October 23, 2013 at 8:05 am #813
Hi All, I would like to ask if anybody else has a problem with high blood pressure as mine is very high at the moment and my G.P. has prescribed me a blood pressure tablets. I have read that a lot of Carcinoid Syndrome patients suffer from High Blood pressure.
All the best
MaryOctober 23, 2013 at 9:01 am #814
Carmel Connellan here, I was diagnosed with NETs in late 2007 and
had (have) carciniod syndrome which has been fairly stable since
my various surgeries and the 4 weekly sandostation 30mg
since Jan 2010. I would have had a problem with low pressure which
has stablised and is only a problem when I have anesthesia when it
can become dangerously low. I’ve never heard anyone mention an issue
with high blood pressure but that’s not to say there are people
here who don’t have that problem. Mark is looking for questions for
the Q&A session for the NETs patients day on 9th November, so may be
you could put that question forward for Prof. Dermot O’Toole?
Best regards CarmelOctober 23, 2013 at 9:19 am #815
Hi Mary, I have had incidents of VERY high blood pressure with carcinoid. The cardiologist sorted it all out with a very effective treatment with no side effects. Has your GP referred you to a cardiologist for controlsOctober 25, 2013 at 3:56 pm #816
Hi my name is Helen I am 36 and live in Dublin. I was diagnosed with lung carcinoid three weeks after the birth of my second child when I was 31 yrs old. I had surgery in 2009 but unfortunately liver mets were found in 2010. I have been on chemotherapy since then and at present the condition is stable. I attend st James hospital and I am looking to communicate with others.October 25, 2013 at 5:37 pm #817
This is Carmel Connellan here. You can see part of my story above.
It would be really good if you could go the National NET Patient Day
on 9th November in Kilkenny. It would give you the opportunity to
be part of the patient & doctor question and answer session and an ideal
opportunity to meet other patients. The day itself is free with lunch
etc., included. Hopefully you can make it.
Best regards CarmelOctober 25, 2013 at 6:52 pm #818
Hi Carmel and others, I would have loved to come to the meeting and ask questions and meet other patients. Unfortunately I will not be able to travel at that time. Hopefully I can attend the next meeting. I look forward to following the proceedings very closely and am very interested in your questions and experiences (GI carcinoid with liver metastases). I live in Paris and sorely miss discussions with other patients or medical staff with direct carcinoid experience. Although I am being well cared for the ride has been topsy turvy and bewildering because of ignorance of the illness. I have picked up most of my information from the NET organisations on the internet. Fortunately my GPs has treated one previous case which is one less problem to deal with. Anyone travelling to France can contact me so that I can give you the French NET addresses for local hospitals.October 26, 2013 at 5:42 pm #819
Hi, it’s a pity you can’t make the conference but it will be available
online on the website afterwards so you will be able to follow
the proceedings and put some faces to names etc.
I can understand your difficulties with this illness. There is indeed
alot of ignorance about the illness and therefore conflicting advices.
It is a commom theme for many NET patients but we’re hopeful that
groups such as ours will help inform patients and they will be better
equipped to support one another.
Take care and keep in touch.
CarmelOctober 27, 2013 at 10:14 am #820
Many thanks for your message and kind thoughts.
I would have liked to ask Professor O’Toole a question if given an
opportunity particularly because of his time at Beaujon Hospital, Paris.
The background is last April after severe pain on the right side above
appendix I ended up in St Louis hospital in Paris and not Beaujon where they
specialise. Being in the “wrong” hospital entailed long delays in
diagnosis (weeks and weeks) despite what the radiologist had written, wrong
(and very frightening) primary diagnosis until the biopsy proved otherwise,
a 3 month delay in establishing a date for surgery on the primary tumour,
ignorance about anaesthesia with carcinoid and totally wrong diet during
hospital (good food but totally inappropriate and undigestable for someone
in the immediate aftermaths of a hemicolectomy eg beans, raw veg, garlic,
onions etc!!!). Also total lack of psychological backup. However, I
managed because I had read a lot on the NET sites, books, etc.
Lucky for me my oncologist trained under Professor O’Toole and is keen to
learn through my experience. They referred my file to Beaujon for advice
for surgery and to see if they could operate on my metatstases on the liver.
The reply was negative for liver surgery .
My question is should I leave it at that? I don’t really fancy chopping
and changing hospitals or getting second opinions preferring to enjoy my
life as it presents (I am 69 years old), providing that I am getting the
best treatment of course. I see that Irish patients are going to Uppsala
etc. In short is file referral to a centre of excellence like Beaujon
sufficient? Does a medical team give the same attention to outsiders?
Should I come to see Professor O’Toole with my results for his advice?
If I understand correctly liver resection is only good for a period of time
and the metastases will come back anyway. Beaujon has not proposed any
chemotherapy or treatment other than wait and see and Sandostatin Lar 30
which is working fine for the moment. But the effects seem to be
If there is a question and answer time during the conference can you take
this query into consideration please?
Many many thanksOctober 28, 2013 at 11:18 am #821
Hi Carmel here,
Your experience reflects alot of our own experiences in the lack of
general knowledge of NETs and unfortunately as a consequence wrong or
inappropriate treatment and/or care being administered.
Hence the need to set up this group in Ireland to inform patients and
caregivers and support them through their long journey with this
Fortunately your oncologist trained with Prof O’Toole so that is a
major plus and they sought advices from a centre of excellence in NETs
which is critical from a NET’s perspective.
On the right hand side on the website, you can see the heading
National NET Patient Day – Questions. If you input your question
here, it will be put forward to Prof O’Toole in advance of the
day for his reply.
Also just to note, there are also a lot of patients with liver
metatstases in this forum some have had surgery, others have not,
some are on treatment, others remain on sandostatin only.
I would be one of those with no liver surgery
and no treatment required as yet for liver mets, I remain on 30mg
Others would be on significant treatment for liver mets
so it very much depends on the patient and clinical diagnosis.
For those patients that I know who have had to
go abroad for treatments and surgeries, (in my case Sweden), we have,
had only the best of experiences and treatment. Personally, it’s
being away from home and support of family that’s the problem and not
the care and treatment provided abroad.
It would be worthwhile for you to go back to your consultant and ask
why you do not require further intervention. It’s very difficult when
you are given medical advices for the first time to ask the pertinent
questions at the time. Once you have informed advices, then you
would be in a better place to understand if you do indeed need to
take further actions.
I hope this helps.
Best regards CarmelNovember 8, 2013 at 6:16 pm #842
Hi my name is jackie, I was diagnosed July with high grade neuroendocrine anal and rectum, and secondary in lungs, have done 4 rounds of chemo, not feeling much improvement as still uncomfortable in lungs and same symptoms below, just hoping for any new miracle drugs appearing, I have not met with any net specialist as did not know we had them, just been informed by a nurse of this meeting which I am on my way to Kilkenny, and delighted to think I am not so rare,,, no one has ever heard of it when I tell them ,,,November 10, 2013 at 11:24 am #843
Never made meeting got sick,, so wanted to be there, if any other meetings on or chance to meet with specialists I would really like to go,November 10, 2013 at 11:12 pm #844
Sorry you were unable to attend yesterday’s meeting as it was a very informative meeting. Just over 2 years ago last August I started treatment and I was so low I did not expect to survive until Christmas.
Now I am hoping to live for another few years.
I understand that most of the proceedings of the meeting will be circulated in some form in the very near future.
Perhaps you should ask your present consultant to contact the NET Patient team in St Vincent’s hospital as it would appear they wish to be do their best for ALL NET Patients.
Regards PeterNovember 10, 2013 at 11:28 pm #845
Its a pity you weren’t able to make it to Kilkenny. I think you would have benefited from meeting other patients and seeing the NETs community that does exist. I would agree with everything that Peter said above. I spoke with Peter yesterday at the event and he is doing very well.
The meeting was video recorded and the footage will be uploaded onto the website, probably by the end of next week.
Also, as Peter says, it would not hurt to have your consultant give you a referral to the NET clinic in St Vincents for their opinion as NET specialists.
If you would like to talk to someone with NETs, send your contact details to email@example.com and we can get someone to contact you.
MarkNovember 14, 2013 at 3:14 pm #846
Firstly I would just like to congratulate Mark and the Association for an
excellent day last Saturday at the Annual NET Patient Day. I was attending
with my sisters in the abscence of my father as he was unwell on the day and
the warmth and support we recieved from Mark, the other Association members,
other NET patients and Tommie Gorman was hard to believe.
Just a question while I’m here, my father is struggling with the side effects
his chemotherapy (cisplatin & etoposide) and I just wanted to see if anyone
was on the same treatment and had any suggestions in terms of medication,
diet, excercise etc.
Again thanks for all your help and congratulations on the increasing
success of the foundation.
GrahamNovember 14, 2013 at 5:05 pm #847
I am on same concoction, and very weak for 1 week and sick, but now it’s 2 week recovery, I have done 4 rounds and think constipation big problem with chemo, I take took senecot and movicol, which caused more problems so drink half a bottle of prune juice each day, also on motilium , cycizine, and dexamethasone , think it’s just a rough chemo, also on shot in belly for white blood cell, and every bone hurts, don’t sleep or sit comfy from that also for two days, I try to get out to walk as feel have to build up again for next round, 2 more to do and thinking of asking to drop doze this time as I am still not back to half strength and I am in Monday for next round, will also get scan results to see if working,, it really is very hard on body, I am 49 and sometimes feel I am in 70’s ,, I am also going to ask for something stronger for pain, think few days after chemo when off steroids trouble begins, come down is hard I feel,, but only 2 more rounds, think one has to count down to keep the faith that it will work,
I also was sick and could not make meeting, and so disappointed, hope dad gets through as it really is a hard chemo,, but nurses in oncology are wonderful with cures I feel, they really are informative, also every consultant is different with prescribing meds, sometimes talk to your own GP, they will prescribe also,, jackie
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