what now? taxol/avastin not working

Pam P · 12-05-2008, 08:00 AM

My ca2729 is jumping up again - generally a good indicator for me. I'm having a pet scan in 2 weeks, then see the onc. on Dec. 24 (Merry Christmas) for results & new treatment plan.

Frankly I think it will be okay to get off the avastin which has caused increased b/p & other cardiac issues; and the taxol - increase pleural effusion & fluid around the heart. I think taxol has caused these as I had the same things with taxotere.

But knowing that yet another combo has failed me is really scary. Another drug in the arsenol used up, how many more to try? will the next one work? what will the scan show? What? what? what?

My onc. said I'll go back on herceptin or tykerb, probably tykerb. I've been nervous about not being on a her2 targeted drug these last months. But I don't know what chemo he'll put with the tykerb.

I've been wanting to get into the dm1-t trial, but so far i don't qualify with only bone mets in the studies' criteria.

Someone told me that her onc. said that after a while each new treatment doesn't have a very long positive effect. Do you know that to be true? I also got the feeling that when the research nurse told me I didn't qualify for anything currently on trial she had an air of sorrow more than just the trial. I mentioned the fact that it felt like I'm running out of options & her reaction was sort of in agreement with a weak 'don't give up hope yet...'

I'm also getting hit with cold after cold so I know my immume system is very low. I'm buying a juicer to see if I juice something everyday that might help. I don't know anything about juicing but I know some of you do it. Any tips, favorite recipes?

Thanks. Pam

Mary Anne in TX · 12-05-2008, 06:59 PM

Oh, Pam, you're just a saint. Bunches of chemo and not quite the right combination yet for those dastardly ol' mets. I know someone wise and experienced with juicing will comment. I just pray for a brain storm for your onc and for that CA 27-29 to head on down where it belongs.
I send tons of love and prayers your way.
ma

Joan M · 12-05-2008, 08:42 PM

Pam,

What about Gemzar and also continuing with Herceptin and/or Tykerb? Trials have shown that Herceptin can still have some benefit even if the cancer is not staying stable.

I don't know too much about the chemo drugs except for the AC and Taxol I took when I was early stage, because the met in my lung last year and brain this year were treated locally, and I'm still not taking any chemo, only Herceptin. I'm trying to decide what to do.

What about the other drugs for ER+ bc, and Zometa for bones?

It seems like your CA27-29 works for you. Mine has always been normal even though I've had spread.

I'm sure some of the other women with bone mets can give you additional information.

Joan

jones7676 · 12-05-2008, 08:54 PM

I hope they find just the right combination for you...there are many people who have been alive a long time because they got it right. I am hoping it is the same for you.

Mary Anne in TX · 12-06-2008, 04:25 AM

Pam, can you get another opinion from another onc to brainstorm about the chemo choice? Why did you go off herceptin? Good thoughts for today! ma

Sheila · 12-06-2008, 06:36 AM

Pam
I am also wondering why the Herceptin was stopped? It is so synergistic with Taxol and Avastin....my onc has mentioned Gemzar or Doxil for my next...would love to qualitfy for the Mc/DM1 trial, but I don't....I have gotten a long run from Taxol, but it is losing its punch and starting to make me so short of breath....sending a big hug your way, they will find the right combo for you!

Lori R · 12-06-2008, 09:59 AM

Pam,
I am not a juicing expert but I have been using a short cut. In the grocery stores here in Colorado there is a product line called "bolthouse farms", it is supposedly nothing but juice. The juices are refridgerated in the produce section.

They offer about 5 different combinations. I've been drinking the Vedge (looks like tomatoe juice but contains LOTS of different veggies) and then also the Blueberry smoothie.

They are somewhat expensive, but I just haven't made it to homemade juicing yet. So...maybe while you become a juicing expert (you can then train us) you could use this short cut.

Just a thought....Lori

Kim in DC · 12-06-2008, 10:10 AM

Pam,
I qualified for TDM1 with only bone mets. My skin and soft tissue mets did not progress after tykerb. Give it a try. You have to have failed tykerb and herceptin for mets on the arm that I am on. You have met that criteria.

Kim

Pam P · 12-06-2008, 10:53 AM

Thank you everyone for your thoughts, support & ideas.
To answer your questions.

Zometa - I do get aredia which does the same thing.

Herceptin - My doc took me off it almost 2 yrs ago & switched me to tykerb with xeloda. When that failed & he put me on just taxol & avastin, I asked why I couldn't get herceptin or tykerb too. He said he just wanted me to get the other 2. Not sure exactly why. But he will be adding tykerb back in with what ever else he puts me on next. Would the taxol & avastin have worked longer if I would have had herceptin too? Guess I'll never know.

Kim I think you must have qualified because in addition to the bone mets you also have skin & soft tissue. Even though they hadn't progressed it's still something to measure whether it stays stable or improves on the trial. I'm glad you got it. I hope it works great for you. I know I can't get in as things are now.

Thanks for the juice suggestions. I found a used juicer on line. My son picked it up & will bring it over this weekend. I hope it will be something I'll actually do & not be something that gathers dust on the shelf

Sheila - I'm starting to get more short of breathe again too. I'm not sure if its the taxol or avastin causing it. Are you getting any fluid on the lungs or around the heart?

Thanks again for your support - I love you all.

Becky · 12-06-2008, 10:56 AM

Dear Pam

When I look at your profile I see that you got the biggest run with something working when you were on Xeloda, Tykerb and Aredia. That said, what can you combine with this to give it an extra something? Maybe Herceptin. Are you on an anti-hormonal now? What haven't you tried? Trying Tamoxifen again might be fine if it is in combo with Herceptin. Any others to try?

There are a couple of more drugs - I would save them (like Gemzar or the new Ixepra (I think I spelled that wrong). I would save them because something else you tried before might be able to be beefed up alittle, not be so toxic so you can build yourself up which will be helpful (so you body can help you out).

What worked that you felt the best on? For example, if you felt good on Navelbine and Herceptin but you only got a couple of months on it, what would happen if you took that again but added Tykerb and Tamoxifen to it. I am sure you get what I mean. You should be able to put this in the best perspective since you are the one who knew how you felt on things.

I also want to add my name to the list in thinking about you. I know you will be able to put together a combo that will work well. (Also, why not Zometa or is Danusanab available yet. These might do better for your bone mets than Aredia. You should ask your onc if the bones get too "used to " Aredia just like cancer get "used to" a chemo drug. I don't know the answer to that but maybe they do get "used to " it and its not as effective anymore?) Please realize, I am only thinking out loud but there are questions to be anwered by your medical team.

Try to smile once today!

Julie2 · 12-06-2008, 01:29 PM

Pam,

What about T-DM1 trial? One of out members had good respose to bones with that.
Thinking about you.

Julie

StephN · 12-06-2008, 01:48 PM

Hello Pam -
Wish you had better news, but you see there are many suggestions here. I have the same question about the Aredia as Becky. Maybe Zometa is worth a try?

Also - what about RADIATION to those bone mets?? Do you have a good radiation oncologist to see?

For your IMMUNE SYSTEM - I know it is hard to take supplements when on treatment, but there should be something that would help.

PROBIOTICS are getting some good press, and it is known that immune health begins internally in the digestive system. The mucosal lining of your gut is really bothered by chemos (fast dividing cells in this part of the body), but maybe it is worth a try to consult with a naturopath about this. Probiotics are needed for building a "quick response" internal immune system.

Hopefully the above plus some good mushrooms could help your body fend off those cold germs.

Also, don't forget to have a spray bottle of bleach solution or good wipes to spray/clean on countertops, door handles and anything else that gets touched a lot. Fridge door & handles, computer keyboard, car steering wheel are just a few other places.

And don't forget when in a public place to move away from anyone who coughs, sneezes or sounds like they may be sick. Don't share their same air space!

Pam P · 12-08-2008, 05:26 AM

Thanks Steph & Becky for your suggestions.
Becky - I don't think the anti hormonals did anything for me. I've done tamoxafin, zaslodex, femara but they didn't do much good. I don't know about using those in combo with chemo - I don't think I've heard of people doing that. I did use zometa instead of aredia for awhile - then my onc. switched me back to aredia because of the data about jaw bone deterioration. I'll ask the my onc. about all your suggestions/questions they are good ones.
Steph - I think my bone mets are in too many different vertebra & ribs to focus on a specific radiation area. I'll ask after I have the pet scan & see where they show up.Maybe it is possible. One good thing - they aren't painful. I don't do mushrooms - what kind are best? How often? How do you prepare them.

I really hate this period of waiting for answers & next steps. It will be one month between the visit with my onc. & his assessment that it's time to change meds because of tumor markers and the next time i see him to know scan results & what I need to do next. Worry, worry, ... trying to let it go & live in the moment. And be grateful for life!

ElaineM · 12-08-2008, 12:08 PM

Gee. I am sorry to hear your news. I am not a drug expert, but I think Steph had some good ideas about the immune system. I don't know if naturopaths are licensed in your state, but I would go talk to one if they are. If they are not licensed in your state other medical professionals who specialize in integrative medicine or are health consultants may be licensed. I would add mushrooms to Steph's list. There is some excellent information available on the internet about building the immune system. You might also be able to get some information at your local library.
Do you think it is time to get a second opinion? No matter how good a doctor is that doctor may not know everything about the specialty he or she treats. Other medical professionals might have some good ideas or experiences with patients that might help you and your doctor.
Take care. Keep putting one foot in front of the other.
I am sending positive vibes your way.

Shobha · 12-08-2008, 12:48 PM

Pam, I too am sending a lot of positive vibes your way. Praying for you as well.

During my chemo, Ensure plus really helped build my immunity. I had a lot of mouth sores and could not really chew anything or even eat anything salty.

Best wishes and prayers,
shobha

ElaineM · 12-08-2008, 03:04 PM

I forgot to mention that some hospitals, cities or communities have nutritionists or dieticians who specialize in oncology. Maybe your doctor can refer you to one of them for help with your immune system.
Eating lots of vegetables and fruits may help too.

mikece · 12-28-2008, 11:06 PM

My wife has had good results from Gemzar/Herceptin/Avastin in treating her liver mets, pleural and pericardial effusions after Tykerb/Zeloda failed. The side effects have also not been too bad compared to previous chemos.

I hope you find a treatment that works soon.

Mike

Mary Anne in TX · 12-29-2008, 05:35 AM

Hi Pam! I know that you were to have more scans around the 19th or 20th of Dec. Did you have them? Did you get the results yet? Please let us know how you are doing and what treatment your onc helped you decide on.
Sending love, hugs, and many prayers to you, ma

Pam P · 12-29-2008, 06:12 AM

Wow! Thanks Mikece & Mary Anne for pulling up this older thread and sending your comments.

I was going to post again after Christmas and I guess it's officially after Christmas now, well unless you count the 12 days until Epiphany. I had a nice day at my house with my 2 sons, daughter-in-law & 2 grandbabies, Charlie 18 months & Alma 2 months. And my ex & his wife were also here. This is a new 'tradition' since Charlie was born. The ex & I do holidays together so we can all enjoy the little ones longer & they don't have to be dragged to different places. 10 yrs ago I wouldn't have said it would work. But it works just fine. All things are possible!

My pet scan -- basically stable!! Still bone mets all in the vertebra & ribs - some spots better, some spots maybe new or increased. Pleural effusion & pericardial fluid looks smaller. All in all my onc. said stable. He conferred with colleagues & they all agreed stay on the current treatment & check again in 3 months - and continue to monitor tumor markers. He said let's get as much time out of the current combo as possible. When it's time to switch he'll put me back on tykerb or herceptin with whatever else. I did ask to be taken off aredia & put back on zometa & he agreed.

For the 1st time the scan commented on "coronary & vascular calcification" & said it was new since last scan. After all my cardiac issues in Oct. That is really concerning me now. I see the cardiologist again early Feb. so will bring a copy of the report. I know avastin has caused the blood pressure issues & probably the pericardial fluid, but if the cardiologist thinks it could also cause the calcification then I will ask to be taken off it & change to taxol/tykerb right away.

I put the juicer in the basement to sell in a garage sale! It was too much monkey work to cut the fruit/vege small enough to get through the shoot (bigger juicers wouldn't have this problem) and took alot of stuff for the small amount of juice you got. But the biggest thing for me was all the waste of the peel, pulp, etc. that was disgarded - good for my compost, but I thought out go lots of fiber & nutrients in that ---- maybe just better to eat the whole food. Plus I guess I'm not so commited to the process. Oh well, I tried.

I hope everyone is enjoying some time with family, feeling well, and having a peaceful & joyful holiday. I pray for health & peace for us all in the new year. Pam

tricia keegan · 12-29-2008, 09:32 AM

Pam, just wanted to say congrats on the good scan results and hope that continue's into '09 for you!

I bought an expensive large juicer but find as you did, it just takes so long to actually make, then you really don't get a lot of juice for the amount of fruit that it was just too costly and time effective. Mine gather's dust on the shelf!

I really just wanted you to know though, that all that fiber etc you threw out can actually be used to make fruit flavoured breads, muffins, cakes etc...I received a book with my juicer and it has lots of ways this can be used and how beneficial it is. Maybe I'll start again as my new year resolution!