Tag Archives: CIPN

chemo-induced peripheral neuropathy

Glad That’s Over

Halloween 2012 Pumpkins

The three pumpkins I carved

Hello folks …

Hallowe’en
We only handed out candy to about 20 kids on Hallowe’en, which was quite a low number. The rain was appalling early in the evening and must have kept some people close to home. My pumpkins were a success! Having so few visitors means that Alex must finish up all the remaining red and yellow “licorice” – frightful sugary, chemical stuff that bears no resemblance to real licorice at all.

UNREAL Candy
On that note, you might be interested in a posting from Bill Gates about innovation in the field of sugary treats, by a firm called UNREAL Candy.

A serving of Unreal™ candy contains an average of 45 percent less sugar, 13 percent less fat, 23 percent fewer calories, 149 percent more protein and 250 percent more fiber. Impressively, all products are low GI (Glycemic Index).

Unreal™ candy is made with all real food ingredients – no corn syrup, no hydrogenated oils, and no synthetic colors, for example.

That all sounds like a good idea to me, if you are not going to eat regular dark chocolate!

Medical Update
I had the final treatment, on schedule, on Thursday Oct 25 and now I am finished! My readings were a bit low and my feet were suffering quite badly from the CIPN (chemo-induced peripheral neuropathy), so we were unsure whether the Cancer Agency would or should give me the go-ahead. After seeing my blood test results the nurse called the doctor to check. The doctor essentially shrugged her shoulders and said “It’s up to Penny”. I talked to her myself and got no further information or advice. This is not new. It is really quite unbelievable that at the end of day you feel you are directing your own treatment, using expensive, risky drugs with little knowledge as to their efficacy, short term side-effects or long-term impact. They know so little about OC (as opposed to other cancers) … it seems to be a crap shoot.

Now we are at the beginning of the end of this whole process and I will slowly be able to get my health back, regain my physical strength and shake the chemo-brain. They hand out badges for being a Cancer Survivor but I think they should hand out badges for being a Chemo Survivor. I felt fine before this all started!

Factoid
While you are undergoing chemo treatments in British Columbia you can apply for a Disability tag for your car. (I didn’t bother with this because Alex was looking after me)

Factoid
After initial treatments the BC Cancer Agency does not track the usual blood marker for ovarian cancer (Ca-125). Apparently elevated markers precede physical awareness of a problem by six to nine months. Research has shown that starting renewed chemo treatments when the marker goes up provides no measurable improvement in outcomes and reduces quality of life earlier than necessary. Second or third rounds of chemo start when the patient is aware of changes to her body that indicate cancer may have returned. Treatments are started after confirming the likelihood of this by reviewing the markers or through physical (surgical) examination.

I am not planning on testing this out.

It seems much longer ago than ten days since my last treatment, but I am still quite easily fatigued, shaky, etc and I have to realize that this will be a slow process. We were surprised to see, in retrospect, that I showed no improvement over the four weeks I didn’t have chemo – perhaps because the reason I was on hiatus was that I was not in good shape and that is likely the case right now. Mmmm … right!

The Outlook

  • A couple of the nurses told me it would be four to six weeks before I started feeling a bit better.
  • My hair did NOT start growing back in the four weeks off – will try for another henna job before that happens. I hope it will start showing some signs of growth in a couple of months. It was fine in the summer, but it is a bit nippy round the edges now 🙂
  • The neuropathy “usually” goes away after a year or so – a year! – but it is not clear if ignoring the burning sensation and starting back to exercise will permanently damage the nerves. It is starting to appear in my right hand as well but I hope that having no more treatments will put a stop to that. I may have to go on drugs for a period of time as the pain in my feet will get worse before it gets better, owing to the nerves re-stitching themselves.
  • Realistically, even when I feel better physically I may not be back at work for several months because of the less tangible chemo-brain side-effects.
  • I should be able to get back to vitamins and supplements a month after the final chemo treatment.

I need to take things slowly and ignore my natural inclination to charge ahead. Quite simply, despite my best efforts, that becomes two steps forward and one step back. My goal is to clear the backlog of emails, bring my office back into shape and throw out a bunch of old stuff over the next few months. It would be nice to catch up with more friends face to face rather than through emails.

I will post updates on this journey on a less frequent basis from now on. I will put together some general thoughts, to provide insight into how you might help other friends going through these treatments. Even though we were close to my ex, Velda, through the six and a half years she took her journey, we can see now that we should have been more pro-active earlier in the process. She was extremely independent and successfully hid many of the issues that arose during her chemo treatments, and we discovered too late that some additional help along the way would have made her life easier. We have seen how things can get out of hand; how one can from time to time become mentally and emotionally drained; and how a more frequent change of scene can really boost the spirits.

I am so glad to have had Alex at my side through all this. She has been a rock. Strong though she is, it has been a lonely and stressful road for her over the last eight months; she has had much to deal with for herself as well. She deserves a very big medal.

Cheers for now …

Bridget

Round Three

Hello folks …

Thanks to those who have written asking what is going on. Quite a bit, as it turns out.

Things have been going fairly well for me recently. The tiredness is getting a little more intrusive but still nothing too much to handle, all things considered. Cycle 3 is now finished (I am half way through) and I am in an “off” week.

I had two very long days again with Cycle 3 (10 hours and 8 hours) but I snooze away some of the morning and then read.

Factoid
One thing the Cancer Agency tells you up front is “Don’t be upset because every person you interact with checks your name and asks for your birthdate. This may be within seconds of someone in the same room having asked you the same questions.”

It is true! This is part of the security system to make sure you get the right drugs, answers, blood tests, etc.

Reading
I finished a Wired Magazine – interesting article about the new data centre being built by the US in Utah, where they will store all emails, text messages, etc intercepted within the US (not strictly legal at this point, as I understand it) for Homeland Security purposes. Much time and effort going in to breaking encryption up to very high levels but they have not sorted that out yet apparently. I would think that it is a Good Thing they have not yet figured it out. If they end up breaking the encryption then everyone else will be able to do so within a very short while, and then where will we be?

I read some years ago that sensible terrorists don’t send emails, they simply take turns updating drafts using an online email server, so the information never flies through the ether.

I have been sidetracked by Johnson’s Life of London, by Boris Johnson, the tow-headed Mayor of London. It bowls along, full of fun facts and interesting observations about the city, its population over the millennia and the ingenuity, diversity, creativity and enterprise of some of the key people who lived there. Johnson’s style is akin to that of Keith Richards, whom he admires greatly (as do I, having now almost finished Life) and one can imagine him enthusiastically holding forth in person at the drop of a hat.

I learned quite a few new things not only about London but about the linguistic development of England in the first 1,000 years AD. Being raised in Scotland, where the French are always present somewhere near the surface, I was surprised to learn that French had indeed been the lingua franca in England for several hundred (different) years. Well, I guess that’s where the phrase comes from after all 🙂

I finally finished The World Without Us. A really interesting book, well worth dipping into if you don’t have time to read it cover to cover.

I bought an actual physical copy of Thinking Fast and Slow by Daniel Kahneman around Christmas but even before I was so rudely interrupted by this OC stuff I was having difficulty getting into it. Kahneman is a Nobel Laureate who worked in behavioral psychology, behavioral economics and happiness studies. I read a couple of interesting reviews and heard him on the radio so thought I would dive in. Amazon’s main summary is:

Two systems drive the way we think and make choices, Kahneman explains: System One is fast, intuitive, and emotional; System Two is slower, more deliberative, and more logical. Examining how both systems function within the mind, Kahneman exposes the extraordinary capabilities as well as the biases of fast thinking and the pervasive influence of intuitive impressions on our thoughts and our choices.

It all sounds pretty neat, and useful if you are aware of your own normal thinking processes and want to influence your decision-making in some situations by combining the methods. However I found the writing was like a scientific journal intended for academics rather than the general reading public. I suspect this book may be the Brief History of Time of the current era. Bought by many, read by few.

Side Effects
There continue to be very few physical side effects so far. I have started to experience neuropathy, which is reflective of damage to the nerves in your extremities, caused by the Taxol. I had about five evenings of tingling feet and fingers. It has gone away now and will generally stop altogether when the chemo stops, although it can get a lot worse for some people as the chemo progresses.

I changed my anti-nausea drugs from a steroid to a non-steroid medicine. I have to take it for longer, and it has some unpleasant side-effects if not properly managed, but I am hoping this will have a less negative effect on my brain. We shall see …

Oncologists
I have had fairly in-depth experience with the BC Cancer Agency over the last few years and it is clear that the interaction with this particular patient has not been as helpful as with Velda or Alex. We are not particularly taken with the oncologist assigned to me. While she may be very well qualified she does not have a good “bed-side manner”, is not communicative and tends to shrug off just about everything we tell her. She did admit that, while Vancouver has the best results in the world for OC, the treatment protocols are arbitrary and they know very little about the disease.
“We don’t know if six Cycles are better than four, or the other way round.”
“OC is very unpredictable.”
“We don’t know why there are so few people diagnosed at Stage 1 or 2. It may be that there is a different mechanism at work.”

This shows an open honesty about the process but getting any information has been like getting blood from a stone and it makes it very difficult to make informed decisions. I have requested a “second opinion” from a different doctor on the topic of chemo brain. This may be read as code for starting the process of changing the assigned oncologist. Having said that, I can call the Cancer Agency and speak to a nurse 24/7 and during business hours I can call the pharmacy or a counselor or any of their other services. If I end up leaving my name and number I am called back very quickly. Quite impressive.

Other
In other news, Alex continues to experience difficulties related to a still undiagnosed inner ear problem. We hope to see a specialist sooner rather than later about that.

My parents recently sold their house on Vancouver Island and we are assisting them in looking for a place to live in the Greater Vancouver area.

All in all there is a lot on the go! I realise that I have not answered emails from many of you and to be honest I find it difficult to get to much as I am easily distracted and quite slow at everything. However, I love hearing from you and WILL get back to you one day in the not too distant future.

Cheers

Bridget