crazy request for my oncologist?

[Kellennea]

This coming Wednesday will be my first 3rd Wednesday without herceptin and I am totally freaking out. Just wondering if anyone has asked their oncologist to keep them on herceptin? Did they?

I'm having a really hard time with not having my "safety net"

K.

[laurab]

I have been on Herceptin for 10 months and I can completely understand your "freaking out". You definitely need to talk to your oncologist about this so that he/she can reassure you or discuss options. I think that I will also feel some uneasiness when my year is complete. I do feel comforted by that fact that they will be checking me every three months and mammo. every 6 months for a while.

[dawny]

Hi kellenea

As a stage 1V, I will be on Herceptin for life, or until it stops working. I understand it must be scary to come off it. Have you asked your onc about staying on it? I don't know if that is something that is usually done?

Good luck

Dawn

[sarah]

yes, I felt the same way. Definitely be sure you feel comfortable going off it.
take care
Sarah

[tricia keegan]

Early stage bc is usually treated with just one year of herceptin, I felt the same as you when my year was up but the further out you get the more confidence you'll get!

['lizbeth]

I was totally freaked out coming off of Herceptin. It felt like my safety net and then . . . Yikes, I was on my own.

Which is totally funny, since I was so against doing chemo and Herceptin in the beginning.

I couldn't just sit around and do nothing. I worked on diet, exercise (with a physical therapist specializing in cancer survivors) and joined a cancer vaccine trial. Now I've joined the ENERGY study. And I made a career change to obtain my HHP, specializing in bodywork & massage therapy. I feel I have greater control of my health and less stress now.

Healthy!

Every cancer survivor has the complete right to freak out once in a while, lol!

[NanaJoni]

Kell - those "CLEAN" remarks in your signature say it all. I only got to finish 9 months of what was supposed to be a year of Herceptin and I still worry about it. Even though Herceptin has minimal side effects we see and feel, it's still a powerful drug. Lizbeth is so right with her advice to put some new things into a routine in place of the 3 week cycle of Herceptin. It's been 7 mos since I stopped the Her and that anxiety of no treatments has faded faster than I expected. Congrats on the clean tests.

[Kellennea]

Thanks ladies!

This morning I had my final muga scan (numbers are the same as they were prior to herceptin - yay). I was talking to the person administering the test and I told him that I didnt want to stop herceptin and he looked at me like I was crazy "you should be excited that you dont have to drive here every three weeks to be poked, get on with your life..." ugh! if only it were that easy.

I still have tamoxifen (woo hoo) < that was me pretending to be excited.

k.

[suzan w]

I felt the same way when my year was up!!! My onc reassured me that it was time!!! She did that every 3 weeks for a while when I would call her up and ask..."are you SURE???!!!"

[chekmark]

I was wondering how you were holding up. Tomorrow is my last one and I am so excited about it and alittle nervous but not as nervous as I thought I would be. I had my muga before my last herceptin. I try to do them on the same day so I only get one IV. I have been trying to stay very busy and not think about it but I do not know what will happen in 3 weeks. I will be having surgery so I assume my mind will be on that and maybe I can slide right past that first no herceptin week. I hope it gets easier for you. Keep me posted. Good luck. My husband will be having a biopsy in 2 weeks so I am trying to stay positive for him and forget about me for awhile, that is so hard when we have been thru so much. Darlene

[CoolBreeze]

I can understand your worry and your feeling that herceptin is your safety net.

A year is the recommended therapy and I don't think any oncologist is going to be able to give you more. So far, studies show a year is the appropriate treatment and that is what an insurance company will pay for - if you talk to your onc, he might put you on an anti-anxiety but not more herceptin. But, you never know, it will be interesting to see if he does.

I think it's time to think of this in a new way. Rather than feeling like your safety net has been pulled away from you, try to do some positive thinking about all the things you have done to protect yourself. Herceptin wasn't a safety net, it was a high wire that led you to the safe ground where you can be stable and secure.

Add an exercise program, or meditation, or walk outside daily, or eat a little healthier. Try to find the places in your thought process that are negative and learn to turn them into positive thoughts that include a long and healthy life.

Medicine doesn't work the way we laypeople think. A little of this is good so we need a little more...that only works for shoes. :) Just know you did every single thing you were supposed to do to regain your health.

Now your challenge is the hardest of all: to begin to think of yourself as a healthy person again, and not as a cancer victim, and to not let each ache and pain turn you to thoughts of recurrence and death.

It's hard to do, I know, but it is a challenge you can master!

As a woman with Stage IV, I wish I could take back every worry I had in the time between treatment and recurrence. It was wasted energy, completely wasted, time I could have spent enjoying my life.

Please try to do the same. If cancer comes back into your life, it will make itself known. But, the odds are great that it will not and in the meantime, you have a wonderful, meaningful life to lead. Please enjoy it!

Big hugs to you! :)

[chemteach]

I really like CoolBreeze's response to remain positive and love each day. I'm just in the beginning of this journey and have learned so much from all of you. I must laugh every day and stay upbeat and positive, and then the reality steps in about this disease. That causes anxiety which makes me grumpy and sad and worried. I don't want to be overly optimistic, but I certainly feel better when I think positively. So does my family and my students. I'm pretty sure I will feel anxious too when I get off the Herceptin late next year. I hope you keep posting because your journey will inspire mine.

[NEDenise]

CoolBreeze- Love the highwire imagery! Great analogy!

Kellenea- I totally understand what you're feeling. My Herceptin doesn't stop for another 6 months...but I already think about whether to try to find a 3 year trial nearby. I'm trying to look at it the way our more experienced sisters advise...but I'm with you...it's scary.

Try to stay focused on being well!
Denise

[CoolBreeze]

Chemteach - I am a big believer in thinking positively. You will find that controversial in cancerland, but in my estimation the people who dislike the idea of positive thinking misunderstand it. Yes, there are lots of wonderful women who thought positively who didn't make it - thinking positively will not cure you, nor even change the course of your disease. However, positive thinking (and especially finding humor in it all) make all the things you have to go through in the course of this disease - whatever stage you are in - much easier.

If you check my blog, you'll see that I write humorously on all kinds of awful situations. You have two choices in my estimation - whining, complaining and living in fear - or getting on with it and finding good where you can. And, whichever one you choose is just that - a choice.

Not that I don't do a bit of whining, as my family will attest. :)

The only thing we have control of in this disease is how we choose to deal with it. Kellennea and most women will eventually stop treatment and go back to living a life without cancer. And, I hear it does get easier with distance although I wasn't afforded the opportunity to know, at least, in the conventional way. My surgery may give me that chance though.

Ending treatment comes with a certain amount of fear and uncertainty that is really difficult for lots of women. I do know women, one a good friend, who spend so much time (years after dx) thinking every ache and pain is cancer returning, and getting tests and seeing doctors for those aches, that their lives are heavily impacted. I'm not saying some of that won't happen to everybody and of course, you have to report things that a lot of people can just ignore - but the trick to recovery is balance, and learning how to be aware without living like you still have cancer when you don't.

That takes time, I don't think anybody can do it right away but that's what I meant about it being a challenge.

Being educated about your cancer and new treatments is helpful and there is nothing wrong with getting in a trial to extend treatment or herceptin. But, even that will end so I don't think believing it's a safety blanket is mentally helpful (although it's certainly normal.)

Anyway, those are my ideas about it, and sure, there are others who have different ideas and that's fine.

Chemteach, I work in a school - a high school. I'm the principal's secretary. I have been off since my surgery October 3rd and am eager to go back although I won't until January. Are you a high school teacher? Students and the busy nature of a school job definitely helps take your mind off yourself and also school people are just wonderful! :)

[chemteach]

Coolbreeze, I read your blog, and my philosophy is similar to yours. You made me laugh even when it really isn't funny. Liver chips in urine, and the potholes on the road to Sacramento. I missed the first 10 days of school because of my mastectomy, but I needed to be in the classroom with my students. I'm the chemistry teacher. They are on this journey with me, and we laugh together at my flat chest, hair loss, and so on, yet they are concerned. They keep me focused on what is important and are my inspiration. Apparently, I inspire them because they've been incredibly supportive with their words, thoughts, prayers, hugs, really cute hats, and working hard when I must miss for the chemo. I was an honorary team captain for the football team because I love all those boys. They've been or are my students. I cheer for them. They've learned with me, and I know that knowledge is powerful for all of us whether it's good news or bad. Faculty members are positive and in good spirits for me because I am, and I must agree with you. It is all about how we deal with this.

[Becky]

I am going to throw you all a curve ball. I did ask for more Herceptin and I did get more (see my signature). However, there was a rationale I had that you will not have.

I started Herceptin late. The trial ended in May 2005 with Herceptin's fantastic results so I started after chemo and rads. My year was up in June 2006 and I had asked my onc if I could continue until the end of September (my 2 year cancerversary) since the first 2 years have the highest rate of recurrence. I would have also had my ooph a year and had been on Arimidex (vs Tamoxifen) a year. Secondly, a European study had come out that Herceptin + Arimidex on Her2+/ER+ metastatic women. This study showed these women had progression free survival for 2 years before chemo had to be added so I figured it would help me too.

Anyway - he said yes but remember, Herceptin with chemo as you had, works better than chemo alone. And I had a story to tell - since I started 4 1/2 months after my last chemo, I ended up close to my 2 year from surgery mark and a land mark European study came out to help my case too. You actually are better off than I was that you had the first doses of Herceptin with the chemo.

[Jackie07]

K,

I had to stop Herceptin at 22 weeks after beginning chemotherapy because of reduced MUGA score (even after it was given 'weekly'). That was more than 3 years ago, and I've been doing fine so far.

In dealing with my brain tumors (unrelated to BC), I learned the motto of the physicians - 'First, do no harm' - to be true.

There are studies showing that many older people have cancer cells in their system. I've read that many people are living 'peacefully' with those cancer cells.

It's understandable that you might have some anxiety over losing your 'safety net'. But you've been treated for cancer, you are no longer on free fall. And there's a potentially better, stronger safety net out there in the future in case you need it again.

[chekmark]

Ok Kell, I had my last herceptin today and I had a chance to talk to the oncology nurses and practitioner and asked for some insight on getting over this fear of not having a safety net. I am actually pretty excited about it being over today. If it comes back it comes back, it is out of my control but I would prefer that it doesn't of course. What 1 nurse said to me and her sister in law just finished herceptin 1 yr ago. She said to keep in mind that they now treat cancer as a CHRONIC condition and not terminal like it used to be. They treat it like diabetes, heart disease, chrones. etc. The herceptin is so effective but if it comes back they will tackle that hurdle just like they did this time. She said that treatment has come so far and the standard of care is what it is. We are very fortunate to have caught it early. She used the word cure several times during my treatment (although we all know how we really feel about that word). She said stage 1, 2, and 3 have such get response to care and great outcomes. Evens stage 4ers are doing so well these days with herceptin.Take a deep breath and enjoy your newfound freedom of being NED and no more IV's ever 3 weeks (hopefully forever). Good luck. I will touch bases with you and compare notes. I am curious how I will feel in 3 weeks. Take care and have a great thanksgiving. We have alot to be thankful for. Darlene

[Kellennea]

I have to say, out of all (okay like 3) of my online support groups, you ladies are my favorite! I so wish I would have found this site when I started treatment instead of when I was ending it...

Thank you again for your responses, I feel a little better.

My Mother (a 3.5year lung cancer survivor) made me laugh today. She said " we all know that we could walk out of the house, get into our cars and get into a car accident or get hit by a truck but we dont stop driving or walking around. You should "get a clue" (she actually said that) Start living your life, you are alive. You have done everything possible to treat this. Good job. Now, more smiles". She's a funny one. Love her to pieces :)


Darlene - Ummmmm, YAY!!! SO glad you are done! and I really hope that your excitement stays with you :) and yes, we all have a lot to be thankful for!

Kelly.

[chemteach]

Your support and comments are all wonderful, and I think of how fortunate we are to have so many treatments available that change almost daily. So glad we have the ability to network with each other and ask for opinions and support.
Maybe this belongs on a different thread, but I'm not sure how to do that. I had my fourth infusion of TCH today. Last time my onc told me that only 4 treatments and a year of Herceptin would be enough for me. Today I had a different onc because mine is on vacation, the department head, who suggested the original 6 treatments because I'm getting through these so well and the standard is 6 treatments. Now I don't know what to do. The chemo is not fun, and I would be glad to be finished, but if 6 is better and improves my chances of this disease not returning later in life, should I go through the 6 treatments after all? The first onc said I was pretty low risk and thought 4 would be enough. Anyone have any thoughts? Thanks so much.

[Kellennea]

Chem -

I did 6 rounds of TCH and two friends who are also Her2+ also did 6 rounds. I have one friend who is triple negative and she did 4 rounds. Another friend is ER/PR+ Her2-, she did 4 rounds. Its hard to say. Everyone seems to be different. But wow, nothing like throwing a loop in the process.

Maybe meet with both Oncologists and hear each of their reasoning . Good Luck :)

K.

[Lauriesh]

I just had to comment on Chekmark's comments about what her nurse said. Stage 4 is not a chronic condition. It is a terminal illness, with over 40,000 women dying each year.
I am sorry, I am not trying to scare you, but as a stage 4 woman, I take offense when medical professionals lump it in with diabetes, etc.
While life expectancies have increased, many women, especially young women with aggressive disease only live 2 -4 years.

I was diagnosed stage 2 in 2005, and diagnosed stage 4 in 2010. I wish I wouldn't have spent one minute worrying whether the cancer would come back or not, as it is a minute wasted.

Laurie

[pibikay]

Hi All
I have not logged in for sometime as I had to care Hema through her abdominal pain and a common cold.Hema;s Onc is of the view that intially 6-9 doses of herceptin followed by tykerb will be the best for a stage IV patient,
Hema had 6 courses of mixed chemo in five of which she had herceptin and four more herceptin all in 3 week intervals.
During her last visit I asked the Onc what is lying ahed.He said if Tyberb stops being effective we have to go in for new options which are now avsilble
All the best for all of my sisters

[NanaJoni]

Teach - I was supposed to get 6 TCH but due to complications (and hospitalizations after 3 of 4 tx), only finished 4. Then only got to do about 10 months of Herceptin instead of 12. I'm doing great, NED, but still have that lingering feeling "What if..." about not finishing all the scheduled treatments. My onc assures me that as a Stage 1, we did enough. Sometimes I think I'd feel the same feelings if I'd finished more tx's - it's just the standard fear of recurrence regardless of how much we do. But as each day goes by I get more content with what we did and less worried about the future. From other postings, that seems to be the usual feelings each of us goes through. Your decision has to be right only for you. Wishing you the best.

['lizbeth]

Oh, I wish I had done 4 instead of 6 treatments. I didn't do so well, after a few treatments I was worn to a nub and didn't have the strength to stand up to my oncologist, who, after the 3rd treatment, insisted on more.

Then a study came out that showed a lower re-ocurrence rate in 4 treatments over 6. Argh. If I could redo, I'd put my foot down and say No! No! No!

However, I'm dealing with side effects that affected my cognitive function. With hindsight being 20/20, I wish that I had done more to protect my poor little brain from cancer treatment.

Where is that study? Probably posted somewhere on this site.

My advice - go with your womanly intuition. If you feel inside the best choice is two more TCH, then do it! If your own instincts tell you that you'd be okay without it, then that is likely the best choice. Listen to your body, do your research, ask questions.

That is my 2 cents,

'lizbeth

[chekmark]

Chem,
I say whats another 6 weeks, you already know what you can tolerate, you already lost your hair. It so frustrating when we get conflicting treatment options, it can never be simple. Now that I am done it is easy for me to say go ahead and get the 6 but if I was still in chemo I would probably be where you are at and think that 4 is enough. If there was just a litte dial that we could turn and it would have the answers we would be set. Whatever you decide it will be the right decision for you. Good luck to you. I hope you continue to do well. Herceptin is so much easier. I hope you have a great holiday. God Bless.Darlene

[CoolBreeze]

I might find another doctor for a second opinion and use him as a tiebreaker - I'm not sure why they would put you in this spot now but you need to understand both sides of why they are suggesting lengths of chemo, and figure out what gives you the best odds.

I agree with Laurie, Stage IV is not a chronic condition, like diabetes, and any nurse who tried to minimize my disease by saying that to me would not be my nurse for long. In fact, I might suggest to whatever doctor supervises her that she go back to school and get retrained. Stage IV breast cancer is a terminal illness and there is no cure. While if it is confined to the bones, many women can live a decade or more, that's a far cry from it being a chronic illness that can be treated indefinitely.

Sometimes people, in an effort to try to put the best spin on a situation, say unhelpful things, but it's my belief that a medical professional, even if only a nurse, should know what they are talking about. If they have the desire to put a positive spin on something, they can do so without pretending it isn't what it is. Saying "there are new advances all the time" is true. Saying "it's a chronic condition that we can treat for decades with herceptin" is not. They shouldn't be lying to you to keep you from being scared.

[Lien]

Hi Chemteach and others.

I was diagnosed in 2004 and never had chemo or Herceptin and am happily dancing with NED.

Treatment is tough, but for many finishing treatment is so scary they'd rather stay on it. After you stop actively fighting the cancer, it feels as if you are a sitting duck, waiting for the gun to get you.

This fear and anxiety is part of the deal. It comes with having a cancer diagnosis. But we can't stay in treatment forever when there's no evidence of disease. We have to take the plunge and move on. However scary that may seem, it is doable.

Hang in there, Girls! You can do it!

Hugs

Jacqueline

[NanaJoni]

I know it may sound crazy but we all have different coping mechanisms. Even at 63, I sometimes feel like the cancer and treatment were like pregnancy - took around a year to start, finish and recover; had a great outcome almost like a new life; you forget the bad parts quickly; life is wonderful again. And I'm laughing as I just had a thought: "And you never want to do it again!!!"

[Jean]

So normal to feel concern when your last herceptin treatment has arrived. I have said many times I wish
there was a tune up session of herceptin...something like a 5,000 mile tune up (like our cars).
lol....

But the time comes when treatment ends and we are pushed out of the nest to live on. Sort of like seperation anxiety.

Time - time is the only healer. As the weeks pass you will begin to adjust not going in for treatment. Sounds so strange doesn't it? That we would miss having herceptin. After a few weeks you will see that you are
really ready.

Best wishes to Kelly and Chekmark and huge Congratulations on finishing your treatment. Before we know you will be posting your 1st cancerversary.

hugs,
Jean

[chekmark]

Just for the record, my nurse did not say that stage 4 was treated as a chronic condition. I am sorry if it was misinterpreted that way. She said that stage 1, 2 and 3 were since there is such a good response and that even stage 4ers are doing better with treatment and living longer. I am so sorry if I offended anybody. I was only repeating what was said to me. I thought this was a support group.

[chemteach]

It's tough to make this call on whether to go with 4 or 6 rounds of TCH. I tolerate it well, yet I hate how awful I feel. I've lost my hair. Another doctor friend of mine said, "What if there's another lingering cell somewhere?" I want them all gone so I don't have to repeat this in a few years. Is a 6 round treatment more of a guarantee than a 4 round treatment? No one can make that call. Here I am, a Stage 1 little bitty cancer, and you ladies out there with big biopsies and multiple chemos and liver resection surguries and hospital stays are inspiring and nurturing us newbies. It is a time to be thankful for you, and my prayers are with you daily! I shall focus on the good in all this. You are all part of the good.

[NanaJoni]

Chek - I think most of us understand what you meant by "chronic". Having worked in a college of medicine for 15 years, most health professionals would classify any treatment that is ongoing for months or years as chronic, regardless of prognosis. But many of us have had bad experiences and are defensive for each other that we could get bad advice. We all bring a lot of emotion to this board - it's so easy to misinterpret written responses. I would hope that many of our stage IV folks would chime in that they feel their conditions are chronic and many have been in treatment for years with a great quality of life. Cancer and its treatments are a rollercoaster ride for sure. I was desparate for as much info as I could find last year when I was making decisions and doing treatments, but ultimately, those decisions were between me and my docs. The key is having a medical team you trust with your life.

[chekmark]

Thanks Nana for understanding and not biting my head off. Again I apologize. I have an outstanding medical team and if I had to do it all again I would continue with them. I was just asking for alittle insight but it got blown out of proportion. Happy Thanksgiving everyone.