I have another question

nitewind · 08-19-2006, 04:13 PM

I'm back again with another question. Is it possible to get just herceptin treatments without chemo? I'm still going back and forth on making a decision about chemol. I thought I decided but then today I'm just listening to my gut feeling. I'm supposed to start chemo on the 29th. Scared to death and can't stop my mind from spinning. thanks for all the help.

ER/PR-
HER++++
No nodes involved
thanks again
Susan

chrisy · 08-19-2006, 04:55 PM

Dear Susan,
Perfectly natural to have your head spinning and to be scared. But remember, you want to give yourself the best chance possible to beat this for good and NEVER have to deal with it again in the future. You said your doctor recommended the chemo - how do you feel about this doctor? Do you trust him/her?
Her2+++ is a sneaky cancer and with chemo plus Herceptin, you have a better chance to knock it out for good. It's up to you how aggressively you want to fight this disease.
Don't be afraid of the chemo - I think you had many responses to your earlier post that chemo is "doable", and it will be for you, too, if this is your decision.
One other thought - you can always stop it at any time. Maybe try it for on he 29th, see how you feel. You can always stop.

RobinP · 08-19-2006, 05:25 PM

Unfortunately, there no studies on Herceptin alone as adjuvant therapy in early stage disease. However, there are studies done on the mets population that indicates that chemo plus Herceptin is more effective than chemotherapy alone. So for right now that standard of care for her2 positive bc is Herceptin and chemo, anything less would be sub standard care. Personally, I would have a hard time doing a sub standard treatment for an aggressive bc like her2 positive that was hormonal negative. Not to alarm you but, breast cancer that is er,pr negative is usually very aggressive, growing faster and spreading readily. You might look at breastcancer.org and look up hormonal negative in the search in order to see just how effective chemotherapy is in particularly hormonal negative bc.

Rendi69CA · 08-19-2006, 05:33 PM

Susan, I am getting hercpetin without chemo. I ask my doctor lets try it with out chemo and he agreed. I had 8 treatment and I will fine out this Thursday if it is working. Good Luck.

Becky · 08-19-2006, 05:43 PM

Susan

How large was your tumor? If close to or larger than 1cm, chemo (now with the added benefit of herceptin) is for you. Getting an anthracycline and a taxane show dynamite results and adding Herceptin to the taxane portion of your treatment could eliminate the disease forever. It is always better to get rid of it the first time.

Chrisy mentioned trying chemo once. You should go all the way (and at least get 4 roundsor more).

It's a hard decision but you are asking me my opinion and that is what I would tell my sister or best friend to do.

Hugs and kindest regards

Becky

nitewind · 08-19-2006, 06:37 PM

Thanks again, everyone. I never even thought about the fact that I could stop if I wanted to (just an option) I think what I'm really afraid of is the facts about being prone to infections. I am very prone to urinary tract infections, matter of fact, I'm taking an antibiotic right now. Last year I had one so bad the doc was going to send me to a urologist but I fell, broke my hip and ended up in the hospital, somehow the infection went away. I know that no one can guarantee anything, but like I said, I'm so afraid of infections, that's what's really holding me back. Should I be starting chemo with an infection? I hope you ladies don't get sick of me before I even start any treatments. I do appreciate all your help.

Hugs
Susan

Dianaq · 08-19-2006, 07:56 PM

Do you know what the studies are with just chemo alone vs. heceptin alone?

Dianaq · 08-19-2006, 08:08 PM

Susan, My ong. said most studies have been done w/node pos. people. I was just wondering if you have heard anything of studies w/her2 pos. node neg.? Does Chemo even add anything to her2+ node -?

RobinP · 08-19-2006, 09:04 PM

The standard of care treatment for hormonal negative her2 + bc prior to Herceptin was chem, AC. Now Herceptin is added to the mix with great increases in survival, at least so far. Nobody knows how Herceptin alone will delay or stop relapse. Time will tell, but in the meantime, the old standard, chemo, is given with Herceptin, given all the unknowns with Herceptin.

PS You may want to go to adjuvantonline.com for your relapse risk but I know that for even an invasive 1cm and under, the risk is about 10% for someone hormonal negative bc .This is pretty high even for small disease due to the er, pr negative status.

sassy · 08-19-2006, 09:29 PM

Susan,

This is a scarey time and there is much you should look at and consider. As for the rist of infection,you will most likely be given Neulasta or Neupogen (sp?) to help build your white cells during treatment. Although infection is a concern, you can take precautions and meds to assist in building your immune system. I would not think risk of infection should outweigh the probable benefits of treatment.
________
Peak Towers Condo

Val Pfeiffer · 08-19-2006, 09:46 PM

I agree with those who have said that it may be best to do whatever you can right now to prevent a recurrence--the more aggressive the better. That said, you need to do what you are comfortable doing.

Chemo is doable, as others have said. I bought 8 or 9 wigs--different colors and lengths--and tried to have fun with it. I was able to work full-time while getting weekly chemo. I also continued to teach my spin classes three times a week. Everyone is different, but I felt that six months of chemo was well worth it to increase my chances of a longer life. Good luck with your decision, and ask as many questions on this board as you'd like :-)

Val

VaMoonRise · 08-20-2006, 01:16 PM

Susan,

I beg you to do the chemotherapy along with the Herceptin. I don't want to scare you but I feel I must tell you my story because I don't want you to end up like me.

I was first diagnosed with DCIS stage "0" in March of 2004. I underwent a lumpectomy and radiation treatments. They even went back in a second time to recheck the margins. I was assured that I was now cancer free. I went for regular checkups and mammograms every six weeks and everything was going great, my life was starting to return to normal. I felt so blessed to have caught it early. Then in December of 2005 I started with a terrible pain in my right side just above my waist. I knew it wasn't my appendix as I had it removed as a child. I went to my doctor to have it checked out and they determined that it was my gall bladder. I went in to have the gall bladder removed by my oncologist surgeon, the same surgeon who did my lumpectomy. When he opened me up to remove the gall bladder he was shocked to find cancer spread extensively throughout my liver. I am now stage "4" and have mets to the spine as well as to the liver. All it takes is for one stray cell to enter into the blood stream or into the lymphatic system.

I wish to God that when I was first diagnosed as stage "0" that I had been put on Herceptin and given chemotherapy treatments. If I had I may not be stage "4" right now.

Being HER2 positive and ER PR negative means you have a very aggressive fast growing cancer. I beg you to take the advice of your oncologist and the women on this site and treat your cancer as aggressively as you possibly can NOW so that you have a better chance of not progressing in the future.

I too have had a history of UTI infections and even had a problem with them when I first started chemo. I even went to a urologist and had several tests done. I am on medication that helps to prevent UTI's, frequent urination and discomfort. The benefits of chemotherapy far out weigh the risks of infection. Infections can be treated and cured, cancer can't.

Like you I was terrified when I went for my first chemo treatment but it was nothing like I had feared. Everything went smoothly and the side effects have been mild to moderate and very tolerable. Like someone else already said if it gets to be too much and you just can't handle it (which I doubt very seriously will happen) you can always stop or have the doses lowered.

I truly hope you will decide to be aggressive in your treatments. If I could do things all over again and had the options that are being offered to you I would jump all over them.

I wish you all the best. My thoughts and prayers are with you.

Big Hugs,
Nicola

KathyH · 08-20-2006, 02:31 PM

Hi Susan,

I just wanted to share a little of what happened to me in case it might help you in your decision-making process. I had a very large lymph node under my arm that I could feel at diagnosis plus a few more than were visible on PET scan. Because of the large lymph node, I had neoadjuvant chemotherapy (chemotherapy before surgery if the term isn't familiar). I had six months of chemotherapy total. The first three months were Adriamycin and Cytoxan. Before the start of the next phase of chemotherapy (Taxotere and Herceptin) the PET scan was repeated. It showed no clinical evidence of cancer. A large lymph node that was several centimeters completely disappeared clinically(PET scan can only see tumors 1 cm or larger). There may have been cancer cells left but the vast majority of the tumor had disappeared before I even started Herceptin. So the Adriamycin and Cytoxan worked wonders for me. After I finished all six months of therapy and had surgery, they found no cancer cells at all. The side effects of chemotherapy were far and away worth the results for me. I wish you peace as you make your decision.

Kathy

Maggie · 08-20-2006, 03:45 PM

Hi Susan,

All the women on this board, including myself, have been in your shoes. I was scared to death myself. I didn't have a clue as to what they were talking about at first.

I too, am ER/PR negative and Her2 3+ strong. My tumor was 1.2 cn.. I also have, over the years, had frequent urinary track infections and always use a urologist. I strongly advise you to get one at the same hospital if possible, as your doctors and treatments. He can handle this so much better than your family doctor and your urologist and onco can talk should there be the need for meds while on chemo.

Do all you can to help yourself right from the start. Herceptin wasn't offered two years ago when I started chemo

My white count was pretty low on my third A/C and I had to wait till it came up. I had blood work done almost every day at the hospital and as soon as it was up enough, they started again. No problems! They did keep an eye on it.

You'll be in my prayers, too..

Maggie

nitewind · 08-20-2006, 04:20 PM

Thanks everyone, so much! With all of your help and some pushing from Shirley K. I know what I have to do. All of your stories have helped me a lot and I appreciate you caring enough to share and to help me. I'm just gonna close my eyes, grit my teeth and do it!! I hope one day when all of this is done that I have the honor of meeting some of you.
God bless you all, you truly are angels.
Love and hugs
Susan

Becky · 08-20-2006, 04:48 PM

You go girl. Keep posting. We will help you through chemo and herceptin and any mundane side effects you have. Your cure is our cure.

Love and hugs

Becky

RobinP · 08-20-2006, 08:22 PM

Way to go Susan. I am glad everyone shared their experiences to help you out. Isn't it great to be a part of this support group that helps you through the trenches. The women I have met here are truely inspirational and give new meaning to the words strong and supportive. I too hope you keep posting. Remember you are a survivor.

Nicola, I know I have asked this before, but did you ever get those DCIS slides of your re-checked to see if the orginal pathology was accurate. The reason I ask is that I suffered multiple pathology errors, see my story in profiles of courage. Your case is particularly unusual if indeed you had pure DCIS which ultimately relapsed as stage four.

Bev · 08-20-2006, 08:35 PM

Nothing wrong with getting a 2nd opinion. The docs will take care of you. Everyone is petrified before starting. If you need sleeping pills or anti-anxiety pills, ask for them. I did and wound up using very few, but it was nice to know I had them. With AC, I did pre-emptive sleeping. If you decide you're going to sleep the day of and day after infusion, you just don't feel bad.

Did neulasta once. Made me achey. The onc wasn't too concerned about low WBC, said they always go back up.

The hair thing was unpleasant for me. Always had long hair, so the wigs and current crew cut are just uncomfortable. BB

Jean · 08-21-2006, 10:51 PM

Dear Susan,

We all have the same paddle in the same canoe.
We are all worried and concerned but another thing we share on this site, is
a wonderful strong strength that we pass to one another.

I was dx. with a small tumor 3mm afer lumpectomy and my nodes were negative.
Does that mean it is favorable yes - but we all know that t-cells can travel.
Your decison is I believe correct. Yes, chemo does work best with the herceptin.

I was concerned also - but I was more concerned that the Her2 is an aggessive form and I know I don't want that visitor back again.
I am now on my 5th Trt...with one more to go. You can do it...the fear is the greater part....just hang in and touch base with the wonderful support group
you have found here. Be brave and go forward.

All good wishes are being sent.

Warmly,
jean

VaMoonRise · 08-23-2006, 03:10 PM

Hi Robin,

I haven't had the DCIS slides rechecked but I figured that because they had rechecked the margins a second time that they were correct in saying it was noninvasive and because it was microcalcifications and not a solid tumor I trusted the DCIS diagnoses.

I constantly wonder myself if they misdiagnosed me originally but I don't even know where to begin to find out and if they did what can really be done about it now?

Whenever I have asked the oncologists about it they always tell me that what probably happened is that a stray cell entered into the blood stream and metastasized to the liver and although rare that it can happen. I have never really felt satisfied with this answer.

So many questions and not enough answers, it plagues my mind night and day. I worry constantly about this happening to other women. If you have any suggestions as to what I can do to pursue this and to find out the truth please let me know.

Thanks Robin.

Hugs,
Nicola