TRIPLE POSITIVE GROUP

hap - every Phase II trial that includes Herceptin, and there have been several since the drug gained FDA approval many years ago, reports side effects. The drug has been in use for more than 20 years, so there is ample documentation. Every health professional, and patient for that matter, has the capability to report adverse events to the FDA, for any drug that has approval.

Here is the form:

https://www.fda.gov/safety/medwatch/howtoreport/downloadforms/default.htm

Unfortunately, the average age of breast cancer patients skews toward post-menopausal women in their 60's, who come to the table with potential co-morbidities. It is critical to have enough rapport with your oncologist that the risks of any therapy are discussed in advance and the patient is aware and can make an informed decision. However, any treatment for cancer has side effects, some of them unanticipated - that is the nature of the beast. This is not a business of guarantees, about efficacy of treatment, possible side effects, or even survival.

Taco1946 - I too was caught blind sided by the HER2+ status. I actually was on vacation in Arizona and got a call saying test came back negative from Mayo Cl. Had my lumpectomy, did my brachytherapy and met with dr when finished. Caught me totally unaware that testing on surgery sample had come back positive. Someone dropped the ball on notifying me about that. That changed everything, took me a couple of days to wrap my head around this change in plans. Will have taxol #7 tomorrow. Can see the finish line in the distance, positive that I will make it!

KB870 - yay for you!

On the way to taxol #7.

KB870!!! ::doing happy dance::: congrats!

May all be well!!

Hugs from TN !

KB870, most excellent news.

DeniseT, I remember being in a fog the first five days after TCHP. The steroids kept me awake and crazy. I often took to vacuuming at 3 am and researching breast cancer until the sun came up. Glad to hear you are hanging in there.

HapB, I hear your concerns and can understand your frustration. I have poured through ASCO guidelines for treatment plans and found them to have bright lines that seem arbitrary. For example, Her2 + tumor 2 cm or greater is treated with perjeta and less than 2 cm is not. Once a patient is staged, they are put in a group and receive the one size fits all treatment plan for that group. Add any other non-standard factors and specifics and there is no pertinent research to hang your hat on. I hope you can get comfortable with your plan

HapB- what does your MO say about the bone pain? The paperwork I was given by the MO said that bone pain is a rare but serious side effect and to report it to you physician immediately. I checked the FDA adverse events and bone pain has been reported. It's in the drug labeling as well as a possible side effect.

You can and probably should report it as an adverse event on the FDA website as well. Although it is difficult for the governing bodies and the manufacturers to assimilate adverse events reported after a drug has been approved because adverse events reported during post-approval are reported from a population of unknown size and controls are not in place to compare data, it is important that patients and providers report these side effects. You can also lean on your provider to research this as they should be aware of additional adverse events reported after a drug has been approved. This information is public.

That being said, your side effects are real. I don't think anyone is doubting them. If you MO isn't taking them seriously, I would absolutely seek another opinion.

For me, Herceptin is the least scary of the scary poison they're going to pump into me starting in a few weeks. Despite feeling like I have no control over what's happening with my body, I remind myself many times a day that I do have *some* control over this process. You are in control of this, too.

Hi kae!

Yes, Zoladex or an ooph may be other options. I can't tell you whether they will be any kinder to you because they essentially do the same thing to your body: stop ovulation. I just talked to my new MO yesterday, and she's recommending an ooph for me because I'm not interested in doing Zoladex for 10 years and she wouldn't recommend taking a break from my meds to test whether I'm in menopause or not. Right now, she's thinking that I will be on aromasin for 10 years, given that I was diagnosed at Stage IIIA. If I were stage II, she might have recommended doing the BCI test after 5 years to see if I were at high risk for recurrence, and then make the 5 or 10 year decision. But, given my "young" age at diagnosis (46) and my stage, she would consider the BCI test a waste of money.

Good luck! Has your MO suggested any meds/practices to reduce your bone/joint pains? I can't say why I haven't experienced painful problems with Zoladex + Aromasin except that I'm lucky in some way. I do swim laps daily in the summer, but I'm not sure if that makes much of a difference. ((Hugs))

Kae, Lupron, Zoladex and ooph all accomplish the same thing...they put you into menopause. I'm sorry you're having so many pains. Definitely talk to your MO about how debilitating your pains are. Typically, if you have problems with Lupron/Zoladex, you could just take Tamoxifen alone. That puts you in a tough spot since you can't take Tamoxifen. Have you tried Claritin (notD) to see if that helps? Have you tried exercising? Nothing strenuous...just some walking daily. I found/find that staying active (walking 5 days a week) helped with chemo and now with menopause/AI.

Elaine, I had an ooph in September of 2015. My gyn and MO both recommended it. I was 41 when diagnosed so I would potentially need to get Zoladex for 10+ years. My MO said there would never be a good time to have estrogen running through my body. It was a tough decision because I know keeping your ovaries is better in the long run. But I certainly didn't want to go in monthly for a shot. The ooph was quick and easy. I was at the baseball field the next morning.

I'm not sure how long I'll be on an AI. My old MO said she doubted beyond five years but my new MO said 10 years automatically. We'll see...I have just under three years to make a decision.

hi kae99- I had terrible all over pain from Arimidix but since switching to Letrazole I only have pain in my tailbone. The pain difference between the 2 meds was quite noticeable.

Best wishes on your surgery tomorrow. I'm praying you have pCR and that the doc finds a solution for your pain. Hugs

HapB. And any others interested. I am one of the women who had nasty SEs with Herceptin. And all the rest of the toxic waste infused into my body. But-I had a nasty horrid rare rapidly growing tumor-that continued to develop new "shadows" on MRI after dose dense adria and cytoxin. Added taxol then taxotere and had more shadowing in a month. Started with a LVEF of greater than 60-and it upped and downed to a low of mid 20s-putting me in full heart failure-never to have a dose of Herceptin again. I called Genatech and wormed my way to a research area. Have talked with someone on the Herceptin research team several times. I will never have H again nor any other agent that is cardiotoxic. But-I am still here.

That being said---I am a 13 days away from my 5-year anniversary of my first day of chemo. And. I am on the right side of dirt. I still am battleing SEs: still have cardiac issues, my H&H is not high enough to support life in a dead roach, no iron stores, bone pain, joint pain, and so on just like may of the others in the group. My oxygen SATS are low. I have adhesions on the right chest wall-went to PT for 6 months and now I do the therapy at home. Therapy-movements and loosening of the adhesions to awake the next morning being stuck again. For me to be alive 13 days from my 5-years is nothing short of a major miracle. Major.

5-years of hell, but on the right side of dirt. The @$$^@#$$^ ex-husband-according to his non friends-is in total remission from his non-small cell lung cancer. But is smoking again. In 9 days it will be the 5-year anniversary of the last time I saw his #$#%^#@ head (I paid my attorney extra not to have to see him). I have lived to see the birth of 2 grandchildren: Cora was 3 in early April and Drew was born mid-April. My oldest is in a solid long term relationship with 2 wonderful step-children. My second is in a wonderful relationship with a young woman who goes to Cross Fit and fights nasty crime as does my son. My third is the mom of the 2 little ones. My 4th just graduated from law school and is about to sit for the bar. All in the past 5 years. I have moved from a Dean posiiton that I hated to a director position that I disliked back to a pure faculty role-that I love. I had to put my therapy dog down on Valentines Day-and in May I rescued a 90 pound labradoddle and a 76 pound goldendoodle. I love them. And am in the process of going through the therapy protocol so they can go to work with me and save students emotionally through their love. Because I can.

And. Best of all. I have finally learned to give myself permission to do less. And. Permission to fail without beating myself up.

To the new women. Welcome and I am sorry you are here. But this is the best place ever for support and love and kindness and passion.

Much much love. To each.

Susan!

Glad to hear about all the good things happening in your life, but sorry to hear you're still suffering side effects from treatment. Happy Almost-Five-Years-Out! I love just being a faculty member, too. My chair is leaving, and I've been asked to serve but NAH! Who wants to attend meetings when you can be working directly with students???? Best wishes, and be sure to come back to inspire the rest of us when you're even further out!!!

Susan, it's always great to hear from you. Congrats on your almost five years. I'm sorry you've had to deal with all these long term side effects but I agree that it's always good to be on "the right side of dirt".

hap - you could continue the Taxol without Herceptin, but it is hard to say how much of an effect it would have as a solo systemic treatment for a Her2+ patient. The reason to have the two together is for the Taxol to help the Herceptin work better. If you drop the Herceptin, the reason for the Taxol becomes somewhat moot. The aggressive driver of your cancer, the Her2+ part, would be receiving no targeted therapy. If you are strongly ER+ the actual chemo may have less effect, and you may actually achieve more systemic control if you proceed to anti-hormonals at that point.. However, it is important for you to know that more people complain of bone/joint pain from those drugs, than from Herceptin. You asked earlier about how many patients recur. Generally, 30% of early stage (stage 0-stage 3A) recur. How many of those patients had chemo now that Oncotype Dx, and other genetic assays, are available to help with chemo decisions, is uncertain. How many of those recurrences are local, loco-regional, or distant - not sure. I have been on this site long enough to see all three things happen to people who had chemo, and to those that did not.

Links to some SEER data:

https://seer.cancer.gov/statfacts/html/breast.html

This is a long thread devoted to this subject here on BCO, and is worth reading:

https://community.breastcancer.org/forum/105/topics/812929?page=1

hap - no way to know, but chemo is thought to be less effective on strongly ER+ cancer, and the Her2+ aspect would be less effectively treated without Herceptin. This is something to discuss with your oncologist - I would ask him/her if you would get a bigger bang for your buck with anti-hormonal therapy than with Taxol alone