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