One patient with glioblastoma still alive nine years later
by KristaC on Thu Apr 12, 2012 08:57 PM
Hi.My father was diagnosed with Carcinoid tumors in his lung - that was removed with a lobectomy, along with removal of affected lymph nodes - A year or so later they found more Carcinoid tumors in his liver and that was 'mostly' removed with a liver resection. He has been on Sandostatin injections since post op with the lobectomy but the tumors have grown. Now his doctor is suggesting we add Affinitor to the treatment he recieves already (He gets a Sandostatin injection every 3 weeks).Does anyone have info on this combination of drugs for Carcinoid tumor treatment?
I'm beginning to feel like he has become a lab rat more than anything -
Has anyone heard of alternative thearpies for Carcinoid?
by robin56 on Fri Apr 13, 2012 01:05 AM
Hi Krista...new to this myself...my husband was just diagnosed...makes one wonder what the heck is going on? Sorry for your dad and it sounds like he has endured much. My hubby was offered only Sandostatin injections....1/2 dose every 2 months to start and he has had only one...the next is the end of this month. We had resolved before we went in that any protocol we accepted had to fit the criteria of "first do no harm". I don't know if they only offered the shot because they plan to work on a gradient or that's all they thought they had. We are doing certain supplements...avoiding sugar and trying to keep his body alkaline. He's not aggressive enough in his diet (my opinion) but this is suppossedly slow growing and I don't know how to assess any of this. There is an alternative clinic not too far away from me that offers IV vit C and oxygen therapy....I just can't accept that an already weak immune system can recover well when further assaulted by chemo and the sorts.
by KristaC on Fri Apr 13, 2012 02:05 AM
Yes, I agree with you - and we were told in the beginning that Carcinoid cancer usually does not respond to Chemo. I think, pretty sure, if it comes to that, my father will opt out. Why make whatever time you have left even more miserable? He's 69 and though that's not old, the last 3 years of the treatment he has received has aged him. He's tired and depressed. His unfortunately seems very fast growing, which IS unusual. We were so happy he got through the operations okay, but then to find out that more tumors have grown even while on the sandostatin, is very disheartening. We're hoping that the Affinitor might do some good, but really know nothing about it .
I hope your husband does well on the treatment he receives, and you will be in my prayers.
by robin56 on Fri Apr 13, 2012 10:14 AM
Thank-you, prayer is important...when the medical community has nothing to offer, God has everything!
by nobles_point on Wed Apr 18, 2012 11:13 PM
My father is 62 and is battling carcinoid in his lung and liver as well. Be thankful you are in a center that has a competent cancer center. My father started with chemo therapy for an unknown primary and it nearly killed him.
Currently he is on octreotide injections and just recently got off some oral chemo, which he tolerated well. In February he received radio-labelled octreotide injections as well.
It sounds like the surgery was fairly invasive. What hospital or state or province was it performed in?
by KristaC on Fri Apr 20, 2012 04:59 PM
Prayers to you and your family too.
My Dad was operated on at one of the hospitals in downtown Toronto, Ontario. Yes the surgeries he went through were very invasive. He tolerated them well though.
BTW. He started his Affinitor this past week, and so far hasn't developed any side effects that we have noticed.
Back to the surgery info though - I am wondering why they aren't tackling the remaining tumors with the embolization techniques. Does anyone know why he would not undergo those treatments?
by winsnebe on Sun Apr 21, 2013 04:30 PM
My wife has neuroendocrine tumors in the pancreas and one in the liver. She has been on Sandostatin (monthly shot) and Affinator for 6-7 months. The tumors seem to not have grown, and possibly shrunk a little. Side effects have not been too bad - fever blisters mostly but med's helped that. The Affinator started at 5 mg, then 7.5 mg, (each for a month) then 'full' dose of 10 mg. We heard Friday at Emory that there is a new med that could replace the Sandostatin that might be 5 times more effective. We wrote down 'Proceratyde' but can't find it on the web - will see our local oncologist tomorrow so might know more.
by KristaC on Sun Apr 21, 2013 05:17 PM
This is very interesting - could you please tell me more/ anything you can find out - My father is not doing very well - it would be fantastic if there were something better than sandostatin, as it has not done much for him. Please let me know as soon as you find out!?
by winsnebe on Sun Apr 21, 2013 06:58 PM
We see this oncologist tomorrow - if he does not know of what they are considering at Emory, we'll ask him to check on it. Where are you located - did I see Ontario??
by ombansal on Thu May 02, 2013 03:12 PM
On Apr 21, 2013 6:58 PM winsnebe wrote: We see this oncologist tomorrow - if he does not know of what they are considering at Emory, we'll ask him to check on it. Where are you located - did I see Ontario??
On Apr 21, 2013 6:58 PM winsnebe wrote:
hi , in last 5 years of my fight with carcinoid, primary in rectum and mets in liver, i have tried each and every treatment available, starting with sandostatin, then chemo embulisation, 6 cycles of Lu 177 PRRT[which is approved in germany, under trials in the US], followed by another chemo embulisation, which did no good, and eventually 9 months of 5mg affinator with 30 mg of sandostatin each month since last 9 months. as of latest MRI, the tumours are progressing after the disease had become stable after PRRT and also by affinator/sandostatin combo. so, now i would be going on to 37.5 mg stutent, continue sandostatin and see how these damn things react. in addition, i would try Y90 radio embulisation.
having given a bit of my experiences, i have figured that this disease is not known to most doctors, there has not been much research on this. willy nilly, the patients become trial cases, its like shot in the dark, lets try this and see, now try that, nothing is definitive. i tolerated affinator and sandostatin quite well except many side effects which were handled with numerous pills, for bad tummy, high blood sugar, low blood count, high cholestrol, high triglycerides, tired and loss of weight. well , i could manage them, now lets see what happens with stutent.
i am of the opinion that Y90 is the best option for my stage of disease. sandostatin does control syndrome, i have not had till now, did nt give it a chance.expens ive, tell me another. all these pharma companies profit on misery of others. in india, where i live, we have revoked the IPR of some cancer drugs and prices have dropped by up to 90 %.i dont thin its possible in the US, with a very powerful drug lobby.like affinator is made in india and so will be stutent in a couple of months.
please contact me if you have any further clarification on any aspect of this disease that i may be of help. you are most welcomed, god bless all going through this type of cancer and other typestoo
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