to stay over but with the storm decided to leave ASAP. I think the forecast got a litlle better for us but the storm is going to hit us pretty hard I believe.
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Wow....numbers are too high for the weekly doses!! But that being said, a year is a year...I thought my rads would take forever because that was daily for 33x but it went by like a flash. I think the weekly regime of herceptin, same as with other chemos is not so dose dense.
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In The Chair at The Spa Chemo as I write. Feet up, port plugged in, listening to Pandora Radio on my iPhone and working on my laptop. I do love the uninterrupted "me" time. Too bad I had to get BC to get me some of that. LOL Oh well, price for everything these days.
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Ah yes, alone time at the Chemo Spa, LOL!!! You're right Ellenquilt....I'm sure we could have figured out an easier way!! I do love the warm blankets and the cookie lady, though.
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I am new to herceptin and have a question. I only found out about a month ago that my status had changed from negative to + and have just had one treatment, three weeks ago Wed. I am on the 3 wk schedule and actually unless my ins gets it worked out with the onco's office I am not going to be getting it again which I know sounds crazy, but $9,065!! I could not afford that for long.
Ok, my question....if I do continue on herceptin, do you think it is going to screw things up a lot if I get it two days late? I have an appt with another dr I have been waiting to get in to see and could not do both since they are too close in time so I am moving the herceptin to Friday instead of going on Wed. Of course all of this hinges on my insurance paying, plus I dont even know if it is going to work for me. So many unknown factors when dealing with cancer.
Ooops. only now went back to read the stipulations that go with this thread so I will try to find another thread to ask this question also. So far my SEs are none and as I stated I get it every 3 wks and have only had one treatment.
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Marybe - From what I have read herceptin has a long half life, in fact I think it takes a couple months or longer to get 'out of your system' after you finish treatment. Also, I thin genetech has a program to help folks who need herceptin but can't get insurance coverage - you could contact them directly if the need arises. Good luck! I like your picture.0
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MARYBE...Do not fret about a few days gap in Herceptin tx. Sometimes it is delayed weeks due to heart ejection fraction issues and it's not deemed to be a problem with it's efficacy. Unfortunately I am the Queen of insurance snafus and the docs worked with me to get in the doses whenever my health and insurance would allow. Your docs also may be able to get the manufacturers of Herceptin to 'donate' the med until your insurance gets worked out. The opportunity to receive Herceptin is fantastic...all my docs (BS. RO, MO) say it a miracle drug. And that's from guys who've seen great outcomes with Herceptin for women with not very positive prognoses. Try to stick with it if you can. Best of luck. Bon
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Sorry to hear about the insurance troubles. I am sure your onc's office will get it worked out. I have only had 5 perception txs and most of them have been delayed. Because of having pnuemonitis, Monday holidays and vacation. My onc said that a few days late was not a concern at all.
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My onc said they don't like to have any patient go over a week delay, i.e., 4 weeks rather than 3 is okay. Sometimes there are times when it can't be helped, but a day or two doesn't even matter she said.
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As far as I can tell, there is no data that says a longer delay between Herceptin tx means less efficacy. So for anyone facing a delay, don't be discouraged or alarmed. Herceptin given at any interval is better than no herceptin at all. Onward and upward. Hugs...Bon
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Bon, you're right. I wouldn't hesitate to have time off between infusions if it were needed. I had to interrupt chemo a couple of times. I was only relaying what my onc said the preferred Herceptin trt is, not that it had to be done that way. It's like chocolate to me: any chocolate is better than no chocolate.
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Yes, Fitz33, I agree. Some is certainly better than none when it comes to Herceptin AND chocolate!
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I read that the half life of herceptin is ~28 days and it takes about 18 weeks after the final dose to get out of the body.
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18 weeks! Wow. That's good news - at least the way I'm taking it.
This is my first post here - the only SE I notice from Herceptin is diarrhea. I have diarrhea for about 4 days afterward. And maybe some heartburn...
I go for #10 on Thursday. I should finish up in February.0 -
Hello all
I had dose #12 last Thursday and am having only minor SEs. Brittle nails, runny nose (but not all the time). My hair is growing but without the curls.
Marybe I actually asked the Onc nurse last Thursday about delays between infusions of H and she said 1 week was ok but more than that you have to have the "slow dose infusion" similar to the first infusion of H that you received. I'm hoping to take a holiday in the latter part of September, though I think that the travel arrangements will just have to be suited to treatment dates.
Herceptin is very expensive and whilst there are complaints about our NHS system I don't have to pay a penny. I dread to think what this all (from 1st diagnosis) would have cost had I been paying for it all myself. Though as I have said on here before my Onc had to fight for 5 months with the Health Trust to get permission to use Herceptin on me.
Marjie at this very point in time "big sis" from London On. is on the big silver seagull on her way to Belfast, via London England, for a couple of weeks.
Hope you all were safe from the huricane which swept up the east coast.
Take care all
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Hi Frank! Long time since we heard from you. In Philly, things were not as bad as expected. I was without power for about 18 hours, but no damage. I know there was some bad flooding that took a while to be resolved and people in those areas had to leave their homes. I am sure the damage they had when thy got back in was severe, but it was expected to be worse. I guess it can always be worse.
I got something from my ins. co. on the last Herceptin, I think an EOB or something like that. The cost of the Herceptin was over $18,000. I had to pay $1,000 as that is my max deductible for the year. That is a lot of money! Glad I won't be paying anything any more. I can pay the $1,000 off over a year in weekly payments without interest too, so don't feel badly for me. I am grateful I have pretty decent insurance.
Will be getting Herceptin #6 next Wed. (would be Monday except for the holiday). This will be the second one wihtout any chemo drugs, so will be interesting to see if the side effects will stop.
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