Hallo,
my name is Trish Daniels, I want to tell you about my husband Peter Daniels. We lived in French.
Briefly, my husband was dianosed with carcinoid in 2006
Well differentiated metastatic endocrine cancer , he had surgery , hemi colonectomie and removal of several metastatic lymph nodes, several could not be removed
This operation was followed by 6monthly mri scans with iodine contrasts and cga tests,but no treatment.
The results were always sent to our general doctor who said, not to worry as the scans were showing only small increases in size.
In January 2009 at a routine mri my husband had an anyphalactic shock after the injection and nearly died, it was put down to allergy to the product, even though he had had it many times before without a problem.
The carcinoid.org website suggests it was a carcinoid crisis.
Since then he began diarrhea, severe skin problems on his face, neck hands and occasionally buttocks.
His gp treated him for dermatitis and said it could not be connected with the cancer and no review with the hospital was necessary.
My husband returned every couple of weeks last year to gp and got no help or relief, the gp said a referral to an expert was not necessary and did he want anti depressants!
Over the 3 years since diagnosis his cga was going up, the gp said it was under 100 so didn’t matter.
The carcinoid org website say that the upward trend indicates possible tumor activity.
In desperation in November I rang the surgeon who had carried out the initial surgery and we had a follow up. He was surprised that he had not seen him in the 3 years.
He re assured my husband that the cancer was slow growing and unlikely to have made much progress.
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However he ran a series of tests and found the serotonin to be 1800! He sent him for an mri which showed up a mass. He sent him in april this year for an octreoscan over 2 days where 2 new tumors were discovered in the upper mesentery near to the aorta 50mmx30mmx14mm.
Back to the surgeon who said chemo.
So he has commenced chem., 5fu and streptozozin 5 days iv then 42 days rest plus every 3 weeks somatulin 120mg to try to control his carcinoid syndrome, however this is another problem as they state no liver involvement and will not explain this phenomena.
They are going to do 3 rounds of chem.; then a scan then possible 2 more rounds then attempt the surgery which they have said is tricky due to the position.
He also has numerous smaller mesenterique lesions which are too many to remove.
No one seems to be able to help control his skin problem which actually is ruining his quality of life, as heat and sunlight make it worse.
He has never seen a neuroendocrine expert although the oncology team are taking instructions from a group called Renaten.
We are trying therefore to find an expert who will go through his dossier and explain in detail what is going on and why a supposedly slow growing, nothing to worry about condition has suddenly out of the blue produced 2 fairly large tumors.
Sorry for the length of this, but I hope it gives you an insight and maybe you can offer some advice.
Thank you so much for your help so far.
Regards
Trish and Peter Daniels
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