How do you know if Herceptin is working??

[linn65]

I am ER+, HER2+++, PR-, several lumps with the biggest being over 5 cm. The doctor deciced he wanted me to do preadjuctive (sp) chemo therapy being TCH which I just finished on November 27th...THANK GOD!!

In the beginning he did bone scan, cat san, muga scan and MRI. Then when we finished another Muga scan, MRI, mammo, and ultrasound.

When for check up yesterday and he said now we will do surgery with no reconstruction for 6 months so by body can heal from chemo because blood is thick and we do not want to get blood clots and weakened body from chem. And after surgery I will have to do radiation for 6 weeks and 9 more months of herceptin.

But my question is how do they know the herceptin is working???? My tumor has not grown so that is good but it has not shrunk. So I am thinking HER2 is in your blood stream and therefore the herceptin for the year.

Then what happens??? I just don't know how you know if it is working......

['lizbeth]

Linn65,

Much research is being done on determining the effectiveness of cancer treatments.

However, currently, the medical industry relies on scans to determine progression of disease. I would describe your condition after neoadjuvant treatment as stable disease.

Other patients might have had a complete response or a partial response measured by shrinking tumors.

Standard treatment in any case would be surgery, Herceptin and in most cases - radiation.

You must go on faith that Herceptin is working. You did not experience progression during neoadjuvant treatment. This is very encouraging.

Surgery will get you to "NED" No evidence of disease. Radiation will give you further protection, as well as Herceptin.

I highly encourage you to exercise as much as possible, eat lots of fresh fruits and vegetables, and make sure you have a strong support group in friends, family and fellow cancer patients. Mindfulness and Meditation, Yoga, Therapeutic Massage all have shown effectiveness in preventing recurrence.

I know you are in a difficult phase of treatment. It is the not knowing that is incredibly painful and stressful. I can only share that I have been there and ask you to have faith and be open to the outcome that you will live healthy and cancer free for a long long life.

Also, I am a huge advocate of joining clinical trials. If the worst happens (disease progression) there are amazing clinical trials with TDM1, Perjeta and other therapies available. Not only can you help yourself, but you can help others in the future.

Better yet, in the case of no progression, you can join a vaccine trial within 3 to 6 months of completing Herceptin. I did the Walter Reed AE37/GP2 clinical trial. There are others such as the Mayo Clinic MUC1 vaccine trial (within 3 months of completing Herceptin).

You have finished a very tough phase of treatment, TCH. A mastectomy is rough but you will be surprised how quickly you heal. Grit your teeth and get through the radiation.

We are all here for you.

['lizbeth]

Linn65,

Oh I just noticed that you are ER+ which adds other treatment options. I'm ER- so I'm not as experienced with these treatments as other board members. Likely you will take Tamoxifen or some other medication.

[linn65]

I am very thankful the TCH chemo is over!!! I am planning on no side effects from just the Herceptin.

The doctor called and they scheduled surgery for Tuesday the 18th at 9:00. I am happy to get it over with but still nervous and afraid. But I know it is all out of my control.

After surgery they said I will be off 4 weeks then back to work. Then I wonder how long until radiation starts??

[Kellennea]

Hi Linn - For me, each phase of my treatment was 4 weeks apart. Surgery - 4 weeks later, port & chemo. 4 weeks later, radiation, 4 weeks later - started Tamoxifen.

[Lani]

The amount of cancer seen in the breast and the lymph nodes at the time of your surgery will be one way they tell if your treatment has worked--however, recent papers have shown that the absence of cancer seen at the time of surgery is less of a predictor of how you will do if your her2+ cancer is also ER+ than if it were also ER-/

That said, I have advocated previously for serial sampling of the bone marrow ie before and after treatment to see if disseminated cancer cells are there.
RESEARCHERS work seem to show that whether or not there are cells hiding out in the bone marrow after treatment has more to do with whether cancer returns than circulating tumor cells. Of course the former takes a marrow biopsy and the latter takes only a blood draw. Marrow biopsies are presently only done as part of clinical trials. I personally wish that would change, as I suspect there is a lot to discover earlier as to whether the treatments so far have worked and hopefully, changing/adding treatment if it has not will improve treatment results.

That said, you MIGHT be able to talk your doctor into a CTC test but there is only one FDA approved way to test and it may not be as accurate as other methods when all is said and done

Rest assured, at SABCS they repeatedly said her2+ breast cancer (early) has turned from one of the worst (with triple negative) to one of the best breast cancers to have. There are more and more and better drugs available and someday there may even be ways to detect a few residual cancer cells to tell if treatment did all they hope for (using supermagnetic iron nanoparticles fused or herceptin or herceptin affibodies) It is a work in progress and not all the "tricks" are available yet, but they are coming along much more quickly than in the past.

I am in no way qualified to give advice, being only well-read. I rarely voice opinions, except on my inability to understand why they don't look more at the bone marrow.

Best of luck

[mamacze]

Linn65,
You have already received great advice - I just want to chime in and remind you that you are in the midst of a physical, spiritual, and emotional tsunami. Hold on tight, the waters do calm down and as you read and research, you will feel more in control with your added knowledge. This is a great site for learning and feeling supported. Stay with us and keep us posted on how you do.
Love Kim from CT

[Pray]

Linn welcome to the site. We are all here for you. Please know I am praying for you and on the 18th I will be praying extra hard.

Gods blessings to you.

Peace my friend,

Nancy

[linn65]

I am two weeks as of Tuesday out of TCH chemo, and I am still tired and I feel so out of shape. If I walk too much distance my legs feel like they ran a mile. I feel so incredibly depressed and if I was not at work I would just sit and cry. I hate life right now, and I can not feel positive....

[Kellennea]

Hang in there, it gets better. Promise. I know it doesnt seem like it right now, but it will. I was the same way, I wanted hair NOW, I wanted to feel better NOW and I wanted the body aches to go away NOW. And it's totally okay to cry I still do sometimes.

[NanaJoni]

Linn - it is so okay to feel as you do. In addition to all the physical effects of Herceptin, when I was finished I had a real emotional low because it suddenly seemed like I wasn't fighting the cancer. You've already done so much and come so far - you still have a lot ahead of you but I hope each day you will find more strength. It's easy for me to say have patience when looking back a couple of years but it takes time to recover from chemo. If you don't feel any better in a few days you should think about talking to your doctor re the depression or a counselor or even a trusted friend or family member. I used all those for help when I needed it - people are very generous and kind so let them help you. And you can always talk to us here about anything. Sending thoughts and prayers to lift you up.

[linn65]

Before all this started I laughed and laughed a lot. Now, I think I cry more then I laugh. I know now why they say this is a FIGHT or a BATTLE when dealing with cancer. I had no idea before. But thank you so much for the positive responses.

['lizbeth]

Linn65,

You have had a devastating blow to your health and well being.

I'm not a professional expert on the grieving process, but crying is a natural part of the emotional healing process. I cried my patooty off.

Just focus on the present moment, one step at a time. Who is your support? Do you need to step it up to another level of support? Perhaps a trusted church pastor, a good friend who understands, or a cancer counselor. Someone you can see and touch and will help you emotionally deal with the devastation that a cancer diagnosis brings?

I thought my family and friends would be my support,but I discovered they were as shocked and devastated as I was. If we learn one thing from cancer - it is optimal to seek help when we need it.

We are here for you too. I will tell you after the shock wore off, patients who came in for the weekly group acupuncture treatments at Balboa were always good for a laugh.

Retired Admiral Fran went out and collected beer bottles and filled them will apple juice. We were all sitting around the oncology conference room drinking out of our beer bottles. She had the staff convinced we were having a party. Oh - we had such a laugh! We were constantly laughing about anything and everything.

[linn65]

What really bothers me is the chemo that was awful didn't seem to do anything. Now, surgery to cut off part of me, and then what are they going to say. When all this started, and I found the lump, I was told 80% are benign......Then I went to the doctor and it was test, test, test, 3 biopsies later and then chemo. I think they tested the heck out of me when it began now surgery, and I think don't they wander about the rest of me now??? It has been 4 months since they have tested the rest of my body. I am just supposed to, "Hope" herceptin is working. If I am not tired, if my legs don't feel tired, if my eyes are non-stop watering then it is going to the doctor. I rather be put in an induced coma and tell me when it is over. Now, it is Christmas time, and I just can't make myself happy. I feel like I have no control over anything in my life anymore.

[kvogler]

Are you scheduled to have another PET scan? I had 6 doses of chemo. I think on the 5th one, they did another PET scan and compared it to the first to see if it was working.

But I completely understand your mood. I'm right there like you at times. Some days are good when I get my mind off of it by reading a book or playing with my toddler.

If your emotions don't improve, talk with your doctor. I'm monitoring myself as well. I've read somewhere that breast cancer survivors often show signs of post-traumatic syndrome. If I find I can't have some positive days, then I'll ask for antidepressants if I must.

['lizbeth]

Linn65,

I remember how hopeless that first Christmas felt. And I feel as negative about the cancer treatment as you do.

I was told that when I asked about a memory seminar that resources couldn't be allocated to cancer patients - they were being used for more important things like soldiers with PTSD. I was thinking - I don't have post traumatic stress disorder, I had traumatic stress disorder TSD because I could be walking around with a ticking time bomb of metastasis in my body. I felt minimalized and invalidated. Even though I had empathy with wounded warriors, a little sympathy would have gone a long way.

Now I understand with Herceptin and the new treatments for Her2 breast cancer that for most of us cancer is not the death sentence it was before.

I am not saying it is a walk in the park, or there is not reason to be concerned about recurrence. I am saying that in the that heartbreaking condition you are currently in - that you might be suffering unnecessarily. You might be one of the majority that after finishing treatment will continue to live a long and healthy life with no evidence of the disease of cancer.

I really insist that you seek help with the emotional difficulty of cancer treatment. Gain control by getting help. Gain control by asking your oncologist about the schedule for PET scans, Muga scans, blood tests. Make a list about what upsets you. Take it to your doctor and discuss it. That is the doctor's job - you are paying them to take care of you.

I know you are hurting and I'm sending you a big hug from San Diego.

[linn65]

Thank you for the encouragement.... Today I don't have the energy to try and get tests. Now, next focus is surgery. I am simply broken and I can not even see past next week. I wonder how people do this. I always thought I have been a survivor or a fighter but now or today I feel defeat and wonder what is my purpose? I know I sound gloomy but I can't thing of a thing to feel better about.

[michka]

You are asking the right questions but you are too tired to think about it right. You really have time. I can assure you you will feel better and better soon and maybe you will not want to worry anymore. And don't forget that many women don't have a neoadjuvant treatment so they do not know if the chemo worked totally, partially or not at all. And most of them do well after.
I should have done what Lani suggested but it was 6 years ago and it is easy to say that after. At the time I was also very worried by the results of my first chemo and my onc decided to give me one year of Tykerb (it was quite new) after the year of Herceptin.
So it is a discussion you can have with your oncs but give yourself time and be easy on yourself. It IS tough to go through chemo. You ARE a strong Lady. Michka

[Jean]

Lani,
Do you have any updated information on bone marrow testing? When I was dx. I had tried to get into a trial
that was being done in NY and because my dr. was not
involved (another staff dr. was) I could not get into the trial. I also believe that the bone marrow testing would
be a great benefit. I have heard very little of the trails
and any results in these past years. I would have hoped that we would have seen more progress in this area.
If you have any information can you share?
Thank you.
Jean

[Lani]

One of many--just put DTC or disseminated tumor cells and prognostic and breast cancer into Entrez PUBMED

THis one just came out and is the largest study ever with long followup


Ann Surg Oncol. 2012 Dec 21. [Epub ahead of print]
Prognostic Value of Disseminated Tumor Cells in the Bone Marrow of Patients with Operable Primary Breast Cancer: A Long-term Follow-up Study.
Domschke C, Diel IJ, Englert S, Kalteisen S, Mayer L, Rom J, Heil J, Sohn C, Schuetz F.
Source
Breast Unit, University of Heidelberg, Heidelberg, Germany.
Abstract
BACKGROUND:
Detection of disseminated tumor cells (DTC) in primary breast cancer (BC) patients' bone marrow (BM) seems to be a surrogate marker of tumor spread and an independent prognostic factor for disease-free and overall survival.
METHODS:
Here we present the largest single-center cohort of patients (n = 1378) with the longest observation time (median 82.0 months). Immunocytochemical staining was performed using murine monoclonal antibody 2E11 with the avidin-biotin complex technique.
RESULTS:
At primary surgery, 49 % of patients showed MUC-1 positive cells inside their BM. Patients without BM DTC had significantly more often T1-tumors (P = 0.007) with less often affected axillary lymph nodes (P < 0.001). We observed a significantly higher incidence of distant metastases in DTC positive patients (P < 0.001). This leads to a reduced disease-free survival (P < 0.0001). Furthermore, in DTC positive patients there was a higher mortality rate and, accordingly, a reduced overall survival (P < 0.0001).
CONCLUSIONS:
Due to the presence of BM DTC, patients with a clinically poorer outcome can be identified at primary surgery. We therefore suggest that DTC analysis can be used as a prognostic factor and monitoring tool in clinical trials. Future study concepts relating to DTC should aim at identification of BC patients who may profit from adjuvant systemic therapy.
PMID: 23263703 [PubMed - as supplied by publisher]
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