12 months free of disease with clear CT scans: What is next?

Posted by lottie60 @lottie60, Mar 29, 2023

My husband has been clear of disease for 12 months with clear CT scans. The cancer disappeared after 12 sessions of chemo which the oncologist described as a miracle. He was diagnosed with stage four, mets to liver, however mets disappeared after 3 chemo sessions, he was not a candidate for surgery.
The CA19 market has been rising over the past 4 months, last result marker of 500 - a further CT and MRI later this month …..Oncologist states she will not act in CA19 marker alone. My husband is active, eating well and maintaining weight and feeling very well - we are a little concerned and wondered if anyone has the same experience
Thanks for any info

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marcia | @marciak9 | Apr 2, 2023

In reply to @frygirl777 "In your mouth?" + (show)

My tongue and lips

stageivsurvivor | @stageivsurvivor | Apr 2, 2023

In reply to @frygirl777 "I have ordered cold gloves & socks to wear during the infusions however I am concerned..." + (show)

For me gabapentin worked in relieving symptoms. It nor any other drug I am aware of will promote regeneration of nerve endings. For that I did activities to stimulate circulation in my feet like walking as uncomfortable as it was, walking on warm beach sand, soaking feet in warm water and frequently massaging my feet.

As for touching cold items and eating/drinking cold items, it was at the third infusion that intolerance to cold began. That included skin exposure to outside cold air during the times I received infusions during winter months. It required wrapping a scarf around my face to prevent cold air from triggering the facial nerves.

barbara333 | @barbara333 | Apr 2, 2023

In reply to @frygirl777 "In your mouth?" + (show)

It messed up my tastebuds

gamaryanne | @gamaryanne | Apr 3, 2023

In reply to @stageivsurvivor "When I was treated for metastatic disease to my liver from 2012-2014, I was aware that..." + (show)

@stageivsurvivor

When I was treated for metastatic disease to my liver from 2012-2014, I was aware that in many instances metastatic disease returned after completing the recommended 12 cycles of Folfirinox. From a professional career in clinical cancer and immunology research, I had an awareness of minimal residual disease (MRD) and what the term NED means. One question I had was why 12 cycles were chosen. Coming from a research background I assumed there were clinical studies done showing the efficacy of doing 12 cycles. Despite a lengthy search, I could not find any scientific paper giving the reason why only 12 cycles was chosen and what the risk is of MRD resurfacing.

My search led to some of the clinicians that did the studies on Folfirinox and comparison studies against Gemzar and Gemzar plus Abraxane. And what I learned surprised me. Twelve cycles was chosen essentially by a consensus of oncologists whose opinion was it being an amount that most could tolerate will having acceptable side effects-namely peripheral neuropathy for a patient to achieve NED.

The term NED can be misconstrued as being “cancer-free”. What it means is that the disease has been knocked down to a point below the detection limit (threshold of sensitivity) that current imaging can not see MRD. There can be circulating tumor cells or disseminated tumor cells that have found a location conducive to surviving. As long as one’s immune system is robust, the hope is that it will keep any of these cells in-check. If the immune system is challenged or weakens, micrometastatic disease that had remained quiescent can resurface and the same or another chemotherapy regimen needs to be implemented.

It was for this reason I advocated with my oncologist to go beyond the 12 cycles-essentially doing as many as I could tolerate in an attempt to destroy any MRD and truly be cancer-free as in cured. No one thought it possible being stage IV and Folfirinox was only FDA approved in 2011…approximately 9 months before I was diagnosed. I was 55 at the time and my physical condition was otherwise excellent. I had no other co-morbidities, never smoked, did not drink and had a healthy diet. My oncologist agreed and he decided rather than get continuous Folfirinox treatments every 15 days, after 6 cycles the Oxaliplatin and Irinotecan would be removed to give my body a rest and hopefully lessen the neurotoxic effects of the oxaliplatin. After six resting cycles, I went back on Folfirinox and this alternating dosing continued for 24 months until a total of 46 cycles were completed (24 of Folfirinox and 22 of 5-Fu with Leucovorin. After a two week wash-out period, I entered a clinical trial for maintenance monotherapy. At almost 4 years I achieved NED and at 10 years was being told by a number of oncologists they consider me cured.

Was it the additional Folfirinox I had, the targeted maintenance monotherapy or a combination of the two that achieved a cure is not certain. What I do know is that going beyond 12 cycles and looking for treatment beyond standard of care likely made the difference. It was challenging going through that length of treatment but my physical condition allowed me to persevere. For those whose objective is long-term progression-free survival and having no significant co-morbidities, they should discuss with one’s oncologist about going beyond standard of care. I am not a datapoint of n=1. I have meet others that we’re dealing with metastatic disease and advocated for doing beyond standard of care. As a result, they have survived 5 or more years without any signs of reoccurrence.

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I would also be interested in what mono therapy is for PCan and where it was administered for you.

krfinlayson | @krfinlayson | Apr 3, 2023

In reply to @frygirl777 "I have ordered cold gloves & socks to wear during the infusions however I am concerned..." + (show)

My cold sensitivity started after the second treatment. Even a cool breeze would affect my face, throat/neck and hands. I wore gloves to take thing out of the refrigerator or freezer. Scarves helped. The sensitivity would disappear before each treatment (usually a couple days before) and nurses would always ask. Dose can be adjusted throughout treatment. It was only towards the end that symptoms lingered. They also continued to worsen for about 6 months after finishing chemo. Best wishes!

frygirl777 | @frygirl777 | Apr 3, 2023

In reply to @krfinlayson "My cold sensitivity started after the second treatment. Even a cool breeze would affect my face,..." + (show)

Thank you for sharing your experience! 💜

frygirl777 | @frygirl777 | Apr 3, 2023

In reply to @barbara333 "It messed up my tastebuds" + (show)

Oh no! 😔

gardenlady1116 | @gardenlady1116 | Apr 4, 2023

In reply to @krfinlayson "My cold sensitivity started after the second treatment. Even a cool breeze would affect my face,..." + (show)

Thanks for sharing your story. I have had the same symptoms but they last longer than with the initial treatment. Hope you are doing very well at this time.

barbara333 | @barbara333 | Apr 4, 2023

In reply to @stageivsurvivor "These are some links describing pro-active measures to prevent/lessen peripheral neuropathy- NEUROPATHY PREVENTION WHEN TAKING FOLFIRINOX/ICING..." + (show)

The article on managing the neuropathy is most helpful. I had 10 or 11 oxaliplatin treatments and wound up with significant nerve damage. I list most all proprioception and the muscle atrophy was obvious from the nerve damage. My hands looked like my mother’s who lost nerves in her hands from polio. I stopped the oxaliplatin almost a year ago and continued with 5fu, campostar, and leucovorin. At the PET scan in October and again in February my cancer showed no growth. I am continuing on chemo and my Ca19-9 is down to 16. Do you know of any protocols as to how long to stay in chemo. I have spread out from every 2 weeks to every 3 weeks with the Ca19-9 continuing to slowly drop. Thank you fir any insight you can provide. My cancer is in operable. All detected possible metastasis areas are resolved.

stageivsurvivor | @stageivsurvivor | Apr 11, 2023

In reply to @bethf "Very interesting. Can you please explain what targeted maintenance monotherapy is and what the regimen/side effects..." + (show)

After I completed standard of care chemotherapy which was Folfirinox, the concern was what could be used after to ensure I not only stayed NED, but prevent a new primary cancer from developing. Maintenance monotherapy is a single drug regimen to keep things in check. Targeted maintenance monotherapy is when you have a genetic mutation, in my case BRCA2 and using a drug that specifically rages that genetic defect. The targeted drug is a PARP-1 inhibitor (poly (ADP) ribose polymerase) which prevents the PARP enzyme from repairing DNA strand breaks in cells. Because individuals with a germline (inherited) BRCA mutation have a lifetime risk of developing new primary cancers (pancreatic, prostate, colon, ovarian, breast, the objective on targeted maintenance monotherapy is to prevent new cancers from developing.

In patients doing SoC Folfirinox or Gemzar plus Abraxane, the concern is minimal residual disease exists. If one was experiencing side effects that were hard to tolerate, the incentive to do additional chemotherapy is diminished. Maintenance monotherapy using an oral medication may work differently than traditional IV chemo making it more tolerable and beneficial for long-term survival with a good quality of life.

Monotherapy means treating with a single agent and immunotherapy using a single component could be considered monotherapy. In my case, it was a single drug used after first line chemo drugs were used as post-chemo treatment. Immunotherapy can be used in a first line or second line treatment. For pancreatic cancer, the immunotherapy drug Keytruda (pembrolizumab) is the only FDA approved immunotherapy. The others are being used in clinical trial settings.