Chemo break: how quickly do tumours grow back?

Posted by Peter S (Aussie) @spicerpa, Jan 19 1:52am

Hi

I am currently on a chemo break after 6 months of treatment. The chemo has been fairly successful in terms of shrinking tumours in my liver and pancreas. My last chemo was mid December 2023.

My next CT scan is on 12 February and catchup with my oncologist on the 14th.

I assume everyone's scenario is different, but does anyone have any experience on how quickly the tumours regrow or spread to other places and what I should expect on the 12th Feb?

thanks

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It seems more that every doctor/hospital is different. I was never given an option for a chemo break unless I was undergoing another treatment like radiation. Occasionally, since chemo was/is working, I would ask for a week off so I could attend a big family event. But it sounds like chemo will continue as long as it is working…

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@robee , that is our decision as well, and our oncologist agrees. As long as the chemo is working, I'm going to keep it up. I'm thinking about it as medication for a chronic issue; I take pills for other things daily, so I take chemo every other week. If/when it stops working, as verified by CA 19-9, CT scan and onset of symptoms, then we'll consider shifting our approach. FWIW, next week's chemo will be round 18. I'm currently on modified Folfiri (no oxaliplatin).

That said, a lot of people post that they stop/suspend chemo after a much shorter series of chemo treatments. Twelve, in particular, seems to be an operative number for Folfirinox. And there are others who post about having radiation treatments and surgery, none of which I qualify for but have certainly asked about. Long story short, pancan treatment seems to be very individualized, depending on the patient's situation and the oncologist's stance. @spicerpa, I think it would be difficult or impossible to predict how your tumor might change during the chemo break. But your post makes me think that you're concerned that your condition might worsen during the break. If so, I urge you to get in touch with your oncologist to discuss this. We pancan patients have to work very hard for treatment gains! And if you're concerned that you might lose ground, you have every right to push for an earlier scan, a second opinion, resuming treatment or whatever you want/need to explore.

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While I am not a medical professional, my advice is always the same - remain on chemo until you cannot, any longer. Modify the mix, but keep trying to kill the tumor and the mets that you may not know about and the cancerous cells that may still be in your system.

If you are not being treated at a pancan center of excellence, please consider relocating to one.

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There is no way of knowing when and if tumors will reappear. Close surveillance is the key if one takes a chemo break. Thus-if a tumor is found in 3 months one hopes it is early stage and chemo or surgery will resolve it. We do have to live our lives so family time is crucial. These pancreatic cells hide craftily and so one must be working with oncologists that are watching you closely and know when it is time to change therapies. I am at a juncture now, having done fulfurinox and gem/abraxane, to pursue what is best next step for me. I do not think this is a “one and done” cancer. We have to be vigilant but also engaged in life, make healthy choices, and make happiness in each day. Tall recipe but I find it’s worth it!

If you haven’t, might pick up one of Bob Goff’s books. I’m reading “Undistracted”. It’s great!!

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After my experience, I'm afraid to take any chemo break at all.

My Whipple for Stage-II was considered "perfect" (R0 resection and 22/22 lymph nodes clean). MRI and CA19-9 a month after Whipple agreed, as did 3 DNA-based blood tests (1 Galleri and 2 Signateras) and a biopsy over the next 3.5 months.

BUT, despite all the NED suggestions above, MRI discovered tumor recurrence at the original site that went from non-existent to 1.3 cm in 3.5 months since the previous MRI. In hindsight, that seems like a pretty fast growth rate. 🙁 After 6 more weeks to redo MRI, Signatera, and CA19-9, the tumor was 2 cm with at least one met in the abdomen before I resumed chemo.

A full year of chemo (26 biweekly treatments of Gemcitabine + Abraxane + Cisplatin) has kept it mostly in check: A few new mets early on, but stable or slight shrinkage over the last ~8 months.

So I'm at a huge crossroads today... Two oncs are suggesting I cut back to a maintenance therapy, which would (ideally by them) be Gemcitabine only. (ATM mutation here, not amenable to PARPi as maintenance.) At the same time, I think I can now get into a clinical trial that would require me to be off all chemo for at least 3-4 months.

Both oncs agree that I'm responding so well to the current chemo that it would be risky to come off for an unproven trial. Part of the justification for a trial (even though I have not progressed and am basically "stable") would be to give my body a break from the chemo-induced neuropathy and anemia, but I'm actually handling it well enough to keep going at the full dose.

Going on Gemcitabine alone seems almost as risky as going chemo-free, so that's a non-starter. If I don't do the trial, cutting Abraxane and Cisplatin by 50% is as far as I'm willing to go.

In fact, I would be willing to try piling an additional therapy on top of the current therapy to deliver a knockout blow rather than just cruising along as "stable."

As @ncteacher said, I'm also resigned to viewing this as a chronic condition that requires ongoing treatment. That would be the biweekly chemo unless insurance quits covering it or a better treatment comes along.

The fast return, growth, and spread of my cancer is a big reason I advocate for everyone doing as much up-front work (monitoring, testing, seeking out trials and treatment centers) in parallel as possible, to avoid long, serialized delays before attacking the real problem.

@stageivsurvivor 's 2-year chemo beatdown of his tumor serves as a huge motivation for me to consider doing the same.

Wishing you the best, @spicerpa , and hoping your cancer went on vacation along with the chemo.

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I am taking a "break" from Gemcitabine & Abraxane. Had 44 treatments from July 2022 thru December 2023. Had 2 consecutive CT scans that showed no tumor in the pancreas. I felt I needed to take the long break due to the neuropathy and becoming more fatigued. I will be getting monthly labs to include CA19-9 and CT every 3 months followed by a doctor visit. The AON (oncology nurse) will contact me monthly or if I have any concerns I can call or email her anytime.
I think each patient and their oncologist will experience different treatment plans. I can only hope that I chose the right one for me but I think we all experience that fear of "Did I do the right thing?"

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Thanks everyone for your insightful responses. It is a bit of a strange thing to say but having chemo every fortnight became part of my life… a medical week and a non medical week. Given I am retired it helped fill in my calendar given when I got diagnosed I had to give up a few of my hobbies / interests (flying, some charity board positions)… I now compulsively watch YouTube videos on how to read a CT scan, how to do a wipple operation and various other medical things which I am interested in. I clearly need to find some new hobbies 😃

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I asked for two week breaks to go to spring break with grand kids and to go visit my kids. Nothing like months though just a few weeks. My tumor shrunk by 70% during chemo and it was only on my pancreas head. I then did radiation and had the Whipple. So for me I started March ended July with chemo. Did radiation three weeks August and had it removed October. That was two years ago. I just came back from Mayo last week scans are good nothin anywhere. Counting my blessings.
Everyone is so different it’s hard to say what they will find. Is there a reason you don’t want to continue chemo? I know it’s very brutal. If I hadn’t had all the support I did not sure how it would have turned out. But taking a break is necessary for mental and physical health. I get that totally. And I think breaks need to be a part of the treatment. Best of luck to you!

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I’ve taken time off anywhere from 2-5 weeks for vacations. I had no problem with spread as my Pancreas cancer is a rare form called Acinar and not aggressive as the other types.
I’m currently at the end of 28 radiation and Chemo pill then I’ll be taking 4-6 weeks off with no treatments. Then I’ll do MRI to see how I’m doing and then possible surgery. 🙏🏻❤️🙏🏻

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@markymarkfl

After my experience, I'm afraid to take any chemo break at all.

My Whipple for Stage-II was considered "perfect" (R0 resection and 22/22 lymph nodes clean). MRI and CA19-9 a month after Whipple agreed, as did 3 DNA-based blood tests (1 Galleri and 2 Signateras) and a biopsy over the next 3.5 months.

BUT, despite all the NED suggestions above, MRI discovered tumor recurrence at the original site that went from non-existent to 1.3 cm in 3.5 months since the previous MRI. In hindsight, that seems like a pretty fast growth rate. 🙁 After 6 more weeks to redo MRI, Signatera, and CA19-9, the tumor was 2 cm with at least one met in the abdomen before I resumed chemo.

A full year of chemo (26 biweekly treatments of Gemcitabine + Abraxane + Cisplatin) has kept it mostly in check: A few new mets early on, but stable or slight shrinkage over the last ~8 months.

So I'm at a huge crossroads today... Two oncs are suggesting I cut back to a maintenance therapy, which would (ideally by them) be Gemcitabine only. (ATM mutation here, not amenable to PARPi as maintenance.) At the same time, I think I can now get into a clinical trial that would require me to be off all chemo for at least 3-4 months.

Both oncs agree that I'm responding so well to the current chemo that it would be risky to come off for an unproven trial. Part of the justification for a trial (even though I have not progressed and am basically "stable") would be to give my body a break from the chemo-induced neuropathy and anemia, but I'm actually handling it well enough to keep going at the full dose.

Going on Gemcitabine alone seems almost as risky as going chemo-free, so that's a non-starter. If I don't do the trial, cutting Abraxane and Cisplatin by 50% is as far as I'm willing to go.

In fact, I would be willing to try piling an additional therapy on top of the current therapy to deliver a knockout blow rather than just cruising along as "stable."

As @ncteacher said, I'm also resigned to viewing this as a chronic condition that requires ongoing treatment. That would be the biweekly chemo unless insurance quits covering it or a better treatment comes along.

The fast return, growth, and spread of my cancer is a big reason I advocate for everyone doing as much up-front work (monitoring, testing, seeking out trials and treatment centers) in parallel as possible, to avoid long, serialized delays before attacking the real problem.

@stageivsurvivor 's 2-year chemo beatdown of his tumor serves as a huge motivation for me to consider doing the same.

Wishing you the best, @spicerpa , and hoping your cancer went on vacation along with the chemo.

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Was your initial diagnosis stage 2a or 2b? Did your cancer come back in the area that was actually removed?

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