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Off to Stanford 7/16 chemoemobilization

Nana b's picture
Nana b
Posts: 2938
Joined: May 2009

Well it's 3 am and I can't sleep. The Stanford board declined me, not a good candidate (Stage 4) but they did make me an appointment with one of their had doctors, who had a cancellation, that sit's on the board. Wish me luck. I drive to Stanford in the a.m., ah, in several hours. 

 

You out would think they would want to see Stage 4's, to see if anything can be done, instead of sweeping us under the carpet. 

 

betina61's picture
betina61
Posts: 642
Joined: Aug 2006

Hi nana b, its a long time for me that I don't come to this board, and the first message I see is your picture with your beatiful smile, I remember you very well, and be sure I will be praying that your visit at Stanford be a positive one for you.

Betina

 

Annabelle41415's picture
Annabelle41415
Posts: 4275
Joined: Feb 2009

I'm hoping that this doctor can give you some good advice and a plan in a direction that will help you.  Prayers that you come away from the appointment with renewed hope.  All the best and let us know how it goes.

Kim

Yolllmbs's picture
Yolllmbs
Posts: 175
Joined: May 2014

Happy you get to see one of their staff doctors. Hopefully they will yave a plan. Prayers. 

 

Trubrit's picture
Trubrit
Posts: 1489
Joined: Jan 2013

I am sorry that they have turned you down for a treatment plan, but hoping that maybe, this Dr. will reverse that and get you onto one. 

Safe travels. I hope you are driving with someone. It is not good to drive on such little sleep. 

Nana b's picture
Nana b
Posts: 2938
Joined: May 2009

Thank you all. My husband, Steve is driving me.  its terrible when you can't shut your brain off. You think you are going under and nada, then it's too late to take a sleeping pill.   I was working growing through ONC notes and doing a summary for Dr Kunz.   I want her to have the whole picture in front of her. 

 

Staying Strong! 

Betima,  great to see your face. Hope all is well

Lisa2012's picture
Lisa2012
Posts: 142
Joined: Feb 2014

Nana,

so interesting to me the  difference of opinion that exists.   I am a stage IV patient too, and the doctors here (in Chicago) have never used that as a reason for non-treatment.

i hope that your day is going well and that you are getting some answers

 

lisa

Nana b's picture
Nana b
Posts: 2938
Joined: May 2009

routime is that if you have active mets in more then one organ they won't do surgery. But if chemo knocks one out, you are good. However, if chemo stops working,we are on dep kimchi.  I heard kimchi is good for platelets  :) I have low platelets so haven't received chemo in a month. 

Lisa2012's picture
Lisa2012
Posts: 142
Joined: Feb 2014

Thanks, I hope your platelets respond well and then you can move forward in the future.

Nana b's picture
Nana b
Posts: 2938
Joined: May 2009

Doing radiation and cyber knife up here at Stanford in the next week or two. Getting the mets out and take a break from chemo.  Cyber knife for lungs will take 3 days so I will stay up here and one day to zap liver.   They will call and schedule as soon as she talks to radiologist.   Looking up. 

Cathleen Mary
Posts: 584
Joined: May 2011

What a difference 24 hours can make!   A plan with hope!  Blessings and good wishes as you move forward.  

Take a deep breath....

hugs,

CM

herdizziness's picture
herdizziness
Posts: 3402
Joined: Apr 2010

A woman with a plan!  Just WONDERFUL!!!!!!!

Winter Marie

Trubrit's picture
Trubrit
Posts: 1489
Joined: Jan 2013

This is good news. Scary maybe, but good. I think its great that they are getting right on it, no time to get too jittery. Thanks for keeping us updates so quickly. 

My prayers are with you. 

traci43's picture
traci43
Posts: 442
Joined: Jul 2007

You've got a game plan, thats great.  I really hope things work out for you and you can get off the chemo bandwagon.  Traci

kennyt's picture
kennyt
Posts: 110
Joined: Jun 2013

Who are you seeing at stanford? I had Daniel Chang thought he was a great guy.  I'm getting sbrt on two lung spots now, 1 down three to go.

 

Good luck

relaxoutdoors08
Posts: 521
Joined: May 2011

You were here on the board when I needed support. So happy to hear you have an aggressive plan. Prayers for good results and a Quality of Life.

Yolllmbs's picture
Yolllmbs
Posts: 175
Joined: May 2014

I know it's a tough road but it sounds like a great plan!  Hope your recovery is swift!

Kathleen808's picture
Kathleen808
Posts: 2308
Joined: Jan 2009

Sounds like a good plan Nana! Thinking of you.  <3

 

Aloha,

Kathleen

lilacbrroller's picture
lilacbrroller
Posts: 289
Joined: Jun 2012

Hope it all goes well. Good luck!

- Karin

janderson1964's picture
janderson1964
Posts: 1644
Joined: Oct 2011

Definately a good plan. I looked extensively into cyberknife and got opinions at 3 hospitals. I will most likely be doing cyberknife on the chestwall mets after i get through y90.

Nana b's picture
Nana b
Posts: 2938
Joined: May 2009

I'm seeing Dr Kunz. Very nice lady. In charge of many trials, which she putb my name down for. I loved Stanford and all their hidden gardens.  I sat out in one of the gardens with Winter.   Great meeting her.

 

The Stanford staff are all driven in customer service, very impressed. 

 

Thank you all so much, I am excited about this. 

kennyt's picture
kennyt
Posts: 110
Joined: Jun 2013

Daniel Chang was the radiologist I saw, I also had Pam kunz  for oncologist she so quite good.

impactzone's picture
impactzone
Posts: 435
Joined: Aug 2006

Nothing but good wishes from me. My onc there is Dr Fisher and he has been great but super busy. They all seem so swamped.

Chip

lp1964's picture
lp1964
Posts: 857
Joined: Jun 2013

...road infront of you, but it's gonna feel great when those spots are not in your body anymore.

I wish you the best of luck.

Laz

Nana b's picture
Nana b
Posts: 2938
Joined: May 2009

Got my appt, June 16. They go after Liver Mets. 

 

Thank you all.  

Trubrit's picture
Trubrit
Posts: 1489
Joined: Jan 2013

then it would be all over. 

I'll be thinking of you on July 16th.

Yolllmbs's picture
Yolllmbs
Posts: 175
Joined: May 2014

On my calendar and prayers list!  I'm sure with your spunk it will all be good!

herdizziness's picture
herdizziness
Posts: 3402
Joined: Apr 2010

That's not very far away at all, wonderful!!

Winter Marie

Nana b's picture
Nana b
Posts: 2938
Joined: May 2009

Getting ansy come on 16th.  Scans today. 

 

I've been busy moving and trying to get it all done as I heard that each procedure takes about 2 weeks to recoup. 

Yolllmbs's picture
Yolllmbs
Posts: 175
Joined: May 2014

I'm praying for  huge success and easier recovery!

Trubrit's picture
Trubrit
Posts: 1489
Joined: Jan 2013

Will be thinking praying and sending good vibes. 

Cyber hugs!

SUE/TRU

Annabelle41415's picture
Annabelle41415
Posts: 4275
Joined: Feb 2009

Prayers for a huge success on the 16th and I'm sure it can't come fast enough.  It's the anticipation for the date, but once it's over its all worth the wait.  Make sure you keep us up to date.  Wishing for the best.

Kim

Helen321's picture
Helen321
Posts: 783
Joined: May 2012

Hi Nana, I've been off the boards for a few weeks but I am so glad to come on and hear about your opportunity in Standford.  That's just great news.   I'll be saying a special prayer for you on the 16th.  Nervousness is the hardest part so just hang in there and before you know it, it'll be over and you'll be on the road to recovery and health. 

Cathleen Mary
Posts: 584
Joined: May 2011

Nana, I will be  thinking of you and praying for you tomorrow. May all go well!

CM

Nana b's picture
Nana b
Posts: 2938
Joined: May 2009

Thank you, since I'm not on chemo, my CEA is over a thousand and my liver lesion has doubled. My ONC does not want me to have the lung cyber knife and thinks I need to do chemo, that the procedure is too invasive. Dr Yen and Dr Kunz both think I need a chemo break and that even if another lesion comes up they can deal with it. This is all so confusing. I asked ONC could CEA be going up because my liver lesion is growing and he said possibly. He wants to start me on FLOFOX next week.

 

Again thank you, I have this on my mind all my waking hours.

Trubrit's picture
Trubrit
Posts: 1489
Joined: Jan 2013

I am so, so, so very sorry to hear this news.  How frustrating for you.  

I will pray more feverently on your behalf.

You are so sweet to post, during what must be a stressfull time. 

Bless you, dear lady. Bless you!

Yolllmbs's picture
Yolllmbs
Posts: 175
Joined: May 2014

and my thoughts are with you. It is so confusing to hear so many different opinions. It seems like there would be an easier way. I'm sorry they are not in agreement. My best wishes 

 

Yolanda

janderson1964's picture
janderson1964
Posts: 1644
Joined: Oct 2011

Have you talked to them about radioembolization. Very similar to chemoembolization except that they inject radioactive beads into the tumor. I just had it done.

Several months ago I seeked the opinion of 3 interventional radiologist at s major hospitals. One suggested chemoembolization the other two suggested radioembolization so the majority ruled in my case. It will still be a few months before we know how effective the treatment was.

Momof2plusteentwins's picture
Momof2plusteentwins
Posts: 455
Joined: May 2012

Sounds confusing, how frustrating!  What are you going to do?  I hope you can get a plan going and start some action to get rid of those mets.  Are you moving too?  Thinking of you on this day hoping you are getting something done.

Sandy

Nana b's picture
Nana b
Posts: 2938
Joined: May 2009

They are using the beads but they didn't call it that talking to Dr Kunz tomorrow. 

Going through groin. 

http://www.cancercenter.com/liver-cancer/chemoembolization/

 

http://www.medicalnewstoday.com/releases/135980.php

 

 

 

 

 

 

Nana b's picture
Nana b
Posts: 2938
Joined: May 2009

http://stanfordhospital.org/clinicsmedServices/medicalServices/interventionalRadiology/forms/1ChemoembolizationPrep.docx

janderson1964's picture
janderson1964
Posts: 1644
Joined: Oct 2011

I hope you get some sort of resolution tomorrow that you are comfortable with. You seem to be in such a similar situation as I am. Every treatment decision at this point is so critical yet the doctors cant agree because they are not sure. Its a crap shoot. I say that to my wife all of the time now. Every decision is like placing a bet in Vegas except we are gambling with our lives instead of money. To make matters worse i have never been a gambler. Ive been to Vegas a couple of times for business and hated it.

Sorry to get off subject. I will pray that you get a more clear picture tomorrow.

tanstaafl's picture
tanstaafl
Posts: 970
Joined: Oct 2010

Nana, have you thought about some flavor of ADAPT (like adding celecoxib to maintenance chemo) or at least getting evaluated for follow on?  

 

Nana b's picture
Nana b
Posts: 2938
Joined: May 2009

Getting discharged. Very mild pain.   may come back in 4 weeks to do again if still there.  They will need to see scans 

 

 

janderson1964's picture
janderson1964
Posts: 1644
Joined: Oct 2011

That is great. I am glad you were able to get the treatment done.

Yolllmbs's picture
Yolllmbs
Posts: 175
Joined: May 2014

I'm so glad it's just minor pain. Keeping you in my prayers. 

Helen321's picture
Helen321
Posts: 783
Joined: May 2012

Hi Nana, Glad the pain is mild.  I hope it's gone by today already.  Let's just pray that there is no need to come back in 4 weeks!   

Nana b's picture
Nana b
Posts: 2938
Joined: May 2009

 

 

I'm on pain pills, anti nausea pills and Decolax to prevent constipation.  I feel good. Will go back in 5 weeks to follow up and see if it worked or get another Procedure. 

 

Found  out that the cyber knife team wants my lesions in my lungs to grow a bit more before they do that procedure as right now they are stagnant. Good but, wanted them out. 

 

So no chemo, or they may get smaller  The chemo would also keep them from finding out if chemoemobilization is working on my liver. 

 

The two lesions on my lymph nodes are also not growing , but they are the hiway to my other organs.  I have to keep in mind that my chemo wasn't working either. 

 

Prayers for Winter who is in a lot of pain, and JBG who is near the end, and me who is preparing for procedures to come.  God bless us all.  

 

 

relaxoutdoors08
Posts: 521
Joined: May 2011

Nana 

so happy you were able to have treatments. Prayers for our CC friends who need our prayers.

NB

Annabelle41415's picture
Annabelle41415
Posts: 4275
Joined: Feb 2009

My thoughts and prayers are with you.  Wishing you could get those out as well so you could be done with it but just know you are being thought of and prayed for. JBG is always in my thoughts and prayers as well as all of us.  I'm so sorry she is where she is at though.  My heart breaks for all who is going through this fight.

Kim

janderson1964's picture
janderson1964
Posts: 1644
Joined: Oct 2011

I am in the same boat as you are when it comes to cyberknife. A few months ago i got opinions from 4 different radiologist abou my chestwall lesions. They all said they were too small at that point. My last scan showed 3 were gone one stable and one shrunk. So like you i have to live with them for now but at least they are not growing or spreading at this time. The main focus again like you is my liver.

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