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Old 06-05-2007, 09:17 AM   #1
diannel
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I need advice on chemo treatment

Hi All:
I joined last night.
I am 59. Right breast lumpectomy: IDC removed 7/29/04. 1 cm. ER+ 60% and PR+30%. HER 2 neg by FISH. Node negative. Radiationx33. On Arimidex since Nov. 04.
NOW left breast lumpectomy: IDC removed 5/24/07 2 cm. Er+70% PR neg. Her2 positive: FISH signal ratio 6.49. Node negative. They say it is a new primary tumor.
I also have a 2.2 cm tumor on my R kidney. I was supposed to have surgery today, but developed bronchitis with a nasty cough, surgery is post-poned to early July; they say that is a new primary tumor too. I asked them to go back to a 2004 CT scan, and it was there then, supposed to be a slow-grower, only .3 to.4 mm a year.
Ater I get the kidney surgery, at which time they are just removing the tumor and 1 mm margins, my oncologist wants to start me on either:
1. AC 4@ 3 wk intervals. then TH 3@1 wk intervals. then H for 9 months for a total of 15 months treatment. OR
2. TCH 6@ 3 wk intervals. then H for 34 weeks, I don't know at what intervals, for a total of 12 months treatment.
My questions are: (Please give me your reasons in your answer)
1. Which chemo should I have?
2. Is it going to be hard for my kidney to heal if I start chemo 2-3 weeks after surgery?
3. Is there some gene assay test out there to determine if my HER2 is going to respond to this therapy?
4. Should I get the Oncotype DX assay? (I think it gives you a recurrence score, but only based on Er status, not Her2 status.)
5. Am I waiting too long to start chemo if I start it the third or fourth week of July? Should I start chemo before kidney surgery?
6. Has anyone had anything similar like this?
I would really appreciate any advice.
Thanks,
Dianne L
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Old 06-05-2007, 10:42 AM   #2
julierene
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Being HER2 positive, I would want the 2nd treatment. I have had both treatments, and the TCH was much more tolerable, did a super job, and I didn't loose my hair on that one. But that is just me.
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Jan04: Bilateral Mastectomy at age 28
Initial DX: Left Breast: IDC 2cm, Grade 3, HER2+3, 0 Nodes +, ER/PR-. Right Breast: Extensive DCIS ER-/PR+; Stage 1-2a
Feb04-Apr04: 4 AC, dose dense
Aug 04: 4 Taxotere
Dec 05: Bone and Liver METS; Stage 4. Carboplatin/Taxol/Herceptin. DX with Li-Fraumeni Syndrome
Apr 06: NED, maintenance Herceptin
Apr 07: CA1503=14; masses in liver; Xeloda/Tykerb
Nov 07: NED, Tykerb maintenance
Sept 08: Liver mets again, on Tykerb/Xeloda again, CA=19 and 27
Nov 08: Progression, Tykerb/Gemzar, CA=25
Dec 08: Progression, Herceptin/Navelbine, CA=40, 57, and 130
Jan 09: Progression in bone, recession in liver, Herceptin/Carbo/Abraxane CA=135
June 09: CA27/29=24, chemo break
Sept 09: Progression, CA=24, waiting on clinical trial (4 weeks no treatment)
Nov 09: now have brain mets, trial "on hold", getting 14 WBR treatments starting 11/2/09
Dec 09: possible start on p53 trial
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Old 06-05-2007, 11:11 AM   #3
Erin
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I am doing option #2 now. If you google UCLA, Jonsson Cancer Center (sp), and Herceptin you will probably find the study that was recently completed at UCLA which rates the TCH just as effective as the AC, with less chance for cardio toxicity. You may be able to find the old thread on this site as well. Best of luck with all your decisions, there are many, but the women on this site will be a great source of info for you.
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Age 50, premenopausal
Dx 1/2/07 DCIS/IDC
Lumpectomy 1/4/07 1.1cm tumor
SNB 3 nodes clear
Stage 1, Grade 2, HER2+++ (FISH 6.8)
ER + / PR +
TCH, 6 rounds, finished 6/1/07!!!
Herceptin to continue for 1 year
36 rads finished 8/22/07
Port out 8/27/07
Switched to Herceptin weekly for joint pain
Ooph 11/13/07
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Old 06-05-2007, 02:24 PM   #4
MJo
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Hang in there.

Oncotype -- If your insurance doesn't cover the Oncotype, you will have a bill for about $3400. Her2 is one of the things the Oncotype takes into account, according to my Onc, which is why Her2+ Oncotype scores are usually high. The last time I looked at the Johns Hopkins Ask an Expert site (if you haven't checked it out, take a look) they werent recommending the Oncotype for Her2 positives because they felt scores for majority of Her2s would show high risk anyway.

I took the AC in 2006 and had a bad time. Possibly, AC contributed to my having to stop Herceptin after 9 months due to cardio problems. If the Johnson Study says TCH is just as effective, I know which one I would choose.

I finished my treatment, except for arimidex, so I haven't been paying attention to discussion about new tests. But I know some women on this site are very knowlegable. They likely will respond to your questions

I don't know if your kidney is at risk during chemo due to surgery. I think your doctors need to reassure you about this. You could also try talking to the nurses. Should you start chemo before kidney surgery? I think doctors don't like to do surgery on chemo patients due to blood thinning issues. But again, your doctors need to explain this.

Are you waiting too long? I think two months is pushing the limits, but a friend of mine waited 7 weeks to start chemo after lumpectomy because she didn't want chemo during Christmas and New Year holidays. Oncologist didn't seem worried. Her BC profile was similar to yours. Plus you have to think about your whole body due to bronchitis and kidney issues.

All the very best to you. The next few months won't be a picnic, but I look forward to hearing good things from you in the future.
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MJO

IDC, Stage I, Grade 2
Oncotype DX Score 32
Her2++ E+P+, Node Neg.
Lumpectomy 11/04/05 Clear Margins
3 Dose dense AC (Couldn't tolerate 4)
4 Dose dense Taxol & Herc. (Tolerated well)
36 weeks Herceptin (Could not complete one year due to decrease in MUGA score)
2 years of Arimidex, then three years of Femara
Finished Femara May 2011
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Old 06-05-2007, 03:35 PM   #5
Lala
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Dianne
Sorry to hear about your surgery. Ask your Urologist about the roll of chemotherapy after surgery. I would recover first then worry about doing chemotherapy later.

As far as your choice in 2 different lines of chemotherapy;
I would do the TCH as it is shown to be safer than AC. There is much information out there on the TCH combination. The Adriamycin is more cardio toxic than other chemotherapys. I have posted some web links for you to see the role of these drugs. Also a link about the Topo II test; this is a test where you send off tumor to see if it would respond to Adriamycin.

Here is a web link that show TCH outperformed AC and TH.
http://www.oncology-times.com/pt/re/...856145!8091!-1

Here is web link to an article that talks about the test called TOPO II
If you have TOPO II amplification you are likely to respond to Adriamycin.
http://www.aaci-cancer.org/n_detail....pid=39&sid=200

I wish you the best of Luck.
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Lala
DX Fall05 Stage 4 er+ pr+ her2+ liver and bone mets
DX Fall06 Brain mets, Brain mets gone Spring 2007
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Old 06-05-2007, 04:11 PM   #6
chrisy
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Wow, you are quite a veteran. I can tell you're a fighter!

I'll give you my 2 cents (which is worth probably way less than that!) but, maybe could you clarify something for me. You say they are calling the kidney tumor a new primary? So is it a kidney cancer not a metastasis from the breast cancer? That may impact the treatment decisions if you are trying to do adjuvant chemo for a kidney lesion - although many of the treatments for renal cell cancers are the same as for bc.

I agree with what the others have said re the A/C and the cardiac toxicity. The risk of this with Herceptin after A/C is higher than if you did not have the A/C. And not to throw yet another wrinkle in, but have you considered T/H weekly instead of every 3 weeks? This uses a lower dose, and is supposed to be better tolerated and just as effective.

It sounds like you would also consider continuing the hormonal treatment, if this is a new primary and still er+
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Chris in Scotts Valley
June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial

5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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Old 06-05-2007, 05:40 PM   #7
diannel
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Hi Chrisy:

Thanks for the response. Yes, they are saying the kidney tumor is a new primary, and that it has been there at least since 2004, but I guess I will know for sure when the pathology comes back on it, after surgery.
My oncologist said he might switch me to Tamoxifen, since the Arimidex didn't seem to work. This new breast tumor was 70% ER positve, PR neg. and Her 2 positive. Whereas the one from three years ago on the other breast was 60% ER positive and 30% PR positive and Her 2 negative.
Thanks,
Dianne L
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Old 06-05-2007, 05:48 PM   #8
diannel
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Hi Lala:

Thanks so much for the two articles. It still sounds like reduction for risk of recurrence is better by 12% for the Adriamycin group. I guess I have to find out if I am Topo II positive. Does anyone know anything about the test or where to get it?
Thanks,
DianneL
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Old 06-05-2007, 08:08 PM   #9
Lala
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Wink

Dianne
I am confused as to where the 12% recurrence rate is stated in which article?

I just looked at the article
Breast Cancer: Non-Anthracycline Regimens Superior for Early Her2 Positive Disease once again.

It states that
Both of the trastuzumab-containing regimens significantly improved disease-free survival compared with the non-trastuzumab-containing regimens; at four years, 92% of patients on ACTH and 91% of patients on TCH were still alive compared with 86% in the AC→T arm.

TCH outperformed AC→T and AC→TH in the treatment of breast cancer, Dr. Slamon said.

TCH had the optimal therapeutic index, thus avoiding the cardiac damage related to sequential use of anthracyclines and trastuzumab.

The best outcome for early-stage HER2-positive breast cancer is obtained with a non-anthracycline regimen [TCH], and results of this trial should impact the way early-stage breast cancer is treated. TCH should be the preferred option in HER2-positive early breast cancer. He questioned whether there is still a role for anthracyclines in the treatment of early breast cancer.

Because Anthracyclines are cardio toxic there is a higher risk for those who take herceptin.

I still think TCH is the better combination overall.
Also in regards to tamoxifen I tried it but found it did not work for me. I was told that Fasoldex would be better as there are studies showing it works in mets. I too am pre meno so I would have to use this with a Lupron shot. Maybe you should ask your oncologist for the studies showing tamoxifen vs fasoldex. It takes 3 months for hormone drugs to show response vs chemotherapy that takes 2 months. There are so many treatment options available.

I wish you the best.
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DX Fall05 Stage 4 er+ pr+ her2+ liver and bone mets
DX Fall06 Brain mets, Brain mets gone Spring 2007
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Old 06-05-2007, 08:59 PM   #10
Jean
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Dear Dianne,

Welcome to our site and I am sorry that you are in need to join us.
But here you are - and you have the best place to gain support
and knowledge.

First of all let me explain about the TOPO 11 test...I had the test done.
If you are going to have TCH...(which by the way is what I had)
you will not need to bother with the TOPO 11...this test is important if you
are going to have A/C...it has shown that patients that are TOPO 11 positive
the A/C treatment will work well...if negative not so good....If you are not
going to have the A/C it does not matter about the TOPO 11. This test is
done by a sample of your tumor sent out to a lab. The lab I used was out
in Calif. with Dr. Slamon. It was covered by my insurance and was not
expensive about $250.00.

Next: You will be wasting your time and money on the Oncotype DX test
since that would be for a patient who is boarder line on chemo treatment,
for instance a small tumor under 1cm and less...
and your tumor is 2cm which means a ticket to chemo. So save your money on this test which is $3,000.00 and your insurance may not cover it.

A little confused about your kidney tumor. You mention that it has been there as a slow growing tumor since 04...does the dr. think this is not
cancer? I am wondering if the tumor on the kidney is not a threat would
the dr. consider treatment for the bc a priority? Since you had a lumpectomy
I am also assuming you will be having radiation treatment? Have to figure in
time line for that treatment also.

It is impossible to advise on the schedule of events...but if the tumor on the kidney is not a health threat - I would want the bc treatment started.
TCH is the preferred treatment these days. It eliminates most of the risk
of heart damage and is very doable. I did loose my hair on the TCH
and most of the gals on the site that did TCH lost their hair. But I don't think
that is important either way...we all look beautiful with or without our hair.

Everyone on the site is extremely helpful and you will gain much knowledge
as you begin to make decsions. I think the hardest part is getting the answers to all the questions, so many decisions. Just make careful decisions
but I think you will discover here that the TCH is the better choice.

If I can be of any help - just reach out....
Wishing you all the best and please let us know more about the kidney tumor.
Regards,
Jean
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Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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Old 06-05-2007, 10:13 PM   #11
Jean
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http://www.breastcancer.org/research...in_012606.html

Diane,
Please read this link...I think you may have mis-read the part about %...
it was not 12%...but 1.2% (1 point .2)%

Jean
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Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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Old 06-05-2007, 10:31 PM   #12
diannel
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Hi Lala and Jean:

Lala: I was looking at the interium 23 month study which gave the ACTH arm 51 % reduction in risk and the TCH 39% reduction in risk of recurrence. That is a 12% difference. But now the 36 month results are out and you are right, it is 91 and 92% still alive. (Does still alive mean no recurrence, I wonder?)
Jean: I was thinking the same thing about the kidney tumor, since it is slow growing and not much of a threat, let's get all the breast treatment out of the way, then go after the kidney. But my husband and I sat down with the oncologist, and also talked with the urologist, and neither of those guys think it would be prudent to wait six months to get the kidney tumor out. Then I got bronchitis and couldn't keep my surgery date with the urologist for today.
I also failed to mention that we have a big family vacation plannned and paid for (No refunds) the last week of June, with all four daughters and husbands and two grandbabies who will attend. So the urologist is willing to wait to remove the tumor. My breast surgeon was against my having a chemo treatment and then my going out of town, and I didn't especially want to go on the vacation under the effects of the first chemo treatment. So everyone is holding off until the first week of July when I return to Houston. The way it stands now, I will get the kidney tumor removed, wait two or three weeks, and then "hit me with the chemo." Then radiation after the TCH, if I choose that regimen. I want the chemo that is going allow me into old age.
As for the TOPO II test, from what I read in the 1/27/06 article in AACI news, which is a year old, about Herceptin, etc...."TOPO II is more likely to respond to Adriamycin" so I conclude, if you've got TOPO II you'd be better off taking Adriamycin.
Also, something else I would like to know: There are about four different types of Her2 amplifications that they know about so far. Wouldn't it be better to find out which one you have, and how it responds to the different chemo regimens? But I guess there's no test like that for sale yet.
Signing off for now, I haven't quite got my quote thought up yet,
DianneL
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Old 06-06-2007, 08:48 PM   #13
Bev
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Hi.

1. Did AC, but I'm not sure what is best. Maybe get a few more opinions.

2. I don't know about kidneys, but as you have 2, I would be thinking about getting that one out.

3. I think the fish test is telling you that you have roughly a 50% chance of responding to Herceptin.

4. I have read that most oncotypes for HER 2 + will come back as high risk. It seems to be most helpful for stage 1.

5. Somewhere there is a definitive study as to optimal times for treatments. If you search, you may find it. The Docs like 3 to 5 weeks, but I think people fared well up to 8 weeks. This would be worth looking for.

If you're like a lot of us, you could probably do treatment a week before vacation and be OK. But it looks like if you deferred treatment. you wouldn't be further out than 6 weeks which I think might be OK.

So keep asking questions. Good luck and enjoy your vacation. Bev
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Old 06-06-2007, 09:15 PM   #14
Patricia
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Hi Dianne,

I had 2 primaries at the same time (breast and thyroid) and had my surgeries about 6 weeks apart. I did not start my chemo for another 3 weeks as the dr's wanted the time to allow my body to recover from the surgeries. The way my dr's decided was that they felt it was better to get the cancers out and take the risk of starting the chemo a little later as a result. It was something that I personally was nervous about. I was very happy once I started the chemo because it was beyond the amount of time that in general they recommend waiting. They did start me on Lupron (which I am still on until I have an oopherectomy) before chemo though to at least get my hormones shut down asap. I can't speak to your specific situation, but I think it is important to weigh the risk of which is worse to delay.

In terms of your drug options, I don't feel educated enough to advise you. I did have the 1st option AC x4DD then 11 T&H followed by 9 mos of Herceptin. I had a very hard time with the AC&T due to side effects.

I was told by my onc that there was no need to do the oncotype since I was Her2+ (100%).

Welcome to the board, this is a wonderful site with the most educated caring women. I am sure that others will have words of advice for you.

Hugs,
Patricia
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age 37 @ dx 7/21/05: IDC 1.5cm, grade III, Stage 1c, ER /PR+, HER2+,
7/29/05: Partial Mastectomy
dx 8/15/05: Papillary Thyroid Cancer
9/15/05: Total Thyroidectomy
A/C X 4 DD, 11 weekly Taxol + Herceptin, + 9 mos Herceptin Alone, 36x Rads, Lupron, Aromasin
7/29/07: 2 years NED :)
8/6/07 Oopherectomy (Lupron no more! :-)
Aromasin & Estring plus Synthroid and supplements
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