Vacation from Herceptin?

tousled1 · 08-28-2006, 05:56 AM

Has anyone taken a vacation from Herceptin?

I'm on weekly Herceptin and am thinking of going off Herceptin for about 3 months. I've been experiencing a lot of side effects and feel that my body is just crying out for a break. Just wanted to know if anyone else has taken a voluntary break from Herceptin. Any replies would be appreciated.

mts · 08-28-2006, 06:54 AM

What Stage are you? Doesn't that dictate the need/length of Herceptin?

I'm Stage I. During my treatments, I did take a month off... like you, I was just plain tired!

I had started treatments every 3 weeks, but after 6 months or so, I was getting nausea and an overall yuk feeling. I then went on weekly and then every 2 weeks and finally back to every week because the larger dose just kept making me feel terrible.
I went off herceptin for about a month and it felt great. When I returned to treatment, I did it weekly until completion at end July. This was so much better.
I really was to worried to get off the Herceptin for any longer (that security blanket thing) than a month, but evident by other ladies undergoing Herceptin, there are those who have discontinued tx and done well.
I know the side effects are really bothersome... to the point that we are somewhat debilitated by them. No one knows your body like you- but if you think about it, no hard data is available to emphasize length of treatment in early stage...and because of that, my fear of getting off the herceptin completely overshadowed my side effects. I finally finished in July and in hind-sight, I'm glad I stuck with it.

Maria

mts · 08-28-2006, 07:05 AM

I just read you are Stage II and realized that you also just finished chemo... No wonder you want a vacation from Herceptin!
We all talk about QOL and this perhaps may be time for you to assess your options. We all know that kicking cancer in the rump while its down (especially after chemo) is the best way to rid oneself of the disease... and Herceptin helps that process.
If all Stage I's were told it was OK to get Herceptin up to 1 year after chemo, I can't imagine that a 3 month hiatus between treatments would make a huge difference either.
Obviously this is something that you will want to discuss with your onc.

Hang in there!

Maria

tousled1 · 08-28-2006, 07:48 AM

Maria,

Actually I'm Stage III. I have my appointment this Thursday for my Herceptin and am going to speak to the oncologist about taking some time off. I will have had 11 weeks of Herceptin and I know that there are studies now evaluating 9 weeks of Herceptin vs 1 year. I don't think anyone knows yet how much or how long we should be on Herceptin. I finish radiation next Friday.

Since my diagnosis it seems like I've been a hamster on a wheel. Time for me to get off the wheel and stop and smell the roses, so to speak.

Cathya · 08-28-2006, 08:50 AM

Kate;

I'm also stage 3c and off herceptin (non voluntarily) for the past 4 months. I just went for a Serum Her2 test and will let you know the results...perhaps if I have remained (assuming I was) "normal" that will be an indication that herceptin hangs around in our systems. Certainly my nails are still soft!

Cathy

tousled1 · 08-28-2006, 09:40 AM

Cathy,

I would be interested in the results of your HER2 serum test. I asked my onc about it last week and she said she didn't know how to go about getting it done. My last tumor marker was at 15 which is considered normal. Interestingly, since my diagnosis and all through my treatments my nails have been growing and are stronger than they ever have been. I used to have very soft brittle nails and now they are strong -- get manicures which I never could do before. Go figure! I guess these drugs affect each and every one of us differently.

Cathya · 08-28-2006, 10:42 AM

Kate;

I got the test done at Quest Diagnostics which are located all over the US. You just need a requisition from your onc. Look on the recent thread I posted asking how the Serum Her2 test is working for Lolly's and Becky's comments. Also, I hope, others. I'll post my results as soon as I know. I also like the idea Becky mentioned of having the Estradiol levels checked to be sure the AI or anti-hormones are working ...if you're hormone positive...forgot to check.

Best regards,

Cathy

sarah · 08-28-2006, 11:52 AM

My oncologist has said that once in a very great while you can go 4 weeks between treatments but doesn't suggest doing it too often. I'd work on the side effects and helping them unless it's heart related.
good luck
sarah

Annlyn · 08-31-2006, 06:47 AM

I was on Herceptin weekly for nearly 4 years and regularly took breaks of 2-3 weeks - I always felt so free!! Haven't had a break now I am on 3 weekly but I wouldn't hesitate to miss one so I could get a 6 week break. Do what ever you feel comfortable with you'll feel much better for it.
Good luck with your decision making
Annlyn

kim · 08-31-2006, 07:13 AM

Kate,

I think we can all relate to that feeling of needing a break from treatment.

I will tell you from my own personal experience that it took me a while to bounce back from chemo and radiation. But, I did start to feel better even while continuing on the herceptin. It took a good while and even though I did not feel like doing it regular exercise really helped.

I see from your signature that you are only just finishing up chemo and radiation and have just begun herceptin. You may want to give yourself some time to get recover from the other treatment before stoping the herceptin, you may find you start to feel better.

It is so hard to know how much herceptin is enough. But being stage 3 with many nodes you may want to err on the side of over treatment. If your dr will do a test for Circulating Tumor Cells that might help you make a decision-my dr has done this test and here is my experience....

I was diag stage 2, 1 node. After dose dense tx and 1yr of herceptin my dr checked for CTC and I came up postive for CTC. Because of this he decided to keep me on herceptin past 1 year. He has been repeating the test every 6 months and so far all those checks have shown no CTC. I know this technology is new, but in my case it looks like taking herceptin longer has made a difference.

I don't know if any of this helps at all. Everything I have said aside I also believe quality of life is an important issue that is often overlooked. In the end you need to do what feels right to you.

Hugs,
Kim

tousled1 · 08-31-2006, 03:41 PM

Thank you all for your replies. I just went to oncologist today and had my Herceptin. I have decided that I am going to take 3 weeks off and then do the 3 week Herceptin. My oncologist did try and talk me into not taking a break but she couldn't convince me.

I also had an HER2 Serum test done today -- first one. I'll be anxious to see the results as my tumor markers have been in the normal range (15.3) and my latest PET/CT scan was good.

rinaina · 08-31-2006, 04:36 PM

I just started herceptin August 17 and received a 90 min loading dose that day and August 24 and today, August 31 a 30 minute dose each of those days but will now go to every 3 weeks. We did that because my onc wanted enough on board until I start rads which won't be until Sept 11 because I will be out of town Sept 5-9,(las vegas). I keep hearing about side effects and I am confused. My onc and onc nurse told me there shouldn't be any side effects. What are you all experiencing as far as your side effects to herceptin? So far I am doing okay now that chemo is done. I still have some fatigue. I have noticed that my nose can get a bit runny occasionally but due to the fact that the nose hairs are gone, that is expected. A charming new thing is that unexpectedly a droplet will just fall out of my nose, in particular if I am looking down and it happens at the most inopportune times if you catch my drift. Lovely right?

tousled1 · 08-31-2006, 05:21 PM

Since I've been on Herceptin I've experienced a constant runny nose, headaches, and bone/joint pain. I have also had low blood counts and have had to have Procrit shots every week except for today. In addition I sometimes experience problems when I want to say something - I know what I want to say but the word just won't come to mind and sometimes the words just come out all mixed up. When I ask my oncologist about these things she says she hasn't heard of anyone having side effects from Herceptin. I'm almost ready to ask her if I'm her only breast cancer patient who is HER2+++. I hate when doctors trivialize symptoms that we are experiencing.

rinaina · 08-31-2006, 07:58 PM

Sorry you are having all these problems since starting herceptin. My nose has started to run more in the last 1 1/2 weeks but my onc nurse tells me it is because of loss of nasal hair. So far that is the only new thing I have noticed since starting herceptin. Can you be sure it is the herceptin causing these side effects?

tousled1 · 08-31-2006, 08:26 PM

Oh, it is definitely the Herceptin. About a week or so ago there was a thread about Herceptin and side effects. If you do a search it should come up. It was quite detailed and a lot of women responded to it.

Becky · 09-01-2006, 06:22 AM

Last night I went onto Breastcancer.org to read the latest discussion topic in August on Thinking and Memory.

One interesting thing hit me in regard to the side effect that we have all attributed to Herceptin - memory problems and not finding the "right" word (I have the not finding the right word problem).

This can be attributed (according to this particular discussion) to chemo but more likely to menopause or chemopause. Apparently low estrogen levels (and those on an aromatase inhibitor even more so) cause the memory problems and the not finding the right word problem. Women who don't have bc but are going through menopause or are perimenopausal also have this problem.

Also, abruptness of menopause (via chemo or oophorectomy) makes things even worse, especially for women under 50 or those that weren't starting to go through menopause before chemotherapy (like me and many of you). I think mine was bad as I wasn't going through it and 8 months after my last chemo, I got my period back but promptly got my ovaries removed and then went on Arimidex (all the while, being on Herceptin but only for a couple of weeks at that point) so... I blamed it on Herceptin versus lack of estrogen.

Even if you are ER/PR neg (I am only ER+ but PR neg hence the Arimidex for me), you still had chemo which at least temporarily (or for some, permanently) shuts down your ovaries.

I guess a test is those on Herceptin who got their period back and are ER/PR negative so they take no antihormonal. What side effects do they have in regard to memory (some others like tiredness, headache and runny nose I do attribute to the Herceptin and I get them too but not the headache every time).

Just thinking out loud here.

Kind regards

Becky

atdec05 · 09-01-2006, 11:25 AM

Hi all,

I have been on Herceptin for a bit over half a year.
I only had 4 DD AC before starting Herceptin - no Taxol (my onc. said it wasn't necessary since I was stage 1; though I've noticed other ladies have had it).

A few months ago, I started having bone & joint pain, which I thought was more associated with Taxol. Or perhaps as some have mentioned, it's part of chemopause?

- Anna

tousled1 · 09-01-2006, 02:46 PM

I don't think the professionals really know what the side effects of Herceptin are. In reading the posts on this board it is quite evident that there are many side effects -- not everyone has the same effects, but it seems that most do have some sort of side effect. I think some real research must be done on the side effects of Herceptin other than the LVEF.