Starting Chemo in JAN 2007
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Hi,
I am new to this site, have been on the HER2 support group site. I am 48, diagnosed in Oct. 2006 while having a breast reduction surgery (after having a mammogram and breast ultrasound in June 200, showing nothing - LOL), my plastic surgeon saw the tumour and took it out separately -to make a long story short - had MRM on Dec. 18, 2006, pathology - 1.7 and 1.0 cm. tumors, ER+/Pr+HER2+,stage 1, grade 2 - I'm on FEC-T, to be followed by Herceptin for a year and possibly Tamoxifen. My question - I had my 2nd chemo on Feb. 15th - have had neuropathy - tingling, numbness, "jolts", chill/burning sensations all over - at different times of day, can sleep okay - called my onc. nurse and she told me it was nothing to worry about, would discuss it with my onc, if need be would call back. Did not hear from her, but I will mention it next week when I go for chemo treatment. Anyone else had this side effect while on FEC? (not yet on Taxotere, which I have read can cause these symptoms? Please advise.
Thanks
Caya in Canada -
Caya, welcome to this thread. I'm also ER+ and HER+, and I've had those exact same symptoms while on adriamycin and cytoxin. Sometimes just my feet but sometimes fingers also so it's hard to type. And the alternature chills and burning. I had a hot purple rash on my face while in the chemo room this week, then chills, but no fever. They didn't seem alarmed at all, and I do think these are expected side effects but they always want to know what effects I'm having so I'd tell 'em anyway. Do keep us all posted! - Skye
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Hello Caya:
I'm on FEC too...there are a few of us on this chemo regime. I have been getting a bit of tingling and numbness in my limbs, but I don't geet the chill/burning sensations.
I'm not too good on sleeping, but occasionally I take Ativan and that helps.
Welcome Mrs. Shey.
MizSissy: Give that nurse a copy of "One Flew over the Cuckoos' Nest", and a package of Juicy Fruit gum, and tell her that she reminds you of someone in the movie and it's not the guy chewing gum....ha..see if she figures it out.
I think Lynn, Rebecca, Ilene and Carol had chemo this week. Next week it's me and Dar. I go tomorrow for my appt with my onc and review my MRI.
Robertin, my girlfriend is going to knit me a knitty titty...thanks for the link of the website.
Jan, I spent a lot of time in Halifax. I also taught at St. Francis Xavier University in Antigonish (Computer Sciences...specifically SAP). I love Nova Scotia. I may be asking you lots of questions to pepper at your Mom when I get closer to my rads treatment. Thanks, it's nice to know we have someone with the inside scoop.
Amera...glad to hear you made it to the gym. What exactly is it that people do at those places???
Skye...I have a cold sore that I'm having a real nightmare time trying to get rid of.
Shorti...love your dogs, I'd put a pic of my boy "Thor" and my girl "RC" (rotten cat), but can't figure out how to do it.
Hope everyone has a great weekend. Glad to see you back Rita Jean...you've had a very tough week. Take care of yourself.
Love to all...Big Bear Hugs....Joni -
Caya, welcome to our thread. We've got a really nice group of women here and I'll think you'll find that out soon. How lucky you were to get dx'd when you did. Sounds like your tumor was very early stage and you'll be in good shape. I am taking taxotere and I don't get jolts, but it's probably just temporary.
Joni, the saga of the nurse continues. I went to see my PCP and the good news is that my infection looks like it's finally clearing up. She wants me to get my infusion on Monday, but there's been no call from the new oncologist, and I am not afraid of the infusion, but I just cannot deal with this nurse any longer. So I am just going to refuse treatment until they give me a new one...she's giving me nightmares!!!
One thing people do in gyms is run on treadmills, which can be kind of tricky, especially if you're talking to much. I lost my footing last time and within about an 1/8 of a second found myself upsidedown between two machines. I landed on my jaw, and now I look like a victim of domestic violence. I'm taking my running outside--as soon as all this disgusting ice melts!!!
Mizsissy -
Hello everyone. Mizsissy you've been busy "smile" glad to hear your doing well.
Ritajean, new to site sorry to hear about your mother you are in my prayers.
I've noticed that everyone's trying to figure out this thread thing, me I don't have a problem I just click on the link that I saved to my favorites and click on the last page, if I missed something I just go back and read where I left off last time. No biggy to me. But it will get much bigger and if I had to use my desktop that is sometimes so slow it probably would drive me crazy waiting for the pages to change. Thanks to my sweet husband who went out before my surgery and brought me a laptop I'm not having that problem.
Has anyone experience missing their woman cycle after surgery? Is it normal?
Mrs Shey -
Hi everyone, we're back.
Welcome Mrs Shay and Caya.
I'm Terry and I am here for Tae, my wife, who is on day 7 of her 3rd session of Cytoxin and Adriamycin. I do the computer stuff for her.
Tae also has the burning in her fingers. And there is now a skin pigmentation problem. She called the onc nurse today that her hands and face are much darker, especially the creases in her finger joints. And there are a couple of dark spots on two of her fingers. Some of the nail beds are very dark, but that we knew about and were not surprised by it. The nurse consulted with Onc and called back later saying nothing to worry about. It is an SE that will "go away" after Chemo. Tae has been using Zyrtec to counter some of the bone pain from the Neulasta shot, and that has worked. The onc said to continue the Zyrtec don't stop after 5 days as originally instructed. The Zyrtec is an anithistamine that will keep the burning and itching to a minimum. Okay.
We have been absent for awhile cause the first week of these sessions are just draining both of us. So strange that the same chemo can behave a little differently each session. This one is the first time Tae actually gagged and almost barfed in the kitchen on day 4. She has the same nausea meds and we stay on top of the schedule. It's just weird. No wild temps this time, just some low grade fever that Advil took care of.
Skye, that rash in the chemo room is kind of scary. Tae had a different nurse this time and she pushed the ativan instead of the drip. That caused a headache. Then the Cytoxin was too fast and that brought on the sneezing and congestion, so we had her slow down the drip. It would help if we could get the same nurse each time so we all know what to expect of each other. One more AC session then the Taxol, but from what I have read here, I think we will discuss the true need of it with the Onc next Friday.
Take care everyone. Bless you all.
Terry 4 Tae. -
Hi As I understand it the On. DX test is for estrogen + bc so I was not eligible for the test. my oncol did-at my request- run the number at adjuvent online. I am guessing she ran it for ACT so I will ask her to run it mon for AC only.
Thanks for your thoughts. -
Amera,
Quote:
Carol, I am node negative as well. My onc is just doing A/C as the computer program she entered my info into said there was less than a 1% benefit for me to use the Taxol.
That is exactly what happened with me. They would not do the OnoType Test. He just used the online site to figure out the % rate and there was only a 3% difference if I did the AC AND the Taxol. So I decided just to do the 4 rounds of AC only.
I REALLY still want the OnoType Test. He mentioned that it was more for the HER2 postive women.... -
I hope I am doing this correctly, and that you will all see this post - thank so much to Mizsissy, skydivine, jonimb and t4t for responding to my question about neuropathy and for welcoming me to this site. I feel better knowing I'm not the only one out there experiencing these sensations.
Thanks again to you all, you seem like a great group - too bad we had to meet for this reason, but the contact and support is great.
Caya -
Good Morning Ladies,
Welcome Caya and MrsShey!
I've really been contemplating whether to have dh shave my head or not. My head never went totally bald and I had some thin white hairs on my head. Well I made the decision yesterday to have him shave it because when it starts to grow back, I want to have all new hair and be able to tell when it happened. I guess it would mean real closure from the chemo. So he shaved it last night, wasn't bad at all. I'm glad I did it.
Off to TC #3 this morning, will check in later in my fog.
Have a good day ladies, hope everyone who had chemo this week is doing ok.
hugs!
Lynn -
I'm off for my first Taxotere treatment this morning. I know I'm anxious about the change. Even with a Xanax last night before bed, I only slept about 4 1/2 hours. So I'll go soak in the tub, eat a light breakfast and wait for my daughter to pick me up around 8:30.
But this is number 5 - I'm half way through. Yea.
Spring is coming! I'm pretty sure, despite the blizzard that blew through yesterday and left 10 inches in my yard. But it can't last. The temps are to be in the 40s by Sunday so things should clear up fairly quickly.
Spring. Doesn't it sound lovely? -
Good morning all....
I have been following along, but have not had the strength or focus to be able to write much.
Good to see you Terry...glad that Tae seems to be doing well. She looks lovely in her avatar!
RobbinJaye, the oncotype text is for node negative, ER+ women with early stage disease. IF that is you...then you should try for the test! I wish I qualified for it, but I do not
I did, however get the news about my BRCA status when I went for my treatment on Wed...and.....(drum roll please) I AM NEGATIVE!!!!!!! If I didnt feel like I was hit by a truck I would be dancing. As it was, I was ready to pin my printout to my fridge
Feel good today IowaCindy and Lynn...each treatment brings us that much closer to the end of this chapter.
I think that is it for now...I am going to go back to the couch. It is funny how each tx is so different....... -
Hi gals, and welcome to the newbies. I am done with #3, yippee! It went well. I told her the Compazene did no good last time so she put me on Emend instead. Miracle drug, I tell ya! No, nausea at all--not even slight. I wish I'd asked sooner. I only take it for two days post chemo along with the Zofran and Decadron. Right now I'm just tired but none of that awful rollercoaster stomach I usually get.
About the menopause: She said that since I'm 41 I'm really in the grey area. She said it's possible to go through temporary menopause during chemo--hot flashes and all--and then go back to a regual cycle a month out. No telling what will happen.
AND, she's agreed to write a sick leave letter for me that will go through rads. I am so relieved that I will be able to use the sick days I have built up. This will leave me without a paycheck for only about a week to 10 days and I can plan ahead and live with that. Such a relief. I cannot imagine showing up to school to give finals. That makes no sense. Here I am to give a final for material that was covered when I was out. No thanks.
I will get a "normal" summer to recoup mentally and physically before heading back into the storm. I am so thankful and relieved.
Okay, back to bed for a day or two. The onc did say the exhaustion was cumulative and I believe her. Have a good day all.
Amera -
Good news Amera - common sense prevails! Right now it's hard to see post-bc life, but it will come. We just don't want to be pushed into it with this deadening fatigue. After tx #3, I am finding my energy has not come back as well.
Spring is coming - we're to see +10C for the weekend - I think that's in the 50s. It will be a slushy mess as we still have plenty of snow, but we'll take it.
I'm sewing pjs for my grandaughter. I haven't sewed anything in 10 years and didn't think I'd remember how, but it's coming back.
There's been lots of colds and flu around here, and I'm getting anxious. Do I stay in a go nuts? So far, I just avoid crowds and wash my hands a lot.
Hope everyone has a good day. -
Great on the BRCA news Rebecca. I am negative as well. I had it done on the day I was diagnosed and just nodded my head yes to all the testing they suggested. I'm glad I didn't realize what they were doing as it would've been one more thing to stress about.
Okay, really off to bed this time. I can hardly keep my eyes open.
Amera -
We're making progress so I thought I'd repost this with *'s next to folks that are getting close to the end!!!
Aladora, Victoria,7-May
Amera, Mass, AC, 22-Mar*
Carolin, Indiana, AC/Taxotere, 22-May
Dar1, Alberta, AC, 7-Mar*
I82jem(Jan), NC, FEC, 11-May
Ihopeg (Ilene), Penn, TAC, 9-May
IowaCindy, AC/Taxotere, 18-Apr
JoniIMB, Alberta, FEC, 20-Apr
Jungiee
Kids123
Lucy, TCH/Herceptin, Dec
Lynn12, Mass, TC, 4-May
Melianne, Cal, AC/Taxol,30-Jun
Mer1957, Mich, Taxol, 5-Apr
Mizsissy, Mich,TC, 5-Mar* Whoppee!!!
Nandy, Missouri, 2-Apr*
Ritajean, Illinois, CMF, 30-Mar*
Robertin, Kansas, 8-May
RobbinJaye, California, AC, 29-Mar*
Rsheehey (Rebecca), NJ, TAC, 2-May
Sandra7inCA
Shorti, Ontario, FEC/Taxotere, 23-Apr
Sirgin, Mass
Skydivine, Midwest, AC/Herception, 23-Apr
t4t(Tae), Alabama, AC/Taxotere 4-May
Viddie, Mass, AC/Herception, 19-April
Vlfr
A big *congratulations* to Rebecca on BRCA negative!!!! Dar 1 looks like you be finishing this week along with me...Hooray!
Skye..that purple rash during infusion sounds super scary...
IowaCindy, congratulations on the halfway mark. Taxotere is gentle compared to what you've had, I think you'll find it's not hard.
Jan, Carolin, Tae, Cara...I need your data to add to this list. Tae you must be very close to done, when is your last infusion date???...nice to see you back!!
Aladora, what flavor chemo are you doing? Any result on your BRCA yet?
Mizsissy -
Hey everyone, Tae & Terry nice to hear from you again. You're welcome Caya about the neuropathy. I haven't heard it discussed much. A friend who had chemo 10 years ago still can't feel two of her toes so it does sometimes linger I guess. I'm on day 5 of AC/cytoxin #4 and finally starting to feel like I'm detoxing a bit. Rebecca, I hear you on the sofa thing. I've been on mine a lot. The Emends work well but I still need to take the other nausea meds, I finally just decided as they make me drowsy I'll take a nap, then get back to work as I can. And Tae and Mizsissy, the purple rash did scare me some too. I love purple but not on my face. It did go away and has not come back, and I'll start new drugs, the taxol and herceptin, next time so hopefully the effect is different.
On TAXOL: I'm thinking now that I did ask my onc if the taxol was really necessary with the herceptin, and he said there is a study going on right now but it won't be resolved for years so the taxol is still the recommended course. He said he would be considered in poor esteem among his peers if he started leaving the taxol out prematurely. He is part of a major group of oncologists. Also, he did tell me that with the HER, because it is so aggressive, if the cancer recurs it comes back metastasized, so he is wanting to be sure we take every opportunity to wipe out errant cells. I guess that makes sense though it isn't what I wish to hear.
On a lighter note: everyone with the cold sores, mine did eventually FINALLY go away so hang in there! - Skye -
Mizsissy, Tae's last scheduled infusion date is May 4th.
Skye, thankx for relaying that info re: the Taxol. We're still going to talk about it next Friday at Tae's last AC tx. She was Her2Neu negative. She had 1 node positive of the 13 removed.
Viddie, you posted a while back about the Neulasta pain. Did your md ever mention Zyrtec? Tae got Zyrtec on tx 2 and 3. Almost no bone pain since. Strange since it is an antihistamine???
Beautiful day in Northern Alabama. We are going for a walk.
later, Terry 4 Tae. -
caya : welcome ! I have had the same symptoms the jolts and sensations all over my body and was attributing it to the SE . I have just finished my last FEC at the cancer clinic in Newmarket and have my first taxotere treatment on March 12th (march break week ) my 2 teenage daughters are going to have a quiet holiday this year . I am hearing and reading that the TX is not as bad as the FEC but does carry the numbness SE and water retention .
FEC - T seems to be a regime of choice here in Canada / Ontario .
Iowacindy : hope your tax goes ok today let me know how it goes . Great storm just left here hope all are ok with all those tornadoes down there ......
T4T hope tae is doin alright you girls take it easy today
Rebecca too .
I am on my good week so I am hoping to get out in my truck for a nice drive this weekend . The sun is supposed to be out , but again back to cold temps for us next week . uck ......
as for the BRCA test i have to wait and go for special genetic councelling at our big cancer center to get and answer on that ... funny healthcare system we have here sometimes ??? -
Good morning ladies - what a nice bunch you are-
MizSissy - If I go on schedule, my last chemo date will be May 10th - then Herceptin for a year after that.
Shorti - where do you live? I'm in Thornhill, but I go downtown to Mt. Sinai for my chemo, that's where my onc. is - had my matectomy at Princess Margaret Hospital (PMH).
Yes, FEC-T is common treatment here in Canada. Many of the ladies I see at the hospital are on it, many of us are HER2+. I'm so relieved you had the same neuropathy symptoms as me while on the exact same chemo - not happy that you are suffering of course, but at least I know I'm not going totally crazy!!
skyedivine - again thanks for your input.
Just to tell you all a bit about myself - I'm 48, married 24 years to a great guy, have two lovely daughters - one will be 21 in 3 weeks, the other will be 18 in April. They have been remarkable through all this - on top of this, my husband had a brain aneurysm in Jan. 2006 - was misdiagnosed for 3 weeks until we got him into a private clinic and a brilliant neuroradiolgist kept testing him and found it - we were very very lucky - the aneurysm had been bleeding slightly, not the big burst, so he was rushed to a hospital that specializes in neurosurgery and he had a coiling procedure - they stuffed tiny platinum coils into the brain via the groin. He recuperted well, was back at work by June - but the stress on my faimly was horrendous as I am sure you could imagine.
So here we are just 9 months after that, and then I get diagnosed with BC in Ocoter 2006 - had a breast reduction,cancer found by my plastic surgeon. So more stress for my family, but we will get through it - and I feel better with all you gals out there.
I will definitely keep in touch with this group.
Be well,
Caya -
Quote:
Aladora, what flavor chemo are you doing? Any result on your BRCA yet?
Mizsissy
I've only got a second right now but I wanted to answer this.
My flavour du jour is FEC and no results on the BRCA testing yet but I didn't expect any since it takes 3-6 months for results. I went for the testing about a month and a half ago.
Recebba, HUGE congrats on the BRCA negative, that's got to feel GREAT!
Lots of support to everyone today, I've got a ton to do so might not make it back here until tomorrow.
hugs to all,
Susan -
You know what Skye, I do remember my onc saying that if I needed Herceptin that I would also have the Taxol. There was a big discussion about my needing Herceptin as there were conflicting pathology reports, but the oncologists there agreed that I did not. I had forgotten about the Taxol going with it.
Amera -
I threw myself into a complete panic this afternoon after reading a post on this site about research on the link between breast cancer and a virus carried by mice. Why? My daughter has pet mice and before I was dx one of them died from a tumor. So I go into panic mode reading tons of research articles. Called my husband at work and told him that somehow those mice have to go and he's going to have to figure out how to break that news to our 6 year old. Then, I finally calmed down and realized that my first mammogram that showed a problem was BEFORE we had the mice. So I went from thinking that somehow I'd caused my own cancer and put my kids at risk to settling down a bit. But still, those furry little critters are out of here soon.
It's not like me to freak out so much about stuff like this. From now on I am not reading any more research!
Oh - and that mouse died MONTHS ago and my daughter still occasionally cries about it. I don't know how the heck we are going to get rid of the two we have without a major breakdown on her end. She's very attached. I am glad that I don't ever let her handle them.
One last thing - no scary replies allowed - calm me down, but please don't reinforce any of my fears. I just can't take it today -
I think I mentioned here what the nutritionist at Dana Farber told me to take daily. I checked with my oncolgist and she nixed the Omega 3's until chemo was over. She also did not think 1,000 mg of calcium and Vitamin D was necessary--but did sy it probably wasn't harmful.
I am glad I asked. I'd only taken all those supplements for a few days and frankly, I am so sick of taking pills right now I was relieved to give some of them up. She said she didn't know that the Omega 3's were harmful, and that they probably weren't, she just didn't feel comfortable saying yes until she knew more about it.
I assumed the nutritionist had run this by my oncologist but no, not specifically. Just thought I'd let you know.
Amera -
Jan, I totally know what you mean about freaking yourself out with research. I had to actually ban myself from reading research/science sites for a while because I was going into panic mode and information overload. What I have finally decided is that if you look closely enough at ANYTHING it will eventually turn out to be bad for you in one way or another, so the best thing we can do is to follow our common sense...and even if it turns out that we did do something to ourselves to bring on BC, the truth is that we did not KNOW, so how can we be to blame?
As far as rodents for pets....eeeeeeeeeeeew I agree, they should go, but not because they are dangerous...just yucky -
Jan I no longer read any research unless the headline is positive. Every time I read something contradicting my treatment, I get in a panic. I do not need this now. I also never look at longevity or recurrence stats. Those completely throw me. Also not what I need right now.
I think BC is such a big deal these days (or is it just that we are more aware of it?) that it gets a lot of sensational headlines and press. I say next October, during BC Awareness Month, we meet somewhere tropical where they've never heard of pink ribbons. Is it a date?
Amera -
Amera, Lynn, IowaCindy...anybody else this week? Don't forget: PAMPER PAMPER PAMPER. Stock up on your favorite bubble bath and drinks. Lie around, watch movies, sleep, take pills as needed. Don't do any housework. For that matter any work. Days 3 and 4 especially. The more you rest the more you heal!!!!
I'll join you for my 4th and (drumroll please) *LAST INFUSION* on Monday. And Guess What!!! I have finally been assigned a New Nurse. She's actually my oncologist's wife!!! Infection looks like its clearing.
Mizsissy -
Well that is some good news Mizsissy! Glad to hear it. At least now if your nurse messes up, you know who to complain to! I think nurse ratchet should have to wear a warning label, don't you?
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Mizsissy I am so glad you got rid of that nurse!
Amera & Rebecca - thanks, I am starting to calm down a little bit.
Amera - I think we should all go meet in an undisclosed tropical location for the entire month of October.
BMW is doing a "drive for the cure" event where they donate a $1 for every test drive mile to Komen. I signed up the the survivor drive so I get to be in one of 18 BMWs decorated with a HUGE pink ribbon with a police escort in the kick-off event. I was thinking about my love for sports cars when I signed up and didn't really think about all those people and my bald head, but I guess it will be fun. -
Carol 4 AC finished 3/1 taxotere 5/22
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