I am now into day 5 of the eighth course. This time we have omitted the oxaliplatin because the peripheral neuropathy was getting to a level that long term loss of sensation was becoming likely.
Surprisingly, the new regime has not been easier to bear. On day 3 I was very ill with extreme fatigues and an unsound abdomen with a lot of bloating and funny noises. I am a bit better this morning, but I have noticed that far from improving, the numbness has started to migrate up the outside of my legs. I am also suffering from autonomic neuropathy, with a very labile blood pressure and postural hypotension. Oxaliplatin neuropathy is cumulative and continues to deteriorate for some time after the drug is stopped.
I am concerned that not enough thought is given to side effects of chemotherapy. The clinical trials do address side effects,but only in the round. They will report grade 4 neutropenia occurred in 5%, grade 4 diarrhea in 9%, grade 3 rash in 13% and think that this is acceptable, without thinking what it was like for the patient to suffer these side effects. Sure enough, no-one died of the toxicity, but it may well have been torture for the patient. We almost need a palliative care team plugged into relieving the side effects of chemotherapy.
One of the problems is that we are all different. Doses of cytotoxic drugs are based on what the average Johnnie can stand. Drugs are detoxified by a variety of enzymes, and we not only have polymorphisms of these enzymes which alter their effectiveness, the enzymes are inducible by exposure to toxic agents. Heavy smokers and drinkers, for example, are likely to be able to detoxify their drugs more easily, while those like myself who do not smoke and drink alcohol only very occasionally, may nor metabolise the drugs very well at all. This will mean that for a given dose I will suffer more side effects, but also more beneficial effects.
We should not be surprised then that Oncologists have to titrate the dose intensity to suit the patient, nor think of patients who can't stay the course as wimps.
In my case I think one of the problems making this course so severe is that the anti-emetics that I had for oxaliplatin have been withdrawn as unnecessary for 5-FU. But one of those anti-emetics was dexamethasone, which has other effects in combating fatigue. I am presuming that future courses will also exclude oxaliplatin, in which case I will take a short course of steroids to cover the first few days.
6 comments:
Terry,
Thinking of you . . . and hoping that you get the most benefit with the least side effects. Your comments about the difference in patient responses to drugs, the need to calibrate doses to the individual if possible, make a lot of sense. Would that we had the time, sensitivity, and technology to make this a standard part of care.
All the best,
David
Thanks for addressing the side effects and after effects of chemo.I feel like a pretty tough cookie but some of the Neuropathy's have been hard to tolerate.I hope more thought is put into the side effects and the dosing.
God Bless,
Deb Light
www.cllcfriends.com
I have a question, Doc, for when you are feeling better. The link below is to a news story about a 22year old alcoholic who died because your govt there would not approve him for a liver transplant?
http://news.sky.com/skynews/Home/UK-News/Alcoholic-22-Dies-After-Being-Refused-Life-Saving-Liver-Transplant/Article/200907315342299?lpos=UK_News_Carousel_Region_0&lid=ARTICLE_15342299_Alcoholic%2C_22%2C_Dies_After_Being_Refused_Life-Saving_Liver_Transplant
Do you think the govt would have come to the same conclusion had ths young man been a member of the Royal family, a prominent politician or other person of influence?
Burke
It was not a government decision. It was a clinical decision by the doctors concerned. There are not enough livers for all who need a transplant. If this young man had received a liver someone else would have been denied one. He had been binge drinking from the age of 13 whereas many on the waiting list have diseases like primary biliary cirrhosis which is not caused by an unfortunate lifestyle choice. How do you choose?
The same choice was presented in Bernard Shaw's "The Doctor's Dilemma".
The rules on alcoholics are clear. If a patient recovers from a bout of liver failure and then shows that he or she can remain free from alcohol for six months then they can be put on the transplant list. Unfortunately this young man did not even get out of hospital from his first bout of liver failure; he had fuminant hepatic failure for which there is no cure. Transplantable livers are not available from the pharmacy.
I'm not averse to blaming he government for all I can, but I don't think they are at fault in this way. I shall blog about where they are at fault in this case later today.
Dr DR Hamblin,
Wishing and praying for a full recovery for you. Stay positive and know that you have made a huge difference in people's lives.. I know you certianly did for us when my husband Michael got dx with CLL in '04. Stay strong.
God Bless you.
Peggy Schlayer Bonita Springs Florida
Dear Dr Hamblin,
Very sorry to hear about the neuropathy. There are three supplements I know of that you might wish to investigate further, that could alleviate and possibly reverse its progression.
S-adenosylmethionine (SAM-e) and peripheral neuropathy
Dr. Bottiglieri and colleagues, from Baylor Research Institute, in Dallas, Texas, published a review article on SAM-e and other methyl donors. They summarize, "SAM-e is required in numerous methylation reactions involving nucleic acids, proteins, phospholipids, amines and other neurotransmitters. The synthesis of SAM-e is intimately linked with folate and vitamin B12 metabolism, and deficiencies of both these vitamins have been found to reduce central nervous system SAM-e concentrations. Both folate and vitamin B12 deficiency may cause similar neurological and psychiatric disturbances including depression, dementia, and peripheral neuropathy. Studies support a current theory that impaired methylation may occur by different mechanisms in several neurological and psychiatric disorders."
R-Alpha Lipoic Acid
A nutrient that assists in carbohydrate metabolism and insulin sensitivity, while acting as an antioxidant in nerves to help diabetic neuropathy. A lack of ability to make lipoic acid during aging increases inflammation and insulin resistance. Lipoic acid also protects against the formation of AGEs.
acetyl-L-carnitine
ALC is known to boost general nerve transmission and this was recently tested in diabetic patients with peripheral neuropathy. A dose of 2000 mg per day showed a decrease in pain, improvement in nerve conduction, and some nerve regeneration.
Wishing you the best,
Laurent
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