Diagnosed with recurrence today

Julie2 · 08-14-2007, 06:12 PM

I got the news which I didn't want to get since three years. My PET scan showed recurrence to my lymph nodes in the sternum and some nodes in the lung. I just stopped Herceptin two months ago as I finished two years of it.
My onc. gave me the following options:

1. Herceptin alone for 6 weeks and repeat the scan (I am tense about this)

2. Herceptin + Taxol or Abraxane

3. Herceptin + Navalbine

4. Tykerib + abraxane

5. Tykerib + xeloda

I am not sure whether I had progression while on Herceptin or after stopping it(my Her2 serum slightley elevated(7.5 to 10.1) just before my last Herceptin infusion.

Eventhough I got complete response to Taxol in my neoadjuvant setting when I was first diagnosed, my small kids( 6 and 3 years) will be distressed seeing me loosing hair.

I am leaning towards Navalbine+Herceptin. Do you think it is a good option?

I just want to get rid of this at this time, I have to raise my kids till they need me.

Do you think tykerib is a good option? I am also nervous about this.

Please let me know your suggestions. Plese help me.

Thanks,
Julie

Colleen007 · 08-14-2007, 07:04 PM

Hi Julie,

My September '06 PET scan also showed progression in my mediastinum/sternum area. The Navelbine worked it's magic in 3 months...of course, once I went off the Navelbine, it came back to the same area, so I have recently re-started the Navelbine so that it can work it's magic again. I have a 22 month old and a 7 year old, so I am also trying to do whatever I can to be around for as long as I can. I told my 7 year old that I may have to take "medicine" that would make my hair fall out again if the Navelbine didn't work this time and he said, "That's okay, Mom. I just want you living here with us and I'd rather have you here with no hair than in heaven". My oncologist does not think that Herceptin has failed us at this point and is still "saving" Tykerb/Xeloda for later.

Good luck with whatever you decide. I find Navelbine to be very tolerable and have been living a pretty full life while on it (of course, everything has to be scheduled around the 3 weeks on/1 week off, but we have learned to live by that schedule).

Colleen

ita · 08-14-2007, 07:20 PM

Dear Julie,

Although I do not have an answer for you I would like to send you a big cyber-HUG. For some reason I feel compelled to write to you and let you know that when you hurt, we all hurt. I truly feel as if this is also hapenning to me too. There are a great group of people here that will give you their best advice. Many positive thoughts and prayers coming your way.

SIncerely,
Ita

SusanC · 08-14-2007, 07:40 PM

Hi Julie,
I just read your post. I wish I could help you with your decision. I will pray that you get the guidance you need. I feel like Ita, you hurt...we all hurt. We are in this together.
Sincerely,
Susan C.

carykim · 08-14-2007, 08:56 PM

Julie--

I'm so sorry to hear your news. I hope you get an answer from some of the more experienced ladies soon on which treatment to go with.

Thinking of you and your family tonight and sending you strength to go back and fight the beast again with everything you've got!

xo
Cary

Sherryg683 · 08-14-2007, 09:16 PM

Personally, I would save the Tykerb for later. I'd probably go with the Herceptin/Navelbine combo and watch it carefully. Then if it's not working go with some of the harsher stuff. Taxotere, Herceptin and Xeloda worked for my lung mets but took it's tole on my body...sherryg683

lexigirl · 08-14-2007, 09:20 PM

Dear Julie,

I am so sorry to read about your recurrence. I want you to know that you will be in my prayers for complete healing to your body. You will kick this cancer to the curb again!

Hugs and Prayers,
Lexi

hutchibk · 08-14-2007, 09:26 PM

Hi - that was the same diagnosis I got when I learned of my first recurrance. At that time, I had not been on any Herceptin, so we did Carbo/Taxol/Herceptin every 3 weeks for 7 cycles. It knocked out my 4 lung mets and 3 media stinal (chest) node mets completely at that time. I then stayed on Herceptin for six months when we found that 2 of the same media stinal nodes were shining again on PET, so we added Taxol back in every 3 weeks for 7 more cycles. That knocked them out again and we haven't seen them again. The next recurrance 6 months later was brain mets and a bone spot in the neck, which we are dealing with now with Tykerb/Xeloda.

tousled1 · 08-14-2007, 09:53 PM

Julie,

I'm so sorry to hear your news. Making a decision about treatment is always difficult as you don't want your quality of life disrupted especially when you have small children. I just recently developed mets and am on Herceptin/Taxol/Carboplatin. I don't know if it's working yet as I won't be scanned for another 8 weeks. I don't think that you have developed a resistance to Herceptin and I would probably want to save the Tykerb for later, if needed. Whatever decision you make I hope the treatment brings you back to NED.

hutchibk · 08-14-2007, 09:59 PM

I think my onc suggested to me last year that our cancer is more likely to develop a resistance to each chemo long before it is inclined to become resistant to the mono-clonals... and we have always suspected that Herceptin packs a more powerful punch in conjunction with chemo than on it's own...

Julie2 · 08-15-2007, 09:10 AM

Thanks for the replies. They are very important in making a decision. Anybody is successful(complete remission without recurring again) with Herceptin+Taxol or Herceptin+Navalbine? Which one is more powerfull? I just want to knock this out now. Please let me know your experiences.

Thanks,
Julie

Adriana Mangus · 08-15-2007, 10:05 AM

Dear Julie:

I'm on my second line of treatment with this combination and so far it has worked for me. I will be on it for about six months, already the number has gone down from 54 in May to 28 in July. The side effects are minimum, just a little bit of extra pounds, no big deal, tolerable, and like our sisters on the site have said, you just have to work around the schedule.

I receive treatment as follows:

Week 1 Navelbine+Herceptin
Week 2 Navelbine
Week 3 Navelbine+Herceptin
Week 4 Off

I did a little of homework on the internet prior to settling with this treatment and everything pointed to a very effective, tolerable, easy to administrer therapy.

Anything you choose, it will work, have faith that the Lord knows your needs and believe in his healing powers.

Good luck Julie, sending you positive vibes and a big HUG!!

Much Love to you and your family....

Sheila · 08-15-2007, 10:39 AM

Julie
Like others have said, I would save the Tykerb for "if all else doesn't work." Sometimes the Herceptin needs that chemo boost to get rid of the mets.. Xeloda kept mine in check for a year, then I needed something different...right now I am on :
Week1 Herceptin Taxol
Week2 Taxol
Week3 Herceptin Taxol
Week4 Off

I was getting Avastin also, but I am off it for the time being...everyone is different and what works on 1 dosen't always work on another...you can keep trying till you get the magic one.
My friend did not have results for mets to the nodes by using Abraxane/Herceptin, yet I have had great results on Taxol/Herceptin...My friend is now on Navelbine/Herceptin with much improvement...
Just to let you know there are options for you to kick the mets...
Sending a big hug...the decision is the hardest part!

rentrac · 08-15-2007, 05:43 PM

Dear Julie,
I sure do remember the first time I learned I had a recurrence. My heart goes to you. Don't hesitate to get a second opinion. I know that one of my second opinions ended up saving me from brain surgery! I found that just hearing from a different group of experts helps me understand and feel more comfortable that I've made an informed decision. Meanwhile, I've tried to keep the family laughing about the cancer stuff as much as possible. My 11 year old has been living with this since 2nd grade, so she had a blast last year when I lost my hair, again, and she got to draw all over my head!
Warm hugs,
Rentrac

BonnieR · 08-15-2007, 08:19 PM

Julie, you really touched me when you said "please help me." We all know how it feels to say that. I think the suggestion of a second opinion is a good one. Someone to talk to and help weigh the pros and cons. I recently read an article on asking for God's guidance. And how the answers often come from other people, coincidences, doors being opened or doors being closed...We have to be open to the signposts along the route. It sounds vague, but I know in my recent indecision, enough people got put in my path at the right time, and more information presented itself that I finally felt comfortable making my choice. And accepting it...

Vanessa · 08-16-2007, 08:52 PM

Sorry to hear about your reoccurance. I had a reoccurance to the lymph nodes a little over 3 months ago, my onc. added taxotere to my herceptin. After having a petscan, she notice a slight progression, so she switched me to abraxane with herceptin. Navelbine is a choice she is considering if this doesn't work. She is also holding off on tykerb for a while. I don't know anything about navelbine, so I can't comment on that, but I do hope that whatever tx you chose works for you. Best wishes.

sherri · 08-19-2007, 12:44 PM

Hi Julie,
I think you did the Vaccine Trial at UW. Did they know about this, have you talked to Dr. Salazar, have you sent the sample for them? Please let me know and you are in my thoughts and I hope you will be NED soon.
Big hug,

Julie2 · 08-19-2007, 02:29 PM

Sherri,

Yes, I did the same vaccine(DNA) trial as you in UW. I don't think I got an immune response to the vaccine. I just sent a mail to Doreen(RN) about my recurrence. Also I didn't get a biopsy of the recurrence to send to them. I hope they have some help to offer.

Thanks,
Julie

sherri · 08-20-2007, 03:45 PM

Julie,

I'm sure they will help you, try to talk to Dr. Salazar and get her opinion about which drug to use.
Let us know what happens, I'm sure you will be NED again soon.
Much love,