Starting herceptin this Thursday June 7

[caya]

Hello gals,

I am having my loading dose of Herceptin this Thursday after completing my chemo of FEC-Taxotere - 3 rounds of FEC, 3 rounds of Taxotere.
I am both nervous and excited - It's still unreal for me that I went in for a breast reduction on Oct. 16, 2006, and came out with breast cancer.

Any words of wisdom and support would be greatly appreciated.

Thanks so much,
Caya

[LAURIE]

Bc is a whirlwind of an experience. I can only imagine your suprise after surgery. You can do it, you have already been through the worst of it. I don't think you will be suprised this time. Herceptin is very tolerable for a large portion of the popu;ation. I actually don't know a single person who has had a bad reaction. There are loads of people here who know a lot about herceptin, and some have been on it for awhile. I am on a weekly dose of herceptin and have always tolerated it very well. I do not take anything with herceptin except tylenol (I got off the benedryl within a couple of weeks) I am sure you will be fine. Everyone always say it is best to drink water before, during and after treatment. Your nurse should keep a eye on you to make sure you react well. I am sure you will do fine. I am not going to say have a good time but do something that occupies the time you get treatment. You should plan a night out (or in) to celebrate the wonderful drugs that sustain our lives. We need to be happy that we have the resources that can treat us. Just think you could be like me and have to go every week. YUCK!! I am trying to convince my ONC that every 3 weeks would be best for me. Let's hope!!! I am sick of the weekly visits (plus the cost) it is so hard to work around my work schedule. It makes we wonder about my ONC, because I would say that 90% of the people on this site get the 3 week dose. Good luck and celebrate, no more chemo!!!

[mke]

I have only 2 of my 18 herceptins to go. After the first one I felt a little headachey I think, but after that I didn't have any reactions. I do have a pretty drippy nose but that's about it for side effects. I don't do any benadryl or tylenol. It takes about a hour, I usually bring something to read.

[Patb]

I have been on Herceptin about 7 months with no problems, maybe a little weight gain, I take it every two weeks just for more free time and get a two
week dose over an hour. I like it that way. Good luck with your treatment, it
is easy.
patb

[Caroline UK]

Hi Caya, I'm on Herceptin #12 with 6 more to go, and have been fine on it, a complete breeze and doddle compared to chemo (similar to you, I had 4 FEC and 4 Taxotere). I would say I feel slightly as if I'm going to go down with a cold, but even that has gradually decreased, I think. I do have a drippy nose, and a crusty nose in the morning (oh the glamour), but that's it. I learned here that these symptoms arise because the Herceptin affects the formation of the cilia (fine hair-like cells) in the nasal passages.

I can relate to your sense of shock, as my diagnosis was also a surprise to me, although I had more of a lead-up to it than you. I had the tiniest sense of slight firmness on my right breast, and when I went to have a mammogram just to be on the safe side, and the results came back as cancer, my breast surgeon told me that in fact it was in a different area and the firmness was nothing to do with it. But how amazingly lucky was I, and I guess you too - when would we have found it otherwise??

What a good idea, Laurie, to have a night out to celebrate these wonderful treatments available to us and saving our lives. I don't tend to think that way, and it's really good for me to be reminded. Nice one!
Wishing you well on Thursday, Caya, and congratulations on finishing the chemo.
Caroline

[caya]

Thank you Laurie, mke, Patb, and Caroline UK for your advice and support. Laurie, I like the idea of celebrating - my onc. had told me that Herceptin is a true wonder drug that is literally changing the prognosis for us HER2+ women from a "poorer" one (a few years ago) to a "much better one."
I have every hope of beating this and getting through my one year of Herceptin.

Caroline - I had a mammogram and breast ultrasound about 4 months before my reduction surgery - showing nothing - lol. It truly is a miracle I had the reduction at that time, the docs say because of my big, dense breasts the BC may not have been found for another year or two and it would not have been stage one with clear nodes at that point - yikes!!!

Thanks again,
Caya

[DonnaD]

Caya
You'll do fine on Thursday. My nurse told me if you were to have a reaction it would be on the loading dose and they are very rare.

I had a very hard time with chemo, at the end of AC and the middle of taxol combined with Herceptin. I did not know if it was the taxol or Herceptin. But I have had 4 Herceptin alone and have no side effects. My treatments are every three weeks and it takes about 30 minutes. Very easy.

I am so thankful for Herceptin. We will be living proof it does make a difference with early stage breast cancer as well as metastatic disease.

I'll be thinking of you on Thursday. God Bless
Donna

[Believe51]

I will be thinking of you especially on the 7th. Things should go "o-Caya" for you. We will be saying specials prayers for you as we always do. My hubby has handled his Herceptin very well. He has trouble with numbness & flu-like symptoms. Go get 'em girl, and write if you need us!!Big hugs and prayers>Waiting For A Miracle>Believe51

[Andrea Barnett Budin]

I guess my story is in my signature and bio. Tk me 2 yrs on this site to figure out how to add these. Next is how to get my picture on board.

'95 dx - infiltr lobular carcinoma + 2 out of 18 nodes. '98 multiple mets ino liver. Her+ 80% ER/PR-. Been on my miraculous, life-saving Herceptin since '98. Wouldn't skip a treatment. Started ev wk, back in the day. '01 switched to the ev 3 wk plan. Get drug w/500cc's saline. Had a new pharmacist once who gave the standard 250 saline, but felt shaky, light-headed as leaving, a bit zonked. So they give me my 500 ccs. Slightly drippy nose. I can live with us.

Taxotere for 9 mnths got the job done, but wow! the side effects were huge for me. This is a breeze. I get it over a half hr. Loading was 2 hrs, then 1 1/2 hrs., then 1 hr. Now l/2 hr. With a port. Piece of cake.

Note in signature -- Herceptin was FDA fast-tracked at end of Sept '98. I was dx w/mets in Aug '98. How lucky I feel. There to save my life. I believe it keeps the mets at bay. Stable, NED since '99. Would never go off -- as long as my body and heart can take it (ECHO ev 6 mnths -- EF good), as long as I can psychologically stick w/the plan (I say Yeah! Thank you God for this life-saver, and, thank you Dr. Slamon -- who I've met and hugged and personally thanked for saving my life), as long as insur co doesn't balk (not once -- again LUCKY)... THAT'S THE ADVICE I GOT FROM SLAMON, FROM PEGRAM, HIS PARTNER IN DEVELOPING HERCEPTIN AFTER SLAMON ISOLATED THE HER 2 gene and found it to be the cause of 20% of bc. Also I have 3 other oncs who say -- don't go looking for trouble. Stay w/it. That's my view. Like insulin for a diabetic. Like meds for a person w/high bld pressure. It's a savior.

Praying for continued good results for you and all the fabulous warriors on this board. I love them all. Soul Sisters to be sure. ANDI

[Believe51]

Thinking of you today as always, it is our treatment day too and that makes me feel even closer to you!!! Love & Prayers.>>Waiting For A miracle>>Believe51.....(Marie Caya G)

Husband dx @50yrs 9-06 w/Stage IV Inflammatory HER2+Breast Cancer and something has just stopped working 5-07

[caya]

I just had my loading dose of Herceptin this morning - as you all predicted, it was totally uneventful. No premeds, no tylenol - the infusion was the usual 90 minutes, then they watched me for an hour and nothing happened!!
Thanks also to Donna, Andrea and Marie Caya for also responding, and thinking of me today.

I do look upon this drug as the miracle that will keep the beast at bay -

Thanks again,
Caya

[Mary Jo]

Hi Caya,

I'm happy for you that your loading dose of heceptin was uneventful. I had an uneventful loading dose as well and my every 3 week, one full year of herceptin proved to be uneventful as well. I exercised throughout and had a very strong heart. Not sure if the exercise helps or not but I figured it surely couldn't hurt.

God's Peace surround you Caya,

Mary Jo

[Andrea Barnett Budin]

Caya, so proud of you! It's no biggie, right? You can do this. This is the "easy" chemo, or as Steph calls it Vitamin H. I love that! I love thinking of it that way. It's not chemo -- it's a monoclonal antibody, that targets a specific defective gene and corrects it from overexpressing itself and becoming ca.

It's your lifeline. I hold on tight and take the ride with my head high, as it pulls me through rough waters, to safety. Remember -- cancer is not the enemy, FEAR is your worst foe. Remain full of loving, healing energy and you will find you will not drown. You have so much to live for and to be grateful for. You are truly blessed. It could always be worse, I always tell my husband -- I AM LUCKY.

Did you notice how radiant Life is? Each day is a wonderful gift!

Sending you loving, healing energy... ANDI (BB)

[caya]

Thanks Mary Jo and Andi for your support - I love the Vitamin H - that is what it feels like - it's true, we are lucky to have this drug.

And Mary Jo - I fully intend to get back into exercising, as soon as get a little stronger from the chemo - I had FEC - Taxotere - those 3 Taxoteres nearly did me in. I was a regular gym girl - 4 -5 x per week before the BC dx - so I am hoping to swim and walk this summer to get back into shape.

My MUGA score was 64, I think this is pretty good. I will have another one in 3 months.

Starting Tamoxifen in 4 weeks.

Thanks again
Caya (Caryn)

[Bev]

Hi Cary,

There's a huge thread," Herceptin, Real and perceived side effects", you should search for.

I think there are more old threads as to whether mammos caught tumors. Moi, not.

If you did OK on loading. it's going to be a cakewalk except for pesky things like diarrhea or nose crust.

I would think they could gradually accelerate you to a 30 min infusion every 3 weeks if nothing continues to happen.

64 is a fine MUGA if it holds up, mine went up on H, you're good. Start taking CoQ-10 for insurance.

Congrats on being done with the hard parts of treatment. I read yesterday, the positive effects of Herceptin for 1 year continue for 4 years. So pat yourself on the back, things are going well. Bev

[Believe51]

Go get 'em girl, stay well!!..>Waiting For A Miracle>Believe51

[suzan w]

Glad to see that your first dose went well...you will do just fine!!!

[Andrea Barnett Budin]

Drink 10 glasses of water a day, to flush out all toxins, to hydrate and keep yur skin supple. Filtered and/or bottled water. Think of it as a prescription for wellness.

Co Enz Q10 -- I take 150 AM and 150 PM. More and more studies showing benefits. Argenine keeps heart strong and EF up.

If Imodium doesn't work, Wobenzm N -- 2 AM + 2 PM -- changed my life. Then came Effexor -- to help my hot flashes, which it failed to do, but keeps me cheery AND fixed my IBS (wc began w/Taxotere and remained for all these yrs, until...)

Slightly drippy nose. No aches or pains. Fatigue. Have supplements I take for that. Use vaseline in nostrils at night. Dry eye (since Taxotere) now under control w/Refresh + (has NO preservatives). Indiv little vials, one in AM, one at PM, sometimes one when I get up to pee middle of the night. Keep vials in pocketbk, on nightstand, near toilet and sink. Instant relief.

Have redness on upper arms and just under collarbone. Who knows what from? Oncs keep telling me we're in uncharted waters. Who's been on Herceptin since '98? No bk on longterm side effect, but heart strong, EF gd. ECHOs ev 6 mnths to be sure.

You sound like you're on the right path. Sending loving, happy, healthy energy your way... ANDI

[Belinda]

Hi Caya! Congratulations on getting through chemo!!!!!


I had 4 3-weekly ecs, then yesterday had my 4th of 12 weekly taxol and herceptin treatments. The first two were long (because they go so slow) and arduous - the pre-meds with the taxol wiped me out. But the next day on both occasions I was just fine.

And, I am feeling so alive and healthy compared to on EC, my quality of life has returned, I am positive and focussed, and have returned to work.

Any of the side effects I am having (there are few - slight peeling on feet, achiness about day 3 but not severe at all, funny bowels) seem to be from taxol and pre-meds. So I can confidently say that herceptin seems more than doable - it is for me a walk in the park.

I have read others posting about se's and it seems that some of that might be because the solution the herceptin is mixed with - in my case all along it has been mixed with a weak glucose and sterile water solution, basically on the morning of my infusion. That might be helping.

I just read down and realise you'd posted to confirm you'd had an uneventful loading dose - good one!!!

Happy going, Caya!

Belindaxxx

[Andrea Barnett Budin]

HI ALL! I've posted this before but it can't hurt to repeat it. As someone who's been a poster child for Herceptin (been on it since '98 and holding...) -- I was always on Herceptin w/500 cc's saline. I drink lots of water ev single day. 10 glasses+. Flush toxins. Hydrate. Good for skin that is dry, nourishing. Once a new pharmacist gave me 250 cc's. I looked at the bag as they went to hang it on my pole and questioned its' different size. They checked. 250 cc's is the standard recommended protocol. That day, after Vitamin H I felt immediately very light-headed, shaky, weird, super fatigued. So since then I demand, and they accomodate my habit, 500 cc's. Swear it helps!

WHAT IS FEC???????

Hope every one does well, gets their butt into stable territory and stays there. Hope I can keep on keeping on. Much love... ANDI

[harrie]

I took in 6 rounds of TCH which I finished May 11th. Now I am on the 3 week schedule of heceptin. Being on herceptin is a BREEZE compared to the chemo. Whew!!! I will be on it until January 2008. I feel pretty good and excercise daily. I also started CoQ-10 as of today. I don't notice any noticeably side effects from the herceptin. I think the side effects I do have are residual from the chemo.

harrie

[caya]

Hi Andrea,

FEC is a commonly used chemo cocktail in Canada and other commonwealth countries - UK, Australia, New Zealand -
F - Flurouracil
E - Epirubicin (same family as Adriamycin, less toxic on the heart)
C - Cyclophosphamide

My onc. is one of the tops in Canada, involved in many clinical trials, publishes many research papers etc. - says he has used FEC for about 15 years - says it is the most aggressive chemo out there. Combined with the Taxotere, Herceptin, and Tamoxifen, he has given me a "well over 90% cure rate" as a prognosis.

Thanks for everyone for your suggestions. I am definitely going to ask my onc. about taking CoQ10, and what amount. He's not crazy about supplements, but that was during chemo. He may be more lenient now that I am on Herceptin.

caya