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Saw my Oncologist Yesterday-more opinions please

Lilmiss82's picture
Lilmiss82
Posts: 257
Joined: Dec 2009

So I had an appointment yesterday to see my doctor and was prepared to bombard her with my list of questions. She walked trough the door and before I could pull up my list of questions she said I have good news but you might think it's bad. She stated that she attended a conference and spoke to several colorectal cancer oncologist regarding my situation. She told them of all the treatments I had received ( from chemo/rad, to having all visible tumors surgerically removed, to receiving 6 months of FOLFOX6 and was currently on Avastin to continue NED). She stated that all the specialist she spoke to recommended that I stop receiving Avastin as many studies have shown that it is not very effective when given alone. Those who are receiving Avastin alone as maintence chemo to stay NED are NED becuase the standard treatment of "heavy" chemo did its job of killing all microscopic cells. If I didn't want to stop getting Avastin, I would need to add the 5-FU and luecovorin back in the mix, but if I chose to do this I risk the fact that if my cancer returns these drugs maybe useless as I might become immune to their effectiveness. What is a girl to do?? She also mentioned that Folfox6 should keep me tumor free for 6 months after my last infusion on it. My last infusion was in June so I should be NED until December. If the cancer returns before December or shortly after the 6 month window, my prognosis would not be good. She stated that it would not be a good prognosis because it would prove that my cancer is very aggressive and the fact that I am a Kras mutant limits my options. So guys what do you think??

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

QUOTE..."She stated that all the specialist she spoke to recommended that I stop receiving Avastin as many studies have shown that it is not very effective when given alone. Those who are receiving Avastin alone as maintenance chemo to stay NED are NED because the standard treatment of "heavy" chemo did its job of killing all microscopic cells."..end quote

Remember, This is just my opinion and it doesn't mean squat but since you asked....To me that is an oxymoron statement...if they all believe that is true then why are their patients on Avastin alone ? or why aren't they all on the same page with this. Avastin is keeping it stable but naw really it was the Folfox that killed all cells and the Avastin is simply a high price placebo ? So what I think I hear is that she is trying to persuade you to get off the Avastin and wait 6 months and hope for the best ? or add Leuc/5fu with the Avastin and hope it doesn't come back ? How long have you been on plain Avastin and how long have you been NED. If you aren't particularly happy with the choices you need to make then get another opinion...Its normally a phone call away...

Questions to ask yourself.....1- are you satisfied with the treatment regimen you are receiving now enough to stay with it...
2- would you want to gamble if things are doing well for you now to stop Avastin and risk a re occurence within the 6 month waiting period...
3- What can a new opinion offer as far as helping you in making these decisions...
4- Do you think your Onc is second guessing her treatment options...

They work for you in keeping you in the best quality of care they can offer...But remember, "sometimes" shopping at another store you can find better bargains....Love and Hope to you and yours, Buzz

Lilmiss82's picture
Lilmiss82
Posts: 257
Joined: Dec 2009

First let me say Your opinion is soooo valuable!

I started Avastin the last week of July and the original plan was to receive it for 6 months and then go from there. I had everything surgerically removed 1 yr ago and stopped FOLFOX this June. I did kind of feel that a recommendation to stop Avastin might be related to cost, but then again I really like her (the oncologist) and want to believe she has my best interest in heart. I want to do the right thing but I don't know what that is. I can't understand how some people go through treatment and never have to anything ever again and while others do everything possible and nothing seems to work. Also, I know that as a stage 4 patient that the risk of reoccurance is so high. I feel like I'm stuck between a rock and a hard place.

lesvanb's picture
lesvanb
Posts: 911
Joined: May 2008

just lost what I was typing and hsould do what Buz has often said not type first here...

Boy that is a hard question to answer...

I am also KRAS mutant. Quality of life and longevity are my goals. The short answer for me, now dealing with a progression in my lungs, is that I always want to stay off chemo for as long as I can. I want to keep physically strong and work out, eat well, sleep well etc. I have 2 bilateral lung nodules that are under 1 cm and metabolically active found in June PET/CT. Sept PET/CT shoes more metabolic activity but very little growth still all under 1 cm. Radiologist says 80% it is cancer.I will be starting a UKansas clinical trial protocol this week of IV Vitamin C for which I am apparently and ideal candidate-metabolically active tumor and small. As my onc says we can save the chemo big guns for later down the road. I have also opted out of a lung biopsy which would have to be VATS, major surgery, since compromising my immune system and traumatizing my lungs just sounds creepy. Also as my onc says if there is growth maybe we can needle one. If I get a biopsy I also want to have in place the process for sending the tissue off for genotyping (www.weisenthalcancer.com or http://www.carislifesciences.com/client-services (thank you snommitj!)

I hope describing what I'm thinking helps with your decision-making.

all the best, Leslie

Lilmiss82's picture
Lilmiss82
Posts: 257
Joined: Dec 2009

May I ask you how long it took for the reoccurance to pop up? Do you too have everything removed, followed by chemo and no maintence? Or where you doing maintence and it progressed while in treatment? That's funny you mentioned the genotyping because about an hour ago I sent an email to my oncologist asking if I could use this service if worse came to worse.

lesvanb's picture
lesvanb
Posts: 911
Joined: May 2008

Recurrence was 1.5 years from liver resection (had LAR too before that); 1 year from end of chemo. Doctors said NED after liver resection. I was not on maintenance chemo. I had no Avastin with FOLFOX. We all were hoping for cure and we all were surprised by recurrence because I am in good health and very active– blood work good, only have some slight residual neuropathy on soles of feet plus bowel issues but not bad.

all the best, Leslie

Lilmiss82's picture
Lilmiss82
Posts: 257
Joined: Dec 2009

I too didn't get the Avastin during Folfox. We tried it once but my liver couldn't handle it since it was regenerating fast enough after the resection. Man, after you were NED for 1.5 years that must have been tough

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Has your onc talked to you about Folfiri at all? Irinotecan-Leucovorin-5fu pump?

That's the I'm on now. I did Folfox-Xeloda-Avastin back in 08. The way I understand it, is that Avastin packs a more powerful punch when combined with either Folfox or Folfori, rather than just being given by itself.

I have heard of Avastin just being used by itself though. I can understand wanting to hold another chemo regimen to use, just in case.

There's no guarantee that anything new will pop up in six months - it might be longer or not happen at all. During my stops, I've had good stretches that lasted 18 months and I've had some around 6-8 months.

I'm on recurrence #3 now....I'm of the school that the ATTACK is NOW, if possible rather than waiting. I mean if it's there, then let's go ahead and get after it. If we're watching and waiting, well I've used that strategy before as well.

All of it got me to where I'm at right now - and I'm in a hard place, and we've got cancer present and active, so I'm firing my bullets right now and emptying the chambers. I just got tested for KRAS and was negative, so we've got Vecitibix in the arsenal if I need to go there.

Another opinion is always a viable option, just to get a handle. Different oncs, different protocols. I left my old practice because of incompetence and negligence and hooked up with the best hospital in our area and my cancer center just got promoted to NCI status, so I feel I'm getting good care and me and the doctors have a good "give and go" happening and we talk about all of it.

I called my onc "a hard man" and he told me I was too, LOL:)

In thinking about Avastin vs 5fu...I'll have to think some more on this...not sure what would be the path I would choose for either myself, much less you. I don't want to steer you wrong, I like you way too much:)

Think about a 2nd opin and if not, carefully weigh what you've heard and just make sure you are comfortable with what you've told and that you believe - that's the big thing, we all have to be on board with the decisions that we make. Once we make them, we can't go back. But there is no direct flight path to NEDSville, we're all doing the best we can to find it.

Thanks for your kinds words on your other post - I wish so much for you!

-Craig

AnneCan
Posts: 3692
Joined: Oct 2009

Good news on the KRAS front; I am happy for you!

Lilmiss82's picture
Lilmiss82
Posts: 257
Joined: Dec 2009

Hoping for more insight:)

C Dixon
Posts: 202
Joined: Jan 2010

Hi,

I think it would bother me that my Onc had to go to a conference to find these things out. Additionally her sample of opinions is limited to who attended that conference. Having said that, it is nice that she is thinking of you at a time other than having you in the exam room.

Have you yourself gone for any type of second opinion from a major cancer center? Where are you located?

I think my next move would be to get to the best facility that was within my means and ask these questions of a Colorectal Oncologist.

I have gone through Folfox and Folfiri - 12 rounds of each. After each I had a recurrence within 3 months but they were followed by surgeries. I didn't do any kind of maintenance chemo and it wasn't really discussed because we wanted to see what the cancer would do. I have known mine is aggressive from the start due to the pathology report on the original tumor.

I don't think I would do anything different though because no maintenance has allowed me to have the HIPEC and the liver resection. Now I am having radiation to my liver to get the microscopic cells left behind. I suppose now we will be talking about Folfox again with some kind of maintenance chemo after that. I just can't stomach the idea of being on Folfox indefinitely.

Anyway, back to you. Have you looked into vaccines? I know at Duke they are having trials of vaccines against colorectal cancer for those who have achieved NED status and the results are promising. These are the kinds of things you find out about at major cancer centers that local oncs (no matter how dedicated they are) just don't know.

Take Care,

Catherine

maglets's picture
maglets
Posts: 2596
Joined: Jun 2006

just a couple of things to add. It does not bother me that your onc went to a conference and discussed your case....the field of oncology must be so huge and swiftly moving. I remember in 2005 when I had my first colon resection I started 5 FU and leucovorin but had almost an allergic reaction to it with burned out skin eyes all soft tissues. My old and very experienced onc went to talk to others.

I have never done avastin with my oxy ....just oxy plus xeloda...after the second liver resection. I think my onc like others is trying to save some things but there doesn't seem to be enough money provincially to test for kras.

I really wish I could be of more help....sometimes just yaking away with others in similar situations helps....

all the very best....and hugs

mags

AnneCan
Posts: 3692
Joined: Oct 2009

Have you tried recently to ask about kras testing? I think things have changed a lot in this area in the last few years.

maglets's picture
maglets
Posts: 2596
Joined: Jun 2006

i asked last december Anne and the answer here is O Sound was no

mags

AnneCan
Posts: 3692
Joined: Oct 2009

I wish I could offer you some brilliant insight on this, but it is definitely outside my knowledge area; I am currently on folfiri + avastin + have had no surgery for my tumours, primary or mets. I am thinking about you lots though + hope you are guided to some additional insight.

geotina's picture
geotina
Posts: 2120
Joined: Oct 2009

My understanding of Avastin is that it is a tumor starving theray. Avastin can starve your cancer of nutrients and oxygen it needs to spread. If you do not have any mets (tumors) then why the Avastin alone?

That being said, like Craig, I have heard of a few people on Avastin alone.

My hubby's cancer was widespread and after Folfox and Avastin he is now on maintenance chemo of 5FU, Leucovorin weekly, infusion takes about 30 minutes, adding Avastin every other week. His side effects have been minimal to none and he continues to work full time. He is quite fatigued the evening of his infusion day. So far, it is doing its job at keeping his cancer from spreading, keeping it stable, and he continues to show improvement as far as mets continuing to shrink and disappear. He has never been free of this disease and probably never will be.

You current status is NED but your cancer was Stage IV which typically has a high recurrence rate. Weigh your options carefully and seek the advice of a second opinion at a cancer center if possible if you are undecided as to which course of treatment to follow.

Wishing you continued remission.

Take care - Tina

Betsydoglover's picture
Betsydoglover
Posts: 1256
Joined: Jul 2005

Well, it's really hard to know. I am sort of a poster child for Avastin only - been on it for 16 months (first 4 with Xeloda). Our plan is sort of "avastin forever" (my words, not my onc's, but she loves it when I say that). Dr. John Marshall at Georgetown has a group of Stage IV patients who are maintaining NED on Avastin only.

See my signature - in my case who knows if the Avastin is helping or not, but I am surely pleased with my status. I'd be scared to stop because I am doing so well.

Betsy
diag. Stage IV, 5/05, liver met
lap sigmoid colectomy, 6/05
6 cycles Xeloda/oxaliplatin/Avastin (NED after 2)
11/08 9x13mm right lower lobe lung nodule; removed via VATS 4/09
6 cycles Xeloda + Avastin,
NED (PET every 3 mo)
Currently on Avastin only

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

Ya know what ? I will tell you this...This was my 1st re occurence ...met to the lung. its gone no nodes involved and clear margins but it was a met.....now, the top priority is to prevent re occurence of cells and then nodule or tumor or mass...question ? what makes you most comfortable in all of this....being on avastin...or not...My post op folfox did keep it at bay until I got finished with that 6 months of treatments...I think that there were a few cells that simply buried up and went dormant for that 6 months until the chemo barrage was over and then started division until viola a tumor was born. This tumor grew to 1.4 cm before my CEA picked it up...it was 2 years after my first surgery..scans would have caught it much earlier. in either way it was removed...now, to sit back and do nothing only invites trouble. I will be sure that ct scans are done on at least 6 month intervals if not sooner, but the maintenance chemo, not sure what I will do yet. I will know Monday though, some big decisions to make but they are ones I will have to make and live with right or wrong. My point, make your decision and never look back on whether or not you made the right one or not, but as you do intermingle quality right along with quantity, for if I am sick everyday and can't work, get out of bed, or play with my kids, then I will not prolong suffering for them or me...My BIL, SIL, sisters and brother have all told me after speaking with them all that my wife and children will never go without...That helps me in some of my decision making. You are certainly smart or you would not have made it as far as you have through this already, so put your heart in a safe place, and use your intelligence to make your informed decision,normally the best one. Then bring the heart back in and move forward with the ones you love with a plan that has been thought through and decisively made, .then you control your own destiny, cancer is only along for the ride, it has no say anymore, its all controlled by your choices..and never ever look back..Love to you and yours.....Clift

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

My onc, is hoping I get surgery, so that he can start me back up on Avastin and Avastin ONLY. And as well as he has done with me. I plan on doing it.
Winter Marie

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