Angry at my ONC. New ONC - starting Folori & Avastin

(((Vicki)))
Vicki

I'm sorry about hearing all of this. I've had a couple of mistakes along the way as well. My onc told me once that he had made a couple of mistakes along the way with me...and at the end, he said he didn't know what to do with me anymore.

While, you have to deal with the initial shock of all of this, I think you will find quickly that we will have to redirect our anger and our energies towards the problem and not what has transpired.

As painful as that is, the past is now the past. Mistakes were made and now we have to figure out a way to overcome this latest challenge. It hurt me then and I know you're hurt now.

Won't go away overnight, but try not to dwell on it more than a day or two - and then turn it around and engage back in the fight itself. Even though a mistake was made, we can't change it, anymore than I could when it was my time.

In looking for the silver lining here, I would say that you're Awareness has increased as a result of this. Meaning, you will be more likely to pull the trigger going forward, when something doesn't sound right to you.

You will have learned to question when something does not sound right. You will give into your inner self better when you hear it whispering in your ear.

The new plan itself sounds viable - that combo should shrink the tumors and you will more than likely have a good response to that treatment. Like all treatments, this one has it's own things to deal with and I found it personally tough - but effective.

I was going 3 months at a time - and just recently my onc moved me out to six-months. It is hard for all of us living in those time frames. Just no easy way to say it. Having made it out as far as I have, my whole time has been broken up into those chunks of time.

But, for now, just looking up the road 3 months is something that is attainable and not too overwhelming - I mean it will be here before you know it. So, what I'm trying to say is that three months is like these building blocks that help get us to the next time frame. Sort of like baby steps to keep us moving forward.

I'm disappointed about all of this, and understandable you are too.

But, don't worry about the past now, it's gone....focus on the here and now and what we're gonna do now to get the upper hand back. The road will be a little bit longer - mine was too.

We're not going anywhere - and neither are you:)

I wish I could say something magical...but cancer is hard work.

I can't leave without telling you a quick story...

I had bad care from a general doctor that led to me having cancer...misdiagnosed for 3 years...at that time in my life, I was furious...and for good reason. Everbody said sue him...but 10-lawyers later and I was termed "not economically viable."

So, I shut the door on that chapter and moved on to fighting cancer. I could not spend my time worrying about the past - especially since I could not change what happened.

He blew it - and now I had to live with it - for the rest of what my life would be.

I was mad and angry, but could not really change it, so I've spent the last 8-years just fighting the cancer...I found I couldn't serve two masters.

Chin up, Vicki....you took one there, but get back up here in a day or so, and let's move this train forward again. I'm glad you sought the other opinion as it helps to solidify all of this in your mind and will allow you to move past it and focus on where the fight is now.

Here with you:)

-Craig

janie1 said:

I now realize, too, it is
I now realize, too, it is best to go to a crc specialist. Just too much in treating all different cancers.
I do get a little perturbed when docs say the buzz phrase.....treat it like a chronic condition like diabetes. IMO, it aint nothing comparable
to diabetes. And new things coming out every day.....great, what are they......we're waiting
The waiting game is the hardest, but doc is right there about giving it time.
I know i need to get in a better frame of mind - that' s what my focus will be while waiting.
Hope you will do the same Vicki. I wish i were near the beach.....that is relaxing, and motivating at the same time
I know you are p*issed off at the first onc, but try not to do the would of, could of....it doesnt help, but you already know that.
A big hug.
J

I wonder if a lot of this is
I wonder if a lot of this is because of our age....maybe doc's just do not see a lot of this in people our age...and so we're treated as though we have a more common ailment...I know I went to doc. complaining of tummy issues, he checked me over said I was a completely healthy young woman and sent away with antacids he pulled out of a cupboard, and a script for antibiotics cause I may have picked up a stomach bug. Two days later I was in hospital with two large blood clots one in each lung and a tumor the size of a fist blocking my colon. Didn't see that one coming!!! Vicki, I'll be soon joining you on Folfiri, onc. wants me back on it as it worked so well for me last time. Beat it down and I got a 10 month break from chemo. ....I wish though instead of a complete break that I had gone on the Xeloda I'm on now (temporarily). Perhaps (who knows) it would have been enough to keep this progression at bay!!! I managed Folfiri for 10 months, worst trouble was the diarrhea...once I figured out what I needed to take, it was quite manageable. Had nausea the first infusion but didn't after that. They give you pre meds, take them they help a lot. Another thing that helped much was getting Atropine just prior to getting the infusion.

Good idea - the psych & nutritionist
One study on lung cancer patients indicated that when they got supportive care for symptoms and mental attitude (palliative) from the beginning they faired a lot better than patients who had identical cancer treatment but no (or minimal) supportive care...



Palliative care

Sooooo frustrating!!
But I like your onc. I have a feeling that you will respond well. Get those tumors down to a couple and then zap the nasties out! (Or even cut them out if possible)

I found my lung tumors take longer but they do respond to the same chemo.

Hang in there

world views
The real technical issue here is why oncs did not consider easy answers in the world literature like cimetidine, COX2 inhibitors like Celebrex or natural ones, and PSK that radically improve the odds for stage III. Of course he'll say they are not FDA approved or ASCO supported. Answers that may reduce recurrence risk for stage III by more than half of those that will recur.

Also mainstream RD nutritionists are often quite different than either more current science literature based or naturopathic approaches. I won't even fool with RDs now unless they are able to demonstrate breadth or currency, been there - ugly and catastrophic ignorance and politics on therapeutic nutrition.

PatchAdams said:

Great plan, Vicki
My onc gave me a .25 dose of Xanax to use if I feel anxiety coming on and can't calm down. He said I can take 3 a day. I've found, if I stopped the anxiety before it gets bad, one pill will do the trick for 24/ 48 hours or even more. It's stopping it before it starts that helps me.

Also, I had a recent met 3 years post my Stage IIIB dx. I couldn't get past the sadness. Finally thought, Stats say I have greater than a 72% chance of being alive in 5 years and a 50% chance of being cured. Five years is about 80,000 HOURS. I've already wasted 3 1/2 months worrying and 'sad'. That's enough! Right now, for THIS hour, I'm going to enjoy my coffee, try to share 'cheer' with you and then find something fun to do today, even if it's planning some homemade Christmas presents or sitting on the deck with my dog. I'll not give this day away to sadness because those lost hours cannot be regained...... PLUS, if I am 'cured' at 5 years and have spent the previous 5 years sulking ....... I will have wasted 5 years of my life for nothing!

Here's a HUGE hug for you, Vicki!

Patch

Good advice
for those of us with reoccurrence.

Vickilg said:

Like Button
I wish there was like button on here as there is on Facebook. Thank you everyone for answering back. I appreciate all of the responses more than you know. Thank you for the great advice and support.

Big hug to everyone!

Vicki

Thanks for informing us
of the dangers in letting the doctors "play God" - they are not infallible; yes, it is called "practicing medicine" so the doctors should reamin open to questions, suggestions from the patients.

I too fired my first ONC - I should have had chemo after my 2nd surgery; now, with 3rd occurence, I am at a cancer center with specialists in each type of cancer (like our boards) ;-)

I will have 6 weeks of Xeloda (two different scripts?) and 6 weeks of radiation simultaneously. Then surgery to remove rest of rectum and possibly anus, then 6 months of chemo afterwards. That is prolly the regimen you should have had after 2nd recurrence - but, every case is different. I am Stage III, and when I asked how long would I have after surgery, the doctor said no one has a crystal ball... he told me to remain positive and alert to any changes in my body.

Craig - I had thoughts about suing my first ONC AND my primary - I feel they had let me slip through the cracks. But the comments I have gotten from friends and family at this remark have left me thinking, "the past is the past - move forward" - and after hearing your story, I will just leave it alone.

Vicki - Try to let go of the anger, and look at it as a learning curve. Anger/hatred is poison in our bodies - we have enough poison to fight right now. Stay positive!

Hugs
Marilyn

danker said:

Oncologist
Sounds like you now have the onc who will do the best for you. Lots of hugs and good luck.

Misdiagnosed and we must move forward...
The anger and my own frustration of thinking my internist and oncologist were communicating at stage I in 08 leaves me with the same feelings.
It has been hard emotionally healing from my surgeries and trying to develop the 'new normal' and comments from non - cancer friends make. A few have dropped to the wayside or suggested a bucket list or to buy new clothes bcuz I am skinny from chemo. Family members in my case aren't as supportive as I read others have. Maybe its cliches. I don't know. Guess I am bitter at times.

You are not alone and we have all dealt w/ups and downs to keep us strong and continue w/questions and to keep fighting.

Thank you all for letting me vent.

There are so many kind people on these board and I appreciate the info that is sincere and shared to ease the fear.

I hope I can help someone on their journey w/this disease. I feel fortunate to have a cancer Center to go to, although I don't always come out of my support group feeling elated.