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wwroam

My new cancer journey

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Off for another unit of blood this afternoon, my 4th in a week.My Haemoglobin levels are far from normal range but I feel better with each infusion of blood.

I'm interested in what side effects you had from CarbTax Tom. I had my share of side effects from Folfox in 2007 but nothing prepared me for the low haemoglobin levels from the Gemcitibine.

 

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WW,

My Taxol and Carboplatin side effects were about a day's worth of nausea symptoms (well controlled by medication) and three days worth of intense, arthritic-like joint pain (not controlled by medication).  I also experienced low white and red counts after infusions and had Neulasta and Procrit after many infusions.  I did not require blood transfusions.  I am still living with peripheral neuropathy in my fingers and toes and chronic "Taxol toes", a burning sensation in my toes and associated foot pain.  The numbness in my fingers makes it difficult to pick up small objects and I pound the keyboard when typing.  I also have chronic low magnesium from likely kidney damage and that causes muscle cramps.  But, I had 18 infusions of the stuff.

But, I am alive so the side effects are a bump in the road for my gift of extended life.

Stay the course.

Tom

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Thanks Tom. A bit to look forward to I guess. Neulasta is not regularly given in Australia. patients are more likely to be told to take a week off.I already have PN from my 2007 Oxaliplatin . On the plus side I don't seem susceptible to nausea.

 

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A little bit of good news.

Last Friday I had an appointment with a radiation oncologist and his registrar. The way forward is being planned and a little bit of background on my last PET scan was revealed. My cancer had an " excellent response" to the GemCarb. When I started this journey I would have been delighted to have just be cancer free. With my response to date , the radiation is almost a adjuvant role. The target has become minimizing the chances of recurrence.

 

Wayne

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Hi, Wayne,

Just wanted to check in. How is your treatment going? Please post an update when you can.

With gratitude,

Lauren
--
Digital Community Manager
LUNGevity Foundation

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Hi  Lauren

Nothing much happening at all. I've had an appointment with a radiation oncologist, a Planning Session to get marked up and an appointment for the starting day , 7th August.

I haven't heard yet from my Oncologist to find out what his schedule is. It takes a bit of organizing. Radiation is in a Public hospital and chemo is in a Centre attached to a Private Hospital. Meanwhile my Haemoglobin is inching back to normal range which is where my onc. wants it before starting anything. As my red blood cells improve I cartainly feeling better. I just have to be patient. My prognosis is not affected by my little chemo holiday.

 

Wayne

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Took matters into my own hands yesterday and set up an appointment with my medical oncologist for next Wednesday ( rather than wait for them to call me with an appointment). Nobody seemed to have their noses out of joint so roll on August 7th. The sooner I start the sooner it finishes.

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Wayne,

If I can get through Taxol and Carboplatin, so can you.  It is not a walk-in-the-park or walk-about in Aussie speak but it can be done.

Your first sensation will be "'roid-rage" from all the side effect moderating steroids they administer before infusion.  I had to take 6 pills, 6, 12 and 18 hours before infusion plus the first bag of stuff was a steroid.  Hunger after infusions was my first symptom and I ate very well and often at least on infusion day.  But, I assume you are having chemo as an adjunct to radiation. Normally, one has daily radiation treatments plus a once-a-week infusion on one of the radiation days.  If that is the case, you'll get the less concentrated variety of Taxol and Carboplatin and that might not cause you any side effects at all.  It hardly bothered me at all; I didn't even lose my hair.  

Radiation comes in like a lamb and goes out like a lion.  For my first 2 weeks, I didn't even realize I was in treatment.  Then I started getting very weak and tired and had skin burns on my chest and a constantly irritated throat complete with dry cough.  So I'd venture, radiation during your first line treatment will be the most bothersome.  But, it must be done, so....

Stay the course.

Tom

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hi Wayne,

I survived concurrent radiation and cisplatin followd by carboplatin and taxoterre (a close relative of taxol). This was for a prior Stage 3 non-lung cancer 6 years ago. I lived to tell the tale and am NED. I'm not denyiing there were some hard times with it, but my life today is really good. If I can do it, you can. Hang in there.

 

Bridget

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Hi all

Yesterday was the start of the third week of treatment. To date no chemo side effects. Only occasional hints of raqdiation oesophagus burn. I expect that will get a lot worse with the coming weeks but I have plans in place. I learnt yesterday that my creatinine levels had dropped to 110 umol/L ( one for the diabetics) which just makes reference range but I'm very happy with that.

We all need a bit of cheering up . On Friday I went to contract on a BMW M240i. I collect it tomorrow. It's a very driveable beast ( 250 kw or 340hp ).  I didn't let go of my beloved 99 WRX in the avatar. The upselling lady was on the phone yesterday. Amongst the packages was prepaying for 4 or 5 years service cost. It's a good deal. Do I dare. I believe in just going for it and let the future  look after itself. I've already prepaid for flights to Hawaii in December for the 50th wedding anniversary of a close friend. And they aren't economy either. Please excuse black aussie humour.

Wayne 

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Well I've passed the halfway mark, 4 out of 6 chemos done , and 16 out of 30 radiation treatments done. NO chemo side effects and only a slight amount of oesophagul burn, controlled with Nexium. And I still have my hair ( or what the years have left me with).

Took delivery of the 240i late Wednesday last week after Radiation and it is certainly a driveable little car. unlike the M2 that my friend owns it has a suspension that doesn't shatter the spine.

On Sunday I joined the BMW Club on a "brekky run" through some hilly twisty roads north of Brisbane. Not too much geriatric lunacy, just enough to have had fun and forget that the next day is Monday with Radiation and chemo , it's a long day.

I really have nothing to complain of , and Don't. I consider myself very fortunate, to date.

 

Wayne

 

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Coming to the end of treatment next Monday.

My medical oncologist has decided that since I have breezed through 6 rounds of CarboTaxol and I'm going for my final radiation on Monday, I can do a 7th non-scheduled round of chemo afterwards. I have a bit of redness on my back from the radiation but it isn't bothersome. My oesaphagus is holding up and I seem to be coming out fairly unscathed, unless the final 4 rounds of radiation hold out some surprises.

I've already asked about follow up. Though i'm optimistic about  the results of my treatment , I am determined to remain vigilant. Apparently they wait 3 months and then off for a PET scan. 

Though I'm getting back into the travel groove in December with my Hawaii trip, I'm considering a trip back to Japan next year  (  a country that I found fascinating )and I would like to go to the F1 race in Austin and on to Mexico City for their race. And I'm cutting my workweek back to 4 days starting Monday week. I've worked all through treatment that started April 14th and think its about time to cut myself a bit of spare time.

Wayne

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Go for that trip to Japan--I'm taking advantage of all opportunities to do what I want.  Even though my cancer adventure has been pretty tame compared to most folks (so far, anyway), it really does point up the silliness of putting off things that we want to do.  If we are fortunate enough to be able to indulge ourselves a bit, I say why not. :)

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My last radiation was on Monday 18th September. I was to have followed with an unscheduled chemo but this was cancelled due to bad blood counts so I got a bag of blood instead. I had another blood test yesterday morning and an oncologist appointment in the late afternoon. Post radiation fatigue really started to kick in last Friday. Vikram tells me that this can last 5-6 weeks. That's something to look forward to.

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Wayne,

Radiation really shows up at the end!  My first two weeks were a piece of cake; the last two were a nightmare.  I don't know how I made it from the car to the clinic the last week of radiation.

I can't remember how long it took to recover my strength post treatment.  I think a couple of weeks.  Don't fret about the infusion delays.  They were pretty frequent in my treatment experience and it didn't seem to affect my outcome.

Stay the course.

Tom

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A little update on current progress.

That BMW didn't last long. On 2nd October I wrote it off ( and did my best to write myself off ). Allianz came good on 28th November with a new replacement car. I spent 10 days in Gold Coast University Hospital flat on my back with an L4 fracture. By the time I was discharged I was on 20mg Oxycodone /day ( Endone and Targin). My back is still intermittently sore but is gradually getting better though I am now off the drugs for 6 weeks.

The Hawaiin trip went well .Fortunately I had decided early on that I was never doing a long haul flight in Economy again ( cancer brings clarity of thought ) so I was comfortable up there in Business.

Since my return I have had a CT scan and an oncologists review appointment. Nothing conclusive there . Shadow is most likely radiation scarring but I guess it's a baseline for the next CT scan in 3 months. One " advantage" of spinal damage is that it takes your mind off cancer.

Best wishes for the New Year to all

Wayne.

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hi Wayne,

Thanks for the update. I'm glad to hear that you were unsuccessful in writing yourself off. Boy, that's a really hard way to take your mind off cancer! I recommend trying yoga or hypnosis or something instead, most anything that doesn't have high risk of injury. Stay safe and keep us up to date.

Bridget

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Wow, glad you're OK!  Might be good not to tempt the fates TOO much. :)

I've got a big vacation planned, myself, for this fall--to Vietnam.  I had the travel points, and I, too, decided to spring for an upgraded ticket (just to Premium Economy, but on those long flights every little bit helps).  

Hope you continue to improve!

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I had another CT scan on the 5th March for an oncologist appointment on 12th March.

I am now officially in remission. The compression fracture of my L4 vertebrae shows up quite clearly on the CT scan but week by week it is improving.

I see my oncologist in 3 months time after another scan. My bloods are still a bit low but my onc. tells me that with all the chemo I've had over the last decade it may well stay low.

Regards Wayne

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