Lung Mets growing / May start Herceptin soon

Kathy S in Tokyo · 03-01-2007, 04:38 PM

Hi, I'm just going to talk with my oncolocist about Herceptin today. Where I live, it's only available for stage IV patients with ongoing cancer growth, which a recent CT scan confirm me to be. My onco called yesterday afternoon and told me to stop taking tamoxifen to get ready for whatever regime we discuss today and that I should go see him sooner, rather than waiting for next week's appointment. I'm glad he's with the program and that he didn't let it slide until next week, but I know I'll have all sorts of questions for the women here later this weekend.

Kathy S in Tokyo
42,
partial masectomy Nov 2004, clear margins, ER/PR++ HER+++
Tamoxifen for a year
Recurrence Nov 2005 in axial and neck lymph nodes
Rads for 30 days, then CEF-T Chemo for 7 months
Lung mets showed up mid-chemo , shrank a little w/final few treatments
Faslodex for a few months
Tamoxifen and monthly Zoladex from Dec 2006
Feb 22 CT scan showed further growth of lung mets
Off to onco today

janet/FL · 03-01-2007, 05:26 PM

Welcome Kathy. I think you will find that you will get a lot of information on this site, both from reading and asking any questions you can think of. We have both men and women on this site and they have been a great help to me on this journey. Really knowledgable people that keep up with the latest research and willingly share their knowledge. Hopefully, Japan will make some changes in treating Her2's. Your doctor seems to really be working with you. Does he know about Tykerb? It should be approved soon for Her2's in the USA and there are some clinical trials. Don't know if there are any in Japan.
Hugs

vickie h · 03-01-2007, 06:01 PM

Welcome Kathy, Your Onco Seems Like He/she Knows What They're Doing. The Sooner The Better, I Always Say. Stay On This Site Whenever You Can Because There Is Alot Of Good Info Aand Support. There Are Several Studies Being Done With Lapatinib, Hki=272 And Bibw-2992, All Of Which Are Tyrosine Kinase Inhibitors. Lapatanib Should Be Approved Here Within The Next Several Weeks, But There Are Other Drugs Almost Identical To It Being Used In Phase Ii Studies Everywhere. They Target The Epideral Growth Factor Receptors, Which Is Usually Needed With Her2 Cancers. I Wish The Very Best For You And Let Us Know How You Are Doing And What You Decide. Love, Vickie

Lolly · 03-01-2007, 06:22 PM

Welcome to the group Kathy. Waiting to hear your report, and hoping to hear that a synergistic chemo such as Navelbine is being added to the Herceptin to really give those lung mets a one-two punch!

<3 Lolly

Andi · 03-01-2007, 08:10 PM

Kathy - I am currently taking Navelbine and Herceptin. I have my next checkup tomorrow, but at my last one, my chest xray was much improved. I feel like this combination is working. I had to quit taking tamoxifen because my lung tumors were not hormone positive, is that why you were asked to quit taking it? I'm glad to hear your doctor wants to get right on your treatments. Best of luck as you proceed, please keep us posted.

Joy · 03-02-2007, 02:21 PM

and sending you good treatment decision vibes a quick turn around on those dumb mets!

janet/FL · 03-02-2007, 06:20 PM

Kathy, I sent you info on another list of the possibility of your Herceptin being covered by the maker of it. If you get this message first--just go to the links page and look for resources. then under resources look for Financial assistance.
http://www.her2support.org/resources.html

I sure hope this helps. Don't know how it will work in Japan.
And did your doctor consider adding a chemo to the Herceptin? Such as Navelbine as recommend above?
Hugs

Kathy S in Tokyo · 03-02-2007, 08:46 PM

Navelbine and Tykerb were both mentioned yesterday. He said he wants to start on Hercept alone, as early as next Friday after I get an EKG, another heart ultrasound, a chest X-ray and some bloodwork. THere goes my lunch date...:-)

He said that after seeing how I do on the Herceptin, the next step will be to add Navelbine, so I'm not wasting any money on getting a nice haircut just yet.

I expect that I'll slim down a bit now that I'm off the Tamoxifen and Zoladex and I'm excercising 3 or 4 times a week at the gym and pool. That might effect the cost of the Herceptin, as dosing is 4ml per kilogram of body weight and I'm about 16 kilos (35 pounds) heavier than I was before cancer and treatment.

I've contacted the Japanese Genentech compy before about trials and will do so again about a Japanese version of the finincial assistance in the site you sent me for US residents. One can hope.

Kathy S in Tokyo · 03-07-2007, 12:30 AM

Now that I'm on the road to Herceptin treatments, I'd like to know if there are things I can do to prepare. I was ready with things to ward of nausea, a few wigs, lots of hats etc. for chemo last year. What will be useful this time around?

I'll start on Herceptin solo and probably advance to Herceptin and Navelbine depending on the results.

What help you be comfortable during and after treatments? Will I be able to work for an hour or two the evening of treatments or will I need to stay home and rest?

I worked throughout my chemo regimen last year, but chemo was always on a non-work day.

TIA for any advice

Getting a little excited,

janet/FL · 03-07-2007, 05:24 AM

Hi Kathy,
You might want to read the thread on wierd things happening on Herceptin, but in general, after the first tx when they will give you Benadryl and Tylenol as a premed, you won't have any premed and you will feel just fine afterwards. You may be sleepy from the Benadryl the first time. There are others that have slight flu symptoms, and still others that are allergic to it. It seems that some that did not react well to it, had the fluid that was mixed with the Herceptin changed and this heipled them tolerate it.

I do not expect you to have any problem with it and except maybe for the first infusion, you will probably work with no problem. And no losing hair! Not with just Herceptin. Your mileage may very, but this drug was very gentle with me and I react to everything!

Here is on of the links for those that had trouble with it.
http://her2support.org/vbulletin/showthread.php?t=27118

Hugs,

Kathy S in Tokyo · 03-08-2007, 01:47 AM

Thanks, the wierd thing thread is a little scary but it does sound like this is much easier than the caustic CEF-T chemo I had before and I have been lucky about not reacting to things so far. (Other than the bill; I may need resuscitation at the cashier on the way home...I hope some cute intern is around)

Robyn · 03-08-2007, 11:00 AM

Kathy,

Our situations sound similar....

I did Herceptin alone, and the only definite thing I could say, was the first loading dosage made me fill like I had a fever, chills and was a bit achey. That last the night of and then I felt okay.....the second time, the dose was less, and I kept taking tylenol and advil to prevent those previous feelings. I felt pretty much fine after that, and subsequently the rest of the dose's (eventually combined with a drug study Omnitarg, which was a target therapy as well). I progressed slightly on both of these regimes, so I imagine chemo will soon be in my future, right now I am on a break. Hang in there and it is interesting to hear what the system is in a different country. I am in Canada and the rules/regulations are different that the U.S which can be frustrating too!

Robyn

MGordon · 03-08-2007, 11:16 AM

The best advice for treating side effects we ever recieved (other than this board of course

) came from our Chinese Herbalist/Acupuncturist. She would meet with Lisa weekly and "custom" mix her herb teas and supplements and we feel we were very lucky with the "bad" side effects of most of the chemos! I am not implying no side effects - just manageble side effects (the worst was the Andromyacine/Cytoxin/Taxol).

Hope this idea helps

Love and Light
Mel

Kathy S in Tokyo · 03-10-2007, 04:59 AM

Well, Friday went well with my first double dose although I did have trouble sleeping at night. It might have been because I was worried about waking up late for an event at my daughter's school this morning though. I will get my smaller second dose next Friday.

Bev · 03-10-2007, 09:23 PM

Kathy, In all likelihood you've seen the worst of it. For the majority, Herceptin has annoying but not debillatating side effects. My nurses told me if you make it thru one you will sail thru the rest. Sounds like you have it down. Hope Herceptin will make it go away.

A blanket might help if they don't have them at the treatment center. I remember being chilled. Bev