1 October 2017 at 3:06 pm #55499
I am a ‘newby’. I have just found out that I have N.E.T. in my abdoman, what a surprise!. I have had my first injection of Sandostatin and then the same every 4 weeks. Is there anyone else out there having to have the same injection?. My oncologist said that I would have to have this treatment ‘for years’, he said it would ‘slow down’ the growth of the cancer. I had gone into hospital for a bowel blockage, had three scans, then sent to London to have a PET scan, this is when the N.E.T. was discovered.
I will answer every reply, thankyou2 October 2017 at 10:37 pm #55511
Hello there and welcome to this group.
I have not come across anyone who is NOT having Sandostatin so you are in good company. Personally I can say that it made an impact on my blood count from an early stage. I was diagnosed less than a year ago so feel pretty much like a newbie as well – this forum has been a really good means of finding out more about NET and lots out there are more than ready to share experiences.
Catherine3 October 2017 at 10:11 pm #55521
Hi and welcome to the forum.
I am sure you will receive lots of replies from the supportive users of this site. The injections are a common treatment for NETs and as you have said most people are on them long term to slow down and stabilise the Net tumour growth.
You may find our hand book helpful https://www.netpatientfoundation.org/support-information/general-information-on-net/the-net-handbook-your-guide-to-life-with-a-neuroendocrine-tumour/ – it talks about what a NET is – symptoms, treatments etc. For what you read to make sense to you it helps to know – where your NET started (the primary site) and the stage and grade it is at. If you are still undergoing investigations you may not know this yet.
Lindsey5 October 2017 at 8:09 am #55571
i am also on Sandostatin started monday as i had a bowel resection 5 years ago 2 tumours removed nothing for 5 years now they have found from a gallium 68 scan there are 3 in my liver also spread to lymph nodes in abdormen and back in the bowel i have been refffered to mcmillion nurses now so i dont no what my future holds for me feeling very low and alone at the moment but i do have amazing hubby xx5 October 2017 at 2:54 pm #55577
Hi Shinegirl , I don’t have any wisdom on injections but wanted to say hi. Sounds like you are being treated well .
Tracey, I am sorry to here that your NET has come back. I am sure it feels awful but hopefully the treatment plan they put you on will make a difference. Also it is great to have an amazing husband! I am very glad to have one of those. He just listens when I have been feeling low.
Take care of yourselves ladies
5 October 2017 at 4:50 pm #55578
- This reply was modified 8 months, 2 weeks ago by Veronica.
Welcome to the forum and yes, almost everyone is having these injections, either Sandostatin or Lanreotide both of which do the same thing. My husband Dave has Nets in his ileum (small bowel) and liver and was diagnosed in 2009. He has only ever had the monthly injection, no other treatments of any kind and he is still stable even with many other medical problems to contend with. So there’s lots to be positive about, even though that can be difficult to do at times. These injections were originally given for those patients who had the syndrome but it was also found that their tumours slowed or even stopped progressing. It’s not the same for everyone and we do have to be aware of that but for many people the injections have worked well for some considerable time.
I hope you continue to keep well.
Jenny5 October 2017 at 4:59 pm #55579
I’m sorry to hear of your news but I’m sure the Macmillan nurses will look after you well. Have you only just started on the Sandostatin and where are you being treated? You need to get as much information as you can as to what is happening to you so you can take informed decisions. If you’re not at a Net Centre then please do ask for a referral as it’s very important to see the right doctors.
You’re not alone either, so keep in touch on the forum because there is usually someone around to give you some support.
Regards to all
Jenny6 October 2017 at 6:37 am #55584
ty jenny i am at the queen elizabeth hospital under dr net spealist dr shar think i am feeling like this as i asked him how many tumours i had in total he would not give me a straight forward answer he said he would put the report in the post from the galllium scan then he said i can ask questions next time i come he told me there are , on my first scan there was only 1 on the liver he would do a liver resection , but now he as had the gallium scan report he said there were 3 in liver also in lymph nodes in abdorman and back in bowel were i aregenally had my first 2 as i had a bowel resection then, but now he says he cant operate as its spread just really confused xx6 October 2017 at 3:44 pm #55588
Please don’t get too despondent about what your consultant has said. Although there are a lot of things that can change their first prognosis, the fact that it’s spread does not mean that there is no hope. When Dave was diagnosed in 2009 he was told very early on that because his tumours had already spread into both lobes of the liver, liver resection was out of the question, as well as any chance of surgery for his primary in his bowel because of his other health problems. We were devastated by this news but over the years it also became apparent that a lot of other patients are at the same stage when they are finally diagnosed after many years. Sandostatin/Lanreotide have now proved very useful for some patients in slowing down the growth of tumours or even halting their growth and this has been the case for Dave and it could be the same for you too. It might be an idea to have a chat with Nikie our Nurse. I think the numbers are on the front page of this website.
Meanwhile try to keep positive and calm (difficult or impossible at times of course!) and do try to contact Nikie, I’m sure you will find her to be of some help.
Jenny6 October 2017 at 5:21 pm #55589
ty so much jenny xx10 October 2017 at 4:19 pm #55605
It’s been sometime since I was on the forum and I see we have some new Friends. Welcome to you
all and I hope you will find not only support from your fellow sufferers, but be able to smile at our comments.
Personally, I have found both from people I have never met and this has been a great help to me.
All my best wishes to you all
Trevor11 October 2017 at 2:24 pm #55607
Hi All – and welcome new members – as Lindsey has said you’ll get great support & friendship here.
Please also feel free to contact either Lindsey or myself by phone / email : 0800 434 6476 or [email protected]
You can also checkout our NET Natter Groups : https://www.netpatientfoundation.org/support-information/patient-events/
and for those of you with a Clinical Nurse Specialist – use them !!!! They’re a great source for getting more info about your particular results, scans and plans.
. . .you can also speak to Kym or Steve – our fabulous counsellors – even if its just a chat to see if a session or more may help – just let me or Lindsey know
Take care all
Nikie17 November 2017 at 9:41 pm #55864
Hello Shinegirl and Tracey, and everyone, so sorry, I have only just found this thread, very remiss of me, but, never too late to welcome you to our forum. Glad you have had some good responses, and excellent advice, as always, from our specialist nurses, who are always there for us all, they are just great, I too would certainly recommend the excellent booklet that has been produced by the foundation. I also have the 28 day injection of Sandostatin, which is delivered to my home, and administered by the practice nurse at my GP’s surgery. Try to stay positive Tracey, so much has changed since my first diagnosis over five years ago. Each morning, I love to look out of the window at our beautiful world, our ever changing seasons, and even on cloudy days, the sun waits to break through, Carole.18 November 2017 at 1:03 am #55865
Hi Shinegirl, sorry to hear of your diagnosis. As jennyl says, most of us here are on either Lanreotide or Sandostatin. I started nearly a year ago and must say, I’m feeling pretty good. Still waiting for the results of my last CT scan which STILL hasn’t been reported on. Grrrr.
I haven’t been on the forum for a while, but found it a great help when I was 1st diagnosed. Everyone is so helpful and understanding.
Try to stay positive in these early days.
Iain19 January 2018 at 11:48 am #56269
I am knew to the forum so bare with me. I was diagnosed with a tumour in my small bowel Jan. 2014 was started on Sandostatin
had a bowel resection in March 2014 and from then on slowly my life got back to some sort of normality and was feeling quite guilty at feeling ok, other than the constant trips to the toilet I thought wow I am lucky. My husband and I went on some lovely holidays, participated in a charity trip Monaco or Bust which was a fantastic experience and raised funds for Macmillan Cancer Support. I even started going back to the gym and then in December 2017 my scan came back showing my liver was enlarged, I had an Octreotide Scan this week and waiting on the results. This is only a set back and I still feel upbeat that with treatment etc. I will get back to how I was last summer, I only wish i could take the worry away from my husband and son. Am I being naive?19 January 2018 at 1:45 pm #56300
Hello Jacqualine, no, you are being positive, and remember, positive anything is better than negative nothing!! Welcome to our forum, good to know you got your life back after surgery, but of course I can’t comment on your liver being enlarged, I am just a patient, like you, but please come back and let us know your result, in the meantime, stay positive, it works! [does for me] Carole.16 February 2018 at 12:19 pm #56498
Thank you dabber for your reply.
I have had my consultation with consultant and he has suggested PRRT for tumours in both lobes of my liver.
He is very upbeat about this treatment, hopefully side effects will not be too invasive and I can cope with
them. Just waiting on when where. I have amazing support from my husband, family & friends.16 February 2018 at 6:08 pm #56499
Hello Jacqualine, good to hear from you. Glad you are able to have the PRRT treatment, many of my friends have had this, do you know which drug they will be giving you? I only ask this, as I am not sure how available the Lutetium is, in England, NICE did remove it for a while, and it should now be available again, but many of my friends have had the Yttrium 90 – I personally do not know the difference, so, would be good to hear from you, let us know when you have a date, Carole.16 February 2018 at 8:05 pm #56501
I wish you all the very best with your treatment
Trevor16 February 2018 at 9:21 pm #56502
Reading various posts on this forum you are not alone in having PRRT. I must admit to not knowing very much about it. I have multiple tumours in both liver lobes so was not able to have a resection, nor the transplant offered as a solution as more spots were found elsewhere. I had two treatments of SIRT last year which, I believe, is similar to PRRT. When I had my latest scans my tumours had “slightly” reduced so the treatment has worked. Am sure you will be fine as well.
Catherine21 February 2018 at 10:30 am #56535
Good morning to you all on this thread, I do hope you are feeling ok this morning. Please continue to post, and just have a chat, let us know how you are. I am on the monthly injections, Sandostatin LAR 30 mg. I have been having these since April 2014 [ had a break from them February, 2015 until October, 2015] I do get side effects, joint pains in my hands and elbows mainly, some months they are very bad, other months I sail through. Fatigue is certainly very real, and I have learnt to go with it, so to speak, and when I get up, always at 6:00am [ well, always had dogs and livestock] but it is the best part of the day! and that is when my energy levels are at their best, so I get everything done, and I never feel guilty anymore, when I sit down or fall asleep during the day.
I know I say this everytime, but the booklet that the netpatientfoundation has recently produced, is a fabulous ‘reference’ to everything we need to know about nets, if you don’t already have this, then it is available from the office shop, the link is above, and of course, any questions patients like myself are unable to answer, then we have our nurses [also fabulous!!!] who are there to help, Carole.21 February 2018 at 10:59 am #56538
Many thanks for messages, Dabber I think it is Lutetium 177 but nothing has been confirmed when treatment will start.
I do think it helps reading and responding to messages, wish I had started back in 2014.
Take care.21 February 2018 at 11:05 am #56539
Hello Jacqualine, that’s good news, this is the one NICE stopped, so wonderful news if it is now available in England, I understand that it has been available in Wales and Scotland though, please let us know when you know a bit more and when your treatment starts, Carole.21 February 2018 at 2:50 pm #56544
We were told by the Manchester Christie (9th Feb) that Lutetium 177 is still not approved by NICE. If it was then my wife – Deb would have been put on the regimen.
Dave21 February 2018 at 3:17 pm #56545
Hi Dave, oh, you do surprise me. I know that things could have changed at the end of last year? and I had read that it was approved in the USA? again, recently. Not sure with my facts, but I would have thought that the alternative Yttrium 90 would have been used as an alternative, as it had been previously when they removed the Lutetium 177. I personally would be very interested in what the difference is in these two options. Worth having a word with The Christie, and certainly with our nurses, Nikie or Lindsey, who may have more information on this. How is Debs doing on the second drug? Carole.6 March 2018 at 10:01 am #56694
Deb faired quite well on the 2nd drug and the first 2 weekly chemo cycle was relatively easy – if thats the appropriate word – we go back to the Christie this coming Friday for a review meeting and to collect the second 2 weekly cycle of chemo. We are expecting the dosage of the 2nd drug will be increased as Deb tolerated it quite well.
As a matter of interest will ask about the Yttrium 90 on Friday
Take care all
Onwards and upwards
Dave6 March 2018 at 10:58 am #56695
Hi Dave, so glad. There is a friend of mine on the forum that Debs. has joined, and he had the same chemo as Debs. seven months ago, I know he will be only to pleased to have a private chat with her about this, yes, we all re-act differently, but it may help to hear his story. He did reply to my question initially, and offered to chat to me privately. Yes, good idea on Friday, ask about, well, the Yttrium 90 is the one that is still available, but it is the other one that is not yet clear, which is the Lutetium, which NICE seem to be dragging their feet over the availability in England. The daft thing is, you can still have it in Wales and Scotland, take care, let us know how you go on, Carole.
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