ER-, PR-, Her2+ Roll call
Comments
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The numbing cream is called EMLA. You smear it on the port about an hour before you. Then you have to cover it with Saran wrap or similar product and let it sink In. MY onc nurses said pile a dime size blob directly on the port. I then taped the saran wrap so it wouldn;t shift around with some of the paper tape.
Towards the end I started not to bother. I do wish my place used a spray-I have heard it numbs it immediately. I have to have my port accessed because the place i went for a scan poked it 4 times and never got anything out of it. I told them all 4 times it was in the wrong place because it still hurt after the initial stick. I am really hoping it isn't damaged. I had just had a tx the day before the scan and it was fine.
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Hi Suemed, yep I did it! not so bad as the anticipation until I got home and realised I had all that junk in me now, ugh. No nausea meds I must ask about that today, but so far I've been ok. I did ask about Claritin but she just looked at me and said she'd never heard of that!! However I think I will try it since you all say it's good. The nurses don't seem to offer any info, just do their job,
, but the onc dr is nice when he's around.The only SE I seem to have today is a headache, but I can get them anyway. I have super duper drugs for that, hope they'll mix ok! My regualr doc thinks they'll be fine.
Hope you all have a good day today.
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Hi ya girls, Im in too
Wow, all this time from Diog, Surgery, Chemo, Radio, Target and now on Neratinib trial I have been eagerly looking for us girls in the crowd of comrades, and there you are, Yay a big cyber circle hug to you all, Thank You Nevo84 for your insight to what we all where thinking ! Just finished one year of 3 wkly Herceptin and did Ok, and now strait onto a year double blind Clinical Drug Trial Neratinib, which I am only 5 days into and no side effects as yet, so looks like I may be on the placebo, time will tell ! never thought I would be wanting and waiting for side effects to happen, but there you have it, bring it on.
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SouthHamptonMom - Don't overdo it - drink LOTS of water as it helps flush the drugs through your system and minimizes SE's. Definintely listen to your body. l learned that lesson the hard way...now isn't the time to push yourself too hard, but moderate exercise is a good thing.
Grimbol - I use EMLA cream on my port. I put it on about an hour before they access it. There have been times that I didn't use it and it's defintely a sharp pic but not too bad - I don't know if there is a difference with the port in your arm. The chemo nurses also suggest icing it prior to access but that just makes it achy and ends up giving me a bit of a headache.
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Hello all
8 months past by last Herceptin.
Had my second, 4 month follow up with oncologist. So far so good.
He will see me again in 4 months. I had no complaints so no additional tests or scans. Just normal blood work which was all good.
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Hi CacakathFreeSpirit
I'm glad you found us. Big hugs to u and I hope you won't experience any side effect from your new drug and it will work for u.
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I just started Taxol/Herceptin last Thursday after finishing up DD AC x 4. I was feeling great until yesterday. I started feeling nauseous and tired, had the chills, and achy teeth. What else should I expect? I feel like I don't want to get out of bed.
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That was the "schedule" I was on too, Southampton. Chemo day - Neulasta shot day - in bed day. Then it got better. I got chemo on Tuesday and took the rest of the week off. I always felt fine to go back to work on Monday.
Grimbol - Hope you're feeling good by now. Definitely ask about the anti-nausea drugs. My onc gave me prescriptions even before I started chemo, and I had few problems.
I finished Herceptin in April 2009, and had a PET/CT before getting my port out. Sounds like every onc does this differently.
Wishing minor side effects to everybody currently in tx!
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Kaka - I also did the Neratinib trial and never experienced the 'big D." I think I got the placebo, but about 6 months in, I did start getting weird foot cramps. I remember telling my husband to look at the really freaky way my toes were cramped up. I never even connected it to Neratinib until I read about some others on the Neratinib trial thread experiencing the same thing. So who knows? Either way, you're making a contribution to the war on Her2+!
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thanks suemed, the nausea is better as long as I eat little and often. I have meds now too. The ahces and pains from ?? Taxol? Neulasta? or maybe both. Definitely getting me down, I went for a walk, but can't imagine being at work tomorrow. Anybody got any hints for dealing with this pain?
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Bump
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I think I have pain from both taxol and herceptin. I am no longer on neulasta, and I have aching bone pain. I think the taxol causes electrical-type pain. My finger nails are sore, and have noticed that my eyelashes are now falling out. I am worried about my WBCs. They have been dropping steadily since I started, and no more neulasta (neu-nasty). Geeze, I never thought I'd actually want to ask for that nasty stuff!
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Being further out now, yes, I would put my pains into two different catagories, so maybe the shooting nerve type pain was/is the Taxol. I have been doing much better the last few days, really not looking forward to the next time though, but at least I'll be a little better prepared. Everyone talks about their WBC, I have no idea of mine, I assume they checked them the first visit before any tx, but I've not had blood drawn since so I guess no-one knows what they are!! least of all me.
The thing that is still bothering me is the tingling in my fingers and feet. That isn't going away, probably just getting worse each day, to think that this will just get more and more with each treatment freaks me out a bit.
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Me too.
I've had a lot of heart palpitations since Friday, too. Hoping they go away....0 -
Me too also, the bone pain from Neulasta is indescribable, and I will never forget it along with the nerve pain from Taxol. I am exactly one years on from then, and happy to say they both stopped soon after treatment. I had 2weekly chemo and neulasta 24hr after x 8, then went on to Herceptin. Bone density scans after recovery is a good idea for Neulasta girls as with chemo effects on the Bones also. Im 45 and found out 6mths ago I have Osteoporosis of the lumbar spine, but I also have a slight genetic disposition to it on top I think, but I will never know which played the main roll in the loss. Also had heart palpitation that scared the living crap out of me !, they went also with close monitoring on my electrolytes and potassium levels.
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I think my aches and pains are getting a little less over the past month. I know I do get some from the herceptin but perhaps there is a residual effect from chemo too.
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Yes marjie thats the difficult part isn't it, trying to work out what pain is from what cause, and what that means ! Chemo takes so long to recover from on a cellular level, but I guess thats the point of its operations on the bad guys. Its a matter of managing it to a bearable level to continue living life with some recollection of what it once was !!! Someone said to me once that you have to account for an entire year of wipe off, set aside for grief, surgery, treatment and recovery, and of course not all of us can do this the solo way with dependants or financially. For me I can remember thinking at the time that I was glad I was single when diagnosed, but again everyone is so differant like some could not imagine going through it without a partners support, which is true also, we all are all unique individual women and deserve to live and be old and wise.
Catherine
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Very true Catherine! We are all so different. I was very thankful to have my DH and kids (23 & 16) around for support, but at the same time, when things weren't going so well, it was awful to see the stress on their faces....especially my DH, it was really hard on him but he acted like he was fine to be strong for me (ofcourse I could see right through it!).
I am one year out now, still will have Herceptin until January, but I am heading back to work in a few weeks. It will be nice to start feeling like "normal" life is starting to return a bit. You are right...be prepared to write off a full year! Today I am meeting with my surgeon and getting the results of my first mammogram since original diagnosis and treatment...fingers crossed!
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Hi Everyone, I too am receiving Taxol and Herceptin every three weeks, have just received my 2nd treamtnet and was blown away by the leg pain on day 3 with first treatment, it last severly till about day 8 then started to subside, sometimes at night would come back, I took tramcet which seemed to take the edge off so it was tolerable. I did experience tingling in fingers and feet, and alot of heel pain and some numbness, hoping this doesnt stay.
I was Rx decadron for several days after treatment but asked about not taking it as i find it very uncomfortable, cant sleep, face flushed, feel irritable, agitated, so am trying without it this time.
Thank you all for your info and iencouraging words and hope this is helpful to some.
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cmaxhoney - I had the extended doses of decadron as well to help alleviate some of the SE's from taxotere. The first time I had it, I was a maniac.....cooking, cleaning, painting my livingroom, talk, talk, talk....kind of the Terminator crossed wih Martha Stewart. I couldn't wait for my next dose of steroids, but alas, I never got that crazy high energy again (likely a good thing!!) and my poor DH had to finish all the projects I started and didn't get done LOL.
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Ha ha ha marjie, Oh my goodness, I just had a Comic visualisation of you doing all those things, sounds like a small house Renovation during that time 0
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Marjie - did you get good results from your mammo? I reacted to the Taxol at my 2nd tx yesterday so got a double dose of the steroids but I don't take anything afterwards. Only major pain meds to deal with the bone pain. I read on another thread that it might not be so bad by the 2nd and subsequent txs, I hope that is true. I'm also struggling with the nueropathy, the onc was concerned yesterday that it had come on so early with the first tx! so reassuring!
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Grimbol - my mammo was clear, which was nice! I was luck to have really minimal nueropathy, if any. I don't have any lingering effects of it either which I know is not the case for many women. The 10 days of steroids at each tx seemed to minimize the bone pain for me so it was nothing a tylenol couldn't handle. My SE's were accummulative but that also could have had something to do with the way I metabolized the drugs (which was not very well!).
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I get 6 rounds of fec-d and a year of herceptin, so far done 2 fec not to bad except on my hair, but I think neulasta causes my joint pain.
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Just checking in. I will be 2 years out on Oct. 5th. Had partial masectomy, another surgery to get clear margins, TCH and radiation. Had a port and got it out one week after my last Hercepton. Had surgery at UTMB (by a surgeon I work with and know well). Had TCH and Radiation at MD Anderson. Got very fat and have not lost any of the weight! Worked while getting treatments.
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Terry71 - You have the same regime as I had. Neulasta didn't work for me so I had to do the Neupogen injection - but you're right, both do cause bone and joint pain. I had my last "hard" chemo (FEC-D) on Feb 2 and have just had my 12th Herceptin...I should be done by the end of January. Hoping to be able to get deported right away.0
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Deported, wow, I thought they only did that to criminals, not people who used to much Health Care funds!!!! You can come to LA and stay with me!
Every day I look at my port and think about how long I will have it in, I guess you do get used to it eventually, please???
As you can tell I am feeling a little better tonight, havent puked for about 11 hours now, woo-hoo!!
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Grimbol - glad you are feeling better. I forget about my port most of the time anymore...all in all, I'm glad I have it.0
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I'm just 2 weeks into treatment. Had lumpectomy 9/1, and will have MammoSite RADS starting next week. Then TCH in October.
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I finished my Herceptin in Nov 2010. I no longer have the joint pain. My doctor always told me it was not from Herceptin but I am sure it was. It went away slowly. I would say it took about 6 months to be gone completely. I have no idea why they say this is not a side effect. My doctor kept saying it is not,yet so many on here seem to have it.
Good luck to everyone.
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