Need advice, Encouragement, put on chemo

[Barbara H.]

Hi everyone,
As you know from my previous posts I was orignally diagnosed in June, 98 and had ACT followed by radiation. In June O4 I reoccurred with a 3 cm brain tumor, left frontal lobe and mets throught out my system, skin, liver, lungs, and various nodes. Becasue of my daughter's wedding in July, my oncologist decided to start me on Herceptin alone. I had a great response and my tumor markers went into the normal range, at one point CEA was 0.03. Of course , I was hoping to be a long term survivor with Herceptin. This past November, I had another scare when an MRI showed possible reocurring mets. A crainotomy revealed radiation necrosois.
Recently my cea turmor marker has been creeping up and my oncologist thought I should have a pet scan. The difference from the scan in O4 is that my organs are NED ( the good news) but that I now have minimal beginning activity showing up in the bones. Although there is some positive news with all of this, I am rather down about having to add chemo because I was enjoying a rather good quality of life, and like everyone else is this condition, hoped it would continue.
My oncologist will be treating me with Zometa every 4 weeks and Navalbine 2 weeks on and one week off. I will continue with the Herceptine every three weeks. The sense I get from him is that I will be on some kind of chemo for the rest of my life. I don't think that he imagines that I will get to the point where I can be on years of maintanence Hercepitin. This is a sad thought for me. He also has not had a patient like me who has responsed so well to herceptin initially as I did, and knocked out that amount of disease by itself.
I had the teatment immediately last Thursday, (Zometa, Navalbine, Hercepitn). That evening I was feeling rather achy with chills, but was able to keep it under control with tylenol. The next morning I was fatigued, but didn't feel too badly, and went to school. Within an hour, my whole body was aching, I was feeling awful, and went home and stayed the entire day in bed taking tylenol every four hours. I wasn't able to go to the Brain Tumor Clinic on Friday and receive the results of my MRI. I had a bad night Friday, but by yesterday morning I was feeling much better. Today I am feeling a little achey again and wonder if it is due to the Navelbine.
Here is the email my oncologist sent me yesterday with my newest results:

"At 5PM on Friday the report of your MRI had not been posted. I did review the
two PET scans and they look quite different; some of the differences results
from changes in the technique between 2004 and 2006. In your case, very small
lesions can be seen by the PET scan. On CT the lesions are small and have not
caused much apparent damage to the bone. I am glad you are feeling better. I
don't think you will have the same reaction next week if you receive
chemotherapy on Thursday."

I would appreciate any thoughts you have about by current situation, and if there is any hope for me that the Herceptin will work alone again.
Thanks,
Barbara H.

[Becky]

Dear Barbara

Sorry you had a set back but things will get better soon. I do believe that you can get back onto Herceptin alone. I think your onco needs to get the tumor cells under control alittle better with some chemo and get those nasties in line. It is discouraging I am sure but there are many women on this board, Christine included, who needed lots of chemos and radiation and are now on Herceptin alone for many years. This is probably what you need. And you know the Herceptin is doing its job too.

I am thinking of you and I know you are going to do well. I hope your next round is not as bad.

Also - I feel the way you do with the Zometa (achiness, flu like etc) and it is not as bad as the treatments go on (but the next one might be the same). I have never had navelbine so I can't comment on that one but your "chemo" symptoms are my "Zometa" symptoms. I also feel a bit nauseous too from it. But it does really strengthen the bones big time. You will know for sure as you won't get Zometa everytime and can gauge it when you get the Navelbine alone (which you will when I look at how you are getting these drugs). Enjoy the rest of your Sunday.

Love, Becky

[StephN]

Hi Barbara -
What an update - you see the Herceptin did its work and shut down the mets where they were prior to your daughter's wedding.
The bone involvement is new and may even have a different hormonal makeup than the others. Especially since they grew while the other mets stayed shut down. This concept should not be new to your med onc. It is one to try and work on somehow.

Zometa is easy to tolerate for me - I have been on it for close to 4 years now and nothing has come back in my bones. I did not take it with chemo, but got it afterwards as maintenance as it was brand new in those days. (A newer version of the old Pamidrinate that was a long infusion.)

Navelbine, if it is effective for you, is a drug that you can take breaks from and than use again when/if the need arises. I took it with Taxol, so always thought the Taxol was the problem when I felt bad as it was the drug I had the most of.

You may hover on the border with your red and white counts and not be able to get the red and white cell booster shots. That often happens and is almost worse than taking a bigger dose of the drugs so you are able to get the boosters so that you feel actually better. (Hope that made sense?)

I would be surprised if your doc meant that you will need to stay on CONTINUOUS chemo for the rest of your life. I still surprise myself that I am off chemo for so long and holding my own, since my mets were so aggressive in the beginning. Once you get a firm grip on these bone mets, you should be able to get a break from chemo. If they do not respond well with the new regimen, then you may have to add a hormone suppressor.

Lots of chamomile tea and get some Neurontin if you continue to feel very achy.

[Barbara H.]

Thanks for your reply, Becky and Steph!!!
I think he meant that I would be on the Navelbine for as long as it works or until the neuropathy gets bad. He will give me weekly breaks when my blood counts are low. I am worried about the low counts because I am in the classroom, and my oncologist wants to wait to see how I do before I receive neupogen. Once the Navelbine doesn't work, he will then switch to another chemo. I doubt that my homone status has changed, but I guess it is possible. He feels from the pet that most of the cells are in the bone marrow and that's why the cat scan shows so little involvement. My CEA is rather reliable so he will check that during the next few weeks. I just hope that at some point I can get back on Herceptin alone.
Thanks again for your encouragement.
Barbara H.

[pattyz]

Barbara,

In reality, it is up to you whether to stay on the combination after a good response or not.

I had a great response in late '02 with Navelbine/Herceptin. When scans showed NED I stopped tx. If my bone mets had been more positive I would have kept up with the Zometa.

Since you have once had such good response to Herceptin alone, I would be inclined to try that after tests/scans show good improvement with your current mets. I'm with you all the way on QOL!

big hugs,
patty xoxox

[TriciaK]

Dear Barbara, The navelbine-herceptin combo for 6 months really worked for me, with minimal side effects (some mild nausea, paper thin nails, fatigue, loss of appetite). I also took femara. Then I was on herceptin and zometa with the femara for 9 more months until my EF dropped too low to stay on herceptin. I am currently NED, still on femara and zometa. Everyone responds differently, but nearly everyone says navelbine is one of the easiest to tolerate chemos. I think most of us will find the herceptin will keep things in check for a long time, with occasional "boosts" of chemo if required. A good diet, positive thinking, and prayer also help, and a good support system, like you find here, works wonders, too. I think that many of the oncologists are still very much surprised at how well we are all doing, because her2 BC used to be all but hopeless, with very low survival rates. Now they are seeing women surviving (even thriving!) much longer and there is even hope that our BC can become just another chronic managed disease, like diabetes. I personally think they are watching all of us in awe because they haven't seen anything quite like it! At least that is the feeling I am getting from my onc, who has been in practice a very long time. In fact he has known me a very long time and he still seems amazed that I am doing so well. So hang in there, take it one day at a time, and keep in touch with everyone on this wonderful website.I know our prayers for each other are truly blessings! Hugs, Tricia

[Lolly]

Hi Barbara; I sympathize with you but feel sure you will be able to manage this combo well, your onc's plan sounds good. I'm having Navelbine/Herceptin for the third time since 2001, with Herceptin maintenance in between. Just recently added Xeloda for more "punch".

Hopefully you'll respond well and be able to drop chemo, at least for awhile; after my first recurrence I was on maintenance Herceptin for 2 & 1/2 years before I needed chemo again! After my second recurrence I had a one year break. And so it goes, and I agree with Tricia, our oncs are just standing back saying "Wow!" because this is new territory for them too. My onc says it's an open book for me.

Hang in there, hope you feel better soon.

<3 Lolly

[Toril]

I was on Navelbine - Herceptin for almost one year. I never had any problems. Very well tolerated and effective for my liver mets. Navelbine could be hard on your veins, I did get a port after about 6 months. Best of luck!

Toril

[Cathya]

Barbara;

Perhaps another loading dose of herceptin would help you. Look up Gina's posts and you will find her strategy for fighting off recurrences with herceptin. Since you seem to be a strong responder it might work for you. Keep us posted.

Best regards,

Cathya

[Sherryg683]

If the Herceptin isn't working alone, maybe they will add Lapatinib with it, when it's approved. I am excited about it's release. It may be something for you to look at..sherryg683