So relieved, I wrote a poem….

Back from holiday. Back to reality. And reality could be worse! Yesterday my Oncologist told me my CT scan was stable! Thanks to God! No change. No new lumps and no spread! So no need for chemo for the next 3 months barring unpleasant surprises! Over the last two months I have been writing – creative sessions at the Oncology centre have been great fun. I have set up this blog but have been too lily-livered to publish anything. I am so relieved today – so relieved that I feel the need to post my first efforts at poetry since school! Ouch – I hear  – groans of apprehension….Do people remember the beginning of Hitch Hiker’s Guide to the Galaxy? Arthur Dent and Ford Prefect are transported up to the invading Vogon ship. They are sentenced to death by the Vogon captain – who likes to read his appalling poetry to victims before they are executed by expulsion into the inky vacuum of space. Hopefully my poetry is more easy on the ears… Here goes nothing!

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Salted Caramel

I recline in

The warm breeze

Delicious murmuring happiness

Caresses my thoughts.

*

Egg and Spoon!

Daddy! Now Please!

The fun race

Ends serenity.

*

A frenzied dash

For the line

Trophy or not

Always ice cream.

PS The girls came second in the Helford Regatta sandcastle competition and egg and spoon race. I came last in the swimming – it’s the taking part!!

Google News

“Google Search” and “Google News” are fantastic innovations. Most days I Google “Cancer” or “Cancer Cure” to look at the latest developments. This can be quite upsetting as a lot of the stories relate to patients who have died or are dying. However I have found a number of stories that have been leads for possible treatments. Today top of the Google News results for “Cancer Cure” is:

http://zeenews.india.com/news/health/diseases-conditions/breakthrough-in-cancer-cure-happy-hormone-can-kill-tumours-find-indian-scientists_1642090.html

A word of caution – it is easy to get caught up in the media hype. Tabloid articles often jump the gun and may be downright wrong. The positive findings of lab based research do not always translate into improved survival or quality of life in real patients.   Articles may be just anecdotal reports – i.e a story from a single patient which may not apply to the general population. The articles may be written by scammers or charlatans – yes i have been scammed and very upsetting it was too. So one must think very critically – we are a lot more complicated than mice. Doctors give dopamine intravenously to critically ill patients – so you can’t buy it in Holland and Barrett – and it is unlikely that dopamine or it’s derivatives will be any use to cancer patients for some years to come. These reports can be incredbly frustrating to read, especially when they finish with the line: “more research is needed before…….”. However, the happy hormone dopamine can be experienced anywhere and doesn’t cost money, so they say – we know that staying positive leads to better outcomes for patients whatever the disease – seeing this new science reinforces the need to have faith and hope for better things to come.

Phases of Clinical Trials

No doubt I will refer to the phases of clinical trials – so here is a quick summary copied from clinicaltrials.gov (a US website)


Question: What are clinical trial phases?


Answer:

Clinical trials are conducted in a series of steps, called phases – each phase is designed to answer a separate research question.

  • Phase I: Researchers test a new drug or treatment in a small group of people for the first time to evaluate its safety, determine a safe dosage range, and identify side effects.
  • Phase II: The drug or treatment is given to a larger group of people to see if it is effective and to further evaluate its safety.
  • Phase III: The drug or treatment is given to large groups of people to confirm its effectiveness, monitor side effects, compare it to commonly used treatments, and collect information that will allow the drug or treatment to be used safely.
  • Phase IV: Studies are done after the drug or treatment has been marketed to gather information on the drug’s effect in various populations and any side effects associated with long-term use.

and a quick link to our very own Cancer Research UK for a good summary:

http://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/what-clinical-trials-are/phases-of-clinical-trials

Chemotherapy-Induced Neuropathy part 2: The Best of Both Worlds

What is out there for chemotherapy-induced neuropathy? Twenty years ago – it would be very difficult for patients to access the latest medical research. Except of course by asking your doctor. Doctors, specialist or not know an awful lot but there is research going on all over the world. Papers are published by the thousands and doctors simply don’t have the time to read all of them. Staying on top of one’s special interest may be all that a physician can manage. Flash forward twenty years and now we have the indispensable internet. Pages and pages of medical information – but it is knowing where to look!

On to business.  now – Chemotherapy-induced neuropathy – CIMP. So what is it?

Here is a definition from the American Cancer Society:

Peripheral neuropathy is a set of symptoms caused by damage to the nerves that are away from the brain and spinal cord. These distant nerves are called peripheral nerves. They carry sensations (feeling) to the brain and control the movement of our arms and legs. They also control the bladder and bowel. Some of the chemotherapy and other drugs used to treat cancer can damage peripheral nerves. When this happens it is called chemotherapy-induced peripheral neuropathy (CIPN). This can be a disabling side effect of cancer treatment.

The most common symptoms are:

Pain (which may be there all the time or come and go, like shooting or stabbing pain)

Burning

Tingling (“pins and needles” feeling) or electric/shock-like pain

Loss of feeling (which can be numbness or just less ability to sense pressure, touch, heat, or

cold)

Trouble using your fingers to pick up or hold things; dropping things

Balance problems

Trouble with tripping or stumbling while walking

Being more sensitive to cold or heat

Being more sensitive to touch or pressure

Shrinking muscles

Muscle weakness

Trouble swallowing

Constipation

Trouble passing urine

Blood pressure changes

Decreased or no reflexes

There are a number of different causes of these symptoms, not only chemo –  so if they do develop you should seek the advice of your doctor.

Here are some links – some of them are from the USA.

The Sloan Kettering Hospital is a world renowned cancer treatment centre. Their website has 4 videos on this subject – 45 minutes in total and very useful up-to-date review of management and treatment:

https://www.mskcc.org/playlists/neuropathy-care-survivors

and a patient / caregiver article

https://www.mskcc.org/cancer-care/patient-education/patient-guide-peripheral-neuropathy

Here is the Macmillan webpage on the subject:

http://www.macmillan.org.uk/information-and-support/coping/side-effects-and-symptoms/other-side-effects/peripheral-neuropathy.html

This next link is from “Integrative Oncology” – where practitioners combine state of the art medical technology with other approaches including complementary and mind-body-spirit concepts:

http://www.integrativeoncology-essentials.com/2013/06/complementary-therapies-for-chemo-neuropathy/

I found this a very useful summary. Conventional therapies as well as the alternative strategies are discussed. Acupuncture seems a promising treatment, although larger studies are needed:

http://aim.bmj.com/content/30/1/4.full

Two more things – perhaps more on the fringe.

One result from my search was a pdf presentation of an Edinburgh based doctor investigating the effect of menthol cream on painful neuropathy. Cheap, cheerful and easy to apply cream. Encouragingly two thirds of the 22 patients studied improved after several weeks of using menthol cream for their symptoms. However pain did worsen in 3 patients so it is not for everyone – and indeed this is early stage research – as usual more research required before menthol cream will be recommended by doctors as routine:

http://www.anaes.med.ed.ac.uk/Chemotherapy%20induced%20peripheral%20Neuropathy.pdf

And finally some Japanese herbal medicine. Gosha Jinki Gan was shown in a phase 2 trial of around 40 patients to delay the onset of grade 2 neuropathy in colorectal cancer patients receiving oxaliplatin chemothera. A small trial but the herbs did not reduce the beneficial effects of the chemotherapy used for these patients:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4322614/

In Japan, herbal medicine is sometimes used alongside traditional chemotherapy to reduce side effects but research is lacking in this area with only small studies. The herbs are not widely available – certainly there is nothing on Amazon. There is a Japanese version of Amazon – Rakuten but my Japanese is very limited! Who knows what might arrive in the post!

Just to finish – here is “My legs are Weak” by Paloma Faith. Lyrics are a bit sad but she has a wonderful voice..

https://www.youtube.com/watch?v=z6lKaLNZSVk