Dr thinks I should stop Herecptin?

Midwest Alice · 10-21-2009, 05:19 PM

Hi Everybody, I have been just a reader lately and not posting. I have been having a hard time. I have some questions for my her2family.

First, great news:
MUGA up 11 points!!!!! Losing 30 lbs. really did help(I think)

PET and MRI and other test came back "good" the Dr said.
So I"M 18 months and NED!!!
He and She said I'm doing so well I can stop every 3 week Herceptin and 3 month Zometa.

I went along with stopping the Zometa and got him to agree to staying on Herceptin till April and we would talk about it again.

First question: I became a IV 1/09. and they told me I would be on Herceptin as long as it was working. They said they think I was IV from the start.
1/09Whole body scan: sclerotic bony metastases in the left 6th and right 7th ribs.
MRI of spine:Several small enhancing lesions outlined above are suspicious for treated metastases.

I am not sure when I will see the actual reports from my test. But I was told that nothing is there. The Dr. said that "since they were gone now" that confirms that they were cancer. So I am for sure a IV.

Would you stop Herceptin?

Any thoughts on this would be great.

Love and hugs to all,

chrisy · 10-21-2009, 06:09 PM

Tough questions,

On the one hand, the herceptin might be what's keeping the cancer at bay and if it were me I'd want a longer NED behind me before considering stopping.

On the other, you need to have a healthy heart! So herceptin holiday or dose reduction is a reasonable consideration.

I assume you are working with a cardiologist on the heart issues (I see you have been on meds for this) and it sounds like you've got some great weight control stuff happening.

Both of these were emphasized at ASCO Breast symposium in SF a few weeks ago. The findings were that treating the cardiac symptoms with meds and/or dealing with the "co-morbidities" such as excess weight can really get the LVEF (which is what they're measuring with the MUGA) back into the normal range and sustain it there, enabling people to continue the cancer therapy.

If you can get your cardiologist and oncologist to work together on this, it may become a clearer choice (or maybe just more confusing!)

schoolteacher · 10-22-2009, 06:17 AM

Alice,

I am also 18 months like you. I will have to decide if I am going to come off the Herceptin in February. The doctor told me I could take a break if I wanted to last infusion. I told him, I would like to do two years of Herceptin. My HER2 serum markers have been creeping up the last two times I had the levels checked. The last time it was 13.4. I hope the vaccine trial is what made the levels go up, and they will start to go back down.

Please let me know what you decide. I also had some a bone metastises in my L4. I am also taking Tamoxifen, and I worry about not taking the Herceptin with the Tamoxifen.

Amelia

Mary Anne in TX · 10-22-2009, 08:48 AM

Alice, ask your doctor WHY he wants you to stop herceptin. Make sure it is a specific answer and then get some clarification.
I'd be really curious about the answer.
I would be like Chris and want a bit longer being a IV, but that's just me. And I know the heart thing is big too. What a balancing act!

Karen Wheel · 10-22-2009, 09:32 AM

Well, I think that I would not want to stop either after reading your thread. I have to agree - I'm curious why the doc wants you to stop.

Here in Italy - they say I have to be on this first year - and I am all about doing it, even with some nasty side effects of headaches (daily!) and I still feel well, overall not super strong...
I had a consultation (phone) with a naturopath in the US, this last week and he said he thought 6 months was enough of the Herceptin and with my pH diet (I am controlling my pH daily) and gave up sugar, animal products and well... most everything.. :-) But he said I should go off and keep up with my supplements and some additional ones he suggested I add.

I politely said, thanks, but no. I do believe that the Herceptin is doing me a favor - and I want this first year to be clear - then, I'll go off and hope that controlling my pH can hold me in NED!

Let us know what transpires!
Hug! Karen

StephN · 10-22-2009, 09:57 AM

Hi Alice -
Congratulations on your successful weight loss. It really CAN make a difference in energy level and the exercise is always good for your heart. After all, it is a muscle, too, as my fitness club owner says!

Don't understand why your onc says to leave the Herceptin if your MUGA is up so much. If your number has rebounded so well, the drop may have not been all due to Herceptin.

Can you try the Neratinib trial or is it not for stage IV??

10-22-2009, 10:08 AM

I would go quickly for a second opinion. If your MUGA is normal, and your doctor does not think you are still at risk for heart problems, and you are stage IV, and the Herceptin is working, it is difficult to understand why he would suggest stopping the Herceptin. It is similarly difficult to understand why he would stop the Zometa. I assume that it is not the MD Anderson doctor who is recommending this. You are right to question his recommendation. Please go to someone more knowledgeable about breast cancer for a second opnion.

Jill

Chelee · 10-22-2009, 12:13 PM

Hi Alice, I believe I was orignally stage IV from the get go too. I had both hips lighting up on my 1st baseline PET/CT back in 06. They brushed it off as several different things and never did the recommended MRI follow up scans to rule out mets to hips. Now we find out I do have bone mets to femur.

I fought to stay on Herceptin back then as I believed it would keep me NED. I even got a 2nd opinion on continuing...but both onc said no since there was no data at that time that proved more then a yr of herceptin would be any better then one year. So I finished my yr and it ended. But now 3 yrs 9 months later I have had a recurrence. I immediately started on a loading dose of Herceptin/Zometa. And in 2 weeks time ran my tumor markers and for the 1st time in a year my TM'ers went DOWN just from herceptin alone! So I do know for me personally herceptin DOES work. It has to be your choice...but if you can continue the herceptin I know I would in your situation after whats happened to me. My ECHO's were all great while on herceptin and I really wished they had let me stay on it since now I really believe I was stage IV. So many decisions...its not easy. Good luck whatever you choose to do.

Chelee

Midwest Alice · 10-22-2009, 03:53 PM

Hey Everybody, thanks for the responces.

Christy, Hi, I do no have a cardioloigist. My locial onc put me on enalapeal.It has worked for me plus the weight loss. He said he is not confortable with any other drug and I would need to see a cardioloigist if I wanted to try to take something different to get my score up. I did the weight loss thing instead.

I am just back in town and see my local onc in Nov. I will be interested in his impression.

I may need to see a cardioloigist at this point. I am just so thankful I went up 11 points!!

I look forward to attending the SABCS in Dec. with Joe and Christine and meeting some of our her2support family. I will learn more and hope to meet more IBC'ers too.

Midwest Alice · 10-22-2009, 04:10 PM

Hey Amelia, I'm a school teacher too.. I'v been wanting to tell you that for a long time.

I have never ask for HER2 serum markers . or any blood test results. I guess this will be the next step in my education.

Midwest Alice · 10-22-2009, 04:27 PM

Hey Mary Ann, He was going to stop the herceptin and after I talked to him he said I could stay on it and we can talk about it again in April. These are the reasons I over came..

1. He didn't want to fill my body with poison if not needed
2. Studies may suggest that herception users may have more brain mets.. they don't know that its not due to the herceptin.
3.Its bad for your heart and my MUGA is up now but these scores can wave up and down
4. my test show nothing no active cancer

Midwest Alice · 10-22-2009, 04:35 PM

Hey KAren, What a great change you have made in your diet. I tlooked at the ph thing a little. Now I just give up sugar, red meat and processed foods. I have been off my plan for a couple weeks.
I have been dealing with hip and back pain. I have started seeing a pt twice a week.

My hips are locked up. No rotation.

Midwest Alice · 10-22-2009, 04:40 PM

Hey Steph, Don't know about the trial either.

The Dr. thinks my MUGA may go up and down. This is real insentative to get the other 20 lbs. off to get me to the top of a good range.

I have alot of research to do on this. Hope my scans are posted soon.

Midwest Alice · 10-22-2009, 05:05 PM

Hey Jill, This is the MDA Dr. Strange hu? . He compromised with me and said we could talk about it again in April. So I'm still on Herceptin.

Zometa
I will have my new MRI of my spine sent up to my back Dr. because of pain in my back. My hips also have little rotation if any. I am very active and this hip think is getting on my last nerve. I’m on top of this problem and plan on great progress. I have bumped up my pt to twice a week.

I am so thankful my spine MRI came back clear!!

We know I have some arthritis and degenerate disk disease. The ordered x-ray this month didn’t show that to be the proble. This hip thing is a little perplexing. Could the Zometa have caused some of this? I don’t think so.

Midwest Alice · 10-22-2009, 05:15 PM

Chelle, Hi Thank you. I too think the Herceptin worked. I, unlike most newbees, had my surgery first, then treatment. So I was kind of unsure of which drug was responsible for killing the spots on my ribs and spine. I guess all of the drugs were. I do know the met spots were there in January and now they are gone. I just had my PET and MRI two days ago, so I will be getting my reports soon.