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Old 02-21-2012, 01:36 PM   #1
Nana2three
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Herceptin as monotherapy - no chemo

I am starting a new thread and although I see some mention taking only herceptin, it is hard to tell if this is the first and only treatment you've had.

Dx. Jan. 2012 IDC .8cm tumor, Stage 1, Grade 3, ER, PR, and Her2 postive No lymph node involvment
Masectomy - right breast

I am 70 and have MS. MS is basically stable and mostly have balance, tingling, numbness, and invisible symptoms.

After seeing 3 oncologists they have agreed TCH would be best but the MS would be aggravated by the chemo. So the agreement was Herceptin alone and Arimidex for 5 years. I had my first treatment yesterday. The infusion was uneventful. 1 hr. later I started with 100 degree temp, chills, and felt like I had a bad case of flu. Took 2 tylenol and slept thru the night. Today I am fine except my walking is stiff and eyesight not as clear. The chills and fever lasted approximately 5 hrs.

I am scheduled for herceptin on a 21 day cycle. I'm feeling positive that this is the best plan for me. I really am interested in hearing info from others than did not do the chemo and did herceptin work for you. There is a clinical trial ongoing in Japan with just herceptin and women over 70. No data is in yet but it started in 2009 and will run until 2014.

Blessings to all of you and will offer support anyway I can. I feel this is the best decision for me and don't want to second guess myself but the questions still swirl around in my head.
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Old 02-22-2012, 02:20 PM   #2
Nana2three
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Re: Herceptin as monotherapy - no chemo

Day 3 after herceptin infusion. Leg muscles feel stiff but no side effects that cause a problem. For those of you on herceptin - Did you go 21 days between treatments or go every week. What is the rationale behind the time schedule.
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Old 02-22-2012, 04:16 PM   #3
NanaJoni
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Re: Herceptin as monotherapy - no chemo

Nana (I'm a Nana, too) - I did Herceptin every week while I was doing TCH. It was TCH every third week with the Herceptin the two weeks in between. After I stopped the TCH, I went to Herceptin every three weeks for most of the next year. This seems to be a standard protocol for many.
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3/12/10: mammogram/ultrasnd/biopsy-invasive bc & DCIS; 2 tumors (2cm er-/pr-/HER2-& 1.8 cm er-/pr-/HER2+); grade 3;poorly differentiated
3/24/10:sent.node biopsy clear
3/31/10:bi-lateral mx.;atypical ductal hyperplasia-lft side
4/21/10:wound revision-infection/scarring 4/28/10:seromas both sides
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07/2010: 2 weeks after 3rd port surgery, threw 3 pulm. emboli-IVC filter installed; warfarin
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12/03/2010 - finished 33 rads Hooray!! cont. Herc. every 3 wks
4/2011 - pneumonia ??? Nope-radiation pneumonitis. No more Herc.
5/2011 - NED!!! port out.
8/2011 - clean PET & CT scans.Still NED
7/2012 - Still NED/very blessed.
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Old 02-22-2012, 09:52 PM   #4
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Re: Herceptin as monotherapy - no chemo

Nana2three,

When the MUGA score showed decline after I had completed 18 weeks of TCH in 2007, I was given the Herceptin weekly instead of every three weeks. My understanding is that with a lower weekly dose, the potential of further heart damage is reduced.

I have a congenital problem called 'Mitral Valve prolapse', so there's not much I could do to improve my heart function. Several members have reported both daily exercise and certain supplements (enalapril?) helped them finish the one year Herceptin.

Evebarry also has just begun her treatment with Herceptin as monotherapy. She looks very young in her picture, but she is closer to your age group than mine. Perhaps y'al can compare notes during treatment? (I think she's also getting it every 3 weeks.)
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Old 03-25-2012, 08:17 PM   #5
kklee
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Re: Herceptin as monotherapy - no chemo

Hi NanaThree,

In 2010-11, I did Herceptin alone for 17 doses, every 3 weeks, no chemo; 5 years of hormone treatment with 1.5yrs past. In the middle of treatment, say 10 doses, my heart is weakened but still adequate for normal activities, like walking but not jogging. My nails thinned and still peel off from time to time now. I also started my morning moderate stretching/walking exercise to help my heart.

Wish you do well in your therapy. My onlogist said that Herceptin functions while doing least harm, though it's not a Standard 1st line treatment yet.

Relax and resume normal life.
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Old 03-26-2012, 06:09 AM   #6
Nana2three
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Re: Herceptin as monotherapy - no chemo

Thanks kklee. I've had 2 herceptin infusions. No chemo and haven't started the arimidex yet. So far no problems other than aggravated MS symptoms since they stopped all MS meds since they do not know if they can be taken with herceptin. No data available on interactions. Blessings to you.
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Old 04-07-2012, 09:41 PM   #7
Lani
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Re: Herceptin as monotherapy - no chemo

Interestingly, herceptin has been found to help remyelinization in leprosy (yes, leprosy!)

I would be curious to know if your MS improved if you took herceptin monotherapy (ie, without cytotoxic chemotherapy, many of which are neurotoxic)

Can anyone else chime in?
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Old 04-22-2012, 09:25 PM   #8
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Re: Herceptin as monotherapy - no chemo

curious also to discover how your MS does on the arimidex

Estrogen (as well as progesterone) are reportedly very important in the central nervous system. MS reported improves during pregnancy (more hormones) so am curious if depriving your CNS of estrogen will affect your MS.

Sorry to sound so scientific and unfeeling (scaring you that this may be the effect), but hoped you could be alert and report back so we could hopefully assure others who might take the same treatment whether it agreed with you.
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Old 04-26-2013, 09:53 AM   #9
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Re: Herceptin as monotherapy - no chemo

I am not sure if anyone is still following this thread....
I was diagnosed with a recurrence of what they thought was DCIS and had a bilateral mastectomy in January. Complications after reconstruction....staph infection...etc. Long story short, It was discovered that there was a small area .5cm of invasive HER2 positive (ER/PR +). Of course I was relieved to have this out of my, but worried in reading about the HER2+. My lymph nodes were negative (had surgery last week) and I am scheduled to meet with oncologist to start Herceptin next week. She is not recommending that I undergo chemo with this due to the size of the invasive cancer. While relieved to not have to go through chemo, I am a little worried about whether we are doing what we can to prevent this from returning! I am 43. Thanks for the information on the effects of Herceptin.

Laurie
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Old 04-28-2013, 06:38 PM   #10
kklee
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Re: Herceptin as monotherapy - no chemo

Hi Laurie, I think you can just listen to your oncologist and follows her instruction. Different Oncologists have different opinions and if you are not comfortable, maybe you can ask for a 2nd opinion. I remember my oncologist says that HERCEPTIN is targeted at HER2. I was at 45 when I was diagnoised with 2 lumps, total 0.9cm, lymph nodes -ve.

During my therapy, not much adverse effect and I was basically living my normal life. Though a little bit tired and minor heart problem.

Wish you well during the therapy. Relax and trust your doctor.
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Old 05-07-2013, 09:30 AM   #11
frankp
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Re: Herceptin as monotherapy - no chemo

Laurie--you should review the information at www.hertestonline.com and review it with your oncologist. This is about monitoring HER2 treatment with a blood test. Not widely used, but recent journal articles are very convincing. Seeing a fall in your blood levels with Herceptin treatment is medically important and reassuring!
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Old 05-07-2013, 01:48 PM   #12
'lizbeth
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Re: Herceptin as monotherapy - no chemo

Laurie and Frank,

I would think Laurie would have a tough time getting approved for a serum Her2 test at her early stage of breast cancer. Most doctors balk at off label tests and treatments that are not approved standard of care. Metastic breast cancer patients however would be more likely to use this test.

I did note that Laurie, you are ER+. This opens you up to more testing to show the aggressiveness of your cancer.

MammaPrint, the first assay to be cleared at the 510(k) level by the US FDA's new in vitro diagnostic multivariate index assay classification, is offered as a prognostic test for women under the age of 61 years with either estrogen receptor-positive or -negative, lymph node-negative breast cancer. Unlike the Oncotype DX assay (Genomic Health, CA, USA), this test requires freshly prepared tissues collected into an RNA preservative solution. The 70 genes that comprise the MammaPrint assay are focused primarily on proliferation with additional genes associated with invasion, metastasis, stromal integrity and angiogenesis.

That was from a PubMed article. There is also another test for ER+.

Personally I would have preferred to do only Herceptin. I had a few positive nodes and was 44 at the time of diagnosis. So I had to add a Taxane to my treatment.

You can get more information from Mammaprint on the genetics of your tumor and more precise information on how aggressive it is.

If you add chemotherapy, and you do paclictaxel there have been a couple studies that show it is much more effective given weekly than every 3 weeks.

Also, Lani, our unofficial Her2 Support "information officer" recently posted information that 90 percent of breast cancer patients who receive Herceptin will be disease free at 5 years. This information came from a study in China.

Only a 10% chance overall of having a recurrence in 5 years with Herceptin. That is actually really fantastic news. And within the next 5 years more treatments will become available and those statistics will improve again.

However, if you'd like to join a clinical trial for one of the cancer vaccines after Herceptin you will have an even greater reduction in the chance of recurrence.

You will do great. Don't worry unnecessarily.
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Old 05-07-2013, 02:58 PM   #13
frankp
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Re: Herceptin as monotherapy - no chemo

More about serum HER2: the test has a CPT code and is reimbursed in our community. The test is listed in most hospital lab directories. There are no serum test guidelines--orginally, when Herceptin was used only in progressive disease, the serum recommendation followed. But now Herceptin is often used much earlier. Furthermore, it only costs $100-160. $210 direct-to-patient at hertestonline. This advice may come a little late for Laurie, since when Herceptin is working, the serum HER2 falls very quickly. Nevertheless, even now it would establish a baseline that could be revisited at a later date. You should retrieve and read a paper by RB Peterson (Clin Chem Lab Medicine, February, 2013). Seems like any patient or doctor (most are unaware of this journal) reading this article would chose to monitor.
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Old 05-07-2013, 04:14 PM   #14
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Re: Herceptin as monotherapy - no chemo

Thank you all for your comments. I am such a newbie to all of the terms/codes/stages of my breast cancer, but I am learning! My first diagnosis was DCIS two years ago. I thought my fight with cancer was in the background...little did I know it would return.
I received my first dosing of Herceptin this morning and so far so good. I will get blood tests regularly to monitor... and echo cardiograms every three months. I do trust my doctors and feel blessed to be in the HUB of cancer centers in Houston where the doctors collaborate and share findings/studies, etc.
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Old 05-08-2013, 03:46 AM   #15
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Re: Herceptin as monotherapy - no chemo

Excellent, Laurie!! Looks like you're in great hands. Are you at MD Anderson? Will your blood test monitor be CA 15-3, CEA, sHER2/neu or all three? Just curious.
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