do or not adjuvant chemotherapy post surgery for pancreatic cancer (pT1c N0 M0)

[rodrigo1111]

My mom a healthy 69-year-old individual just got a resectable cancer removed from her pancreas tail. It is very rare to find a cancer like this at  stage (1), we’ve been very lucky for now.

We conocerned rights now is that if the chemotherapy is really mandatory because the majority of the doctors are suggesting a preventive chemo scheme, which is the same scheme applied to metastatic pancreatic cancer. We are not confidence enough if these prevention medicine could we worst than the disease itself, since nobody could guarantee you, the cancer will or not come back post-surgery nor post the chemotherapy. Our biggest fear is to make the cancer chemo resistant from the early stages if it comes back due the preventive chemo plus all the side effects of it. (we attacking the cancer with the most powerfull chemo used in the metastatic phase, what would we have left if the cancer not responding from the beggining)

Would love to hear from people who shared similar stage 1 cancers and what did they do at the beginning.

[kj]

Hi Rodrigo 1111

When in my sixties I had Whipple surgery for cancer in head of pancreas followed by gemcitabine chemo 12 years ago,I survived,There are a number of different chemos available for your mum,as to how her body responds to the effects you can’t tell until it’s taken,I’m not sure if they use a very strong chemo before the metastatic stage as there are guidelines on there use,I was sick from chemo but the results are there for me,

During my cancer journey I met  12 people with This cancer in the-head and one with it in the tail,only 3 of us could have surgery , so that’s a good start for your Mum,following up with chemo is the best chance of survival,getting in early if there are any cells left,That’s my humble opinion,I was told after surgery the cancer was in my spider veins and the surgeon couldn’t remove all ,During treatment I was told I was terminal but obviously the chemo helped mop up the cells,

Have a robust discussion with her oncologist for their thoughts .

I wish your Mum all the best in her decision of what is the best way for her to make this decision on her treatment 

Yes their is no guarantee of success,but surgery and chemo are the best chance forward .my chemo strength was made to how I was physically at the time to enable me to get through the treatment sometimes strong sometimes a bit weaker.

good luck

kj

kj

[rodrigo1111]

Hey Kj!

I’m very happy to read your answer, glad you did make it to beat this nasty disease!!!

Regard the undergo chemotherapy you were put through; I really like to know if you don’t mind me to ask, you did 6 months once with gemcitabine? What you did back then in parallel to fight the toxicity effects of the chemo?

Your testimony is similar from a closed person of mine, who did the Whipple surgery + gemcitabine 15 years ago and beating the disease till today.

My concern is that nowadays the current guidelines seem to suggest a much toxicity chemo scheme (Folfirinox or mFolfirinox) which is the same suggested to metastatic estadio of the disease which it’s not my mom’s current state. It will all depends on how well she can tolerate it (she overall healthy patient), I believe she will be fine, but we are still very worry on the side effects of these chemo scheme. On my mind, I want to believe gemcitabine which is has less toxicity would be enough for her, as this is suggested as preventive chemo treatment, but in the bottom of my hearth I know you can’t give any inches for this horrible disease to gain strength…

Other that’s comes on my concerns and which maybe you have some better understanding, nowadays I’m assume you control the disease with periodic checks on the CA 19-9 level plus CT Pet/ Magnetic resonance.

My mom’s CA 19-9 levels were:

Pre-surgery CA 19-9: 49.7 U/mL

1-week post-surgery CA 19-9:  41.9 U/mL

1-month post-surgery CA 19-9: 44 U/mL (it did go up!)

We were really hoping and expecting that the CA 19-9 level went down post the surgery, but it didn’t, some doctors told us before that it would come down to normal levels post-surgery (=< 27) others saying this is normal, I been reading patients have worst prognosis when this level doesn’t come down post-surgery but I’m not losing hope on this!

For now I’m aware we are in a good position in this fight, and that its just about to start!

Wishing you nothing but the best, and really appreciate your kind words

Rodrigo

[kj]

Hi Rodrigo

I started chemo 2 months after Whipple ,as I needed prostate surgery before starting chemo,which wasn’t cancer related,I don’t recall my CA19.9 but before surgery I needed a stent put in as my levels were high,The longer Gemcitamine chemo went the sicker I became from the effects ,my oncologist dropped the strength a number of times so my body could cope,but we all respond differently to the chemo,I believe it is not as strong or as harsh,as the other treatments ,a friend who had a Whipple at a similar time as myself had the same chemo and got through without any problems,12 months later she needed folfirinox,and had side effects,that chemo has more effects on the body ,from my experience of talking with others who were on it,it’s a good start your Mums  is not metastatic.

Folfironox has more potent side effects and was usually used later in the disease if needed,but that was many years ago,my oncologist 12 months ago said to me they now treat pancreas cancer differently now with chemo,when we talked about the newer ways of treatment.

You are so right you can’t afford to give this cancer any inches or time to come back.

I can’t say what my CA19.9 were after surgery as I had severe complications after my Whipple in hospital and was trying to recover from what happened.I do have CA19.9 testing every 6 months ,currently my reading is 17.A CT scan was used regularly to check on my progress as well as CA 19.9 tests

Because of Covid I haven’t had a Ct for over 12 months,I do know what to look out for on a reoccurrence ,so I am vigilant but not over stressed.

I believe many factors can influence a CA19.9 reading ,so fingers crossed that it’s a temporary rise in your Mums ,hopefully whatever chemo is chosen for  your Mum it works on cancer cells if any are left,and that the side effects are not too harsh on her.

I send my best wishes to you and your family in the fight against this disease.My knowledge is limited but if I can be of any assistance just ask.

kj

[rodrigo1111]

Thank you Kj for your time and kindness , it’s nice to know your CA 19-9 are under control , and so they will be , all the best for you and your loved ones 🌹