Kadcydla versus neurosurgery and paralysis
 

Does Kaycylda cross the blood brain barrier?
I am really in between a rock and a fast moving glacier. Neurosurgeon wants to do a laminectomy style removal of the t-8-9 lesion he says it shifts enough to right, gave oncologist info on IT Topotecan, has not found anyone using for "breast cancer mets" So the insurance will pay for it. He suggegeted KAdcyla, what I have found is that it sometimes they used in place of Tykerb and xeloda in a couple of trials. I am still on Tykerb but not xeloda anymore.

I have not a lot of time with the nerve symptoms, getting worse. Nor to reinvent the wheel .

Thanks Darita Pfeister

Re: Kadcydla versus neurosurgery and paralysis
 

Darita,

I don't have any treatment words of wisdom, but wanted you to know I'm in your corner and holding you in my thoughts and prayers.

Blessings,

Re: Kadcydla versus neurosurgery and paralysis
 

Topotecan used with the Herceptin IT did not work for my daughter. The area became larger and the spinal fluid cells showed contamination.
They started Depocyt - a really fierce chemo that was given every three weeks IT and the other weeks in between she received the 80 mg Herceptin IT. Her neuro affects became worse for a while and she had to have dexamethasone but it took down the growth.
They have stopped the Depocyt now and she is just on the Herceptin IT for the leptomeningeal problem.

Of course she had to do the Abraxine for the lymph nodes that Kadcyla and other prior targeted drugs were not working to take down.
I don't know it the Depocyt would do the job for you or that your insurance would approve. It is a fierce drug and made her pretty sick for a while, but worked to take the tumor down and the Emend stopped the nausea and vomiting.

Re: Kadcydla versus neurosurgery and paralysis
 

Thanks for your replies peace and Healing for 2014

Darita

Re: Kadcydla versus neurosurgery and paralysis
 

Dear Darita -
I hope the suggestion above might help you if your doctors will give it a try.

My best thoughts for a successful treatment - whatever you decide.

Re: Kadcydla versus neurosurgery and paralysis
 

I too have no advice, as I am not aware of the treatment. Keep us posted!!

Re: Kadcydla versus neurosurgery and paralysis
 

To answer the original question about what crosses the blood /brain barrier......

I know of only three that do. Xeloda, Tykerb and Emend.
I do not think any of the targeted drugs like Herceptin, perjeta, kadcyla or chemotherapy drugs cross the blood /brain barrier.

The ones that can be given per ommaya or directly into the spinal cord per puncture have the best chance of working.

I sure hope you find something that works for you.

Ev

Re: Kadcydla versus neurosurgery and paralysis
 

Rolepaul
Senior Member

Join Date: Jan 2012
Location: Boulder Colorado as of January 2013
Posts: 267
Re: brain mets
Brain mets stink. They are so scary and if you read literature and talk to doctors you get depressed. Here is a story I hope will inspire you.
Nina had a large brain met diagnosed on 11/2/2009. We did surgical excision, Cyberkife, and Tykerb/Xeloda. A couple of whack a mole radiations in the spring of 2009 and November 2010. Things looked stable, but in October 2011 started to have some hip/leg/back pain. Found three lesions on the brain surface and 20-30 satellite lesions in the spinal nerves. Went to the war room and came out with Intrathecal Herceptin and Topotecan. Got to the correct dosing and 90 days later saw no atypical cells, clean MRI scans, and other indications of disease no longer showing its head. Flare up at two points on labor day, but these are resolved. All I can tell you is to start at 40 mg of Herceptin via either an Ommaya reservoir or Spinal tap, with steroids for 3-4 weeks. Then go up to 1.5 mg/kg of Intrathecal Herceptin. In those cases where this has been done, the results are stunningly good. Have your doctor contact Dr. Loghin at MD Anderson Brain and Spine as she has four patients currently in treatment.

I am not here to save the world, but I am here to do good. I want to pay it forward for a wife that is alive 13 months after she was given a 90 day life span. We are living within 2.5 miles of her mother and I am enjoying new work. It is important to me to have others treated that have similar critical diagnosis. IF I can help you, that is just another smile for me for the day.

Re: Kadcydla versus neurosurgery and paralysis
 

Re: Kadcydla versus neurosurgery and paralysis
 

Re: Kadcydla versus neurosurgery and paralysis
 

No advice sadly but wanted to send good wishes to you Darita. xx

Re: Kadcydla versus neurosurgery and paralysis
 

I have not heard that t dm-1 9 kadcyla) crosses bbb. I guess that includes spinal fluid , but could attack bone mets anywhere. perhaps that's why your doc wants to try it. any metastatic her2 pt. who hasn't tried tdm-1 should definitely give it a try. my wife is 3 yrs on it, ned over 2. i hear adding perjeta increases its effectiveness.
tykerb crosses bbb, and some say avastin does. IT Herceptin is another brain tx at some research hospitals like md Anderson. lani and rolepaul know a lot.

Re: Kadcydla versus neurosurgery and paralysis
 

yes, Avastin does cross the blood/brain barrier - I forgot that one. Susan was on Avastin for a while but had side effects and it did not work for her. Everyone is different and reacts differently and individually to the treatments.
Ev

Re: Kadcydla versus neurosurgery and paralysis
 

Happened to see this one today on Cancer Connect about how to handle kadcyla side effects:

"Hi all,

I just wanted to share this with any of you on Kadcyla or Herceptin. I used to get Zofran while on the former and used to get blurry vision, dizziness, bitter taste, lack of appetite, constipation, dark urine, palpitations, etc. It got so bad that my oncologist ordered a brain CT which thank G-d came out clean.

I thought it might be the Zofran after researching its side effects online. Although my doctor thought Zofran was more or less without side effects, it's been a few days now since my last treatment and I have practically no side effects. It's a life-changer for me! And I never got the nausea Zofran was supposed to prevent!

So if you're on Kadcyla and have side-effects, try to eliminate any pre-meds and see if it helps. I want to thank you all who gave me advice when I asked if I could discontinue Zofran. Just in case, my doctor gave me Zofran pills that I bought before my treatment to take at home if I got nauseous, but I never needed it.

By the way, I used to get Benadryl while on Herceptin which made me drowsy. Herceptin alone was so much better!

So basically the message is, when we get side effects, it might not be the treatment but the pre-meds, and it's a good idea to see if we really need them. Even doctors don't know as much as we do because we are the ones who actually take them...

All the best to you all! Thanks for your advice & I hope this message will be helpful to many as well. :-)"

Re: Kadcydla versus neurosurgery and paralysis
 

Avastin worked for me, so far. I defo crosses the BBB. I was only on it for my necrosis though.

Re: Kadcydla versus neurosurgery and paralysis
 

thanks everyone. In the hurry and wait department, hopefully will hear something this week. Going prayerfully for IT topetecan, was a Dr was at MD Anderson, now in Texas at Texas Oncology around Austin. Dr Morris that actually was a researcher in a clinical trial in adults, including Breast cancer. Old drug, currently and most frequently used in children, via IT and Omaya.
So seeking CT of chest abdomen and pelvis, bone scan ASAP this week to make sure everything else is clear. (my insurance does not pay for PET/ct restaging) Breast cancer anymore. Just want to make sure everything else is clear before refusing Tdm-1.

I am still getting 100mg IT herceptin weekly and Tykerb 750mg daily. took xeloda 6 months in 3/13 and failed from the extreme neuropathy and dehydration from the diarrhea. told onc and neurosurgeon, will go back on Xeloda if needed with outpatient IV hydration and electrolyte replacement.
With increasing since Friday neuro symptoms, praying for a negative CT scan and a quick insurance approval.

By the way Texas Oncology group is a very large practice and are starting the IT Herceptin trials as well.

Peace and prayers
Darita

Re: Kadcydla versus neurosurgery and paralysis
 

Temodor also passes the blood brain barrier like Xeloda. It has been used in BC mets to the brain but is commonly used for true Brain cancer. I believe, that like Xeloda, it is also a pill.

Hard place Rock and A moving glacier!!!
 

so Oncologist called last night, to discuss options. Prayerfully will get Ct of chest /abd/ pelvis and bone scan done the next couple of days.

He is wanting to try Abraxane, I suggested going back on the Xeloda with IV support, and lower dose. Oncolologist has already stuck his neck out for me to do the IT Herceptin. I talked to the main Nurse for the practice today and forwarded all the Info they I have sent re the Topotecan IT treatment, But there again it is off label and I don't think I have months to sit on this one.

Talked to Neurosurgeon again today, he could get this done within the next couple of weeks. Worse case paralysis waist down, best case weakness, and lots of rehab.

My major concern is if I start chemo, surgeon already worrying about counts, steroids I am still on etc. So If I do Chemo and it does not stop the Thoracic spine lesion at T8 then all I have just wasted time? Abraxane and Xeloda causes severe neuropathy, which I already have in both feet.

Do surgery after postop would continue getting my IT and IV herceptin, and Taking Tykerb, 750 a day.

Peace Hope and Prayers
Thanks for all the input

Re: Kadcydla versus neurosurgery and paralysis
 

Darita, Your oncologist has your records and tests showing the size of the lesion, but have you considered asking for an opinion from another oncologist? MD Anderson is where we persuaded an oncologist to try the topotecan. He did so after consulting with Monica. It did not do the job for Susan however as the lesion grew with the Herceptin/ topotecan combination.
He had to go with the depocyt for a while. The depocyt cannot be mixed with the Herceptin so the Depocyt was given separately every three weeks.
Time is so important here, Darita.
I am concerned that more is not being done more quickly.
I am concerned and am hoping they come up with a winning solution soon.
Hope and best wishes to you,

Ev.

Re: Kadcydla versus neurosurgery and paralysis
 

I don't know if Kadcyla crosses the blood-brain barrier, but at ESMO Conference, later this month the following abstract will be discussed.

"Abstract
Aim


Local treatment options such as radiotherapy or neurosurgery are the mainstay of brain metastases (BM) management. Whole brain radiotherapy (WBRT), however, is associated with severe late-toxicity. The LANDSCAPE trial established lapatinib plus capecitabine (LapCap) as primary systemic treatment in oligosymptomatic patients (pts) with multiple Her2-positive BM. Limited evidence exists regarding the activity of antibodies in BM. T-DM1 is an antibody-drug conjugate covalently linking trastuzumab (T) to an anti-microtubule agent (emtansine) with higher activity and lower toxicity as compared to LapCap. Therefore, we evaluated the activity of T-DM1 in newly diagnosed BM or BM progressing after local initial treatment.

Methods


Nine pts (median age 55 years) with Her2-positive BM treated at two Austrian centres were included. All pts had received prior treatment with T, five pts (55.6%) had already received lapatinib, and two pts (22.2%) pertuzumab as well. In two asymptomatic pts, T-DM1 was administered as primary therapy, while seven pts had documented CNS progression upon prior local treatment. T-DM1 was administered every three weeks at a dose of 3.6 mg/kg.

Results


Median follow-up was 6 months and median brain metastases-free survival 11 months. Seven pts (two with primary treatment and five receiving T-DM1 upon CNS progression) are currently assessable for CNS response. 3/7 pts (42.9%) had a partial remission, one patient progressing upon prior local therapy had stable disease lasting for fifteen cycles, and one patient had stable disease for 5 month. Two pts with prior WBRT had CNS progression after three treatment cycles.

Conclusions


This prospective case series again indicates relevant clinical activity of systemic treatment in Her2-positive BM. LapCap remains the standard of care but results of this analysis warrants further investigation of T-DM1 in BM in the context of prospective clinical studies.

Disclosure


R. Bartsch: has received lecture honoraria, research grants and travel support from Roche Austria. R. Bartsch has received lecture honoraria from GSK Austria; M. Preusser: has received lecture honoraria and research support from Roche Austria.All other authors have declared no conflicts of interest."