Be careful what you pray for....

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!

harrie · 07-21-2007, 12:45 AM

Hello Bonnie,
I did the 6 rounds of TCH (taxotere, carboplatin, and herceptin) and I am very glad that I did! If you look at my profile, I had a very small DCIS invasion, very similar to Jean's and Melinda's. Yes, there were days when I felt pretty crappy, BUT it was all manageable. It was an aggresively conservative choice to undergo chemo, but I have absolutely no regrets. I worked full time during the entire treatment and exercised and did yoga pretty much throughout the course of tx. We did it, you can do it, and if you need any suggestions on managing the side effects you should have no problems finding help over here. I finished my TCH 5/11 and I feel absolutely great.
All the best to you.....
Maryanne (harrie)....

Lani · 07-21-2007, 03:29 PM

GO TO THIS LINK AND CLICK ON THE AUDIO INTERVIEW WITH DR. JULIANNE SMITH OF PALM SPRINGS. She is an oncologist who had breast cancer herself and had chemo and herceptin and continues to practice while on oxygen due to congestive heart failure. She had lymphoma in childhood, so the radiation therapy from back then, plus chemo, plus herceptin were too much for her heart. She is empathetic and knows what it is to go through chemo, having gone through it herself. I have met her and she is just the type of person you could talk to/with who could provide an opinion based on her knowledge as an oncologist and her knowledge having been on the receiving side of the treatment. Any information she could provide you with would be doubly useful as it would come from someone who had "been there" and that might calm you. I don't know if she is still on oxygen, what has happened to her since 2005, but she was very easy to talk to (I sat next to her at a luncheon at a conference)

TCH is much easier on the heart than Adriamycin and other anthracyclines were, so you are lucky the trend is now to TCH.

Click on her interview and don't be scared--as others have said TCH is easier than AC from their experiences and her situation was truly unique (history of childhood cancer, radiation, etc)

I am sure now that more time has passed and herceptin has been approved (she got it off-label) she has more to say!

Hope this helps