update on tykerb/herceptin combo
 

Well it's been a busy summer, with our water-skiing and we just got back from a cruise. We had an awesome excursion in the jungles of Puerto Vallarta, where the Arnold Schwartzenneger movie was filmed "predator"

We rode a speed boat from the dock, then a 4 wheel drive vehicle up bumpy roads, then mules to the top of the forest. We then went rappeling 120 ft down waterfalls, zip lining, hiking through rivers, crossed rivers on thin wires, etc. It was the best adventure ever.

At the end of 6 hours of active participation I was exhausted, but have awesome pictures from the adventure.

I had a pet/ct scan and everything looked great, the brain MRI is still looking good, so will continue the course for now as I have been.

Hey Esther - I am adding Herceptin to my Tykerb starting immediately - I am thrilled to hear you are having such good luck on it!

What fun and adventure, Esther! So glad you had a good summer.

Good luck, Brenda, on your new combo.

ALTTO trial Herceptin/Tykerb
 

Hello. I just joined this group today. I just finished
AC and will be starting the T part next week. I have been accepted to the ALTTO trial (Herceptin/Tykerb) and m waiting to be randomized. Is anyone else in this trial? Esther, I am very thankful for your good results with the Herceptin/Tykerb comb.

Esther-

You are awesome!

Lisa, I'm not on any trial, just taking the Tykerb and Herceptin together on my own. But it is a very doable manageable treatment combination for me. I am very glad that it is also apparently working for me.

I sometimes do get fatigue, but I just go with it and rest up. For the most part, I am able to do the things I enjoy without a problem.

Oops! that message was from me, I guess I forgot to register before posting the reply.

Do any of you have problems with insurance with the Herceptin and Tykerb combo since it hasn't yet been FDA approved? My onc seems reluctant.
Kathy T

I Have Aetna And Have Not Had A Problem. The Altto Trial Is The Clinical Trial For Herceptin/tykerb. The Details Can Be Found On The National Cancer Institute Web Site. Perhaps Your Oncologist Can Contact One Of The Nci Sites Which Is Participating In The Trial.

Robert Bazzell author HER2
 

I finished reading "HER2" over the weekend. I have always found sheer persisitence and tenacity, although not easy, is very important. If your oncologist seems reluctant, I would ask the person to please exlain their hesitancy and try and find a way to work together. I think about the women, who did whatever they had to ,to get Herceptin and they are a source of courage and strength.

kathy t., just remembered something. Aetna has a special patient advocate area. Perhaps your insurance company has the same thing. They might be able to work with your oncologist for approval.

Congratulations!!
 

Dear Esther:

It's so good to hear you are doing well. Puerto Vallarta is one of my favorite ports in Mexico. My husband and I are planning a Mexican Riviera Cruise next fall.

I will probably be on tykerb or gemzar as early as next week, the pet scan is clear, however the tumor on rt lung continues to grow, we're waiting on ca 2729 results to make a final decision as to which drug will be best for me. It appears to me from what I've been reading that Tykerb is an easy combo.

I'm praying for a good reading though.

Thanks for posting such great news.

Well, we discontinued my Xeloda 2 weeks ago, kept on with the Tykerb and on Wednesday I had my first Hercptin infusion (since suspending it 18 months ago to start Tykerb/Xeloda).

All is well except a noticible "droopy" feeling yesterday and now my bowels seem quite "activated" if you know what I mean. I hope it is just a short term SE, but just wondering if this is something you have experienced, Esther?

Can't answer about that but I am activated in the bowel dept. on tykerb and xeloda. Ceesun

I am on Tykerb and Herceptin now. Are the side affects cumulative or they will happen right away? I started 3 days ago.

Thanks,
Julie

Julie - let me know how the SEs go for you. You and I are just a few days apart on starting T/H. So far I got really bad diarrhea on day 2 after my infusion (I got my exercise running to the potty...), but immodium took care of it and now 3 days later that is normal. Also, I have been feeling FLAT out fatigued. Heavy, non-motivated fatigue. I have spurts of energy, but the last 5 days have been quite a bit "heavier and more zonked" than normal for me. I hope that it is just my body getting adjusted to the new combo and not a trend!

Herceptin always activates me too. And deactivates my energy level. It is better now (way better) than it was at first. Now I am only really tired after the triple and not the double. It passes in a few days.

Thanks for reminding me Flori - I didn't just get T/H the other day, I also got Zometa - so it was a triple punch (not like with Avastin, I'm sure, but there was another component). From this point forward I will only get Zometa every 3 months with that combo, so maybe next time it will be better...

Glad to hear it gets a little better over time!

Haven't written in a while, but read when I can. Found this line especially interesting as I've been taking Tykerb/Xeloda for the last 1 1/2 years and took Herceptin for a year before that (with cisplatin and taxol at the beginning). I've also taken Zometa for the last year and for a year back in '04/'05. Allergies to the cisplatin & taxol, but the rest didn't cause any real problems for me. In fact, I believe Tykerb is the reason I've been limited to only two lesions for brain mets... everything else has grown so fast and in such numbers that it's been unreal. I'm also very happy that several small lesions in the right apex of the lung are now invisible to PET and CT. I think Tykerb/Xeloda had lot to do with that as well. Had GammaKnife x2 for the brain mets starting in 07... #2 apparently worked on the Temporal Lobe tumor, but not on the right cerebellar. My team wanted Whole Brain Radiation, but it seemed like the "end of the sentence" to me, so I chose craniotomy on the cerebellar lesion only. Had surgery on 8/08. It hasn't been as bad as I expected, though I'm walking around like I'm drunk - I think I need the drinks to go with it so I can at least have some fun! Meanwhile, I need advice for me. My only active spot for now appears to be the right internal mammary artery (PET x 2). If it is active next month my oncologist will start Herceptin again, and we have discussed CyberKnife. My question: is it time, instead, to have the second mastectomy and immediately have reconstruction on both sides? I've found an excellent surgeon for free DIEP and my back has been very vocal about hating mastectomies. Any experience or suggestions would really be great. Thanks!
Rentrac

Tykerb question
 

Hi Brenda:


I will start taking Tykerb this week.
Have you had any serious side effects?

Please respond.

Thank you.


Adriana