Be careful what you pray for.... [Archive]

Grace

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....

Grace

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!

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)....

BonnieR

07-21-2007, 08:40 AM

Wait, there's more! I sent the OncoType result to a oncologist who I used for a second opinion and she felt it was invalid in my case because the test hinges on Invasive ductal cancer and my small tumor was mostly DCIS. She tried to explain the biology to me, and I think I am a pretty smart person, but I could not begin to understand her. She offered to contact my primary onc to ask again about the source of the tissue that was sent. And to suggest a second look at my original slides from the biopsy where all my cancerous tissue was removed, supposedly....
I am so confused right now. IF I was to start chemo next week I would need to stop my Femara NOW, try to get dental cleaning, all the practical things you have suggested here...and do a completly new mind set.
But chemo is not to be decided lightly either, if it is not indicated. I am now wondering if I should just do the Femara and add the Herceptin which was the original plan.....
We are also moving next week...
If you want God to laugh, just tell him your plans......
thank you all for being here. I know there are others struggling with bigger issues but this is the biggest thing I have ever had to decide....

AlaskaAngel

07-21-2007, 09:59 AM

Making the decision IS tough. But whatever decision you make, the people here will support you.

It is only on the last decade or so that computerization and things like the Human Genome Project results have been available for cancer research. Some of that research is now starting to influence treatment and provide less toxic treatment choices. Without those changes in information technology, treatment has been quite limited and basically chemotherapy with or without radiation has been the only shot in the dark that was commonly used. What do oncologists have to gain from recommending against doing chemo? When chemo is recommended they have nothing to lose. No one blames them if it doesn't work.We tend to believe that it takes something really toxic and nasty to handle cancer. That is a mindset of fear, and not necessarily a reality. There are indications that the risk/benefit of chemotherapy and radiologic treatment and repeated radiologic testing long-term have worse outcomes. Some oncs have recognized that, and in the case of patients who are most unlikely to benefit, are simply trying to make sure those patients are not overtreated and ending up at HIGHER risk rather than lower risk.

Remember, the first people to benefit from Herceptin were the ones who believed that it could offer something better than conventional treatment. All the research that creates better and less toxic treatments won't make a difference if we aren't listening to advice about them.

There is no reason to rush into making the decision. Take your time, and research it as best you can.

AlaskaAngel<O:p</O:p

BonnieR

07-21-2007, 12:34 PM

Thank you Angel!
I had a moment of clarity while driving today. (After I drove past my exit in a fog! lol). I have been feeling great pressure to DO something. Or I should say, I am being scheduled for treatments I have not decided upon yet. I know time is of the essence but since at this moment I am considered to be NED, and since the suggestions of Herceptin with or without chemo are for preventative measures I am wondering if I have time for another opinion. Since no one seems to agree what is best in my case. Do you have any experience with how long I might delay this process? It has been 2 months since my bilateral mastectomy. I am taking Femara.....
Have any of you waited in these circumstances?

AlaskaAngel

07-21-2007, 03:03 PM

When I found out chemo/rads/hormonal treatment was recommended for me in 2002 I tried to get any kind of an answer from my oncologist as to whether delay would in fact make a difference. He would not answer that question. It seems logical that the sooner the better, but has that been proven?

Here are 3 different studies:

http://www.asco.org/portal/site/ASCO/menuitem.34d60f5624ba07fd506fe310ee37a01d/?vgnextoid=76f8201eb61a7010VgnVCM100000ed730ad1RCR D&vmview=abst_detail_view&confID=34&abstractID=32025 (http://www.asco.org/portal/site/ASCO/menuitem.34d60f5624ba07fd506fe310ee37a01d/?vgnextoid=76f8201eb61a7010VgnVCM100000ed730ad1RCR D&vmview=abst_detail_view&confID=34&abstractID=32025)

http://www.turkjcancer.org/text.php3?id=7 (http://www.turkjcancer.org/text.php3?id=7)

http://jco.ascopubs.org/cgi/content/abstract/24/30/4888?ck=nck (http://jco.ascopubs.org/cgi/content/abstract/24/30/4888?ck=nck)<O:p</O:p

AlaskaAngel

07-21-2007, 03:21 PM

http://findarticles.com/p/articles/mi_m0PWK/is_2006_May_10/ai_n17214894 (http://findarticles.com/p/articles/mi_m0PWK/is_2006_May_10/ai_n17214894)
<O:p</O:p

"Adjuvant therapy usually begins between two and 12 weeks after surgery. It includes chemotherapy and/or hormone therapy, as well as radiation therapy."<O:p</O:p

BonnieR

07-21-2007, 03:21 PM

Angel, your name is appropriate!! It was so thoughtful of you to send those links. In quickly reviewing them it looks like, as usual, opinions differ! But it seems I might have a bit of a window still. I printed them to study.
My onc would only say that is stands to reason that it is better to be going after one cell early than many later. Which we all would agree with...
thanks again

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

BonnieR

07-21-2007, 03:33 PM

Lani, thank you so much. But I don't see the link. Can you post it again??
She does not come up on a Google search....

harrie

07-21-2007, 05:43 PM

Whoa Girl!! You sound like you are on the same roller coaster ride that I was on!! I was right there 6 months ago where you are right now....Like: bad news (malignancy), good news (small invasion), bad news (what they recommend chemo???), ....know what I mean? The bottom line of the good news that I kept telling myself is that if it were not for the fact that our diagnosis showed such a small invasion, it leaves me with more choice in the matter. Another thing is either option is a win-win situation (to do or not do chemo).
Regarding the Oncotype Dx, mine was mostly DCIS with a 6mm invasion. Mine was considered a good candidate for the Oncotype testing according to my oncolgist.
I know it would not have been a bad idea to forgo chemo. I know that doing chemo cuts my relatively low recurrance score down a bit more. So I decided to do the TCH. I stopped my Arimidex, did my 6 txs of TCH, and now I resumed my Arimedex and am doing herceptin alone.
I had my surgery mid November, 2006, and I began my TCH end of January. In between that time I was on that same roller coaster ride that you are on. I flew from Hawaii back up to CA for a consultation with Dr. Pegram at UCLA regarding the recommendation for chemo since he was the expert with the HER2. My meeting with Dr. Pegram is what gave me helped me make my decision.
I feel good about my decision. I did the chemo. I feel great.
Maryanne (harrie)

Grace

07-21-2007, 06:33 PM

Harrie--every time I see your second profile, I think I'm looking at mine, even to the 4.7 amplified. And I'm right breast, not left. Glad to hear you're doing well.

harrie

07-21-2007, 06:44 PM

Grace, I find it very reassuring that there are others in my situation making similar decisions. It was a tough decision to make and at the time I knew of no one like me. This online site that I found by accident (no one told me about it) has been absolutely wonderful for me.
Maryanne

Lani

07-21-2007, 07:13 PM

http://www.breastcancerupdate.com/download-audio/bcu/2005/7/default.asp

BonnieR

07-21-2007, 08:11 PM

Got it Lani. thanks!

janet11

07-23-2007, 06:05 AM

Bonnie, I'm one more who went through 6 cycles of TCH (Taxotere, Carboplatin, and Herceptin) and found it very doable. Good luck with whatever you decide to do!

Janet

BonnieR

07-23-2007, 04:55 PM

I have had alot more "drama" since I visited here last! I had received a second opinion from a City of Hope doctor awhile ago so I sent her the recent OncoType test result. She felt it was "invalid", depending on the tissue that was sent. I was unable to follow her explanation of the biology involved but she kept saying it was important to know what material was actually sent. So I went to the pathology lab today to have the director of the lab (who also did my reports) to explain this all to me. And you know what he said ? "Because you were coming in today, I reviewed your slides and I found an invasive tumor that I MISSED the first time"!!!!! Never would have known this except for me going there. (This is the same lab that took TEN DAYS to mail out the OncoType tissue because the girl who does the mailing was on vacation!). He did say that the tumor was very small,, residual invasive. But high grade. I am still probably Stage 1, maybe T1B (what is that?). Also said Oncotype is "waste of time because I had high grade to begin with". He said my situation, patients in the grey areas, are the worst to know how to treat because it is so ambigious....a "crap shoot" to use his term. He also said that sentinel node negative is not as helpful information as is sentinal node positive. (a sure thing)
So here I sit, on the fence. Or with one foot on a banana peel.....trying to establish some equanimity......
Thanks for listening....hope it made sense....I am not sure it did for ME!! lol
Bonnie

Hopeful

07-23-2007, 05:50 PM

Bonnie,

So glad you kept questioning the lab so that this came to light NOW. T1b is "cancer staging speak" for an invasive tumor between 5 mm and 1 cm in size, so very small. I know you must feel like Alice falling down the Rabbit Hole about now. I guess the thing to do is to tell your oncs of the revised pathology as soon as the director gets you a revised report - he IS going to do that for you, isn't he?

Hopeful

BonnieR

07-23-2007, 05:58 PM

I had him FAX the report across the street to the CCC where my onc is. He said she will be all over this new information. And I made him FAX the City of Hope also to give them some clarity...
When I walked into his office he said he had more news for me. He was typing something and actually asked me "how do you spell 'brain'?" I thought for a minute that he was talking about MY report!! What doctor cannot spell "brain"? I asked him if he had spell check on his computer for the more technical and challenging terms in his field and he said yes but HE had to input the words correctly to begin with.... Figures.....

Grace

07-23-2007, 06:24 PM

Bonnie,

Are you planning to send your slides to a different lab for a second pathology report? This pathologist sounds somewhat . . . careless. . . . dim. I would think considering the issues you've had that your insurance would pay for a second opinion. Also, if he had this opinion about oncotype as it relates to your pathology, why did he send the slides out in the first place? Didn't the oncologist and the pathologist work together? I believe from what I've heard that the test is quite expensive.

As Hopeful says, it's still a very small cancer and, in fact, Adjuvant Online doesn't distinguish between 1a and 1b in prognosis. Also, did he give you what you went for: did he tell you which tissue was sent for oncotype testing? I hope so. None of this is what you need now, but it'll be over soon, you'll be back home, and life will start to seem normal again.

BonnieR

07-23-2007, 06:42 PM

Grace, he DID say that the City of Hope doctor was mistaken in her assumption of what tissue was sent. But honestly, after the NEW news, that became rather moot in my mind. My numb mind.
I think my onc ordered the OncoType as a tie breaker since no one knows what to do with me and I asked about it. No one told me that it was probably not indicted. Nor the cost. Extremely expensive. My first clue was when the company that conducts it phoned me offering a payment plan and/or financial assistance to pay for it!!!!
I am considering going to see a Dr at UCLA for yet another thought on all this. But it is looking like chemo is inevitable. I just have such trouble coming to terms with using a treatment for something that I dont even know exists!!
I think that your suggestion is a sound one. Get those slides reviewed by someone else....
I might add that this is also the pathology dept that told me to return in 6 months for a repeat mammogram. I decided to get a second opinion of that which resulted in a biopsy and the dx....
At least the CCC where I would be treated, although part of the same hospital campus, has an in-house lab. Although he is the overall director, I think....
thanks!

Grace

07-23-2007, 06:51 PM

Bonnie,

If you decide on chemo, you might want to read the synopsis I posted today from ASCO. It discusses best practices for taxol and, I think, taxotere, with respect to schedules. It had some interesting statistics, although I must say I preferred every three weeks, just for the convenience.

Good luck and keep us posted.

Grace

07-23-2007, 06:54 PM

One more thing--we are close in situation. I also got a probably benign, come back in six months. My husband was taking a trip to South American for seven weeks and wouldn't go unless I had a definite benign finding, so I went to a breast surgeon, who did a biopsy, and it was DCIS, later found, like you, to be invasive: 5mm. But now I even wonder about that, as my pathologist was careless also.

Hopeful

07-23-2007, 07:42 PM

Bonnie,

I am so sorry you are having to deal with this confounding uncertainty at this time. I am with Grace on this, get a GOOD second opinion and maybe a third on those slides, since the original opinion seems questionable. This part of the process (i.e., getting your slides read properly) should NOT be this hard. I know you can fed ex your slides to Johns Hopkins in Baltimore, for example (all their info is on their website) to have them reviewed by their pathologist. Many of the others on this Board can suggest other top cancer facilities that have a similar program. This is the one part of the treatment that does not require you to make personal visits, so you have a lot of options for pathology review.

Hopeful

tousled1

07-23-2007, 08:12 PM

Bonnie,

I would have to get a second opinion on the pathology. You still have time to do chemo/herceptin. I'm amazed at the mistakes that are made. To me those mistakes should just never happen.

BonnieR

07-24-2007, 04:30 PM

Everyone, thanks for your thoughts on second opinion re: the slides. I was on my high horse and wanting to do that too. Then I thought about it and realized that other opinions are not going to show LESS cancer. And even if they discovered MORE, that would only seem to suggest that chemo is indicated even more too. So despite the shoddiness involved, the outcome is the same.
I dont want to do chemo but would always feel regret if cancer returned. I thrive on regret!! And , as much as I want to, I really can't entirely believe the doc who says I am disease free and need no further treatment....I will probably therefore begin TCH this week. Even though we are moving at the same time....because there are scheduling conflicts in the upcoming weeks as well. There is never a good or perfect start date!!!
SO, my next question is, what was the first day like for you?? Are symptoms particularly troublesome the first time? Will I be okay in a few days to go off on a lark that I have planned for and looked forward to for a very long time? And is it true hair loss is usually around 2 weeks? I read that it is good to get a short haircut ahead of time and I have done that.
No one (but YOU guys!) told me to get a dental cleaning ahead of time but I did that today. So I guess I have been preparing for this decision. Was just not ready to surrender.

ETA: another reason for not getting more opinions on the slides is that City of Hope DID confirm the intial cancer findings when I went there for a second opinion....

harrie

07-24-2007, 04:37 PM

Bonnie,
When I started doing TCH, I didn't really feel the significant effects until the 3rd treatment. My treatments were 3 wks apart. In fact after the first one I don't think I hardly felt a thing. The toxic effects are cummulative and that is why the later ones are felt more.
My hair started falling out on the 11th day following my first treatment! I just buzzed it after that.
On my lunch hr and need to go...
Maryanne

BonnieR

07-24-2007, 04:54 PM

That is good to know Maryanne. Thanks for stopping by on your break! I guess I was concerned about the infusion reaction I have read about in relation to Herceptin. Or cardiac incidents.
I have still been taking Femara. How critical is it that I stop that ahead of time? I need to call the onc office and find out.....

Melinda

07-24-2007, 08:33 PM

Bonnie,
What Maryanne says (Harrie) is truefor both of us. The first two treatments are relatively easy. I received Neulasta the day after each treatment to keep my wbc count up, mainly becasue I work in a retirement community. If treatments were on Thursday and the Neulasta on Friday I used the weekend to recover from the Neulasta shot and that hit on Sunday. Other than that... I felt fine for the first two treatments. AS for hair, I wear it short and before the first treatment I got it even shorter and then right begore the 3rd... I got something close to about a 1/2" crop. (Close to a GI Jane lool) That lasted until about 10 days after the 3rd treatment and then it got so thin I opted for a wig. by the fourth one I shaved my head shiny and smooth... it made me feel like I was in control, and not only that but I looked better! Bandanas and scarves are all the rage this year so I really feel quite comfortable. AND FASHIONABLE!
I can not say enough about the importance of taking your anti nausea meds... BEFORER you need them. I usually took them at least in the AM every day for 4-5 days after. THe biggest pain inthe neck is the decadron that they have you take the day before, the day of and the day after. IT has a tendency to "wire" you and sleep does not come easy those days, especially the day of treatment. ASk for some type of sleep aid or Tylenol PM, but I found that did not help so I asked for ativan. That helped!
Drink plenty of water and keep yourself hydrated at all times. Consider it a flushing of sorts taking all the bad #$*& away. You will probably expereince what is called "metal mouth" and it last for about 5 days or so.
During this time you will find what foods taste good to you and what does not appeal to you. I thrived on eggs, bananas, whole wheat bread with peanut butter and sometimes lemonade, and for whatever the reason hated sweets, but no I did not lose weight, in fact I gained 15 pounds over 18 weeks! People say that once you are finsihed it will melt away but nothing has ever melted away on this body except maybe if someone put ice cream on my head in the summer. Walk whenever possible exercise and sunshine always made me feel better.
SOme peole advise using Biotene mouthwash to prevent mouth sores. I did not get any but used Prevident toothpaste that my dentist prescribed for me, after having major dental work done prior to treatment.
Its a very doable treatment, I continued to work throughout my treatment missing no days at all, and some weeks worked 6 days. I am a culinary manager, so its not like I sit at a desk all day either.
You can do this.... I know it. We will be with you every step of the way. Feel free to email me if you wish even if its just to vent
mzerweck1@verizon.net
Go and move, and have a fling before things get cumulative with your third treatment. I found that to be the toughest, and by the fourth I was back to "normal". They will keep watchful eyes on your CBC. I was unprepared for low platelet counts during my 4 and 5th treatments so they were delayed a couple of days. It took me by surprise that is why I am mentioning it to you. If you are anything like me.... I wanted all of this to be over YESTERDAY and was not happy to hear I had to wait until the platelets went up. A minor inconvenience in the scheme of things. I am happy to report it is all over except for the herceptin now.
These are my experiences, and as I said, everyone goes thru this differently to some degree..... but it is doable! I have rambled long enough
Keep the faith!
Melinda

BonnieR

07-24-2007, 09:04 PM

No one has mentioned decadron to me. What is the purpose? I was given a script for Compazine which I know is for nausea. Is that from the beginning?
It sounds as though, since my life is more active on weekends, that I would be better served having treatments earlier in the week....
Although are these aggrivations only during the first 6 treatments and then diminish when it is Herceptin solo??

Melinda

07-24-2007, 09:40 PM

I received decadron to prevent allergic reactions to the chemo drugs. before the Taxotere and carboplatin are administered the gave me aloxi decadron and benadryl. Maybe your ONC will give you something else, but the decadron is a steroid to prevent allergic reactions. Ask about it... I know it kept me up most of the night the first time. After that I used the ativan to put me to sleep. ON the night of treatment I needed two!
The whole process took about 41/2 hours for me. The first time they suggested that someone accompany me just in case the benadryl made me sleepy. It did for some of the time the drugs were being administed, however as soon as I was finished I was up and running again. After that I did not bring anyone with me.... to do what watch TV with me?
Take some snacks... I took jello, banana and yogurt, along with some crackers of some type and a magazine... I could never read much because of the roller coaster sleepy and wide awake feelings I went thru.
Melinda

harrie

07-24-2007, 11:09 PM

The decadron also prevent hand foot syndrome. I don't know if I was lucky, but I did not have a problem with nausea. They gave me antinausea meds as a premed just before the chemo and that was it. I didn't need to take afterwards at home at all. My premeds included benedryl for prevention of an allergic reaction also, plus Aloxi for nausea (I think).
Sleep....had a bit of a problem while on the decadron (day before, day of and day after tx)...but an over the counter sleep aid (Sominex) worked just fine for me.
I had the TCH every 3 wks and the herceptin weekly during chemo. So I was going in every wk.
After a while they knew I was not getting any reactions from the herceptin, so later we were able to discontinue all premeds for the herceptin only days.
Maryanne (harrie)
Oh yes...my hair is growing thicker and thicker, it feels like DAILy!

BonnieR

07-25-2007, 06:00 AM

Maryanne, what is hand foot syndrome? The "numbness" or tingling that was mentioned to me?
Yea about your hair! Is it the same or different that before?

BonnieR

07-25-2007, 06:23 PM

Okay, everyone, I am going to take the leap tomorrow morning. I talked to the ACS today and we reviewed my Adjuvant scores. And in general discussed the various pro and cons of the features of my pathology. They also suggested asking onc about Glutamine for the few days after treatment. And quinine water. The City of Hope doctor even phoned today to see what was going on and I told her my decision for chemo, in the face of the new findings. She agreed that searching for more opinions won't really help since I am in such a gray area. Nothing is obvious about it. Her major consideration was that I was satisfied with my decision. I think "resigned" is a better description!
So think good thoughts tomorrow morning!!!

tousled1

07-25-2007, 06:37 PM

Bonnie,

Sending you positive thoughts for tomorrow. Your oncologist was right in saying that you had to be happy with the decision you make. Remember you do have a say in your treatment plan. Stay informed. I'll keep you in my prayers.

Grace

07-25-2007, 09:45 PM

Hand/Foot is a tingling numbness in toes or fingers, from taxol I think. My two big toes have no feeling and some of the smaller ones are a bit numb, but not totally. It's nine months since chemo, so I don't think it will go away, but I don't think about it very often--minor side effect, for me at least.

My hair is growing in slowly because of herceptin, but is curly and thicker than before, so that's good news.

My center recommended L-Glutamine Powder while on chemo, and I used it faithfully. I think it helped. I'd say use it, as there have been studies that show it helps.

Good luck tomorrow.

BonnieR

07-25-2007, 10:03 PM

Is L-Glutamine from a health food store?

Thanks for the good wishes. I am scared. Took a whole Ativan this evening. Think I will take one in the morning unless it is contraindicted....

I told my husband I had not set aside enough time for prayer during all of this but he assured me my Higher Power was aware of the situation! Porbably from everyone else's prayers!

harrie

07-25-2007, 11:18 PM

Following admin of chemo, sml amts of drug leak out of very small blood vessels (capillaries) in the palms of your hand and soles of the feet. Exposre of hands and feet to heat or friction increases the amt of the drug in the capillaries and the amt of drug leakage. Results: redness, dry, peeling, or numbness or tingling sensations. Decadron will help to prevent this.
Maryanne

BonnieR

07-26-2007, 07:50 PM

First day of chemo is DONE! I am exhaused. Was in treatment area for 9 hours total! 6 of that was the infusions. They took each of them slowly at first which added to the time. I can expect 6 hours each time for the duration of the THC course and then less time for the Herceptin alone. Got the decadron and benedryl. Actually relaxed and slept through much of it! The Atavian I took must have helped too! So, all my frears of infusion reactions are laid to rest. Was bored and restless too, after the anxiety wore off. Will bring art supplies next time.
So thank you all for getting me over the first hurdle. Next is shopping for wig and prosthetics
I feel releived to have made a decision....Today is the first day of the rest of my life.....
Love you, Bonnie