Nice article from the ABC by Elise Worthington. This highlights the issues with BRCA1 genes.
I think that the best true cancer chemotherapy reference website in the world is http://www.eviq.org.au
It is a free registration for access, and gives you detailed information about chemotherapy regimes, protocols, patient information sheets, supportive care data, etc.
The spectrum of social issues explodes in some patients and their families.
As you get to know the patient better and the family trust you, more details come out. Who is truly supportive, who is the true carer, who matters in the time of trouble, etc etc. Sad. Very sad most times.
There are others, whom you would love to be a part of your family. They leave everything and are there for their parents or family or friends. Fantastic.
A social worker’s job is quite phenomenal as they must be taking in all this stuff day-in-and-day-out. Wonder how they cope with this. Really. How do they cope with all this?
Family matters. Stick close.
The best research masterclass sessions in Oncology are:
# ACORD – Asia Pacific
# Vail – USA
# Flims – Europe
If possible… attend one in a lifetime. Will change your perspective of research and analysis.
How many doctors or nurses pray with their patients? Not many, but there are some who do so. Most doctors either do not think it to be important, are not convinced or are worried about the system. I need to start praying with my patients and their families. There are so many reports of the peace and the calm which is brought in.
Found a great book called ” Gray Matter: A Neurosurgeon Discovers the Power of Prayer… One Patient at a Time” by David Levy and Joel Kilpatrick. Worth a read.
If I do not pray with the patient and their families, at least I should at least pray for them.
In the setting of incurable cancer… over time most of us learn about the more important things versus the not-so-important things. Hugs from grandchildren are more important than the possible risk of infections…. an overseas holiday is more important than completing that last infusion of chemotherapy.
It is so important to take a proper social history – who is at home with the patient, spouse (lives along or not), who supports the patient. Do children support their parents – or just weekend hellos?
We learn over time that we as humans take social issues to be vital.
Research seems simple to do. We read about it daily… someone has found something somewhere, etc etc etc. Learning to do a proper research in a scientific manner is a completely different ball game.
One of the best learning experiences I had was at the ACORD workshop – Australia and Asia Pacific Clinical Oncology Research Development Workshop. This is held every two years in Queensland, Australia for seven days.
Each of the applicants submit a concept which is evaluated by a panel and 70 participants are selected. The workshop teaches us to take the concept and develop it into a proper protocol, complete with statistics and everything needed to launch a study.
Absolutely phenomenal. Keep looking out for the future dates.
Where do we stand as far as social media is concerned? How many doctors/nurses have accounts for Facebook, Twitter, Pinterest, MySpace, etc, etc etc? More importantly how many doctors/nurses have been contacted by patients, their friends or relatives to become “friends”.
Where does the line of professionalism and personal info blur? I think this is dangerous. Be very careful.
Most hospitals in Australia would not want staff to have social media accounts giving or discussing information about patients or about the hospital activity.
Social media is a great source of engagement and information with friends and family. Stick with that 🙂
One of the hardest things for me as a doctor to to tell the patient and family that there is no more active treatment available. The simplest thing is usually to keep giving some treatment or the other. The harder thing is to say NO.
For most patients and their families – ongoing treatment means ongoing hope (however small it may be). When we say no, we are dashing that hope.
There are ways to dilly dally with words and talk about best supportive care and symptom management and stuff like that.
Hard decisions. Hard implementation.
One of the most frustrating things in the clinic is meeting with patients and their families who refuse standard proven treatment in favour of options which may not have any logical or scientific basis.
It gets worse when the cancer is completely curable with standard treatment.
Most of us can reason with patients to an extent, after which it is their call. Their life. Their responsibility.
Or is it?
Do we as a medical community need to increase awareness about wrong information being dissipated amongst patients and their families? Or do we already have enough work than to spend time on this. This is a relatively small proportion of patients who are so extreme. Should we just leave them to their thoughts and ideas?
Recently I met a lady who had a breast mass but refused all treatment including a biopsy. After lots of chatting, she told me that her spiritual leader had not given her permission for treatment. We negotiated and ultimately she agreed that God has given us common sense. Prayer is vital for everything. We also need to use our brains for decisions. She agreed for treatment in the end.
“Dr Web-browser” seems to have the answers. Depends on what we are looking for.
Look Good Feel Better – http://www.lgfb.org.au
For patients with cancer who feel dreadful about their appearance, this workshop is great. I personally think that it is not so much for the make-up and cosmetics that help them…. as much as the fellowship of knowing that there are so many other people in the same boat as them.
Massive boost to their esteem and confidence.
This is an initiative of the Australian cosmetic industry for cancer patients in Australia.
A definite suggestion to patients.
I find it extremely difficult to deal with children who have cancer, and their families. It is the single biggest reason why I do not treat kids. Too hard. The doctors and nurses who treat paediatric malignancies are absolutely fantastic. More power to them.
The only favourable point about kiddie cancers are that they are relatively more treatable as compared to the adult cancers. The horrible part is failing.
Clinical Trials for medications and drugs are broadly divided in four groups or phases:
Phase 1: Very early type of research. In some types, it would be a “first in human” study
Phase 2: Studies would have shown the medication to be relatively safe and it is now being tested for efficacy
Phase 3: The safety and efficacy have been shown to be favourable, and now it is being tested against the present standard of care
Phase 4: This study is primarily to gain more information about the medication, as it has already been approved for routine use in the market
Enrolling onto clinical trials is a good thing. It gives access to newer molecules or different ways of using older molecules. It is possible that the full benefits of the study medication may never be seen in the patients enrolled on the study, bur future generations would benefit from the same.
All trials are governed via an Ethics Committees, which may be locally or centrally based. They are the guardians of patients and their families, and would not give permission to conduct a study, unless they are convinced about safety.
The first principle remains – “First do no harm”
One of the biggest worries about chemotherapy is hair loss. It seems to be a bigger issue than even fatigue and reduced appetite. This is what I seem to find in clinical practice. The worry seems to be more in women than men, but both genders are worried.
A lot of people are really surprised when I tell them that they would not be losing their hair. All chemotherapy drugs are not the same. Some drugs cause hair loss, some do not.
Recently someone asked me about Merkel cell cancer. Relatively rare.
The website I suggested helped him – http://www.merkelcell.org/
Thought it might be worth sharing, in case more people need help with this condition.
Avastin (Bevacizumab) is a good medication in metastatic bowel cancer (both colon and rectum). It is used for extended periods of time with chemotherapy to control and reduce the burden of cancer.
It is very important to check the urinary protein while on this medication, as it does have a potential to damage the functioning of the kidney. In case, the kidneys are secreting increased amounts of proteins, it is then important to check the quantity and then if needed to stop Avastin till the kidneys recover.
We have found that a significant number of doctors forget to check urine protein, while patients are on Avastin.
Which are the best Oncology Textbooks?
# DeVita’s Cancer: Principles and Practice of Oncology
# Abeloff’s Clinical Oncology
are the best ones.
There are tons of other books, but these two seem to cover the maximum amount of information in the best possible manner.
People who have been driving their vehicles for several years (most times decades) are really upset when we tell them that they should not be driving their cars.
In Australia the onus is on the clinicians to get affected patients to stop driving their cars. The treating clinician is meant to tell the patient to stop driving and send a letter to the Driving Authority to withhold/revoke the patient’s driver’s license.
The number of clinicians who even know about this is minimal!!
If a patient’s cancer has spread to their brain, the chances of seizures or altered consciousness are quite high. There is no specific time or place when things can get out of control. Also these patients have had radiotherapy, surgery, are on high dose steroids, narcotics, etc… and thus the mental cognition and reaction time is dramatically altered.
The conversation is a difficult one. But a very important one. It could save the patient’s life and others on the road.
Medicine in Australia is top class. It may not be as cutting edge as some hospitals in the US or Western Europe, but for all practical purposes… medicine in Australia is fantastic.
There is a talk about dearth of the latest molecules, but in terms of being pragmatic and the true value for the dollar… there is almost everything available. When I talk about being available, I am talking about being funded by the government (which means free to the patient). Everything, which is not funded by the government, is available on the market (for a price).
The quality of care even in remote towns is great. If a facility is not available or there is a emergency, the Royal Flying Doctors help out.
What is the evidence of low bacterial diet in patients with chemotherapy for solid tumours? I could not really find anything conclusive in the data available.
Can someone help me out here.
Most of the data is anecdotal about a patient getting this illness or that illness, but the majority of the patients get along fine with clean, cooked food. This concept of scaring patients and their families into only eat this or that and avoid this and that…. it a complete overkill.
Now patients undergoing a bone marrow transplant with sustained neutropenia… that is a completely different story. I am talking only about patients with solid tumours undergoing chemotherapy. The period of neutropenia is relatively short and patients bouncy back fairly soon.
Eat well. Stay strong and healthy.
Cancer, Medicine and Life: A cancer and medicine blog to help on the journey of life. Medicine and Medical Oncology are rapidly changing fields and is hard for most people to keep up. A diagnosis of any illness, in particular cancer is devastating news for anyone, and the hope is that we can share knowledge and support each other.