Herceptin

[MarilliM]

Hi - I am caregiver for my husband. The Oncologist wants him to try Herceptin on a weekly basis, lower doses. Has anyone done this and did you have any side effects. Also, was it effective. Thank you.

[ExpectAMiracle]

Hello and welcome! You will find a wealth of love, support and information here. I am a relative "newbie" myself.

I took Herceptin on a weekly basis for 12 weeks while I was getting other chemo (Taxotere and Cytoxan) and am now going on it every 3 weeks for the next 9 months (other chemo is done). I had few side effects from the Herceptin that I could distinguish. The main one I have had was a runny nose that was sometimes a little bloody and waking up with "crusties" in my nose. It isn't bad at all.

As far as effectiveness, for me it is too soon to tell, but many others here are having great success with it. Hopefully and prayerfully, your husband will do well on it also.

[Jean]

With the weekly treatment side effects maybe milder. Headaches are common and muscle cramps esp. in the legs. It is not severe and doeable. Sending prayers your way.

Jean

[chrisy]

Hello,

You didn't mention what stage your husband is, or if the recommendation is for Herceptin as a single agent as adjuvant treatment for early stage or in conjunction with chemo. If you could share a little more info people may be able to be more helpful.

The "normal" schedule for Herceptin was originally weekly, later studies showed that the 3-week dose and schedule was as effective and many prefer this because it's easier to have a normal life between treatments.

I had herceptin weekly WITH taxol and carboplatin, then went on the 3 week schedule. What side effects I had I really attribute to the chemo rather than the Herceptin. I do know that once I finished the chemo and was on Herceptin alone, I felt much better!

In terms of effectiveness, I had a complete response to the T/C/H and then the Herceptin kept me in remission for another 2 years. So it is good stuff!

Everyone responds differently, but for me the T/C/H

[Lani]

In all likelihood more than Genentech could provide you with!:
http://her2support.org/vbulletin/showthread.php?t=23696

[Believe51]

Sweetheart, could you write a bit more to us so I can know your story better?....Believe51....(Marie G)

[MarilliM]

Hi - My name is Idi and somebody might know me from another board. My husband's story is different. He had a liver transplant and ended up with breast cancer, 11 positive nodes. Since he has a suppressed immune system, he has never had chemo for this could be fatal to him. He can not take anything to boost his immune system for his liver would reject, it has to stay suppressed. At first there was no metastisis, after his mastectomy, two months later it went to his bones, just recently it showed up in his lung. He is Stage IV. It has been 5 1/2 years and he has had all the hormonal drugs there are. He is ER/PR+ and HER2+++. So far he has had radiation. Now, we have run out of options. This has been discussed with several Oncologists and chemo is out, so they said if he wanted to try Herceptin on a weekly basis this would be his only option, however, still taking a chance with heart failure. However, he has had a low ejection fraction of 37 at one time and the last one was 57. They say once it has been that low that is not good, before he would do this he would have another MUGA test. I have asked so many questions and I really don't know why because he just doesn't fall into the same category as others. I found one person in New Zealand who had a liver transplant and got breast cancer. She had chemo and she died. I keep hoping but I think I am wasting everybody's time trying to find answers. He has never had symptoms from his cancer. So if he does nothing, the Oncologist said he could live up to 2 years but no one knows this for sure. Right now he is doing nothing. He feels fine and I'd hate for him to die from treatment and shorten his life. His main Oncologist said to call him in a few days, he is trying to come up with a non conventional treatment for him(whatever that means). I've tried posting on a transplant forum hoping to find someone with any kind of transplant that might have ended up with any kind of cancer (of course I don't wish this on anyone) but I had no responses. I want to thank you ladies - Sorry my story is long Thank you all again. Idi

[StephN]

The poor man and what a trooper of a wife you are!
First the liver is failing and now cancer that is advancing.

My mets were raging in my liver and I took Herceptin weekly as part of that treatment which has been successful for me. Been on the 3-week dose for 4 years now. I am hormone neg.

I want to bring up the idea of further targeted treatments, such as Avastin with Herceptin.

Also, wondered if the new tumors have been biopsied and checked to see if they are still hormone positive. New tumors can change pathology from the original ones and this is one reason that treatments eventually fail.

I believe there are some other non-chemo treatments that may be tried. A number of trials for new drugs are up and running.

Let us know how it goes. Difficult to imagine him without ANY treatment, especially if he is HER2 positive. Hope the appt is not too far off.

Does your husband do any supplements or complementry therapies?

[Lani]

Dr. Charles Vogel published a paper on the use of herceptin monotherapy for Stage IV years ago. Since that time there have been trials of Herceptin plus antihormonals for Stage IV and Herceptin plus Avastin for Stage IV. I think there may be a trial of Herceptin plus Tykerb for stage IV.

Some think that Herceptin works via ADCC (a function of the immune system), others think it works in several ways including some which may not involve the immune system so directly.

Dr. Javier Menendez out of Northwestern University has been trying to mimic the effects of herceptin on her2+ breast cancer, or at least add to them, with oleic acid (olive oil), and inhibitors of FAS(fatty acid synthesis).

Has your husband tried fulvestrant (faslodex). I belive there is a trial of faslodex and tykerb.

Since tykerb has been used on so few people, they are not as knowledgeable regarding its possible effects on someone with a liver transplant, but
because it is a small molecule rather than a monoclonal antibody, its mechanism of action may involve the immune system less.

I forgot to look for a profile to see where you live. At Stanford and other hospitals which have been doing organ transplants for a long time and in large numbers of people, they may have more experience with what medications/treatments transplant patients can and cannot tolerate and what might be most effective.

Let us know where you are so we can think about what resources there might be...Hope some of this helped!

[nitewind]

I've been on weekly herceptin for about 6 monthes now, I should be finished in December. I've really had no side effects. I started out getting it once every three weeks but it seems I didn't feel well most of the time. Nauseated, blurred vision and just all in all, not good. But, like I said, since I've been taking it every week, I haven't had any problems.
Good luck to you and your husband.
Susan

[MarilliM]

Hi - My husband has tried all hormonal treatments. His only chance is Herceptin on a weekly basis. However, we are still concerned about his heart for at one time he had a low ejection fraction of 37. It is higher now, but the Oncologist said once it was low it is not a good idea. The only supplements we do is juicing carrots, broccoli, beets, apples, drink grape juice and a few things like that. He doesn't know whether to take the chance of heart failure with Herceptin and shorten his life from treatment or continue on with nothing since he feels fine. It is a very hard decision. Thank you for asking. Idi

[MarilliM]

To Lani - I'm not real familiar how to post for each person. However, he has had faslodex and all the others, not just once but several times with mixing different hormonal drugs. Tykerb is too new of a drug and do not want to take a chance with that. My understanding is that Herceptin does not affect the immune system, (lower blood counts) only the problem with the heart. So this is a big concern whether or not to take this chance. We live in Florida. Had his liver transplant in New Orleans, LA, however, they are not very helpful since they say cancer isn't their field. I think they should be working with the Oncologist but this is not happening. All they said his liver is great and could withstand any type of chemo, but are very concerned about the immune system. I think this is just a battle we can't win. Really are confused at this point. Thank you for all the info. Idi

[Lani]

but whether it needed an intact immune system to work. The verdict is not out on that, but it seems to have a number of potential mechanisms of action, some of which require an intact immune system and others which do not. (plus the immune system has many subcategories and not all may be affected equally by the anti-rejection drugs)

My other point, was that anti-hormonals work better when given WITH antiher2 treatment as the ER is pathway which is upregulated when you block her2 and vice versa.

Should he decide to take the herceptin, discuss taking it with Faslodex simultaneously with your husband's oncologist. Dr. Dennis Slamon, who invented Herceptin, has stated at various meetings that he feels this is the best antihormonal to combine with herceptin in her2+ER+ patients. That way it may be harder for his tumor to escape/become resistant to the herceptin.

Perhaps your husband's oncologist could call Dr. Slamon and discuss your husband's case with him.

Again, I hope this helps more than frustrates you!

[StephN]

Hi again -
You have an unusual situation with the liver trans and immune system issues.

However, as one who also FELT FINE when my liver mets were raging and had taken over some 60% of my liver while I FELT fine, I am sending a word of caution. Feeling fine does NOT mean that a person IS fine. I had no idea that I was as sick as I was and that my cancer was advancing fast and furiously. Not a pain - not a twinge. Others here have said the same - advancing cancer is rarely painful, even in the brain, until the tumors are pressing on nerves or interfering with some other normal, necessary function.

Cancer is a very sneaky disease and is good at fooling our bodies until we are caught unaware.

I was very likely not going to live out the year - was my prognosis at the time my mets were caught. Fortunately, the combination of drugs worked for me and Herceptin has been a major part of that. Most often mets that get moving with a real foothold are not halted and situation reversed. I was given a reprieve and will never again take for granted "how I feel" vis a vis my cancer.

Knowing what I now know, I personally would rather try a treatment rather than leave my body to the whims of the cancer.

[MarilliM]

Hi StephN - There is only one problem here, nobody here had a liver transplant - it makes a whole lot of difference when it comes to treatment. No, we don't want cancer to take over his body, however, any of these treatments can be fatal to him before his time. I really should not ask questions anymore. I've been doing this for 5 years and am back to square one. No one falls into this category. I think radiation is his only option as new things develop. However, I don't know how much radiation a body can take. So far he has had everything radiated including a small spot that showed up on his lung. I think I am in the giving up mode and just let my husband decide what he wants to do for I have gotten nowhere. I do thank all of you and wish you the best outcome and good health. Idi

[Cathya]

Ida;

I have also been taken off herceptin because of my heart but am hoping now to go back on as the Serum Her2 test has me above the normal level. Gina told me that she took herceptin every 6 weeks at normal dosage instead of every 3 weeks to protect her heart and it worked for her for 2 years (she is stage 4) and I am going to speak to my onc tomorrow about this. I have tried the three week and once a week treatments.....neither worked and in fact the weekly was worse for me. Perhaps this might be worth trying. All the best to you both.

Cathy

[Lani]

Rather than relying on those who post on boards--why not go to the source?

I would be happy to teach you how to look up all the medical literature found in the National Library of Congress. That empowers you. A little use of a medical dictionary online and you are reading the same papers as the doctors.

This one happens to be free so no subscription required.

: Liver Transpl. 2004 Jan;10(1):1-6. Links
De novo breast cancer in patients with liver transplantation: University of Pittsburgh's experience and review of the literature.

Oruc MT, Soran A, Jain AK, Wilson JW, Fung J.
Thomas Starzl Transplantation Institute, University of Pittsburgh, Pittsburgh, PA 15213, USA.
De novo malignancies are one of the current problems in patients with organ transplantation. The incidence has been considered to be higher as a result of increases of oncogenic viruses in immunosuppressed organ recipients. Published reports have shown increased incidence of de novo tumors such as malignant lymphomas and cutaneous neoplasms but decreased incidence of breast cancer. A variety of factors affect de novo breast cancer development in organ recipients, including immunosuppression, viruses, and underlying disease. The aims of this review are to evaluate the incidence and management of patients with de novo breast cancer by giving the University of Pittsburgh's data, and to evaluate the incidence of de novo breast cancer in published reports in light of an age-adjusted rate. According to age-adjusted rates presented by the National Cancer Institute's Surveillance, Epidemiology and End Results data, we found increased incidence rate of de novo breast cancer in the previously published series. The University of Pittsburgh's incidence rate of de novo breast cancer was determined in a fashion similar to that for the Surveillance, Epidemiology and End Results data. Eighty-three percent of all patients were diagnosed at early stages, and it appeared to take longer for de novo breast cancer to develop in patients treated with tacrolimus than in patients treated with cyclosporine. In conclusion, surgical treatment of breast cancer in liver recipients is the same as treatment of breast cancer in patients without transplantation. However, the effects of chemotherapy, radiotherapy, and/or tamoxifen remain unclear in transplanted patients and need to be evaluated in larger studies.
PMID: 14755771 [PubMed - indexed for MEDLINE]

Related Links
Comparative incidence of de novo nonlymphoid malignancies after liver transplantation under tacrolimus using surveillance epidemiologic end result data. [Transplantation. 1998]

Incidence of de-novo breast cancer in women chronically immunosuppressed after organ transplantation. [Lancet. 1995]
De novo malignancies after intestinal and multivisceral transplantation. [Transplantation. 2004]

See all Related Articles...

IDI, to find this:

Put "Entrez PubMed" into Google, put the PMID (pubmed ID #) ABOVE
14755771 INTO THE ADDRESS BOX AND THEN CLICK ON FREE ARTICLE.

to find this I just put "BREAST CANCER LIVER TRANSPLANTATION" INTO THE BOX

The above article was written in 2004, the same authors may have more info since. Articles usually give email addresses of authors. I would offer to email the author to ask more info, if you made such info available. Otherwise, try to write yourself. I am sure the author knows you are desperate for information. Otherwise, have your husband's oncologist email the author for info. He/she may not know about this article

GOOD LUCK!

[Soccermom]

Idi, One question...

Have you spoken with a comprehensive cancer center such as Moffitt in Fla, Memorial Sloan Kettering in New York,or MDAnderson in Houston for opinions?
You might want to consider this option for more information.

Warmly,Marcia

[MarilliM]

Hi Lani - I so appreciate you taking the time to give me all that information and I definitely will be looking into all this stuff. As far as our Oncologist, well, he doesn't call anyone. There are 11 other Oncologists where he is and we have asked him if he has ever discussed my husband's situation with any of them. The thing is he really is the most qualifified and I think he works alone, which I think is wrong. He certainly hasn't come up with anything. Most of the treatments my husband has had we recommended to him and he says Okay. He basically does everything we tell him to. I have done a lot of research but after all this time I have learned a lot but nothing that pertains to my husband. So, I will be looking into all the things you are telling me. I think it's wonderful how you care about others. Thank you again. Idi

[MarilliM]

Hi Soccermom - Yes, we have been to MD Anderson in Orlando, the Mayo Clinic. We have had at least six different Oncologists and they all agree that thus far we have done the right thing. I agree with that because it has been over 5 years and my husband is doing better than others who are on chemo, but now all our options have run out. So here we are, do we want to take that chance? I just don't know?? Right now he is doing nothing. In June he had a petscan, everything seemed stable except one tiny spot on the hip, however, his tumor marker CA27-29 is 310, so it's definitely out there, just hasn't shown up yet. I want to thank all the ladies on this board, I didn't expect so many responses. A lady from another board told me to come here. Wishing you well. Idi

[StephN]

Hi Idi -
As you post more we can certainly see that you have been a very fine advocate for your husband for a long time.

Now that I have a "geographic fix" for you I want to make one other suggestion. Have you seen Dr. Edith Perez at Mayo's in Jacksonville? Look her up. She has done incredible cutting ege research on Herceptin. I have heard her speak at a couple of international conferences. I am not sure how many patients she sees, but I think she might be interested in your husband's case.

Also, since your hubby's mets are in his bones, I am wondering what is being done for those. Would a bone strengthener be out of the question with his liver situation? I have not researched biphosponates and liver transplant, but this question must be raised.

Yes, we are here because we do care, and want to give back - as there are so few people who really understand all we BC survivors go through and the complicated lives we now live.

[MarilliM]

Hi StephN - Yes, we actually had an appointment with Dr. Perez years ago, when we got there she was out and we met with another doctor. He basically agreed with what we were doing up to that point. However, I just emailed Mayo Clinic hoping Dr. Perez gets it. He also has been on Zometa (bone strengthener for years) however, his Oncologist took him off of it because his Alkaline Phosphate was always low between (70-80) and he felt like he didn't need it, so he hasn't had that for at least six months. I don't know if this was the right thing to do or not. His Oncologist is affiliated with Moffitt so we never went there. Even his Liver Transplant Surgeon switched his rejection medication to Rapamune, which is supposed to slow down cancer. It is actually being used at St Jude for the children, however, he had a reaction to it so they put him back on his original medication. Like I said, he has had everything except for Chemo. The reason Herceptin came up because it isn't a chemo, however, from what I read here it sure seems to have some unpleasant side effects. I do thank you for your time, you ladies are really wonderful. I have done so much research and asked so many questions, that, well I think it is getting to me since I really haven't accomplished much. I sure have met some really nice people here on these boards along the way. Wishing you the very best. Idi