Ronny Allan is an award-winning international patient leader advocating for Neuroendocrine Cancer and cancer patients generally. Check out his Facebook pages and twitter accounts.
If there’s a word which is synonymous with cancer, it’s chemotherapy. It’s what most people have in their mind when they are talking to a cancer patient…… ‘have you had chemotherapy‘ or ‘when do you start chemotherapy‘.
I was nonchalantly asked by a friend some time ago ‘how did you get on with chemotherapy’ – he was surprised to hear I hadn’t had it despite my widespread disease. Cue – lengthy explanation! I wasn’t annoyed by the question; I just think people automatically assume every cancer patient must undergo some form of systemic chemotherapy. If you read any newspaper article about cancer, they do nothing to dispel that myth, as many articles contain a story about a cancer patient with no hair.
Sure, chemotherapy is not the nicest treatment to receive, and it does have pretty awful side effects for most. I watched my daughter-in-law go through 3 or 4 months of this treatment where she seemed to be confined to a combination of her bedroom and her bathroom. And it did shock me to see her without hair. I would never want anyone to go through that and it really brings it home when it happens to a close member of your family.
Despite its bad press in regard to toxicity and its awful side effects, chemotherapy is widely used in many cancers. Statistics show that it does work for many patients (….. my daughter-in-law is still here looking after two of my four grandsons and my son still has a wife ♥). However, I suspect it has a limited future as more efficient and less toxic drugs and delivery systems come online downstream. Immunotherapy is often touted as a replacement for chemotherapy, but this may be a while yet. So, for now, millions of cancer patients worldwide will continue to be prescribed chemotherapy as part of their treatment regime.
However, for some cancers, chemotherapy is not particularly effective. Neuroendocrine Tumours (NETs) is one such cancer, particularly for the low-grade of well-differentiated tumours, although but can be more effective in particular anatomical locations and at the higher numbers in Grade 2 and in Grade 3 well differentiated NET. It’s a first line therapy for most poorly differentiated Neuroendocrine Carcinomas. I’m not saying the lower grades will never receive chemotherapy – that door is always left open for those with progressive cancer who perhaps have run out of treatment options.
Putting Grade 3 to one side, I’ve heard people say that NETs is the ‘good‘ cancer or the ‘good looking’ cancer often citing the chemotherapy thing as some justification. That is of course a stupid thing to say. I accept that not everyone will lose their hair and not every chemo will cause hair loss.
Here’s the rub. Many other treatments come with pretty challenging side effects. Moreover, the side effects and the consequences of these other treatments can last for some time, and for many, a lifetime. For example, with NETs:
Surgery can be pretty extensive, in some cases radical and life changing. Many cancer patients receive surgery for NETs which is still the only real ‘curative’ treatment, although for most, it’s cytoreductive or palliative in nature. If you lose bits of your small intestine, large intestine, liver, spleen, cecum and appendix, gallbladder, stomach, rectum, lungs, pancreas, thyroid, parathyroids, pituitary gland, adrenal gland, thymus gland, ovaries, oesophagus (…….I could go on), this comes with various side effects which can present some quality-of-life issues. There can be huge consequences of having this treatment.
Other ‘consequences’ of cancer surgery include (but are not limited to), pulmonary emboli (blood clots), lymphedema, short bowel syndrome, gastrointestinal malabsorption, diabetes.
Somatostatin Analogues do a great job, but they do add to some of the effects of surgery (e.g. malabsorption).
Even the so-called ‘silver bullet’ treatment Peptide Receptor Radio Nuclide Therapy (PRRT) can have pretty severe side effects and presents some risk to kidneys and bone marrow as a long-term consequence.
I’ve not had chemotherapy and I would rather avoid it if I can. However, as I’ve hinted above, there are other harsh (….perhaps harsher?) treatments out there. Moreover, whilst hair normally grows back, your small intestines, lungs and pancreas won’t. Many people will have to live for the rest of their life with the consequences of their cancer and its treatment.
It sometimes appears that every other cancer article involves someone undergoing chemotherapy. I just wish someone would write an article about my lack of terminal ileum and ascending colon, the malabsorption issues as a consequence of that, my missing mesenteric lymph nodes, my retroperitoneal fibrosis, not forgetting to mention my diseased liver, my left axillary lymph nodes (and the mild lymphedema I now have after their removal), my left supraclavicular lymph nodes, my thyroid lesion and my hypothyroidism which may be due to that, my small lung nodule, my rib lesion and my pulmonary emboli which after nearly 6 years of daily blood thinning injections made my abdomen look and feel like I’d done 12 rounds with Mike Tyson. However, it just wouldn’t be a good picture, nor would it be as powerful as one of a person with no hair. Just saying!
I’m not playing ‘Cancer Olympics‘ with this post as I wish all cancer patients, regardless of type, regardless of treatment regimes, the very best outcomes.
You may also enjoy these similar and related articles:
Things not to say to a cancer patient – click here
Dear Doctors – there’s no such thing as a good cancer – click here
You must be doing OK; you’ve not had chemotherapy – click here
Disclaimer
I am not a doctor or any form of medical professional, practitioner or counsellor. None of the information on my website, or linked to my website(s), or conveyed by me on any social media or presentation, should be interpreted as medical advice given or advised by me.
Neither should any post or comment made by a follower or member of my private group be assumed to be medical advice, even if that person is a healthcare professional.
Please also note that mention of a clinical service, trial/study or therapy does not constitute an endorsement of that service, trial/study or therapy by Ronny Allan, the information is provided for education and awareness purposes and/or related to Ronny Allan’s own patient experience. This element of the disclaimer includes any complementary medicine, non-prescription over the counter drugs and supplements such as vitamins and minerals.
Graphic courtesy of SoBadAss.me (Sam Cleasby) In 2014, Chris and I walked 84 miles along Hadrian’s Wall on the English/Scottish border. It was a fantastic
I’ve always had a ‘sweet tooth’ and the softer the sweet the better – toffee, marshmallows, chocolate, jelly babies, jelly beans, fruit pastilles, fudge, liquorice
Update 12th January 2024 FDA Grants Breakthrough Therapy Designation to AlphaMedix for Gastroenteropancreatic Neuroendocrine Tumors (Lung and other Non-GEPNETs – see author’s comments below)
An essay by Jerry CrezickJerry is a Pancreatic Neuroendocrine Tumor (NET) patient recovering after a Whipple operation carreid out early 2022. He soon realised he
Hi RONNIE. Love your posts. I’m a mid gut Nets patient too I’ve had extensive surgery PRRT and monthly octreotide injections for five years now✔️ I just say when people say but you look good. “Thank you but don’t look under the bonnet”. My insides are the same as yours with a couple of bowel obstructions thrown in. Keep up the good work you are much appreciated. Dorothy Australia
Hey Ronny ! You’re so right again ! And it’s really good to know that other people experience what I experience. I have the same abdomen as you, by the way ! 😉
PRRT is ok, I have had 3 injections this year and the result is good : some metastases have desappeared, others have reduced in size. Only the hormonal activity of the tumor has not been stopped. I still need to have 1 sandostatine 0.5 mg injection per day to fight against the effects (flushes…). It’s not working 100 % anymore but I can live with it.
Soon, I’ll have to undergo a heart sugery though … the tricuspide valve is destroyed (probably by serotonine, as my lever is not working 100 % anymore). In total 2 valves have to be replaced. But after that surgery, I’ll be fit and fine again for some years . That’s the best news !
Very true, Ronny. I wanted to also add that even when a NETs patient has chemo, the chemo regimen can be quite different from what most people expect. For example, I’m on a common chemotherapy combination which is administered to me differently – less frequently and in smaller doses – than it would be to someone with another kind of cancer. As a result, my side effects are minimal and I still have my hair. Yet people frequently ask me how I’m “surviving” or withstanding the chemo. Truth is that in my case the tumors themselves cause more havoc and problems (pancreatitis, jaundice) than the chemo.
As usual, you are spot on. You might add radiation to the chemo. I am often asked about that. Like you say “cue a long explanation”.
Keep up the good work!
Sometimes I think you are reading my mind from across the Atlantic,Ronny. You must tell us sometime how you do that! I posted a couple of weeks ago that I had attempted to start Octreotide, but may or may not have had an allergic reaction to the test dose, so will be trying again in about 2 weeks. What freaked me out, oddly, was that I had to go to the chemo unit of the hospital for the shot. Something about that word set off alarm bells that the previous surgeries and hospitalizations had not. Because, of course, Octreotide is technically chemotherapy, in that it is an example of the use of chemicals to treat cancer. It is not DRIP chemotherapy, however, which is what the general public immediately associates with the word.
How not? Are you not seeing those as chemicals? From Merriam-Webster: “the use of chemical agents in the treatment or control of disease or mental disorder.”[http://c.merriam-webster.com/medlineplus/chemotherapy]
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They are somatostatin analogue therapy or hormone therapy. If you read the types of treatment on any Web site, you will not see somatostatin analogues (Octreotide/ Lanreotide) listed under chemotherapy. Chemotherapy is a type of cytotoxic drug
Posted on my FB page. As usual informative and myth blowing :-o)
Hi RONNIE. Love your posts. I’m a mid gut Nets patient too I’ve had extensive surgery PRRT and monthly octreotide injections for five years now✔️ I just say when people say but you look good. “Thank you but don’t look under the bonnet”. My insides are the same as yours with a couple of bowel obstructions thrown in. Keep up the good work you are much appreciated. Dorothy Australia
Love the bonnet analogy. Don’t say it to a Scotsman though, he’ll be trying to look under your hat 😆😆
Hey Ronny ! You’re so right again ! And it’s really good to know that other people experience what I experience. I have the same abdomen as you, by the way ! 😉
PRRT is ok, I have had 3 injections this year and the result is good : some metastases have desappeared, others have reduced in size. Only the hormonal activity of the tumor has not been stopped. I still need to have 1 sandostatine 0.5 mg injection per day to fight against the effects (flushes…). It’s not working 100 % anymore but I can live with it.
Soon, I’ll have to undergo a heart sugery though … the tricuspide valve is destroyed (probably by serotonine, as my lever is not working 100 % anymore). In total 2 valves have to be replaced. But after that surgery, I’ll be fit and fine again for some years . That’s the best news !
Let’s continue to be positive and to fight !
Good luck with everything 😀
Ronny do you know the best website I can contact as my daughter and friends want to do a half marathon in aid of NETS
As you are in Cardiff, probably the NET Patient Foundation. If you have any Hampshire or Dorset connections, then http://www.planetscharity.org
Very true, Ronny. I wanted to also add that even when a NETs patient has chemo, the chemo regimen can be quite different from what most people expect. For example, I’m on a common chemotherapy combination which is administered to me differently – less frequently and in smaller doses – than it would be to someone with another kind of cancer. As a result, my side effects are minimal and I still have my hair. Yet people frequently ask me how I’m “surviving” or withstanding the chemo. Truth is that in my case the tumors themselves cause more havoc and problems (pancreatitis, jaundice) than the chemo.
Thanks. If you don’t mind me asking, what is the name of the chemo please?
You are ‘spot on’, and I am grateful for your mentorship!
As usual, you are spot on. You might add radiation to the chemo. I am often asked about that. Like you say “cue a long explanation”.
Keep up the good work!
Brilliant blog again Ronny. Keeps me going thankyou
Sometimes I think you are reading my mind from across the Atlantic,Ronny. You must tell us sometime how you do that! I posted a couple of weeks ago that I had attempted to start Octreotide, but may or may not have had an allergic reaction to the test dose, so will be trying again in about 2 weeks. What freaked me out, oddly, was that I had to go to the chemo unit of the hospital for the shot. Something about that word set off alarm bells that the previous surgeries and hospitalizations had not. Because, of course, Octreotide is technically chemotherapy, in that it is an example of the use of chemicals to treat cancer. It is not DRIP chemotherapy, however, which is what the general public immediately associates with the word.
Thanks. Octreotide and Lanreotide are not really chemo though!
How not? Are you not seeing those as chemicals? From Merriam-Webster: “the use of chemical agents in the treatment or control of disease or mental disorder.”[http://c.merriam-webster.com/medlineplus/chemotherapy]
They are somatostatin analogue therapy or hormone therapy. If you read the types of treatment on any Web site, you will not see somatostatin analogues (Octreotide/ Lanreotide) listed under chemotherapy. Chemotherapy is a type of cytotoxic drug