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

Vickilg

Good morning... there are many topics in this post so I will try to be short.

Went for second opinion for my Stage IV with 20+ small lung mets in both lungs. Had 55% of liver removed June 4th for one spot plus one cancer lymph. CEA went from 1.8 which is high for me to 5.9 in one month.

Second ONC opinion confirmed what I suspected all along with the first chemo I ever had. I never felt it was strong enough. Back in 2009 when diagnosed Stage 3, I had rectal tumor and 3-4 cancer lymph nodes. After radiation and after surgery, he put me on Xeloda only for 3 months. Cancer free - told cured. I was for about 10 months. I never, ever felt the chemo was strong enough. It was just too easy. Sure enough the Second opinion ONC confirmed that since lymph nodes were involved it should have been Xeloda with something else but not just Xeloda. I am furious because I kept asking the doctors at the time if this was enough and they all assured me yes. When it came back the 2nd time, I questioned again the first chemo they did and they all said it was correct. Well it wasn't and now I am very angry because maybe I would not have been in this situation. This is the same ONC that told me a month ago that I have 2 years to live.

Changing to the new doctor. Not even going to call the old one. New doctor seemed very smart and at this place the ONC focus on specfic cancers because he said there is just so much new information that you really need to be specialized. There is a new one coming out and I am sorry I didn't get the name but I will.

At any rate, he didn't sugar coat it. I am going on Folori and Avastin for 3 months. Do a Petscan and see how the spots react. If they are shrinking we keep going, if they are worse, he will switch things. He made no promises saying, I could do this and they are all gone and I go into remission, I could do this and they get worse, I could do this but will still need pallitive chemo but where I can take breaks. As far as radiation, too many right now and if it gets to a few we can discuss cyberknife. He said he will never use the word cured. He said he won't discuss timeframes because honestly no one knows and everyone is different and there are new things come out everyday. He told me to focus on 3 months at a time and try to not look further than that in regards to the cancer but to remember there colorectal cancer is being treated long term like diabetes these days.

This facility also has phsychologist and nutritionist on staff to help one battling cancer. I am going to check out both becase the 2 year comment has left me with high anxiety. I don't like to medicate but I feel that I really, really need something right now especially finding out that I received the wrong chemo 3 years ago.

Maxiecat

(((Hugs))) it sounds like
(((Hugs))) it sounds like you are finally on the ight path with an onc that you trust and more importanly a treatment plan that you feel comfortable with. Take advantage of the counseling support that they offer... we all need an avenue to vent and get things out. Hopefully this new plan will give you a new lease on life...knowing that someone is finally listening to your concerns. Afterall it is your body and your life...keep fighting!

Alex

Sundanceh

(((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

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

smokeyjoe

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.

dmj101

it is called a Medical Practice
It is not an exact science unfortunately.. what works in one may not work in someone else... so I don't know what to say..
I am angry too.. my situation is similar.. I am too now on Folfiri and Vectibix..
but I know we cannot dwell in the anger as it is too damaging to us..
My wish for you is peace..
We need to move on to the healing path... friend..
don't let this eat at you.. move on to positive thoughts..

peterz54

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

dorookie

YOU GO!

I moved fm AZ to TX and of course hadto find a new ONC, i did and on about the second visit i asked him if he believed if i made it to the 5 yr mark if i would be considered cured. He looked at me and bluntly stated "you are stage four there is no cure". I fired him, never went back found a new ONC and on the first visit i asked her the same question and her answer was, "i believe you are already cured, being i was over three years without a reoccurance" im still with her.

Hugs
Beth

luvinlife2

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

herdizziness

Put that anger to good use
OMGosh, I'd be so furious too if that had happened to me. I hope you take that anger and focus it on the cancer still hanging in there, it makes it pretty rough that some doctor's ineptitude possibly caused the cancer to stay within, some physicians just aren't worth the paper their degree's are printed on.
I think it's great that they have both psychologist and nutritionist on staff, glad you will be checking them both out, always good to have everything in your arsenal when it comes to cancer and it's effects.
Winter Marie

tanstaafl

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

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

YoVita

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

YoVita said:

Good advice
for those of us with reoccurrence.

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

YoungerSis62

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

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

barbebarb

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.

steved

Angry
Pleased to hear you have found some one you can trust as a team as that is a vital part of feeling confident all that can be done is being done and their approach to the problem suits yours. It is always hard to question one's treatment and we all do it at times.It is also vital that you find a way of letting that anger go and focus again on a more positive future. It has a bad hbit of eating away at you and holding you back unless you can find a way of dealing with it. Perhaps talking to the psychologist may be a good way forward.

Doctors are only human and I don't know any who knowingly make bad decisions for their patients. they work within their abilities to help people and make difficult judgements constantly. When I first had cancer having only 5FU was the standard treatment pre and postop and I some times wonder if I had had oxaliplatin or something more back then would I be in the mess I am now. It is impossible to answer and unhealthy to dwell on those thoughts. my team made the decision based on what they knew at the time and did it in my best interest. Right or wrong it was what it was and I need to look forward at what can be done now.

Find a way of bringing positive feelings back into your day. RE-engage in things that you enjoy and give you pleasure now. Think about aims for the next three months. you will not regret taking steps to enjoy today. Let go of that anger as you can't change what has been but you can affect the here and now. Spending your current precious moments dwelling on things you can't change will be what you regret.

steve