Very nervous

CoolBreeze · 10-25-2011, 01:48 PM

I've been off chemo/herceptin for six weeks - it'll be 2 months before I start up again.

My last chemo was the 22nd, and I had my liver resection on October 3rd. I know I needed healing time but I am very ready to start up again. They got all the cancer in my liver but we all know there could be a cell there lurking and waiting.

I'm more nervous know that I've ever been about this. I wanted a quicker appointment but my onc wants me to see the surgeon first and he's so busy I couldn't get an appointment until November 2nd. I see the onc on November 9th and I doubt I'll start chemo right that day.

My cancer grows fast. In five months, it went from zero to 5 cms in the liver. I know I'm supposed to be cured and no more cancer - but I'm finding it very hard to think that way and I'm nervous.

Who knew somebody couldn't wait to get back on chemo/herceptin????

Andrea Barnett Budin · 10-25-2011, 02:18 PM

I RECALL MY ONC ASSURING ME THAT THE SHELF LIFE FOR HERCEPTIN IS VERY LONG -- UP TO 6 MNTHS. (So when I quit H after 10 yrs, nervously of course, I figured I could get through a half yr at the very least.) One step at a time.

Next wk you'll see your surgeon, and be cleared no doubt for chemo. The 9th is fast approaching. Before you know it -- Thanksgiving will be here.

I know -- it's so very hard not to worry, but it messes up your T cells and immune system and plays games w/your ability to enjoy your mini vaca.

I keep talking to my body -- HEAL! HEALTHY AND WELL! NO MORE CANCER! The body listens to everything you think, say or whisper. It has no sense of humor, I've learned. Make your commands clear. Intention and Expectation are key to achieving your goals.

I know some think this is magical thinking but psycho neuro immunology is serious business...

Sending loving, healing, peaceful energy, CB...

Andi

CoolBreeze · 10-25-2011, 03:32 PM

Unfortunately, my cancer recurred only a few months after my last herceptin and had grown large, so that 6 months assurance doesn't apply to me.

It's funny - I've never been nervous. Not when first diagnosed and not when told I was Stage Iv. It's now, when I have a chance for actual cure, that I am nervous. I guess it make sense if you think about it - I don't want to mess the cure up.

I'm trying to think very positively as I have always done, and I try to use language that says I'm healed. Truth is, I want that drip as assurance and 2 months is a long time considering what I know about how fast my cancer grows. That means too, I must not have much faith in the cure the doctors just tried to give me, which means my attempts at considering myself a normal person who can have a long life is not internalized.

I even thought about getting a tat to make myself remember every day that I'm healed. But, to be truthful, I don't really like tattoos.

I thought about getting this bracelet: http://www.zales.com/product/index.j...uctId=11166494 with the words "Cure" "Heal" "Prevail" as a reminder.

It's funny, it was very easy for me to slide into Stage IV mode much harder to get out of it. Especially because I know the chances aren't great I'll be cured - but some women are? Why not me?

Lori R · 10-25-2011, 05:46 PM

Dear Cool Breeze,
I encourage you to be a pain in the butt and push for what your heart is telling you. Call the Surgeon's office and get on a cancelation list. Explain to them that his inability to see you is slowing down further treatment. You know your body and it sounds like you are doing very well.

Next, call your onc and get an appointment for the day following the appt with the surgeon.

It is OK to fight and be demanding for what you know is best for you.

The ONLY time I haven't pushed the envelope was after my surgery. I really wish I had. So don't have regrets on this.

Sending support and a little encouragement....Lori

Lori

DeenaH · 10-25-2011, 08:53 PM

Why can't they give you herceptin now? I kept on with my herceptin and tykerb all through recovery from my lung resection surgery. And I was cleared for adding navelbine less than 2 weeks after surgery. I even took the tykerb while I was still in the hospital. I would be a squeaky wheel and call your surgeon's office everyday asking about cancellations. Good luck!

BonnieR · 10-25-2011, 10:17 PM

You asked "why not me?". Indeed. Why not you. It is so easy to get into one mind set. But I have been told we can only think one thought at a time. So make it a healing one. Buy the bracelet! And keep the faith.

CoolBreeze · 10-26-2011, 01:09 AM

The reason they want me to wait is to be sure my liver can process herception/chemo. As you know, it's your liver that does all the cleaning and processing of everything that goes into your body, and half of mine is gone. They need to be sure it can handle the toxic chemo drugs before they give them to me.

My surgeon wanted to see me three weeks post-hospitalization, and I'm right on track, it's almost exact. And, my onc wants me to see the surgeon first as he's the one who will know about the liver. I see the onc 6 days later so there is no real delay.

Unfortunately, this is the time constraints necessary, and they medically can't be rushed. But they still make me very nervous. I want my chemo!!!

By the way, the one thing you never have to worry about me is passivity, lol.

I am still thinking about that bracelet. A constant reminder of my healthy state would be great. If anybody has other ideas, I'm all ears.

Pam P · 10-26-2011, 04:44 AM

Cool Breeze - Get the bracelet, it will give you joy and remind you of good health. I was going to go to a Scandinavian store and get a special pair of earrings for my 60th b-day. Before I could get there I broke my leg. The mission is postponed, not canceled.

I understand the reasons you gave for letting your liver heal and not introducing chemo yet. I also GET the anxiety of not having the chemo. Prayers that you remain safe and healthy during this period and get back on tx soon.

Becky · 10-26-2011, 04:50 AM

Dear Cool

Herceptin is not chemo. Can you get a weekly dose to start - it is the chemo they are worried about (or at least it should be and rightly so - the chemo is hard and the liver is the master detox organ). But seriously, get your onc and the liver surgeon to talk. You might be able to do weekly Herceptin alone. Then, when time's up on the wait, add in the chemo on that magic day and get chemo and Herceptin. Its just a thought and I think this might be allowed. However, you are going to have to push for it. Look on the Herceptin site for ammo (I really never looked if there could be liver issues with just Herceptin - I would think not).

Andrea Barnett Budin · 10-26-2011, 07:14 AM

Yes Cool. I didn't know all you posted after the first post. Got with your gut, your Inner Voice. Of course you're anxious, but be calm and assertive and follow the advice above.

I also remember my onc telling me -- NO MATTER -- WHAT YOU ALWAYS GET HERCEPTIN. In '98 it was given weekly. It was years later that I was able to switch to the triple dose every 3 wks.

Explain to the person who answers the phone, in a calm but urgent manner, the way you would speak to a friend. It generally gets me what I want.

Prior to my orig dx I was pushing for a mammo. Nothing for 2 wks. I called back, explained firmly, and was told -- You're not going to believe this, I JUST had a cancellation! Go for it, Cool...

michka · 10-26-2011, 07:58 AM

Hi CB. I understand how you feel but your liver needs to heal a little.
I was on Herceptin+Tykerb before the operation and my liver parameters were normal.
I always stayed on Herceptin. I stopped Tykerb 10 days before (which I believe was too short). I started Navelbine, and restarted Tykerb about 1 month after the operation. It was really tough for my digestion and for my liver. It took months for my liver parameters to come back to normal and I didn't feel well at all. I believe chemo hit hard on the liver. I stopped Navelbine end of September and only my last blood tests last week showed normal parameters.
But I am not an onc. If you feel good and your blood work is good, then you should really discuss chemo with your onc. You will feel better. But don't worry too much. Even if you only see your onc on the 9th you will still be on track.
Hugs. Michka

LoisLane · 10-26-2011, 08:08 AM

Hi coolbreeze. I hear your anxiety and I am sure it is so difficult to wait. You are so brave and have have been strong and determined through this last surgery. If the doctor feels your liver needs to be strong enough to process the chemo and herceptin I think that is as you have said a reality here. As the ladies said here follow your heart and instincts. Perhaps try a meditation tape and breathing to get you through this. You were speaking of tatoos. I had bilateral breast cancer with double mastectomy and no reconstruction. I have decided to get a very delicate small cherry blossom tatoo across the top of chest on the right side. I didn't know until I was looking for a picture that cherry blossoms
mean "rebirth" so I feel that we will all keep being reborn, going through the struggles
and keep going. Ann I wish you strength, determination and calmness you will get through this stuff be the optimistic person you are!

DeenaH · 10-26-2011, 09:17 AM

Gotcha. That makes total sense. Hang in there!

And i agree. Get the bracelet!

CoolBreeze · 10-26-2011, 11:33 AM

Thanks ladies. Trust me, if I thought it would help I'd be on the phone right now insisting on herceptin immediately. But, I know he's not going to order it until the surgeon signs off that my liver has healed enough. Herceptin may not be hard on a normal liver but on a half liver - that's a different story.

It's just hard to sit and wait. I know the second I get my first infusion I'll feel better.

I bet I'm one of the few women itching to get chemo!

KDR · 10-26-2011, 01:37 PM

CoolBreeze,
Here's to wishing that your liver regenerates quickly--and that your road gets a little easier from here.
Karen

chrisy · 10-26-2011, 03:32 PM

Stay on the "why NOT me" thought. Funny, I just sent a memo to my department managers telling them they had to have their 2012 Goals submitted by November 9 - and everyone is freaking out that it is so little time! Different world...

But, I think if you have the appt with the surgeon set on Nov 2, push to see your oncologist earlier than the 9th. You could also, assuming that you get the all-clear for chemo, have them schedule it now - it can always be canceled if necessary. I don't see any reason why you would need to wait for the appt with the onc, then at that point be "oh, now lets think about scheduling the chemo".

Keep in mind tho, you are right now NED! And you do need your liver to be as healthy as possible to process the chemo safely. As Becky said, everyone is rightly concerned that you be READY.

Think....cured!

CoolBreeze · 10-26-2011, 04:20 PM

Hi Ladies,

I was hoping somebody understood, but I see I'm in an unusual place.

I am about the most assertive person you'd ever want to meet, and would have no hang-ups insisting on an appointment if that is what needed to be done. In fact, I have my onc's personal cell number and am not afraid to use it.

This is the way it has to be. The surgeon has to sign off before I get chemo or zometa or hercepton for my health. Having your liver removed means you react differently to drugs. Whatever another person's onc said to them-unless you had a liver resection and ablation-it doesn't apply.

My onc has practices out of town so I can only see him Wednesday, and I have the first Wednesday appt after I see the surgeon. I usually see him in the afternoon but I have a morning appt so there will be time to get my meds if allowed.

I wasn't asking for advice on how to handle the situation, just looking for a little sympathy and understanding.

But, I guess maybe if you haven't had this surgery, it's hard to understand.

In any event, I did buy that bracelet as a reminder to think cure.

StephN · 10-26-2011, 04:35 PM

Dear Cool Lady -

I have been in the liver mets crowd myself, but due to so much spread was not a candidate for any kind of resection. Someone above mentioned "your liver regerates" - and I am wondering if you have had so much REMOVED there is a possibility that some will actually grow back. Have your docs mentioned any such thing?

I started a stiff round of multiple chemos plus Herceptin with only about 40% of my liver healthy, but it was scattered. The chemo had something IN my liver to go to work on, so I guess that is not the same as not having anything there at all.

Thanks for the explanation of everyone's schedules. Those are always a hurdle when you are seeking the best possible advice.

Wear the bracelet to your heart's content and burn those words into your brain. Make them overpower the doubt and unease you are feeling. The time will pass quickly if you let it.

CoolBreeze · 10-27-2011, 12:02 PM

Yes, your liver regenerates. The theory behind how tired I am is because I'm growing a new liver! No idea if that's true or not.

I guess it doesn't take long to grow either - between two weeks to two months. Isn't that amazing?

Ellie F · 10-27-2011, 12:22 PM

Hi
A good friend of mine had a large part of her liver removed for mets from colon cancer also going for the cure! She had 'mop up' chemo three months after surgery by which time her liver had completely regenerated.Her surgeon insisted she follow a really strict diet post surgery which she did to the letter. Five years later she is still NED.
Ellie