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Updating about My Lanreotide Injections & CT Scan
As I promised I would after 3 months of lanreotide injections I’m reporting the results of my oncologist’s CT scan with contrast to determine whether the NETs tumor in my liver was still growing. The results showed that after a previous growth rate of 20% for the prior 4 months it now shows to be stable with no growth. I received my 4th injection today and will continue for the remainder of my original 10 month plan.
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That is exactly how I refer to myself- as a 'test case', rather than a 'basket case'. Read up on the latest from Israel where they talk about hereditary and hormonal and ways to overcome, plus a possible Crisper fix.
Also, I am a firm believer in keeping one's stress levels down - I notice pains when I'm particularly stressed.
Good luck to you and good luck to all of us.
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2 ReactionsAfter 8 months of lanreotide my latest CT scan shows growth in my tumors, so my NET doctor discontinued it. I am to start an oral chemo,
Temozolomide, next week for 5 days on & 3 weeks off. If you have had experience with it, please share.
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2 ReactionsGood luck! I have read here and elsewhere that this is the next line of defense - very effective! Hugs! You can beat this!💜🦓
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1 Reaction@nana120
Prayers that the chemo will be more effective.
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1 ReactionSorry you haven’t had luck with the lanreotide injections. My husband was diagnosed as a high grade two net with an 8.8 cm mass on the pancreas and inumerable spots on the liver. His Oncologist at U Of M immediately put him on monthly injections and CAP/TEM Two weeks on and two weeks off. After one year of this oral chemo he had a 40% reduction of his cancer. Since then he has had two Y 90 Treatments, one to each half of his liver after the necessary mapping procedure. We are waiting the three months necessary for results of these treatments but his cancer is stable for now. Good luck to you. Hope this helps.
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1 ReactionDon’t forget that Lutetium /Lu 177 dotatate is the latest drug approved for neuroendocrine cancers.. . this is something we should all be asking our care teams about. Just to keep it in the conversations.
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1 ReactionI’m trying to stay informed, but my NET specialist has told me he thinks there isn’t enough data yet when I asked him about Histrotripsy. I haven’t heard about Lutetium/Lu 177 dotatate, so I’ll check into it. My only dotatate PET scan was only partially paid by my insurance. The contrast medication was not paid only the scan itself. I ended up owing $420 out of pocket even after several conversations with the insurance company. My basic logic tells me the scan without the contrast was useless, but that is still what happened.
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3 ReactionsDefinitely ask about Lutathera! It has been approved for NET and most major Cancer centers have capabilities ( trained radiooncologists and facilities)
Hugs!
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2 ReactionsThe contrast allows them to see the cancer and where it’s spreading to. I get these scans done every 3 months so yeah they are most likely missing what they should be looking for
Uhm that does not look promising since you are putting yourself at risk to other forms of cancer seems more a last ditch effort medicine and I don’t call 229 people much of a clinical trial and what they don’t tell you is how many have long term side effects. Thanks for bringing to my attention still too early to say it’s right for everyone.
I went to their website for that information. At the end of the day you have to make the best decision for you but make it armed with the information they provide you with on their website.