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Stage IV input needed

PamRav's picture
PamRav
Posts: 244
Joined: Jan 2017

i was diagnosed Stage IV in January 2017‘,  rectal cancer with mets to liver. I‘ve had Chemo, then surgery ( bowel resection, liver resection and liver abalation), chemo, another liver abalation, more chemo.  I was NED for a year, ca returned august of last year, this time in my lung.  Idid FOLFIRI with Avastin from Aug 2018 to Jan 2019. Then did maintenance from Feb to june when i received a chemo holiday due to hi BP and hand and foot snydrome.   My latest scan the end of July showed no active ca. 

Question...would you begin maintenance again or wait for a reoccurence. My oncologist has left me this decsion.  Apparently there are no definitive studies. 

I hate to return to chemo now because I'm feeling so good, but worry about the next reocuurence 

Any thoughts, suggestions, experiences would be greatly appreciated 

Trubrit's picture
Trubrit
Posts: 4784
Joined: Jan 2013

That is a very hard decision, and I wish you all the best as you move forward. 

I really don't know what I would do.  It is easy to say 'follow your gut instinct' but so hard to actually do that. 

Whatever decision you end up making, you must promise yourself not to look back with regret if things go south. 

How long would maintanace chemo be for?  There are some here who are on chemo for life, and are diong quite well - PhillieG comes to mind as one who has been on it the longest. 

Obviously try to do the best you can with diet & exercise. Keep happy and positive. Beyond that, I really can't advise you. 

Tru

abita's picture
abita
Posts: 585
Joined: Dec 2017

Going to preface this with I am praying that the chemo I am on now gets me to your current state. So I have been thinking about this a lot.

Did your oncologist say it is possible there will not be a recurrence, or has he said that since not surgically removed, there will be a recurrence at some point? I think, if the former, I would then ask if doing a bit more maintenance will make the possibility of no recurrence even stronger. If the latter, I would ask how often the scans will be, how much they could grow in that time, and would you be able to start chemo right away if the scan showed recurrence.

Chemo breaks are nice because gives your organs time to heal from the chemo, you can get your teeth cleaned, you feel better, so many things. 

I know my answer is just what next questions to ask. 

 

Annabelle41415's picture
Annabelle41415
Posts: 6153
Joined: Feb 2009

I'm sorry that you have gone through this rollercoaster, but glad to hear that your last scan came back with no active spots.  It's going to be a very hard decision to decide whether maintenance treatment will be beneficial to you.  My radiologist oncologist point old told me, "if it were him, he'd do the chemo."  I'd probably throw it back at the oncologist and ask their opinion again.  They have seen more cases of your type than you and they could give you an opinion.  If you aren't happy with that, maybe seek another opinion.    Wishing you the best.

Kim

Kazenmax's picture
Kazenmax
Posts: 343
Joined: Feb 2016

My situation is similar but different. I was originally diagnosed with stage 3 rectal cancer. Did half the recommended radiation/chemo because of a fistula, had APR surgery to remove rectum, sphincter, et all with permanent colostomy and follow up chemo (5fu, oxi and xeloda). After which I was good for about two years with 3 month scans, 6 month scans. Cancer came back in my left lung. Had surgery and followed up with (5fu, xeloda, avastin and 2 treatments of irintecan). I’ve had two scans NED. I was not offered anymore chemo and actually had my port removed. I’m on 3 month check/scan for a year, then 6 months, then yearly. I guess my doc does the wait and see if it comes back.

Are you on the 3 month scan schedule? I should think a break would be ok, especially if your doc agrees. Realistically if it were to come back, the scan would find it quick enough, but I can understand your concerns. Whatever you decide, I hope you continue to be NED.

k

SoCal42's picture
SoCal42
Posts: 21
Joined: Jul 2017

My history is almost exactly the same as Kazenmax, except I also had stereotactic radiation to my two metastatic tumors in the lung. (A third metastatic tumor in the lung was removed during a biopsy). I am now near the end of six months of FOLFIRI + Erbitux, and my doctor has said that if everything looks improved/stable, she will plan to stop all treatment and start following with periodic CT scans. She felt there wasn’t good evidence that doing any further maintenance therapy at that point would be helpful if there’s NED.

PamRav's picture
PamRav
Posts: 244
Joined: Jan 2017

 

 

for everyone‘s input. REALLY good advice, you’ve helped me formulate a more concise list of questions for my doctor.

 Im leaning towards no maintenance chemo unless my doctor can provide me with compelling evidence why I should take it.   Also decided its time for another second opinion.  Thinking about Johns Hopkins as its not too great a distance to travel  

I have been scanned every three months since diagnosis and I anticipate the schedule will remain the same 

Abita, my wish for you, is that you get even better than me    Glad to learn that your current drug is working 

And Tru, I promise I won’t look back after the decision is made 

peace to all

 

Tom M.
Posts: 33
Joined: May 2019

Pam I am 3/4 done with my chemo ordeal. Colon Mets to liver. Go with your gut feeling. Trust in God. Ask Him to help you with your decision. I will keep you in my prayers for a positive outcome. Always stay up beat. Best of luck to you.    Tom

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