Be careful what you pray for....

BonnieR · 07-19-2007, 01:27 PM

I have been on the fence about what follow up treatment I should be taking and have been told everything from chemo to nothing needed. So I decided to take the OncoTypeDx test and prayed it would be a sign...
Today got the results: 36, high risk. So suddenly, from being NED, I am being advised to begin Chemo, THC for 4 to 6 doses followed by Herceptin. My head is spinning! Any thoughts would be appreciated. Wht has been your experiences on this combo??
Better update my profile.....

Karen Weixel · 07-19-2007, 01:49 PM

Bonnie,

I think you are NED... the test came back high for possible recurrence. Like you, I had a pretty small tumor, node negative (5 sentinal nodes removed) negative for lymphovascular invasion, grade 3, er/pr+ and Her2+++. I never had the oncotype DX, I just decided to throw the kitchen sink at my cancer. I did dose dense AC and T, 35 rads, a year of Herceptin (I had to fight for it) and now I am on Aromasin for 5 year.

I am almost positive from what I read on your post that this is preventative chemo.

Hope this helps.

Karen

BonnieR · 07-19-2007, 03:12 PM

Karen thank you. I do understand that I am considered NED at present. I guess I was just shocked at the turn of events. Immediatly after surgery I was told I need no chemo, certainly Femara, and MAYBE, Herceptin. Which is the fence I was sitting on. Now the OncoType puts things in a different light. And I am new enough at this that I did not fully appreciate that chemo was used so extensivly as a preventative. I have alot to learn.
So, who here has been on the regieme being suggested for me. THC???

MarieJZ · 07-19-2007, 03:32 PM

talk to jean..... it was her experience that the size of the tumor was not nearly as significant as it's biological characteristics...

BonnieR · 07-19-2007, 06:06 PM

Which Jean? There seem to be a few! Maybe she will see this an reply. I am so grateful you are all here.......

07-19-2007, 06:19 PM

Bonnie,

If by THC, you mean, taxol, carboplatin, and herceptin, I was. If you mean Taxotare, I was not.

I also was not expecting to have chemo (very tiny invasive cancer 5mm, stage 1a, Grade 2, no nodes and no vascular involvement). Ki67 was 20% which is intermediate risk. Didn't do Oncotype test (not recommended I believe for ER/PR-, HER2+++; I though everyone with HER2+++ was considered high risk on Oncotype, but may be mistaken).

Original decision, made jointly with oncologist, was to do herceptin alone. However, my 27-29 came back mildly elevated, so I decided to do chemo after all.

Everyone reacts differently to chemo, and I was 65 and it's more difficult as you get older, so I had a tough time and stopped after two. However, I made some mistakes, including not getting all the meds (for nausea, diarrehra, constipation (the worst for me), and pain) before I started. I think if I had these medications at home, in case, I might have stuck. But other women have had an easier time of it. Just about to finish herceptin--one more to go. Relatively easy, although I always have diarrehea, but luckily no joint pains, etc. If you want any more info on this particular regime, send me a private message or email.

Kate (Tousled) had taxotare and she can advise you on that--she's very helpful.

Alice · 07-19-2007, 06:31 PM

Hi,
I am new to the thinking of chemo as preventative therapy. The onco test was also not available to me, being both er and pr negative. I would like to advise you but I have a different senario and it wouldn't be helpful to you. I just want to tell you to be as informed as possible and to not react or make decisions from fear " lots of luck on that one". This site has many people that have lots of knowledge. They have helped me and I am sure they can help you as well! Please let us know what you decide, we are all rooting for you!
Alice

BonnieR · 07-19-2007, 06:37 PM

Grace, I did not know that, about HER2+ always meaning a high risk on the OncoType test. Why give it to someone in this category then? That is discouraging. It is an expensive test to administer if the result is a foregone conclusion....

07-19-2007, 06:51 PM

Bonnie--as I said I could be mistaken but I remember reading that on this site and I think also on another. Also "Ask an Expert" John Hopkins said Oncotype not given for ER/PR-. Are you ER/PR-? I don't remember.

Jean may know answer to this one. But I wouldn't be discouraged, as you have an excellent prognosis despite the HER2+. My prognosis on Adjuvant Online is 4% mortality in ten years (12% from a cause other than cancer) and 18% for recurrence.

My oncologist recommended chemo for Day One even before elevated markers, but others on tumor board said no to chemo--tumor board was evenly divided, but I suppose this doesn't help, as you want something to give you clear direction. It's really tough making these decisions. Yesterday I decided not to do a PET/CT scan which my doctor was ordering at my request, and even that took a great deal of thought and weighing and judging.

Good luck whatever you decide.

Alice · 07-19-2007, 07:15 PM

Where in the range does a score of 36 lie? I have read about the onco type test but because it does not aply to me, I don't know the numbers. I was just curious. If I can, I will try to do some looking for you, as I am on the computer frequently.
Alice

Jean · 07-19-2007, 09:40 PM

Dear Bonnie,
I read your post...and like you I was told that I did not need chemo/herceptin. When I was dx. 4/05 size of tumor and node
status was the determining factor for treatment. When I did
my research on Her2...I was very unsettled. I even had to fight
to have the Oncotype DX test -(back then it was not being
used as a standard of care) which now is being used at Sloan
in NY...

Mine came back high risk also. Like you the onc. in NY then changed treatment and
said chemo A/C to be followed with Herceptin. I then decided to
see Dr. Slamon...the Father of Herceptin. He told me that my KI -67
levels were high - therefore I did not need the Oncotype DX test
to tell me the test would come back high. There are women who
will come back in the low or med. range. depends on the KI-67 level.
Unfortunately her2 is aggressive and likes to travel. Knowing your
pathologoy report is very important. The grade of your tumor, the
KI-67 levels, in short - the size of the tumor is not the key, more
so the personality of the tumor. Node negative is a favorable dx.
also - but there are millions of cancer cells in a small tumor, who knows
if a tiny micro seed passes through a node and we all know that cells
could pass into the blood system. The most common way is through the
nodes - but that is not a certainty.

Of course your head is spinning, that is only natural. There is so much
information to absorb and it is all very frightening. But realize that this
diagnosis does not mean instant doom. Now is the time to make careful
decisions. The TCH is very doable and many ladies here on the board
have had this treatment. It is now considered a standard of care for
early stagers. See the link I have attached for you.
Your onc. will prepare you for the treatments with the meds to counter the side effects. You will feel tired from the treatments, but many of us
worked right through them. Do not fear the TCH treatments, rather look at them as part of your way of crushing this disease right out of your body. I had 6 treatments of TCH and then herceptin for one year.
I completed my year this past May. It goes fast - it will not seem so
as you start, but it does. Right now your spinning due to the new information...you were wise to have the test - for it proved you did need
additional treatment. In the early days everyone worries about what
is going to happen and how can they handle it. As I said the TCH
is very doable. When I was first dx. I knew very little about bc, I knew
I didn't want it! But by learning everything I could, I started to take
control and calm down, sort things out, and make the best decisions
for my health. You will also...I am sorry that you have been dx.
and need this wonderful board. This is the very best site and you will
have all the support you need. I am here for you...and all the other
beautiful ladies are also.

I have attached a link on the TCH trials which will give you additional inforamtion.
http://www.medscape.com/viewarticle/520244

Sending you hugs,
Jean

Melinda · 07-19-2007, 09:43 PM

Bonnie,
I have just completed the taxotere, carboplatin and herceptin(TCH )regiment. (6/19) Check my signature to see any differences we might have. I was under the impression that I too would not need chemo right after surgery, so I can feel your disappointment when it was suggested to you. Someone told me that the good news is that an ONC will not tell you what to do and that the bad news is that your ONC will not tell you what to do.
Being HER2+ was the deciding factor for me. My onco score was 23... middle of the road. My ONC said that if I was 20 yrs young he would be advising me to have chemo, and if I was 20 years older not to. So I sat on the middle of the fence and decided that I wanted to treat this beast with everything available.
Now as far as TCH... I know that everyone experience is different, but I have found it to be completely doable as they say. I never missed a day of work with the preventative meds such as Zofrn for nausea, ativan for coming down off the decadron. I felt less than 100% about 2 days out of 18... my regiment was every 3rd week. Part of that was the Neulasta shot the next day to keep my white blood cell counts up.
In the end its your decision... and I will be here as well as ther others that have gone thru this to help in any way we can.
Keep the faith!
Melinda
And yes Jean was my angel, when I started this and Harrie another who has just completed it as well, to name a few. So if you decide to go this route, you will have plenty of company

Jean · 07-19-2007, 10:06 PM

Bonnie,
I am sorry you also wanted to know about TCH and effects.
Well you will loose your hair...no biggie. It grows back.
You will gain a few pounds due to the meds. No biggie you will loose after treatment.
You will feel tired like a flue two days after treatment then will rebound
in the next two to three days.
The anit nausea meds will help prevent those side effects....Just take them even if you feel fine and you may think you don't need them.
Take them anyway and stay on them...once the nausea starts it takes
hold and then you have to catch up.
Drink water and keep your body hydrated all the time.
You must flush your body from the chemicals after treatment.
Eat protein rich foods.
You will have a metal taste esp. on certain foods, I found this happened
on my salad dressings, certain foods that I enjoyed - the taste was
destroyed during chemo. I found that sherbert was refreshing.
Have your teeth cleaned and checked prior to treatment.
I stopped all manicures and pedicures during treatment to avoid
any infections. Do not expose yourself to people who have colds.
Your immune system will be lowered during treatment. I had my
treatments during the Spring and Summer - so I did not go through
a flu season. If you are working make sure you clean your phone
and computer each day with anit bacteria wipes.
I also eat yogurt each day...I never had a mouth sore.
You will feel aches and joint pain, I would take Alieve.
It is Important to exercise and take walks in the fresh air.
I did not have a port - all infusions were via my veins.
I used to have my treatments on Thur. this way I had the weekend
to rest and usually by Monday I was feeling better. But if I needed
to take another day I would just take it and rest. Friday I would
feel fine by Sat. morning it would start to hit and I would feel
tired and drained. This would last for about two days.
You may need a mild sleeping pill for the pre-meds which will keep you
wired and you may have trouble sleeping. The steriods that you will take
the day before treatment, the day of treatment and one day after
are the meds that can keep you awake. The mild sleeping will allow you to rest and you will not be exhausted from being awake and then
crashing when the meds are done.
I hope this information helps. As I said it is doable. it may sound like
a lot to deal with...but you can do it...just concentrate on stomping
on this disease and this is the way to do it.

Hope this helps....
Kind Regards,
Jean

hutchibk · 07-19-2007, 10:14 PM

For taxotere, use Hard as Nails on your finger and toe nails before every treatment, with tea tree oil on the cuticles! It will help save your nails from yellowing, splitting, etc.

If it is taxol, take Glutamine powder 3xday (in a shot of juice) to help mitigate the neuropathy in the fingers and toes...

Jean · 07-19-2007, 10:30 PM

Love your photo....You look beautiful!

Regards,
jean

BonnieR · 07-19-2007, 10:34 PM

Thank you all SO much. You have already made such a difference in my life. Just think how important you are going to be in coming months!!
Jean, my Ki-67 level is 90%!
The "T" I will be taking is Taxol, I believe.
Lots to think about. I probably will start next Thurs. It has been 2 months since surgery. And we are moving next week. Just around the corner, but still......
Thanks you all again.....
Bonnie

Jean · 07-19-2007, 10:50 PM

Bonnie,
Best of luck next Thurs.
Will keep you in my prayers.
Reach out if you need anything.

Hugs,
Jean

Hopeful · 07-20-2007, 07:12 AM

Bonnie,

Just for the sake of balance, I wanted to give you this link to my first ever post on this Board and the response I received: http://her2support.org/vbulletin/showthread.php?t=25170

There is some question about exactly what information the Oncotype test is providing to Her2+ patients; enough so that the TaliorX trial, which has divided patients into high, medium and low recurrence risk categories based on their Oncotype scores and randomized the medium risk group to receive chemo/endocrine therapy or just endocrine therapy has specifically excluded Her2+ patients from participating.

Of particular distress to me is the fact that the Oncotype test was validated retrospectively among a group of patients that took Tamoxifen only. In point of fact, the report says on its face, "Test results should be interpreted using the information in the Clinical Experience section below, which applies only to patients consistent with this clinical experience." The Clinical Experience Section reads, "The following results are from a clinical validation stydy with prospectively-defined endpoints involving 668 patients. The patients enrolled in the study were female, stage I or II, node negative, ER positive and treated with Tamoxifen."

It has been demonstrated that Tamoxifen treatment can not only NOT cause cancer arrest in some Her2+ patients, but, in a select group, can promote it. No one is addressing this issue, but I think it accounts for some of the stratospheric Oncotype scores that come back.

My own score was 44, with a 10 year 30% recurrence risk according to the test. I was dx post-menopause, 1.3 cm IDC (9mm invasive, with DCIS) ER+ (80%) PR+ (50%) Her2+++ by IHC, Ki-67 11%. The pathology and the Oncotype score seemed discordant to me. Additonally, from my research I learned that ER+, post menopausal women derived the least benefit from chemotherapy of any class of bc patients. I had lumpectomy, radiation, and declined chemotherapy, having found an oncologist who would treat me with Herceptin without chemo. My treatment plan is 1 year of 3 weekly Herceptin and 5 years of an AI.

You and you alone can decide what is best for you; you are the one who will live with the decision. I just wanted you to know that not all of us go down the same path.

Hopeful

MJo · 07-20-2007, 07:24 AM

Bonnie -- I agree with everything the early stage ladies are saying. I was diagnosed in Nov. 2005, Stage T1b. I started reading up on Her2 and was already leaning toward chemo because I didn't want to take any chances. My Oncotype score came back 32, and I threw everything I could at the *)@_$(#+@ disease. The good news for you is that in two short years there is now an alternative to the dread adiamycin/cytoxan combo that many of us had. I understand that TCH is more tolerable and easier on the heart. Treatment is no walk in the park, but you will get through it. If you take chemo, remember that you will need months to a year before you feel completely reenergized. Don't rush it. Be very good to yourself. YOu'll do just fine.

suzan w · 07-20-2007, 07:32 AM

Hi Bonnie,
Just to add my 2 cents worth!!! I, too was dx'd as early stage, etc. However due to the agressive nature of Invasive Lobular cancer and Her2 +++, my oncologist suggested herceptin. At the time, herceptin had not yet been approved for early stage, without chemo first. So I had the oncotype test done. Since have found that most of us Her2+ gals have a high oncotype result...but no matter...it just proved to me that Her2 is a HIGH RISK!!! My oncologist strongly recommended the chemo...but said that she would also do herceptin without chemo. She prescribed it "off lable" (meaning it was not yet approved for the purpose I was getting it). After much research and 'inner-debate' I opted for the chemo. I wanted to leave no stone unturned! Didn't want to look back and say, "gee...I wish I had done..." Good luck with your decision!