Lung Mets! It Just Doesn't Want To Stop!

[KDR]

Had my PET/CT today, and just eight weeks after my liver ablation that wiped the slate clean, HER2 is back in my liver in a very weird shape (that cannot be ablated), and I have some new intruders...lung mets! So, back on chemo. Really??

Can I hear from someone who has been on the trial for Temsirolimus + Neratinib, anyone who had a long run with Navelbine (did you tolerate it well), or Gemzar?

Well, a nice run with Perjeta and Herceptin, but it was only...about seven months.

It's been a long day--

Thank you,
Karen

[KristinSchwick]

Sorry no experience to relate to the drugs, but I just wanted to say that I am praying for a good therapy option to present itself. God bless,

[Cat]

I wish I could help with chemo input but all I can say is I wish you great results with whatever direction you go. So sorry the PET came back with unwanted results. Stay strong, prayers and hugs. Cathy

[Catherine]

Thinking of you. Sorry I have no wisdom to share. Just sending love and good vibes

[BonnieR]

Another buddy here, stepping into your corner to offer support and love
Keep the faith, always

[StephN]

Put that Genie back in the bottle!

I can only speak to Navelbine. I had it weekly with Taxol and Herceptin. You know my result. I had to slap the cancer down HARD! Some here have done well with Navelbine and Herceptin.

Hope someone on that trial will chime in.

[CarolineC]

Oh nooooooo. Karen I'm so so sorry that you are dealing with this. I don't have any knowledge of T + N or experience with Navelbine, I know Coolbreeze had Gemzar, but what about going back to Xeloda? How effective was that for you? I remember seeing it as a treatment for Sherryg683.

Are they sure it's cancer in the lungs or could it be an aftereffect of TDM1? Doesn't that cause lung inflammation? Are you taking any other medication that could cause liver problems? Geez.

I'm wrapping you in a huge hug.

Love,

Caroline

[Pamelamary]

Oh Karen,
So sorry to hear this! I also have no advice or experience to offer in regard to those treatments, but hope you and your docs can quickly work out a plan. Will be thinking of you with all digits crossed..... Pam

[michka]

Dear Karen, I am so sorry to read about your Pet. I was hoping the ablation would keep you Ned. I hate cancer.
I know Mamacaze did very well with Navelbine and Herceptin. She had mets to lungs and liver. Kept her Ned for years. Look at her signature.
I am sending cyber hugs accross the ocean.
Michka

[Bunty]

Sorry Karen to read your post - I don't have experience of those drugs, but you definitely still have options there, and from some of the replies already here, it certainly sounds hopeful. Mets be gone please!!!
Cheers Marie

[Jackie07]

Novelbine (Vinorelbine) is the drug to use for lung cancer. Hope it will do the job for you.

Zhongguo Fei Ai Za Zhi. 2014 Feb 20;17(2):148-54. doi: 10.3779/j.issn.1009-3419.2014.02.14.
[The Effect and Mechanism of Vinorelbine on Cisplatin Resistance 
of Human Lung Cancer Cell Line A549/DDP].
[Article in Chinese]
Qi C1, Gao S2, Li H3, Gao W4.
Author information
Abstractin English, Chinese
Background and objective Drug resistance is a major obstacle on lung cancer treatment and Vinorelbine is an effective drug to inhibition of tumor proliferation and metastasis. In this study, we investigated the effect and mechanism of Vinorelbine on reversing the cisplatin resistance of human lung cancer A549/DDP cell line. Methods With 1 μmol/L and 5 μmol/L Vinorelbine treatment, MTS assay was employed to determine the effect of the cisplatin sensitivity of tumor cells, flow cytometry to determine the apoptosis rate and change of Rh-123 content; Western blot to determine the expression of MDR1, Bcl-2, surviving, PTEN, caspase-3/8 and phosphorylation level of Akt (p-Akt); Real-time PCR was to determine the mRNA expression of MDR1, Bcl-2, survivin and PTEN. Finally the transcriptional activities of NF-κB, Twist and Snail were determined by reporter gene system. Results With 1 μmol/L and 5 μmol/L Vinorelbine treatment, the sensitivity of cancer cells to cisplatin was increased by 1.91- and 2.54- folds respectively, flow cytometry showed that the content of Rh-123 was elevated 1.93- and 2.95- folds and apoptosis rate was increased 2.25- and 3.82- folds, Western blot showed that the expression of multidrug resistance related proteins MDR, Bcl-2 and survivin were downregulated, caspase-3/8 and PTEN was upregulated, phosphorylation of Akt was downregulated as well, real-time assay showed that the mRNA expression of MDR1 was downregulated 43.5% and 25.8%, Bcl-2 was downregulated 57.3% and 34.1%, survivin was downregulated 37.6% and 12.4%, PTEN was upregulated 183.4% and 154.2%, the transcriptional activities of NF-κB was downregulated 53.2% and 34.5%, Twist was downregulated 61.4% and 33.5%, and Snail was downregulated 57.8% and 18.7%. Conclusion Vinorelbine treatment led to increase of cisplatin sensitivity of A549/DDP cells and the mechanisms included the regulation of PTEN/AKT/NF-κB signal pathway to decreased drug resistance gene expression and increased pro-apoptosis gene expression.

[Laurel]

No, no, no! Karen, I wish I could kick the snot out of that crap that keeps invading your life. Someone here had a good run with navelbine, but it was a few years ago and I just cannot summon the name to mind. I will keep thinking. In the meantime, I will pop you into my prayer journal for a new treatment that leads you to NED.

[yanyan]

Hi Karen I'm on reduced dose abraxane/gemzar with herceptin and tykerb. I asked about navelbine with herceptin as I really didn't want to be bald again. My doctor said they are doing the best for me. Well, I had problems with low platelets in the 1st cycle that caused nose bleeding constantly. Since I started drinking wheatgrass powder juice, they have kept up very well with my 2nd round. The worst complain from gemzar is low platelets, other than that nothing too bad. I hope everything works out for you!!

['lizbeth]

Karen,

What did your genomic sequencing show about your cancer? Anything unique that can be used to the battle against these pesky mets?

[KDR]

So, Temsirolimus and Neratinib it is. Starting tomorrow. This is a trial going into Phase III and is showing tremendous efficacy for HER2 breast cancer. We decided on this after great discussion of comparative therapies. There was ONE slot left, and my oncologist was able to secure it for me. At this point, I need systemic therapy.

With this cocktail, the most severe and expected side effect is diarrhea. Guaranteed. Medication is provided. The TEM is given weekly, via infusion. The NER comes in pill form, and six per day are taken.

So, as luck would have it, I got the spot for this new promising combo, but all the others are there if necessary.

My genomic sequencing yielded many clinical trials to participate in. My doctor felt this was the absolute best possible treatment in consideration of the data gathered thus far.

Here I go...

Thanks, everyone!

[BonnieR]

Off you go, we've got your back!
Keep the faith

['lizbeth]

Wow, I think the universe was holding that last spot for you!

Best wishes for a very successful treatment and minimal side effects.

Please keep us posted.

[StephN]

You will be Swinging with NED shortly! If your doctor is that gung ho on this, then we will send support in many forms for the desired outcome.

You may want to start a new thread with the trial drugs in the title.

[debsing]

Gosh KDR, I sure know the perjeta/herceptin disappointment- it was my first chemo and did me proud until two months after the taxotere was dropped.. I wish you success with your next treatment

[KDR]

Good idea, Steph.
Thank you, everybody. Your support and kind words mean so much. The news was a game changer. A bit of cold water, if you will. But I'm marching on. I am very tired and mistakenly said I was starting tomorrow. I'm not. I'm starting Friday.

Now, have to search my iPod music library for the most serious ass-kicking song I can find. And listen, listen, listen.

Love
Karen

[sassy]

Get those kickin' boots on girl!

Praying for good response.

[Ceesun]

Karen, Just wanted to chime in and wish you all the best with this new treatment plan. Cathy

[Coux92]

Love and best wishes to you Karen, I sure agree, that spot in the trial was there just for you! It's a sign.

[Andrea Barnett Budin]

Love you, Karen! Two drugs my brain can't process, but sounds like your "song" to me.

I'll call them TN, which in my head means TOUGH NOOGIES...!!!!!!! Take that you sneaky mets. Get the heck out of Karen's life!

Keep thinking -- TOUGH NOOGIES WILL BE MY MAGIC BULLET!!! Send that message to your body, and to the Universe.

And keep singing.

XOXOXO
ANDI

I typed this with colors. What's up with this new impossibility???

[Pray]

Plenty of hopes and prayers headed your way. Gods blessings to you and your family!

[waterdreamer]

When I originally had lung mets Taxotere and herceptin knocked them out completely. I did try Navelbine, but my neutrophils were badly affected. I know my doctor has a clinical trial which I would go on, if my end of month scans show progression, and it is Xeloda, with neratanib or with lapatanib. Good luck, this is gruelling but if anyone can do it, it is you.
Sending healing wishes and love

[michka]

Karen, thinking of you. How did it go Friday? I hope it was easy and that you are feeling good today. Love. Michka

[KDR]

Hi, Michka and all,
Yes! I started yesterday. 50 mg. Benadryl to start. Reminded me of the good old days on Taxol. Totally looped, but didn't sleep. In comes the new drug. I wanted to take a picture of the bag, but it was wrapped in brown plastic. Huh? It can't be exposed to sunlight! All went well, and I went home. Slept off a few hours, and then took the six Neratinib pills. So far, nothing but tired. But I know, Immodium is the "third" drug in this protocol. I know my future...: )
I also spent time with a friend at the clinic. She'd been on this trial for 1.5 years. Good going! Especially since it seems Herceptin and Perjeta need another very strong drug with it to work on me for any length of time. So, I will keep you all posted, and as Steph suggested, I may start a thread with the drug names for those interested.
Thank you, everyone, for your warm wishes.
Warmly,
Karen

[Lisalou]

So glad to hear first round went well. Warm wishes, healing energy and prayers being sent to you
lisa

[BonnieR]

Leave it to you, our trouper, for wanting to take a picture of the chemo bag! That's the kind of thing only another one of us would find entertaining!
Keep the faith

[michka]

Hi Karen, sorry you have to be on Benadryl again and Immodium. I hope the side effects will be minimum and that you will dance with Ned very soon. I believe in these very personalized treatments. Stay strong. Michka

[JillaryJill]

Good luck to you Karen.

[KsGal]

Thinking of you Karen, and sending lots of prayers.

[JennyB]

Good Luck Karen I sincerely hope this combo gets you back to NED for a long time.

Jenny x

[Carol Ann]

Hi Karen,

Just wanted you to know I am thinking of you and rooting for you! Hoping the side effects this time aren't too bad.

Carol Ann

[LeahM]

Karen I have been following this thread and praying hard. I am sorry I haven't chimed in till now. Know that I am always in your corner.

Leah