TRIPLE POSITIVE GROUP

MMay

Thanks again to you ladies. You have been so helpful and alleviated some of my fears. I did have a echo before starting the herceptin and will be getting them regulary. I now have a lot of questions for my mo when I go in Thursday. Bless your hearts. ((Hugs)

zjrosenthal

MMay, you will be fine. One day at a time. There will be good and bad days. Herceptin is definitely easier than chemo. Your MO's job is to get you through it. So please don't hesitate to contact them when you need to. Chemo is not fun, scary especially in the beginning but many of us here have already gotten through it and you will too. Remember, it is saving your life. Love, Jean

Gretagirl

MMay please don't beat yourself up we all fall apart. I cried so much Saturday I wore my self out. just couldn't stop. this is soooooo much and so overwhelming! I go today for Herceptin and I am nervous. my stomach is just starting to heal some and my mouth has less white spots but not totally healed yet. I hope there are little to no SE with Herceptin.

zjrosenthal

Science has found lots of stress chemicals in tears. I like to think of crying as taking an inside shower to clean out the anxiety. I always feel better after a good cry. Love, Jean

KateB79

MMay, I'm right here with you--starting TCH soon, maybe as soon as two weeks from now. I'm dreading the SEs, but here's how I look at it: it will be over in December, everyone says Herceptin by itself isn't so bad, and we can always do just one more treatment. Just one more. So, if we're on the first and it's horrible? We can still do the second one. Same with the third, fourth, fifth, and sixth. We just keep going, knowing that it's hard and it sucks but it's dramatically--DRAMATICALLY--increasing our chances for DFS. You know?

I'm seeing a second oncologist today, just because she comes recommended from a colleague who just finished her BC treatments LAST WEEK. This MO at a big teaching hospital, which comes with pros and cons. . . . Honestly, I just want to get the ball rolling. Pump the potions in, manage the SEs, and back to my regularly scheduled programming in the winter. . . . Anyway, for now I'm weighing the teaching hospital doc against the private practice doc. I guess I'll know more after the appointment this afternoon. So many choices I never thought I'd have to make!

Thanks, as always, ladies.

-kate

lago

MMay I was in the gym doing 70 minutes of elliptical and treadmill the day after my first chemo. The SE will come on gradually and get a little more intense with each treatment. You most likely will not feel that way the entire 3 weeks. I found keeping as active as I could helped. But then again everyone is different.

1st treatment was boring. Actually all the treatments were boring. Big time suck. Bring something to do and eat.

BTW it will take some time to recover from chemo but you will. I feel great and I'm happy. My biggest fear was if I would ever feel good again. Well I do!

husban1234

Hello-

I am a very concerned husband ( maybe the only husband in this group). My wife was diagnosed with triple positive stage 1 breast cancer July 1st and a week ago she went through with her first chemo treatment ( 6 session every 3 weeks of Herceptin, Perjeta, Taxtitin and Carboplatin). Her reaction to these drugs were unbelievable! This was killing her to the point that she almost fainted from stomach pains in my arms. She is extremely tough, however her adverse reaction was such that really concerns us as she simply cannot sustain this 5 more times as this alone would kill her ( I have no doubt). The plan was this chemo followed by either 1) Masectomy, 2) lumpectomy 3) no surgery ( if the tumor disappears).

Make a long story short...her reaction to the chemo was so severe that she cannot withstand these treatments...so this is simply not an option. She is thinking of getting off the chemo and going with " Monotherapy" which would be the Herceptin only ( as she is HER2 +) followed by the Tamoxifen ( as this is estregoen and proestrogen sensitive). Then followed by whatever surgery ( lumpectomy or mastectomy) that is necessary......any thoughts? Has anyone ever done this?

She went through 1 round, and based on her reaction I am sure this did some severe damage to any cancel cells.....so it was certainly not in vain.

websister

husban1234

Your wife needs to let her oncologist know how the chemo/Herceptin/perjeta affected her and they can discuss changing dosage or changing taxotere to taxol or whatever is needed to help out so she doesn't have the side effects she had with the first chemo cycl

KateB79

Welcome, husban1234!

I second websister's call on this. Side effects are manageable, and the oncologist can likely do a lot to stop that from happening again. Call ASAP!

I'm starting the same regimen (TCH+P) on August 13, so please tell your wife that she's not alone.

For those of you following my saga . . . I picked an oncologist. She's wonderful; my partner and I both like her a lot. Where the first oncologist poo-pooed the idea of Perjeta, this one mentioned it before I did. She said the word "cure," which I like to hear. ("There is a possibility that this will cure you.")

-kate

Suladog

Kate,

good on the perjeta, everyone I know who's got anything 2cm or over is getting it with their herceptin, I hear it works great!

Outdoorswoman

Hello ladies, I have a question you all might be able to help with. I finished my chemo (AC then TPH), had my mastectomy in April, now on herceptin until December and I'm taking a Lupton shot every 3 months. I will not start armidex until after my reconstruction on 8/12/15. What wondering is my joints hurt sometimes and my knees are killing me is it the herceptin or the fact I have very little estrogen in my body from the shot? Any suggestions on how to help this I'm working and always on the move so I don't want to take pain killer, Advil and Aleve just don't seem to cut it.

SpecialK

outdoors - hard to say, could be one or the other, or both. How quickly do you get your Herceptin only infusion? Some of us noticed bone/joint pain with a 30 minute Herceptin infusion which dissipated with a longer infusion. Did you have any bone pain during the taxane portion of your chemo

Suladog

Outdoors,

I get my herceptin over a 90 minute session. TTfan advised me to try it that way and I haven't had any painissues

ElaineTherese

Kate -- I'm glad to hear you've picked your oncologist! I like the fact that mine seems to be up on all the latest research, too.

husban1234 -- I agree with the others that you need to contact your wife's oncologist about how poorly she feels. The medical oncologist (MO) would like your wife to complete treatment, so MO should do everything possible to alleviate the nasty side effects so your wife stays with the program. By the way, some women really struggle with the regimen your wife is on. MO may have to switch to something gentler like Taxol.

Cowgirl13

When I had my first herceptin (alone--after chemo ended) they tried a 30 minute drip. Didn't feel quite right and the next time it was run for an hour. Looking back, I should have had the 90 minute drip as I think Special K did. Had I done this, I don't think I would have been as tired. So my take-away would be to have them run at least an hour drip the first time. Don't worry if the nurse looks at you funny...just be sure you get the 1 hr.

Outdoorswoman

I had issues with the Taxen and ended up cutting the last two back, but now that ight k about it I have had this since starting herceptin. So I'm going to try having a slower drip next week. Thank all for the help.

lago

husban1234 you are not the first husband to post here. You wife must tell her oncologist. They will either reduce her dose or choose a different chemo. One of my friends was allergic to Taxotere. She was given a different chemo. She's doing fine too.

TizzyLish

Posting this here too since ya'll are mostly dealing with the same regimen as I am ...

Question! I had my second round of TCHP yesterday. Last time I didn't start feeling queasy until Friday. I feel okay so far today but I'm wondering if you can take Zofran BEFORE you start feeling sick, to stave it off? I was only told to take it "at the first sign of nausea." Thoughts?Experiences?

Thanks!

T

Stephmoen

tizzylish I was told to take zofran before you feel sick by my chemo nurses I take zofran for the first 3 days around the clock to keep me from feeling sick works good..I had reactions to taxotere just an itchy throat Ithas to be run slower and I have several drugs added to my regimen to help me through I wiill finish up August 6 can't wait to be done

TizzyLish

Cool! Thank you.Sounds worth a try.

And hooray for you -- August 6 is just around the corner! You are at the finish line!

Stephmoen

thank you originally it was July 30 but due to my port becoming infected and me becoming septic a couple weeks ago they pushed it back it's been a real pain I now have a picc line and give myself infusions of antibiotics every 8 hrs for 4 weeks I feel like I have been through enough these last 3 months hopefully surgery goes smoothly!

MMay

TizzyLish my oncologist gave me a script for both Zofran and the phen gel. He told me to take my first Zofran as soon as I left my treatment and then alternate that with the gel every three hours. Zofran then three hours later phen gel then three hours later Zofran etc... I did this for 2 days then stopped the gel but kept the Zofran every 6 hours until day 5 then I decided to try and skip it. I have been ok. I was nauseous even with the meds and had such a hard time eating day 3 through 5 but I did not get sick.

Jerseygirl927

husband do have her talk to her MO a sap. I wanted to quit first day and almost did, mostly cause hubby was pushing me to go walk or get up and stop laying there. The dr told hubby to back off, she is being poisoned to kill the cancer, her body will fight it, push fluids so she can hydrate and do what dr says...it got a bit better each time but for about 4-8 of those days she will just not have the energy to function, it does come back slowly, so do as they tell you, hydrate her, and let her just rest... I finished my chemo in May and already past the bad stuff. Tell her to hang in.

momwriter

Hi TizzyLish and others-

I just wanted to mention that I took ginger capsules to help with nausea throughout chemo. I took them before my tx and after for about 3 days. It greatly helped with my nausea with the AC tx and I barely had to take zofran or any other anti nausea drug. (During AC treatment I did get IV emend while at infusion, but not during Taxol alone.) Of course how nauseous you feel depends on your unique constitution (just like in pregnancy) but I found and still find ginger to be extremely effective with nausea and it has no other side effects (for me, zofran etc were constipating which is mostly why I didn't like them).

Hugs to all and remember- it's a marathon, not a sprint. You will make it through! I did, my hair is normal again, and I feel great!

Kb0041

I just want to share my experience. I was initially diagnosed triple+ from the biopsy. I had a bilateral mastectomy. I then asked to have the oncotype test done to confirm what my chance of reoccurrence was. I know that they do not usually do the oncotype test if you are HER2+. That test came back that I was not HER2+. I had this check again with another lab to verify this information. It also can back HER2-. Please be aware of medical misdiagnosis. It happens! This has changed my entire treatment plan and I am now wondering if the surgery was excessive. Looking for a malpractice attorney now.

Tomboy

Please please please you guys! My friend who passed several years back, from st 4 lung cancer, had been on a clinical trial. it worked, the docs were amazed, she lived 10 more years. She never let me go with her, except for follow up, which she did not do for as ong as they wanted her to. They had to stop that clinical trial, because of its extreme toxicity. I asked to read her med papers, no, but she saved them for me. That clinical trial was an extreme amount of Carboplatin, and she suffered intensly from neuropathy for the rest of her life. please please please ice during T and C. No ice necessary for H!!!

SusanHG123

Am posting here because so many of you have followed my dealings with ex-husband from #$^%@%!# and his own version of bat-shit crazy. So, as aware, divorce is final but property settlement continues. And continues. And continues.

Today was One. Of. Those. Days. Rushed from a facility where I am contracting to do psych education to the university for a graduation ceremony. Still rushing opened my car door and my phone fell less than 12" to the ground. With a heavy duty shock-guard case. And shattered the face plate and the underneath of the phone. After the ceremony rush to A.T. & T to do something, anything. @*%^&^(@)@ is supposed to cover my cell because he wanted to keep me on some tax deal as "medical consultant". I agreed to that as long as I did not have to talk to him or see him. He can lie on his taxes all he wants (remember-he is a fake CPA). So into A.T.&T. Guess what. He took my name off the account. Thus, I cannot keep my long time cell number. The only way I could keep it is to contact him and have him call A.T.&T and give permission! Can you spell not in this lifetime or the next! What a crock. I did learn that unless I notify him I have opened a separate account he will continue to be billed and will have a payment due monthly. Hmmm. Lets vote shall we? While there the sales rep talked me into the promo-a baby iPad for a very reduced rate. I will park it next to my grown-up iPad and they can look like a single parent and a child. I was tired and hungry and frustrated. She probably could have sold me a snake by that time.

Ports. Being deported-love the term. I had my port removed after almost 20 months. It was getting sluggish and I never intended to need it again. Fast forward a year. Second port inserted due to the need for IV iron. I cannot have IVs in either arm-23 nodes removed in 1 pit and 8 or 18 removed in the other. Next option is my foot. As a nurse I knew I was not going to have IV iron weekly in my foot. I will keep my port forever. My oncologist, general surgeon, and chemo nurses have all said--do not remove. Had it flushed today. Have labs next week and the week after and one of my chemo nurses will use my port for lab draws.

The new folk with nausea. I took some magic tablet-which i have forgotten the name starting before chemo. High priced-like almost $500 for 4 tabs but my pharmacist found coupons for $50. I also used Zofran until I devleoped the rare and unusual Zofran "it is probably brain mets" headache. Then added compazine, some steroids. Always left with my port accessed so I could do fluids that night at home and at work the next couple days.

I am having insomnia. Thank you Femara.

Much love.

ElaineTherese

SusanHG, I'm awake enough to read (and appreciate) your post. Thanks, Aromasin. Best of luck, getting through the property settlement phase while retaining your sanity. Never giving up my port either.

TonLee

Sorry was here and then gone...I get so busy.

So the pain in my back was an 8mm Herniation of the L4-L5 disc, and pressed on the sciatic nerve (rt) side. The pain was worse than anything I've ever felt in my life.

So, I had spinal surgery 3 weeks ago. I can't work out like I'm used to doing, but can walk 5-7 miles every day. I was standing for 10 hours a day the day after surgery and since (sitting still is kinda sucky).

I will probably never do heavy weights again, but I'm good with that...I was doing really really well with body weight exercises ...

Does this have anything to do with BC? I dunno. But I feel SO MUCH better after surgery that I can't be anything but totally thankful I had it

Anonymous

Tonlee so glad to hear you are doing better. Do you ever look back and see just how much your post has made a difference to everyone?

Mmay- you will note that a few people mentioned the length of time Herceptin is given by itself. My first 2 infusions of herceptin alone were over 30 minutes. I finally told my ONC one day that I wasn't sure what was wrong but I felt worse on just herceptin than when I had taxol/herceptin mix. He changed to a 90 minute infusion and it made a world of difference. So just monitor how yo feel