NET's Metastasis to Brain

Hey Mark, I've had Octreotide, Lanreotide, and SI resection surgery. I'm currently doing monthly Lanreotide shots. I have not had a metastasis to the brain (yet anyway). How your feeling? Hope you get approval for the PRRT.

jlsgt:
It has been a real journey - have learned that one must be the best advocate (in concert with a supportive care giver). I believe questioning (with respect) based on research is critical.
The metastasis to my upper body was an unexpected shock.
I am fatigued and battle that daily.
Thanks for responding & for the PRRT support -
All my best,
Mark

@markmark007 I have had metastasis to the skull but not to the brain. That is a bit unnerving to think about isn't it?

Mark, sorry to hear about the progression and all you’re going through. My brother had lung cancer (not NETs) metastasize to his brain. He had 24 brain tumors that were destroyed with gamma knife radiation. We talked to him right after the procedure and he seemed fine. He was laughing and joking with us (he started it). It was 20 years ago so I can’t remember more detail than that. I hope they can use that kind of treatment on you.

@tomrennie
Where was your primary that it metastasized from to your skull? How long ago did they discover the primary, then how long after did they discover the metastasis?

@gangcarotid1 my primary is in my pancreas and spread primarily to my liver. I also have it in my bones mostly in the pelvic area, but it also has appeared from my tibia to my skull including my femur, hip, spine, and ribs. My original diagnosis in 8/22 included all of the above. Subsequent scans show that the cancer stays in my pancreas, liver, and pelvic bones. It comes and goes in my bones elsewhere in my body. How have you been doing since your surgery?

@tomrennie
Can you comment on what was used to treat the skull locations?
Any info will be much appreciated
Many thanks
Mark

@tomrennie
Just returned from my checkup at Mayo Rochester. Pretty good news. They could find no sign of what they'd suspected as a frontal skull (inner table) meningioma. And the paraganglioma i had removed from my carotid artery in July was benign, shows no signs of metastasis, and because it has never secreted any hormones, I don't need to return for checkups at Neurosurgery. I do have my vagus nerve (the head and neck surgeon who was part of the carotid tumor team called it The Brat) said it showed as undamaged after the operation, but now I've developed hoarseness, throat pain on both sides of my neck, and an intermittent piercing ear pain, which they are blaming on The Brat and said it could take as long as a year to resolve. With the perceived globus sensation im having (has felt like they misplaced a wad of gauze in there during surgery) they did a scoping of my throat and looked WAY into my ear, which all look good.
They asked me to send an update thru the MyChart portal in 8 wks as to how the symptoms are by then.
I also had CTs of chest, abdomen, pelvis; had 2 malignant tumors removed from left kidney in Oct last yr; 3 mos later they found a nodule on a lung. At 6 mos all was unchanged, no cancer recurrence and lung nodule unchanged. And labs have continued to be excellent (cuz I'm eating for my labs) so I am on an every 6 mo check w the kidneys instead of every 3. The right kidney has a 1.3 cm cyst on it, but it is looking more solid and suspicious for neoplasm. With no pain and excellent labs they still said April for next check. So, am happy.
And you?

@markmark007 Nothing specifically for it. I was on capecitabine and temozolomide, captem, for 13 cycles which took about a year. I now have been taking just capecitabine for a little over two years. The skull marks on the scans went away after the second scan so approximately six months. They have not appeared in a scan since. Do you have anything showing up on your skull?

@gangcarotid1 That is really good news. You have to be relieved?

I am doing well. My recent scans show that the cancer in my pancreatic primary, liver and pelvic bone, have been stable for a long time. The capecitabine is still working. My liver is a little beat up and showing some signs of cirrhosis. I have an appointment scheduled with hepatology to get a consult. So, I just keep moving forward and enjoying life the best that I can. Thanks for asking.