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LauriG's Message Board Messages

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RE: Progression of Carcinoid Cancer

by LauriG - June 24 at 10:04 AM

Hi annsale,

A little post-script.... I was concerned about the possibility that my symptoms were a paraneoplastic neuropathy. The neurologist and oncologist both told me "you get that with lung cancer and breast cancer but not neuroendocrine cancer". Six months later a PET scan report noted a hot spot in my breast and it turned out I had breast cancer (unrelated to NET). Since having a double mastectomy mid 2018 my neuropathic symptoms have gone away! So my body was telling me it was fighting cancer, just not the cancer I thought it was! Hope you and Jeff are well.

I haven't been on for a while, but I would encourage all of you to keep pursuing the diagnosis.

I have Carcinoid Syndrome - currently off treatment because my body could not tolerate Octreotide injections anymore - but was being treated successfully for 9 years.

My tumours have never been found even though I have had Ga68 Dotatate PET scans at twelve and six month intervals since 2010.

Also, my tumour markers have been mainly normal - CgA normal, 5HIAA normal, blood serotonin sometimes high and sometimes normal (tumours are not necessarily secreting all of the time, accounting for the fluctuating levels).

But ... we know I have Carcinoid Syndrome because the symptoms were controlled with Octreotide injections, AND two years after I started in the injections they found 9 carcinoid tumours in my Mum's small intestine, and her symptoms were completely different to mine.

So keep pursuing the diagnosis, and NEVER let anyone make you doubt yourself if they cannot find a tumour.

Hi Annsale, I am not sure how similar my symptoms may be to your husbands', but this year I developed nerve pain and exhaustion out of the blue. I had almost constant tingling in my hands, and every couple of weeks I would have several days where it felt like my leg was on fire, and it would be a little weak. Many scans and consults with a neurologist, my endorcrinologist and oncologist, and they could not determine the cause. I am gradually getting my energy back (I had two months off work), and my hands have settled down, but I am still getting the "on fire" pain. I have been on Sandostatin since 2010, now up to 50mg every 3 weeks. I have not had any other treatment. One of my friends had Lutate, and he was left with nerve pain in one leg as a permanent side effect of his treatment.

Do they know what causes your husband's collapses (i.e. blood pressure or blood sugar, or some other cause)?

I have had a couple of instances which my endo calls "agitation" as a "hormonal reaction" caused by the carcinoid which require Sando (I think milder versions of carcinoid crisis). They are usually brought on by an adrenaline hit (e.g. on a boat in rough seas). I flush, have difficulty breathing, shake, high BP, very high pulse, and become quite "manic" in my conversation. Relaxation and grounding strategies don't help because the tumours have done a "hormone dump".

Sorry, I am not sure if I answered your question?

RE: Elevated 5H1AA tests twice

by LauriG - November 01, 2017

Hi Sophie, I have not been on in a long time so just saw your post. Any update on where things are at now?

Hi Djdante, just wondering if you had an update on your situation? What part of Australia are you living in? And are you seeing a specialist who has knowledge of NETs? The Unicorn Foundation did have a list of Australian specialists if you want to look them up online. They can also tell you if there is a support group in your area, which can be a good source of pre-diagnosis information.

I was diagnosed in 2010 due to symptoms of Carcinoid Syndrome (particularly flushing and heart palps, but also abdo pain that started at the end of 2009). I was mid-30's at the time, but had been flushing since 18yo. I am telling you this because it is important for you to know that everyone can present differently, and you don't have to have all of the symptoms to fit the diagnosis.

I had one elevated CgA, but was on PPI at the time so false positive. My only real marker has been my blood serotonin which is sometimes elevated (but also sometimes mid-range normal). 5HIAA has always been normal for me.

My Mum got diagnosed 2012 due to tumours being found during surgery, but her symptoms were different to mine - just sweats and abdo pain. Her only positive marker has been CgA!

My tumours have never been found. I have Ga68 Dotatate PET every year since 2011. In 2014 some bone mets showed up on PET, but still no primary.

Most people I know personally with carcinoid have behavioural presentations similar to anxiety whether it be becoming easily physiologically aroused when confronted by a stressor, or just general agitation. Not saying that you are not suffering from anxiety as well, but it could be syndrome-related.

I am being treated with Sandostatin which helps to manage the symptoms, and I know that when I am coming up due for a needle or go off it for a PET scan I always have an increase in heart palpitations and tachycardia.

I am happy to chat more if I can help. I know how frustrating and difficult the journey is when you are not getting a clear answer as to what's going on. I live up in Townsville, Nth Qld, but my Specialist is in Sydney. Other people in our Townsville support group go to Melbourne to Peter Mac, and my Mum sees the NET cancer team at Royal Brisbane Hospital.

All the best, Lauri.

RE: Chromogranin A

by LauriG - December 30, 2016

Hi Aquaholical, you are right to not accept a "ruling out" of carcinoid from one scan. I got diagnosed with Carcinoid Syndrome in 2010 (due to syndrome symptoms and my blood serotonin tests sometimes coming back elevated). CgA was only high once and I was on PPI at the time. Octreoscan 2010 negative. Sandostatin helped control the symptoms which confirmed the diagnosis. Have been having Ga68 Dotatate PET scans (much better at finding NETs than Octreoscan) at least once a year since 2011. Nothing showed until some bone metastases appeared in 2014. They are still all that is visible in 2016, so no primary found even with the best scanning available.

Is it possible that your Mast Cell symptoms are Carcinoid Syndrome instead? Having said that, I am pretty sure I have heard a couple of people on some of the Facebook groups I am on have Mast Cell and Carcinoid. Let me know if you would like further details.

RE: Possible Carcinoid Syndrome

by LauriG - September 17, 2016

Hi Rose, if your husband had a pituitary tumour and symptoms of carcinoid, it may be a good idea for him to be checked for MEN1. If he had MEN1 I don't know if he would get to the age he is without further tumours being found, but I would still ask the question. There is a genetic test available for MEN1.

Hi there,

I was 35 years old when diagnosed and have very severe syndrome - have to keep increasing my Sandostatin treatment to manage symptoms. However, my tumours are still too small to show up on any scans. I am about the turn 41 years old. My mother got diagnosed 2 years after me (they stumbled across hers when she was having surgery for an ulcer). She does have one that shows up on scans that they have not been able to find. She was 65 years old at time of diagnosis and is still doing well.

NETs are very unique, and effect each individual differently. The first doctors I saw said I couldn't have it because to have the syndrome I would have to have multiple liver metastases - but nothing has shown up there and my liver function is fine. It is important for her to get diagnosed and started on treatment, but I would say don't start looking at life expectancy because it is too hard to tell.

Hoping your specialist trip brings you answers.

Blessings, Lauri.

Hi Kate,

I am on 40mg Sandostatin (Octreotide) every 3 weeks (was initially started on 20mg every 4 weeks but has to keep being increased to stay effective). I am not sure if your insurance company would limit dosages or frequency, but we follow the pattern of my symptoms - first increasing frequency to 3 weeks, then when that no longer worked increased the dose. My next option is Lanreotide (Somatuline Autogel). This is receiving great reports from doctors on some of the carcinoid websites. I would recommend discussing an increase of dosage / frequency with your doctor, then Lanreotide is the next option. Hope you get some assistance. Lauri.

RE: New,confused and worried.

by LauriG - August 28, 2015

Hi Daisy,

I haven't been on lately so just saw your post.

Has your son had a colonoscopy? I am making an assumption here, but I would have thought that if he is passing blood, something would be visible on either colonoscopy or capsule endoscopy (when you swallow a camera so they can see into the small intestine - a common place for carcinoid).

Blood serotonin was the only marker for me that was elevated.

Wishing you and your son the best.

Blessings, Lauri.

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About LauriG

Patient
Other Cancer
Biotherapy

I have Carcinoid Syndrome but no tumours located. I am being successfully treated with Sandostatin LAR. I am very thankful to God for the many miracles that resulted in my diagnosis.

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