Hello and welcome
Let's pull up our chairs in a circle and check in with each other and talk about how we are doing with our NET diagnosis. Any new tests, meds or treatments going on for you? What about your symptom control? Any concerns you have?
Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
Oh, I can so understand your concern! So many of us with a NET diagnosis have worries and concerns regarding having a diagnosis such as this and when there are multiple locations for the NETs it seems even more worrisome. I would like to introduce you to @patrick031621 who has had a NET diagnosis for 19 years now with multiple tumors in different areas. I hope that he will share some of his experiences with you. I would also like to invite @kim1965 and @gneiss50, to post with you. They have also had multiple NETs.
You might also find Mayo Clinic's NETs support group helpful to you. (It is not necessary to be a Mayo patient to attend this group.) Have you attended this group? It meets virtually, via Zoom, on the first Thursday of each month at 5:30 EST. Here you will meet with other NET patients who share their journey during the meeting. Look for information about the next meeting in the NETs discussion group. I'll be sure that you get the notification.
As I learn more about your journey with NETs, I'll connect you with other members who have a situation similar to yours. You mention that you had chemo last year. What type of chemo was it? Are the injections that you are starting this week Octreotide or something else?
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Hi @sweet 63,
My wife Kim was diagnosed with NET in April of this year. We were devasted at first, after all the tests, it was determined that she had NET's with numereous spots all over the liver and a mass attached to the tail of the pancreas. The best news was that it was NET's, and not the more often diagnosed pancreatic cancer. NET's has a much better prognosis over 5 years. Our Cancer Care Team from Froedert Hospital in Milwaukee, had her start chemotherapy by pill, and after 3 cycles, there was 50% reduction in the tumors on both liver and pancreas. Now after 3 more cycles, there has been more reduction around 20%, with the plan to continue the chemotherapy until there is no more reduction, as she has been able to tolerate the pill version of chemothearapy well enough to continue part-time work through it all. At that point the plan will be to remove the mass on the pancreas, and reevaluate next steps. The cancer care team has repeatingly mentioned that they believe they can kick this down to a maintenance issue decades down the trail, answering our prayers for a promising diagnosis long term. NET's as we read is in only about 2% of the cases, and consider this a true blessing to allow her a fair fight to at least knock this down to allow for her to live a full life. Stay strong, there will still be good and bad days, but you will make it.
I so appreciate your encouraging post to @sweet63. I'm so glad that your wife has done so well. Yes, having a NETs often has a much slower growth than other cancers.
How is your wife feeling now? You mention that she is taking chemo by pills, do you mind sharing the name of the chemo medication she is taking?
Absolutely, she is on a two week cycle on and two weeks off of chemo. For all 14 days of the cycle she takes Capecitabine 500mg tablets, and from day 10 – 14 of each cycle she takes in addition to the Capecitabine, Temozolomide 100mg tablets. She has completed six straight cycles since April diagnosis, with a probable continuance until there is no more improvement, then possible surgery on the mass around the pancreas once it is the smallest the chemo can get it. Our follow-up with Froedert is November 29th, to make final decision. As I mentioned before, there are certainly still good and bad days still, but she has been able to continue to work part-time through all cycles, as a small side benefit, with no loss of hair.
After 7 cycles of the above chemo (pills) treatment, our Cancer Care Team at Froedert Hospital in Milwaukee, has decided that I have progressed enough that surgery is back on the table to go in and knock the NET down even further. Their plan is to remove the remaining mass on the pancreas, remove the gall bladder as it has become enflamed from the repeated Chemo cycles, and remove the remaining tumors on the Liver by either surgery or insert radioactive material in the cancer tumors to kill them. Hopefully, it will be completed before the end of the year, my question to any, that have had any similar surgery, as to what to expect, in regards to recovery and lifestyle after this surgery. After this surgery, our cancer care team believes I will only have to take the monthly shot as a maintence function to keep the NET at bay hopefully for a very long time.
Congratulations on your progress. I'm sure it's not an easy road to travel.
Question for the group. I've just completed my radiation treatments and still have 2 more infusion cycles of chemotherapy. That should be completed by mid January. When can I expect my hair to regrow? Not really that vain just more of a curiosity question.
Hi Everyone, Lucy C. here, was just diagnosed with NETS this year on my birthday Aug 22, and have had my 1st major surgery on 10/20. This has not been very much fun. I go see the Oncologist soon and have a million questions for her! I'm a retired nurse so I have a good idea whats about to happen but I still need all the advice I can get as the one place I never worked was the Oncology Units. So, I'll be dropping in to read everyone's comments as I've already read some good news and advice. Wish me Luck, Later, Lucy
I'm glad that you posted again and that your surgery is behind you now. How are you feeling?
When will you be meeting for a follow-up with the oncologist?
Hi, in case it's of interest, the following describes my recent NET experience. Following a blockage, on July 1, 2022 I had the removal of a neuroendocrine tumor in the small bowel and one of the five nearby lymph nodes removed was found to be malignant. An Aug. 2 a Chromogranin A blood test was 102 ng/mL somewhat above the standard range. For a week after I was home from the surgery I had significant night sweats.
I had a PET scan with dotatate (Cu-64) on August 23, 2022. The radiologist noted that it showed “multiple small to borderline Cu-64 Dotatate-avid mediastinal and hilar lymph nodes, suspicious for metastatic disease.” An Aug. 25th Chromogranin A blood test was 81 ng/mL well within standard range. My oncologist offered to begin Octreotide injections. I decided to wait and to get a second opinion.
I chose to go to Dana-Farber Cancer Institute in Boston and a team there examined the original biopsy, all tests including the PET and thankfully reached a different conclusion. They saw only slight “uptake” of the radioactive marker in those lymph nodes, not the significant uptake that is usually indicative of NET cancer. Combined with my current lack of symptoms they noted that if a repeat PET scan in three months showed a similar result, I should have nothing to be concerned about.
A November 22, 2022 repeat PET scan with dotatate (Cu-64) was “similar to the prior exam, stable.” Both Drs. are very optimistic and I will have a follow up CT scan in six months. I feel fortunate and strongly recommend second opinions.
Lucy, I’m interested in any info on your surgery on NET’s, as I’m scheduled for surgery on the reduced mass on my tail of pancreas, and either removal or ablation of tumors from. NET’s. She also is having her gall bladder removed, so just trying to get some after surgery advice on any level.
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