It's Not Working! Three Weeks Of Nothing But Side Effects!
 

Scrap the Temsirolimus and Neratinib! Already!
Three weeks into the game, and enduring the horrible side effects, apparently it is over! CEA started creeping up first week, then by 10 second week, another 10 in third week. At first, my oncologist was willing to put the rise on intestinal inflammation (Immodium/Lomotil are the other "drugs"). But, now with the two big jumps in my ever-accurate marker, CEA, it's over.
She's thinking Doxil. I'd like a kinder, gentler med that will take me down the road. Please, if you can conjure up some thoughts, we'll be making a decision this week. Bear in mind I am HER2+++, high grade, poorly differentiated, somewhat ER/PR positive.

Thanks,
Karen

Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
 

Hi Karen, no advice but I just wanted you to know I am praying and rooting for you.

Carol Ann

Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
 

Hi Karen, sorry, I too have no suggestions, but hope you get some good advice. Big hugs xo

Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
 

Another person with no advice, just good thoughts sent your way
Keep the faith. You always have

Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
 

Hi Karen. I am so sorry the new treatment did not work. I was hoping so much that your very personalized approach would be rewarded.

Just trying to think. I know you have neuropathy from Taxol.
However, when I read your profile I see that you had Taxol and Herceptin but not TCH at the start. It worked. Then when you started TDM1 you had it with Taxol again and it worked. I am wondering if it is not the Taxol that worked when you had the Taxol/TDM1/Perjeta combo. Is there a combo where you could add a taxane, maybe Abraxane this time. This may be stupid because I am not an onc. and it may just not be possible because of the Taxol damage.

Your onc is thinking about Doxil. I figure in a combo? Is it your genomic sequencing that lead her to think of it?

I hope some brilliant minds will come in with suggestions. You deserve to find the right weapon. Stay strong. Sending hugs. Michka

Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
 

Karen,

Noticed this line in your signature: Genomic sequencing completed for future treatments, if necessary.

I'm certain your doctor will have a good idea what to do next based on the Genomic sequencing result.

Sending you good vibes.

Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
 

Praying...keep us posted.

:-) Penny

Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
 

Karen

You say you are somewhat ER positive. After all these "anti HER2" treatments, maybe you are a lot more positive. Have you tried anything for ER? Maybe adding in something like that will help - maybe even help alot. Maybe its those cells that were the survivors thru all this.

What about Havolen? Just thinking out loud here. But Doxil or AC is also a good choice but you cannot receive Herceptin concurently with those because together the potential heart issues increases.

Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
 

Thinking about you. Sending you hugs and prayers for a quick solution that works. Wish I had more to give.
Cathy

Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
 

Sorry Karen that this is not working for you. My daughter who is also highly her2 and slightly hormone positive as you are, was looking to this new treatment as a possible next step if she would progress.
Right now the PET shows only activity in the supra-clavicle lymph node. She is doing Abraxine weekly now but continues with the every three weeks Herceptin total body treatment and every week Herceptin IT.
My daughter did not want to go to the Abraxine but it has shrunk the node with the last PET showing no activity except in the node.
Hope you find something that works.

Ev

Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
 

Oh Karen I am so sorry to hear this. Much love and prayers coming your way

Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
 

Karen, Also I would recommend getting a biopsy to determine if the status of the cancer has changed. My daughter is thinking of getting a biopsy of her lymph node to ascertain if the hormone status has increased or she might be less her2.
The targeted drugs she thought would work for her - such as perjeta and kadcyla did NOT work for her. So maybe things have changed.
Ev

Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
 

I'm a noob so no real advice here other than you are in my prayers.

I do like the biopsy suggestion from ev if you don't have a recent one. My onc loves to biopsy mets.....Good to know thine enemy approach...

Best to you during this transition in treatment.

Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
 

Thanks, everyone. I was on Arimidex, Perjeta and Herceptin before the trial.

We have a biopsy from January, pre and post ablation.

There have been changes in the makeup, with some cells strongly HER2 and some not.

Slowly, gathering information, from all of you, and the guidance is appreciated and necessary. BY THE WAY, PLEASE do NOT think the trial will NOT work for YOU (Temsirolimus/Neratinib). I have gotten PMs about this. One of my friends with extensive mets did it for 16 months. It COULD work for you, don't base your decisions on my experience. Go into it believing it IS for you. It has a better response rate than T-DM1 and is similar in that it either works or doesn't.

We have the genomic sequencing and will be discussing further, using that information with the biopsy information.

Thank you for supporting me and sending love and best wishes when I'm trapped in a corner.

Love
Karen

Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
 

Best wishes Karen. Xxx

Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
 

Karen,

I'm very sorry to hear this! STUPID cancer!!!

I noticed that you haven't tried any of the platinum drugs, as in carboplatin. Some oncologists have replaced Adriamycin with Carboplatin, due to A's known potential cardiac toxicity. They use TCH, or taxotere, Carboplatin and Herceptin.

Here's a metastatic HER2+ trial in Italy that's using Carboplatin:
http://clinicaltrials.gov/ct2/show/N...static&rank=74

Here are some other trials for HER2+ advanced bc. Some of them are not in our area, but since you go to MSKCC, you might be able to enroll in them anyway via various arrangement. Also, some of these trials are phase 1, or dose escalation trials. But that's not necessary bad, since H started that way at some point. Also, those trials also look at efficacy, and your onc would be able to give you input. Also, sometimes an onc may use an FDA-approved, even if it was approved for some other cancer or something else. Hence, survivors taking metformin, etc.

Ruxolitinib, which is already FDA approved for myelofibrosis. The trial is at Columbia U Medical Center. They're not yet recruiting, but the drug is already FDA approved. It's just a matter of whether is will work for advanced, HER2 bc.
http://clinicaltrials.gov/ct2/show/N...astatic&rank=3

PD-0332991. This drug made a big splash at ASCO last year based on a trial for solid tumors. The drug is a CDK 4/6 checkpoint inhibitor. The trial includes Kadcyla. U Penn. They are not recruiting yet, but you could find out when they might be. It could be close.
http://clinicaltrials.gov/ct2/show/N...static&rank=99

City of Hope. Paclitaxel albumin-stabilized nanoparticle formulation.
http://clinicaltrials.gov/ct2/show/N...static&rank=44

Entinostat. Some sort of inhibitor. MD Andersen.
http://clinicaltrials.gov/ct2/show/N...static&rank=77

BYL719 with Kadcyla. A kinase inhibitor. Northwestern.
http://clinicaltrials.gov/ct2/show/N...static&rank=79

LJM716. HER3 antibody that is a AKT inhibitor. Mass General.
http://clinicaltrials.gov/ct2/show/N...tatic&rank=100

ONT-380 with capecitabine and/or trastuzumab. Several U.S. locations.
http://clinicaltrials.gov/ct2/show/N...tatic&rank=100

ONT-380 with Kadcyla.
http://www.clinicaltrials.gov/ct2/sh...+Cancer&rank=1

ganetespib (see modi)
http://clinicaltrials.gov/ct2/show/N...ve%22&rank=128

another ganetespib study
http://clinicaltrials.gov/ct2/show/N...ve%22&rank=193

BIBW 2992 (afatinib). Phase 3. This trial is ongoing, but not recruiting. However, the FDA already approved the drug as Gilotrif for the treatment of NSCLC. It's a TKI that I believe addresses EGFR mutations. The drug is put out by Boehringer Ingelheim. We met with them two years ago at SABCS, but they seemed more interested in having us get out the word then wanting input from HER2+ mets survivors!
http://clinicaltrials.gov/ct2/show/N...ve%22&rank=132

Irinotecan. UCSF. I know somebody who's onc is giving her this drug for mets. She's doing pretty well. She's not HER2+.
http://clinicaltrials.gov/ct2/show/N...ve%22&rank=152

212 Pb-TCMC-Trastuzumab Radio Immunotherapy. University of Birmingham and UCSD. Mimicking Kadcyla ... sort of.
http://clinicaltrials.gov/ct2/show/N...ve%22&rank=203

Agatolimod and Herceptin. Stimulating the immune system. Ohio State U.
http://clinicaltrials.gov/ct2/show/N...ve%22&rank=155

Hang in there. You have options!!

Joan
xoxo

Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
 

Karen,

After reviewing your signature I was thinking along the lines that Michka has suggested. Looks like you have missed out on Carboplatin and the Anthracyclines, both of which can kick Her2's butt. Like Michka, I was noting that Taxol appears to have been a friend to you with the exception of the neuropathy. None of the drugs I have suggested are easy, so I really hate throwing them into the ring, but they do work. Haleven is not an easy one either, but has knocked Her2 on its ass as well.

I am praying you find a combo that is perfect for you. I remain so sorry that you are having to deal with this again.

Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
 

I too am hoping and praying for you And your family that your drs. come up with the right combo for you. His peace my friend��

Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
 

Sorry to hear your news, Karen. No advice, but love and best wishes from Australia.... Pam

Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
 

Praying for you! ! I too had three months of misery with no results...with Perjeta.. Tumor markers continued to decrease so thought it was working. After third treatment, MRI indicated tumor had continued to grow....now 1/3 larger (size of small lemon in node just above pelvic area) identified last October 2013. Three months of real misery...hair loss and all that goes along with it....Then in February and March...changed regime to Kadcyla infusions... Third infusion next week.... Minimal side affects as Kadcyla kills only the cancer cells....leaves the healthy ones alone. Hair growing back...but feel tired most of the time.
Diagnosed 9 years ago..breast cancer Hr2... reocured five years later with cancer in broken shoulder, sternum, rib in back, lower spine and Adrenal Glands (located top of kidneys). . All stable with Tykerb and Xelota oral chemo for following year. Reocurrence finally identified with very accurate tumor markers. No symptoms ...
Has anyone out there been on Kadcyla?
Praying for good results for you and praying for strength to handle whatever the good Lord sends my way........depression is so difficult to overcome.....

Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
 

Karen, Just want to chime in with prayers and good wishes as well. I am currently on kadcyla. Cathy

Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
 

Karen,

If I were you I would get back on Herceptin ASAP with a reloading dose at least until something else is decided. You seem to do very well when you are on a weekly dose-can you have that again? I really believe that we don’t become resisitant to Herceptin but possibly need more of it or more often just as Gina Popp has written about and I know the first time I had a reloading dose last fall I felt so much better and my TMs dropped at the one week mark. Yes, they rose before the next treatment, but not as much as previously. Wish I could have kept trying that option. If the higher dose or weekly options aren't a possibility then maybe it’s time to try Taxoterrible, Xeloda or go back to Navelbine but at a lower dose. What about TDM1 and Pertuzumab again?

I know you like to look at all options so here is some thinking outside of the box, because conventional doctors do not recognize the impact on our adrenals, and each one of us has adrenal fatigue to some degree. Your body is in a state of distress and inflammation and it needs to be calmed. What about beta blockers? They are systemic and address the adrenaline receptors. Get your hormone levels checked more by saliva than by blood because saliva testing is more accurate and with a four point cortisol to see what your body is doing at certain times of the day. What has your blood sugar been like, and your thyroid? Everybody keeps focussing on the cancer and the characteristics of it and not the whole body. It’s time to get really analytical and find what is right for you in an integrative way and I know you have been doing that to some degree.Are you taking any other meds, foods, or herbs that could be antagonizing your liver?

I really wonder whether the liver is an actual met or severe inflammation since Neratinib can cause liver toxicity. You say your LFTs are optimal, has there been a change in them since starting Neratinib? What about hyperthermia?

Karen I so agree that chemo is not the only answer and our bodies need to have a break in order to heal so it would be great to utilize more targeted therapies or immunotherapy.

Visualize all of us in a circle holding each other’s hands and taking the positive healing energy with our left hand and passing it with our right. My support group does that every week and it is so comforting. I'm giving you a huge hug!

Love,

Caroline

Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
 

My thyroid is OUT OF CONTROL! I have been euthyroid (hypothyroid via radioactive iodine) for 12 years. I just asked to have the numbers checked and got results on Friday: TSH is 23!! Should be no higher than 4 something. In fact, they are all out whack: T3, T4, everything!
Inflammation is a real thing--I am sooo inflamed.
I am gathering all information and if I don't get to each of you right now to say thank you, I'll do a group THANK YOU. It's all so tiring!
Keep the information coming-
Karen

Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
 

Just chiming in with all and most especially Caroline, cause I agree with everything she posted!

So right that don't just focus on the cancer, Caroline. Whole body. Thyroid. Oh dear. Karen, this needs immediate attention.

My Wobenzym helps with inflammatory (bathroom drama) big time. I take 2 A//PM. Also an immune booster!

But your TSH and T3 and T4 are way off, as you know. Needs immediate addressing.

Adrenals are shot w/every one of us no doubt.

Caroline, what do you do with adrenal fatigue?

Group hug, passing healing energy in from the left hand and out through the right hand... Love that.

Visualize.

Meditate.

Breathe. Gently in. Hold. Gently out.

KNOWINGS, Expectations and Assumptions - HER2 Support Group Forums

I meditate daily. The gentle breathing in of life-affirming air through my nostrils, holding it -- as I consciously connect with The Present Moment -- and then releasing the air slowly through my pursed lips, blowing it and all that is negative and toxic away from me, kissing it goodbye -- incredibly freeing. Focusing on the intake, the holding and the letting go is key.

I follow this breathing (after 5 or 10 minutes) with my vivid memory of one of the most beautiful sights I literally danced in when I was 15 years old, in the Catskills. A gorgeous garden of Eden midst thick woods. Difficult to get to, but then WOW! I recall the sound of the birds chirping, tweeting, trilling. The sound of my hand moving back and forth in the pond as I knelt in the green grass, stroking the water. The blueness of the sky, the glorious brightness of the sunshine, the colors of the wildflowers, the reflection of the tall think trees in the pond is remembered and revelled in.

Then I envision myself far into the future at a family celebration. I see myself there, smiling and laughing, clapping my hands. There is music and everyone is swaying and full of happiness. All that this daily ritual instills in me, stays with me throughout the day and bringst me immense and utter joy and tranquility! It is all an affirmation of the reality of my wish becoming fulfilled...

This is what I wish for you, Karen. And ALL of you!! With all my heart!

ANDI

Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
 

Hi Karen,

Thinking of you, just wanted to let you know I still think your best bets are either AVX901 vaccine trial at Duke, or Herceptin plus Abraxane and Everolimus (my doctor says it helps Herceptin be more effective). If I get more info I will share with you here or by text.
Sending lots of love
Fern
PS I have just discovered that my daughter has an arachnoid cyst that will probably require opening up her skull to drain the cyst. SO doing a lot of research for her.....

Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
 

Fern-I saw that on FB. You have a lot of good information coming in from the good people around you. I will be watching. You have been amazing to me.
Andi, on it. This could explain a lot of things (thyroid). Because if this regimen IS working, and I could keep the D under control, it would be very doable.
Phil, I am calling your suggestion tomorrow. I will let you know.
Caroline, thank you so much, you are spot on, really. Remarkable insight.
Cathy-See Sun.
Everyone, I will keep you updated this week and thank you for your love. I totally feel it. I am so happy to be in your company.
Love
Karen

Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
 

Karen, I have no advice, but know that I am thinking of you and praying for you.

all the best
caya

Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
 

Keep the faith Karen, as Bonnie says. You will be in my prayers.

Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
 

Hi Karen,

Sorry to hear this crap!!

I have to agree with Becky, something for the hormone receptor positive you have, it may just do the trick.

Anything else you can do based on the genomic sequencing?

Thinking of you and sending you love and a BIG Hug.

Adriana

Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
 

Hang on, everyone. The CEA was designed to measure intestinal/colon inflammation. Other markers down. Could it be? Its...just...that?

A VIP checked in with me today and I know with their help, we are coming up with a great solution, or may realize this is working, I'm not sure. We won't know till we know. The CEA has always been a tracker for me. But the sensitivity it has for GI issues may be measuring just that...? Let's hope...

Love
Karen

Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
 

OH Karen, I hope so!! Keeping my fingers crossed ... I KNOW there is an answer and you'll find it!!

Holding every good thought out there for you!

Ok, maybe this isn't the time ... but I LOVE your avatar!! :)

Carol Ann

Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
 

So if the HER+ cells are gone, are you triple negative? If not are you ER+ or PR+. Drugs that take out just HER+ cells are not working on ER+ or PR+ lesions. I know you well enough that you will work with others to resolve this. Never Give up! I hate to lose! Do it for yourself and do it to see your 10 year old daughter walk down the aisle at her marriage.

Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
 

Karen,

I AM HOPING RIGHT ALONG WITH YOU! CEA = bowel inflammation AND NOTHING MORE!!!!!

Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
 

Hoping along with you Karen. I don't have any doubt that you will get to the bottom of this.... No pun intended.

Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
 

CEA = bowel inflammation. Works for me!

How's your CA 27.29??? Curious.

You will see Yasmin graduate high school -- and walk her down the aisle when she gets married, and be a grandma!!!

Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
 

Andi, no 27-29. They do not do this test.

Range on both 0-30:
We do 15-3 = 9 NORMAL, STAYED THE SAME FROM LAST WEEK.
125 = 9 NORMAL, DOWN ONE POINT FROM LAST WEEK.

Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
 

Karen

My fingers and toes are crossed for you right now! I'm really hoping it's just "intestinal flare"!

When I was on TCH, my markers shot up due to tumour flare. So this might really be a few nasty rebellious cells screaming its merry way out of your body!

Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
 

Hi Karen. I am hoping for good news. The markers can fluctuate at the beginning of a treatment so seeing that they are now stable is an encouraging indication. When are you going to have your first scan? Hugs. Michka

Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
 

The verdict is in: it's over.
Yesterday's scans reveal moderate progression in size, but nothing new. No progression in uptake. I love my doctor. As soon as she saw my numbers up, just by 3 points, she got me in for a PET/CT the next day at 2:00. She moves mountains for me.

Great. We have many options and this was waaaay too tough. Beyond what I could tolerate. We have options. We can look at tried and true chemos with Herceptin, or a few trials she has in mind that I may have to travel for. I've been told I have a low burden of disease.

I am truly exhausted. Researching, worrying, wondering, waiting, conferencing. Clarity is what I have now. What was needed to move forward. I will NOT be sorry to see this one go. It was like prepping for a colonoscopy every day for 30 days. Goodbye Temsirolimus and Neratinib. You will be good to someone else...
I would just like to add that this trial was very good to my friend, A., who was on it for some 1.5 years. PLEASE do not judge these drugs from my experience. If it is in your best interest to take them, DO!


Happy Easter.

Love
Karen

Re: It's Not Working! Three Weeks Of Nothing But Side Effects!
 

You describe the exhausting aspect well. Glad to see you are optomistic and putting this experience behind you
Keep the faith